On HRT - still with symptoms, and now over 55 and Dr says no more...

[speedytortoise]

Firstly, a tentative hello as this is my first foray into Mumsnet, but wanted to find somewhere I might get some pointers and help. Be gentle with me..... :)
I've been on Tibolone for nearly 10 yrs as I was pushed into early menopause by chemo for breast cancer but it was negative for hormone receptors. Doctor and Oncologist were happy to agree, as I was hit badly by hot flushes, disturbed sleep, low mood and changes that made sex very painful. Forgot what the technical name for that was!
So, here I am, past 55 and firstly the doctor has told me that that is the 'cut off' for HRT and he's not happy for me to continue, and I need to come off and try something like Red Clover.
Secondly, I am aware that i still get 'warm flushes', they are a bit irritating but not problematic, but I'm thinking I shouldn't be getting those surely?
Also, I have been suffering with migraines and I would say they started to get bad not long after I started HRT and continued to get worse, and I know they can also be linked to hormones, doctor thinks this may improve once I stop HRT. (Also now on Gabapentin to try and control them)
And finally, I have gradually over the last few years started to suffer with lethargy and anxiety. In my 30's I was unstoppable, had a full time job, part-time bar job, went to the gym, sent dancing, and the gym.... thrived under pressure. Now, if I have one thing that needs doing, a deadline or a worry, it can almost paralyse me with pressure and anxiety. I just don't feel like myself anymore. :(

Sorry, that's a lot of info, but I was wondering if (a) I can insist on staying on HRT (b) another type of HRT may be better (c) does anyone have experience of migraines before/after HRT (d) could this be something else (a friend suggested I get my thyroid checked)
Any other help/advice would be very, very gratefully received, I'm not sure where to go from here.
Thanks

Are you getting an aura with the migraines and does the gp know this?

I’m not allowed hrt for various reasons (I’m 30) and they will not budge. What I was told originally - when I was allowed it - was they’d only give it until I turned 50 as the benefits outweigh the risks till then.

Hot flushes are abpain in the arse, but they’re preferable to The increased risk factors (for me it’s PEs).

Sorry, reread that. Your gp does know re migraines.

Honestly, I wouldn’t insist on something that increases risk for a disease you’ve already had.

It’s a difficult decision speedy.
Tibolone is considered safer regarding breast cancer risks. The good is that your breast cancer was hormone negative, so I guess that hrt doesn’t add more risks.
The breast cancer risks increase with age, especially after 50 but if your quality of life is affected you can insist on taking hrt.
If your scans and mammograms are clear and you have other contradictions or medical problems, maybe remaining on hrt is a good choice.

you have No other contradictions

Helloflamingo I don’t think that migraines are a contradiction for taking hrt.
You have obviously a premature menopause and you need hrt for avoiding the longterm consequences for your health if you have no other medical problems.
www.womens-health-concern.org/help-and-advice/factsheets/migraine-and-hrt/

Sorry, it’s the combined pill that there’s issues with aura - I assumed hrt was the same. I hadn’t noticed the gp was well aware so ignore that.

In my case they absolutely will not budge on it - despite me literally begging for some form of oestrogen - you may find the same now. Had I not been taken off it earlier id only have been allowed to continue till i was 50 because I’ve already had cancer, although it was one thats not caused by anything in Particular. I have a brilliant early menopause consultant, he’s always been happy to discuss all the (limited) options with me.

Is it a gp you’re seeing? If so can You ask to go to a gyn consultant? My gp won’t even attempt to advise me and refers me on which I really appreciate.

Thanks. Think I will pop back to the doctors and see if they will first do a blood test as it's been a while and my mum had thyroid problems, not sure if that is in the mix. It's the crushing anxiety that's really floored me recently. I'm fine with work-related stuff, have a senior position, and cope with all of that. It's just personal stuff. Then if that's ruled out I'll see if I can be referred to a gyne. Thanks.

They should do bloods no problem although any hormone results can be skewed by your hrt. Good luck, I hope you get it sorted.

OP You need another dr!

Sorry you are suffering but everything your dr has told you is wrong

First there is no limit on use of HRT. Read the NICE guidelines. You can use it for life (I've been told I can as long as everything stays ok). I have used it for almost 11 yrs and am in my early 60s.

Secondly migraine is not a reason to discard HRT. Read the info on the Migraine Trust website. Again I have migraine - used to get it around period time- and it was never raised as an issue. (I see a Harley St meno specialist.) But regardless of that it's fine. Some women find their migraine improves on HRT as it balances out the hormones.

The lethargy and anxiety are most likely linked to hormones - ie meno.

It may be that tibolone no longer suits you. Tibolone is a special type of HRT that is a synthetic mix of synthetic hormones linked to steroids. Was this chosen especially re your cancer history? Tibolone is not a first choice for most women.You might feel much better on a straightforward type of HRT such as an estrogen patch or gel, plus a separate progstogen such as micronised progesterone (which is becoming the gold standard for HRT. ) My advice would be you start with a sequential regime which would give a withdrawal bleed like a period, but then you can at least see which of the hormones of the two may give side effects and you can also increase the estrogen till you get relief from all your symptoms.

Overall see a specialist as your dr is out of touch and incorrect.

QotN, thank you. That does make sense, as it seemed odd I am still getting (albeit mild) meno symptoms with the Tibolone, which seem to have become more noticeable over a period of time. I have no idea why that was chosen but may well be due to the cancer history.
How do I find a specialist, would that be a referral by the doctor, or are they independent?
Thanks!

You can see some specialists without a referral. You can just make an appt.

If you are SE /London I can recommend drs.

Thanks, unfortunately not, I'm based in Dorset. I'll see what I can find out, thank for pointing me the right way though. :)

speedytortoise - there used to be an NHS menopause clinic at Poole or Bournemouth - not sure if it still runs?

HRT isn’t contraindicated in migraine but transdermal HRT is recommended.

www.thepoundburyclinic.co.uk/

@speedytortoise As above. I will PM you.

I had that "too old for hrt at 57" from a doctor. I went to a menopause clinic instead.

Bearing in mind the OP has a history of cancer, it’s not quite so straight forward.

Thanks again everyone, I booked a appt with a different doctor (lady Dr) at my practice, and have also booked a private consultation in a few weeks as well.

Hope it goes well 😊