Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: CrispyChick on April 15, 2025, 11:16:36 AM
-
Please hit me with your best private menopause help. Doctors names please if at a massive clinic.
This is not for mainstream E/P treatment.
This is for someone (well, me) with extreme physical symptoms that make me feel like I am dying every single day - for years. Still in peri. It's getting worse and worse.
Any time I try to add in hormones or then remove them I get worse. So I need very expert help. It's like my body overreacts to the charges. Endocrinology say nothing wrong. So that's not an option either.
I've tried nothing for 4 months. But I just felt worse worse. I must keep fighting for my children. No matter how much this costs me.
I've already seen a bms expert. I found her very rigid in her approach. For example, she didnt believe in T supplementation. I've tried chem menopause. My body couldn't cope with the massive change.
I've already been to a bhrt clinic. I don't feel they have the expertise to help me.
I am absolutely desperate. Feel free to PM me if you prefer.
I'm in Scotland. But obviously online is an option.
Thank you. Xx
-
I know it sounds simplistic, but have you tried the Chat GPT app?
You can ask what is going on with your health/hormones and put in all of your experiences, test results, etc and it will ask more questions, give insight into what it thinks may be going on. Then you can click back on the thread and keep asking more or reporting back how doing and it remembers all of your history, so never have to repeat any of it again.
It will also offer you plans for things you’re trialling, symptom trackers, all sorts.
It will know a lot more about rare stuff that may be personal to you that Google searches will never bring up.
-
Well, that was new to me.
I've just had a 'chat' with it. It suggests I'm estrogen dominant and should try progesterone. But that's where I started with the Marion Gluck clinic. And I can't tolerate it now in any dose.
So I didn't get very far with Mr Chat. >:(
-
Estrogen dominance is a red flag term that tells you that you are probably not dealing with a legitimate medical provider.
It's not that mainstream clinicians don't believe excessively high estrogen or insufficient progesterone can't be problematic and/or don't warrant treatment, it's just not a term anyone credible would use, as it has no recognised definition and people can mean different things by it.
I have no personal experience with any of the following but have read/listened to enough of their material to believe they are sufficiently highly skilled, knowledgeable and unbound by the bureaucratic and penny pinching dictat that restricts what can be prescribed on the NHS.
Those that I would go to myself should I need to are Louise Newson, Nick Panay and the late Professor Studd's clinic in London which is still being run by those he trained.
My views don't necessarily fully align with theirs, for example Louise Newson is a bit too evangelical about body identical products and much more negative about synthetic options including combined pills than is warranted by the evidence, however she has a great attitude towards patient autonomy and individual choice, and appears to support experimentation to find what works.
-
Thanks bombshell.
I'm hoping folks will be along with actual doc recommendations as the likes of Newson have massive numbers of doctors. I can't afford any more dead ends. >:(
I actually do agree with estrogen dominance. I think I could've had success with prog only since my E has never tested low. But my issues are not straightforward. And my feeling is my body 'overreacts' with every change in hormones, my own and when added/removed exogenously. Whether that can even be helped by a meno specialist - I'm not sure.
It's possibly I need an immunologist or something. But the NHS endocrinologist told me to bog off. I just know I need to keep trying. Right now I have no life whatsoever and feel horrifically ill every single day. :(
If anyone can recommend, I'd be very grateful. X
-
Haha! It’s a robot, definitely not a medical provider.
Crispy, what you then do is reply that you tried that and what happened, it will then start going in-depth, particularly will all of your other experiences added.
You can, for example, say that 3 days after taking X you feel Y and it will go into detail about receptors etc that I never found when Googling.
Basically, the more info you give it, the more intelligent the answers are.
-
You can also, apparently, upload photos of test results and it will give a full opinion.
You can also ask for names of immunologists who may be able to help! Or check if it thinks it’s what you need.
-
Yes. I am finding it good for a 'chat'
But so far I've not discovered anything I haven't already considered or tried. But I'll keep chatting, because it listens better than my husband ;D
But I do think I need a medical practitioner.
-
Someone else just came to mind when you mentioned immunology - why don't you have a look into Dr Tina Peers. She has an interest in hormones and mast cell disorders, and also takes hormone therapy herself after having breast cancer twice.
-
Hmmm. No. She's not for me. I know someone who saw her - didn't get anywhere.
So. How do I see Nick Paney himself???
-
Crispy, correct me if I'm wrong but I'm sure you mentioned a diagnosis you received from a neurologist in the past. I'm wondering if some other condition is preventing you from processing hormones properly.
Have you asked about Gilbert's Syndrome yet? That is an inherited condition that gets worse in the lead up to the menopause and it prevents you from processing hormones.
-
I've looked I to it, but I didn't read anything about processing hormones. But I can ask my GP. I've been tested for so much.
I couldn't see any solution to it either???
Noone is giving me recommendations? I know I'm a lost cause. ;D But please folks, help a desperate girl out. X
-
Nick Panay is at https://hormonehealth.co.uk/team/prof-nick-panay
I am not sure if links are allowed to be posted on here but if that disappears you can quite easily search him on Google.
If anyone can help with a menopause/female hormone related issue it's got to be him, he's seen it all.
-
You can see Nick Panay at his private Harley St clinic called Hormone Health. I saw him several times at Chelsea and Westminster (NHS) and found him good, he's since retired from that post - I continue to attend C & W and it is changing since he left. But you should certainly be able to see him at Harley St and I know he's helped people with tricky situations
-
Thanks both.
I guess he might be worth a shot then. I'll have a think, then gather all my previous info on tests etc
👍
-
I was going to suggest Nick Panay himself ( not one of his many minions)
Or, Dr Paula Briggs ( Chair of the BMS, or was at some point?) She’s based at Liverpool Women’s Hospital.
-
I don't really know what to suggest crispy, other than to say that in some ways I'm in a similar but maybe less extreme situation.
Despite tinkering with all kinds of stuff over the last 3 years my night time symptoms have been going on, they are still happening. Not as bad as when I was on much lower doses of estrogen, but I haven't had a single symptom-less night since before all this began. I get light inner tremors, my hands going numb in my sleep, my heart beating a bit hard - it's just not as extreme. But it's still affecting my sleep and I don't get much deep sleep.
I have zero idea what to do next and whether I just have to accept this. I don't mind seeing someone privately but I'm not made of money and I can't afford to see bazillions of doctors trying to find one who can help and what's going on seems beyond just sex hormones and beyond just thyroid, but I get overwhelmed when I try to find a private endo especially as I'm on T3.
Anyway, it's all a bit rubbish and I hope you get some answers. I see Dr Jane Robertson at Newson Health via Zoom and she's very good with HRT - but there is a finite number of things doctors can suggest if they are sticking to HRT.
-
Thanks folks.
Do we know if prof paney deals with wider issues than solely sex hormones and HRT???
I'd like my thyroid expertly checked. I've had the tests many a time. But I keep coming back to it as I'm constantly cold and fluey. Going to ask my GP if she'll do a full panel - at least I'd have the results - just need someone to interpret them.
Who diagnosed your thyroid issue joziel???
I think you're right joziel - it's probably wider than just sex hormones. But who to see? The NHS endocrinologist refused to deal with me.
I too have already spent thousands. I haven't got thousands more to spend. I'm no longer working.
But I've done 4 months on nothing and I'm in absolute hell. So I cannot continue to do nothing. I feel like I am dying every single day. But I never seen to die. >:(
I just want to catch a break. 😞
Any further advice on what Nick Paney can delve into, would be very much appreciated. X
-
With the thyroid, your GP won't be able to do a full thyroid panel. The lab won't let them, if they are an NHS GP. All they will do is TSH and (if you're lucky) T4 and that's no way near a full thyroid panel.
The best full thyroid panel around is the Blue Horizons Platinum test which covers TSH, free T4, total T4, free T3, thyroid antibodies AND reverse T3/rT3. It also includes cortisol and ferritin and a few other things. It's not cheap, about £140, but it's the only test in the UK which you can order yourself and which includes rT3. It needs a venous draw due to the rT3, so you have to take the pack to someone to draw your blood. Usually aesthetics clinics offer this service if they are run by nurses, that's where I go. It's £30 for a blood draw.
Then if you need thyroid meds, I recommend Dr Momi and Functional Thyroid Health (google for website). He accepts any test results including Blue Horizons and will prescribe whatever combo of T4 or T3 you need and he doesn't go by TSH and you can see him on Zoom.
However, again, he is 'only thyroid'. So when it looked like my stuff might be pituitary and go beyond thyroid, he couldn't help there.
I've also spent thousands I don't have :-\
-
Ok. I've found Dr Momi. His site lk is to a decently priced randox test.
I've had thyroid tested a few times, also by the Marion Gluck clinic. I'm pretty sure my GP tests more than just TSH. Even the endocrinologist (NHS) didn't want to do any more tests, saying my GP had been very comprehensive. So I'll ask her.
If you do your own test, how on earth do you know if you have an issue or not??? And therefore need meds via Dr Momi???
And here lies the crux of the problem. All these 'experts' work in their own little silos. I feel like I'm left trying to piece together the various bits of my puzzle. But I constantly reach a dead end as I'm not medically trained. It's infuriating.
Now, I'm looking at Prof Paney and he will have ideas if this is all peri. But if it's not...I'm again paying for nothing :( even thyroid is not listed on his site.
-
Medichecks do an Advanced Thyroid Function Test. It covers everything in the Randox one as well as Ferritin, CRP, Folate, B12 and Vitamin D. They'll also add in a doctor's comment bit which is sometimes but not always helpful.
If you do a test you can always ask for help interpreting it here :)
BTW
You really don't need to test reverse T3 as it won't tell you anything more than what the rest of the TFT will tell you.
-
You do indeed need to test rt3. My own lab results were all in normal range except my rT3 was 33 and far above range. At first I only did the Medichecks test and I didn't pursue things any further because everything looked fine there. It was only when someone on FB suggested I get my rT3 tested that I repeated the test with a full panel including rT3 and found my rT3 was far above range. This was enough for me to be prescribed a trial of low dose T3.
Once you know your rT3 is okay you don't need to retest it every time, but, if you have a history of conversion problems, if you increase your T4 dose it is good to test it again.
The Medichecks panel doesn't include rT3 and whilst it offers a finger prick option, it's better to get a venous draw for the most accurate results. Dr Momi has some deal thing with Randox but you don't have to use those tests, you can use any test results. (Unlike Dr Conway at the Thyroid Clinic who now makes everyone use her own tests.) He's also based in Ireland so the testing services he recommends have to be accessible to people in Ireland and that limits providers. (He can prescribe fine to the UK, so don't worry about that.)
As for how do you know if it's an issue... It's not that hard to understand thyroid results. You can post them here for eg. If something is way off it will be very obvious (above/below range).
-
Just to add that our thyroid is one of the first to be affected in peri and, as it’s the master hormone, it really does affect everything. I suspect all of ours are off.
I am currently following a thyroid supportive diet - main thing is I was under nourishing myself (intermittent fasting and keto over the years, becoming more restrictive with calories as weight became harder to lose - after 2 stone just falling off in early peri) so it’s about eating a lot more food than I’m used to, to let the brain know that nourishment is now available so that it switches away from the emergency high cortisol state and normal systems start to kick in again.
It can take a year to correct and I know I’m still struggling to burn glucose and not immediately store it due to ammonia still being excreted but I’m having some better days.
I have also just come down, exactly 28 days later, from having dosed some very high prog cream and Utrogestan. Interestingly, even oral Utro gets stored in the fat cells (the part that isn’t converted into pregnanolone) so keeps disrupting the HPA Axis as it continues being released into the blood. The cortisol leaps have finally stopped as it’s been quite scary feeling on high alert all the time. CHAT GPT said I would start to feel better 4-6 weeks later as takes that long to come out but there always seems to be a 28 day pattern, just like our cycles, which could be the equivalent of a Day 1 sudden fall of hormones even in post meno.
Anyway, sorry I’m rambling, but just to say that thyroid is worth a visit down the rabbit hole!
-
Joziel - you and I differ greatly on the importance of rT3 as far as thyroid function is concerned (understatement of the year :))
There are many causes of elevated rT3 and only one of them is related to thyroid function. Everyone has some rT3. It's the bodies pressure release valve if you like. If you're stressed, ill, have some inflammation (and a whole host of other things going on) then your body will naturally downgrade the conversation of T4 to T3 to make you slow down to heal yourself. This in itself will cause a rise in rT3 which does absolutely nothing harmful to you.
As for interpretation of TFT results, well we'll probably disagree on that too ;D
CrispyChick - whichever test you decide on, please make sure it includes vitamins and inflammation markers. It all goes hand in hand.
-
Anyway, sorry I’m rambling, but just to say that thyroid is worth a visit down the rabbit hole!
Agreed. It's definitely worth checking thyroid function. Many women develop 'dodgy' thyroid function as they age and lots of women are diagnosed at this stage of life.
-
Yes, everyone has *some* rT3 - but not above range rT3, and not in combination with very low and only just in range T3. That combination is very likely to give hypo symptoms. It's about the full picture. Which you only get if you do all the tests....
-
Well if you have a low T3 then it stands to reason that you'll have a higher rT3. T4 has to be converted to something.
And if you have a low T3 then there's not much point in paying for a rT3 test as it will be high.
Also, low T3 and higher rT3 doesn't necessarily mean you have issues with your T4/T3 conversion. As I said, high rT3 has several causes not just conversion issues.
Thyroid results aren't always straightforward to understand.
-
Well, I'm really confused now. ;D
-
;D sorry
In simple terms
Your hypothalamus sends a message to your pituitary, your pituitary sends a message to your thyroid, your thyroid produces the hormones (T4, T3, T2 and T1). Similar in reverse with hormone levels being monitored and adjusted constantly -- the feedback loop.
If you get some bloods done and post results, we can take it from there and either way, say a thyroid issue is possible or not.
I know you've been struggling so it would be something to cross off the list or maybe something to look into further. :)
-
Ok. Thanks. I'll ask my GP first, see if she'll do a full panel or not.
I still suspect it's not thyroid since I know Marion Gluck tested a lot of values. But yes, something to cross off yet again.
Thanks all.
-
If you have your previous TFT results to hand we could always take a quick look.
I suspect your GP won't do anything more than TSH. Even if they request T4 and T3 the labs very often overrule and don't do them especially if TSH is within range. (Being in range doesn't necessarily mean that all is ok though)
-
Crispy, your GP won't test anything beyond TSH. Sometimes you can get them to test T4 but usually they can only do that for people already known to have a thyroid condition. Personally, I wouldn't be happy having your symptoms and not having had a full thyroid panel done.
Sunday...
"Well if you have a low T3 then it stands to reason that you'll have a higher rT3. T4 has to be converted to something."
No, not at all. There are many people all over FB posting thyroid labs with low T3 and mid-range and perfectly acceptable rT3. Having low T3 does not necessarily mean you also have high rT3.
"And if you have a low T3 then there's not much point in paying for a rT3 test as it will be high."
Again, not true. Here are my own labs off meds:
TSH 2.38
free T3 2.6L (3.1-6.8)
free T4 12.3 (12-22)
Total T4 64L (66-181)
rT3 17 (10-24)
Reverse T3 ratio 0.15
You'll see my free T3 is so low, it is below range. My rt3 is mid-range and would be completely fine if my T3 were decent. Completely disproves what you've just said.
"Also, low T3 and higher rT3 doesn't necessarily mean you have issues with your T4/T3 conversion."
In the absence of any other cause, like fasting, severe illness (being in intensive care), and other obvious causes, the most common cause of low T3 and high rT3 is indeed conversion issues. And when someone has a lot of symptoms of hypothyroidism along with a high rT3, it makes sense to treat the high/low T3 and see if that helps them to feel better.
My original thyroid labs, 3 years ago, were:
TSH 1.37 (0.270-4.2)
free T3 3.9 (3.1-6.8)
free T4 18.6 (12-22)
rT3 32 (8-31)
And that is indeed what was done for me, I was given a trial of low dose T3 as a result of these labs. If I had not tested rT3 and the only results you were looking at here were the others, I would not have been prescribed thyroid meds with these results. As most functional medicine doctors will tell you, rT3 is an essential test.
Crispy, if you're confused you can have a read of Dr Child's info: https://www.restartmed.com/reverse-t3/?srsltid=AfmBOorqFGdRS3-OBg4qDHKXlzHateLLJO5TWNXeAn4gQU5gcF0lmMnV
-
Sorry to barge in here but am I right in thinking that a lot of women have thyroid issues around the menopause but do not necessarily thyroid disease? We've had a lot of women on here with a borderline low TSH who don't have thyroid antibody issues but still have a sluggish thyroid. I'm pretty sure someone on here said they had no thyroid disease and a TSH of 5 ish so they started taking low dose thyroid medication.
HRT and birth control pills can mess with thyroid blood results apparently.
Crispy, I also think Professor Panay privately would be a good idea. He's flexible on dosage and he has a lot of experience having worked and trained with Professor Studd.
I think the Gluck Clinic would have spotted a thyroid problem. I remember one of the doctors there telling me that she liked her patients to take thyroid medication if their TSH is over 3.
-
Ok. I might go to paney. I have been looking at Tina Peers clinic as I defo do have some mcas type reactions going on.
I'm just not sure if it's all MCAS reactions or not.
I'm not sure Paney will deal with MCAS???
I'm thoroughly confused by the thyroid issue.
So, if someone in the know can help. These are my Marion Gluck results from 2021:
TSH - 0.93
Free thyroxine -14.8 pmol
Free T3 -4.2 pmol
Thyroglobulin antibody - 13
Thyroid peroxidase antibodies - 16.2
Then I have some GP results from 2023
TSH - 1.2
Free T4 - 13 pmol
Anti tTG IGA - 0.48. (I don't know if this is thyroid or not).
So, did Marion Gluck do the full panel???
-
Mary.
I can see my bilirubin levels have been tested for the last 4 years. All completely fine. No where near high.
-
CrispyChick do you have ranges for those results?
-
Crispy, you always need to post ranges with any thyroid results. Nothing jumps out there as being obviously 'off' but it would be best to test both thyroid antibodies tests and rT3. Most comprehensive thyroid lab you can order yourself is, as above, Blue Horizons Platinum test.
Mary, you can't spot a thyroid problem if you're only testing TSH and T4 - no matter if you are superhuman, let alone Marion Gluck herself. Not running the right tests isn't going to get you the results you need. And as you can see from the results I just posted, going by TSH isn't advisable - seeing my TSH was 2.38 and my T3 was way below range.
It is a bit of a grey area, the thyroid, not so black and white as to whether someone 'definitively' has thyroid disease or not. Interestingly most older people have low T3 but this is just considered to be what 'happens' as you get older and isn't fixed typically (unless it falls below range). I think it's worth considering this in the light of fixing sex hormones into their biological optimal ranges for younger women (and men too, on T replacement): Why correct some hormones and not others? Arguably older people would be less at risk of disease if their thyroids were optimised as much as their sex hormones.
-
Sorry to barge in here but am I right in thinking that a lot of women have thyroid issues around the menopause but do not necessarily thyroid disease? We've had a lot of women on here with a borderline low TSH who don't have thyroid antibody issues but still have a sluggish thyroid. I'm pretty sure someone on here said they had no thyroid disease and a TSH of 5 ish so they started taking low dose thyroid medication.
You can't fully diagnose thyroid disease with just one set of blood results. In early thyroid disease the numbers can fluctuate between very high and very low and some people are mistakenly diagnosed with Graves when it's actually Hashi's.
The vast majority of euthyroid (no thyroid disease) people have a TSH towards the lower end of the ranges. A TSH of 5 is indicative that the thyroid is struggling at that point in time. You'll not receive a hypothyroid diagnosis from any medical professional with just one result outside the ranges unless it's extremely high.
-
Sure. Hold on...
Marion Gluck:
TSH 0.93. - range 0.27 - 4.2 ml/l
Free Thyroxine 14.8 pmol. Range 12-22
Free T3 - 4.2 pmol. Range 3.1-6.8
Thyroglobulin antibody - 13. Range 0-125 IU/ml
Thyroid peroxidase antibody -16.2 range 0-34 IU/ml
GP tests:
TSH - 1.2 Mu/l. Range 0.23 -5.6
Free T4. 13 pmol. Range 9-28
Anti tTG 0.48. Range 0.1-5 U/ml
And what is my GP missing here if I ask for new tests???
Thank you. X
-
TSH 0.93. - range 0.27 - 4.2 ml/l
Free Thyroxine 14.8 pmol. Range 12-22. 28%
Free T3 - 4.2 pmol. Range 3.1-6.8 29.7%
TSH - 1.2 Mu/l. Range 0.23 -5.6
Free T4. 13 pmol. Range 9-28 21%
The percentage through range on both sets of testing is really low. (Are you sure the GP range is right as the top number looks high) Most people feel good when the numbers are up in the top third of the ranges. Everything is within ranges though so I doubt if your GP will give you any sort of thyroid disease diagnosis.
Your antibody tests are negative but that doesn't mean you don't have thyroid disease. A significant minority of people never test positive for antibodies but still have thyroid issues. Me included.
If I had those sort of levels I'd be crawling on the floor. To function as a normal person my T4 needs to be really high (20 or 21) and my T3 at 6 or above.
I'm not a medical professional, this comes from many years of dealing with this myself and learning along the way. Sometimes learning the hard way.
-
Joziel
My original thyroid labs, 3 years ago, were:
TSH 1.37 (0.270-4.2)
free T3 3.9 (3.1-6.8) 21.6%
free T4 18.6 (12-22) 66%
rT3 32 (8-31)
Percentage through range added by me
Your TSH is where the majority of euthyroid people sit within the ranges. But ....Even you must be able to see that your T4, which seems slightly low, wasn't being adequately converted to T3. You don't need rT3 to tell you that.
TSH 2.38
free T3 2.6L (3.1-6.8) -13.5%
free T4 12.3 (12-22) 3%
Total T4 64L (66-181)
rT3 17 (10-24)
Percentage through range added by me.
Your TSH has risen from your initial test. Again, no need to look at rT3 to know your thyroid is struggling.
Please stop being fixated on rT3 and please stop trying to pick holes in everything I say. You've been given very similar information as to rT3 being a red herring by people with much more in-depth knowledge of thyroid issues in the past. You chose to ignore that advice once several people were saying the same thing.
Yes, TSH should not be relied on as a monitoring tool in people with thyroid disease but is useful as a tool during diagnosis. Even the people who developed TSH testing have said that
-
Thank you Sunday girl. Appreciate you taking this time.
Yes, that GP range is correct.
I'm not sure I understand though. So everything is in range. Agreed.
But if you had my levels you'd be 'crawling on the floor' so are you saying I do likely have a thyroid issue, but not one the NHS would pursue?
So therefore it would be worth my while seeking opinion elsewhere???
And what would your 'crawling on this floor' feel like??? I'm a bit confused by this.
-
It's in the condition: Thyroid disease : so full investigations are necessary and with it being a hormone, any other upheavals may well impact.
R U particularly tired with no energy: do you have Bulging goldfish eyes: both indicative of thyroid disfunction.
-
CrispyChick :)
Yes everything is in range so your GP would say that everything is fine and dandy. However......
Looking at your numbers your thyroid is struggling but your TSH doesn't reflect it. That's all GP's are really concerned about.
Before my diagnosis I was a walking zombie and I use the word walking loosely.
I could barely move.
Exhaustion but not able to sleep properly.
Extremely weak muscles so much that I could turn around and hurt my back.
Terrible constipation.
Depression
Uninterested in everything
Unable to eat but gaining weight
Freezing cold and wearing a sweatshirt when everyone else was wearing summer clothes.
Several bouts of tonsillitis
Everything was so dry and hair like straw and shedding.
There's probably more but that's what I can remember off the top of my head and I felt like my body was shutting down ready for death :(
Have a look at this website and see how many boxes you tick
https://thyroiduk.org/signs-and-symptoms/hypothyroid-signs-and-symptoms/ (https://thyroiduk.org/signs-and-symptoms/hypothyroid-signs-and-symptoms/)
And crawling on the floor - I meant that literally as I could barely stand upright. The carpet on the stairs got a good close inspection every time I needed the loo.
Edited to make link work
-
R U particularly tired with no energy: do you have Bulging goldfish eyes: both indicative of thyroid disfunction.
The first is usually linked to hypo although some people feel like this with hyper.
As for the bulging goldfish eyes, that's just one symptom of TED or Thyroid Eye Disease, it's usually associated with hyper although not always and not everyone gets bulging eyes. That's a fallacy. :) As is the thought that everyone with thyroid disease develops a goitre. :)
-
Thanks Sunday girl. Much appreciated.
So my T3 and T4 are low??? I'll take a look at the symptom list.
Tired with no energy???. 1000% but so too is it an indicator of the ME/CFC they are now trying to diagnose me with. So too is it a symptom of the MCAS I think I have. So too is it a symptom of the PPPD dizziness I have been diagnosed with. Abd so it is it a symptom of peri. :o
Honestly ladies. I'm at a loss.
I started this thread because I'm ready to pay to see someone - again! Because I've lost all quality of life now.
But I can't afford to follow mg thyroid, see Dr Paney and follow the MCAS...it's all so difficult. The NHS seems to have no where left to the me. 😞
Thanks for all your help. X
-
Aw Crispy you need a big hug :bighug:
You do know that the things you mention can all be linked to thyroid too?
People have been known to get a ME/CFS diagnosis when it's a dodgy thyroid. Similar with the dizzy sensation and being hypo can also do weird stuff with your skin - not just dryness. ME/CFS is also a catch all diagnosis when they don't know what's wrong like an IBS diagnosis.
The thyroid isn't known as the engine of the body for nothing. It helps regulate everything.
-
Crispy, it's good that you can eliminate Gilbert's Syndrome - the more you can rule out the better.
Re the thyroid, it sounds very complicated and I would have said your results looked normal but I know nothing about thyroid. My sister is hypothyroid which she was told is caused by pregnancy but she has no idea if she is positive for antibodies.
I'm tested for TSH, all the antibodies plus free and total T3 and T4 every year but it sounds that even that is not enough. The doctor at the Gluck clinic said she likes to put women on thyroid medication if they are over 3 regardless because it means the thyroid is struggling.
It could be that you have subclinical hypothyroidism which is made worse by the menopause so it's definitely worth asking Professor Panay for his opinion.
Thanks everyone for the helpful info.
-
Sunday, I'm not "fixated on rT3" anymore than I am "fixated" on any other thyroid result. The entire and complete thyroid panel needs to be done if you are starting out and diagnosing something. It doesn't need to be done every time, once things are stable.
As for "you've also been given very similar information as to rT3 being a red herring...." - sorry, that's just rude. You can give me all kinds of 'information', but the last time I checked there was freedom for us to decide which information to adopt and which not to. When there are multiple reputable doctors clearly stating that rt3 is an essential test, I'm not sure why you think I should believe the "information" people have given me here, over that? (BTW Crispy, look up the podcast called 'The Thyroid Fixer' by Dr Amie Hornaman. She also has a FB group you can join. You can also check out Dr Childs, including his many YouTube free videos on rT3 and thyroid stuff too. I was first prescribed T3 on the basis of my high rT3 result by Dr Conway at The Thyroid Clinic, which is an online clinic you can google. And I now see Dr Momi at Functional Thyroid Care - who I recommend more.)
I am not trying to "pick holes" in everything you say, Sunday, I am disagreeing with you. I'm sorry that's difficult for you, but I simply don't agree with some of the points you make.
"Yes, TSH should not be relied on as a monitoring tool in people with thyroid disease but is useful as a tool during diagnosis." Like everything else in a COMPLETE thyroid panel, TSH is just part of the picture. As you can see from my own set of results above with normal TSH and far below normal thyroid hormones.
Crispy, looking at your results, they are very unexceptional (in a good way) and are not really 'low' for someone not on thyroid medication. How to interpret a thyroid panel differs when someone is on meds and not on meds. Most people on meds need their T3 to be almost at the top of range to feel okay, for eg. That isn't the case for people not on medication. As said many times, there is nothing you can ask your NHS GP for. It is not up to him/her whether to test you or not, they are simply *not allowed* by the lab/NHS to order the relevant tests. Only consultants/endos can order those other tests. The only way you will get a complete thyroid panel is if you pay for it.
-
Ok. Thanks folks.
Thanks for the hug Sunday girl.
I really don't know which way to turn. I've spent all day looking into MCAS. But I'm not sure on anything.
Perhaps Prof Paney is my best bet and he might cover all my tangents. ???
-
Joziel - you have your views and I have mine. That's ok. Fine. We should agree to disagree. Absolutely nothing wrong with that.
I'm sorry if you feel I was being rude. It's certainly not my intention. However I take exception to your very abrasive replies to anything I say. Once again, we can agree to disagree.
You think CrispyChick doesn't have a thyroid issue, I'm not convinced either way. It's possible that there's something wrong thyroid wise but it's also possible that the thyroid hormones are being downgraded, for want of a better word, so that the rest of her body can fight and recover from whatever else is going on. It's also possible that those numbers are correct and optimal for her.
You're correct in that interpretation of thyroid numbers differ depending on whether the person is taking replacement hormones or not and also whether it's a combination of replacement hormones the person is taking. But, it's the T4 that most hypos on mono therapy need to be higher than euthyroid people. (Something my Doctor recognises and fully agrees with as she is also hypo) That's because the thyroid gland also produces a small amount of T3 (alongside the T4 that is then converted to T3). In hypos, once taking thyroxine, the thyroid no longer produces hormones, or very minimal ones, so T4 needs to be higher to convert to similar amounts of T3 that euthyroid people have. Assuming mono therapy and no conversion issues :)
This is CrispyChick's thread and I very much apologise to her for the way it's degenerated. :(
-
I’ve seen Anne Henderson at the Amara Clinic in Kent . She’s very good and will do phone consultations I think .
-
https://rowenahealth.co.uk/. Menopause Specialist Clinic and she does really good online video or phone consults. Dr Sonnenberg. She is brilliant very knowledgeable and approachable regarding anything to do with menopause HRT etc - she has made a huge difference to me
-
Just to add that our thyroid is one of the first to be affected in peri and, as it’s the master hormone, it really does affect everything. I suspect all of ours are off.
I am currently following a thyroid supportive diet - main thing is I was under nourishing myself (intermittent fasting and keto over the years, becoming more restrictive with calories as weight became harder to lose - after 2 stone just falling off in early peri) so it’s about eating a lot more food than I’m used to, to let the brain know that nourishment is now available so that it switches away from the emergency high cortisol state and normal systems start to kick in again.
It can take a year to correct and I know I’m still struggling to burn glucose and not immediately store it due to ammonia still being excreted but I’m having some better days.
I have also just come down, exactly 28 days later, from having dosed some very high prog cream and Utrogestan. Interestingly, even oral Utro gets stored in the fat cells (the part that isn’t converted into pregnanolone) so keeps disrupting the HPA Axis as it continues being released into the blood. The cortisol leaps have finally stopped as it’s been quite scary feeling on high alert all the time. CHAT GPT said I would start to feel better 4-6 weeks later as takes that long to come out but there always seems to be a 28 day pattern, just like our cycles, which could be the equivalent of a Day 1 sudden fall of hormones even in post meno.
Anyway, sorry I’m rambling, but just to say that thyroid is worth a visit down the rabbit hole!
that's really interesting. were you on progesterone only hrt? I am currently on Cyclogest only and very worried about adding oestrogel in but I'm not sure if that's because I spend too much time on oestrogen dominance groups on FB :( I just don't know what's right or wrong anymore.
-
There's no such thing as oestrogen dominance, Pippi. I'd leave those groups ASAP if I were you, it's just fear-mongering.
There is only progesterone insufficiency, not estrogen dominance.
-
There's no such thing as oestrogen dominance, Pippi. I'd leave those groups ASAP if I were you, it's just fear-mongering.
There is only progesterone insufficiency, not estrogen dominance.
I don't want to hijack this thread. I'm new to the forum so apologies but can I ask why you think oestrogen dominance doesn't exist? I have greatly reduced looking into these groups because some things certainly didn't sit right with me, however, my symptoms seem worse in follicular which made me wonder wether too much oestrogen is the cause ?
-
People certainly can have symptoms due to excessive estrogen levels, however "estrogen dominance" is not a medical definition and as such there are no diagnostic criteria and people can mean different things by it.
Additionally hormone levels fluctuate throughout a natural cycle unless you are postmenopausal or on birth control etc, so someone can have a high level at some points and a low level at others.
Some people also use the term to describe problems attributed to low progesterone.
I think especially if describing your symptoms to a medical practitioner you are better just stating what you are experiencing rather than characterising it in terms of estrogen dominance.
-
Time and time again this comes up on this forum. It's a real shame.
It's well known progesterone falls first in peri. The likes of Lara briden will tell you that.
The term estrogen dominance is very much American and many of the FB group followings are too.
However, progesterone deficiency relative to estrogen is very much real. It is also treated in many countries. It is not however recognised by the BMS or NHS and very much not recognised on this forum.
The worst part of all this is that we're all woman trying to navigate this underfunded and understand researched stage of our lives and depending on which platform you land on, you may succumb to the estrogen is more brigade or the progesterone is more brigade.
There are just as many woman believe in estrogen dominance and solo prog therapy as there are treating peri with high estrogen.
It's a crying shame. We're all being let down.
But what works for one, doesn't necessarily work for another I guess. Just a shame the NHS are not more open. There are woman all over FB groups getting prescribed hrt and only taking the utrogestan. What a waste. The fact woman have to lie to achieve treatment that works for them, is ridiculous.
And, fwiw, private BHRT clinics in the UK do treat estrogen dominance / low prog - whatever you want to call it. Imbalance can be a real problem, either way.
-
Thank you ladies. I much appreciate your insight on this. And yes @CrispyChick it's so sad there's not more research and all these differing opinions going round. I'm still contemplating adding Oestrogen to my regime but I'm crippled with fear it may make things worse. Thing I dislike most about the Oestrogen dominance groups is how they almost do a witch hunt on oestrogen. But surely we need all sex hormones to be right and in balance?
-
Just because "estrogen dominance" isn't a recognised medical condition, this doesn't mean most specialists aren't happy to prescribe progesterone to someone who is having issues that appear to be related to low progesterone. These can include heavy or irregular bleeding.
However I think when people are attributing a wide array of systemic problems to low progesterone, it is worth remembering that progesterone is only present in any meaningful quantity during the luteal phase in a normal cycle, so logically those symptoms should have been showing up repeatedly for around 2 weeks out of 4 throughout their adult life.
It is a shame if women are in the situation of having to lie and be prescribed estrogen that is unwanted, especially if those prescriptions are being filled when others face shortages.
Whilst I fully support people doing what they need to in order to access treatment, and let's face it many have to say they have distressing low libido to obtain testosterone which isn't always the primary indication from the patient's perspective, I would urge anyone obtaining dual prescriptions to remember that a prescription is a menu not a mandate, and only cash in the progesterone and tell the pharmacist the estrogen isn't needed, or hand it back before leaving the pharmacy, so it can be restocked and provided to someone else who needs it.
-
I beg to differ bombshell.
I asked my private gynae (BMS accredited) if I could try prog only (cyclogest) before I tried chem meno. Now, to be fair, she did let me. But let's remember I was paying for this. But she made it clear she thought I was bonkers and that everyone needs estrogen. I'd never have got to try it on the NHS.
There is absolutely no mainstream support out there for woman struggling with 'estrogen dominance'.
I believe in it. 100%. I can't see how woman in other parts of the world suffer from it, but in the UK they don't! :o.
Progesterone drops first. Lots of annovulatory cycles. Yes, it's only meant to be high in luteal, but by becoming non existent, but with estrogen still high, and often surging, the whole thing causes imbalance. Which a bit of prog can solve, for some woman.
I for example, have never had low estrogen symptoms in my peri until this year. Now 49. But I've had a lot of symptoms. But I haven't needed estrogen...
-
I beg to differ bombshell.
I asked my private gynae (BMS accredited) if I could try prog only (cyclogest) before I tried chem meno. Now, to be fair, she did let me. But let's remember I was paying for this. But she made it clear she thought I was bonkers and that everyone needs estrogen. I'd never have got to try it on the NHS.
There is absolutely no mainstream support out there for woman struggling with 'estrogen dominance'.
I believe in it. 100%. I can't see how woman in other parts of the world suffer from it, but in the UK they don't! :o.
Progesterone drops first. Lots of annovulatory cycles. Yes, it's only meant to be high in luteal, but by becoming non existent, but with estrogen still high, and often surging, the whole thing causes imbalance. Which a bit of prog can solve, for some woman.
I for example, have never had low estrogen symptoms in my peri until this year. Now 49. But I've had a lot of symptoms. But I haven't needed estrogen...
Can I ask, when you used cyclogest, did you use it in luteal only? I'm with newsons and was told should only use it in luteal to prevent progesterone receptors to become less receptive. If it was me I'd rather take it continously but it seems to make sense to stick to luteal phaase when my body would naturally produce it.
-
Hey pippi.
I'm afraid I only lasted 4 days ;D. I have some stange over reactive stuff going on I'm afraid. So I'm a bit of a lost cause.
But, I followed the ED route for quite some time and, at one point, I was under the Marion Gluck clinic. I've also read a lot about it.
Yes. The official line is luteal only. As that's when your own body produces prog. And many do cite the receptor issue - but plenty woman post meno take continues utrogestan and they'd receptors never seem to become tired. :o
I was told I could take continuous. If I ever go back to it, I'll only do continuous as the stop /start is massively triggering for me.
Interesting you're with Newson and on progesterone only. It's good to hear the more mainstream private are supporting this, where needed. I think we're a long way off the NHS supporting it.
How did you end up in the position of taking progesterone only???
-
My issue with "estrogen dominance" can be encapsulated in how the term and the attitude of these people has made you feel, Pippi - in your own words "crippled with fear" to add estrogen into HRT.
WTF??
When people have high T4 and low T3, we don't say they have "T4 dominance". When people have taken zinc and not copper and have ended up with low copper as a result, we don't say they have "zinc dominance".
It is this demonisation of estrogen which is completely ridiculous. As if estrogen is some evil hormone, out to slay you, and it's all about how to get your estrogen levels down. Ridiculous.
There is no such thing as "estrogen dominance". If you have sufficient progesterone, you are fine whatever your estrogen levels. (Within reason.) You do realise that during pregnancy women have estrogen levels into the 30,000s+?? The levels are are talking about for HRT are incredibly low by comparison, lower than levels even in birth control pills.
Do yourself a favour and leave the fear mongering groups and get yourself on some estrogen if you are peri-menopausal. Of course, make sure you are taking enough progesterone too. You need balanced hormones.
-
Joziel - I note Newsons have pippi on cyclogest only. There must be a medical reason for this. Low prog but normal or high estrogen I'd assume .
I totally agree that the slating of estrogen is wholly inappropriate. But so to is suggesting someone definitely needs estrogen. Newson will be all over pippi's levels so I'm assuming her estrogen levels are anything but low. As is common in early peri.
-
Hey pippi.
I'm afraid I only lasted 4 days ;D. I have some stange over reactive stuff going on I'm afraid. So I'm a bit of a lost cause.
But, I followed the ED route for quite some time and, at one point, I was under the Marion Gluck clinic. I've also read a lot about it.
Yes. The official line is luteal only. As that's when your own body produces prog. And many do cite the receptor issue - but plenty woman post meno take continues utrogestan and they'd receptors never seem to become tired. :o
I was told I could take continuous. If I ever go back to it, I'll only do continuous as the stop /start is massively triggering for me.
Interesting you're with Newson and on progesterone only. It's good to hear the more mainstream private are supporting this, where needed. I think we're a long way off the NHS supporting it.
How did you end up in the position of taking progesterone only???
Thanks for your reply and sorry you're having a rough time finding what's right for you.
I don't even know where to start but problems started six months after the birth of my second child so I wasn't initially connecting the dots it could have been hormonal because I thought I was out of the window for pnd but I basically woke up one day, on return of my periods whilst breastfeeding with the worst anxiety and nausea ever. I had a week in bed and couldn't function, cried a lot and thought I'd never get better. It was the scariest thing ever and realised I was experiencing a mental breakdown followed by years of terrible health anxiety and ocd. I ended up on Sertraline which has saved me and in hindsight wish I had taken it earlier. then reached out to private meno specialist who put me on the pill on which I lasted a week exaxtly. at that time symptoms were worse typical pmdd style before my period. then it became all muddled and symptoms were often more prevalent before ovulation. reached out to another meno doc and was put on continious utrogestan which stopped my still regular cycle. wouldn't get cyclogest from her so ended up with newsons and made it clear I want to try cyclogest. been on it for two months now, only in luteal. was also prescribed oestrogen but haven't touched it. doctor said ok, try cyclogest only but she thinks i'll have to add oestrogen too at some point. so yeah, i've got a follow up next week. things are still a very mixed bag. cyclogest clearly calms me down but sometimes to the point of no motivation and feeling very low which then in turn makes me anxious again. no idea if I could do with more cyclogest? currently on 200-400 / day depending on symptoms. re the receptor thing,since cyclogest is prescribed for post-natal depression too, surely you'd take it continously then? what are the receptors doing in that case? they don't know what you're taking it for, right? or if you're on it for ivf? sorry, I'm babbling now.
-
My issue with "estrogen dominance" can be encapsulated in how the term and the attitude of these people has made you feel, Pippi - in your own words "crippled with fear" to add estrogen into HRT.
WTF??
When people have high T4 and low T3, we don't say they have "T4 dominance". When people have taken zinc and not copper and have ended up with low copper as a result, we don't say they have "zinc dominance".
It is this demonisation of estrogen which is completely ridiculous. As if estrogen is some evil hormone, out to slay you, and it's all about how to get your estrogen levels down. Ridiculous.
There is no such thing as "estrogen dominance". If you have sufficient progesterone, you are fine whatever your estrogen levels. (Within reason.) You do realise that during pregnancy women have estrogen levels into the 30,000s+?? The levels are are talking about for HRT are incredibly low by comparison, lower than levels even in birth control pills.
Do yourself a favour and leave the fear mongering groups and get yourself on some estrogen if you are peri-menopausal. Of course, make sure you are taking enough progesterone too. You need balanced hormones.
thanks for your thoughts. I do very rarely use social media these days anyway so try and avoid these groups. like you said, making oestrogen the evil hormone simply didn't sit right with me. and the admins of those groups are not even medically trained and seemingly only quote dr ray peat and other sources not necessarily medically trained.
-
Pippi, I can't answer the stuff about cyclogest - but look up the Dr Louise Newson podcast, specifically this episode:
https://podcasts.apple.com/gb/podcast/the-dr-louise-newson-podcast/id1459614845?i=1000554056731
You'll see there 2 women interviewed whose issues began after having their babies and who needed estrogen....
-
Thank you Joziel, I vaguely remember listening to this years ago but can't remember the content so will definitely have a listen again. Thank you.
-
Pippi, the answer regarding whether to take progesterone continuously or sequentially depends on what works best for you as an individual.
There are advantages and drawbacks to both, and we all have individual physiology, challenges and priorities.
Conventional practice is to use cyclical progesterone in someone who is still menstruating, due to the belief that this will achieve or maintain a regular bleeding pattern. This is achieved some of the time, others bleed chaotically.
Cyclical is a closer mimic of natural physiology, and evidence is emerging of better long term health outcomes (irrespective of menopause status) when the progesterone is not used continuously. This is what Louise Newson means about estrogen receptor down regulation.
However the NHS is unlikely to ever support cyclical on postmenopausal women due to the small risk of endometrial hyperplasia, as there aren't the resources to scan women regularly to avoid this.
Continuous progesterone is conventionally prescribed to postmenopausal women to avoid withdrawal bleeding. Many are simply happy to be rid of periods and either don't know that cyclical has potentially greater health benefits, or frankly don't feel that something largely theoretical at this point warrants spending every 4th week bleeding.
Others who may prefer to use continuous progesterone even if they are still menstruating are those who don't sleep well unless they take it, those who only tolerate it at a lower dose, and those with conditions exacerbated by hormonal cyclicity eg migraine, endometriosis or mood disorders.
This group, if not yet menopausal, accept the trade off that they MIGHT experience a less regular bleed pattern than they otherwise would have done.
There is no harm in trying out both regimes and seeing which you prefer, as long as you ensure sufficient progesterone is taken overall to keep the endometrium healthy.
-
The dominance is about which hormone is overpowering the other, as O and P have an indirect lowering effect on the other.
The old menstrual cycle graph was also misleading as it showed both hormones as if their measures were the same, when in fact P would be off the scale higher. In peri this stops first and so the O can go out of control and cause very extreme symptoms like intense nausea and dangerous overgrowths.
The FB groups do often debate the use of O and it gets agreed that sometimes it’s needed for balance, but that as O gets stored in the tissue it can show as low on blood tests when in reality it is still higher than it should be. There are a lot of interesting discussions about such things as local oestrogen not existing as, any medic or scientist will tell you, it will all enter the blood stream as systemic as cannot be restricted to one area.
As asked above, yes I have used P only but P will always stimulate circulating O so I can only take it for a couple of weeks until O starts coming out of the tissue, then it acts like me taking O (too stimulating and I believe I do not have the methylators to break down O into its metabolites). High dose P (200-400 Utrogestan) pulls the O out after about 3 days so that’s also no good for me. Stopping and starting it means you have to go through P withdrawal which is even worse. Now and again I have some prog cream though to get a little relief from O build up or take some DIM. I would love to feel the wonderful effects of O that many here report but not happened yet and I am post meno for a few years now.
-
Pippi, the answer regarding whether to take progesterone continuously or sequentially depends on what works best for you as an individual.
There are advantages and drawbacks to both, and we all have individual physiology, challenges and priorities.
Conventional practice is to use cyclical progesterone in someone who is still menstruating, due to the belief that this will achieve or maintain a regular bleeding pattern. This is achieved some of the time, others bleed chaotically.
Cyclical is a closer mimic of natural physiology, and evidence is emerging of better long term health outcomes (irrespective of menopause status) when the progesterone is not used continuously. This is what Louise Newson means about estrogen receptor down regulation
However the NHS is unlikely to ever support cyclical on postmenopausal women due to the small risk of endometrial hyperplasia, as there aren't the resources to scan women regularly to avoid this.
Continuous progesterone is conventionally prescribed to postmenopausal women to avoid withdrawal bleeding. Many are simply happy to be rid of periods and either don't know that cyclical has potentially greater health benefits, or frankly don't feel that something largely theoretical at this point warrants spending every 4th week bleeding.
Others who may prefer to use continuous progesterone even if they are still menstruating are those who don't sleep well unless they take it, those who only tolerate it at a lower dose, and those with conditions exacerbated by hormonal cyclicity eg migraine, endometriosis or mood disorders.
This group, if not yet menopausal, accept the trade off that they MIGHT experience a less regular bleed pattern than they otherwise would have done.
There is no harm in trying out both regimes and seeing which you prefer, as long as you ensure sufficient progesterone is taken overall to keep the endometrium healthy.
when the progesterone is not used continuously. This is what Louise Newson means about estrogen receptor down regulation.
Thank you for this. I wasn't aware about the research pointing towards cyclical use being more beneficial over continuous. So that's food for thought. Regarding the Oestrogel, I probably just need to put my big girl pants on and give it a good go. Can I start this at any time in my cycle?
-
Yes, you can start it at any time. I would begin gradually and wait at least 3 weeks on 1 pump before increasing to 2. (1 is unlikely to be enough for anyone.)
If you get to 2 or more, you can also split it morning and evening so you get a more regular dosage.
-
Thank you Joziel!