Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Gnatty on September 30, 2024, 07:14:02 AM
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I was quite surprised to see one of the BBC online headline news items this morning. It looks like her clinic is being investigated for prescribing high doses of HRT. And she has lost her accreditation with the British Menopause Society.
Although on reflection maybe I am not so surprised. People were starting to speak out on Instagram etc.
What does everyone think about this?
Pretty bad timing for her as she is in the middle of a UK tour.
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Menopause Matters has released a statement regarding the Panorama programme.
Here's the statement as a pdf
View/download the statement here. (https://www.menopausematters.co.uk/pdf/mm_statement_1oct2024.pdf)
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Not surprised, for the reasons you mention.
My experience of menopause doctors, having paid to see about 5 different ones over the last 5 years, is that they have their own "camp" or fixed mindset. You get those like Louise Newsom who just think ESTROGEN ESTROGEN and MORE ESTROGEN and then you have others (eg Marian Gluck clinic and Lara Briden) who think Progesterone is the answer to everything. Akin to Louise Newsom I know of places promoting incredibly worrying high doses of Progesterone daily as the answer.
Incidentally I experience the same thing when it comes to women generally... people want to help and it's human nature for people to feel what worked for them will work for others. But the reality is there is no fixed answer and such high variability between women and what their bodies need. For some, Estrogen will be the answer. Many others can't tolerate it at all (there is not yet enough of this being discussed, but I imagine it will come in time).
Will be interesting to see how things pan out for Louise Newsom
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I think that you have to question anyone that you go to privately for any health aspect.
I will be watching programme later.
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I am one of Newson's patients, and I am on a super high dose. I have regular blood tests, and my levels are not super high, so absorption is the issue. Its taken me 6 years to get to a good place, I really hope I'm not forced to come down. My mental health was on the floor before I got here
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And that's it isn't it - for some women absorption really is the issue and they should not be denied treatment and just left to suffer. But it isn't the answer for everyone and I think the concerns which have been raised by previous patients of her clinic seem to indicate that their experience was just more and more Estrogen being prescribed even when their levels were high, which IF true, is worrying.
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Sorry just one more point - I also think there is a wider conversation that needs to take place about perimenopause and how different it is from post meno. People like Davina McCall have done a great job of bringing awareness to post meno and how beneficial HRT is and taken away some of the myth and stigma surrounding it. But perimenopause is characteristically very different from post meno - often levels of Estrogen surge to very high levels at the same time as Progesterone dwindles, and it's actually this imbalance which causes many women problems. Adding in more Estrogen on top just isn't the answer for a lot of women and I don't think there is enough conversation happening around that yet. I've also observed friends of mine in their late 30s declaring that they "want HRT", under some misconception that it's going to help with weight or skin etc etc, without understanding that it's a drug and adding it in when it's not really needed can cause so many problems. All of the publicity around HRT was definitely something that needed to happen, but I worry sometimes that it has created some misconceptions for women on the younger side.
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Yes I agree and I think I fell under the magic spell too. Namely that it was a cure all for everything. There is a narrative on certain Facebook groups ( Surgical Menopause one comes to mind ) that more is always better. And so when something goes awry it's tempting to think your dose isn't enough. I have actually found that isn't the case for me. As a recent example, I increased my Sandrena dose to 3mg a few weeks ago. Couple of weeks in, sleep went wrong and started getting palpitations. Dropped back down to 2mg and hey presto back on an even keel. I do need to add in estriol cream at a lower dose but that's fine, it does a great job and it's going straight where it's needed!
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I've had similar experiences Gnatty, through trial and error where I often assumed when I had a symptom that it meant needing more Estrogen, and then found that it actually wasn't the case and felt worse etc. HRT saved my life, I probably wouldn't be here now if it didn't exist... I just think it's not always straightforward (especially in peri vs post meno) that more is the answer and caution is needed.
I also 100% agree that "established guidance" doesn't cut it, especially with something as individual as women's hormones and concerning a topic which is so under funded.
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NICE have a lot to answer for. Especially when children for example do well on a specific medication which saves repeated Hospital admissions.
Personally I know that I have been lucky in the main though I do wonder in hindsight whether my severe anxiety in my mid-late 30s was peri. But ADs have seen me OK thus far. Though there is much discussion in the media about the amount of anti-depressant medication that is prescribed, particularly since lockdown.
Thyroid function also springs to mind. 'within normal limits' may not be 'normal' for those suffering with severe symptoms.
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Dear Gilla 999!
I couldn't agree with you more!!!
I've been thinking about posting about my own experience with crazy perimenopausal hormone fluctuations for a while now.
I am 49 years old and my periods are every 22 days, very light and last only 2-3 days.
I have been struggling with night sweats, chronic insomnia, and very loud tinnitus for 1 year now.
This spring, I felt anxiety for the first time, which made me unable to function anymore, so I quit my job.
My gynecologist prescribed me HRT lanzetto spray 2 pumps and utrogestran 200mg for 12 days in the evening during the second part of the cycle. My levels of estrogen at the start of therapy was 16 pmol/L, progesterone 0.3 pmol/L, FSH 53.
After 1 month my symptoms only got worse. The gynecologist then advised me to increase the spray to 3 pumps. After 3 weeks, the symptoms continued to worsen. Then she advised me 4 pumps. My condition worsened to the point where I was getting absolutely no sleep and my anxiety was through the roof, mood swing horrible! Even the night sweats were back and tinnitus worsened.
Then the gynecologist changed my therapy to trisequence tablets, but did not inform me about the possibility of progesterone intolerance. Within 1 week I became so depressed that I even thought about suicide.
I stopped everything and decided, even though it cost me a small fortune, to monitor my hormones in a private clinic for a whole month according to the phases of the menstrual cycle.
Hormone monitoring was performed 1 month after stopping HRT.
I was shocked at how hormones fluctuated from one extreme to another.
At one point estrogen levels was 475 pmol/L, then 122, then 48, then 68, then 178. Progesterone fluctuated from 0.3 pmol/L to 7.2, FSH from 53 to 7.2, then 22 to 8.3.
I realized that as long as I am in perimenopause, when my hormones fluctuate to such extremes, I will not be successful with any HRT therapy.
I'm sure that experimenting with HRT would be torture for me at this point.
What I want to emphasize is that there is not enough talk and research about HRT during perimenopause, when hormones are in constant chaos and, unfortunately, for some women, the increase in estrogen does not help. For me it was horrible experience!
Please take my writing as my personal experience, because I do not want to convince anyone that HRT is bad or not to try it.
In my opinion, it is necessary to help women in perimenopause in a different way or with a different approach, which all specialists dealing with menopause should first discuss and decide which is the right way.
I wish all the ladies who are in peri to menopause all the best!
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I wonder whose side the British Menopause Society are on ............ :-\
Oh the good old CQC >:(
Also: how many women whose lives have been saved or improved have been interviewed? Until there are blood tests that >looking for word here< it will continue to be a bit Trial and Error.
DH is now reading the article. "They are out to get her" is his comment.
Modify message
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Emmia thanks for sharing your experience - it's very interesting to me because it matches mine almost identically, but I won't hijack Gnatty's thread by going into it here ;D I completely agree with your comments re perimenopause and not enough conversation, studies or funding around what happens to hormones during that time (vs post meno, which is a very different hormonal situation).
I'd be interested to know if Louise Newsom's clinic takes blood tests to look at hormone levels before/while increasing to very high doses. I completely agree that blood tests aren't the only thing to rely on and symptoms are equally as important, but blood tests (for all things) have a place and are there for a reason (they have been very helpful/reliable for me) and I would imagine if you are putting a patient on high unlicensed doses that you would at least want to verify.
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This is the article https://www.bbc.co.uk/news/articles/cp8e5y4e83lo
Taz x
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I wish the BMA would investigate/denounce the two destructive HRT studies that set millions of women back years when it comes to menopause treatment.
If the NHS treated menopausal women properly, fewer would need to go to private clinics. They don't routinely offer women transvaginal scans either which results in a lot of cancers and other conditions being missed.
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Gilla and Emmia - snap.
Those of you that have read any of my posts over the last few years will know that this too has been my issue.
I've never been to the Newson clinic because my body let me know very early on that estrogen hrt during my peri - was not for me. And I have definitely been led to believe that estrogen is pushed there. But then, so it is on the NHS. It's all they can offer us peri woman, despite, like Emmia found - it can cause a lot more problems.
But in general, pre or post meno, one size does not fit all.
Really interesting to see your month's worth of testing Emmia - absolutely highlights what terrible fluctuations some of us are experiencing and nothing out there to help. 🥲
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I can't comment on Newson in a personal sense as I'm not under her care.
She has stuck her neck out very far publically, and now they are coming after her and want to chop it clean off.
I'm not even a fan of hers tbh but she should be allowed a fair hearing.
I'm more pssd off that Basins(Oestrogel manufacturer)have dodged a massive bullet. In my eyes and many others' opinions, they altered/watered down the formula of Oestrogel when the Davina effect took off and demand outweighed supply. They have never accepted this but they did I believe admit that some bottles were not dispensing the correct
metered dose, causing many of us to raise the amount taken to get the same payoff. This may be a reason for LN clinic prescribing higher than the licenced dose, I don't know.
Obviously some women saying their symptoms returned after being stable for a long period are anecdotal, but some who had bloods done had hard evidence of big drops in estrogen with no other explanation than a change in formula or metered doses being lowered to meet demand.
I guess we will have to wait and see if Newson is hung out to dry or "cancelled" none of which I wish on her or anyone for that matter, but I think the panic highled by this programme will have a ripple effect on us all and probably set the whole hrt movement back.
In an ideal world, it would result in more studies into the effects of higher than the licenced dose, but I don't think we are there yet.
TD
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Did they water down the formula?! I didn't know that... that's terrible!!
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Did they water down the formula?! I didn't know that... that's terrible!!
Hia,
Only allegedly, not by admission.
I am one of the ones who felt it very keenly in that my symptoms returned and I crashed and burned after being stable.I didn't get bloodwork as not something one can demand on the NHS.
But as I said some have bloodwork showing a big drop in estrogen with seemingly no other explanation.
Many reported this to the yellow card scheme too.
TD
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Hello ladies.
I was told by an NHS consultant about two years ago that there wasn't enough research data to prove the safety of the regimes offered by the private clinics. I expect this topic will be covered in tonight's programme.
I will be watching with interest.
Take care ladies.
K.
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If the NHS treated menopausal women properly, fewer would need to go to private clinics.
This ^^^
IMO Newson is a symptom of inadequate treatment by the NHS, inadequate research in menopause and an inadequate range of treatments.
The 100mcg limit may be fine for most women but the NHS are far too hung up on the amount that goes on your skin whilst completely ignoring how much or how little is absorbed. Most women don't go to her because they like spending money, they do it because the NHS hasn't given them appropriate treatment. The 6-12 months wait for an NHS specialist is pie in the sky too, it's over a 18 months in my area so no surprise people go elsewhere if they can afford it.
Newson has recently stopped advocating half the dose if utrogestan if used vaginally so presumably they or the NHS have found it's inadequate for many women. There need to be more options for progestogens without side effects but this isn't happening either.
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Statement by the British Menopause Society:
BBC One – Panorama: The Menopause Industry
30 September 2024
It is possible that the issues raised in the BBC One Panorama programme may be causing you to be concerned about your menopause treatment. Taking HRT, which is prescribed in line with national guidance, generally provides more benefits than risks. The type and duration of use can be discussed at your next routine review (which should be at least annually). If you have any concerns about your menopause treatment, please contact your own GP or other health professional.
How much can be covered correctly in a 30 mins programme?
How many can access Face2Face GP appts. and now that there is another 'scare' story, waiting lists will be longer :-\
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British Menopause Society
Registered Charity No. 1015144.
Registered Company No. 2759439.
I wasn't aware that the BMS is a Charity :-\ until Louise mentioned it.
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How are people feeling about this article? I feel I need the individualised treatment I get privately but I'm now concerned that I'm putting myself at risk.
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You can watch the programme now online/ iPlayer
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Peach8 - we have to consider Quality of Life. Everything has a risk, even getting out of bed ;-). If a regime helps then stick with it.
The Pharmacist at the GP Surgery does an annual review: he would have to wrest off my therapies ......... because without my ADs and anti-anxiety go2 medication I wouldn't be here.
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I have just watched the programme. It's pretty damning tbh re the high doses of oestrogen and lack of research surrounding the safety. Some interviews by ex Newson doctors, ex patients and undercover 'patients'. Definitely worth a watch.
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I'm a Newson patient, only been with them since July after constantly going to GP with various symptoms. When I got the all clear from MRI fro MS the neuro consult suggested perimenopause as my symptoms all got worse around my period, I kept an accurate symptom diary. I went back to GP with this and they agreed, then gave me some sertraline to take for 6months. I went to Newson and got my prescription within days, at that point 2pumps of oestrogel and 2 capsules of progesterone 14 day on/off. I was allowed to go up to 3pumps after 6wks which I have. My GP have now took over my prescription as I haven't contacted them since I started het compared to at least once a week from Jan this year.
I have read of people on very high doses but what's the alternative, stick to the NHS GPs who won't offer HRT because of scare mongering yrs ago about risks.
People will just start looking to the black market and self prescribing doses themselves without proper follow ups.
If Newson and other clinics are in the wrong then they deserve to be dealt with, if their actions have caused illness or death then they deserve to be punished but if NiCE are with holding/restricting treatment guidelines for women then they deserve the same
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Peach8 - we have to consider Quality of Life. Everything has a risk, even getting out of bed ;-). If a regime helps then stick with it.
The Pharmacist at the GP Surgery does an annual review: he would have to wrest off my therapies ......... because without my ADs and anti-anxiety go2 medication I wouldn't be here.
I agree and I feel the same with some of my meds but I've been told recently by an NHS consultant that "you can get anything you want if you're willing to pay for it". How do we strike a balance between getting what we need when we can't get it through NHS but still be safe in the knowledge that our private provider is looking after us properly?
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Clkd Dr Louise Newson has also lost her British Menopause Society accreditation, over the prescribing of high doses of hormone replacement therapy (HRT).
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I had a problem with Newsom as I found there was too rigid a protocol. No testosterone unless Estrogen reached a certain level, no transdermal progesterone, rigid dosing.
I found with the private clinics (Gluck et al) they were prepared to start me on very low dose as I am sensitive to everything. They would prescribe a low combination to get me started. As it happens I did not continue but I can relate to the mega dose 'one size fits all' approach from the Newsom clinic. They did not appreciate me doing my own research (there are papers to suggest very low dose is good for bones for example) and would not consider any flexibility even though the low dose is LESS of a risk...
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I don't think higher doses should be 'forbidden' to women if there is evidence to back up that that's what she actually needs (and the fact that there is no room to allow for that within the NICE / NHS guidelines is a huge problem). But having a blind belief that all peri symptoms are down to needing higher and higher doses of Estrogen - which is the culture that seems to exist from within Newsom - is equally a big problem.
Panorama will have had their legal teams heavily involved ensuring they're portraying it accurately, for it to get onto their radar there must be something there.
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Elliebee - no support from the BMS then, because they have been aware of prescribing methods for years. They are a Charity apparently so won't have any1 associated that might 'bring down the ethics of the charity'. In this country 1 is innocent until proven guilty though once the media get their claws in ........
It's time for more Research overall in to hormone issues from puberty upwards . Regulated menopause clinics with Medics who know what they are doing and are prepared to go off licence when necessary. This should then be followed up with discussion between women and medics.
I wonder whether this Consultant : NHS consultant that "you can get anything you want if you're willing to pay for it" : does any private work?
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I am managed by Louise Newson’s clinic. I only got relief from disabling genitourinary symptoms of menopause when I was prescribed an increased dose of oestrogen. Before that, I was unable to walk, sit, swim, work, have sex without pain, and had have to have invasive investigations for urinary symptoms. Nothing helped. Moisturisers and anti depressants did nothing except cause more issues. All the pain and suffering of years of GU symptoms disappeared once I started on HRT. I am post menopausal and have no ovaries or uterus after hysterectomy. I am desperately worried I will have my dosage reduced and have to go back to all the old symptoms and pain.
Also it seems that there is very little reliable medical evidence about appropriate dosing of HRT so who’s to say the doses I am on are not appropriate?
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NICE probably ........ hopefully Panorama will be clear on this aspect of prescribing.
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Bet the Newson office can't move for lawyers atm.
Good job shes loaded.
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I was quite surprised to see one of the BBC online headline news items this morning. It looks like her clinic is being investigated for prescribing high doses of HRT. And she has lost her accreditation with the British Menopause Society.
Although on reflection maybe I am not so surprised. People were starting to speak out on Instagram etc.
What does everyone think about this?
Pretty bad timing for her as she is in the middle of a UK tour.
Even as a lay person and patient, I don't have the expertise I would need to form an opinion about this or any other practitioner. I have strong opinions about my own experience, but they are just my opinions. In other words, I don't know anything about HRT, but I know what I like.
However, the word "Panorama" immediately elicits side-eye from me. I'm still offended by the unscientific and pejorative episode they spewed out about ADHD in the 90s - one of the most extensively studied disorders, with truckloads of published research. I won't go off on that topic, but I have never taken Panorama seriously since then.
I take note of what some here have said about individual practitioners' ideological commitment to one specific approach. I'm still feeling rubbed up the wrong way by my specialist's report, because the more I read it the more skewed it seems towards representing my lifestyle as more unhealthy than it is.
(E.g. "has recently started doing some $specific_exercise", as if I'd said I made a resolution to do one sit-up every other Thursday and I've managed three Thursdays in a row!!1!! Whereas in fact, I made a very specific point about suddenly reaching a performance milestone at $specific_exercise after EIGHT. YEARS.)
But because she specializes in mental health and mindfulness, it has to be that my mental health and mindfulness aren't as good as they could be. Or perhaps I'm not being fair. Anyway... I should have read her profile more carefully, it's really on me that I got mindfulness flung at me when I'm not really in the market for that. At the same time, a market is what it is.
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I don't think higher doses should be 'forbidden' to women if there is evidence to back up that that's what she actually needs (and the fact that there is no room to allow for that within the NICE / NHS guidelines is a huge problem).
Indeed, and it's a half truth to say "there is no evidence to support x" if nobody has bothered to do any studies to prove or contradict x. (Or if they have, and it was poorly designed/taken out of context/otherwise flawed.)
Panorama will have had their legal teams heavily involved
I expect so.
ensuring they're portraying it accurately
A portrayal can be biased in ways that are not legally actionable.
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This feels like it may be another WHI type watershed where treatment for many woman is adversely affected by what should be a discussion about a specific issue - ie off licence oestrogen.
I am also a Newson patient, forced to pay because my GP refused me HRT (in favour of AD's). The GP has taken on my prescription but refuses to prescribe at 75 rather than 50 despite me still being symptomatic at 50.
I'm now paying again to try testosterone as GP regards T inside the reference range (0.101 upwards) as being OK, again despite me being symptomatic in line with the nice guidelines.
This is another pop at LN after the "how dare she prescribe T" guff from a couple of months ago.
I really fear this noise is going to make it even harder for woman to access HRT going forward as it creates confusion in already under informed HP's.
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My experience of menopause doctors, having paid to see about 5 different ones over the last 5 years, is that they have their own "camp" or fixed mindset. You get those like Louise Newsom who just think ESTROGEN ESTROGEN and MORE ESTROGEN and then you have others (eg Marian Gluck clinic and Lara Briden) who think Progesterone is the answer to everything. Akin to Louise Newsom I know of places promoting incredibly worrying high doses of Progesterone daily as the answer.
I mean... there are a gazillion different kinds of hormonal birth control. Because one size does not fit all. Why would anyone, therefore, expect that there would be One HRT Regime To Rule Them All?
Incidentally I experience the same thing when it comes to women generally... people want to help and it's human nature for people to feel what worked for them will work for others.
Indeed. You get a lot of that flung at you when you're greasy (I mentioned elsewhere that I used to be greasy, which is why I was on BCP for so long). First my greasiness was proof that I wasn't washing my hair often enough. Then it was proof that I was washing my hair too often.
Well - when I decided that I needed to wash my hair twice a day, at one point, I made that decision based on experience of washing my hair once a week, then twice a week, then every three days, then every other day, and then every day. There must be some point where I crossed the line from washing too little, to washing too much, but nobody seems to be able to tell me what that point was, despite their strongly expressed opinions.
(And once I had been back on BCP for 9-10 months I was able to scale it back to once a day. In case anyone is reading this and doing the scream face on behalf of my poor abused follicles.)
(There's another story there about how you're expected to just *be* clean, but you're not supposed to actively clean anything in order to attain the state of cleanliness. But that's off topic.)
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I can't comment on Newson in a personal sense as I'm not under her care.
She has stuck her neck out very far publically, and now they are coming after her and want to chop it clean off.
I'm not even a fan of hers tbh but she should be allowed a fair hearing.
I'm more pssd off that Basins have dodged a massive bullet. In my eyes and many others' opinion, they altered/watered down the formula when the Davina effect took off and demand outweighed supply. They have never accepted this but did I believe admit that some bottles were not dispensing the correct
metered dose, causing many of us to raise the amount taken to get the same payoff.
Obv some women saying their symptoms returned after being stable for a long period are anecdotal, but some who had bloods done had hard evidence of big drops in estrogen with no other explanation than a change in formula or metered doses being lowered to meet demand.
I guess we will have to wait and see if Newson is hung out to dry or "cancelled" none of which I wish on her or anyone for that matter, but I think the panic highled by this programme will have a ripple effect on us all and probably set the whole hrt movement back.
In an ideal world, it would result in more studies into the effects of higher than the licenced dose, but I don't think we are there yet.
TD
They definitely changed I noticed it straight away with the change of dispenser but then felt it within a couple weeks. I had a blood test which my Dr didn't want me to have as he said they don't mean anything?? And I was lower than when I first went into menopause fully and I had been having an extra pump for a few weeks bf I got the test🤷
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Having now watched the documentary, which wasn't any better or worse than I expected/already felt, the one big thing I think it was missing - that a couple of others have raised on this thread already - is how bloody difficult it is to get decent care from your GP. It was an extremely important and relevant issue about why people are going private in the first place, that I felt was completely missed out. In fact the only related bit I heard said something like everyone was now getting much better care from our GPs than previously.........
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::). 'previously' than when I wonder. 30 mins cannot cover many topics. I will watch with DH later who can sit on my hands in case I throw something at the laptop :o
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The 15 menopause supplements that have no scientific evidence was an eye opener!
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Supplements aside - a couple of years ago a Consultant - can't remember his speciality off the top of my head - wrote in the Telegraph that with a health, all round diet 1 shouldn't require supplements other than VitD.
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I'm so incensed by this Panorama show, I don't know where to begin.
There is an absolute witch-hunt against Louise Newson going on behind the scenes - which extends to kicking her out the BMS. There are people in this thread saying 'but she has been kicked out the BMS' [shock horror] as if this is now proof that she is a dodgy doctor - rather than realising that the BMS would have us all dissing HRT and has been dragged screaming away from the WHI study, never really refuting it with any explicit statement to equal the intensity of their initial support of it. The BMS is ultra-conservative and relies on research which is outdated and incomplete (there will never be funded research of the sort which is needed because this is women's health and we are not talking about new drugs here, but cheap hormones). That doesn't make it any more 'right'.
Secondly, I can 100% guarantee that for every woman interviewed in that Panorama programme with some scary story about high doses of estrogen, they could, IF THEY'D WANTED, easily have found as many women - actually even more - who would have told stories of NEEDING those doses and not having symptom resolution on lower doses, besides having no side effects from this dosage. (Newson herself is just one such case. Me being another. Hundreds of thousands of other women all over social media who are her patients, being more.) The fact that they only interviewed women touting this one angle was incredibly one-sided and unfair and I really hope Newson has got her lawyers on this for sure. That is not neutral and unbiassed journalism, it's professional assassination and a take-down and slander - to present such a one-sided view.
Thirdly, there was no mention in the programme of the distinction between the dosage applied to your skin and the serum estradiol levels. How some of us (with dry skin, with thick skin - who knows?!) just don't absorb very well transdermally. My levels on 6 pumps (and also on 12 pumps of gel - it was the same) was 330pmol. That is not astronomically high. 12 pumps of gel is 3x the max licensed dose. Read that again: I took 3x the max licensed dose and my serum estradiol was the same as many women on 2-4 pumps of gel. Yet this programme was all about the DOSAGE and not at all about the amount absorbed, which wasn't mentioned even once.
Doctors in that episode - like Dr Chatterjee - are actually really ANTI HRT. Until recently they were dissing it and promoting all kinds of other crap supplements to take instead. She is biassed against it as she herself had BC and couldn't take it. And THAT'S who they chose to interview???? With no one to present the other perspective?? This is just the establishment (ie the BMS) ganging up on Dr Newson.
My own experience of lying in bed awake through the night, shaking so much the bed seemed to be moving under me, with my heart going at 95bpm (normal rate in my sleep is 40bpm), and hypnic jerks constantly - all of which has got hugely better since I got my estrogen up by taking now almost 4x the licensed dose - with zero signs of high estrogen, no unscheduled bleeding, no sore boobs, nothing - is that I would probably have killed myself by now if I hadn't had access to higher doses of estrogen via Dr Newson's clinic.
So.... I am really f553cking angry.
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How many micrograms are there in 2 pumps of gel which deliver 1.5mg of Oestrogen :-\
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Joziel - your anger and frustration come over really well.
I stated earlier than the producers of Panorama probably won't interview those women that have been 'well' on various off-licence regimes. 30 mins etc. ........
Was any1 from the BMS interviewed? Again, 30 mins etc..
I will watch it with DH etc..
Which Dr Chatterjee?
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How many micrograms are there in 2 pumps of gel which deliver 1.5mg of Oestrogen :-\
If the chart on the womens-health-concern.org website is accurate then it would be equivalent to 50
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Joziel - your anger and frustration come over really well.
I stated earlier than the producers of Panorama probably won't interview those women that have been 'well' on various off-licence regimes. 30 mins etc. ........
Was any1 from the BMS interviewed? Again, 30 mins etc..
I will watch it with DH etc..
Which Dr Chatterjee?
Exactly. So many people are going to be worried yet only one side of the story is being told. How about why so many women are seeking private care in the first place?
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It's too early for me to be watching TV but I'm going to download it on catch up later.
I'm suspicious and it sounds like a hatchet job. The late, great Professor Studd had a hard time from the BMS and possibly the BMA because of his low dose progesterone regime which was brilliant for most women.
So what are the BMS and GPs going to do for women who desperately need menopause treatment? What are they going to do about the horrendous waiting lists for NHS menopause clinics and the lack of transvaginal scans that pick up numerous cancers that are currently being missed? What are their plans? The status quo is clearly unacceptable.
The UK government bang on about wanting to get people back to work and then claim it's acceptable to wait over a year for an appointment with a specialist. God forbid suggesting anyone seeks help privately.
It's appalling.
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Mary G - probably no more than previous governments have bothered to do, across all specialities. Moral is low. Trainees don't want to be GPs. Those GPs that trained in the 1980s/90s are retiring. Too much paper work to meet unreachable targets >:( choose by people who have no idea how the NHS should work.
It will be interesting to see how GPs react .......... :-X
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I had to seek private care as when I asked for help from gp after having a reaction to the patches , instead of offering an alternative she said if you dont like it rip it off ::).
I did feel eastrogen was pushed and tried to go to 3 pumps a few times but my body did not like it at all...so still at 2 pumps...dont want to lower just in case....
I hope all this doesn't change all the positives that have happened and cause a shadow over what is already a mind field for women...we are all so different..
It's all worrying :-\
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this programme was all about the DOSAGE and not at all about the amount absorbed, which wasn't mentioned even once.
There is the issue of absorption and different people absorbing different products at different rates but yet another problem is the NHS refusing to carry out hormonal blood tests. They trot out the line that they are unreliable and unnecessary but that's crap. Obviously there are severe fluctuations in peri menopause but blood tests do at least give some indication of absorption rates.
Post menopause hormone blood tests are vital, particularly if you are taking HRT for bone protection. How else do you know how well you are absorbing it?
Re high very doses of oestrogen, a lot of women need very high levels of oestrogen in peri menopause to level out the extreme fluctuations. Once post menopause, most women can reduce to a maintenance dose but it often takes years to get to that point.
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Exactly, the issue should really be - are they prescribing enough progesterone to counter the effects of the high estrogen? Not just 'are they prescribing too much estrogen'?
Dr Chatterjee is on Instagram. I had to unfollow her. I felt she had an agenda behind all her posts which were constantly digging at Louise Newson and HRT generally. This is all such crap.
As for blood tests, you are supposed to be able to increase up to the max licensed dose without needing any blood tests. After that, you need blood tests to see if you are absorbing okay.
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I found it very interesting. They did discuss that some women require higher “off licence” dose due to absorption issues !! I think the concern is that some clinics are over prescribing off licence doses without doing all the necessary patient safety checks first and/or discussing the risks .
Some highly respected menopause specialists contributed to the program including Menopause Matters Dr Heather Currie !
Joziel : There wasn’t a Dr Chatterje on the programm unless I missed her ??
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Any1 who feels that the Panorama programme is biased should write to the BBC ........ short, sharp comments. Otherwise the BBC will believe that the view points are OK!
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Have you watched it CLKD?
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Not yet. Am waiting for DH to sit on my hands to stop me throwing bricks at the TV :D
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CLKD definitely worth watching.
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There was a Dr Chatterjee on it, watch it again.
And no, they didn't really elaborate on the absorbency issues or explain what that meant or interview a single woman with them who needed higher doses, so it's not exactly fair and equal and impartial, is it?
And sorry but I don't give any weight automatically to 'highly respected menopause experts' (including any behind online forums who as associated with the BMS) - because I distrust the BMS and the lies they have fed us about the WHI and how slow they have been to change tack on that and how conservative they are and how it is basically like trying to turn the Titanic around. I respect people who demonstrate to me that they are worth respecting, that they know the research, that they can think for themselves...
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Sorry but Joziel why do you have to be so rude to people? It was a perfectly polite question. And actually she is correct. The Doctors name is Annice Mukherjee, not Chatterjee!
And you are in danger - and we all can be guilty of this - of cherry picking which menopause doctors you listen to and ignoring those whose narrative doesn't fit in with your own beliefs.
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I'm so incensed by this Panorama show, I don't know where to begin.
There is an absolute witch-hunt against Louise Newson going on behind the scenes - which extends to kicking her out the BMS. There are people in this thread saying 'but she has been kicked out the BMS' [shock horror] as if this is now proof that she is a dodgy doctor - rather than realising that the BMS would have us all dissing HRT and has been dragged screaming away from the WHI study, never really refuting it with any explicit statement to equal the intensity of their initial support of it. The BMS is ultra-conservative and relies on research which is outdated and incomplete (there will never be funded research of the sort which is needed because this is women's health and we are not talking about new drugs here, but cheap hormones). That doesn't make it any more 'right'.
Secondly, I can 100% guarantee that for every woman interviewed in that Panorama programme with some scary story about high doses of estrogen, they could, IF THEY'D WANTED, easily have found as many women - actually even more - who would have told stories of NEEDING those doses and not having symptom resolution on lower doses, besides having no side effects from this dosage. (Newson herself is just one such case. Me being another. Hundreds of thousands of other women all over social media who are her patients, being more.) The fact that they only interviewed women touting this one angle was incredibly one-sided and unfair and I really hope Newson has got her lawyers on this for sure. That is not neutral and unbiassed journalism, it's professional assassination and a take-down and slander - to present such a one-sided view.
Thirdly, there was no mention in the programme of the distinction between the dosage applied to your skin and the serum estradiol levels. How some of us (with dry skin, with thick skin - who knows?!) just don't absorb very well transdermally. My levels on 6 pumps (and also on 12 pumps of gel - it was the same) was 330pmol. That is not astronomically high. 12 pumps of gel is 3x the max licensed dose. Read that again: I took 3x the max licensed dose and my serum estradiol was the same as many women on 2-4 pumps of gel. Yet this programme was all about the DOSAGE and not at all about the amount absorbed, which wasn't mentioned even once.
Doctors in that episode - like Dr Chatterjee - are actually really ANTI HRT. Until recently they were dissing it and promoting all kinds of other crap supplements to take instead. She is biassed against it as she herself had BC and couldn't take it. And THAT'S who they chose to interview???? With no one to present the other perspective?? This is just the establishment (ie the BMS) ganging up on Dr Newson.
My own experience of lying in bed awake through the night, shaking so much the bed seemed to be moving under me, with my heart going at 95bpm (normal rate in my sleep is 40bpm), and hypnic jerks constantly - all of which has got hugely better since I got my estrogen up by taking now almost 4x the licensed dose - with zero signs of high estrogen, no unscheduled bleeding, no sore boobs, nothing - is that I would probably have killed myself by now if I hadn't had access to higher doses of estrogen via Dr Newson's clinic.
So.... I am really f553cking angry.
Absolutely agree.
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What puzzles me is why on earth the women who felt worse on the higher doses didn't just stop?
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Sorry, I'm not really being rude (can't even remember who I'm responding to) - I am just really angry and incensed by this Panorama thing and how it is really slander, and nothing will be done.
Yes, I got the doctor's name wrong... but the point stands, it's the same doctor on Instagram I unfollowed because she was basically subtlely countering everything Louise Newson said without naming her by name. Newson would post a video and then this doctor would undermine and poop on whatever it was Newson had said, without naming her. It is just too much. Women don't want this. It's gross behaviour from menopause 'experts' to engage in all this. We're not in the playground.
I'm not cherry picking which doctors I listen to - I am going by my own experience and what I've learnt from reading accounts of zillions of other women over the last 4 years I've been battling this. I'm sure there ARE women who have had endometrial issues as a result of high estrogen... BUT 1) they would have had insufficient progesterone (as was glossed over in the Panorama show with one woman who mentioned her progesterone was halved), 2) they would have had high SERUM estradiol, it's not about how much they are applying externally but about testing bloods and 3) for every one woman they find that this applies to, going by accounts on social media alone, there are far more who need the higher doses and are completely fine on them. If there were an epidemic of endometrial cancer in the UK as the result of Newson prescribing high doses of estrogen, you can be sure it would be all over every Facebook group and everywhere else - and it's not. Instead there are plenty women who are doing fine on higher doses and feel they really need them. Who were not interviewed...
So - sorry if I come across as 'rude', it's not directed at any specific person other than the entire Panorama situation....
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Sorry, I'm not really being rude (can't even remember who I'm responding to) - I am just really angry and incensed by this Panorama thing and how it is really slander, and nothing will be done.
Yes, I got the doctor's name wrong... but the point stands, it's the same doctor on Instagram I unfollowed because she was basically subtlely countering everything Louise Newson said without naming her by name. Newson would post a video and then this doctor would undermine and poop on whatever it was Newson had said, without naming her. It is just too much. Women don't want this. It's gross behaviour from menopause 'experts' to engage in all this. We're not in the playground.
I'm not cherry picking which doctors I listen to - I am going by my own experience and what I've learnt from reading accounts of zillions of other women over the last 4 years I've been battling this. I'm sure there ARE women who have had endometrial issues as a result of high estrogen... BUT 1) they would have had insufficient progesterone (as was glossed over in the Panorama show with one woman who mentioned her progesterone was halved), 2) they would have had high SERUM estradiol, it's not about how much they are applying externally but about testing bloods and 3) for every one woman they find that this applies to, going by accounts on social media alone, there are far more who need the higher doses and are completely fine on them. If there were an epidemic of endometrial cancer in the UK as the result of Newson prescribing high doses of estrogen, you can be sure it would be all over every Facebook group and everywhere else - and it's not. Instead there are plenty women who are doing fine on higher doses and feel they really need them. Who were not interviewed...
So - sorry if I come across as 'rude', it's not directed at any specific person other than the entire Panorama situation....
I agree that the documentary is sorely lacking a balanced view, only highlights the accounts of a select handful of women who brought their complaints to national television. However, I do think that the clinic might have shot themselves in the foot at times by prescribing high doses of oestrogen without the corresponding dose of progesterone to balance it. I certainly don’t know each of these women’s stories but, going off what they all described of their symptoms on those higher doses, all sounded like oestrogen excess from not having progesterone to balance it. What some pointed out here, I’m also puzzled that the programme barely mentions the very different absorption rates of women who take transdermal oestrogen. Neither does it mention the thousands of complaints women made to the manufacturer of Oestrogel about not getting enough oestrogen from each pump forcing them to increase the number of pumps they take. This and many other points could have been mentioned and might have helped viewers to get a more balanced view.
Sorry, but I do think there’s a bit of a witch hunt going on as well - it’s not a new thing that NHS doctors turn on their own for daring to practice differently. Ask the many doctors who branched out into natural medicine, including some thyroid doctors. Some have described the relentless victimisation they face from medical boards as like having an X marked on their back. Some have even given up their practices or prescribing rights rather than “fighting these giants”. Sadly, all this does is to take more good doctors (who actually help people and change lives for the better) off the grid. Which ultimately removes our choices of treatment and reduces our options for getting well. It also places the ‘power’ for getting us well into the hands of the few. Lord help us. Just as we ladies are seeking hormonal balance, I think documentaries (and medical professionals generally) should also look to provide balance if they really want to educate and help people.
This is just my view.
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Hello ladies.
The Panorama programme was everything I expected it to be. It was a typical piece by a journalist putting forward an opinion and certainly not a documentary that explored different points of view.
As we know Oestrogen is a powerful hormone and the medics are right to be cautious about prescribing high amounts but surely it can be used safely with the right systems in place, such as regular blood tests and scans.
Presumably the women featured are now without HRT or are on very low amounts that are next to useless and their debilitating symptoms are continuing.
Personally I want an HRT treatment that is safe and actually works. That, ladies is the dream!
Take care everyone and wishing you all well.
K.
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The Panorama programme was very one-dimensional.
It's goal seemed to be to shame LN, and put fear in women and the private and NHS practices again,
just like the original Women’s Health Initiative study in 2002.
How was this programme helping the wider female menopausal community? It wasn't, it's done the opposite bcz it only gave a few examples of where things had gone badly wrong. I'm afraid the crawling banner that said..."Do not stop your treatment" shows the programme makers knew this would be the effect.
Plus why didn't LN have the right to reply on the programme? I don't recall Kirsty saying....we asked LN to appear on this programme and she declined. Or am I mistaken?
At the core of the programme was a serious point: If you are taking higher-than-licensed doses of estrogen, you need regular monitoring of blood tests measuring estrogen absorption and regular transvaginal scans.
Because the NHS don't freely offer this and the clinics charge extra mega amounts of money for these test women don't end up having them.
I don't know why, for example, the LN clinics don't offer bundles that factor these 2 test into the costs so women don't have to choose to pay more for these and think they can skip them.
In the year it took them to dig dirt on LN they could have done some studies on absorption and the reliability or
the current HRT on offer to women.
TD
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This documentary was so one sided, although there were statements from the clinics themselves, where was the lady in question who has without doubt had her reputation shot to pieces by this biased based documentary, all her wonderful work on the menopause up in flames.
I await her statement with interest.
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Jillyboo - that's always been a query of mine. If a medication makes a patient feel worse, then stop taking it and review. When I began ADs I was told to continue for at least 6 weeks, well in the first 4 'tries', I had to stop after 3/4 days. Otherwise I wouldn't be here. :-\
As an aside, I also wonder how many 'charities' get that particular status .......... there are too many trying to drum up funds under similar umbrellas >:(.
I await the outcome with interest. It's raining so we may even watch the programme ......... browsing the BBC news last night, it seems that many are unhappy with Panorama! [1 family whose child had been knifed were not consulted about an up-coming programme focussed on the state of the killer's mental health. No courtesy applied there then.]
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There was an earlier thread about her being investigated in 2021, as one of the doctors who worked at her clinic had spoken out about her insistence on upping the oestrogen dose as standard. I am sure we would agree it’s very different when absorption issues and, as long as they are doing frequent testing for those on over 100mg, surely those doctors who left her practice would have been comfortable with that?
My main issue with Newson is her over promotion that women must have oestrogen HRT to protect their bones and hearts, insinuating that those who do not are being ignorant and will come a cropper without it. It gets repeated everywhere, including this forum. The evidence is actually very weak on this for menopausal women (only younger women).
The BMS need to follow strict guidelines to receive their funding, hence why they also cannot support BHRT clinics or any others who prescribe strongly off-licence. Perhaps this has helped those understand that BHRT clinics are also not evil, just off-road to help those who cannot be helped with off the shelf doses.
Apparently, Newson Health are now incorporating progesterone only therapy and nutritional support, very important and possibly more-so than hormones to deal with root causes - although I suspect it comes with a high price tag as they had that offered at the BHRT one I used!
Hopefully this means that other medics, and the experiences of her own patients, are educating her that it’s not just about the big ‘O’. :o
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I am not a Newson patient and found this to be a disgraceful hatchet job - apart from anything else, risible 'journalism' and 'science' - imagine calling a report 'the meno industry uncovered' (or insert any industry of your choice) and then proceeding to zone in on a miniscule sample of people from one private practice.
The oestrogen dose versus absorption distinction was indeed totally disregarded and it's also important to put Newson's approach into context - she hasn't actually pioneered anything herself but rather is largely following the John Studd approach (which in turn formed Nick Panay) but they choose to savage her. That Studd/Panay school is not simply the preserve of monied patients going to private clinics but is practised in NHS settings such as Chelsea and Westminster.
Meanwhile, practically every day on this forum someone reports examples of egregious ignorance on the part of GPs et al. in relation to HRT.
That is the real scandal.
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What happened to Nick Panay?
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I thought it was a very poorly conducted documentary that was full of holes. I'm not quite sure why Kirsty Wark was looking so baffled and pulling silly faces either.
I have come across Mukerjee before and she is very anti HRT.
The younger woman who went to Newson after a hysterectomy is a strange case to say the least. Where was her oncologist in all of this? Why wasn't she having regular scans - in her case I would have thought it would have been MRI scans.
They didn't make it clear why they were slagging Newson off for prescribing high oestrogen doses but seemed to point towards uterine cancer which the NHS fail to monitor properly because they don't offer routine uterine scans, they just sit back and wait for women to present with symptoms.
So what are the BMS and the NHS going to do for menopausal women then? What improvements do they intend to make and what do they intend to do about the ridiculous waiting lists for menopause clinics? Do we know their plans going forward yet?
Bravo Panorama, you just scared thousands more women off taking HRT and lumbered them with years of debilitating symptoms.
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What happened to Nick Panay?
He's still very much around, in private practice as well as NHS, though recently retired from Chelsea & Westminster
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Woman's Hour on Radio 4 at 10am today were discussing this. Carolyn Harris, MP, was on. I missed the beginning so will listen on BBC Sounds when it's available later.
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Hello again ladies.
My story is similar to the woman in the programme called Rachel in that I turned to Louise Newson because I needed HRT and due to COVID lockdown I couldn't see my GP. My private clinic HRT journey began then.
I was with NH from the end of 2019 until about a year ago when I decided I couldn't afford the fees any longer and their treatment hadn't helped my main problems. During my time with NH I tried several combinations of Oestrogen and Progesterone plus some testosterone and I saw three different doctors (they seemed to last a year and then leave).
My complaint with NH is that I felt that the doctors were talking from a script and they were not the experts that I believed them to be. If I was an unusual case because I didn't respond to treatment as expected I thought they would have other suggestions for me to try but, as one of the Panorama ladies reported, they just wanted to continually raise my Oestrogen despite my painful breasts and spotting then bleeding.
Looking back I was just be as unstable emotionally on their regime as I am now on my much lower dose but at least physically I feel better!
To be fair to NH the doctors did their best to help me and it was suggested that I speak to their nutritionist and/ or their psychiatrist but that was all extra cost and by that time I had lost confidence in them.
It was interesting to hear one of the NH doctors say that Louise Newson herself is using a high dose of 300mg of Oestrogen, implying this must be safe however I read somewhere that she has had a hysterectomy so her concerns for her own health are likely different to most other women.
As I said before, I would personally be happy if my current safe, tried and tested HRT regime was effective enough to resolve all my symptoms, in other words just do the job that it is supposed to do!
Take care ladies and wishing you all well.
K.
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The younger woman who went to Newson after a hysterectomy is a strange case to say the least. Where was her oncologist in all of this? Why wasn't she having regular scans - in her case I would have thought it would have been MRI scans.
This was the piece in the documentary that was puzzling, the young woman having to have a hysterectomy after giving birth because of cancer. Was the cancer hormone related, if so the NHS would have refused her HRT.
She went instead to Newson and got HRT, really, did she go there under false pretences and if so, that would be gross negligence on Newson’s part if as she claims didn’t look into her previous history before giving her HRT, which resulted in another cancer.
This documentary left so many gaps, questions unanswered, it's like the last page in a book that's missing.
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Menopause Matters has released a statement regarding the Panorama programme.
It's currently on the home page news section but here's the statement as a pdf
View/download the statement here. (https://www.menopausematters.co.uk/pdf/mm_statement_1oct2024.pdf)
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Ayesha - - that's my query , often. Until recent years 1 had to have a referral from a GP to any Consultant - with a resume of the patient's full medical history whereas a Consultant may not think to ask and the patient may not remember or be prepared to reveal.
Tnx. Emma
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I saw the documentary and actually was very shocked at the approach. Because I’ve been doing other stuff I haven’t kept up with everything that’s going on but although the criticisms (of the blanket approach of oestrogen oestrogen and more oestrogen) are valid I was shocked at the vehemence with which they demolished the Newson clinic’s approach and particularly Louise Newson herself and I'm not sure of the motivation behind this.
I haven’t been a patient of hers either but the second half or two thirds of the programme almost portrayed her as some evil woman bent on causing harm to other women for the sake of money and disregarding safety, when in reality she has done a huge amount to publicise menopause more recently. Although I do disagree with her approach, I felt for her, personally as I thought it was very unfair. Also I disagree with private clinics that charge so much and for example admire the other specialists – like Paula Briggs and Heather Currie who spoke on the programme who as far as I know either don’t practice privately or maybe in a very limited way.
“The BMS need to follow strict guidelines to receive their funding” - someone said this earlier in the thread.
The point is that the BMS is the professional body specialising in menopause and as such is underpinned by science and evidence. This and other such organisations exist across the whole range of scientific disciplines and most have their own journals where the latest research is published. Because they are evidence based then there is necessarily a delay in new guidelines etc as research takes time. This doesn’t make them old-fashioned nor does the fact that they are a charity make them corrupt or only interested in funds. Their accreditation system necessarily will give approval to those who follow guidelines and licensed regimes so that we women know who to trust on the whole and who perhaps to be more wary of.
Here is what they say on their website:
“The British Menopause Society (BMS) is the specialist authority for menopause and post reproductive health in the UK. Established in 1989, the BMS educates, informs and guides healthcare professionals, working in both primary and secondary care, on menopause and all aspects of post reproductive health.”
“All BMS resources are evidence based, peer reviewed and they incorporate recommendations for best practice from both national and international guidelines.”
I can’t really add anything to some of the excellent points already made on this thread but to say I agree as we know that the NHS is woefully underfunded sending many women to private treatment and all the inequalities associated with that.
Also the point about dosage vs oestrogen levels and testing – agree with all that. However the specialists consulted did say that they individualised their treatments and were in fact prepared to prescribe unlicensed regimes in certain cases and therefore “think outside of the box”.
I think the main criticism if borne out in practice, of not looking at the woman’s complete health picture during consultations – may well be valid?
A bit off topic but the old issue about gels – someone said the gel was watered down to make it go further. This can’t possibly be the case. There are very rigorous quality control measures in place so any deviation from both the concentration of estradiol and total amount in a pack would not be picked up. Say what you like about big pharma but this is an absolutely fundamental principle. Variation in dose due to variable pump mechanisms may play a part but dose concentration is still the same. If a bit less comes out in one dose then more will need to be applied but should not result in more being used if you see what I mean (as an aside I find this with Lenzetto – the spray amount is variable depending on how much is left in the canister and the priming).
Hurdity x
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Menopause Matters has released a statement regarding the Panorama programme.
It's currently on the home page news section but here's the statement as a pdf
View/download the statement here. (https://www.menopausematters.co.uk/pdf/mm_statement_1oct2024.pdf)
This paragraph intrigues me:
If you’re on a standard licensed HRT dose and aren’t experiencing any problems,
just continue with your routine check-ups, usually done once a year.
What exactly do these check up consist of? Talking to someone from the other side of all desk is not a check up so presumably we are talking physical checks of some description?
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Menopause Matters has released a statement regarding the Panorama programme.
It's currently on the home page news section but here's the statement as a pdf
View/download the statement here. (https://www.menopausematters.co.uk/pdf/mm_statement_1oct2024.pdf)
Thanks and good to see a statement from MM
Hurdity x
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Menopause Matters has released a statement regarding the Panorama programme.
It's currently on the home page news section but here's the statement as a pdf
View/download the statement here. (https://www.menopausematters.co.uk/pdf/mm_statement_1oct2024.pdf)
This paragraph intrigues me:
If you’re on a standard licensed HRT dose and aren’t experiencing any problems,
just continue with your routine check-ups, usually done once a year.
What exactly do these check up consist of? Talking to someone from the other side of all desk is not a check up so presumably we are talking physical checks of some description?
These will vary. No not nessarily a physical check though I had a review recently that included a complete blood tests (for everything to check my health) as well as estradiol and Testosterone and I am having ongoing blood tests as part of the review and change in HRT dose and delivery.
The check surely should ask how you are feeling, whether any issues eg bleeding etc, maybe to discuss change in dose?
Hurdity x
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The younger woman who went to Newson after a hysterectomy is a strange case to say the least. Where was her oncologist in all of this? Why wasn't she having regular scans - in her case I would have thought it would have been MRI scans.
This was the piece in the documentary that was puzzling, the young woman having to have a hysterectomy after giving birth because of cancer. Was the cancer hormone related, if so the NHS would have refused her HRT.
She went instead to Newson and got HRT, really, did she go there under false pretences and if so, that would be gross negligence on Newson’s part if as she claims didn’t look into her previous history before giving her HRT, which resulted in another cancer.
This documentary left so many gaps, questions unanswered, it's like the last page in a book that's missing.
It's very strange. What type of womb cancer was it? I would be surprised if it was endometrial cancer at her age. She didn't mention what stage the cancer was either which would be an important part of her prognosis and possible recurrence of the cancer.
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This feels like it may be another WHI type watershed where treatment for many woman is adversely affected by what should be a discussion about a specific issue - ie off licence oestrogen.
I am also a Newson patient, forced to pay because my GP refused me HRT (in favour of AD's). The GP has taken on my prescription but refuses to prescribe at 75 rather than 50 despite me still being symptomatic at 50.
I'm now paying again to try testosterone as GP regards T inside the reference range (0.101 upwards) as being OK, again despite me being symptomatic in line with the nice guidelines.
This is another pop at LN after the "how dare she prescribe T" guff from a couple of months ago.
I really fear this noise is going to make it even harder for woman to access HRT going forward as it creates confusion in already under informed HP's.
75mcg is within the licenced prescription, why does your GP refuse to go over 50?
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How many micrograms are there in 2 pumps of gel which deliver 1.5mg of Oestrogen :-\
When I was on gel - oestrogel, 2 pumps was equal to 50mcg patch, that was before the gel changed, but I "think" it's the same dose.
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Some cancers are triggered by pregnancy - but clarification in any of these programmes and news articles should be a requirement. MayB the editors don't have any idea as to what readers need to know!
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The BMS and NHS are very quick to say 'there is no evidence for...'. Usually there is no evidence against either, the research simply hasn't been done and isn't likely to be either.
Perhaps someone whispered in their ear that the hrt bill is getting too big a new scare story was needed to reduce it.
Cynical? Moi??
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I haven't watched the programme but I am saddened and angry about the effect this could have on women's access to treatment.
If everyone was able to get the care they needed on the NHS there would be no need for private clinics, and people like Louise Newson who challenge the narrative that has existed for years that HRT is dangerous and women should just suck it up and take antidepressants, have helped far more people than they have harmed.
I have seen adverts by journalists wanting a sensational negative story about various things - they never seem to be looking for someone with a positive experience as that doesn't make good television.
Nobody is being forced to take treatment, everyone who goes there wants to try hormone therapy in a meaningful dose in order to address their symptoms or health concerns, and if it doesn't work or their approach doesn't suit you, just stop. No crime has been committed just because someone has had the opportunity to try a treatment that might have really helped them.
I am fully in favour of treatment doses being individualised even if this means some take a higher dose than allowed on the NHS, and of women being afforded the autonomy to choose a treatment that may have some risks, if it improves their quality of life and reduces other risks such as osteoporosis.
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Having listened to the episode I actually think the journalist has pulled a really dirty trick with the young woman with "womb" cancer.
This would almost certainly have been cervical, which is not driven by estrogen.
At 34, endometrial cancer is as rare as rocking horse manure, whereas cervical is common, and if they'd have been able to truthfully use the word endometrial cancer they would have been screaming it, not couching it in vague terminology like "womb" cancer which could be either.
It looks to me they deliberately conflated a case of cervical cancer, after which the young patient absolutely should receive HRT, and at a higher dose than a typical 50 year old, with endometrial cancer which is very different, knowing that Newson couldn't point this out without breaching confidentiality.
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The Daily Telegraphy have it as the front of their 'features' issue today. By Charlotte Lytton.
Not worth the paper it's printed on. Nil of nowt.
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Just as a side note on the yearly check up thing: I tried that with my GP a couple of months ago, they practically laughed at me as if to say "why are you bothering us" and when I suggested maybe a blood test as it had been over a year I was told they "don't do them".
I don't want to beat down on the NHS because we all know the strain it is under, but I do get annoyed at the suggestion that we get decent levels of treatment when we so often don't.
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My main issue with Newson is her over promotion that women must have oestrogen HRT to protect their bones and hearts, insinuating that those who do not are being ignorant and will come a cropper without it. It gets repeated everywhere, including this forum. The evidence is actually very weak on this for menopausal women (only younger women).
Totally agree with this.
This is particularly worrying for me, with metastic breast cancer. I don’t want to keep reading that I’m at risk of heart and bone issues because I can no longer take HRT. And where do all these oestrogen figures for good bone and heart health come from??
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Interesting to me as I have just started HRT for health benefits rather than against any symptoms. Surely a hormone we produce anyway can’t be that harmful. Panorama is known as Paranoia in our house for a reason!
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There was another strange case earlier in the programme with the woman who had consulted Newson during lockdown and apparently ended up with endometrial hyperplasia. She said they were trying to sort out (?) the hyperplasia and she might have to have a hysterectomy. This wasn't adequately explained either and sounds rather vague. Are we to assume she is is being treated with heavy duty progesterone and they are just going to "wait and see" if he goes on to develop endometrial cancer and then give her a hysterectomy?
Surely she had a biopsy and either cancer cells were detected or they were not. It seems highly unlikely that a consultant would take any risks and adopt a wait and see approach, they would immediately perform a hysterectomy..
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Nas, I think you have a point. Nick Panay has just headed up a White Paper for the International Menopause Society and he talks about this at quite some length. At the moment there simply isn't the research to say we should be taking hrt for preventative heart or brain (or even bone benefits except in exceptional circumstances) and should be taken really just to relieve menopause symptoms. Even transdermal if taken in too high a dose could have a negative impact on I think he said vascular health but don't quote me on that. It was along those lines. He talks about alternatives and how important other factors are and other options for women. I think you would find the paper quite reassuring. I found it by searching White Paper, International Menopause Society. And I think it's very interesting that it's Nick Panay who is very highly respected on this forum.
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Even the NHS thinks hrt improves bone health so I'm assuming it's true. I don't think there's any clear evidence either way about hearts? Of course not taking hrt doesn't mean you'll get osteoporosis, it just makes it more likely. There are genetic and environmental factors that may have a greater influence on your susceptibility.
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Thanks jaypo and Gnatty.
Your thoughts and shared information, are comforting.
I just wondered where the often quoted oestrogen figures on here have come from; whether directly from the NHS or from more influential medics, such as Nick Panay or Dr Paula Briggs for example.
I do agree though, that genetics and external factors can play a big part in influencing susceptibility. That’s why a well balanced holistic approach and attitude, is vital when discussing menopause and the effects of HRT. Otherwise women can become worried very quickly.
I wonder how menopause treatment is regarded in other countries ( particularly non European). Does HRT exist in Japan for example?
Just thinking aloud now :)
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Sorry Sheila yes you are correct re bone health. I think it's an international paper so not every country is on board with this. I think there are lots of risk factors involved. Particularly early menopause, being underweight, smoking, drinking, lack of weight bearing exercise etc etc
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I believe that for many years Japanese women didn't have as many peri or menopause with problems because they ate a soya based diet from an early age. Since the fast food outlets arrived, I read somewhere that they are more aware of hormonal changes. Now don't ask me where I read it ::) as it is several years ago. If I get the energy I will have a lookC.
Also: a lot of our young people will have bone density issues because of all the dieting and avoiding dairy products .......... as well as Education Authorities having sold off playing fields for housing!
I have noticed with regards bone issues that I am developing a Dowager's hump ........ from my paternal side. When tired or carrying a heavy tray of items I tend to lean forwards and don't always straighten up enough. When I see that old lady staring back from a shop window I have to pull myself up!
However: my grandparents and ancestors had a seasonal diet with lots of exercise: they didn't have 'treats' and there were no fruit/veg imports all year round; Brazli nuts at C.mas; no vehicles so everyone walked or cycled. Or rode a donkey ........ lots of fresh air for those living in the countryside. Don't know about how people were in towns or cities, not my families experiences.
Both my grandmas died in their early 80s, having worked hard in Service then raised families. One had bile cancer the other dropped dead from some kind of rare brain condition: rare at the age of 84 :-\
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[quote author=CLKD
What happened to Nick Panay?
He is still going and chair of this that and the other. I attend his practice although see another doctor as cheaper and more appiintments available.
Hope they are not going to panic!
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Tnx. Hopefully the medical profession will take a step back and review the programme as well as the letters to national press which should appear, and not rush into altering anything! I am waiting with interest to read letters to the editors.
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This feels like it may be another WHI type watershed where treatment for many woman is adversely affected by what should be a discussion about a specific issue - ie off licence oestrogen.
I am also a Newson patient, forced to pay because my GP refused me HRT (in favour of AD's). The GP has taken on my prescription but refuses to prescribe at 75 rather than 50 despite me still being symptomatic at 50.
I'm now paying again to try testosterone as GP regards T inside the reference range (0.101 upwards) as being OK, again despite me being symptomatic in line with the nice guidelines.
This is another pop at LN after the "how dare she prescribe T" guff from a couple of months ago.
I really fear this noise is going to make it even harder for woman to access HRT going forward as it creates confusion in already under informed HP's.
75mcg is within the licenced prescription, why does your GP refuse to go over 50?
She listed an additional risk of blood clots and that I wouldn't be able to stay on it very long. All incorrect but she wasn't having any of it.
I took the success of her taking on the prescription and I'm going back to see another GP. Baby steps :'(
It's hard work and it wastes appointments
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Where does the evidence come from that hormone therapy has long term health benefits regarding osteoporosis and heart disease?
It comes from a time when women were routinely prescribed physiological doses of estrogen, not minimal doses just to keep them off the floor, and only then if their symptoms are dreadful.
There are many, many published studies on this.
However many women on NHS treatment today are unlikely to be getting these benefits as the doses are so low, and blood tests are seldom done to confirm a bone protective plasma level of 250-300pmol/L.
I am in no way saying that everyone should take HRT or that nobody can have a healthy old age without it, but everyone should have the choice.
Certainly there is enough evidence to convince me it is the right decision - I don't know whether I would experience symptoms or not (I didn't with chemical menopause) but when the time comes I will just take my last birth control pill one day and my first HRT pill the next - since both my parents have osteoporosis I don't plan to ever find out what natural menopause is like.
I would also like all those affected by breast cancer to know that tamoxifen is also bone and heart protective, even though it may not help quality of life as much - it is a SERM with estrogenic activity in these tissues.
As a non carrier within a BRCA family I have given a lot of thought to what I would do if I got it, and I would regard tamoxifen as my "estrogen" in that instance.
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I never really understood the 250-300pmol level a day thing and how that gels with the studies done on low dose combined contraceptive pills and progesterone only pills. The former (ie Zoely) showed an average circulating estrogen level of 183 pmol and POPs lower at circa 110 pmol. Obviously there are a lot of variances, but they are the averages. I read quite a few of the studies that were conducted regarding bone health and the POPs and they all concluded that at these levels there was no additional risk to bone health. I never really understood how that fits with the 250-300 pmol a day that I've always heard about. If bone health was at risk lower than 250-300 I don't think women would be allowed to take POP pills as contraception for decades?
In case anyone is interested in having a read, here's the link to one of the studies:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7203087/
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Yes in the white paper I mentioned above Nick Panay discusses this very thing. Benefits can be obtained for bones on a really low dose of oestrogen and adequate bone protection is seen with 1 to 2 pumps of oestrogel.
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Gilla - I was just reading this thread and thinking that very same thing!!!
I've previously read the research on POPs and bone health. It really doesn't make sense with the 300pmol a day thing, branded about on here.
I know for example I feel hideous when my E is in the 300s and I have no progesterone. Yet when on the POP cerazette, to prevent ovulation and keep E levels steadily low, at 200 I felt much better.
Having felt as bad as I have over the last 7 years due to either too high E, unbalanced E or simply peri E fluctuations - I will never take E for the sole purpose of preventing other illnesses. If E can make me feel ill to the extent of has, I don't believe for one minute it is healthy for me.
But that's the crux of the matter. Everyone is very very different. Some need more E than others. Some get side affects from E, some don't. Some absorb HRT, some don't.
Surely the point of all this is that woman need options. Private clinics deliver those where the NHS is failing us. But - if those private clinics are a one way track of only prescribing the same doses to everyone - that's not good either.
I've personally used the marion Gluck clinic, because, i don't need extra E and, at the time I was aware the LN clinic would push E on me like the NHS do. But - someone has mentioned on this thread, and I've seen it mentioned elsewhere, that Newson are now supporting prog only therapy. Or at least one doc is.
Times change, knowledge is spreading. But ultimately we are being failed. How can the NHS think I need E, but the Marion Gluck clinic think I only need prog. Why have I had to resort to American Facebook groups for help???
Never mind taking down the 'opposition' through a BBC documentary, how about all working together to research and improve knowledge for us poor woman!!!
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I had always assumed that the high oestrogen dosing was about suppressing natural hormone volatility, like the combined pill. It possibly explains why some on very high dose have low levels when tested which makes them assume it’s an absorption issue. Receptors can down regulate when they are saturated. I guess it’s safe with the pill though as they always had sufficient amounts of progestogens and, prior to peri, we have tonnes of our own progesterone.
Also, as oestrogen is a growth hormone, surely that can kick off overgrowth of cells all over the body, not just the womb, hence the need to control it with progesterone even without a womb?
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It is definitely one possibility Dangermouse, but I do personally believe that high and low absorption really are A Thing. I use 1/4 of a 25 Evorel patch and I know from experiments/tests I've done that I get about 200 pmol from that, which is WAY over the average absorption. Some people say to me "that isn't possible" in the same way it's said that it's "not possible" that some women need very high doses. Just as the NICE guidelines are possibly too strict about higher doses being needed, there is also not enough options out there for those of us who need very small doses of things to feel well and cannot tolerate higher.
Crispy you're spot on - the crux of the matter is variability and everyone is very different. You have to have some sympathy with menopause specialists who are trying their best to navigate that. I just wish there was more research being done into these differences and variabilities
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It's so complicated Danger mouse. I see what you are saying but then how does that relate to women taking oestrogen only ( those of us who have no womb ) having a significant lower incidence of breast cancer?
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It is hard to have sympathy though Gilla.
I'm now under a gynae who specialises in meno. she is BMS and, as a result of that, can't see outside the set parameters.
An example is me suggesting low dose E could be trialled via one of the vag estrogens available. Now, I know she'll let me, if I want to. But...I was told categorically there is absolutely no systemic absorption. Yet anecdotedly on this forum there are plenty of woman feel systemic affects.
I just don't get why they are so blinkered.
I think that's it for me. I now guide my treatment but in doing so, I have to find experts that will let me try unconventional approaches and I have to manage how I engineer that and what I divulge. All very tiresome and consuming.
It's really opened my eyes to the whole medical system and how I'd have happily trotted along and believed everything I was told - before!!!
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tamoxifen as my "estrogen" in that instance.. I was given this drug to lower oestrogen production having had breast treatment. The lump was found at histology to have 'changes in the margins'. The drug almost killed me >:( and as it was on an 'in case' basis I stopped after 3/4 months. My sense of smell became acute: DH had made a Dundee cake and I could smell the tablespoonful of cold water every time I passed the pantry door: which was shut, the cake was in a tin with the lid on.
My friend died of womb cancer due to this drug. Both under the same Consultant Surgeon who told me and DH that 'none of my patients have developed womb cancer'. :-\. I didn't think to check any treatment as I went along .........
Medication is a minefield anyway, what suits some patients won't help others. Any1 read the letters pages in the Telegraph etc.?
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I was given tamoxifen after my primary BC to inhibit oestrogen production. Nasty drug it was too. Letrozole is worse! All a minefield and hideously stressful to navigate in the shit show of menopause and cancer.
Oh and if anyone has any brain fog remedies, please do share
( not testosterone).
Thanks 🙏
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For me the best thing better than any hrt is exercise, as in cardio. My favourite being crazy Zumba classes x
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Tnx Nas U R the 1st woman to seem to have been badly affected by the drug.
Gnatty - that sounds like hard work ;D
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Hello again ladies.
Regarding Tamoxifen I read that medics agreed that this was a difficult drug for many women to tolerate but they thought that their patients were taking it as directed.
A researcher decided to put this assumption to the test and looked at the number of repeat prescription requests that patients were submitting. It turned out that a large proportion of women simply stopped taking the drug and therefore didn't need to ask for the next months supply. The doctors were unaware of this believing that the women were doing as they were told but evidently they were not!
I suppose if a treatment is intolerable it will be discarded, no matter the proposed future benefits.
Take care ladies and wishing you all well.
K.
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That’s exactly it Kathleen. Sometimes one has to prioritise quality of life over quantity.
I did take tamoxifen for the required ( then) 5 years. That along with a radical mastectomy and chemotherapy, may or may not have contributed to giving me 14 years, before it metastasised.
The body is complex and we do what we think is right at the time.
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I think this thread is getting a bit off subject ;D
The fact is, whatever you think of HRT generally, we are all different and some of us need it - and need high doses of it. For LN to be castigated like this is just public lynching by the mob.
As someone currently on over 3x the max licensed dose (doing better than I have in the last 4 years), I now live in fear of my NHS GP refusing to prescribe what the Newson Clinic letter recommends - and then having to buy this privately. I would end up trying to get the max licensed dose from my GP (and the progesterone) and just topping up from Newson - but this would involve deceiving my GP somewhat as I'm not sure they would want me to be doing that or that they would continue to prescribe if they knew I was.
I don't think I could afford to buy my entire HRT prescription privately on this dosage. So that would be me f*cked. I've only just started to be able to sleep a reasonable amount and to get any deep sleep at all, on this dosage. I have no unscheduled bleeding, no sore boobs or high E symptoms - and when I stop my P each month for 5 days, it is a very light bleed. I will do bloods in a few weeks but, unless they are over 800pmol, I don't see a reason to reduce...
This is such a mess and it comes from under-funding women's health and a lack of research. We simply shouldn't be sitting here in 2024, going 'doh - is it safe to use this much estrogen? and how much progesterone do we need?'. The symptoms I'm experiencing are experienced by bazillions of women worldwide because I've found many online on Facebook and social media. Like me, they spend ages researching all kinds of other health conditions and getting sent from doctor to doctor - is it iron deficiency or restless leg? B12 deficiency? thyroid problems? low potassium? low calcium? low copper? is it hypnic jerks caused by some spinal issue? rheumatoid arthritis? FOR FOUR YEARS I have been bouncing around doctors with all this. For something which 50% of the population get... I now try to identify and rescue other women from this, so they stop going down rabbit holes of other conditions and trial some HRT. And this how it goes - women know more than doctors about it. Women tell other women and get there first. It's embarrassing for the medical profession. They should be ashamed (most of them) of their lack of knowledge. It is NOT okay. If they feel they are somehow losing control in response and there is some mass demand thing going on which is worrying them, the answer isn't to lynch LN - but to ask why it has reached this point...
SO - if they are going to be this behind, when the groundswell of women get with it and discover HRT and demand it - they had better be ready. They had better do the research. They had better have systems and protocols and guidelines which are not just hysterically conservative but which allow us to get all the benefits of it. Or there will be the absolute sh*t show mess and confusion which there currently is, society-wide, on a global scale....
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Nas, I also don't take systemic HRT and I get annoyed by some posts here that insinuate if you don't take HRT you will suffer badly in old age with all sorts of diseases. HRT can cause lots of issues and can make life hell for some, its truly a minefield but for others it can be an easy ride and that's great.
I am still waiting for my body to fall apart as suggested on here it would without HRT but genetics will play a part and a healthy lifestyle is paramount if you want a good old age. Also just to mention, I don't know anyone else who takes systemic HRT and are all doing well in old age.
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Ayesha, it certainly is a minefield, there’s no getting away from it. You are right, genetics and lifestyle are major factors; perhaps these need to be given more consideration. That said, we are all individual cases and one size doesn’t fit all. Hopefully our bodies won’t fail us any time soon! :)
Some need no HRT, some a little and others much more and that’s where LN comes in I guess. I do remember when my own MS was prescribing HRT to me, she was absolutely of the opinion “ lowest dose for the least time possible” But how can that be right, when the lowest dose, doesn’t scratch the surface for some?
Let’s hope that those who need HRT, still continue to take it and without a fight.
Which ever way you look at it LN has had her name and credibility, dragged through the mud, leaving a right royal mess! :-\
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I watched the Panorama programme with a lot of interest. I was a patient of John Studd in the 1990s when I was in my 30s and was amenorrhoeic due to being underweight. He prescribed me high doses of oestradiol (initially implants then later 200 mg patches) with Norethisterone as a progestogen. I developed atypical endometrial hyperplasia and had to have extensive high dose progestogen treatment and a Mirena IUS to try to rid me of the hyperplasia. I’m now 60 and possibly facing a hysterectomy given that I’ve struggled with endometrial hyperplasia ever since. I’m still on HRT (Estraderm MX50 and Mirena).
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Who will agree to on-going Research :-\ is there any incentives to the drugs companies to fund Research?
It's about time that women were listened to. It's about time that the BMS began advertising Conferences for medics and women to attend, not just in London but around the UK. Not just in Cities but in the villages too. Educating Nurse Practitioners who could hold discussion Clinics ......... with Minutes taken and published.
The BMS don't seem to be present on MM :-\
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Agreed - I've been fortunate in not requiring anything other than VA treatment. I do wonder whether it's because I have been taking anti-depressant medication since 1988 as well as anti-anxiety assistance in various forms when necessary: so any peri-anxiety may have been better controlled?
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Agreed - I've been fortunate in not requiring anything other than VA treatment. I do wonder whether it's because I have been taking anti-depressant medication since 1988 as well as anti-anxiety assistance in various forms when necessary: so any peri-anxiety may have been better controlled?
I wonder the same. I started hrt because of peri symptoms, quit after 14 months due to too many fluctuations, my E jept spiking and i just couldn't tolerate tge utrogestan. At the same time as quitting, I started an AD called fluoxetine (aka prozac), been on that since May and pretty much zero meno symptoms returned aside from a bit dry down below. Zero hot flushes at all and I'm sleeping really well too. It's weird. Good but weird.
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Dear Gilla 999!
I couldn't agree with you more!!!
I've been thinking about posting about my own experience with crazy perimenopausal hormone fluctuations for a while now.
I am 49 years old and my periods are every 22 days, very light and last only 2-3 days.
I have been struggling with night sweats, chronic insomnia, and very loud tinnitus for 1 year now.
This spring, I felt anxiety for the first time, which made me unable to function anymore, so I quit my job.
My gynecologist prescribed me HRT lanzetto spray 2 pumps and utrogestran 200mg for 12 days in the evening during the second part of the cycle. My levels of estrogen at the start of therapy was 16 pmol/L, progesterone 0.3 pmol/L, FSH 53.
After 1 month my symptoms only got worse. The gynecologist then advised me to increase the spray to 3 pumps. After 3 weeks, the symptoms continued to worsen. Then she advised me 4 pumps. My condition worsened to the point where I was getting absolutely no sleep and my anxiety was through the roof, mood swing horrible! Even the night sweats were back and tinnitus worsened.
Then the gynecologist changed my therapy to trisequence tablets, but did not inform me about the possibility of progesterone intolerance. Within 1 week I became so depressed that I even thought about suicide.
I stopped everything and decided, even though it cost me a small fortune, to monitor my hormones in a private clinic for a whole month according to the phases of the menstrual cycle.
Hormone monitoring was performed 1 month after stopping HRT.
I was shocked at how hormones fluctuated from one extreme to another.
At one point estrogen levels was 475 pmol/L, then 122, then 48, then 68, then 178. Progesterone fluctuated from 0.3 pmol/L to 7.2, FSH from 53 to 7.2, then 22 to 8.3.
I realized that as long as I am in perimenopause, when my hormones fluctuate to such extremes, I will not be successful with any HRT therapy.
I'm sure that experimenting with HRT would be torture for me at this point.
What I want to emphasize is that there is not enough talk and research about HRT during perimenopause, when hormones are in constant chaos and, unfortunately, for some women, the increase in estrogen does not help. For me it was horrible experience!
Please take my writing as my personal experience, because I do not want to convince anyone that HRT is bad or not to try it.
In my opinion, it is necessary to help women in perimenopause in a different way or with a different approach, which all specialists dealing with menopause should first discuss and decide which is the right way.
I wish all the ladies who are in peri to menopause all the best!
Hi I turned 49 on Sunday and my experience has been very similar to yours. I have started with very terrible insomnia, as well as as many perimenopause symptoms over the last year. The estrogen patch seemed to help at first, but got worse and worse to the point where I was barely sleeping at all.. I am praying to God that I get through the perimenopause time quickly so hopefully my hormone levels will even out after that. I have always been very high energy and high functioning and some days I feel like I can barely do a thing because I have had so many sleepless nights. It’s so frustrating because I have always slept very well previous to this. I do hope there is some light at the end of this tunnel.
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The fallout from the documentary continues. Today I received an email from a website called 'Rock The Menopause', a website recommended by my surgery practice nurse.
It asked if I would fill out a survey on the Panorama programme which I did and gave my thoughts, I used a lot of the words from this thread on how I and others felt it portrayed Louise Newson.
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For LN to be castigated like this is just public lynching by the mob.
As someone currently on over 3x the max licensed dose (doing better than I have in the last 4 years), I now live in fear of my NHS GP refusing to prescribe what the Newson Clinic letter recommends
I am not in a position to know whether LN should or shouldn't have been kicked off the BMS, nor whether the BMS guidelines are unreasonably conservative.
However, one would hope that GPs can tell the difference between Panorama and a medical journal. If your GP is treating Panorama as an authoritative source, you're in much bigger trouble than you realize, and HRT is the least of your problems.
[somewhere out there, a GP is writing "watched Panorama" under "continuing professional development". they are writing it in crayon. they are sticking their tongue out while they write.]
While having accreditation stripped by the BMS must be very damaging to LN's credibility - she hasn't been struck off. She's still a doctor. Other doctors watching this episode will have put themselves in LN's shoes.
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My GP previously wouldn't (couldn't?) prescribe above licensed dose without a letter from a menopause clinic (either NHS or private).
So if LN is discredited as a result of this programme, it's going to have an impact. I can ask for a referral to an NHS clinic but that will probably take years and there's no guarantee whoever I see is going to agree to high doses either.
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The BMS and NHS are very quick to say 'there is no evidence for...'. Usually there is no evidence against either, the research simply hasn't been done and isn't likely to be either.
Perhaps someone whispered in their ear that the hrt bill is getting too big a new scare story was needed to reduce it.
Cynical? Moi??
That sounds like something I’d say 🙂
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This feels like it may be another WHI type watershed where treatment for many woman is adversely affected by what should be a discussion about a specific issue - ie off licence oestrogen.
I am also a Newson patient, forced to pay because my GP refused me HRT (in favour of AD's). The GP has taken on my prescription but refuses to prescribe at 75 rather than 50 despite me still being symptomatic at 50.
I'm now paying again to try testosterone as GP regards T inside the reference range (0.101 upwards) as being OK, again despite me being symptomatic in line with the nice guidelines.
This is another pop at LN after the "how dare she prescribe T" guff from a couple of months ago.
I really fear this noise is going to make it even harder for woman to access HRT going forward as it creates confusion in already under informed HP's.
75mcg is within the licenced prescription, why does your GP refuse to go over 50?
She listed an additional risk of blood clots and that I wouldn't be able to stay on it very long. All incorrect but she wasn't having any of it.
I took the success of her taking on the prescription and I'm going back to see another GP. Baby steps :'(
It's hard work and it wastes appointments
I might be wrong but it sounds like she is out-of-date.
Best of luck with your GP.
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My GP previously wouldn't (couldn't?) prescribe above licensed dose without a letter from a menopause clinic (either NHS or private).
So if LN is discredited as a result of this programme, it's going to have an impact.
But she's lost her accreditation to the BMS, so she has been discredited (assuming BMS accreditation is essential for a menopause specialist, maybe it isn't). And it happened before this programme was released, therefore it can't have been as a result of this programme.
I can ask for a referral to an NHS clinic but that will probably take years and there's no guarantee whoever I see is going to agree to high doses either.
If you're a patient of one of LN's clinics, then her loss of accreditation is definitely going to be a blocker for you, because it makes her an example to other specialists that you otherwise could have turned to. But Panorama didn't remove LN's accreditation, because they don't have that kind of power. The BMS does. So the BMS would be the ones to challenge over this, because it would be their guidelines that are standing between you and your treatment.
What Panorama does have the power to do is scare people off treatment, and evidently they know this, because according to other posters here, they put up a sign like "don't just stop your treatment, teehee!" So Panorama are the ones to challenge over mis/disinformation, because they are the ones scaring people off treatment. Realistically, the best outcome might be a mumbled one-paragraph apology published in some obscure place. But imagine some dream outcome whereby Panorama puts out another program consisting entirely of apologies and debunking this specific episode, and they publicize it widely and aggressively, and everybody who got misled by the original episode changes their minds. That would be awesome. But it still wouldn't get LN her accreditation back, nor would it change the BMS guidelines.
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I was a patient of Newson Health and my experience was the complete opposite of the Panorama programme. I was prescribed progesterone only. No oestrogen at all. After 2 years they tried to introduce oestrogen starting with half a 25mg patch but I still couldn’t tolerate it, so continued on with progesterone only.
If I have any criticism of them it’s that I did feel they tried to push testosterone at every appointment.
However I can’t fault my treatment at all. Wherever I was in the World, they replied to my emails and questions (no charge)and at my last appointment they suggested stopping HRT to see where I am and only get back to them if I felt I needed to. I actually feel much much better without HRT so I don’t need to go back.
I was really sad to see and read that some people have the opinion Newsons are pushing high doses of oestrogen. That wasn’t my experience or the experience of friends I referred there when the NHS were failing them. Also, at no time did they suggest HRT would provide long term health benefits to persuade me to keep taking it. They really didn’t push it all. They focused on my needs only.
I hope the programme hasn’t put anyone off seeking their help if they need it. I couldn’t recommend them more highly.
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I think you're giving the BMS way too much power in all this. It's just a charity bringing together doctors who specialise in the menopause and offering education and training - and membership.
It's not a requirement to belong to the BMS - and neither, in my eyes, is it a marker of a 'good' menopause doctor necessarily, at all. Just as, in the US, there are 'NAMS' (North American Menopause Society) doctors still prescribing oral estrogen and 'shortest dose for shortest time' stuff. Just because an organisation exists and proclaims itself THE definitive organisation for something, doesn't make it into that.
I don't have much time for the BMS because I've seen a BMS certified menopause doctor before the Newson Clinic who had all kinds of crap information, told me I couldn't have local estrogen AND systemic HRT. Told me I couldn't have 2 types of local estrogen (Vagifem internally and Ovestin externally) and she'd 'never heard' of that before. Expressed surprise that I'd just come off the pill and could feel twinges and sharp pains from my ovaries as a result ('but how do you feel your ovaries?') and so on.
So no.... Doctors have to prove themselves in conversation with me, that they know about the menopause. That they know more about it than me (which frankly is quite a lot, by this point) and that they will work with me and not just exercise power and tell me what to do. I don't really give even a tiny little sh*t about whether they are a member of the BMS, which is an organisation which until a few years ago thought the WHI was THE BOMB and has had to be dragged screaming out of conservative-land and into modern menopause care - embarrassingly by people like Louise Newson and Davina. They then looked incredibly behind with things and now are on a vendetta as a result. It's like we're still in the school playground.
Every time I see someone write 'but LN has lost her BMS accreditation' as if it therefore proves she's some kind of quack, I'm like... what...? What did you really think the BMS is?? She hasn't lost her licence to practise medicine.
So no, she hasn't been 'discredited' officially at all. And, even if - in the eyes of my GP - she has, that (as you say) happened last year. But doctors are easily influenced (sadly) and making a song and a dance about it via Panorama can easily lead to them suddenly deciding this is a very bad thing, having not cared about it before.
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There's very roughly the same number of women over the age of 45 in England as there are children under the age of 18.
It's a national outrage that we don't have something like a menopause tsar (instead of some crappy employment champion or hrt supply investigator because this is too ad-hoc and piecemeal). Can you imagine if we didn't bother to have a robust approach to education or work and pensions? Women once again getting the mucky end of the stick, being told they're not important enough, even though, for example, evidence shows that post-45 women are far more at risk from mental health issues, especially those leading to suicide.
And in the meantime, on the side, we've got rank profiteering and celebrity status advocates. It's not helping.
Panorama or not, what this highlights is a Russian Roulette system of supposed healthcare that affects millions.
We need properly funded research and resources. Anything else is just bizarre tinkering.
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I’ve just had an interesting private consultation for thyroid and meno. My 25mcg estradot patch wasn’t sticking well and I ditched it for a week because of spotting but my bloods are showing my blood oestrogen level is 18 and I have no testosterone. Potentially I’m a poor absorber of patches BUT the GP was able to listen to my symptoms AND cross reference with my blood tests it’s expensive though. It’s not necessarily just menopause causing issues women need a much better holistic health assessment service. Anyhow at least I now know why I feel so rubbish. I have no sex hormones whatsoever although this is exactly what mother nature intended the menopause to do….🙈
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It's not a requirement to belong to the BMS - and neither, in my eyes, is it a marker of a 'good' menopause doctor necessarily, at all. Just as, in the US, there are 'NAMS' (North American Menopause Society) doctors still prescribing oral estrogen and 'shortest dose for shortest time' stuff. Just because an organisation exists and proclaims itself THE definitive organisation for something, doesn't make it into that.
Ah OK, thanks for clarifying that.
I think you're giving the BMS way too much power in all this. It's just a charity bringing together doctors who specialise in the menopause and offering education and training - and membership.
All I really meant to say was: you were worried that LN would be discredited because of this Panorama episode, and your access to treatment would be blocked as a result. And I was trying to say that Panorama doesn't have the power to do that. And now you've explained that BMS doesn't have the power to do that either.
What Panorama have the power to do is kind of the same power that sensationalist newspaper headlines have, to influence the opinions of uninformed people who walk past them on their way to the Tube. If you know nothing about HRT, and you see enough headlines screaming "HRT BAD", you're going to assume HRT is bad. Which brings me to your final point:
But doctors are easily influenced (sadly) and making a song and a dance about it via Panorama can easily lead to them suddenly deciding this is a very bad thing, having not cared about it before.
Well, as I said, I hope that the majority of actual doctors would not be dumb enough to mistake a TV documentary for an authoritative source. But by the law of averages, some of them could be. However, I think that the people most likely to be negatively affected by the Panorama episode specifically, are patients or potential patients who get scared off by it.
Anyway, I'm sorry your GP is letting you down.
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Hello again ladies.
I don't think Louise Newson will be too worried about the Panorama programme or the decision of the BMS. There are plenty of us who shop around for health care and her clinic is firmly established. The Panorama team found some patients who had a bad experience and highlighted their stories which is what journalists do for a living.
The Panorama headline asked if the menopause was big business and it is, too big to be brought down by this programme.
Talking of business I wonder about the Rock the Menopause website? Could they be a commercial organisation looking to build a database by asking practice nurse to mention them to their patients?
Menopausal ladies represent a large and lucrative market so it's no surprise that we are the target of various businesses but that's okay, we are grown ups and we can make our own decisions about who to trust and how to spend our money.
Wishing you all well ladies.
K.
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Talking of business I wonder about the Rock the Menopause website? Could they be a commercial organisation looking to build a database by asking practice nurse to mention them to their patients?
Most definitely!
The site is run by Uniphar Commercial (E4H) Ltd whose own website boasts "We deliver innovative digital and in-person services, which ensure our pharma clients achieve commercial success".
There's nothing underhand, they very openly encourage people to sign up to "become a menovist" and note that "By signing up, you agree to receive news, stories and updates from Rock My Menopause and their partners"
Data gathering indeed for that large and lucrative market you mention!
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I signed up with the Rock My Menopause website months ago and the first I heard anything from them was yesterday when asked to fill in a questionaire re the Panorama programme but so far all I see is advice on menopause and nothing else. They have a FB page which I won't join but it all seems perfectly ok with no hidden agenda.
Since Panorama was aired the tide seems to be turning against the programme with criticism from many for the scaremongering it has caused, for me it was disgusting, headline grabbing and sensationalist journalism. I don't think Louise Newson has anything to worry about.
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Agreed - I've been fortunate in not requiring anything other than VA treatment. I do wonder whether it's because I have been taking anti-depressant medication since 1988 as well as anti-anxiety assistance in various forms when necessary: so any peri-anxiety may have been better controlled?
I wonder the same. I started hrt because of peri symptoms, quit after 14 months due to too many fluctuations, my E jept spiking and i just couldn't tolerate tge utrogestan. At the same time as quitting, I started an AD called fluoxetine (aka prozac), been on that since May and pretty much zero meno symptoms returned aside from a bit dry down below. Zero hot flushes at all and I'm sleeping really well too. It's weird. Good but weird.
This is possibly because the neurological symptoms are not directly a result of sex hormone dis-regulation, but because our adrenal glands now have the added burden of producing sex hormones, as the ovaries pack up. Stress hormones become more volatile, particularly if there are other adrenal stressors such as emotional stressors, nutritional deficiencies and even well intentioned fasting regimes.
Progesterone can buffer some of this via the GABA receptors, and also can keep oestrogen from spiking too high but, as oestrogen is excitatory, it’s certainly not going to help you to relax (unless it’s the high dose oestrogen strategy to shut down your own volatile oestrogen receptors where that is actually creating the anxiety etc.).
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I'm too exhausted (as usual) to say a lot.
My jury is out. Louise Newson was always going to be a target for journalists looking at menopause as her head was well above the pulpet. Panorama's reporting didn't seem balanced at all. I haven't been to the newson clinic yet, I will probably think very carefully about going, but I would definitely still be considering her clinic when making a choice.
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Agreed - I've been fortunate in not requiring anything other than VA treatment. I do wonder whether it's because I have been taking anti-depressant medication since 1988 as well as anti-anxiety assistance in various forms when necessary: so any peri-anxiety may have been better controlled?
I wonder the same. I started hrt because of peri symptoms, quit after 14 months due to too many fluctuations, my E jept spiking and i just couldn't tolerate tge utrogestan. At the same time as quitting, I started an AD called fluoxetine (aka prozac), been on that since May and pretty much zero meno symptoms returned aside from a bit dry down below. Zero hot flushes at all and I'm sleeping really well too. It's weird. Good but weird.
This is possibly because the neurological symptoms are not directly a result of sex hormone dis-regulation, but because our adrenal glands now have the added burden of producing sex hormones, as the ovaries pack up. Stress hormones become more volatile, particularly if there are other adrenal stressors such as emotional stressors, nutritional deficiencies and even well intentioned fasting regimes.
Progesterone can buffer some of this via the GABA receptors, and also can keep oestrogen from spiking too high but, as oestrogen is excitatory, it’s certainly not going to help you to relax (unless it’s the high dose oestrogen strategy to shut down your own volatile oestrogen receptors where that is actually creating the anxiety etc.).
That's really helpful to know thank you, I hadn't thought of adrenals in playing a part. Just that I feel the most emotionally stable that I have in a decade (with and without hrt). I also supplement with GABA once my period cones as, for some reason, the drop in progrsterone when I bleed, is the worst few days for me. Mine isn't pmt now, it's that I have a couple of tougher days when I actually get my period and I put that down to the progesterone dropping and consequently GABA. I find liposomal GABA plus GABA tea really helpful for those couple of days.
Now just to sort out the dry vagina 🤣
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Hello again ladies.
I have just received an email from Newson Health in response to the Panorama programme.
It was sent to me as they believe I am still a patient, even though I haven't dealt with them for about eighteen months,. I should probably contact them and explain that I am now obtaining my HRT etc from my GP surgery.
The email basically refutes the claims of the programme and reassures all patients that NH is committed to providing the best quality care.
I imagine a similar message has been posted on other NH platforms.
I don't think the Panorama programme will negatively impact the clinic and I am sure that many ladies will have a good experience if they choose to contact them.
Take care ladies and wishing you all well.
K.
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I have to congratulate you all on very levelled responses more eloquently put over than I could possible do :thankyou:
Why isn't the BMS in the News more, why aren't they contributing to MM? Why does the organisation need 2 have Charitable status :-\
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Its interesting that there are so many articles in newspapers written by women journalists and their experiences, like how the NHS is letting women's health down, etc and with reference to the Panorama programme. Apparently one was listening to Women's Hour and had to resist the urge to throw her shoe at the radio. I couldn't read the articles because these days you have to subscribe and I won't be doing that!
Suffice to say that LN has a lot of support out there, I am happy to say.
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I've bought the national papers this week and can't find any 'letters pages' relating to the Panorama program although I haven't opened today's Telegraph thus far.
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For info I've received this standard response to my complaint to the BBC about the biased and unbalanced journalism relating to the programme.
They seem to have omitted to respond to my request for them to investigate the poor state of NHS menopause care that leads so many people to have up access private treatment 🙄
Thank you for getting in touch with us about the Panorama programme ‘The Menopause Industry Uncovered’ which was broadcast on Monday September 30.
The programme explored the growth of the menopause industry, from menopause care through to the products marketed to women as being able to help alleviate their symptoms.
With regards to HRT, the programme was very careful to make clear throughout that oestrogen has been shown to be safe and effective at licensed doses, up to 100mcg a day, and that it has helped many women with menopause symptoms. It was also made clear that you should not stop taking any medication without speaking to your doctor first.
We are confident our investigation was in the public interest and that it was fair to Newson Health. We stated within the programme that Newson Health has seen 45,000 patients since 2020 and many women have been helped. Dr Newson’s own contribution to changing the face of menopause care was also acknowledged.
The programme highlighted concerns about prescribing practices at Newson Health after speaking to 15 former patients who told the BBC they had experienced complications following treatment there. In the course of their research, Panorama discovered the British Menopause Society has removed Dr Louise Newson from its register of menopause specialists because of concerns over high dose, off-label prescribing. This led to the BMS to issue a joint safety alert last year with five other specialist organisations, including the Royal College of GPs and the Royal College of Obstetricians and Gynaecologists.
In addition, Panorama discovered that the Care Quality Commission is currently looking into “information of concern” at Newson Health clinics “to understand if there are any risks to people using the service and whether further action is warranted”. Clearly, it is in the public interest to report on these concerns, which are being expressed not only by women themselves but by a wide range of experts in menopause care and some former Newson Health doctors.
The programme made clear that General Medical Council guidelines allow specialists to prescribe above licence if they think it may help a patient. Clinicians should explain the risks so they can make an informed decision. However, undercover recording of two consultations with Newson Health clinicians found the journalist posing as a patient wasn’t informed that the safety of above licence doses of HRT hasn’t been established through clinical trials. This was not made clear in the follow-up information sent afterwards.
The programme-makers invited Dr Newson to take part in a filmed interview for inclusion in the programme, but she declined. Newson Health provided written responses to the points raised by the programme. These were on behalf of the clinic, Dr Newson and the two doctors whose consultations were included in undercover filming, and these were fairly reflected throughout the programme.
The recent rise in the use and popularity of menopause services and products has highlighted the need for more regulation and clear guidance to protect women, and we’re confident the programme was successful in stressing the importance of this.
Thank you again for getting in touch.
Kind regards,
BBC Complaints Team
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"undercover filming" - wonder where that took place?
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They showed it, it was filmed during an online appointment, and the clinician was clearly not doing their due diligence with the mystery shopper.
Interesting that LN declined to be interviewed, as when they have reported against the BHRT clinics prescribing off licence and compounded products, Marion Gluck was happy to be interviewed and it provided the balance that this programme clearly lacked. By declining it comes across as arrogant as she is very media savvy and would have come across well.
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Tnx. Where has the BMS been all these years, it's been open that higher than 'usual' doses have been prescribed :-\
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Warwick Hospital gynaecologist says he and colleagues applaud exposé on Newson Health
https://www.stratford-herald.com/news/amp/panorama-investigation-and-probe-into-hrt-clinic-9385837/
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"undercover filming" - wonder where that took place?
Can you imagine undercover filming at many of our GP appointments 🙄🤣
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Interesting that LN declined to be interviewed, as when they have reported against the BHRT clinics prescribing off licence and compounded products, Marion Gluck was happy to be interviewed and it provided the balance that this programme clearly lacked. By declining it comes across as arrogant as she is very media savvy and would have come across well.
My exact thoughts. It doesn't look good not giving an interview, has she said anything since the broadcast or is she letting her fans do the talking for her.
Her reputation slaughtered in the Stratford Herald by the Gynae from Warwick Hospital!
https://www.stratford-herald.com/news/amp/panorama-investigation-and-probe-into-hrt-clinic-9385837/
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She has posted on all her social media about it and today all patients at Newson Health got an email about it.
Hello,
As a patient of Newson Health, we wanted to write to you personally following recent media coverage of our clinic. It is incredibly important to us that you remain confident in the advice and care that you receive from us and hope that any concerns you may have are answered here.
We were very disappointed by the portrayal of Newson Health in the recent BBC Panorama programme and do not feel that it accurately represents the work of Dr Newson, Newson Health or any of our menopause specialist clinicians. As the UK’s largest menopause clinic, we use our wealth of clinical experience and data, as well as all the available scientific evidence to treat you on an individualised basis, to provide the best possible menopause care.
We would like to reassure you that we adhere to NICE (The National Institute of Clinical Excellence) guidelines and operate with the support of all UK regulatory bodies. We are confident in the quality of care we provide, and continue to engage and cooperate with all regulatory bodies, including CQC.
Our clinicians are highly qualified doctors, nurses and pharmacists with specialist training in menopause care, enhanced by our shared experience from seeing more patients than any other menopause clinic in the UK. Whilst Dr Newson’s accreditation to the British Menopause Society has been questioned, we would like to assure you that she exceeds all the necessary qualifications and requirements to hold this, but it has been removed by the BMS without a satisfactory explanation or any ability to discuss or appeal it. Its removal does not impact her ability to act as a menopause specialist in any way.
We are committed to providing an excellent service and have been working hard in recent years to continuously improve this. Although we have a very low level of complaints (less than 0.5% of all appointments) we are sorry if any patient feels unhappy and hope that you feel able to raise any questions or concerns with us. Please do contact us directly if you have any on 01789595004.
We remain committed to the provision of safe and effective menopause care and education for all women and provide a wealth of free information and educational resources some of which are signposted below. We look forward to continuing to increase awareness of and access to menopause care in an area of health that is chronically underfunded, undervalued and under-researched.
Should you need any help or support please do get in touch.
Click HERE to read an explanation of why various doses are prescribed to different people.
For any other questions or further information, click HERE to access our wide range of resources.
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Tnx Joziel.
Of course a charity [BMS] wouldn't want any1 to 'bring them down' .......... however, in the UK 1 is innocent until found otherwise!
Is Louise continuing with her speaking tour?
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Louise Newson also has her own charity, The Menopause Charity, which I presume is for her non-profit work. Basically, if you can prove that your organisation is for public benefit (like most colleges and schools are for the benefit of education), you can receive public funding, grants and donations. As long as you reinvest the funds and do not make a profit.
Most regulatory bodies work on the same basis and are held accountable by their Governing Bodies and Trustees.
BMS also have a patient arm called Women’s Health Concern which is why they have 2 charitable statuses.
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I am not sure why they don’t just start routine womb scans for women on over 100 O at Newson Health - surely that will satisfy anyone’s concerns and is exactly what BHRT clinics do, when using more O or less P. The patients have to pay for the scans anyway so not sure why they have been taking such a risky approach, I had just assumed they all did that, including Studd.
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I think I got caught up in all this and now pay the price!
Mid 2018, at my local Menopause clinic, I was told my dose was too high. Six years later, one after another issues appearing since, it wrecked my body that was nothing wrong with before.. including my bones!
Few months ago I had a young receptionist at my surgery questioning my privately increased back dose...
My GP tells me that HRT does not protect bones...
Front pages of the Guardian wonder if women should get prescribed hormones ..
To me, it sound like the usual:
Man envy that a woman is popular and makes money!
Patriarchy!
..yippee!
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Headline article in Daily Mail online this morning.
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Mary G, you stole the words right out of my mouth.
If the NHS took women seriously then private clinics working off licence wouldn't be necessary.
And it amazes me every time I go on this forum just how confused we all are about the HRT we've been liberally prescribed on licence by the NHS. Why aren't we better informed by the clinician that's prescribed it? Why are we all grasping at ideas and stories? Do people with diabetes, or epilepsy have to do this?
And why no monitoring? HRT can cause cancer, yet there's literally no monitoring pathway in existence in the NHS. Reactionary, cross your fingers dangerous, reactionary care.
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I don't think higher doses should be 'forbidden' to women if there is evidence to back up that that's what she actually needs (and the fact that there is no room to allow for that within the NICE / NHS guidelines is a huge problem). But having a blind belief that all peri symptoms are down to needing higher and higher doses of Estrogen - which is the culture that seems to exist from within Newsom - is equally a big problem.
Panorama will have had their legal teams heavily involved ensuring they're portraying it accurately, for it to get onto their radar there must be something there.
Gill999, I think we know that journalists and the media in general make s*** up. Their modus operandi is to create fear and uncertainty, and women have become uppity about their right to feel well as they age, it's a hot topic, too, so ripe for the introduction of fear and doubt. I will not be watching the show.
I use the Newsom regime, I've had my endo' scanned, all is well.
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Be careful of scaremongering Aubrey, you’ve just said in your post, HRT can cause cancer. This is a public forum.
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This part of today's Mail interview sums it all up:
"She booked an appointment with Professor Nick Panay, ¬president of the International Menopause Society.
Her levels of estradiol, the main form of oestrogen, were on the low side. She went on to be -prescribed a higher dose of 300 micrograms and began, she says, 'to feel the best I've ever felt for many, many years'.
When the BMS first objected to what Louise was doing, she asked them straight, why?
'I said, 'If it's about dosing I'm on a higher dose because Nick Panay prescribed it for me. If I use less I get migraines, joint pains – I feel dreadful. How can he [Nick] do it and I can't?'"
As I said in earlier post on this thread, Newson hasn't pioneered anything - which is not remotely to denigrate her - she has simply more or less propagated the John Studd approach to a mass audience (even Panay isn't an innovator as such but in turn is broadly practising the Studd M.O, understandably as he studied with him.)
But as Newson says, if 'he' prescribes higher doses in some instances it's perfectly respectable, but it's a different story when 'she' does.
In any case it's good to see that even the (presumably) ultra conservative DM readers are vastly in support of Newton.
With all that said, I do think the LN doctor on the programme who said 'it's fine, Louise Newson herself takes a large dose' was really misguided, not to say foolish, and handed the 'enemy' a weapon on a silver platter. It's just not a professional thing to say in a consultation and meaningless given that every patient is different.
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Yes, that’s similar to my point, it would be simple to make the higher dosing safely prescribed and monitored for the few who need. It seems unnecessarily messy to just offer it to everyone not feeling good on the usual doses, due to the matter of fact attitude that as it makes her feel good, it should make every woman feel good.
I think a lot of Studd’s patients became frustrated with him for the same reasons.
She comes across well in this new article but it does feel as if she has waited for the weekend to make her response more dramatic in a ‘broken her silence’ strategy. I suspect she will have been advised by the ITV media people as this also has consequences to their programmes such as This Morning and for all the celebs on Loose Women who are patients of hers, and support her, to also maintain their reputations.
She probably should have just stayed off TV like Studd, as it’s a rabbit hole full of warrens, and let her celeb patients do the talking.
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LN has had a hysterectomy (if I recall right) so her being prescribed a higher dose isn't going to cause endometrial cancer, no matter what dose she gets prescribed. So that's a silly line of argument.
And I'm all in her favour.
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Be careful of scaremongering Aubrey, you’ve just said in your post, HRT can cause cancer. This is a public forum.
Hi Nas, I'm not scaremongering, I'm stating a fact we all know, which is why we're on here trying to get it right. Panorama is scaremongering and could lead to many women coming off their HRT regime for no good reason.
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I am more angry with Louise Newson for not putting up a fight, she really should have appeared in the programme to put up a defence.
As someone said here, why wait and give an interview to a newspaper, her reputation is in tatters.
The position statement I often quote and copy on here has been invaluable to me and others in understanding GSM headed by Louise Newson and other eminent people in their field. Fortunately, there is no controversary regarding topical VA treatment relating to the dosage, my own surgery agreeing with how I am managing my GSM. But I did have second thoughts on whether I should continue posting the links to the Position Statement simply because it has Louise Newson's name at the top of the page.
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Hello again ladies.
The Panorama programme also suggested that women attending private clinics do not always get the best after care if things go wrong.
In my own case I felt let down because the doctors I saw at Newson Health had no explanation for why I wasn't responding as they expected. They also seemed relaxed about all the bleeding I was having on a high dose. Eventually I came to the conclusion that the doctors I saw there weren't the experts I believed them to be.
I have since seen an NHS consultant who recommended the lowest dose I could manage as, in his thirty years experience ' less is more'. I am now on the equivalent of a 50 mg patch and still having issues but I will see my Nurse Practitioner who runs the menopause clinic at my GP surgery. She has in the past arranged a scan and blood tests for me and now wants to monitor my progress.
My experience with Newson Health may have been different because I was a long way into post menopause when I became a patient, perhaps they are more used to prescribing for peri menopause women?
I still think there is a place for the private clinics and they are needed due to the dire state of the NHS. Our reproductive system can cause a variety of problems over our lifetimes so why not have a variety of care available to us.
Wishing you all well ladies.
K.
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I think LN was right not to appear on panorama even if she was invited. It was a hatchet job with biased selection of patients, they weren't interested in her opinion or in putting forward balanced views. Perhaps she'll appear on tv next week with an opportunity to put forward her side. It may end up backfiring on the bms as it becomes more obvious how many women are getting inadequate treatment from the NHS. LN wouldn't have a business if everyone received good treatment on the nhs. I hadn't realised the bms was behind the cqc investigation.
I also think LN could help herself. She could insist that higher doses are prescribed either where there are blood tests to prove poor absorption or the patient has an annual scan that they pay for to show it's safe.
And perhaps some recognition that there are some patients that the medical profession just doesn't know how to treat.
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I'm not angry at LN I think she was in a godawful position. The BBC were likely not giving her any control or assurance about how her content would be used.
I also wonder whether, even if she was given patient consent to talk about individual cases, she perhaps felt that it was inappropriate. Good doctors have high ethical standards and whilst the BBC were happy to arguably use them as they did (vague descriptions etc), maybe LN thought it wasn't appropriate? Maybe he insurers told her not to.
From what I see tends to avoid criticising the NHS and certainly those that work hard within it.
I don't think her reputation is in tatters. I see that there are many woman and medics supporting her. I'd really like to see Mariella, Davina et al pick this up and move forward a sensible debate about how meno care/ womans health care generally can be improved
I fear though that we are already seeing the ripples in terms of womans fear and confusion re HRT treatment, that's really worrying
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Another couple of articles have appeared on Mail Online re more patient complaints from Newson Clinic but the one titled
“Doctors fear women are encouraging each other on social media to take dangerously high amounts of HRT drugs” definitely has quotes from this forum on it!
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Another couple of articles have appeared on Mail Online re more patient complaints from Newson Clinic but the one titled
“Doctors fear women are encouraging each other on social media to take dangerously high amounts of HRT drugs” definitely has quotes from this forum on it!
Yup and we flog it in the changing rooms like anabolic steroids 🙄😱
I've got some spare progesterone if anyone wants to buy it no questions asked....🤣
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That's interesting Dangermouse. I've often thought people can say whatever they want on this forum - which is great free speech. But, as it seems linked to the BMS (think someone posted that in relation to LN being asked to take hers down) I often wonder how many woman take what they see as gospel.
I, for one, am disappointed that there is never any 'expert' opinion added on threads, despite the forum being endorsed by a meno doc and the BMS.
It literally runs the same as all the FB groups where people run off at all angles about doses and anecdotal experience.
For this reason, I can't really see why the BMS were concerned with LN setting up her own. They offer nothing on this one. ::)
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I haven't read anything about Panorama programme in the 'letters pages' of the daily media. I won't prescribe to on line ....... which probably says something about how the media have reacted?
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Another couple of articles have appeared on Mail Online re more patient complaints from Newson Clinic but the one titled
“Doctors fear women are encouraging each other on social media to take dangerously high amounts of HRT drugs” definitely has quotes from this forum on it!
I’ve just found the one title that you mention & it was published in August 2023 with 7 comments so seems to have gone under the radar at the time.
If Newsom private patients agreed now might be a chance to gather some research data.
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Hello again Ladies.
CrispyChick - It would be great if MM could benefit from the active support of meno specialists and the BMS.
I don't subscribe to meno Facebook groups but clearly there are a lot of women seeking help and some of them are being misinformed. 'Nature Abhors a Vacuum ' as they say so it is no surprise that we rely on each other when we are struggling.
Take care ladies.
K.
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Ah right, there was a huge link in the other article, so I assumed it was also new.
Yes, Crispy, LN said in her interview that the BMS told her that as we already have Menopause Matters, why would we need another website.
We are certainly left to get on with it here and, as the doctor who runs it is a witness for the prosecution, there will not be any expert opinions shared here, although there may be a statement on the main part of the website.
I guess that one of differences between a medic recommending something and a user doing it, is that the latter is coming from a place of personal experience and will, passionately and well-intentionally, want the other person to feel better. The medic has to take the emotion out and stick to regulations and/or take suitable mitigating steps when going off-licence. They also have to be the one legally responsible when signing off on prescriptions.
Separate from her patients who have complained about the service they have received, I don't think that the NHS clinicians who are complaining are concerned in a 'Doctor Death' way, where they feel that her ego is damaging her patients and wanting her struck off. Their angst is that she is going on TV and radio, fuelling women to demand high doses (just on the basis that they are not yet feeling better) that they have to then argue against, as they may not have the resources to manage the risk.
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I, for one, am disappointed that there is never any 'expert' opinion added on threads, despite the forum being endorsed by a meno doc and the BMS.
/quote]
Me too - I agree with you
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Hello again Ladies.
CrispyChick - It would be great if MM could benefit from the active support of meno specialists and the BMS.
I don't subscribe to meno Facebook groups but clearly there are a lot of women seeking help and some of them are being misinformed. 'Nature Abhors a Vacuum ' as they say so it is no surprise that we rely on each other when we are struggling.
Take care ladies.
K.
I don't do facebook either and yes it would be very helpful if MM could benefit from the active support of meno specialists and the the BMS.
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We are certainly left to get on with it here and, as the doctor who runs it is a witness for the prosecution, there will not be any expert opinions shared here, although there may be a statement on the main part of the website.
Even bearing in mind that tv editing can be distorting, I was shocked and disappointed by the 'witness for the prosecution' and am glad someone has pointed this out.
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The thing is that there are many of us who do need higher dosages and for sure, women should be allowed to try those if they are suffering life-altering symptoms and have tried lower dosages first - especially if their bloods are not especially high. And if we need to encourage each other on social media to do that, we will.... If there was adequate decent healthcare we wouldn't need to impart this kind of information to each other on social media.
By the way, I'm in many US HRT groups on FB as well, because I like to know what's going on elsewhere in the world - and I can confirm that the top online menopause providers in the US - like Defy and Elevate - aim to get women into the range of 100-150ng which is 450-650pmol. This is exactly what my Newson doctor aimed to do, too. So Newson isn't doing something unheard of by other top providers world-wide.
I do think there was an issue a few years ago, where they were not using enough progesterone when women couldn't tolerate it. They had quite a relaxed attitude towards progesterone. I think that had changed in recent years - but some of the women interviewed may have been affected before this change, on the old regime.
My other experience with them has been that they have a shedload of doctors and there is a lot of variability in terms of how good they are, how much they listen to patients, how much you feel seen as an individual and that kind of thing. That's to be expected and you can easily switch between doctors there if you want to. I have a couple of times.
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Yes, as someone here pointed out, Newson is basically practising the protocol established by Studd - for some women particularly with hormonal depression Studd advocated up to 800pmol E2.
And re a relaxed attitude towards progesterone, in Nick Panay's White Paper mentioned in this thread he still advocates 7-10 days of 100mg progesterone for prog intolerant women and I doubt he would do that recklessly (with the caveat of regular uterus monitoring), all of which simply confirms that one can work within quite wide prescribing margins according to individual needs and biology.
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Yup!
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I'm going to possibly disagree with you slightly Joziel - I don't think we should be encouraging each other on social media to do things like increase their dose of HRT without it being approved by / the awareness of their doctor (but perhaps this isn't what you meant). In general I've noticed an increasing amount on this forum in the 5 years that I've been a part of it of well intentioned people thinking that what worked for them will work for someone else and advising them based on that. We all want to help each other, so it 100% comes from a good place - but there is SO much variability between women and what their hormones are doing depending on their stage of meno and personal hormonal picture, and it has bothered sometimes seeing people here or on Facebook groups be told "facts" without linking to studies to back it up, or being advised to do things based on what has worked for them, when (in my eyes) it could actually be making the situation worse. And I'm not only referring to increasing doses of HRT, I've also seen people being advised to use transdermal P cream as their HRT P, so it's in all sorts of areas. I think explaining what has worked for you and suggesting things to talk about with their doctor is great, but we have to be so careful. I've no doubt been guilty of doing this myself in the past too, so not a dig at anyone in particular - just an observation :)
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(with the caveat of regular uterus monitoring), all of which simply confirms that one can work within quite wide prescribing margins according to individual needs and biology.
I looked at Nick Panays website last night many of his Associates in their profiles mention a link in some way to the BMS.
Maybe Kirsty Wark could have emphasised more about why Louise Newson has lost her accreditation rather than on the use of higher doses of oestrogen which came across more in the programme.
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Gilla - over the years Hurdity has posted many links on various aspects of HRT etc..
This thread is basically about the Panorama programme being 'one sided'. There is an article by Louise in one of the Sunday papers, yet to be read as I slept most of yesterday :'(
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I am saddened to see so much misinformation and judgement in these posts. I feel that it is important to clarify a few points that particularly concern me, and apologies for the length of this post!
Background
First of all, this forum was set up many years ago to provide a safe platform for sharing of experiences, to reduce isolation, to provide accurate information, along with other resources on the website so that menopause matters' users felt able to make informed decisions about their menopause.
Menopause Matters Ltd was founded in 2001, the website was launched in 2002, and Menopause Matters magazine in 2005. This was a time when the fallout from publication of the Women's Health Initiative trial and the Million Women study was having a huge impact on interest and investment in menopause, with many women and healthcare professionals having concerns about risks of HRT. Many were denied the benefits of treatment either due to choice or advice. Myself and many others spent much time providing information in many ways for both women and healthcare professionals to show risks in perspective, while reinforcing understanding of benefits of HRT, along with other treatment options. Gradually, interest returned, with a turning point in 2015, with publication of the first NICE guideline on diagnosis and management of the menopause. Kirsty Wark presented a key BBC Scotland programme, "The Menopause and Me" in 2017, which was the beginning of raising awareness of the menopause widely. Subsequent celebrity attention, more television programmes and intense increase in social media discussions, including the work of Newson Health, has been fantastic for continuing to raise the importance of menopause.
However, it is important that accurate information is provided, that people are not encouraged to try something because it worked for someone else, that guidelines, which go through rigorous processes with examination of all available scientific evidence before publication, are recognised and used.
So what about the British Menopause Society (BMS)?
The BMS was establishes in 1989 and has been pivotal in providing education for healthcare professionals with the aim that if advice is needed from a healthcare professional, consistent advice will be given. During the years of lack of interest in menopause, the BMS continued to develop guidelines, run conferences and education programmes. In recent years, with welcomed renewed interest and awareness, along with awareness of inconsistencies in advice being provided, the education provision has been accelerated at pace to try to reach demand. I am founder and MD of Menopause Matters as well as Trustee and past Chair of the BMS. Menopause Matters regularly quotes and refers to guidelines, publications, and news items from the BMS, but we work completely separately. Women's Health Concern is the patient arm of the British Menopause Society and provides excellent fact sheets on many aspects of the menopause, but there area also brilliant resources on the BMS website free for all, not just healthcare professionals. The BMS charity employs a very small dedicated team and all the trustees and members of the Medical Advisory Council provide clinical advice in their own time. All are committed to working hard to continue to improve menopause education and care in the UK and further afield and many have been involved in key research to further improve knowledge.
I hope that this has provided some clarity, not around the background of the Panorama programme, which is complex, but around Menopause Matters and the BMS. Regarding my input to the forum, while I cannot respond to questions raised on the forum, and it is not intended to be a source of medical advice, we do have moderators who alert me to key issues as required.
I can only ask that you use the forum for its intended purpose, for which it has helped thousands of women over the last 20+ years, and trust the recommended resources.
So where to go?
The British Menopause Society: The specialist authority for menopause and post reproductive health in the UK, affiliated to the Royal College of Obstetricians and Gynaecologists. (thebms.org.uk)
Women's Health Concern: The patient arm of The British Menopause Society. It offers confidential Advice, Reassurance and Education (womens-health-concern.org)
Women’s Health platform on NHS Inform: The Women's Health Platform sets out information on women's health at key stages of life, from puberty to later years, with a focus on menopause. Menopause and Post Menopause Health.
The International Menopause Society: The International Menopause Society (IMS) brings together the leading specialists to study and share knowledge about all aspects of aging in women, with a specific focus each year on World Menopause Day (imsociety.org)
Menopause Matters: Website, magazine and podcasts providing up-to-date, accurate information about the menopause, menopausal symptoms and treatment options. Here women will find information on what happens leading up to, during and after the menopause, what the consequences can be, what they can do to help and what treatments are available. (menopausematters.co.uk)
Other resources: Women can find many recommended resources outside of Menopause Matters here.
Healthcare professionals: If you do need advice and support from a healthcare professional, be reassured that the British Menopause Society is the go-to place with excellent free resources online for healthcare professionals and public, as well as masterclasses, conferences, and the recently launched online BMS Management of the Menopause Certificate for healthcare professionals. More education is always needed but amazing progress is being made.
Best wishes to you all and thank-you for using Menopause Matters.
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Yes I know she has CLKD, and always very helpful. Was just an observation on the aspect being discussed on this thread regarding the Daily Mail article quoting people on this forum and the caution I feel is needed about encouraging other people to do things because it worked for them, especially if it's something like increasing HRT.
Excellent post from Dr Currie :)
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Joziel, thank you for posting this:-
She has posted on all her social media about it and today all patients at Newson Health got an email about it.
Hello,
As a patient of Newson Health, we wanted to write to you personally following recent media coverage of our clinic. . .
As a (distant) past patient of NH from when the first clinic had just opened, monthly newsletters & other informative NH mailshots still land frequently in my inbox & I welcome being included in this courtesy, but didn't receive the statement you posted. I'd been waiting for some sort of official NH response to the Panorama broadcast & was surprised not to hear anything. Do you know whether this was only sent to current patients please?
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tnx Heather - mayB post in a new thread [locked] for clarification?
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Thank-you--good idea re new post. Hopefully I have done so!
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Agree CKLD as this info would likely be helpful for all members to be aware of...
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It worked Heather ! Tnx.
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Joziel, thank you for posting this:-
She has posted on all her social media about it and today all patients at Newson Health got an email about it.
Hello,
As a patient of Newson Health, we wanted to write to you personally following recent media coverage of our clinic. . .
As a (distant) past patient of NH from when the first clinic had just opened, monthly newsletters & other informative NH mailshots still land frequently in my inbox & I welcome being included in this courtesy, but didn't receive the statement you posted. I'd been waiting for some sort of official NH response to the Panorama broadcast & was surprised not to hear anything. Do you know whether this was only sent to current patients please?
Catching up on email lunchtime I received an October Newsletter from Newson Health. I have never used them or received emails before but did make an enquiry some time ago on behalf of my daughter.
Clicking on the ‘Our Clinics’ bit there is what seems to be a new statement banner at the top.
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:thankyou: Minusminnie
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I am saddened to see so much misinformation and judgement in these posts.
Just to clarify, what do you deem to be so much misinformation in these posts?
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Thank you Minusminnie :).
Clicking on the ‘Our Clinics’ bit there is what seems to be a new statement banner at the top.
I have received the Oct newsletter & have just followed the link you mention but as far as I can see it doesn't contain the statement Joziel posted. Am I looking in the wrong place?
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Hello again ladies
Wrensong - I have just checked my emails and the one I received is the same one that Joziel posted. It is signed by Louise Tyson, Managing Director of Newson Health.
I hope this helps you track it down!
Take care.
K.
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And that's the bhrt clinics now jumping on the bandwagon and using the panorama presentation to their advantage.
No wonder us desperate woman dont know where to turn.
Email from Marion Gluck clinic today:
As the UK’s leading bioidentical hormone clinic, we are often asked, "How safe is bioidentical hormone therapy?" This is a common concern for women who want to relieve their menopause symptoms through hormone treatment while ensuring they are making the right choice for their health.
So, we thought we would explain how we ensure our treatment is both safe and effective for all women.
With hormone therapy, there is a tendency for persistent symptoms to be treated with an ever-increasing amount of estrogen, which can lead to adverse health risks and is where concerns over the safety of treatment arise.
But this is where our clinic is different.
Our bioidentical hormone treatment is custom made for each patient. Unlike conventional HRT, we are not restricted to using just estrogen and progesterone to treat symptoms, but a full range of bioidentical hormones.
This gives us the ability to create personalised treatments for our patients that achieve effective symptom relief at lower doses. This reduces side effects and the health risks that can come from using high levels of estrogen.
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Oh thank you Kathleen :)
the one I received is the same one that Joziel posted. It is signed by Louise Tyson, Managing Director of Newson Health.
. . . but I haven't received that. Not even in spam :-\ Seems odd ???
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And that's the bhrt clinics now jumping on the bandwagon and using the panorama presentation to their advantage.
No wonder us desperate woman dont know where to turn.
Email from Marion Gluck clinic today:
As the UK’s leading bioidentical hormone clinic, we are often asked, "How safe is bioidentical hormone therapy?" This is a common concern for women who want to relieve their menopause symptoms through hormone treatment while ensuring they are making the right choice for their health.
So, we thought we would explain how we ensure our treatment is both safe and effective for all women.
With hormone therapy, there is a tendency for persistent symptoms to be treated with an ever-increasing amount of estrogen, which can lead to adverse health risks and is where concerns over the safety of treatment arise.
But this is where our clinic is different.
Our bioidentical hormone treatment is custom made for each patient. Unlike conventional HRT, we are not restricted to using just estrogen and progesterone to treat symptoms, but a full range of bioidentical hormones.
This gives us the ability to create personalised treatments for our patients that achieve effective symptom relief at lower doses. This reduces side effects and the health risks that can come from using high levels of estrogen.
I have always wondered why anyone would go to a private clinic that does not have the option of compounded HRT, as they both will liaise with GPs for any HRT that can be prescribed on the NHS, but there are so many more options available.
I suspect it is because the BMS choose not to support the prescribing of compounded products, as this relies fully on the doctors’ prescribing safely rather than also having the mitigation of packaged high dose progesterone that cannot cause oestrogen to build up.
Of course, in reality the BHRT docs are doing it safely and carrying out womb scans if oestrogen is used (even in smaller amounts at my clinic) so it really is about a mis-trust in doctors which makes you wonder why they bother training for all those years!
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Thank you Minusminnie :).Clicking on the ‘Our Clinics’ bit there is what seems to be a new statement banner at the top.
I have received the Oct newsletter & have just followed the link you mention but as far as I can see it doesn't contain the statement Joziel posted. Am I looking in the wrong place?
Didn’t have time to read lunchtime it is an orange banner across top of clinic website but maybe it has been there for sometime it is quite some while since I looked up Newson Health.
See Kathleen has posted and sorted 🙃 to 🙂 since.
I was quite surprised to get an email today with newsletter in they must be trawling a database !
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Yes Minusminnie, thanks, it's the orange banner link I followed but it doesn't include that statement & I haven't received the email Kathleen mentioned either. So I wonder if it only went to current/recent patients.
Doesn't matter - if what Joziel posted is it in its entirety, I've seen it now. I'd just thought it odd not to have received anything official direct from NH given I seem to be still on their mailing list, then was surprised to see from this thread that there had in fact been something sent to patients via email.
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I agree - it would be helpful to know what misinformation you are referring to...
quote author=margherita link=topic=70884.msg960094#msg960094 date=1728307093]
I am saddened to see so much misinformation and judgement in these posts.
Just to clarify, what do you deem to be so much misinformation in these posts?
[/quote]
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Yes, I can't see any misinformation here. But then one person's misinformation is another person's thinking outside the box...
"I'm going to possibly disagree with you slightly Joziel - I don't think we should be encouraging each other on social media to do things like increase their dose of HRT without it being approved by / the awareness of their doctor ("
Gilla, I'm not recommending that - it would be impossible to increase HRT without a doctor's approval. Where are you going to get it from? You need a doctor to prescribe a higher dose. Fortunately many doctors are very patient-led and will do so if it's specifically requested with good reasoning.
Whether that remains the case after all this Panorama fall-out remains to be seen.
I have zero time for the BMS (in case that hasn't come across already), for so many reasons including my personal experience of BMS reg doctors preceding all this.
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I have been to the Marion Gluck clinic and that statement is correct. I was allowed to start on a much lower dose and include testosterone from the start. The reason the BHRT clinics are criticised is that they say there 'is no evidence' that the drugs are safe. That is because you cant conduct a double blind placebo controlled clinical trial on the millions of individual women taking HRT. There is nothing more woo woo than that. Just as they don't conduct individual trials on any other drug. Hence adverse reactions for some on antibiotics for example.
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I have been to the Marion Gluck clinic and that statement is correct. I was allowed to start on a much lower dose and include testosterone from the start. The reason the BHRT clinics are criticised is that they say there 'is no evidence' that the drugs are safe. That is because you cant conduct a double blind placebo controlled clinical trial on the millions of individual women taking HRT. There is nothing more woo woo than that. Just as they don't conduct individual trials on any other drug. Hence adverse reactions for some on antibiotics for example.
This is the same logic that is chucked at so many HRT arguments isn't it? "There is no evidence to support...." no, because nobody bothers to find research as there don't seem to be shiny patented drugs to find big pharmas research.
We're supposed to just suck it up and retreat from the Boardroom to the kitchen at midlife and go quietly.
I can't help but think (and bloody hope), that this might have been a massive own goal for "the establishment" who want to control the (out of date) narrative.
Tens of thousands of pissed off hormonally challenged womans have I hope had enough of this farce, if not for us, then for those that follow us...
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I have been to the Marion Gluck clinic and that statement is correct. I was allowed to start on a much lower dose and include testosterone from the start. The reason the BHRT clinics are criticised is that they say there 'is no evidence' that the drugs are safe. That is because you cant conduct a double blind placebo controlled clinical trial on the millions of individual women taking HRT. There is nothing more woo woo than that. Just as they don't conduct individual trials on any other drug. Hence adverse reactions for some on antibiotics for example.
It's complete BS isn't it.
Take a look at the Alternative Therapies section on here and read through my thread on compounded hormones and you will see what a hard time I had.
Compounded hormones work and they are safe under supervision but the BMS, NHS and opponents etc were not having any of it. We are talking about desperate women here who are in the last chance saloon before facing a hysterectomy but no, not even that would move them.
The sheer dogma is incredible, it's like coming up against an immoveable object. I had similar problems with the low dose Professor Studd regime which was considered to be definitely deadly despite very extensive supervision which was better than NHS supervision.
Louise Newson has my deepest sympathy.
Edit: i made it quite clear that compounded progesterone is a last resort for women who have tried all the branded progesterone products available and are one step away from a hysterectomy.
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Does anyone know why I'm getting personal emails regarding this post and links to follow it or unsubscribe to it??
I've never had notifications of posts or threads before. I've not posted on this thread and unticked the box on my profile to not have emails, the box was actually ticked but I'd never done this.
The email stated I was sent the email as I was watching the post. Anyone else had this? Is this unusual?
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Sorry all, think I've sorted it. Nothing sinister, bit wary of emails with links.
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Does anyone know why I'm getting personal emails regarding this post and links to follow it or unsubscribe to it??
I've never had notifications of posts or threads before. I've not posted on this thread and unticked the box on my profile to not have emails, the box was actually ticked but I'd never done this.
The email stated I was sent the email as I was watching the post. Anyone else had this? Is this unusual?
Same thing happened to me. I thought I must have been fat-fingered and requested notification by mistake, but it would appear not. Most odd.
JP x
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Think I may of pressed the notify button, not had anymore.
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Hello again ladies.
I haven't pursued the compounded hormones route though in all honesty I wouldn't rule it out.
The only experience I have is with the NHS and Newson Health though I did see a Consultant at a private hospital back in the day.
The NHS Consultant told me that Utrogestan was proven to protect the womb if used with the agreed amount of Oestrogen and he was happy with my current HRT regime. He went on to suggest that I could try Lutigest as an alternative progesterone which I assume has the same safety profile, unfortunately my GP surgery refuse to prescribe it.
The Consultant at the private hospital was concerned about using a reduced amount of progesterone and told me that ' we can't keep scanning women you know '.
I just thought I would mention these experiences ladies as they may be of interest to some of you.
Take care everyone.
K.
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When I used the Marion Gluck clinic they asked you to organise your own scan before any treatment.
I used a private clinic who also do baby scans. All very quick and easy. But obviously I did have to pay for this. Was about £100 I think.
That's really interesting and relevant.
Can you just book your own transvaginal scan somewhere and not have to see a specialist or GP??
TD
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Yes. That's exactly what I did. They have clinics in s the main cities. Mostly doing baby scans I think.
Ultrasound direct. :)
OMG THANK YOU SO MUCH :thankyou:
I've been searching for this but I guess I've been putting the wrong words into the search box. Since the LN programme which was pants IMO I wanted to get a Transvaginal scan, I've only had one before about 5 years ago on NHS.
My search kept showing private meno clinics where you had to pay £200 for a consultation before a scan which cost more on top. All I need is a scan to satisfy myself and my husband(who was scared by the documentary)I don't think I need to consult with a private doc for that.
I've never had children so I haven't had any experience with private baby scans so I was clueless here too.
This is great I just checked and have an Ultrasound Direct in my town.
Fab Thank you CC
TD
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You're welcome. I just hope my memory serves me right with all this. It was a few years ago.
I do recall I got the images. ;D and I think that told me about thickness. I'm pretty sure the radiographer told me this I go whilst doing it.
Absolutely, do it for piece of mind. Good luck xxx
Just checked. Mine was a pelvic scan - well woman. That was ovaries and transvaginal I think. But I'd check with them. I paid £135 a few years ago.
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You're welcome. I just hope my memory serves me right with all this. It was a few years ago.
I do recall I got the images. ;D and I think that told me about thickness. I'm pretty sure the radiographer told me this I go whilst doing it.
Absolutely, do it for piece of mind. Good luck xxx
Thank you :foryou:
No, I think you are spot on, it all seems to check out from what I'm seeing on their website.
I'll have to refresh my own memory of max thickness on endo, Off top of my head I think it may be under 4mm is ok, but I need to check and ask here if anyone remembers?
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Hello again ladies.
I had a scan in April this year with Ultrasound Direct. I think it was about £150 and I was very impressed with the service.
I hope this helps.
Take care ladies.
K.
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Thank you K that is helpful.
Sorry this is going kinda off topic for this LN thread but the documentary has thrown up a debate on whether the amount of O is balanced with P when having above licence dose of O.
I'm looking through this website archives and it seems if I want to check endo thickness I need a TD or Transdermal scan so like a baby scan and not a TV Transvaginal scan, is that right?
TD
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Hello Turkish Delight.
The scan I had was an ultrasound of the womb which is usually done for pregnancy and involves putting gel on the abdomen and using an ultrasound wand to go over the surface of the skin. For this they like you to have a full bladder so that it pushes the womb nearer to the surface as this results in a clearer image. You then empty your bladder before beginning the second part of the procedure.
This involves inserting a different shaped wand into the vagina to scan the womb from the inside. Both procedures are painless by the way.
If I were you I'd ring the clinic nearest to you or their head office which is in Birmingham I believe, and they can tell you more about what's on offer and deal with any concerns that you have.
I hope you get sorted soon and wishing you well..
K.
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When I first got my endo pains at age 35yo, I had an ultrasound on the NHS but they only did the external kind and I read online this wasn't as accurate as internal...
So I paid privately and went to some gynaecologist on Harley St for an internal scan. I think he usually did fertility scans etc, because he was telling me I had loads of eggs and everything looked great from a fertility perspective - and I didn't want kids and couldn't care less ;D and just wanted to know everything looked okay and whether he could see any signs of adhesions.
He couldn't. It was only when I had my laparoscopy that they found the endo. But anyway - yes - you can get them privately ;D
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When I first got my endo pains at age 35yo, I had an ultrasound on the NHS but they only did the external kind and I read online this wasn't as accurate as internal...
So I paid privately and went to some gynaecologist on Harley St for an internal scan. I think he usually did fertility scans etc, because he was telling me I had loads of eggs and everything looked great from a fertility perspective - and I didn't want kids and couldn't care less ;D and just wanted to know everything looked okay and whether he could see any signs of adhesions.
He couldn't. It was only when I had my laparoscopy that they found the endo. But anyway - yes - you can get them privately ;D
Thank you so much for helping me.
So both TV and TD Is what I need to get.That is what GP gave me 5 years ago on NHS so makes sense.
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Definitely worth doing. Until July, I was taking 100mg Utro vaginally for 14 days with 4 pumps of Oestrogel daily. I had no unscheduled bleeding or any signs that anything was amiss. Decided to have a scan anyway, privately. I was shocked when it revealed a thickness of 11.7 mm plus several polyps.
I have since had two hysteroscopies for biopsy and removal of the polyps and now have a Mirena fitted, as I couldn't tolerate more Utro.
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Thanks for the info CrispyChick, there's a clinic near to me too. Looks to be £145 which includes a report for the GP.
I've been struggling to take a full dose of progesterone and I'm a bit worried (especially post Panorama 🙄), plus I had a fibroid identified a couple of years ago and is be invested in whether that has alerted post HRT.
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The Panorama programme was very one-dimensional.
It's goal seemed to be to shame LN, and put fear in women and the private and NHS practices again,
just like the original Women’s Health Initiative study in 2002.
TD
After having watched it, I couldn't agree more with this.
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Hello again ladies.
I think the Panorama programme was also highlighting the need for follow up care and criticising the private clinics for not offering this service, especially when they prescribe high doses of oestrogen off licence.
I believe that the NHS does not endorse the use of Utrogestan vaginally and this is another area where the treatment by the private sector is different.
The post on this thread from Chopsuey shows that a scan is beneficial even when there are no obvious problems to report.
Take care ladies.
K.
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I am actually quite shocked to hear that parts of the private sector, that gives our higher E doses, does not require regular scans. After all, it's at your cost.
Despite the bad press the bhrt clinics get from many members on this forum, they categorically will not pursue treatment for you without scans and mammogram. All at your own cost, obvs.
And, I should add, they don't offer these themselves, so they make no profit from it.
But, this puts their safety profile in a good light.
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There is no reason for women to be required to have scans just because they are taking a higher dose of E, if they are doing that because they don't absorb it well.
My serum estradiol level on TWELVE pumps of gel a day was 330pmol, which is the same as many women on 2-3 pumps of gel.
It makes zero sense to require scans on the basis of dosages. If they want to require women with serum estradiol over Xpmol to have scans, that would make more sense....
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Hello again ladies.
I don't want to especially criticise the Newson Health clinic, it is just the only one I have used.
It is true that they didn't provide or even suggest a scan when I was with them. They did however want me to have a blood test to make sure that my oestrogen levels were sufficient before starting testosterone. I had to arrange this with another private company that Newson Health had nominated ( I assume they have a contract with them ). I went along to the appointment which was in another town, and when I asked the Phlebotomist if I could be sent the results she said that wasn't possible as the information was for Newson Health only. It was then up to my doctor at NH to email the results to me, obviously I would be charged for this service.
I was a bit miffed that my results, from a test that I had arranged and paid for, were not available to me personally and I would have to pay again to receive them.
Moan over!
Take care ladies.
K.
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That doesn't sound right Kathleen. Things have changed now. Newson offer their own blood testing services, although you don't have to use their services.
I get my bloods done wherever I like (Medichecks, NHS, Thriva, Lola) and as long as they are venous samples and not finger prick, my Newson doctors have been happy with them. I get the results and forwards them onto Newson Clinic which adds them to my file.
You should not have had to pay for your results because you have a legal right to the data which anyone holds on you and your blood test results would constitute that data. I think maybe there was a misunderstanding there...
I would add that I was started on T at the Newson Clinic without having to do a blood test beforehand to even check I was low. This was several years ago now and things might have changed. I do need annual tests to monitor levels.
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Hello again ladies.
I don't want to especially criticise the Newson Health clinic, it is just the only one I have used.
It is true that they didn't provide or even suggest a scan when I was with them. They did however want me to have a blood test to make sure that my oestrogen levels were sufficient before starting testosterone. I had to arrange this with another private company that Newson Health had nominated ( I assume they have a contract with them ). I went along to the appointment which was in another town, and when I asked the Phlebotomist if I could be sent the results she said that wasn't possible as the information was for Newson Health only. It was then up to my doctor at NH to email the results to me, obviously I would be charged for this service.
I was a bit miffed that my results, from a test that I had arranged and paid for, were not available to me personally and I would have to pay again to receive them.
Moan over!
Take care ladies.
K.
I was also told by two private specialists that I didn't need a scan, as I had no symptoms that would suggest there was an issue. However, I was aware from info on this forum, that the guidelines for levels of P in relation to E had changed. For my own peace of mind, I chose to have a scan - just as well I did!
I also have had the issue of not being able to access blood test results from a nominated provider, requested from a specialist. They would not give them to me and I gave up trying to get them from the specialist, whose admin systems were in chaos. I decided to wait until my next appointment but when they cancelled that, I gave up. I see someone else now who accepts Medichecks or any other reputable blood test provider.
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Just make a Subject Access Request (DSAR) to the blood test companies and they will be under legal obligation to provide you with your results within 30 days.
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I am actually quite shocked to hear that parts of the private sector, that gives our higher E doses, does not require regular scans. After all, it's at your cost.
Despite the bad press the bhrt clinics get from many members on this forum, they categorically will not pursue treatment for you without scans and mammogram. All at your own cost, obvs.
And, I should add, they don't offer these themselves, so they make no profit from it.
But, this puts their safety profile in a good light.
Exactly! They are made out to be the Wild West, prescribing eye of newt. Unlike in this instance, reporters have repeatedly gone after them but have never found anything underhand or unsafe.
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If you have paid for a test and no result has been provided, you are entitled to a refund.
I'd get a chargeback from my bank for the payment. You can do this up to 120 days afterwards.
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Here we go, folks: What was really behind the politics of the Panorama show, as explained by Liz Earle here: https://youtu.be/p3nYlWlUIAs?si=Chj4KSrQOa6WlWwU
I’ll be complaining to Ofcom.
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The deadline for complaining to Ofcom is this Friday 25 October
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It seems that you first need to complain to the BBC and then to Ofcom.
All the links needed to complain to both are just below the Liz Earle YouTube video.
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I read, I think, on a FB group that one woman's doctor would not give her the required HRT on the strength of a BBC TV programme, which is weird, as you wouldn't expect a Dr to change a prescription based on a mainstream TV programme.
I am also reading that some women have low oestrogen despite being on multiple times the maximum NHS oestrogen dosage, as, for some reason, their skin does not absorb the oestrogen, so their bloods come out as low oestrogen. I don't know why some women don't absorb transdermal oestrogen. Does this mean that this NHS oestrogen dosage is simply not enough for some women?
I also get a feeling that HRT is somehow "taboo" I was discussing menopause with an older friend, who said it's all in the mind. I did tell her, mine gives me loose stools but some people are just convinced menopause is not serious, I used to be like this, pre-meno myself, thinking it was just flushes and stoppage of periods and wondering why there were so many meno products in boots.
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As someone currently on 3x the max licensed dose (3.5 to be precise) and who gets her HRT from her NHS GP on the basis of a letter from Newson Health, I am very concerned that my GP might revise or refuse my estrogen now. I haven't put a request in since the episode aired but will need to soon.
And yes, my serum estradiol has never been higher than 330pmol because I don't absorb it well transdermally. When other women can achieve this level from 3-4 pumps of gel, I fail to see why I should be declined adequate care just because my skin doesn't let estradiol through(!). Yes, it means the max licensed dose is not sufficient for many women. The Newson Clinic estimate (after research from the women registered with them) that 25% of women are affected in this way.
The only reason we are restricted E based on dosage is because the NHS is completely inadequate and under-resourced and could not monitor serum estradiol levels. All they can do is go by the amount applied/dosage. If they had to somehow take bloods from every woman on HRT, the system would fall apart. So they make up this BS rule about the actual dosage instead.
Some women don't have serious symptoms of menopause but that doesn't mean that long-term they are not gradually affected by all the negative effects of low hormones. Sometimes I am glad I have had terrible symptoms because it has drawn my attention to ensure I have adequate hormones and hopefully am protected against a lot of the diseases of aging which I might otherwise have just overlooked or ignored if I didn't have immediate symptoms.
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I watched this last night but wonder if she will have made things worse by stirring up more media attention.
We need to look at intent. I believe that LN has had good intent and that it’s not all been about money, however, she does appear to push oestrogen as the holy grail because of her own personal success with it. She appears to ignore any other opinions that it does not help all women, with the assumption that they are just not having enough of it. To make such public statements of safety, this is what needs to be proven using double blind placebo research, not just untested accounts of her patients.
The BMS’ intent seems to have been fuelled by some angry NHS doctors (who do not have the same access to monitoring that private clinics do) who do not agree with blindly increasing oestrogen doses and facing patients every day demanding it.
Nick Panay seems to have been dragged into it, unwillingly, due to him also prescribing high dose oestrogen off licence. However, the big difference here, is that he is not publicly recommending this practice to peers or shouting it to the media. (Although I stand corrected if he does promote it).
Having Liz Earle (a non-medic) challenge Panorama is fair enough, as both are media entities, but surely medical ethics needs to be challenged by actual medics? if I did not know anything about oestrogen and listened to this video, I would be convinced that oestrogen was 100% safe in any dose, as she said that there was no evidence of it ever causing womb cancer. Of course it’s impossible to measure this. She did not mention breast cancer at all, which is slightly easier to measure for oestrogen positive breast cancer but, even that, how you can ever know for sure. So we have to accept that there is no way of testing for this, rather than accept safety based on there being no evidence.
She also compared the high levels of oestrogen in the pill for younger women with HRT estradiol for older women. Of course, synthetic oestrogen cannot be compared, particularly when we have extremely high levels of natural progesterone when younger. Not sure if any of you have seen the updated menstrual cycle chart but the old one had the non-comparable measurement of progesterone missing from the Y axis, which had made it appear that oestrogen was higher than progesterone in the follicular phase, which never was the case.
I think it’s a shame that this has turned into a 2 sided public row (which the media love!) which, as already stated, is affecting those currently on higher oestrogen with GPs now suspicious. Perhaps it will be the case that going forwards all women on higher dose oestrogen will require womb scans and more frequent mammograms, which would not be such a bad outcome if it does protect them better. Why this was not done as standard by Newson Health, (and Nick Panay if this is the case) still puzzles me as all of this could have been avoided.
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"Why this was not done as standard by Newson Health, "
.. because - why should it be done, if your serum estradiol is never high?
The amount you are applying externally to your skin (dosage) has often zero correlation to the amount you absorb (penetrance). Routine testing of women going by what they apply externally makes no sense.
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Yes I get it, if they are doing blood tests and it’s about absorption.
Perhaps they should just do the scans etc when blood levels are higher than whatever the requirement is for the ratio of oestrogen to progesterone, as I am sure there were some accounts of the dose being raised based on symptoms alone.
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Dangermouse, well said.
Liz Earle said 'Over 33,000 healthcare professionals have taken Louise Newson's course', and Liz thinks this is going to help women get their treatments on the NHS.
If that depends on the 'irrefutably safe information' that Louise Newson has been spreading, the NHS will have a hard time ahead.
'Irrefutably safe information' is unscientific rhetoric. Liz Earle's 3 own books on the table probably represent the extent of her 'researcher' status.
Joziel, 'if your serum estradiol is never high'? How does anyone know this?
Why continue to insist on something that doesn't work in the licensed dosage range? There are different HRT products to trial before prescribing off-licence doses.
Does Louise Newson try different HRT products? Are gels and patches absolutely necessary for 'poor absorbers', even if that means subjecting their skin to alcoholic gel or patches' glue daily, only to achieve low to medium levels of oestrogen? (according to your opinion, Joziel)
I think she is contributing to transdermal oestrogen waste, for the benefit of the manufacturers, the disgrace for the environment, and the potential risk for the patients, but I'm open to further discussion.
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How do you know your serum estradiol is never high at any dose? There are women on 100mcg patches or 4 pumps of gel with 'high' estradiol doses.
For me, in the last 2 years my estradiol has been tested probably close to 10-12 times - and it has never been high, by anyone's definition. (Highest was 450pmol on the lowest dose of HRT I've ever been on, 37.5mcg patch. It was lower than that on 12 pumps of gel.)
Personally, I've tried Sandrena and Oestrogel before moving to a combination of Oestrogel and Estradot. So thanks for the advice to try 'different HRT products' before prescribing off licence. Done that. Sometimes it works but most of the time if women have issues absorbing transdermally (due to dry skin, thicker skin, too much/little fat etc etc), it's going to affect all transdermal methods.
No idea what you mean about 'subjecting skin to alcoholic gel or patches' glue daily. The frequency of application is exactly the same. I change my patches twice a week like anyone else. I don't change them daily.
Also no idea what magic solutions you would propose, seeing that injections are not available in the UK, pellets provide unreliable doses which can't be adjusted once inserted, and oral HRT carries the risk of blood clots and has to bypass the liver. I'd far rather take a higher transdermal dose.
The correct response really would be for manufacturers to recognise that women need higher doses and to manufacture more concentrated products which can provide these dosages in the same small patch size or just a few pumps of gel. Of course that isn't going to happen if everyone is sh*t scared of estrogen.
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Thanks for replying.
How do you know your serum estradiol is never high at any dose? There are women on 100mcg patches or 4 pumps of gel with 'high' estradiol doses.
'Never' is not the most accurate term to refer to something that may (or may not) only apply to you, hence my question.
For me, in the last 2 years my estradiol has been tested probably close to 10-12 times - and it has never been high, by anyone's definition. (Highest was 450pmol on the lowest dose of HRT I've ever been on, 37.5mcg patch. It was lower than that on 12 pumps of gel.)
This is your experience, which is valid, but can't be used as an argument to defend Louise Newson's approach to the patients that have been treated with higher oestrogen doses, despite feeling that their symptoms were getting worse.
I think 450 pmol on the lowest dose of HRT is a considerable level of oestrogen, don't you? And why 12 pumps of gel, if that doesn't even equal what you had with the patches? Just trying to understand, but I'm aware yours can be a unique case, as it often happens.
Personally, I've tried Sandrena and Oestrogel before moving to a combination of Oestrogel and Estradot. So thanks for the advice to try 'different HRT products' before prescribing off licence. Done that. Sometimes it works but most of the time if women have issues absorbing transdermally (due to dry skin, thicker skin, too much/little fat etc etc), it's going to affect all transdermal methods.
I was referring to the doctor (Louise Newson), not you 'personally', but I understand that you are feeling 'empowered' enough to take control of your own treatment, which can be a good thing, if you are aware of the potential risks.
No idea what you mean about 'subjecting skin to alcoholic gel or patches' glue daily. The frequency of application is exactly the same. I change my patches twice a week like anyone else. I don't change them daily.
I'm referring to the amount of gel and glue. Applying 12 pumps of gel daily is not the same as applying 4 pumps of gel daily. Applying 3 patches twice a week is not the same as applying 1 patch twice a week, considering the fact that you have to change application sites constantly.
Also no idea what magic solutions you would propose, seeing that injections are not available in the UK, pellets provide unreliable doses which can't be adjusted once inserted, and oral HRT carries the risk of blood clots and has to bypass the liver. I'd far rather take a higher transdermal dose.
There are no magic solutions, including upping oestrogen doses for 'poor absorbers', that's exactly the point.
'I'd rather take a higher transdermal dose'... despite...?
The way you and Louise Newson put it, sounds as if high transdermal oestrogen doses have no risk at all, and this argument is often followed by the 'there are not enough studies' mantra to justify this approach, which is a fallacy. If there aren't enough studies regarding high doses, how can all patients be informed about the potential risks?
The correct response really would be for manufacturers to recognise that women need higher doses and to manufacture more concentrated products which can provide these dosages in the same small patch size or just a few pumps of gel. Of course that isn't going to happen if everyone is sh*t scared of estrogen.
That's not how it works. Manufacturers have to provide scientific evidence before having their products approved. It's a lenghty and expensive process.
By the way, do you know that it's much more expensive to put very small amounts (micrograms) of estradiol in a patch or gel than milligrams in a pill? And that's not just because manufacturing patches and gels is more expensive, it's also due to the fact that small amounts of estradiol molecules are more unstable than large amounts, which affects their bioavailability. Someone posted this on MM a while ago, I can try to find the link if you're interested.
Maybe that's one aspect (often disregarded by doctors who don't know how patches and gels work) that can affect absoption for some patients, after all not all patches and gels are exactly the same, many Oestrogel users have been experiencing inconsistencies for some time now, and I don't see Dr Louise Newson talking about it, apart from one lot of 'faulty pumps'.
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I can't speak about the 5 other women mentioned in the Panorama interview. But I'm clearly one of the 45,000 of us not interviewed, who is extremely happy to have found a clinic prepared to actually treat me with hormones instead of anti-depressants.
"I think 450 pmol on the lowest dose of HRT is a considerable level of oestrogen, don't you? And why 12 pumps of gel, if that doesn't even equal what you had with the patches? Just trying to understand, but I'm aware yours can be a unique case, as it often happens."
It's not about serum estradiol levels. It's about symptoms. You do realise that in peri, much of that extra 450 was created by my own ovaries? And two days later could well be something like 50pmol? Of course, you don't know (because I didn't mention it) that on 65mcg patch my level was 170pmol. And that on 50mcg patch it was 150pmol. So clearly that 450pmol on 37.5mcg patch was largely made by my own ovaries... And doesn't represent what I was cutting out to.
My results have included 250pmol on 4 pumps of gel. 330pmol on 6 pumps of gel. Still 330pmol on 12 pumps of gel.
Why go up to 12 pumps of gel? Because my levels increased between 4 and 6 and we wanted to trial getting them higher to see if that helped with symptoms.
Frankly, I was near to killing myself because I was only getting 3 hours of sleep a night. I was shaking through the night in my sleep to the point that the bed felt like it was moving under me, with inner tremors. My heart was beating over 100bpm in my sleep (tested with Apple watch and ECG machine attached to iPhone) when my resting pulse in my sleep is usually in the 40s. Every time I felt like I might fall asleep, I was jerked awake with a hypnic jerk....
Since increasing my estrogen to (we estimate) the range of 450-650pmol, I am finally able to sleep about 6 hours a night now - and most of these symptoms have reduced to the point that they are barely noticeable.
So you can say whatever you like about 12 pumps of gel and high estrogen dosages, I would a thousand times over choose the treatment I'm currently receiving over a 'computer says no' response to above licensed doses.
Your care and concern about the application of alcohol and gel to women's skin is extremely moving, but please don't trouble yourself about it. I'd rather take 5 extra minutes applying HRT than lose 5 hours of sleep lying awake, not to mention being unable to work and having my relationships fall apart because I can't function.
As for 'risk', the greater risk, for me, was death due to suicide. Marriage breakdown due to lack of sleep. Loss of income and then house as a result, because I can't work. Those 'risks' off-set the very low risk of taking above licensed doses when !) my serum estradiol has never tested high (sorry, there's that 'never' thing again, but really it means 'something that hasn't happened yet', just to spell that out), 2) when I am on plentiful amounts of progesterone continuously and 3) when I am not having random breakthrough bleeding, sore boobs or any other high estrogen symptoms. I would much rather take body identical hormones than anti-depressants and sleep meds - all of which have proven side effects which in my mind are far greater than natural hormones.
Of course manufacturers have to have products tested and trialled before being manufactured. That doesn't mean they shouldn't be testing and trialling them and bringing them to market.
And of course there is a lack of research, but because this is women's health and there is no money in it, it is unlikely that much research will be done any time soon - and personally I would rather not sit around with the life I had before, waiting for something which may never happen. I value the CHOICE to take the dosage I need - as clearly do many others.
I can't be bothered to argue back with you any more so won't be posting again.
I find it offensive that you want to question my treatment and decisions - without knowing anything about my history or experiences.
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I can't speak about the 5 other women mentioned in the Panorama interview. But I'm clearly one of the 45,000 of us not interviewed, who is extremely happy to have found a clinic prepared to actually treat me with hormones instead of anti-depressants.
"I think 450 pmol on the lowest dose of HRT is a considerable level of oestrogen, don't you? And why 12 pumps of gel, if that doesn't even equal what you had with the patches? Just trying to understand, but I'm aware yours can be a unique case, as it often happens."
It's not about serum estradiol levels. It's about symptoms. You do realise that in peri, much of that extra 450 was created by my own ovaries? And two days later could well be something like 50pmol? Of course, you don't know (because I didn't mention it) that on 65mcg patch my level was 170pmol. And that on 50mcg patch it was 150pmol. So clearly that 450pmol on 37.5mcg patch was largely made by my own ovaries... And doesn't represent what I was cutting out to.
My results have included 250pmol on 4 pumps of gel. 330pmol on 6 pumps of gel. Still 330pmol on 12 pumps of gel.
Why go up to 12 pumps of gel? Because my levels increased between 4 and 6 and we wanted to trial getting them higher to see if that helped with symptoms.
Frankly, I was near to killing myself because I was only getting 3 hours of sleep a night. I was shaking through the night in my sleep to the point that the bed felt like it was moving under me, with inner tremors. My heart was beating over 100bpm in my sleep (tested with Apple watch and ECG machine attached to iPhone) when my resting pulse in my sleep is usually in the 40s. Every time I felt like I might fall asleep, I was jerked awake with a hypnic jerk....
Since increasing my estrogen to (we estimate) the range of 450-650pmol, I am finally able to sleep about 6 hours a night now - and most of these symptoms have reduced to the point that they are barely noticeable.
So you can say whatever you like about 12 pumps of gel and high estrogen dosages, I would a thousand times over choose the treatment I'm currently receiving over a 'computer says no' response to above licensed doses.
Your care and concern about the application of alcohol and gel to women's skin is extremely moving, but please don't trouble yourself about it. I'd rather take 5 extra minutes applying HRT than lose 5 hours of sleep lying awake, not to mention being unable to work and having my relationships fall apart because I can't function.
As for 'risk', the greater risk, for me, was death due to suicide. Marriage breakdown due to lack of sleep. Loss of income and then house as a result, because I can't work. Those 'risks' off-set the very low risk of taking above licensed doses when !) my serum estradiol has never tested high (sorry, there's that 'never' thing again, but really it means 'something that hasn't happened yet', just to spell that out), 2) when I am on plentiful amounts of progesterone continuously and 3) when I am not having random breakthrough bleeding, sore boobs or any other high estrogen symptoms. I would much rather take body identical hormones than anti-depressants and sleep meds - all of which have proven side effects which in my mind are far greater than natural hormones.
Of course manufacturers have to have products tested and trialled before being manufactured. That doesn't mean they shouldn't be testing and trialling them and bringing them to market.
And of course there is a lack of research, but because this is women's health and there is no money in it, it is unlikely that much research will be done any time soon - and personally I would rather not sit around with the life I had before, waiting for something which may never happen. I value the CHOICE to take the dosage I need - as clearly do many others.
I can't be bothered to argue back with you any more so won't be posting again.
I find it offensive that you want to question my treatment and decisions - without knowing anything about my history or experiences.
Very well said
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Well said Joziel :foryou:
This discussion really demonstrates what makes me angry about the Panorama programme and the state of menopause "care" in England currently. It's a polarised topic where the need for some to prove themselves right and others wrong is an academic argument and a sport. This comes at the expense of those woman who are suffering and struggling to cope.
The NHS resourcing issue is bad enough without bodies like the BMS taking this polarised stance rather than focusing on agreeing (not imposing) better guidelines and advice.
I'm struggling to take "enough" progesterone each month, I'm trying to understand exactly what risk this brings and it's really difficult as there is little research and much of the information stated is not backed up by published and linked research. Lots of robust, polarised opion but few facts.
I read a quote from a HCP the other day that said that gynaes seem to be concerned about the number of referrals for unscheduled bleeding for women on HRT so their approach seems to be moving towards prescribing increasingly higher levels of progesterone to reduce the demand. So we're told that there is no evidence for increasing oestrogen but it's OK to keep increasing P to much higher levels with (it appears) little consideration or evidence of the risks that this might bring, let alone consideration of the balance of hormones and how it might make women feel.
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Stick around joziel - it's what forums are for, discussion - often heated because the written word is static.
Out of interest and because I have yet to watch the programme: were all the ladies interviewed white because it is known that black skin makes absorption more difficult? [I'm too angry yet to watch ::) ]
Sometimes patients have to work with medics who are prepared to 'experiment' regardless of risk, in order to help with easing symptoms and for progress. For example, heart as well as kidney and lung transplants were pioneered when many medics thought these operations impossibly dangerous.
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Joziel, you've put up a great defence given the third degree cross examination you have been put through on this forum.
Well said and well done!
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I dont think anyone should be questioned or have to defend their individual circumstances or decisions that have been clearly thought out.
But I thought the main point of the whole LN uproar and panorama programme was the adopting of the very high estrogen approach as a mainstream approach. Which is not the same thing as an individual needing higher E, because it's proven they don't absorb.
:o
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Back in the day when Dr Miriam Stoppard was the HRT guru I was given HRT in pill form, that's all we had back then, but taking a pill every day was too much oestrogen for me, unpleasant side effects, so I took it upon myself to take a pill every other day and it suited me perfectly. When I told the GP what I had done she was very unhappy and gave me a right old telling off, telling me all the terrible things that could happen. I fought back and said we are all different and I as a very small woman could not take the dose as prescribed. I was absolutely fine on my regime for five years but was glad to come off HRT because of all the hassle that went with it.
Moral of the story, we are all individuals when it comes to treatment and it seems HRT continues to be the poison challis and anyone thinking outside the box shot down in flames.
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I'm not going anywhere ;D just not replying to the OP any longer to continue that convo.
Crispy, I haven't seen any evidence of high E doses as 'a mainstream approach' by Newson. The problem is that it is absolutely impossible (okay almost) for a woman to get prescribed above licensed doses by their GP. And there is an 18 month waiting list to get referred to an NHS menopause clinic. So what are all these suffering women who need higher doses supposed to do...? They go private. The NHS simply gives them no other options. That, or suffer. Or take a slew of psychiatric meds.
Which is all to say: The patient body which Newson Health has is already skewed towards women who need higher doses, simply because their needs are not being met elsewhere. It's a self-selecting population. There is a special irony about a system which fails women but doesn't care about that, then an organisation like Newson Health stepping in to meet their needs - and getting crap for it. Yes, there may be increased risks to treating this population - but does that mean no one should take that risk? Or the risk should be shunted out to Newson Health who can then be finger-pointed at, when the (inevitable) slightly increased risk becomes manifest?
Newson ran a survey and found that 25% of women registered with them don't absorb E well and need these higher doses. I don't know what the % is for women getting HRT from their GPs (assuming they even know they need higher doses and are not just being put on anti-depressants and fobbed off) but I'd bet it is lower in the general population.
I didn't know I needed higher doses when I first went to Newson. I went there because I was 42yo and my male GP had dismissed my symptoms and told me I was "too young" to have peri symptoms and that my bloods were "fine". He referred me to rheumatology for my joint pain. (Rheumatology told me to go on HRT and then come back, so maybe the message is getting out slowly.)
When I started at Newson, I was put on just 12.5mcg (half a 25 patch) and then increased to 25mcg and then to 50mcg, where I stayed for about 6 months. I wasn't just immediately put on high doses of E. That is happening for women who come to Newson already on the max licensed dose but still with symptoms - and Newson are then increasing above that accordingly.
I would say that I think Newson have in the past been a bit relaxed about P usage. I've always tolerated it well and taken a good amount of it but I do think that, in the past, if women couldn't tolerate it, they allowed them to take less. That might account for the cases discussed in the Panorama show. But I think that changed in recent years.
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This thread is about Louise Newson, not you or me, Joziel. I could write an essay about my perimenopause experience, but I think it wouldn’t be of much help, given that we’re all different, but I know how sharing and venting can be very helpful during this extremely stressful time.
I’m not questioning your treatment or your decisions. I’m discussing Louise Newson’s approach to treating patients with higher doses of oestrogen, and you are one of her patients on higher doses, because you are, according to her, a ‘poor absorber’ and also according to yourself and your blood tests results.
You have posted about your 12 pumps of gel plus a patch treatment a dozen or more times, sometimes encouraging other women to increase their oestrogen dose. Why is it alright to post about it but it’s not alright to discuss it?
Again, I’m not questioning your personal issues, all women in this forum have/had a lot of symptoms and each one has been struggling with something (health, marriage, children, work, ageing) that peri and menopause can negatively influence, so it’s quite pointless to dwell on them, bar for the sake of reassurance and support.
Good to know you are extremely happy to have found a clinic prepared to treat you with hormones instead of anti-depressants, although I don’t think they are mutually exclusive. Long may it continue.
’It’s not about serum estradiol levels. It’s about symptoms’
I agree. And yet you post a lot about serum estradiol levels and based on them you tweak your HRT regime, dosage and dose. I don’t know if you still discuss your treatment with Newson Health doctors, do you? Some women might be encouraged to do experiments with HRT without proper monitoring, but hey, we’re all adults, right? Live and let live/die.
‘Your care and concern about the application of alcohol and gel to women's skin is extremely moving, but please don't trouble yourself about it.’
I’m not troubling myself about it, this is a discussion forum, I’m discussing facts, not personal options or emotional responses to facts. It is troubling.
‘As for 'risk', the greater risk, for me, was death due to suicide. Marriage breakdown due to lack of sleep. Loss of income and then house as a result, because I can't work.’
I know what you mean, the same has happened to me. Although my suicidal ideation only happened after taking Utrogestan. Again, each personal experience is different. I can empathise, and if your current regime has controlled your symptoms, great, and if the benefits outweigh the risks (although they’re not entirely clear at this point, hence the discussion), great.
But why, oh why can’t I talk about it? You, Liz Earle, Louise Newson & Co can criticise the BMS, Paula Briggs, Heather Currie, and many other GPs and doctors using words like ‘gaslighting’, ‘scare mongering’, ‘witch-hunt’…
Quoting you, Joziel:
‘There is an absolute witch-hunt against Louise Newson going on behind the scenes - which extends to kicking her out the BMS. There are people in this thread saying 'but she has been kicked out the BMS' [shock horror] as if this is now proof that she is a dodgy doctor - rather than realising that the BMS would have us all dissing HRT and has been dragged screaming away from the WHI study, never really refuting it with any explicit statement to equal the intensity of their initial support of it. The BMS is ultra-conservative and relies on research which is outdated and incomplete (there will never be funded research of the sort which is needed because this is women's health and we are not talking about new drugs here, but cheap hormones). That doesn't make it any more 'right’.’
So you can criticise, but you can’t take criticism.
Quoting you again, Joziel:
‘Secondly, I can 100% guarantee that for every woman interviewed in that Panorama programme with some scary story about high doses of estrogen, they could, IF THEY'D WANTED, easily have found as many women - actually even more - who would have told stories of NEEDING those doses and not having symptom resolution on lower doses, besides having no side effects from this dosage. (Newson herself is just one such case. Me being another. Hundreds of thousands of other women all over social media who are her patients, being more.) The fact that they only interviewed women touting this one angle was incredibly one-sided and unfair and I really hope Newson has got her lawyers on this for sure. That is not neutral and unbiassed journalism, it's professional assassination and a take-down and slander - to present such a one-sided view.’
‘Professional assassination’, Liz Earle starts her video with ‘Forensic investigation’. FFS, are you really getting emotional balance from HRT and Newson’s Health app?
As for you, ladies, who are prompt to give your emotional support without discussing facts, all I can say is ‘sigh’.
I don’t post on MM any more because this forum is currently mainly about HRT, nothing against HRT, it’s just not the main subject of my menopause journey.
I wish you all good luck.
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It frightens, and angers, me that this ill-researched programme could have repercussions on the already dismal NHS menopause information available.
Thanks for the links in your post 23/10/24 joziel re Liz Earle's video and info on links to BBC and Ofcom. I am about to make use of them - having noted the deadline for Ofcom complaints is today.
:( Missed the Ofcom deadline - got my BBC complaint in but I need the BBC reply to do an Ofcom complaint.
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It frightens, and angers, me that this ill-researched programme could have repercussions on the already dismal NHS menopause information available.
Thanks for the links in your post 23/10/24 joziel re Liz Earle's video and info on links to BBC and Ofcom. I am about to make use of them - having noted the deadline for Ofcom complaints is today.
:( Missed the Ofcom deadline - got my BBC complaint in but I need the BBC reply to do an Ofcom complaint.
It's dreadful that a rubbish TV programme like that has done so much damage in an attempt to trash someone's professional reputation. Louise Newson has helped so many women that the NHS abandoned in the same way as the late Professor Studd.
The ultra conservative NHS, BMS etc will always stick rigidity to their self imposed guidelines and it took them years to finally concede that the badly conducted HRT studies in the early 2000s were worthless.
I would not question an HRT regime that clearly works for someone even if it is unconventional or off licence as long as they are being monitored properly with scans. I don't think people should live and die by studies either because they often conflict. Remember how much damage was caused by the abovementioned HRT studies where women were denied HRT for years and left to suffer. They set women's health back years.
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And there's the dire consequence of the programme - a comment posted 24/10/24 under Liz Earle's video by a lady trying to get HRT.
I won't quote as don't know if that's the done thing but the gist is -
went to GP last week with her report from the Newson Clinic and told no, won't give anything this woman suggests as she's being struck off.
As someone who is currently going through the process of increasing blood oestradiol levels this is alarming. Hopefully my GP is more enlightened - previous ones haven't been :(
It's been hard enough getting HRT in the first place. Now I fear some will refuse increases in levels even if under the 100. I'm hoping to increase to a level to help with bone density which I'm repeatedly told they don't prescribe HRT for.
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Sometimes I am glad I have had terrible symptoms because it has drawn my attention to ensure I have adequate hormones and hopefully am protected against a lot of the diseases of aging which I might otherwise have just overlooked or ignored if I didn't have immediate symptoms.
YES!! This!!!
I've said this several times on here over the years!!!
Now over 70 and still on HRT, fingers crossed, so far so good, no loss in height despite my mother in 90's having lost about 6 inches....
(I know a bit off topic but just catching up on the last couple of pages ...)
Hurdity x
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I don’t post on MM any more because this forum is currently mainly about HRT, nothing against HRT, it’s just not the main subject of my menopause journey.
This forum is about anything and everything to do with menopause (and much more!), not just HRT and all discussion is welcomed. There is a whole board dedicated to general health, as well as alternative treatments, and many threads about emotional and life issues where women seek and receive support.
I am curious to know where you do post - or rather, where there is a forum that offers equally wide-ranging advice, information and support as this one?
Clearly there are FB groups but the beauty of this one is that members are completely anonymous!
Hurdity x
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I have commented in this thread before, and understand that there are bound to be different views.
Hope that you find the following helpful--
https://vajenda.substack.com/p/a-master-class-in-hormone-levels
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To be perfectly honest Hurdity. I too find the forum very very HRT heavy.
And when trying to discuss bhrt (which itself is hrt!) I did not feel that 'all.discussion was welcome'. I found the whole experience quite stressful when trying to find help with non NHS hrt.
After all, we're all on this forum for one thing - to find help.
I think this is highlighted even more on this thread - where so many woman are keen to support higher (non NHS, BMS) dosing. Yet so few seem to support or want to discuss over the counter bhrt or clinic bhrt - which is often in lower doses! Snake oil central. But there are plenty of FB groups where people share and help on this topic.
As this thread is proving, most folks don't believe it's all about the documented 'science' as that's only the stuff they've bothered to research!
You can post anonymously on a FB group.
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On FB you can only post anonymously as the topic starter. You can't choose to comment on someone else's post anonymously which is a shame.
I think the issue with BHRT is that most of us don't know much about it as we have enough issues getting "normal" HRT!
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I wish Louise Newson could have spoken on that documentary; particularly around using local oestrogen whilst living with cancer.
As soon as I had my secondary diagnosis, wham, my vagifem and Ovestin were taken from me. Made to feel like a naughty child who wanted sweets but couldn’t have!
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There's absolutely no issue with folks not knowing anything about something. I do wonder where all those folks that go to bhrt clinics are?! ;D Must be happily getting on with their lives.
However, in that situation I'd expect them to stay quiet rather than shoot down a conversation between, often desperate, ladies discussing something they are using in the hope it might help them and others.
Just kindly pointing out to Hurdity that not all discussion feels welcome on this forum. ;)
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There's absolutely no issue with folks not knowing anything about something. I do wonder where all those folks that go to bhrt clinics are?! ;D Must be happily getting on with their lives.
However, in that situation I'd expect them to stay quiet rather than shoot down a conversation between, often desperate, ladies discussing something they are using in the hope it might help them and others.
Just kindly pointing out to Hurdity that not all discussion feels welcome on this forum. ;)
Maybe you make a good point about BHRT patients doing well on it so not needing forums!
Thanks for flagging BHRT I've just been looking at it. I'm struggling with progesterone and have fewer options because of breast cancer risks.
It might be something for me to consider if I can't make my current route work.
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There's absolutely no issue with folks not knowing anything about something. I do wonder where all those folks that go to bhrt clinics are?! ;D Must be happily getting on with their lives.
However, in that situation I'd expect them to stay quiet rather than shoot down a conversation between, often desperate, ladies discussing something they are using in the hope it might help them and others.
Just kindly pointing out to Hurdity that not all discussion feels welcome on this forum. ;)
I assume you are referring to my thread on compounded hormones in the Alternative Therapies section.
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I think I may be Mary. ;D.
I just think it's sad that ladies leave the forum because they feel they cannot discuss their own issues - or the things they may be trialling to help them. Without unwanted input.
I certainly do not feel that 'all discussions are welcome'.
Seaside girl - you should look at Mary's old thread. There are people using bhrt, particularly where they couldn't tolerate conventional progesterone. You'll find it on the 'alternatives' thread x.
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I think I may be Mary. ;D.
I just think it's sad that ladies leave the forum because they feel they cannot discuss their own issues - or the things they may be trialling to help them. Without unwanted input.
I certainly do not feel that 'all discussions are welcome'.
Seaside girl - you should look at Mary's old thread. There are people using bhrt, particularly where they couldn't tolerate conventional progesterone. You'll find it on the 'alternatives' thread x.
A lot of women seem to be scared about speaking freely.
My thread on compounded hormones has been read over 135,000 times but it's mostly ignored and that is probably because people have quietly read through the different posts and don't want to put themselves on offer and face a barrage of "definitely deadly, unregulated" warnings about bhrt. I find it tedious but I don't particularly care because I am in a good position myself HRT wise and just want to try and help women who are struggling and/or need information. That said, it is very off putting when people feel that new ideas/different products are being closed down and threads are being chaperoned - it sometimes feels like people are arguing for the sake of arguing.
I think bhrt (progesterone in my case) is superb and it definitely works 100%. In my opinion, it's better to use a so called unregulated HRT regime and be thoroughly checked with scans than to use a regulated HRT regime and never be scanned ...until something goes wrong. Obviously the same applies to Louise Newson's regimes.
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I would like to see more threads on living with cancer drugs and the menopause. I feel sure if I started a thread on that, it would be read many times, but replies would be few.
No one seems to discuss it, yet there are some of us poor buggars, who actually have to live with disease AND ride the debilitating storm that menopause can be.
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I agree Mary.
Nas. Totally get that. It's awful for you. And you need/want support. Again then, where are all those ladies in a similar position?
I do think the 'conventional' HRT route, or no route - rules this forum. So maybe this discussion on LN's non conventional treatments is a really useful for breaking the mould on this forum.
I'm like Mary, I'm like a dog with a bone. If I want to start a thread on something I will. It's sad if there's noone on the forum to answer it Nas. :(. It's even safer if they're there reading, but feel too intimidated to reply. That's the bit that needs to stop.
As Hurdity says 'This forum is about anything and everything to do with menopause (and much more!), not just HRT and all discussion is welcomed' so we should all make sure this is the case.
I know I've personally learnt a lot about meno from you ladies. Most of it the unconventional stuff. As I can find info on the conventional stuff easily elsewhere. :-*
Just a thought - maybe what's needed is a debate section, so that those that like a good argument can have it, but they don't clog up normal posts with strong views and opinions? ;)
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CrispyChick thanks for the signpost to Mary's thread, I'm 3 pages in to it - I see people like me...
Nas, I hear you re cancer, I was lucky my family history and bolshiness meant that my issues were discovered aged 46 on family history screening whilst still Ductal carcinoma in situ rather than invasive BC.
There are definitely people around who argue because they can!
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Tnx Heather.
Still haven't seen the programme but who instigated such an uninformed topic for broadcasting :-\, was there a sponsor for example.
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Hi Nas
There was a podcast/youtube about cancer at Hayley Street Emporium this week. They have really good podcasts. I would like to see more threads on living with cancer drugs and the menopause. I feel sure if I started a thread on that, it would be read many times, but replies would be few.
No one seems to discuss it, yet there are some of us poor buggars, who actually have to live with disease AND ride the debilitating storm that menopause can be.
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I don’t post on MM any more because this forum is currently mainly about HRT, nothing against HRT, it’s just not the main subject of my menopause journey.
This forum is about anything and everything to do with menopause (and much more!), not just HRT and all discussion is welcomed. There is a whole board dedicated to general health, as well as alternative treatments, and many threads about emotional and life issues where women seek and receive support.
I am curious to know where you do post - or rather, where there is a forum that offers equally wide-ranging advice, information and support as this one?
Clearly there are FB groups but the beauty of this one is that members are completely anonymous!
Hurdity x
I'm not complaining about the MenopauseMatters website or forum, just stating a fact, HRT dominates the forum, and I have absolutely nothing against it, it's the current trend and a complex topic. I prefer discussing scientific evidence than personal experiences and experiments with hormones. I do not post on any other public forums or social media, but I discuss this topic with friends (including doctors and scientists).
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:-\. I prefer discussing scientific evidence than personal experiences and experiments with hormones. :-\
Sadly not all scientific evidence is correct ..... including dis-credited Papers regarding HRT several years ago. 'Evidence' also depends on who might sponsor the research and how many of the results are left out of the final publications: i.e. if something doesn't 'work' which may alter what the researchers want to present then they won't publish it even if it's Peer Reviewed.
This Forum is about sharing real experiences, info that can be used, shelved or disregarded.
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I'm not complaining about the MenopauseMatters website or forum, just stating a fact, HRT dominates the forum, and I have absolutely nothing against it, it's the current trend and a complex topic. I prefer discussing scientific evidence than personal experiences and experiments with hormones. I do not post on any other public forums or social media, but I discuss this topic with friends (including doctors and scientists)
What sort of scientific evidence do you want to discuss and how will that help you deal with menopause symptoms?
The two HRT studies in the early 2000s did an enormous amount of damage and millions of women are suffering today because of those wretched studies.
If a menopause/HRT study is conducted and then another study comes along and conflicts with it and then, horror of horrors, a third study comes along and conflicts with the first two, what are you going to do? Do you pick the study that gives you the most convenient answers and go with that?
Well said CLKD.
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:-\. I prefer discussing scientific evidence than personal experiences and experiments with hormones. :-\
I prefer, meaning, it's my choice. I'm not criticising the forum or its members. The forum is very useful. I do read posts about personal experiences, and some are interesting and useful, but if all I can add is 'I had the same', I leave it to other members who like to chat about their personal experiences. I have posted some links to studies and videos (including one discussion panel with Dr Heather Currie, about HRT!), but no one seemed to be interested. Fair enough, not everyone is interested in scientific research. I don't post any more, but I still read the posts.
Sadly not all scientific evidence is correct ..... including dis-credited Papers regarding HRT several years ago. 'Evidence' also depends on who might sponsor the research and how many of the results are left out of the final publications: i.e. if something doesn't 'work' which may alter what the researchers want to present then they won't publish it even if it's Peer Reviewed.
Fortunately, evidence is evidence, and the scientific interpretation, which depends on correctly applying the scientific method, is subjected to scientific scrutiny, including disclosing sponsors. I think you (and Mary G) may be confusing Menopause with HRT. 'Dis-credited Papers regarding HRT' is a drop in the ocean of research on menopause.
This Forum is about sharing real experiences, info that can be used, shelved or disregarded.
I didn't say it wasn't, but I think this Forum is more than that. I think members have the right to discuss posts that offer potentially dangerous advice, without scientifc evidence; the fact that science is not perfect doesn't justify offering advice based solely on personal experience, given that we're all different. I'm not saying members can't give medical advice, but I think they shouldn't. And how do you know what information 'can be used, shelved or disregarded', without discussion? I certainly don't know how.
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I'm not complaining about the MenopauseMatters website or forum, just stating a fact, HRT dominates the forum, and I have absolutely nothing against it, it's the current trend and a complex topic. I prefer discussing scientific evidence than personal experiences and experiments with hormones. I do not post on any other public forums or social media, but I discuss this topic with friends (including doctors and scientists)
What sort of scientific evidence do you want to discuss and how will that help you deal with menopause symptoms?
The two HRT studies in the early 2000s did an enormous amount of damage and millions of women are suffering today because of those wretched studies.
If a menopause/HRT study is conducted and then another study comes along and conflicts with it and then, horror of horrors, a third study comes along and conflicts with the first two, what are you going to do? Do you pick the study that gives you the most convenient answers and go with that?
Well said CLKD.
Maybe you're confusing HRT with Menopause. There's a lot of research out there, besides 'the two HRT studies'.
What you are describing is how science works, and as imperfect as it is it's the best thing we have so far to help us take informed decisions.
I don't 'pick studies', and I have no idea what you mean by 'convenient answers', I read the articles, read the references, author's affiliation and confict of interests, and I keep reading them because there is no ultimate truth in science.
In the meantime I try to make sense of what is happening to my body.
If I need a drug for a medical reason, I take it, but not before careful consideration regarding my medical history, including genetics and other drugs, supplements or herbal teas that could interact with that particular drug.
This is how I try to have some control over any health issues I might have, including menopause. I don't know any doctor who actually 'knows' my body from the medical point of view to do it for me. (and that's why I find it troubling that many women seem to think Louise Newson knows their bodies better than themselves).
I usually don't trust information regarding drugs and treatments offered on social media, but if there is something that might help me, I read the available scientific articles about it and give it some thought before I discuss it with a doctor.
I'm not against people trying to feel better by following other people's advice, adults can (or should) think for themselves. This is a discussion forum (or so I thought) and the topic is 'Louise Newson'. She is a medical practitioner, not just a menopausal woman discussing personal experiences in a public forum.
I don't post any more on MM because my interest in HRT in just scientific, given that I'm not taking HRT, but every time I have posted evidence that doesn't quite fit into what some members want to read (is that what you call 'convenient answers'?), they just ignored my posts, or commented that the video was 'too long' (along with a rolling eyes emoji). Funny, isn't it?
Find as much good quality information as possible and listen to your own body, Know Thyself. That's what I try to do.
This is my last post, but if I find anything really useful to post I will post again, even if nobody is interested, I just don't want to derail the topic, which I think is very important.
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U missed one of my points Sage - that many studies miss out details of 'failed' or 'unexpected' results that might screw the overall intentions in order to get their products out there. As DH is a research scientist he can pick apart many studies which the man in the street is unlikely to be able to interpret.
Many women have to rely on shared experiences: either sitting around as friends or by joining Forums: as there are many medics with little or no knowledge about IBS, Menopause, depression ...... too many stick to the 'guidelines' and are afraid to take a patient's individual needs into account , fortunately our GP is willing to listen and work with my illness and was able to diagnose my VA without actually discussing it with me face2face. He found yet another urine sample in my name waiting for testing and asked how many had been sent to a Lab., not impressed to find that none had been tested: he then rang me to let me know that a script for VA was waiting.
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I watched the Liz Earle YouTube video which did have some inaccuracies which I questioned on her IG page. She did respond to these but did not answer my questions. I also shared this article to her IG page : https://vajenda.substack.com/p/a-master-class-in-hormone-levels.
And I was immediately blocked from her page for sharing misleading information! I have a screenshot of the message blocking me!
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Hmmm…. That’s very interesting Elliebee, agree with her or you’re out! Not really the point of an open discussion!
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Lesred, it certainly seems that way. But I’m hoping maybe 🤔 an IG blip! I know she is good pals with LN and is keen to defend her which I understand.
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Let’s hope it’s just a blip as we should all remain open to other points of view especially with the minefield that is menopause! :)
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It appears several people who disagreed with LE have been blocked and prevented from posting on Ig. 😬
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I watched the Liz Earle video and thought she made some good points but puzzled over the comment that higher levels of progesterone are not needed for higher levels of oestrogen unless I have misunderstood her point there? One contributing factor for endometrial cancer can be unopposed oestrogen.
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Lots of people have questioned her on this on her Instagram post. Have a read of the post Dr Currie posted on here re this article :-
https://vajenda.substack.com/p/a-master-class-in-hormone-levels
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I watched the Liz Earle video and thought she made some good points but puzzled over the comment that higher levels of progesterone are not needed for higher levels of oestrogen unless I have misunderstood her point there? One contributing factor for endometrial cancer can be unopposed oestrogen.
There are not currently any scientific studies proving that higher doses are needed with higher doses of estrogen. That's not to say it isn't the case, they simply haven't been done.
I think the issue is that if woman A uses a 50mcg patch and woman B uses 200mcg, but they both have a plasma level of 300pmol/L due to individual differences in absorption and metabolism, there is no logic to woman B taking 4 times as much progesterone.
In practice however, particularly within the NHS where plasma levels are not checked and endometrial thickness is not monitored, a more cautious approach is needed.
Personally I think everyone should know their levels, and get a pelvic scan every 1-2 years as part of routine well woman screening.
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In practice however, particularly within the NHS where plasma levels are not checked and endometrial thickness is not monitored, a more cautious approach is needed.
Personally I think everyone should know their levels, and get a pelvic scan every 1-2 years as part of routine well woman screening.
Perhaps it's time for the NHS to own up and have an honest conversation about it. It's obviously about cost but instead of admitting it, they have a zero tolerance policy towards any low/lower dose progesterone regimes (including lower dose coils) and refuse to admit that it's possible and safe to deviate from their rigid guidelines even under supervision ie transvaginal scans.
The NHS party line on hormone blood tests is that they don't work. There may be some truth in that pre menopause but post menopause, it's complete nonsense and it's the only way to find out how well a woman is absorbing HRT.
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Re progesterone doses, I can't remember if I've said it already here but I saw a comment from an HCP elsewhere who said she's seeing gynaes ramping up progesterone doses widely to reduce the demand of unscheduled bleeding.
For those of us who struggle with progesterone this is a nightmare scenario.
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In practice however, particularly within the NHS where plasma levels are not checked and endometrial thickness is not monitored, a more cautious approach is needed.
Personally I think everyone should know their levels, and get a pelvic scan every 1-2 years as part of routine well woman screening.
Perhaps it's time for the NHS to own up and have an honest conversation about it. It's obviously about cost but instead of admitting it, they have a zero tolerance policy towards any low/lower dose progesterone regimes (including lower dose coils) and refuse to admit that it's possible and safe to deviate from their rigid guidelines even under supervision ie transvaginal scans.
The NHS party line on hormone blood tests is that they don't work. There may be some truth in that pre menopause but post menopause, it's complete nonsense and it's the only way to find out how well a woman is absorbing HRT.
Totally agree with this!
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I've done a search to C whether Liz Earle has any medical background and can find that she's into beauty and nutrition rather than having any medical qualifications :-\ .
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It's about cost. Recently Two drugs that will help patients with Alzheimer's have been approved but NICE have rejected them. Menopause is a huge 'alternative' industry which means that the Government of the day can ignore the reality of those women that require educated conversations regarding peri-and menopause with professionals who know about this 'time of Life', i.e. The Change.
But that would mean 'them' having to listen and take on board that women need to be valued throughout our lives and not ignored when symptoms cause some to stop working because they feel too ill to continue. :'(.
Education needs to begin from the bottom upwards, i.e. GP Trainees with ongoing updating throughout their careers: listening to how women suffer and why some need to seek private or alternative treatment options.
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Agree with Mary G and CLKD.
It’s time for the Government/NICE/NHS to face the music. Women are living longer, working high powered jobs, and often carrying the burden of caring for elderly relatives and teens. It is not good enough for a woman to have to sit in front of an ill menopause trained medic and be told “ no, you can’t have HRT, no, you can’t exceed 4 pumps of gel, no you can’t stay on HRT for life” Then have to spend £££ on private consultations, to feel remotely human and listened to.
As Mary mentioned in one of her earlier posts, women cannot live and die by often outdated and unreliable statistics.
I would often like to know what some of these ( often female anti HRT GPS in particular) would do, if menopause jumped up and bit them on the butt and stopped them dead in their tracks?
Put menopause on the National Curriculum and get rid of some of the other crap.
Enough is enough. If you need 5/6/20 pumps of gel to function, then that’s what you need!
Oh and ditch the stupid guidelines. Women are human beings, not robots :o
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There's no possibility of ditching guidelines because you can't run a huge service like the NHS without policy.
That's said, research should be academic rather than industry based - where the first priority is always profit. Similarly, treatment should be provided on the basis of need not privilege in terms of who can afford what.
Until we sort out the above, nothings going to change.
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This just highlights the difference in approach. LH is trying to help women feel better, the BMS and the NHS guidelines are doing everything possible to prevent it. The increasing number of women who find they need more than 100mcg to feel normal are showing the guidelines to be suspect. So naturally the answer is to discredit LN rather than to question the guidelines. I find it a bit scary that their answer is to suggest ADs, cbt etc instead - where have we heard that one before?? And, as above, the use of 'there is no evidence for' when they really mean 'we haven't done any research'. Most women don't see a private specialist because they want to spend money, they do it because the NHS has failed them and now they seem to be trying to take that option away.
A tenner to a charity of your choice if in 20 years time when it's too late for us they don't finally admit 100mcg isn't enough for many women.
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Good points sheila99 :thankyou:
My Charity will be Search and Rescue ;-) [they helped when my friend's dog was stolen 12 months ago]
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This just highlights the difference in approach. LH is trying to help women feel better, the BMS and the NHS guidelines are doing everything possible to prevent it. The increasing number of women who find they need more than 100mcg to feel normal are showing the guidelines to be suspect. So naturally the answer is to discredit LN rather than to question the guidelines. I find it a bit scary that their answer is to suggest ADs, cbt etc instead - where have we heard that one before?? And, as above, the use of 'there is no evidence for' when they really mean 'we haven't done any research'. Most women don't see a private specialist because they want to spend money, they do it because the NHS has failed them and now they seem to be trying to take that option away.
A tenner to a charity of your choice if in 20 years time when it's too late for us they don't finally admit 100mcg isn't enough for many women.
I'm confused. You seem to be saying that until there's reliable research findings it's ok that it's all personal decisions, i.e. up to individual doctors and patients. This isn't a scientific way of doing things. Medicine and medical treatment has to be scientific not based on anecdotes.
You also seem to be saying that in the absence of any reliable data that confirms these anecdotes, we should keep looking until we find it. This isn't a scientific methodology either.
As others have said, HRT is one element of menopause. I agree there should be more research, but not that HRT should be prioritised within that research.
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I do think they need to actually do the research before they can say it isn't safe though. I don't think Sheila is talking about doing more research until they get the answer they want, rather that insufficient research has been undertaken in the first place to either prove or disprove. That requires a large enough scientific trial of women using the higher doses, with safety mechanisms in place, such as scans to check for hyperplasia, to see if it actually does happen. The evidence will only ever be anecdotal until the research is done.
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The same also applies at the lower end of the spectrum where woman ate using bhrt clinics to get bespoke amounts of E and P because the standard doses don't suit.
This is frowned upon by the BMS, the NHS and, many times, by vocal members on this forum.
Nope, they don't have the scientific studies either - but they do test, adjust, test again and insist on scans. I know which I think is safer.
It s very very obviously not 'one size (or perhaps 4 in the NHS) fits all'. Look at the problems many woman have with 100mg utrogestan. No other natural prog option. Yet some of these woman could be on tiny doses of E. Bonkers.
It's the biggest medical mess I've come across so far in my life.
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There probably isn't any1 who will sponsor any Research into Menopause because Companies are already manufacturing specific doses of medication across the board which includes HRT requirements. Until women are actually asked how symptoms affect them and how different regimes help, these issues will continue.
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Some very interesting comments from Penguin, Nas, Crispy, CLKD and Sheila which I agree with.
As Crispy said, the whole area of the menopause and HRT is a complete mess and has been for years. The NHS and the BMS are all over the place and seem to be getting themselves tied up in knots over studies and ideology - they come across as anti private healthcare.
I wonder if the medical profession bang on about studies and guidelines incessantly in other areas of medicine? Is so much proof/evidence needed for thyroid medication/treatment for example?
Obviously the NHS need to have some basic guidelines but they also need maximum flexibility. Guidelines are supposed to be guidelines, not gospel.
Bottom line, the medics who are slagging off Louise Newson are probably happy to sit in front of a woman whose life is falling apart because their HRT dose is completely wrong and needs adjusting but they refuse to help them because of the NHS guidelines. It's a disgrace. No wonder so many women seek help privately.
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Guidelines: mayB there is so much litigation in various areas that it is probably safer for them to stick to guidelines than risk listening to the patient then thinking outside the box ?
Certainly as far as I am aware with regards Thyroid function tests, even when patients continue to complain of symptoms, if blood tests are 'within normal limits' they are unlikely to get important extra tests performed. ?? T4 and T5 ??
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The same also applies at the lower end of the spectrum where woman ate using bhrt clinics to get bespoke amounts of E and P because the standard doses don't suit.
This is frowned upon by the BMS, the NHS and, many times, by vocal members on this forum.
Nope, they don't have the scientific studies either - but they do test, adjust, test again and insist on scans. I know which I think is safer.
It s very very obviously not 'one size (or perhaps 4 in the NHS) fits all'. Look at the problems many woman have with 100mg utrogestan. No other natural prog option. Yet some of these woman could be on tiny doses of E. Bonkers.
It's the biggest medical mess I've come across so far in my life.
Yep also agree with this too. Was responding to ElkWarning's response to Sheila about higher doses but also applies to BHRT too. They need to do the research rather than just say we don't know if it is safe.
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Guidelines: mayB there is so much litigation in various areas that it is probably safer for them to stick to guidelines than risk listening to the patient then thinking outside the box ?
Certainly as far as I am aware with regards Thyroid function tests, even when patients continue to complain of symptoms, if blood tests are 'within normal limits' they are unlikely to get important extra tests performed. ?? T4 and T5 ??
It's not much different with mental health either. The only reason I see a private psychiatrist is because my NHS GP lacked the expertise and flexibility to diagnose correctly and prescribe a toolkit that actually worked.
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Penguin I was lucky in that my GP realised that I was 'on the edge' - when depressed I bend over and he had seen me out walking the dog and called me in for a chat - so he arranged for a Psychiatrist to attend the house after which we worked together to find a regime which helps.
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I can't remember where I came across this idea, some podcast I was listening to I think, however, someone made the point that as oestrogen, progesterone, etc. are natural hormones they therefore can't be patented. Therefore pharma doesn't make the profits they want, and so have no incentive to carry out further studies. On the flip side, antidepressants and other pharmaceuticals can be patented and therefore are of much more financial interest.
Sad, isn't it? But it seems unlikely that the studies that are needed will be carried out (if I've remembered that correctly).
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Penguin I was lucky in that my GP realised that I was 'on the edge' - when depressed I bend over and he had seen me out walking the dog and called me in for a chat - so he arranged for a Psychiatrist to attend the house after which we worked together to find a regime which helps.
That would have been awhile ago tho wouldn't it, I don't think NHS would have the resources to do that now. I work for a local authority and even really urgent cases don't get treated as such despite Right Care Right Person. It is very sad.
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Some very interesting comments from Penguin, Nas, Crispy, CLKD and Sheila which I agree with.
As Crispy said, the whole area of the menopause and HRT is a complete mess and has been for years. The NHS and the BMS are all over the place and seem to be getting themselves tied up in knots over studies and ideology - they come across as anti private healthcare.
I wonder if the medical profession bang on about studies and guidelines incessantly in other areas of medicine? Is so much proof/evidence needed for thyroid medication/treatment for example?
Obviously the NHS need to have some basic guidelines but they also need maximum flexibility. Guidelines are supposed to be guidelines, not gospel.
Bottom line, the medics who are slagging off Louise Newson are probably happy to sit in front of a woman whose life is falling apart because their HRT dose is completely wrong and needs adjusting but they refuse to help them because of the NHS guidelines. It's a disgrace. No wonder so many women seek help privately.
This exactly!
We are not in a “ one size fits all” situation here. Where did the “ maximum 4 pumps/100mg patch guidance come from anyway? NICE?
What about younger women with premature ovarian failure? Poor absorbers, those in surgical menopause and dare I say it, those of us plunged into the depths of hell, due to cancer? (Just on the cancer front, they
(being the NHS, were quick to take my HRT away, no tapering off slowly, just an offer of any anti depressant I wanted. Then when I started sweating and flushing profusely, proceeded to pump me full of antibiotics!!! )
This is the biggest medical catastrophe for a long time.
Indeed, guidelines are just that. The reality is, there are so many women who just don’t fall within these “ guidelines” Crispy, myself and many other women who need more bespoke treatment, are being failed and as a result, are forced to see private specialists such as LN.
Given that women make up a huge percentage of the UK workforce, it’s a disgrace. Crispy off work, me hanging by a thread and many others in difficult situations.
Obviously isn’t just about HRT, but even investigating non hormonal treatments, is a task and a half. Also, that documentary began with the herbal “ remedies” and how hit and miss they are.
How about a documentary on how effective £16 Menopace actually is, if HRT is meant be “ gold standard “ treatment?
Where is Davina?? ;D
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Penguin - in the 1990s.
Davina - mayB send her a message Nas ? ;-)
Menopausal women are suddenly an issue and the governments of the day nor the NHS has any idea what is required!
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CLKD, maybe I should!
Dear Davina,
Now that you’ve successfully put menopause on the map, please could you now fix the (existential crisis ?) otherwise known as menopause care for normal people?
Oh and if you could get Veoza fast tracked onto the NHS, I would be eternally grateful.
Reason being, I can’t really afford the £62 for 28 daily tablets, to curb my debilitating night sweats.
Many thanks.
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I feel a March approaching, I'll fire up the charabanc ;-)
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;D
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Not going to walk if it's raining, snowing, too hot, icy ............ :whist:
I need to get onto our local Surgeries as there is nothing about menopause in the waiting rooms, if I forget, please :kick:
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CLKD, maybe I should!
Dear Davina,
Now that you’ve successfully put menopause on the map, please could you now fix the (existential crisis ?) otherwise known as menopause care for normal people?
Oh and if you could get Veoza fast tracked onto the NHS, I would be eternally grateful.
Reason being, I can’t really afford the £62 for 28 daily tablets, to curb my debilitating night sweats.
Many thanks.
What tablets are those please?
Why do you have to pay?
Evorel got rid of my night sweats but they came back so am now looking into testosterone deficiency.
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Not surprised, for the reasons you mention.
My experience of menopause doctors, having paid to see about 5 different ones over the last 5 years, is that they have their own "camp" or fixed mindset. You get those like Louise Newsom who just think ESTROGEN ESTROGEN and MORE ESTROGEN and then you have others (eg Marian Gluck clinic and Lara Briden) who think Progesterone is the answer to everything. Akin to Louise Newsom I know of places promoting incredibly worrying high doses of Progesterone daily as the answer.
Incidentally I experience the same thing when it comes to women generally... people want to help and it's human nature for people to feel what worked for them will work for others. But the reality is there is no fixed answer and such high variability between women and what their bodies need. For some, Estrogen will be the answer. Many others can't tolerate it at all (there is not yet enough of this being discussed, but I imagine it will come in time).
Will be interesting to see how things pan out for Louise Newsom
That's pretty discouraging, I thought, with all the publicity, private menopause clinics would be more helpful. I can afford to have a consultation with one, and hopefully get the right hormones, I am post meno, then I hope my GP will prescribe if the private people think I need it, and will start off with a private prescription. I don't want to go to four or five.
You're right about post and peri being different, are you peri?
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I had a problem with Newsom as I found there was too rigid a protocol. No testosterone unless Estrogen reached a certain level, no transdermal progesterone, rigid dosing.
I found with the private clinics (Gluck et al) they were prepared to start me on very low dose as I am sensitive to everything. They would prescribe a low combination to get me started. As it happens I did not continue but I can relate to the mega dose 'one size fits all' approach from the Newsom clinic. They did not appreciate me doing my own research (there are papers to suggest very low dose is good for bones for example) and would not consider any flexibility even though the low dose is LESS of a risk...
Hello, I am confused.
In Louise Newsons video, she says that testosterone helps oestrogen production.
Do you mean the oestrogen has to a certain low or high level with Newson clinics?
I ask because I am looking for a private clinic but, while I am a fan of Newson, I hear some bad reports about the clinics online.
It's a shame they did not appreciate you doing your own research, I know some NHS medics can be like that not I did not know private ones could be.
I got a lot of my information on the importance of testosterone from Newson herself on her videos and podcasts, which I thought were very good. I am post meno 25mcg E and 200mg P as the gynae put me on that for bleeding, luckily I still have the letter.
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I was quite surprised to see one of the BBC online headline news items this morning. It looks like her clinic is being investigated for prescribing high doses of HRT. And she has lost her accreditation with the British Menopause Society.
Although on reflection maybe I am not so surprised. People were starting to speak out on Instagram etc.
What does everyone think about this?
Pretty bad timing for her as she is in the middle of a UK tour.
Even as a lay person and patient, I don't have the expertise I would need to form an opinion about this or any other practitioner. I have strong opinions about my own experience, but they are just my opinions. In other words, I don't know anything about HRT, but I know what I like.
However, the word "Panorama" immediately elicits side-eye from me. I'm still offended by the unscientific and pejorative episode they spewed out about ADHD in the 90s - one of the most extensively studied disorders, with truckloads of published research. I won't go off on that topic, but I have never taken Panorama seriously since then.
I take note of what some here have said about individual practitioners' ideological commitment to one specific approach. I'm still feeling rubbed up the wrong way by my specialist's report, because the more I read it the more skewed it seems towards representing my lifestyle as more unhealthy than it is.
(E.g. "has recently started doing some $specific_exercise", as if I'd said I made a resolution to do one sit-up every other Thursday and I've managed three Thursdays in a row!!1!! Whereas in fact, I made a very specific point about suddenly reaching a performance milestone at $specific_exercise after EIGHT. YEARS.)
But because she specializes in mental health and mindfulness, it has to be that my mental health and mindfulness aren't as good as they could be. Or perhaps I'm not being fair. Anyway... I should have read her profile more carefully, it's really on me that I got mindfulness flung at me when I'm not really in the market for that. At the same time, a market is what it is.
I'm a lay patient who is looking for a private meno clinic and am disappointed to hear negative experiences from some women even with private doctors.
The way I am feeling, I can't be arsed exercising, it's beyond laziness, behind with chores, and it seems to be getting worse, I am post meno 58yrs on 25mcg E and 200mg daily P, approved by NHS gynae after investigative surgery for bleeding.
I was ok on 25, as I had gone through peri, so no flushes came back but like Dr Louise Newson says on her video, I can't pinpoint when things seemed to get worse, I would pin it at early 2022 with daily loose stools, more night sweats, more flushing, but nowhere near as bad as peri, and I kinda went into denial when I started reading about testosterone requests for women on here, dreading the hoops I would have to jump through.
I tried increasing my E, no difference, it's only recently I became interested in testosterone and found out so was lots of other women in the uk, the Davina thing etc.
I ended up relapsing on drugs in 2022, due to low moods, but luckily I have stayed sober since January of this year and ever since, I see a resurgence in meno symptoms.
Newson seemed to talk me individually on one video, but now I am confused as some online experiences of visits to her clinics suggest dissatisfaction, nothing to do with the program, more their protocol.
I think the program was bu11shit.
I want to pay hundreds of pounds to be given more E and not refused T, or a test for it.
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I am with the Newson Clinic and I was started on testosterone from the beginning of my HRT journey and without testing my existing testosterone levels and without my estrogen levels being tested either.
So it's not true that E has to be at a specific place.
Be aware that there are dozens and dozens of doctors working for the Newson Clinic and they are not all in total agreement on absolutely everything. They are entitled to their own opinions and clinical judgement and anything one particular doctor has done shouldn't be understood as indicative of a clinic-wide practice.
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I am with the Newson Clinic and I was started on testosterone from the beginning of my HRT journey and without testing my existing testosterone levels and without my estrogen levels being tested either.
So it's not true that E has to be at a specific place.
Be aware that there are dozens and dozens of doctors working for the Newson Clinic and they are not all in total agreement on absolutely everything. They are entitled to their own opinions and clinical judgement and anything one particular doctor has done shouldn't be understood as indicative of a clinic-wide practice.
Hello
I read in one of your other posts you were started on testosterone from the beginning without testing my existing testosterone levels and without your estrogen levels being tested either.
I understand Newson is a big organisation with lots of staff who will be different with each patient, but I have "What if I get unsatisfactory treatment" not just health but one lady on here said they took ages to reply to emails etc and was blocked access to blood results by a phlebotomist they hire.
I will see my GP tomorrow and lie that my "relationship" is suffering due to low sex drive, causing immense psychological distress, I am single. I aim for an NHS test, dunno if private people will want to test again, I might ask to be tested for E and P by my surgery as the private people might want those results as well.
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It will just depend on whether testosterone is in the formulary for the NHS in the area where you live. It isn't for me, so it doesn't matter if I say I have low libido or give any other reason - I won't get prescribed T on the NHS.
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It will just depend on whether testosterone is in the formulary for the NHS in the area where you live. It isn't for me, so it doesn't matter if I say I have low libido or give any other reason - I won't get prescribed T on the NHS.
Hi there.
I visited my GP today, who had no problem prescribing testosterone depending on my blood test results, which I will know after the 15th November.
This was a nice surprise to hear.
She also increased my E to 50, and wants to titrate up only to stop if I bleed like before.
Sorry this is a real postcode lottery.
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It will just depend on whether testosterone is in the formulary for the NHS in the area where you live. It isn't for me, so it doesn't matter if I say I have low libido or give any other reason - I won't get prescribed T on the NHS.
Hi there.
I visited my GP today, who had no problem prescribing testosterone depending on my blood test results, which I will know after the 15th November.
This was a nice surprise to hear.
She also increased my E to 50, and wants to titrate up only to stop if I bleed like before.
Sorry this is a real postcode lottery.
My GP said the same re testosterone but then insisted on using the lab reference range which said 0.1 is "normal" so she wouldn't prescibe it🙄.
I went back to Newson, they prescribed as 0.8 is low and I managed to get a different GP at the practice to take on the repeat.
I don't want to burst your bubble but you might want to formulate an argument if your GP says the same re ref range. The NICE guidelines re testosterone don't give a level and day it can be prescribed for low libido (assuming it is on your formulary as Joziel says)
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It will just depend on whether testosterone is in the formulary for the NHS in the area where you live. It isn't for me, so it doesn't matter if I say I have low libido or give any other reason - I won't get prescribed T on the NHS.
Hi there.
I visited my GP today, who had no problem prescribing testosterone depending on my blood test results, which I will know after the 15th November.
This was a nice surprise to hear.
She also increased my E to 50, and wants to titrate up only to stop if I bleed like before.
Sorry this is a real postcode lottery.
My GP said the same re testosterone but then insisted on using the lab reference range which said 0.1 is "normal" so she wouldn't prescibe it🙄.
I went back to Newson, they prescribed as 0.8 is low and I managed to get a different GP at the practice to take on the repeat.
I don't want to burst your bubble but you might want to formulate an argument if your GP says the same re ref range. The NICE guidelines re testosterone don't give a level and day it can be prescribed for low libido (assuming it is on your formulary as Joziel says)
Hello
Sorry to hear your GP would not prescribe testosterone.
Sorry I am on the autistic spectrum and struggle to interpret what you meant by formulating an argument. What would I say to my GP? Thanks.
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Hi Dandelion
So I expected that the GP would recognise that 0.8 Testosterone was low and that as I am symptomatic (zero libido) that it would be worth trying T.
What happened was that she said it was in range so, normal therefore nothing to treat. The reference range on my test started at 0.1 so on that basis virtually nobody will be out of range!
Partly, I wanted her to take on the rest of the HRT on the NHS at the same time which she did so there was an element of picking my battles.
Another time I would remind her that the NICE guidelines don't say there needs to be an initial blood test and there is no accepted range. They say that T can be prescribed for lack of libido with no additional hurdle.
The difficulty is that it is off licence so it's difficult to demand it.
I resolved it by getting T prescribed privately and I then got another GP at the practice to take it on under the NHS.
Good luck x
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Even with Newson prescribing my T already, my GP wouldn't take it on.
I just get a 'computer says no' response blanket-wise with testosterone.
But I can't complain because she has approved me having only utrogestan (not gepretix) after I said I had some breakthrough bleeding on gepretix and she is also prescribing the 3x higher than the licensed dose of E which I need and which Newson prescribed. So she is cooperating. Just with testosterone, she won't/can't.
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Would a trans woman or man be refused 'T" :-\
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Even with Newson prescribing my T already, my GP wouldn't take it on.
I just get a 'computer says no' response blanket-wise with testosterone.
But I can't complain because she has approved me having only utrogestan (not gepretix) after I said I had some breakthrough bleeding on gepretix and she is also prescribing the 3x higher than the licensed dose of E which I need and which Newson prescribed. So she is cooperating. Just with testosterone, she won't/can't.
I got lucky in that I then found a really good GP at our practice who listens and understands that I know quire a lot about my own conditions. She's really refreshing.
I didn't fight the battle with the first GP as I wanted the Oestrogen and P taken on and she agreed that so T wasn't a battle to fight at that time.
It shouldn't be like this ithere ought to be clarity and consistency and it frustrates me that there isn't.
I'm lucky, I can pay up go private, but good health and quality of life shouldn't have to be paid for . Rather than the establishment attacking LN they should take a look at themselves and the poor and sometimes negligent care that many woman receive from GP's.
Rant over :)
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Hello ladies.
I just wanted to say that when I was with Newson Health they would only prescribe testosterone when my oestrogen had reached a certain level. I was very post meno so this may have been a factor. As soon as my oestrogen was acceptable they prescribed Androfeme testosterone cream.
I am now seeing a nurse practitioner at my GP surgery, I haven't asked for testosterone and it hasn't been suggested to me.
Wishing you all well ladies.
K.
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Just to say that wasn't my experience at Newson this year. I didn't need Oestrogen levels to be taken. I did have a T level because the GP had tested it but I don't believe that is required. I do need a test at 3 months to continue T.
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Just to say that wasn't my experience at Newson this year. I didn't need Oestrogen levels to be taken. I did have a T level because the GP had tested it but I don't believe that is required. I do need a test at 3 months to continue T.
Would the NHS not give you T?
Thank you.
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Just to say that wasn't my experience at Newson this year. I didn't need Oestrogen levels to be taken. I did have a T level because the GP had tested it but I don't believe that is required. I do need a test at 3 months to continue T.
Hello :)
Would the NHS not give you T?
If not, why not?
I ask, as the NHS are doing a T blood test this coming Friday for me, and GP will prescribe if my levels are low enough, but I understand private clinics idea of low testosterone is a higher figure, and if so, private might still be on the table for me.
Thank you.
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Just to say that wasn't my experience at Newson this year. I didn't need Oestrogen levels to be taken. I did have a T level because the GP had tested it but I don't believe that is required. I do need a test at 3 months to continue T.
Hello :)
Would the NHS not give you T?
If not, why not?
I ask, as the NHS are doing a T blood test this coming Friday for me, and GP will prescribe if my levels are low enough, but I understand private clinics idea of low testosterone is a higher figure, and if so, private might still be on the table for me.
Thank you.
Yes, exactly as your final sentence. GP did test but used lab ref range that started at 0.01 so my 0.8 was perfectly fine according to GP
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Just to say that wasn't my experience at Newson this year. I didn't need Oestrogen levels to be taken. I did have a T level because the GP had tested it but I don't believe that is required. I do need a test at 3 months to continue T.
Hello :)
Would the NHS not give you T?
If not, why not?
I ask, as the NHS are doing a T blood test this coming Friday for me, and GP will prescribe if my levels are low enough, but I understand private clinics idea of low testosterone is a higher figure, and if so, private might still be on the table for me.
Thank you.
Yes, exactly as your final sentence. GP did test but used lab ref range that started at 0.01 so my 0.8 was perfectly fine according to GP
I'm really sorry to hear that the NHS would allow you to suffer the symptoms of low testosterone, given T can be so beneficial in many ways.
Do you mind me asking if you are peri or post meno?
I ask because, while this is no excuse to deprive you of testosterone, I wonder if my levels might be lower as I am post meno, if T levels are higher in peri, that is.
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Hi Dandelion. I'm peri. I think my GP's view was that anything in range so over 0.1 was OK!
I've been taking T for 5 weeks, I'm a bit complicated as I've got other issues going on (likely thyroid disorder and a problematic progesterone reaction) so I don't feel as well a I first did on HRT. But.... tentatively I think I might be feeling a bit better 🤞
I hope you get a good response from your GP
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Hi Dandelion. I'm peri. I think my GP's view was that anything in range so over 0.1 was OK!
I've been taking T for 5 weeks, I'm a bit complicated as I've got other issues going on (likely thyroid disorder and a problematic progesterone reaction) so I don't feel as well a I first did on HRT. But.... tentatively I think I might be feeling a bit better 🤞
I hope you get a good response from your GP
Hello and thank you for your reply.
I wish you all the best on your journey.
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A bit late to the thread, however, I finally had a chance to watch the youtube video from Paula Rastrick who appears in the Panorama programme. I found it interesting to get more background about the programme, so thought I'd share it:
https://www.youtube.com/watch?v=b8ruGzcc7NM&t=1s
I think Louise N has done an amazing job of making the discussion around menopause more mainstream and she does provide very accessible information (I regularly checkout her posts on youtube). I personally feel that there is a case for treating women outside of the guidance, however, I also feel that this means they should be monitored more closely, and when not commercially sensitive or breaching patient confidentiallity, for more information to be shared about how this cohort of women resond to higher doses. The health issues experienced by the women featured in the programme (both pre and post any MHT they received) must be devasting.
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'There is no evidence for...' does NOT mean 'we have done the research/studies/testing and proved it is wrong'. It just mean it hasn't been properly tested according to medical protocols. The biochemists may have proved it but that is not enough for doctors. I started supplementing with Vitamin D in 2009 after having cancer through looking at the biochem research and now it is mainstream. No recurrence and glad I didn't wait. Same principle applies here with HRT.
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Also researchers will leave out anything that might be negative to proving their cause!
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And there is zero money in natural/body identical hormones because they are not patent-able drugs which can make big pharma loads of money - so there is no incentive for the research ever to be carried out. Who wants to wait for a bus which never comes, in the pouring rain?
And yes, it must be devastating for the women who developed health problems as a result of unbalanced hormones - but it is equally devastating for the billions of women who fail to receive high enough doses of estrogen on the NHS to adequately treat their symptoms. If I were on the NHS and didn't have access to the Newson Clinic, I would be shaking through the night, all night, jerking awake every time I begin to fall asleep and have my heart racing hard and fast all night.
No one would care about that, though - because it would be due to a withholding of care/medication, rather than through the application of medication. No heads would roll. Because we can't blame doctors for all the suffering which results because they are NOT prescribing something, can we? We can only find the minority of people who have suffered because they HAVE been prescribed something and then target those doctors.
'Do no harm' applies to refusing to prescribe and not just to prescribing. And there are so many women being HARMED through inadequate estradiol levels. Women who think they are fully protected against osteoporosis and then fall and fracture their pelvis and realise their estrogen levels are tiny. Women with cardiovascular disease and dementia, who wouldn't have these diseases if they had been able to absorb enough HRT from the max licensed dose - which they thought was protecting them.
So much harm being done, every day... from doctors who under-medicate, under-prescribe and under-treat. Far more than the very very few women they could rustle up who've been (arguably) over-treated.
Where's the TV programme about that, then?
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And there is zero money in natural/body identical hormones because they are not patent-able drugs which can make big pharma loads of money - so there is no incentive for the research ever to be carried out. Who wants to wait for a bus which never comes, in the pouring rain?
And yes, it must be devastating for the women who developed health problems as a result of unbalanced hormones - but it is equally devastating for the billions of women who fail to receive high enough doses of estrogen on the NHS to adequately treat their symptoms. If I were on the NHS and didn't have access to the Newson Clinic, I would be shaking through the night, all night, jerking awake every time I begin to fall asleep and have my heart racing hard and fast all night.
No one would care about that, though - because it would be due to a withholding of care/medication, rather than through the application of medication. No heads would roll. Because we can't blame doctors for all the suffering which results because they are NOT prescribing something, can we? We can only find the minority of people who have suffered because they HAVE been prescribed something and then target those doctors.
'Do no harm' applies to refusing to prescribe and not just to prescribing. And there are so many women being HARMED through inadequate estradiol levels. Women who think they are fully protected against osteoporosis and then fall and fracture their pelvis and realise their estrogen levels are tiny. Women with cardiovascular disease and dementia, who wouldn't have these diseases if they had been able to absorb enough HRT from the max licensed dose - which they thought was protecting them.
So much harm being done, every day... from doctors who under-medicate, under-prescribe and under-treat. Far more than the very very few women they could rustle up who've been (arguably) over-treated.
Where's the TV programme about that, then?
I agree and also there is little opportunity to prescribe further drugs with HRT . Loads of long term medications that are prescribed cause many side effects, and make people sicker in the long run and there is the commercial opportunity to dish out more drugs - these pharmaceutical companies are BIG business and not in it for the wonderful feeling they get making people better ! It is about risk and benefit and what doctors don't tell you about is the risk to benefit ration of many drugs. Also gender equality plays a part - HRT is for women, if it were for men it would be a different story.
PMxx
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I must say I have never understood the zero tolerance attitude to compounded/bespoke HRT. I was certainly given a hard time on my compounded hormones thread in the Alternative Therapies section. This is very strange considering the monitoring offered by the prescribing clinics is far superior to anything the NHS offers which seems to be virtually non existent and most women have never even had a uterine scan.
I think there are two reasons why the NHS are wedded to low dose oestrogen. Firstly, they still seem terrified of those wretched and now discredited studies from 20 years ago and secondly, they keep overloading women with high doses progesterone while not giving them enough oestrogen. This is because they are obsessed with endometrial hyperplasia but at the same time they refuse to properly monitor people. Most women could probably take a higher dose of oestrogen and a lower dose of progesterone but they are prohibited from finding out via TVS scans. This results in low HRT compliance and poor symptom control.
It's a nonsense and no wonder so many women seek help privately from specialists like Louise Newson.
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Totally, good points Mary.
The thing is, the NHS cannot manage the demand already for health services. If they gave everyone adequate estrogen and not tons of progesterone unnecessarily, they would (as you say) need to offer regular ultrasounds to monitor things. They just cannot provide this, the system would collapse. (Is already collapsing.) So instead they underprescribe E and overprescribe P and hope that will do the trick... so insane.
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I actually think that if the whole picture were considered it would make economic sense to offer an annual well woman pelvic ultrasound.
This would prevent the suspected cancer pathway from being clogged up with everyone who has had a bit of spotting, and would remove the issue of many women having to be overtreated with progestogens in order to prevent a minority developing endometrial hyperplasia.
If it permitted more physiological dosing of estrogen rather than the palliative microdosing that is designed to stop women complaining of hot flushes, nothing more, there would also be far fewer cases of osteoporosis and premature cardiovascular disease down the line, as well as less prescriptions for painkillers, psychoactive medication, incontinence treatment etc...
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We should be encouraging our young people to exercise regularly, get off the vapes and eat plenty of dairy!
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I'm with you there, bombshell. Annual well-woman exam with ultrasound and smear, maybe mammograms or breast u/s too - all at a centre which just does this, for women.
It would exist, if it were about men's health.
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And there is zero money in natural/body identical hormones because they are not patent-able drugs which can make big pharma loads of money - so there is no incentive for the research ever to be carried out. Who wants to wait for a bus which never comes, in the pouring rain?
And yes, it must be devastating for the women who developed health problems as a result of unbalanced hormones - but it is equally devastating for the billions of women who fail to receive high enough doses of estrogen on the NHS to adequately treat their symptoms. If I were on the NHS and didn't have access to the Newson Clinic, I would be shaking through the night, all night, jerking awake every time I begin to fall asleep and have my heart racing hard and fast all night.
No one would care about that, though - because it would be due to a withholding of care/medication, rather than through the application of medication. No heads would roll. Because we can't blame doctors for all the suffering which results because they are NOT prescribing something, can we? We can only find the minority of people who have suffered because they HAVE been prescribed something and then target those doctors.
'Do no harm' applies to refusing to prescribe and not just to prescribing. And there are so many women being HARMED through inadequate estradiol levels. Women who think they are fully protected against osteoporosis and then fall and fracture their pelvis and realise their estrogen levels are tiny. Women with cardiovascular disease and dementia, who wouldn't have these diseases if they had been able to absorb enough HRT from the max licensed dose - which they thought was protecting them.
So much harm being done, every day... from doctors who under-medicate, under-prescribe and under-treat. Far more than the very very few women they could rustle up who've been (arguably) over-treated.
Where's the TV programme about that, then?
There is zero money in natural/body identical hormones and big pharma are not interested.
They can make loads of money in the drugs they give to women who have gone on to develop menopausal related illness, arthritis, fibromyalgia, psych symptoms, insomnia, bone loss drugs, IBS drugs, and the list goes on.
I like your bus in the pouring rain analogy.
I like how Dr Newson says clinical evidence is important, as in, the droves of women she and her medics come across on a day to day basis. I think she might get data from that app she has, called "balance".
The panorama programme puzzled me as one lady who got cancer had her womb removed already.
There seemed a small group over years.
I agree, it is devastating for the billions of women who fail to receive high enough doses of estrogen on the NHS to adequately treat their symptoms.
I did not know some women just did not absorb oestrogen.
Oestrogen wise, in peri, 100mg sorted me out.
Your symptoms of shaking through the night, all night, jerking awake every time you begin to fall asleep and heart racing hard and fast all night, sound dreadful.
I understand Newson Health likes to pass patients back to the NHS, "WITH" the hormones they need, and say no one should have to go private for the hormones they deserve, that they lost, the absence of which not only cause symptoms, but those symptoms can mess your day up, insomnia etc, and also, for asymptomatic women, they are still missing hormones they lost and are at risk of future diseases which would be prevented if women were given what they need.
I began to resent my needs, still needing a fan by the bed this time of year, messy toilet visit on a morning with wiping and washing (sorry for TMI) and buried my head about possibly needing testosterone, as I had come against push-back when asking for oestrogen and progesterone back in 2014.
The NHS computer crunched the numbers in my testosterone blood test and said "No further action", yet the Newson Health doctor asked for my results and explained why I was feeling the way I was, as insufficient testosterone is available in my body.
Newson Health are better as they go on symptoms not bloods.
As for oestrogen you need whatever you need. The NHS are happy to increase mine if I need up to 100mcg.
Dr Newson thinks it is unethical to wait for women to suffer before prescribing and I tend to agree with her.
Depressingly, I watched a video of hers which made total sense, but it was four years old and we are no further forward.
We can't blame doctors for all the suffering which results because they are uneducated and untrained.
I do think the programme was a smear campaign against Dr Newson, but then again, we do smear revolutionaries don't we, look at Galileo and Pasteur to name just two.
I agree 'Do no harm' applies to refusing to prescribe and not just to prescribing.
Women are being HARMED through inadequate estradiol levels, as I said above, the symptoms themselves can cause harm. Lack of sleep, moods affecting others etc.
Lack of education is to blame, and whatever reason we and the Drs are uneducated for.
Dr Newson is trying to help womankind, and humanity, really, but mainstream establishments will never like this. I see her as a shining star. I love how she educated me with her FREE content.
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And there is zero money in natural/body identical hormones because they are not patent-able drugs which can make big pharma loads of money - so there is no incentive for the research ever to be carried out. Who wants to wait for a bus which never comes, in the pouring rain?
And yes, it must be devastating for the women who developed health problems as a result of unbalanced hormones - but it is equally devastating for the billions of women who fail to receive high enough doses of estrogen on the NHS to adequately treat their symptoms. If I were on the NHS and didn't have access to the Newson Clinic, I would be shaking through the night, all night, jerking awake every time I begin to fall asleep and have my heart racing hard and fast all night.
No one would care about that, though - because it would be due to a withholding of care/medication, rather than through the application of medication. No heads would roll. Because we can't blame doctors for all the suffering which results because they are NOT prescribing something, can we? We can only find the minority of people who have suffered because they HAVE been prescribed something and then target those doctors.
'Do no harm' applies to refusing to prescribe and not just to prescribing. And there are so many women being HARMED through inadequate estradiol levels. Women who think they are fully protected against osteoporosis and then fall and fracture their pelvis and realise their estrogen levels are tiny. Women with cardiovascular disease and dementia, who wouldn't have these diseases if they had been able to absorb enough HRT from the max licensed dose - which they thought was protecting them.
So much harm being done, every day... from doctors who under-medicate, under-prescribe and under-treat. Far more than the very very few women they could rustle up who've been (arguably) over-treated.
Where's the TV programme about that, then?
I agree and also there is little opportunity to prescribe further drugs with HRT . Loads of long term medications that are prescribed cause many side effects, and make people sicker in the long run and there is the commercial opportunity to dish out more drugs - these pharmaceutical companies are BIG business and not in it for the wonderful feeling they get making people better ! It is about risk and benefit and what doctors don't tell you about is the risk to benefit ration of many drugs. Also gender equality plays a part - HRT is for women, if it were for men it would be a different story.
PMxx
It is sinister when you think about it.
Manipulation of information and miseducation and misogyny.
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I must say I have never understood the zero tolerance attitude to compounded/bespoke HRT. I was certainly given a hard time on my compounded hormones thread in the Alternative Therapies section. This is very strange considering the monitoring offered by the prescribing clinics is far superior to anything the NHS offers which seems to be virtually non existent and most women have never even had a uterine scan.
I think there are two reasons why the NHS are wedded to low dose oestrogen. Firstly, they still seem terrified of those wretched and now discredited studies from 20 years ago and secondly, they keep overloading women with high doses progesterone while not giving them enough oestrogen. This is because they are obsessed with endometrial hyperplasia but at the same time they refuse to properly monitor people. Most women could probably take a higher dose of oestrogen and a lower dose of progesterone but they are prohibited from finding out via TVS scans. This results in low HRT compliance and poor symptom control.
It's a nonsense and no wonder so many women seek help privately from specialists like Louise Newson.
Dr Louise Newson said women should not have to go private.
She said it upsets her to see so many women coming to her clinic.
She likes to pass them back to the NHS, with the needed hormones of course.
I had to to Newson online, as the computer said "No!" with the NHS regarding my testosterone blood test results.
The Newson Angel Dr who I had a virtual with, explained why I am getting symptoms still, from my testosterone blood tests, in a way that I could really understand as I am autistic.
It is my aim to ask the Newson Angel doctor to pass me back to the NHS once I am balanced.
I go for a follow-up in March and will get bloods done again, I am 58 so no fluctuations.