Not sure I can take HRT or alternatives. Please help!

[MenopausalBodysnatchers]

It's Saturday night, DH is asleep and I'm lying awake, in tears.

I'm perimenopausal.
I've got all of the symptoms of menopause except that I'm still having periods, albeit they've drifted over time from a regular 26 day cycle to a vague 31 day cycle. Now they vary wildly in length, frequency and heaviness.

The latest triple kicker has been almost constant bacterial vaginosis, a sudden and total lack of sex drive and body aches with tiredness that make me feel like I've got constant flu not exaggerating

Although I did speak to the GP about HRT they are reluctant to prescribe as I may have inherited a heart defect on my paternal side. Of course, I can't be sure I have the defect but the only definitive tests can be done post mortem

For alternatives, I can take most but not all vitamins. A smorgasbord of allergies mean I can't risk any other alternatives like black cohosh my GP said.

I've tried vitamin D and other vitamins, to no effect.

I think my symptoms started 4 or 5 years ago.
It seems safe to assume that my menopause will be similar to my DM's she doesn't talk about such things so piecing it all together her menopause took 15 years. I do know that she was still having periods in her early 60s but menopause started about the age I am now.

I can't live another 10 or 15 years like this. I really would rather take my chances with the fatal heart defect.

I know that I can't rely on MN for medical advice, that some posters will be vehemently pro or anti HRT or alternatives.
Trying to set personal prejudices aside, how would you proceed in my situation?

Thank you

I have multiple heart issues and have started on hrt this spring. It has actually calmed down some of my heart issues. Its difficult to advise you without knowing more about what your heart defect could be, but dont rule out a just estrogen regimen if it would benefit you in other ways
There is never anything that is 100% benefit, its always a weighing up of costs and benefits.

Hi OP - I’m a consultant gynaecologist, and specialise in menopause care. It’s very likely you WILL be able to take standard HRT, which it sounds like you would very much benefit from for symptom relief.

Can’t be sure entirely without knowing what the possible cardiac defect might be - and wouldn’t particularly expect your GP to know ..... but they are doing what many do ...erring on the side of over-caution without the full facts. They should refer you to a menopause specialist (see British Menopause Society/Women’s Health Concern website for a list).
I’m struggling to think why a cardiac condition cannot be confirmed or exclude in you whilst you are still alive - that may not actually be the the correct advice. Very few cardiac conditions are inherited. As far as risk of ischaemic heart disease goes, good evidence that starting HRT early is preventative.
Good luck!

Thank you, both of you for answering.

@quince2figs it's ARVC. My DDad had many tests privately, via work insurance as he was going to retire From memory these included; full bloods, ecg, chest x-ray and heart scan as well as other tests. He had all of the results, all clear 1 month before his 60th birthday. He died suddenly of a cardiac arrest as a result of ARVC just over a week after he turned 60, I'm sorry I can't give you the full details from the death certificate or coroners report without looking at them again, so this is my own paraphrasing and I'm definitely not medically trained!

Although diagnostic technology improves all the time he died in 2012 so not so very long ago.

My DUncle, DDad's brother, died in 2011 of ARVC related heart attack. He was 57. I know he hadn't had the same tests that my DDad had but neither of them had any symptoms beforehand and both were still very physically fit.
My paternal DGrandmother survived her first heart attack at age 54 but this would have been in the late 60s/early 70s so my information is sketchy. I do know that she had ARVC when she died some years later.

In recent years I've had blood tests, ecgs, a heart scan, CT scan and chest x-ray. It all looks ok but in the circumstances only positive results are definitive IYSWIM?
The good news is that my cholesterol and other disease indicators are excellent.
There again, so were DDad's post mortem

Please do correct any technical mistakes I have made in my explanation here.

I'm sorry you have heart problems @SeaToSki, I hope you are well and keep well.

Your advice that it's always weighing up the benefits vs risks is good.

Thank you

Thanks for the info. Who told you that oestrogen supplementation would increase your risk for arrthymias? I have a high level of arrthymias myself and no one has mentioned anything about oestrogen being even the slightest bit risky.

Also, as an aside, have you been assessed for an ICD? and have you had genetic testing to see if you definitely have one of the gene types known to be linked to arvc.

Sorry you have to live with this hanging over you. It must be difficult to manage

Oh, also, have you heard about the Kardia. Its a small device you can stick to your phone and it takes a really good diagnostic ecg You can even email the ecg to your cardiologist. Its about 100 pounds on amazon and you need a smart phone or ipad to run it. It was recommended to me by one of the best cardiologists in the USA and they have used my emailed tracings to work out loads of my problems

@MenopausalBodysnatchers

Sadly this is yet another case of a GP not being an expert and not knowing what's what.

I have used HRT for a long time and I'm also a health writer who interviews meno specialists.

Family history of heart issues are not relevant to you.
I've had HRT from a top UK/ world meno expert for 11 years.
I hope I can reassure you.

Heart disease of any kind within the family is not even a consideration. The only no-no is if YOU had had a recent heart attack.

The risks with HRT are blood clots. For women who are young (ie under 60) when they start HRT the risk of a blood clot is miniscule and far less than using the Pill.

In addition, using a patch or gel as HRT means the risk is not there (any more than your own risk without HRT.)

Looking at it crudely, most people die from either heart/ circulation issues or cancer. We all know someone in our families who died from either. My gran and my uncle (mum's side) had heart attacks at a young age. I have never even been asked about this because what is relevant is MY medical history.

(Both my relatives were overweight, had high BP , were inactive and one smoked.)

Also, research shows that HRT appears to be beneficial to the heart. It stops the arteries furring up. ( women's risk of heart disease increases post menopause - loss of estrogen- and goes up to the same a men's risk.)

Estrogen helps keep the artery walls more elastic.

It also means that HRT helps you to feel good so you will take more exercise, stay a healthy weight and therefore be reducing your risk of CVD anyway.

There are people who have unexplained heart attacks

Thank you, really thank you everyone.
Your kindness has made me cry (again).

This morning I've spoken to DH, he's said he will come with me to see a GP. We'll take a list of my symptoms, which is extensive and the NICE guidelines.

SeaToSki the GP didn't mention anything about arrthymias, just simply that a history of familial heart problems excludes HRT.
I'll look at the Kardia, thank you

JinglingHellsBells everything you say is absolutely correct, I agree completely.

I used to be very fit but over the past few years it's as much as I can do to go to work. I've reduced all activities to the point of doing almost nothing more than working.

Luckily, DH is great about it. He's said that if the GP doesn't cooperate this time then we will pay to see a consultant. I'll look to the British Menopause Society/Women's Health Concern for a professional who knows their stuff.

The reason I mention arrthymias is that they would creep up on you if the ARVC was building up to the point of being dangerous to you. You might be able to take a Kardia tracing every week or so and monitor your heart health that way.

SeaToSki I got why you mentioned arrthymias, I know the significance WRT ARVC. Unfortunately my GP didn't.
Kardia sounds like it would be a comfort to me!

I would suggest trying to see another GP as the NICE Guidelines on menopause discuss some of the protective benefits of HRT on the heart and, even those who are higher risk of cardiovascular issues, the recommendations is to use a transdermal (patches or gels) rather than oral forms of HRT rather than not at all unless there is an active or recent clot or recent heart attack.

OP has your GP referred you to a cardiologist? It sounds like they havent and imho you should absolutely be under the care of an experienced cardiologist and have genetic testing done with some serious consideration given to you having an ICD implanted asap.

I'll be honest, BiBabbles I hadn't questioned the previous GP's opinion until now. Not because I'm stupid necessarily, rather because I'm just busy in that way we all are and believed what had been said.

It's only now that the symptoms are making my life intolerable that it occurred to me that there may be an alternative.
Now that I've read the NICE advice I can see that I've been given poor advice.

As I say, I'll make an appointment and we'll go in armed. If we don't get HRT via the GP then we'll insist on a gynae consultation.

SeaToSki no I haven't been referred to a cardiologist either, but that can go on the list too.

@MenopausalBodysnatchers

If you would rather see a specialist privately, there is no need to get a GP referral if you are happy to pay for the consultation (rather than using private health insurance- but be warned- they won't cover menopause per se.)

Most of the private consultants on the BMS specialist list will see you by phoning their PA and making an appt.
Cost is around £250 for 1st appt and maybe £180-ish for rest.

Unfortunately, many GPs have not moved on -educationally- from the WHI HRT study which is 20 years old and which was shown to be flawed. (That study showed an increase in heart attacks but subsequent reviews of the women in the trial showed they were old(er) and overweight .)

Latest research shows the heart benefits from HRT if started within 10 years of the last period.

If you have had tests on your heart such as an ECG etc, surely any problems would have been discovered?

Very few people can’t have topical oestrogen (patch or gel) plus mirena or other progesterone. No clot risk with topical oestrogen and it is overall protective of your heart.
Menopause matters, British menopause society and my menopause doctor are all great websites with lots of info.

That is a com0lex family history, OP, but doesn’t sound like you would even be close to criteria for diagnosis - I understand that does not entirely exclude, though.
Your GP has to refer you under the NHS - even if that is out of area.
Does your cardiologist have a view? Be aware other medical specialities may also not be up to date with current evidence.

HRT likely to be very valuable for you - many sympathies for how you are feeling. I have been there, as many of us have - you WILL feel better!

Again, thank you everyone.

JinglingHellsBells I'd rather save myself the money wrt a menopause consultant . The best case scenario would be that the GP prescribes HRT and, other than some tinkering to get the right one for me, everything is fine.
I'd prefer have the option of seeing a gynae consultant in reserve in case of problems or concerns.

The problem with ARVC as it presents in our family is that it can be difficult to detect on an ecg as my DDad's experience shows.

That's great advice MunchyMunchkin, thank you.

Absolutely, quince2figs I definitely don't meet the diagnostic criteria.
I don't have a cardiologist as such, I was referred and had all of the tests in 2013, not long after Dad's death. Then again, at my own request last year. This was fine by the GP, given the family history.
Given that I'm not currently identified as being at risk cardiology won't request a follow up.

I was just giving you the info on what you might choose. For some women, paying some money is preferable to get expert advice and avoid all the hassle.

Hope your GP can help.

You're quite right, JinglingHellsBells paying may turn out to be the way I choose to go and if I didn't seem grateful for your good advice that wasn't my intention.

In addition to the suggestions, pointers and links I'm thoroughly relieved that no-one on this thread has told me not to be such an idiot or just to pull myself together and to stop being such a drama llama.

As stupid as this probably sounds I've only just pieced together that the overwhelming exhaustion which is the worst symptom, I'm barely functioning is probably not ME, cancer or one of a thousand other illnesses but perimenopause. I'll ask the GP to do blood tests, just in case, but I do want to try re HRT once more. If my visit is successful it will be much easier for me to access my GP than a consultant for further appointments, repeat meds etc, etc.