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[RebJT]

Reb, are you peri and how old are you? and (if this isn't too many questions) why does your dr want you to be around 600pmol?

Just asking because I'm on 6 pumps of this Oestrogel and only 334pmol. I don't seem to absorb from patches either as a 75 patch only gave me 198pmol. (That was why I switched to Oestrogel.) My dr said 400-600 is where most women are symptom-free.... I am probably going to switch to Sandrena next as well but not sure how to dose it. I'm with Newson so shouldn't have probs getting a higher dose.

Hiya, I'm 51 and my periods are still bang on 28 days.  I've been on HRT since I was 46 ish.  And yes Newsom should just up your dose til you feel better.  I am pretty sure that Newsom did a survey on blood levels and symptoms?  There's obviously a clear link between dose and blood levels.  What's less clear is blood levels and symptoms.  I think I saw it on instagram, will check.  And pre starting HRT my levels were always high - 1,200, 1,500, 1,800, 2,000 etc so I'm one of those people who feel better with my levels further up in the range.  I get horrible vaginal soreness, tiredness, fogginess, itchiness etc when my levels drop.  Plus, I'm vain, and I like how plenty of oestrogen gives me nice bouncy skin!

I do not understand the NHS hysterics about pumps and doses, it doesn't sound evidence based.  The reason I'm private is I had life threatening catastrophic thyroid disease (also hormonal disease), the NHS misdiagnosed me for ten years, and then utterly botched my care and replacement hormones.  Having come up against the bohemoth of medicine, and frankly woman hating levels of sexism, and the madness of 'treatment pathways' (ie the good old boys got around a table and agreed on a consensus, with not much science involved) I decided the NHS was never coming near my hormones ever again!  The deciding factor was asking for my notes, OMG the lies.  It's not worth arguing.  Private is obviously expensive from a consultation fee point of view, but I now only have one consult a year, and private HRT isn't that expensive.  On balance it's worth it for me, as I have a lovely gynae who will listen, she really cares, and will get in the trenches with me to work it out.

GS
x

[RebJT]

PS along the way, I've learned it's always good to know more than your GP!  The British Menopause Society's treatment guidelines (which NICE then draw on and stingily pare down) are worth a read https://journals.sagepub.com/doi/full/10.1177/2053369116680501  Nick Pannay also wrote a book for GPs on management of the menopause, if you have a basic grip on science, it's pretty readable.

Nick Pannay is the NHS' head bloke on menopause, it was him who wrote to my Sis in Law's GP (who rang her at home and shouted (yes really) down the phone at her for ten minutes) and her back stop when the shouting starts again (I wish I was making this up) is 'are you saying you know more than Mr Nick Pannay, he wrote the guidelines?'

[RebJT]

Hi RebJT,

Thank you so much. Its so good to be heard and not made to feel like I'm either doing something wrong or am mad.

Like you, I struggle with Utro. Even vaginally, it doesn't suit me - I feel awful on it. (In desperation I tried it rectally, and this so far has been by far the least problematic, although I am well aware it's not designed for this). I will be trying Cyclogest next....

Some on this forum once said "if I needed as much progesterone as the medic profession claim, my endometrial lining would be 5 inches thick"... and I agree. I don't believe all women need this uniform amount of progesterone.

Confession, I only take utrogestan every 2 or 3 months. My scan was absolutely fine. I'd never suggest other women do this. I'm just sharing my experience.

I'm totally with you.  My gynae says post meno I'm going to be one of those women who still does long cycle P with regular scans, three months E only then a short course of P and a withdrawal bleed, we'll see.  I have histamine intolerance so whilst P is histamine calming to a point, it also rattles mast cells, so it's a tight rope.  And honestly given my own health woes, people would be shocked to realse that much of what doctors solemnly declare as fact is no such thing! 

And the French are big fans of administering drugs rectally, if it works, why not.  Those baby scan places, it's about 60 quid for an endo scan, they are generally very lovely and respectful and send you an email of the images which I then send to my gynae.  I used to live in Greece, you could literally walk into a gynae's office and get a scan for 15 euros.  It's just bonkers that the NHS can't organise regular scans for women.  Same on cervical smears, they stop those in late middle age despite one in five cervical cancer patients being over 65.

And I am of course not a doctor, and I have and listen to a doctor who is abreast of all the facts about me, but we know our bodies better than anyone.  If the dose isn't equivalent, then it's not equivalent.  I'm fortunate I have one of those lovely gynaes where I can say, I felt terrible on X so I put the dose up to Y and she says 'OK'. 

DPD have just delivered my Sandrena, I've been hanging on for it to arrive, so wish me luck!

GS
x

[RebJT]

Hey

Sorry to spam the thread, but just been googling about Sandrena

Louise Newsom - some women find Sandrena absorbs differently https://www.balance-menopause.com/menopause-library/oestrogel-and-sandrena/

Think I've discovered the stinginess on dosing, Sandrena costs the NHS nearly three times as much (ignore dosing in this document)  https://www.enhertsccg.nhs.uk/sites/default/files/content_files/Prescribing/Local_Decisions/Obstetrics_gynaecology_and_urinary_tract_disorders/Oestrogen%20gels%20%28Oestrogel%C2%AE%20%26%20Sandrena%C2%AE%29%20for%20hormone%20replacement%20therapy%20%E2%80%93%20Decision%20Document.pdf  (link won't paste correctly, title of document is HERTFORDSHIRE MEDICINES MANAGEMENT COMMITTEE (HMMC) Oestrogel® & Sandrena® for transdermal Hormone Replacement Therapy (HRT) 

Dosing, Women's Health Concern (the patient arm of the BMS) https://www.womens-health-concern.org/wp-content/uploads/2022/11/27-WHC-FACTSHEET-HRT-Doses-NOV2022-A.pdf

On that last one see page 3 on equivalences.  According to them:
Gel-pump 1 pump = 0.5mg sandrena sachet
2 pumps = 1 to 1.5 mg sandrena gel sachet
3-4 pumps = 2 to 3 mg Sandrena Gel-Sachet 

Given a choice between trusting the NHS or trusting the British Menopause Society, I'm going with the BMS.

Hope that helps,

GS
x

[Banjo1973]

RebJT you are a star.

Like I said, 6 months ago 2mg was the 'maximum' dose. Now suddenly its 1.5mg.
And obviously the estrodoil content didn't tally either.

I was always sceptical, I thought it was to manage supply. Of course you're right. It's most likely all down to finances.

I also want to thank you for the information on progesterone. It seems to be a touchy subject here - but I have to do whats right for my individual body and I must not need much progesterone as 2 years on minimal utrogestan and a medium/high dose of estrogen has not resulted in a thickened womb lining. Great idea re. Getting scans done at an antenatal clinic.

And as for rectal utrogestan (some women on ivf do this but i do know its not designed to be taken this way) - I believe it is absorbed way better for me as it actually produced a sedative effect and crazy dreams.

Keep sharing your information. We need to heat more from people who the 'one size fits all' approaches are not working and possible solutions.

Thank you so much and good luck with Sandrena. Ixxx

[RebJT]

Hey

You're welcome!  And I agree, this is a key women's health inequality issue (I was reading yesterday that only 2.1% of research spending is on women's reproductive health, we are 51% of the population!!).

As for dosing, I'm on day two, I was much more cheerful yesterday so something's happening but remains to be seen on dose, I'll keep testing (another top tip, oestrogen blood test only £50 at Nuffield Health through their online booking service, blood draw at your local Nuffield Hospital).

The main reason women give up on HRT is because of progesterone, I personally think it's unacceptable that so little work is going on in gynaecology to find workable solutions for those women who are really struggling (like PMDD, progesterone sensitivity can cause similar life cripling issues) other than 'we can cut your womb out'.  It's like hysteria treatment 2.0.

Anyway, watch this space,

Cheers

GS
x

[Tynkabelle]

Looks like I am going to be contacting my Dr to change from Oestrogel to try Sandrena ..,

I have been using the white top bottle for almost 2 months now and can safely say most of my symptoms are back - currently have a chevron type migraine which is the final crux of this 😡
… when on the blue top bottle had no issues and seemed to suit - going to do as others have done with contacting the supplier as another female not happy …/grr

[Banjo1973]

Hi Tynkabelle,

From myself, and the people o know, the transition to Sandrena (from Oestrogel) was very smooth.

Good luck xx

[Tynkabelle]

Banjo - Thank you 👍😀

[joziel]

Reb, sorry I missed your reply to me above. Thanks, that makes sense. I've also had a bad thyroid experience with the NHS - in that I'm a poor converter from T4 to T3, but they don't want to know because my TSH and free T4 were always normal. So I've had to go private to trial some thyroid meds to see if that helps my symptoms. I'm on both T4 and T3 at the moment (50mcg T4 and 30mcg T3 a day, with the T3 divided doses.) I am probably going to have to trial coming off the thyroid meds once I've experimented with them, as I'm not sure I need them and don't want to superstitiously be on thyroid meds for the rest of my life. I'm a bit anxious about coming off them...

And so yes I'm private for thyroid (with Dr Momi, started out with Dr Conway) and also HRT (newson)

By the way, have a listen (everyone) to this podcast, I love it, it's v smart and intelligent and essentially makes you rightly outraged at what women have to deal with: https://podcasts.apple.com/gb/podcast/visible-women-with-caroline-criado-perez/id1627229311

[GypsyRoseLee]

Hey

You're welcome!  And I agree, this is a key women's health inequality issue (I was reading yesterday that only 2.1% of research spending is on women's reproductive health, we are 51% of the population!!).

As for dosing, I'm on day two, I was much more cheerful yesterday so something's happening but remains to be seen on dose, I'll keep testing (another top tip, oestrogen blood test only £50 at Nuffield Health through their online booking service, blood draw at your local Nuffield Hospital).

The main reason women give up on HRT is because of progesterone, I personally think it's unacceptable that so little work is going on in gynaecology to find workable solutions for those women who are really struggling (like PMDD, progesterone sensitivity can cause similar life cripling issues) other than 'we can cut your womb out'.  It's like hysteria treatment 2.0.

Anyway, watch this space,

Cheers

GS
x

Hi RebJT

Can I ask what method you use to test your oestrogen please? x

[Tynkabelle]

Well Drs were straightforward when I asked to change - no issues and immediately prescribed Sandrena and give them an update in 4 weeks.
I have completed the Yellow form and got a reply to answer a few questions and to wait till they advise where to send the Oestrogel bottles to.
I also emailed the supplier to add my name in relation to Oestrogel and also got a response confirming that an investigation was already underway and thanks etc
Thanks for providing links in the thread as contacts etc

Picked up the Sandrena today and it is going to be interesting in terms of correct dose.  I read further above about what we should be on and saw about cost to NHS
I was on 4 pumps of Oestrogel and it looks like I am going to be on 1 sachet/1mg a day - which does not sound correct, but will give it a go

Thanks all for the advise 👍

[Gnatty]

They have halved your dose surely? You want 2mg for equivalent.

[Tynkabelle]

Aye, my thoughts exactly.  Will see how it goes and then get back in touch with them 🤔

[Tak]

Interestingly I have just received my new repeat pump packs, one is the cylindrical new style with white top in the branded box, the design of this box is slightly different to previous ones, the other is in a generic box marked on the side “procured from within the EU” & “ repackaged by pharmagen ltd” this pump pack is the old conical type with blue lid & green square, French text on the back but there was a large added on sticker in English on the front “ oestrogel pump pack 750 micrograms etc” peeling this off the label underneath has a blue swirl and Oestrodose on it . So the substandard stuff is being re-labelled to disguise it.
    Also my repeat utrogestan has been substituted with a different micronised progesterone capsule manufactured by zentiva. Anyone else had any experience with this?