Menopause rant

[MrsHemswoth]

I have been on HRT under a meno specialist doctor for 5 years. I suffered an early menopause with debilitating symptoms for years before I begged to try hRT aged 45.

My dose has been titrated and adjusted according to my symptoms and monitored by blood tests at least annually too.

Before I became stable on my HRT I had been investigated for palpitations, given anti depressants, diagnosed with panic disorder, Anxiety, arthritis, migraines, vertigo.., the list goes on!!

I feel so much better, stronger physically and mentally (not on AD's now either) - no headaches, no palpitations, no joint pain, no vertigo - incredible!!

BUT why is it I was hauled into my GP surgery yesterday to see a pharmacist to try and scare me absolutely sh*tless about cancer and a list of other things.

Ever since the new BMS guidelines have come out it seems that they are all terrified of prescribing anything off license - even if my meno specialist writes them regular detailed letters including my symptoms, blood tests etc etc??!

Every time I log into the facebook group Menopause matters they give their standard, "doctors are under no obligation to prescribe outside of licensed doses" etc etc - it's like they have forgotten who they are advocating for??

They come across as scary and un- feeling and scare women.

I come from a medical background myself which is why I feel so aggrieved by this...

If a consultant wrote to a GP and asked them to prescribe an unlicensed dose of a drug and wrote a long spiel about why along with the fact that as GPs , they are not specialists, BUT the Consultants are!! I would expect them to generally prescribe it or if not, contact them to discuss it??

Why is it that it's okay for GPs to just tell me they might not continue to prescribe some thing that's been helping me hugely?

Do Menopause Specialists not hold the same kudos or importance as other Specialists Doctors?

And as for menopause matters, I'm sick of their shaming and scaring of people who are genuinely suffering dreadfully, it's like MM is an offshoot of the BMS!

The reason there is insufficient research to discover whether these doses are safe is because no one has bothered to do any. Maybe I can wait 10 years to discover while I'm suffering....!!!

In my case I'm a poor absorber - if my surgery bothered to read my letters etc they would see that!

I have a thyroid issue and my doses are adjusted annually. Because it's a hormone!

My mother in law has recently been prescribed a drug off licence by a hospital consultant - and her GP prescribed it!

Last rant -do men who have low testosterone require this amount of absolute shaming and gaslighting??? Or are their symptoms, blood tests and levels adjusted accordingly with zero fuss and questions!?

I rest my case!!

Wait until you've had breast cancer, then trying to ask for HRT. You are treated as though you are requesting to commit a serious crime against humanity (and that includes requesting topical vaginal cream!)

Oddly enough, BC survivors can also experience debilitating menopause symptoms and we get a blanket " no" to HRT each time. Have they done any real meaningful studies on the risks of allowing women to take HRT after cancer? I doubt it.

Totally agree with you re: MM, hence why I ditched that group yonks ago!

The approach to treating menopause isn't this county is poor. You hear of women " begging" their GP for HRT. Why the bloody hell should they beg FFS?? Why?

Recently I wanted to switch from imvaggis pessaries to Ovestin cream. I have to book a review with my GP!!
Don't worry, I will buy my own!

The testosterone situation for women trying to obtain it, is dire!

I hear everything you say and agree.

Sadly I am suffering with secondary breast cancer, no ovaries and on hormone blockers. No one will help me with my debilitating menopause; oncologists just shrug and say " take your meds, or face an early death!"

I feel stuck ☹️

Can you be more detailed @MrsHemswoth ?

It's not clear if your consultant is prescribing off-licence - and if so, is this just the dose? (I get the feeling they're suggesting a very high dose of estrogen?)

You may want to check this out but my understanding is that once a GP writes the prescriptions for you (even if they are following a consultant's guidance) the GP 'inherits' the legal responsibility for your care. So if there are any serious mishaps, they are held responsible.

If you are seeing a private consultant for menopause, you can ask them to prescribe for you and pay for your HRT as a private prescription. Your GP doesn't need to be involved.

Not all 'menopause specialists' are consultants. They are often GPs with some HRT or meno training but they aren't consultant gynaecologists (so even less reason for GPs to prescribe.)

I'm playing devil's advocate here a bit. I'm not unsympathetic to what you're saying.

When you refer to Facebook Menopause Matters is this the same MM website?
Some of the specialists who run MM also write for the BMS and help produce their reports.

Have they done any real meaningful studies on the risks of allowing women to take HRT after cancer? I doubt it.

There is research into this, yes. The medical papers are out there.

It's very individual and you'd need to see a consultant, who was very specialised in this, probably privately, to make any headway.

There is an argument for quality of life over quantity, and there are women using HRT who have had BC (Kirsty Lang is one and talks about it online in an interview.)

I'm not talking about menopause specifically but I do know that in all kinds of fields, for men and women, GPs do not necessarily just prescribe something because the specialist says so if that thing is off license or not recommended by NICE or by local guidelines.

Despite the fact that I as a specialist fall foul of this sometimes (GPs have refused to prescribe things I think are reasonable treatment) on the whole I do support them.

The reason is that there is a whole lot of dodgy private medicine out there and I see people being harmed by dodgy private specialists who prescribe things that are bizarre or actually harmful quite a lot. Unfortunately they have a financial incentive to do so if the patient wants them to and in many fields the consensus is sufficiently broad that you will find someone to prescribe what you ask if you are prepared to pay.

The GP is an independent practitioner who needs to answer for the risk of anything they prescribe (they can't just say he told me to do it) and when they do so off licence or against guidelines they expose themselves to risk as the patient may turn round later and say 'why did you prescribe that? I was not adequately informed of the risk and now I have cancer'

I always thought my mums fatal breast cancer at a young age was contributed to by HRT. She thought that too. I know that might be wrong and it can't be proven one way or another but if we were the kind of people to shout and complain perhaps we might have done? There is a search after meaning very often when something tragic like that happens and many people do look to place blame.

When you've got secondary BC, there's no chance of HRT @JinglingSpringbells. You are left to suffer and feel guilty for even raising the question.

In my experience men with low testosterone rarely get a prescription, the guidelines don't seem to support it.
GPs are mostly refusing to prescribe for ADHD under shared care agreements now (and the waiting list is 5 years or more in most areas).

Menopause Matters is the pits. I left years ago after being hounded by one very well known member there just after being plunged into surgical menopause. The moderator there is an idiot too.

@ThePure OP hasn't said if the consultant she saw was NHS or otherwise.
It would be doubly frustrating if she was referred by her GP to an NHS specialist .

It’s all pretty shit, they just don’t take it seriously. I’m under a specialist menopause Dr privately, I gave up with the G.Ps, they just don’t have the skills when it comes to hormonal treatment.

I don’t drink and have never smoked so have a lower risk of certain cancers. I choose to persist on getting my HRT tweaked for a better quality of life, and will keep on pursuing it.

Hi, my menopause specialist is at the Newson Clinic, she is an NHS GP who has had additional training so not technically a consultant...worked for NHS for over 30 years but now just specialises in menopause.

I get that the Gp's don't always prescribe what's suggested however with expensive or experimental products especially and it's a lot more complex than my initial rant suggested!

I just feel like there seems to be a blanket approach to prevent women getting individual treatment.

I really didn't want to go private to get this but I felt it had no choice and still don't. The thread of the doctor taking it away based on these guidelines feels very unreasonable.

As I said, I had my dose increased very gradually over a few years and tried different products and along with blood tests and my symptoms it was clear that despite being on a "larger than licensed dose", my skin does not absorb it as well, hence I need a bit more. It seems logical to me!

I feel so sad that ladies who have had breast cancer are struggling so much too, this seems dreadfully unfair.

Interesting to see others have also had enough of MM 😜! I'm going to leave group!! I feel some of those women have been dealt with in a very I compassionate way!!

Oh gosh... it's actually the menopause support network on Facebook I was referring to 🤦‍♀️!! Oops! I think I was confused as their slogan is "make menopause matter"!

.... which I am totally onboard with!! Just not keen on the total obsession with stressing women out if their specialist dates to suggest a slightly increased dose!

*dares

I assumed it was Newson .

You have the option to get your prescriptions from them, along with monitoring, without involving your GP at all.

I'm completely on your side on this but are you aware of the 'other side' which is behind your GP's behaviour?

As a PP posted earlier, once a GP provides your prescription, they are legally responsible and liable for the consequences. So, in theory, if there was any unwanted outcome, they'd be held liable.

You may be aware that there has been 'veiled' criticism along with other private clinics (never named) for prescribing very high doses of estrogen and that such doses can cause endometrial hyperplasia. This was in the media a while ago and was substantiated by a BMS report.

This is what's in the BMS report on the use of progesterone as part of HRT and how doses of it should be adjusted.

There is also a difference of opinion on the value of estrogen testing. The clinical evidence (in research) is it's inaccurate and needs 24 hour monitoring, which is impossible. My consultant won't monitor it and we've discussed the reasons.

With high doses, you'd usually be having an annual scan arranged by the Newson clinic, to look at the uterine lining (the BMS actually suggests every 3 months for high off-licence doses) although this is more important for older women on HRT who are post menopause.

Please don't understand me. I really appreciate how you feel but your GP is protecting their professional interests even if it feels unfair.

Can you manage to get your HRT privately and then you won't have to bother with all of this?

I'm an NHS specialist in a different field and occasionally GPs who have referred the patient to me have refused to prescribe things that I recommended if these are off label/ outside NICE guidelines or blacklisted by the ICB. I rarely prescribe drugs that are any of those things in fact but I have learned to discuss it with the GP first before raising any hopes.

OP has clarified that it's through a private menopause clinic. I assume they thought a letter sufficed but it's understandable why the GP isn't completely on board, long term.

Thanks for offering a different perspective, am I have calmed down a bit now, it just feels so massively difficult as a patient (I work in the medical field myself).

I guess I could pay to get it from Newson Health however it's so much money on top of the money I pay already and our financial situation is not great. I already pay for testosterone, follow up appointments and blood tests . I don't want to put myself at extra risks.

As a patient I feel sad and frustrated that clinically i feel well, the best and most stable I've felt in 5-10 years yet this side of the picture is Ignored!!

So would I bet better off as I was on 4 pumps of Gel with excruciating joints, fat, fed up, anxious and panicky, emotionally labile, hair thinning, vertigo, not energy -this was me and I almost lost the will to live... but I'm being made to feel like this would be better?

It's just really unhelpful and makes no sense!!

I really understand how you feel but at the same time it's clear why your GP is reluctant to follow the guidance of another private GP. Your GP would be responsible once they take over the prescribing. It's not personal aimed at you but the GP is protecting their professional liability. They are likely to be careful following the BMS report showing there have been more cases of endometrial hyperplasia (which can become cancer) as a result of these very high off-licence doses. That's why they suggest regular scans.
Is Newson making sure you have those?

It's not always possible to mix private treatment when it's off-licence and going back into the NHS , for this reason.

Have you had investigations into other things like your thyroid and autoimmune conditions that could also be a factor in hair loss and joint issues?
Not everything is always linked to estrogen.

Sadly, I think you've either got to suck up the costs, or go back to 4 pumps but make sure all other possible causes have been ruled out. OR see a consultant who also works in the NHS (but does private appts too) who is happy to work with you and then your GP may feel happier following their advice.

I've been on HRT for almost 5 years and stable on current regimen for 2... it took a while to get there and a lot of tweaking and monitoring...

Since getting to this point my hair is better, and regrown!

I have zero joint issues

My anxiety is fine!

I feel like the old me FINALLY!!

I have thyroid problems dating from early 20's (overactive) now thyroidectomy and stable and monitored annually.

I have a blood condition that requires having 6 monthly in depth blood tests too so I know I don't have low B12, liver and kidneys fine.

I absolutely know so many of my symptoms are due to menopause because nothing else has change apart from ensuring my hormone levels are in the acceptable range.

This all just feels so wrong - I absorb it badly, so the licensed dose does adequately get in hence requiring slightly more. It's so disappointing that people have these views!

Surely an individualised approach should be used?

Telling me to have 4 pumps and suck it up sounds like medical gaslighting to me 😳

*doesnt (my typing 🤦‍♀️)

I share your pain. I started writing a long post about my own experience but I bored myself!

I've had to go private to get HRT, my GP has taken it on subsequently but only at 50mg and won't go to 75mg.

She discussed that Testosterone might be helpful, agreed to a baseline blood test but says anything in the reference range (0.101 upwards...) is OK so I'm paying for that privately as well.

I'm fortunate that I can afford to go private, nobody should have to though. My plan is to get to a settled position with HRT and then go back to the GP again to get it prescribed.

This must change, this that follow us deserve better

I hear you OP! I’m also a poor absorber. I have oestrogen implants now on the NHS (after a 3 year wait where I was having private treatment). My meno specialist (Consultant Gynaecologist, one of the most highly recognised in the UK) has also prescribed Cyclogest which is off licence for HRT. Despite having written to my GP with the justifications, I still have to beg for it every time I need a repeat. There is only one GP in the practice that will prescribe it without a bloody public enquiry. It’s so frustrating. I sometimes feel like giving up, but with the progesterone I can’t have the oestrogen. My symptoms are very similar to yours, after surgical menopause in early 40s, and I just cannot function without it. This would never happen to a man.

From what you first posted, it was a pharmacist you talked to you - not your GP.

Have you actually been told you can't carry on with more than 4 pumps?

A pharmacist doesn't have the authority to change your dose.

No one (including me) is saying that you shouldn't have more than 4 pumps, but if it's not within the licenced dose, on the NHS, and your GP objects, the only option is to carry on paying or try to see an NHS consultant (whose opinion may carry more weight.)

Have you ever been in touch with the Daisy Network?
They are a support charity for women with POI.
I know it's 5 years since you started HRT but you may get support on that group (and they have access to consultants who help run the group) for advice. There is a small annual fee to join the charity.

https://www.daisynetwork.org/

OP, did you see this in the news, I don't have a view, but I do think it's important for regulators to probe the practice and safety of all clinics.
I wonder if your GP was aware of these issues on the grapevine and that's why you got hauled in?
BBC News - TV menopause doctor concerns probed by watchdog
www.bbc.com/news/articles/cp8e5y4e83lo

Yes it was a pharmacist at the practice, and she was asked to see me by the GP. Thanks for all of your responses, really useful and sorry to hear similar stories from others ☹️, I should have looked into POI at the time as my mum had it in her late 30's although I asked GP at the time aged 30 (when I was under investigation for palpitations, vestibular migraines and vertigo along with hair loss and panic attacks) who checked my hormone levels and they were okay apparently? So I assumed it was nothing to do with it)....

As I said from my original post, this is just a rant really, I'm aware that there is a lot of read tape in nhs and nuance to the GP responsibilities etc, it just makes me feel sad that there does not seem to be a patient centred approach to managing menopause, it appears it's a blanket approach and pot luck whether the GP practice will listen to the patient at all