...to still be afraid of starting HRT?

[ohime]

Hello collective wisdom, and many thanks in advance for reading a very long post (which is probably a question lots of people have already asked). I'm seeking some AIBU and WWYD advice because I don't feel that my doctor is taking my concerns seriously. This could mean of course that my concerns aren't serious - thus the reality check!

I'm 58 and have been post-menopausal for quite some time, I think around four years. My menopause, as I perceived it, started around 52 and lasted for around two years with mild symptoms, mostly hot flushes and brain fog. I was happy to endure these, as I'd always had painful periods and was looking forward to leaving them behind. When it all seemed to stop I thought I'd got off lightly, without needing to resort to HRT.

I was prescribed it though, by a young doctor who, to me, seemed oddly cavalier about the risks. At the time my genetic makeup and family history were completely unknown (my mother was adopted and I never knew my father); for all this doctor knew, every female relative on both sides of my family could have died of breast or ovarian cancer, and yet she didn't seem to think caution was called for, which I found odd.

I'm part of the lost generation in relation to HRT, due to the Million Woman Study and its fallout where the medical establishment was completely freaked out about hormones and basically stopped prescribing them. They seem to have started up again with a vengeance though, and to me it looks like they're now pushing HRT for everyone under a blanket notion that the benefits always outweigh the risks.

Having just turned 58 I'm suddenly experiencing more symptoms, and they're much worse than the previous ones: copious night sweats where you wake up in a horrible chilly puddle, complete body temperature dysregulation (so I'll be boiling when it's freezing in a room, or freezing when it's 21 degrees), and extremely painful musculoskeletal issues - my right hip, for example, hurts so much that when I get up from a chair I can't stand, and would fall over if I didn't hold on to something. But even worse is the rage. About stupid, small things. I've always been very even-tempered - I told a friend the other day that I'd been ranting and cursing and throwing things around in fits of pique, and she didn't believe it - so this is making me feel like I'm losing myself. Back to the doctor, who - no surprises - has prescribed HRT.

This time I'd had a DNA test. I don't have either of the BRCA genes or any other cancer genes, but apparently I have an 'increased risk' (16%) of breast cancer, although the reasons why are somewhat opaque. In her 80s, my mother said she had a breast lump which her doctors were 'watching' rather than doing anything about; I never really knew much about it, but it added to my general paranoia!

Part of the background is that I had a friend who died of breast cancer several years ago, at around my age, after enduring several years of really horrible chemo. Coupled with the bad publicity HRT has received during most of my adult life, and with whatever was going on with my mum, I feel like my own judgment is very coloured, but then again my paranoia may be justified. So, AIBU? And WWYD? Even if you just have a minute to vote YABU or YANBU, it would be extremely helpful in the reality-check department and I'd be very grateful. And I promise not to throw anything or curse (much)...

Oh dear, was that an error on the doctors part? What sort of hrt was that?

I started on HRT in August, I was 67 earlier this month. I went to my appointment armed with info to back up me wanting to try HRT - I had the most amazing talk with the menopause nurse who explained the risks etc. I’m on the Lenzetto spray and Utrogestan tablets. I had had hot flushes and night sweats since I was 43, these virtually disappeared within a couple of weeks of starting HRT. I now feel that my body can regulate itself with temperatures - I actually fastened up my warm coat the other day as it was so cold outside, something I haven’t done in years as I was always ‘too hot’. As for sleep! I no longer wake up several times a night, my husband says I hardly move! Although I do feel that I could sleep for England - maybe it’s my body catching up on the years of poor sleep!
I was disappointed to be told that ‘the ship had sailed’ regarding HRT protecting my brain, heart and bones, that it’s too late by a good 15 years. All because when I was 50 my then (younger than me) GP told me he wouldn’t want his wife on HRT because of the risks (we now know ‘that’ study was wrong) and prescribed antidepressants instead.
I wish I’d started HRT sooner.

I arrived rather late to the HRT party and started taking it 3 years ago at the age of 64, a full 14 years after menopause.

I mostly wanted it in order to protect what's left of my bones (I have osteoporosis). But I've noticed other benefits. My heart palpitations (ectopic beats), that I'd had for almost 20 years, stopped within a day or two of my starting the HRT and haven't returned. I also no longer wake during sleep needing to empty my bladder. In general, my bladder seems "younger" than it was, in that I no longer need to go to the loo as often as before.
I also no longer seem to have SAD.

I'm told that the transdermal oestrogen patches, such as the ones I use, carry very little risk of breast cancer. I check my breasts monthly and always attend for mammograms when called. I think my risk is low, because I hardly ever drink alcohol (and I never have more than one glass of wine when I do) and I'm not overweight. Both of those things, especially if combined, carry a much higher risk than HRT does.

You need to do more research. There is an excellent Facebook Group The Menopause Support Network which has lots of resources in the files section, including all the stats on risks, all the NICE guidelines etc etc.

For me personally I don't know what I'd do without HRT. I too was afraid of the risks and saw it as bad. I had horrendous symptoms from 48, but resisted HRT and my life was hell. I ended up losing my job.

I finally went on HRT at 54 because the feeling of lack of joy added to the rage, panic attacks etc tipped me over the edge. I just couldn't live my life like that.

I've gradually increased my dose to the maximum as after starting I had more physical.symtoms - xaginal atrophy, vertigo- that began 4 years after menopause.

All my symptoms are now alleviated, apart from.a lack of motivation that I think I'll have to learn to live with.

Bad Menopause runs in my family. My mum became four tempered in her late 40's, never went to the doctor about it and basically limped along angry and depressed. My sister was sectioned at age 51, nobody ever suggested Menopause as a reason at the time but she's now on HRT and totally fine.

I do think you have to weigh up the risks against the lack of quality of life. Of my close friends only 3 of us are on it, the rest haven't had debilitating symptoms so feel they can cope without.

Having just turned 58 I'm suddenly experiencing more symptoms, and they're much worse than the previous ones: copious night sweats where you wake up in a horrible chilly puddle, complete body temperature dysregulation (so I'll be boiling when it's freezing in a room, or freezing when it's 21 degrees), and extremely painful musculoskeletal issues - my right hip, for example, hurts so much that when I get up from a chair I can't stand, and would fall over if I didn't hold on to something. But even worse is the rage.

So, these are concerning symptoms, but you are 4yrs post menopause. It is very unlikely that fluctuating hormones are causing these new symptoms.

I would be asking the GP to urgently investigate the symptoms as they are both suddenly new and severe- there are some nasty illnesses like AML that also cause that shivery feeling, night sweats and joint pain. The rage could be a psychological reaction to being ill and frustrated with being ill.
https://www.nhs.uk/conditions/acute-myeloid-leukaemia/symptoms/

Your gut feeling to not take HRT might be your intuition telling you this is something different and HRT is a waste of time.

I'm sorry to hear this. I've just started HRT and am a bit worried about this happening to me.

I do understand your concerns but honestly HRT saved me! I had rage, I was down in the dumps and out of sorts so I went on a low dose. Then after weeks with night sweats, nearly collapsing with a temperature (I'm a cold body so I'm never hot) I went on gel and capsules and within 2 weeks I was myself again

Lack of estrogen affects everything. Being on HRT will help my bones and my heart and more importantly helped me function. I will have to work until I'm in my 70s and I just couldn't function without it.

Symptoms can occur and be present at any time. Just look at this thread where someone started HRT at 67.

My understanding is that it is a myth that ovaries are suddenly on zero output post menopause. They do continue to produce tiny and variable levels of hormones. I was told this by a gynaecologist.

It’s a massive jump to get to leukaemia.

I'm sorry I've forgotten which type but yes admitted error by the GP who apologised. However she now has to have 3 monthly scans and bloods for the foreseeable.

To answer your question OP. I think the best thing you can do is as much research as possible. There’s lots of responsible resources available.

A starting point for you could be a 3 month trial and see how you get on.

Re breast cancer, as PPs have suggested there are preventable and non preventable risks. Being overweight or obese is a big risk factor and two thirds of the female population are in that category.

Maybe read oestrogen matters by Avrum Bluming - he's an American breast oncologist who basically takes apart the 2000 study and evaluates it very clearly against newer research.

“Tiny and variable levels” are not likely to cause sudden and severe perimenopausal symptoms at 4 years post menopause. The poster who started HRT at 67 had had her symptoms continuously from age 43. This isn’t a comparable situation.

I am not diagnosing anything, I am advising the OP to have her symptoms investigated because they could be caused by something else- a worst case hypothetical being AML.

You can’t recommend a treatment without first investigating the cause of the symptoms. This is why inter-menstrual bleeding is always urgently referred for a scan to check for womb cancer despite the same symptom also being caused by peri-menopause. The problem is when we start assuming it’s always menopause related, skip investigating symptoms, and start HRT. HRT can mask serious, even life threatening illnesses or delay diagnosis.

OP- please get your symptoms investigated. There is no guarantee that your symptoms are due to hormone fluctuations.

I was told that the latest research is that he’s there might have been a link in the old form of tablets but that the modern other versions are much less risk (nothing is risk free obviously) or no more risky than other medications or lifestyle.

I was diagnosed with early menopause and the nurse and the gp were very firm that the HRT was to be seen as a medication to avoid bone and cardiac issue and that the lowering of symptoms was just a bonus for me but that was not why I was being prescribed it.

i don’t have access to know if my family history puts me at cancer risks so my view is I have to decide to take the hrt to avoid definite risks of bone and cardiac issues in the future or not take to avoid the theoretical risk of cancer in the future.

theoretical because I don’t know my actual risks and as far as I know the nhs don’t do screening unless there is a good reason to do it. Maybe I’m wrong about that and other posters know?

I would never push HRT on anyone but I do think it’s important to do your research to make an informed decision and not just avoid it due to fear with no actual real information of the reality of risks etc.

good luck @ohime

I would add though @ohime that sudden new symptoms need to be checked as this might not be menopause related.

im not trying to scare you but the truth is these symptoms can be menopause and very well might be but they can also be something else entirely (some serious) so please book in to the gp to get checked out.

I definitely had new symptoms starting 4 years after menopause. Vaginal.atrophy and vertigo. The vertigo is because there are oestrogen receptors in the inner ear. The oestrogen 'lubricates' 'the inner ear and a lack of oestrogen in that area can lead to balance issues.

I see a menopause specialist and she said new symptoms after menopause are very common.

Of course people should be checked to see if its something else but it is plain wrong to suggest symptoms don't come on after menopause because they do.

@Movinghouseatlast quite. I have several friends in this exact scenario where they thought they were relatively unaffected only for symptoms to start post
menopause.

I use topical estriol cream for vaginal atrophy and urinary issues caused by the menopause. It’s been a life saver. I’d never use systemic HRT tho. Just my personal choice. My mood swings and rages have been treated by anti depressants. Again, personal choice x

I recently started HRT because I have osteoporosis and have been unable to take Alendronic acid. I’m 69 and have broken 8 bones and my pelvis over recent years… I clearly needed to prevent further bone deterioration. My doctor spoke at length about the pro’s and con’s and we decided to go with oestrogen only gel.

I have no family medical history as I have no information as to who my parents were. However, as I had a full hysterectomy in my late 40’s my doctor said that the cancer risk was low.

hope this helps OP.

Goodness, this is all extremely helpful. Thanks so much to each of you for taking the time to share your experiences. 😍

Of course where it all leaves me is even more uncertain than before, but actually that's helpful too. If I thought before that more research could provide at least some degree of certainty for or against, I'm fairly sure now that that's not how it works. All of you were prescribed HRT based on current research at the time, but then your experiences were all over the map - from poor @Teeshirt who got breast cancer after being on HRT for one year - so sorry, how awful! - to others who've happily been on it for 10-15 years with no issues at all and no plans to quit, and still others like @Petrine who didn’t take it and then developed severe osteoporosis – again, so sorry, and I do hope the HRT is helping.

There really doesn’t seem to be a one-size-fits-all best decision, or even any certainty about what decision would fit me. For the majority of you who responded, taking HRT seems to have been fine, and that’s heartening – but for a not-insignificant number it was not fine at all. Either way – yes or no – it seems to be a ‘take a deep breath, jump in a direction that you think makes sense, and hope for the best’ decision…

The benefits definitely outweigh the risks for me. I was barely functioning before HRT and am more or less back to normal on it. I also have friends who battled through menopause without it and ended up on it anyway for bone density in their 60s.

Definitely do your own research. HRT isn’t for everyone.
Im 50 and been on it for a couple of years. I’m on oestrogen gel and utrogestan now after having an allergic reaction to patches. I feel so much better. I was getting a lot of joint pain, hot flashes at night were unbearable, I had severe insomnia and the brain fog and rage were awful. I literally thought I was going insane

For what it's worth, one of the Drs Ive listened to on podcasts who did a lot of the research has said the breast cancer risk is less than you may think and there are different types and many risk factors.
It's not zero. Nothing is generally zero risk.
The way I looked at it was this
Osteoporosis means you may break multiple bones every time you fall. Every time you're admitted to hospital when you're old, you increase likelihood of secondary infections and breaks mean you have muscle wastage. Which means you're more likely to fall....
Heart disease is twice as likely to kill you as breast cancer.
My family history had more heart issues than cancer and a lot of falls (my mum has broken multiple bones in her 70s) So I figured HRT would address the things I was most at risk of

I'm hoping to avoid it too but will see how it goes.

(I'm not anti-medication generally, and without giving tmi, have a degree and PhD in subjects relevant to the topic, before anyone jumps to conclusions).

I'm 55 and was exactly same. Now on same HRT. I had been feeling dreadful for 18 months and it's made me feel alive again

Hi @ueberlin2030, might you be able to say a bit more about why your research has given rise to a desire to avoid HRT...?