Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Anglichanka on January 13, 2022, 10:41:39 AM
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hello all
I have grade 4 endo (mostly asymptomatic) and have been on HRT for 3 years. I'm on 200 mcg estradot (two patches, changed twice a week); and I take 100 mg utrogestan for 12 days a month. I get a regular withdrawal bleed. But I hate progesterone like lots of women, it makes me fat, depressed, tired and ravenous, so for a couple of months last year I skipped it. This was per advice from the Newson Clinic, where I was told that to skip a couple of months was perfectly safe. They are the ones who put me on the 200 mcg dose of estradot, as I was having severe dysfunctional depression that was interfering with life. Anyway, I recently had an ultrasound to check my endometrial lining, as my GP, formerly a gynae consultant, and very nice, had kittens that I'd skipped two months of progesterone. The ultrasound found a slightly thickened lining and a new cyst on my left ovary to accompany my consistently cyst-y right ovary, so I was sent for an urgent hysteroscopy. The hysteroscopist, a nurse who said she was being trained to be a menopause specialist, was horrifed I was on 200 oestrogen, she said that was extremely high and she'd never ever encountered anyone on that amount. She also thought I was on too little progesterone, even though I pointed out I was taking the utrogestan vaginally so didn't need 200 a day (again, on medical advice from Newson clinic). The nurse was pushing me really hard to get a Mirena, which I don't want. I've spent years trying to get some stability and now I have some (as I now take ADs too, which are helpful), I don't want to mess with anything. She said at my age (52) I was probably post-menopausal by now and so I should consider going continuous not sequi.
I've never heard this before. Nor has any GP expressed any concern about my oestrogen or progesterone doses.
So, my question is: are any of you on 200? Has any medical person expressed concern that this is too high? Or that 100 taken vaginally is too low?
I'm really unwilling to mess with my regime for now, I need stability this year (got a book to write) and I don't want to f*ck with the progesterone either.
I'd be really interested in your views.
My womb was apparently fine, by the way!
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Apart from suggesting you change to conti I agree with the nurse. If you've had blood tests that show you don't absorb well then it's different but for most people that would be too much. I was told up to 6 pumps by a specialist but haven't needed more than 4. Few GPs will prescribe more than 4. Have you had your levels tested?
Some women do need a higher level than others to feel well and I'm sure your specialist knows more than I do.
I do get a little concerned about the Newson advice about utro. The manufacturer says the dose is the same regardless of delivery and it's likely they've done more testing than she has. It's even less likely there has been enough testing of those on a very high dose like yours. Many post meno women use a long cycle (6 weeks) which may be a better option than skipping cycles, maybe worth discussing with your gp. Given the endo I'm not sure a mirena would be the answer as I don't know it would control anything outside the uterus?
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If the regime is working, why change? Could you make a phone appt. with Dr Newson for advice, mayB suggest that she contacts your GP to discuss the way to proceed? If you don't want a Mirena? this is your body and you are entitled to say "I will wait a while before deciding".
Let us know how you get on.
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Thanks both. I forgot, I did have blood tests and they did show I don't absorb much oestrogen so presumably that is behind the high dose. I did tell the nurse I'd consider tapering down to 150 and ultimately to 100. I can't afford a Newson appointment at the moment, not even a phone one.
Of course I'd be able to make better decisions if I knew whether I was post-meno or not, but the only way to do that is to stop HRT so I'd have schedule a year to go completely batshit again. And that's not going to be this year.
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Nope. If it ain't broke ......... you could send an e-mail to Dr Currie on here for a fee asking if how you take HRT is OK?
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You are on what’s classed as high dose but if you don’t absorb 100% then it’s not. Dose should be lowest amount to make you well and control symptoms. There can be a ten fold difference between us in how we absorb, I don’t absorb any. Don’t be afraid of replacing your own hormone, you are only trying to get back what you have lost. Too many of us suffer and left withiutbour hormones. It’s not a dangerous drug but our own hormone.
Keep going if it works for.
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Is you gp happy to continue with this regime? As above, it isn't the dose that's important, it's the amount you absorb. As you have blood tests to show you're not absorbing too much you have a strong case to continue as you are. If your gp won't prescribe you could ask for a referral to an NHS meno clinic (expect a long wait) or you could send an email to Dr Currie. A letter from her should be enough for your gp. Given that you don't get on with utro I'm not sure why you want to be on it continuously? Many women in this situation stay on a sequi regime in meno so the have more 'good' time on oestrogen only.
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Anglichanka,
I do think there is a lack of education around HRT even amongst nurses, gynaes, GPs. I’ve recently had a private meno specialist say that I can’t increase HRT dosages.
All the very best
:)
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Did he/she give a reason Angelasurrey? Lack of knowledge mayB?
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Thanks dear. She said that it’s more than a tablet would be. Also that she wouldn’t go over the amount as it’s too much Estrogen. She’s a london based Meno specialist and honestly only money minded.
I’m completely drained with it all x
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I would try an NHS meno clinic? She doesn't seem to know much about HRT! Private practice is often set up money oriented.
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Is she on the BMS website? I think (hope!) anyone on there is a genuine expert.
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I take 100mg of Utrogestan ever other month for 12 days, am on 1 pump of gel, I am not sure how that compares to your patch. 1 pump of the gel contains 0.75mg of oestrogen. What is a mcg how does that compare to an mg, I get so confused, always have done, but then again, physics was always my weak point.
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I'm on 2 x 100mg patches as well as 3 pumps of gel. I did have the mirena fitted though before lockdown but I was told that 1 utrogestran was sufficient (I took 1 every night).
This was under a BMS nhs specialist. Though I had a bit of a fight on my hands as they do not believe that levels need to be over 200 pmol/l and that anxiety / mood swings caused by decrease of oestrogen cannot be remedied by hrt
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do you still have the mirena? do you get on with it?
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I do. Tbh I was really hesitant due to hearing negative experiences but had to make a quick decision as it was at my March 2019 appointment and havent regretted it. Have had no issues whatsoever. Its nice to not have to think about the progesterone part.
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I'm on 2 x 100mg patches as well as 3 pumps of gel. I did have the mirena fitted though before lockdown but I was told that 1 utrogestran was sufficient (I took 1 every night).
This was under a BMS nhs specialist. Though I had a bit of a fight on my hands as they do not believe that levels need to be over 200 pmol/l and that anxiety / mood swings caused by decrease of oestrogen cannot be remedied by hrt
Well that blows my theory. What's the point of a BMS specialist if they don't know what they're talking about either?
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Hello everyone! I’m new here, although I have been reading about women’s experiences on this forum for a long time to help me navigate my own symptoms due to Premature Ovarian Insufficiency. I’ve been extensively researching the subject of menopause for the last year and a half and reading this forum has been a valuable source of information about real life experiences of menopause. One thing that stands out is: all women are so different!!!
Hi Anglichanka, I am on 200mcg estrogen patches too and I also have been getting help from a specialist at Newson Health before I had to go back to NHS for financial reasons. And I have endometriosis too. And I am on 100mg Utrogestan, although I take it continuously, every day, and orally. I am still having my own cycles, but the Newson Health specialist said it was ok for me to go on continuous Utrogestan due to my endometriosis, so I also have a less usual regime of the Utrogestan, as normally women in perimenopause are on cyclical. But I’m happy with it. We seem to have a lot in common so maybe we could exchange private contacts, if you want?? It can be quite disheartening sometimes that we have to fight the NHS on our treatment even more that other women who are on standard doses.
When I left the Newson clinic and went back to the NHS, I was on 150mgc and they had to give it to me to continue the treatment that was working well for me at that time. A couple of months later my symptoms started coming back and having had a lot of knowledge on the subject by then and knowing my own body well and also taking my young age into consideration (young women need higher doses) I asked for an increase of the dose. My GP didn’t want to increase the dose as it was already above the licenced dose, but she was kind enough to email my specialist from the Newson clinic about it. My specialist said that she fully supports increasing the dose to 200mcg and even further if I feel that I would benefit from more and that it is necessary for good symptom control. My dose was then increased, and I felt better instantly.
One issue that hasn’t been tackled in those emails was my problem with the patches ‘running out’ before the patch change day which makes my symptoms come back before the new patch is due. I have asked my GP to let me change them more often, but she didn’t agree, telling me that it isn’t safe (which I think is ridiculous, because if anything is not safe for me is having low levels of estrogen on certain days which make me feel like I’m going to die, and I feel normal again when I change the patches). I was forced to write an email to my specialist at Newson Health a few days ago to ask for a support to my claim. I called the admin team about my email and asked if this can be sorted that way and they were very helpful and told me that my specialist should get back to me in up to a week.
So right now, I am waiting for a reply, but I encourage you to do the same and just email your specialist at Newson Health to support your current regime of HRT that they have given you and tell them that you have to be on it and that it is safe for you.
Don’t change it if it is working well for you, only because some NHS nurse training for menopause was shocked at your high dose. It is hardly surprising that she was shocked as women have been denied hrt altogether for decades now, which we now know that was very unjust to women. The result of that situation is not only that women had to suffer so much even though there was available treatment but also that the GPs and nurses have very little experience treating women with HRT and don’t come across that many women on HRT, and women who need their doses to be adjusted differently than average are going to be rare for them indeed. These people know next to nothing as we women have been so neglected by medical research for decades. And it will take decades to fix it.
Unfortunately, less usual cases like you and me don’t have decades to wait until the whole medical world starts appreciating our unique needs. We need to feel normal now and protect our future health now. And we need to prepare ourselves that we will have to fight for our treatment more than other women. At least you are lucky that your GP is OK with your treatment. And luckily for the rest of us there are specialists like Dr Newson who are already working on changing the situation and they know from most recent research and their own broad clinical experience that some women need higher than licenced doses because women have different absorption rates, different metabolisms, different age and different levels of estrogen that they feel good on. And some, like me for example, have a combination of all those factors that qualify for a higher dose. Therefore, I expect that I will have to increase even further than 200mcg in the future.
So, take care and don’t let them break what your specialist has fixed. It’s not them that will end up in a new hormonal mess but you.
You can contact me privately, but I don’t know how to do it… Btw, are you Polish? Your username looks a bit familiar to me but with English spelling, not sure ;)
P.S. I was shocked when I went to my pharmacy and to Boots in my town with a prescription for Estradot patches and they told me that they have never had them before and that I am the only one in town ordering them……… It made me feel like a pioneer here in town ;D
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:welcomemm: Rosycheeks