Finally feel like I'm at the right dose of HRT but GP is telling me that I need to consider stopping soon?

[moderdy]

I am 48 now. I've been on HRT since 43. I started on a 50mcg estradiol patch and 200mg progesterone (utrogestan) capsules 12 nights a month. After a few years when my symptoms returned I had to fight to get moved up to 75 mcg estradiol and then again to 100mcg. Prior to each increase I felt like hell, I wasn't sleeping, I had terrible joint pain, hot flashes, the worst brain fog and low mood, crippling migraines and there were times I seriously contemplated ending my life because it just wasn't worth living like that. I've just had my first review with my GP after starting the 100mcg (she has me in to do my blood pressure, weight and blood sugar, cholesterol every 6 months while I'm on HRT) and my blood pressure is down, cholesterol and blood sugar are now in the healthy range when previously they had been creeping up high. Its not all perfect but I was telling her how much better I was feeling and sleeping, that I was exercising more, doing strength training, losing weight and back working again. She said that was great but then reiterated how "you can't stay on HRT forever" and that in the next year or so we'd need to have a conversation about my reducing the dose and then stopping essentially as soon as possible as I have already been on it now for 5 years.

I just can't face the possibility of stopping at any point or not for a long time. I'm not even 50 year so still have almost two decades where I will need to be working and earning and I just have no quality of life without the HRT being at the right dose. I'd love to try the testosterone and be prescribed some vaginal estrogen but it feels like any mention of additional hormones is met with such resistance from my GP.

I was searching online about this and found the UK GP subreddit where it looked like a lot of GP's were saying the same kind of things that HRT was too risky and that demand for it had got out of hand, that is should only be for hot flashes and was over prescribed and demanded for mental health and sleep issues now. This was in a post after a high profile HRT advocate was diagnosed with breast cancer.

I do want to stay on HRT long term, I looked at the nice guidance and the British menopause society and both say there is no longer any defined deadline to stop HRT and that staying on longer term is a choice to be made between the patient and doctor taking individual risk factors into account. Why are GP's ignoring the guidance like this and how can I stay on HRT long term, for me my life was hardly worth living without it.

'Why are GP's ignoring the guidance like this'

Excellent question. The guidelines are clear as day

As you know, your GP is full of hot air and not following guidelines. You absolutely do not have to come off HRT just because you have been on it for X amount of time. It sounds like HRT has been life changing for you (unsurprisingly) - of course you want to stay on it.

I highly recommend testosterone and vaginal oestrogen too - I'm having success with both. Absolutely no reason whatsoever why your GP shouldn't prescribe vaginal oestrogen for you - no risk at all. You can ask for a baseline blood test for your testosterone levels so start there

Ultimately though, it sounds like you may need to see a different GP - you shouldn't have to, but this one sounds totally out of date. If private menopause care is an option for you, Newson Health are excellent. Good luck

That’s ridiculous. My dads partner is 76 and still on HRT and said she is never coming off it

This is such outdated advice. I would arm yourself with relevant BMS guidelines and quite ad nauseam. Any family history concerns eg. breast cancer they could be referring to? In any case additive risk is uncertain.

I didn't even begin till I was 60..now 63 and there's no way in hell I'm stopping! The only way that would happen is if there was a serious health issue. Why are the GPS still coming out with all this outdated crap.

@Lottapianos I have thought about just ordering a private blood test for testosterone then if low getting it online but ideally I'd do it though my GP so that someone had an overview of what I was using. Unfortunately private healthcare isn't an option for me at the moment as my ability to work has been patchy in recent years. Maybe in a year or two I might be able to afford it. I have previously bought some vaginal HRT but it ends up being quite expensive so I don't buy it for a while then things get so bad I finally buy it again. It would be good to get it from the GP.

I know that one nurse at that practice who was made to stop by her GP here goes privately when visiting family in Poland to get her ongoing HRT prescribed. Its crazy to me she has been unable to continue here normally she hasn't for example had breast cancer.

So no there is no family history of breast cancer or uterine cancer. One of my fathers cousins had breast cancer but it was a non hormone receptor cancer so not relevant to HRT, she is thankfully still with us in her 70's. I hate going in the doctors quoting the guidelines at you because they seem to hate it but I will if I have to.

In discussing this with your doctor I would refer to the nice menopause guidelines and make the following points – that treatment is symptom based, there is no upper age limit, it can be continued whilst benefits outweigh the risks and that the decision should be joint between the patient and the provider.

It is true that as we get older symptoms might resolve so that we no longer need it however if reduced (keeping in mind that symptoms might return but resolve after 4-6 weeks as the body adjusts) if symptoms continue after that then treatment could be increased up again.
Just to note with a 100 patch, if you are still taking 200 mg of progesterone and on a sequential regime, this should be increased to 300 mg. On a continuous regime, the progesterone dose should be 200 mg.

Topical oestrogen can be used with systemic HRT if you have GSM symptoms as it’s a tiny dose with little systemic absorption. Again guidelines can be referred to including from the British menopause Society.

Testosterone off-licence might be prescribed for libido issues, however your doctor is not obligated to do so, it’s not included in some area formularies and might be a case of referring to a specialist instead if you need support with this.

@ringsnthings I have no idea, I wonder if my GP has breast cancer in her own family? I also think she runs a lot and seems to think exercise cures all which perhaps it does but I was in too much pain and too exhausted to exercise at all prior to HRT.

Follow Kelly Casperson and educate your GP to listen to her podcast ‘you are not broken’. I agree with others, with the start of testosterone and vaginal oestrogen too.

I have been on HRT for 12 years and no one is saying I have to stop it. Perhaps what the GP is implying is that, at 50, you are an age when people go through menopause? You do not have to.

Id be furious with my GP advising on the basis of outdated advice. It’s not like this issue haven’t been done to death in recent times. Your life is so dramatically affected by this I’d seriously consider changing GPs or going private - and filing a complaint for malpractice because your GP is withholding treatment without cause. You’d need to build a case. She needs challenging. Is she the head of the practice? You can put together a package of information and ask for justification. Doctors don’t like being challenged by civilians but ultimately this is your life and she’d be making you live with the consequences.

I've been on HRT since 2013. My GP recently asked me about coming off of it and was firmly told that it would not be happening!

I keep reading about testosterone but as I understand it you cant get it on the NHS?

@over50andfab Sorry yes I am on 300mg sequential utrogestan, I just started on 200mg when I was at 50 mcg estradiol.

That is good information on the testosterone I will look into that to see if it might be available in my area or not.

I will try and see again if I can get some vaginal estrogen next time I am in as that to me seems quite critical in preventing worsening problems in the future.

I think that is the issue I suppose. I want to feel well and the higher dose of estrogen gets me there but my GP sees it as a way to prevent hot flushes and that is about it. I suppose I just dread having to reduce my dose, feel awful for several months then plead to get my hormones back up again but I suppose I will cross that bridge when I come to it.

@canklesmctacotits She is generally a good doctor but she is just weird about HRT I think. I certainly don't want to complain about malpractice. I suppose I can just try and see myself as slowly trying to change her perspective on this for the women who come after me. I do try to avoid seeing her or rocking the boat too much because I fear she'll just try to take me off the HRT she did due to my migraines when it was actually increasing my estrogen that made them stop!

From other posts it appears that it seems to vary from trust to trust and not all will offer it to women so a bit of a postcode lottery.

I get the impression she just feels that the breast cancer risks are too high especially after 5 years and is of the school that you should use the lowest possible amount for the shortest possible time whereas I want to be able to live my life. I don't expect to feel 25 or even 35 anymore but I was literally suicidal.

Feel for you I’d be frantic at this prospect. Can you see a different GP at your practice? Ask for a referral to nhs menopause clinic if she refuses to budge in view of your right to treatment & need for specialist care if she is not prepared to give you what should be standard routine care. Makes my blood boil GP’s like this. I’d complain to the practice manager if she refuses, citing BMS guidelines on Genitourinary Syndrome of Menopause too & clear evidence you are being prevented from receiving your right to treatment in the presence of no major risks. I hope she doesn’t use weight or any other markers to justify her stance. Not saying you are overweight OP I’d just be prepared for a fight & if she starts using metabolic risk factors get a clinically evidenced answer ready to be able to head her off. Good luck. Got menopause rage on your behalf! 😡

It always blows my mind that some GP's are so conservative when it comes to HRT, in direct contrast to how keen they are on prescribing contraceptive hormones for any female related issues. Why the difference?

Anyway, my GP says we will reassess in my 70's, I am not yet 60 😁

If all your symptoms are currently resolved then there is no need to add in testosterone or vaginal oestrogen. Some women find that systemic HRT is sufficient to control VA symptoms, about 20% of women need systemic HRT and topical oestrogen. If you have libido issues, then it’s important to ensure that the genitals are adequately estrogenised e.g. with estradiol pessaries or estriol cream. Using vaginal/vulval moisturiser is also part of guidelines
It’s important to stress that treatment is symptom based and your best bet is to follow reliable guidelines and resources in discussion with your Dr rather than anything you might be reading on social media. The British menopause society has good resources on testosterone and Genitourinary syndrome of menopause.

@HVPRN fully second the idea of following Kelly Casperson.

I found her podcasts a few years ago when I was facing prolapse surgery. She is a whip smart woman and also highly entertaining.

Though I do get shocked at some of the sex stuff!

I'm so sorry OP. Good luck with the GP. Vaginal oestrogen is prescribed even to women after cancer treatment. It is a local hormone, it doesn't add to your systemic load.

I am 79 and have been on HRT for 40 years. My GP is quite happy with the situation. I will be on it until I die.
Your GP is out of date which I think is shameful especially as she is a woman treating other women.

Same. She’s 84 and looking bloody good on it.

I’m sure GPs must be under some financial pressure to ease people off repeat prescriptions after a certain amount of time. With the big push in the last decade to finally get menopausal women the care and treatment they deserve, and with the prepayment certificate meaning the cost to the individual is negligible, I’m guessing the bill for HRT provision is steep and constantly increasing.

Which should never be the reason to stop prescribing it, but we see these kinds of decisions being made across the NHS all the time. I’ve been on it for 6 years (not yet 60) and have zero plans to stop any time soon.

I asked about when to stop when having a coil change and the GP said it was totally up to me and that they have some ladies in their 90s on it.

Given my joints and high risk of heart disease, I'm staying on it.

Your GP is going on outdated advice. The new research narrows the risk of breast cancers and HRT. But some want to go on ancient research without getting clued up on the newer stuff.

You'll have to get educated and go armed.