Coming off HRT

[footballerswifey]

I’ve had to come off HRT. I’ve followed my GP’s guidance to reduce it gradually. I’m in my final week now and I feel like I have very low level flu and just want to stay in bed.

Has anyone experienced this? I’ve googled the symptoms of coming off HRT and they are usually things like insomnia and headaches

Sorry you've had to come off it- is this because you've been diagnosed with something where it's contraindicated?

How long have you been reducing it and what were you using (patch, gel, tablets?)

Usually, you'd get symptoms returning- flushes and night sweats etc.

What is the reason you have been told to come of it? I intend to keep it until the day I die.

I was going to ask the same as @cleowasmycat and wondered why you had to stop.

The usual reasons are a serious blood clot, heart issue or cancer.

There is no time limit to using HRT if you've nothing like that going on.

@JinglingSpringbells- yes that’s right. I’m wondering if I should get a second opinion

I had to come off HRT. I did cold turkey.

'Right' meaning your GP has set a time limit (for no reason) such as 5 years?

Or 'Right' because you have experienced some illness that means you must stop HRT?

If it's the first, you should just show your GP this guidance- you can print it off.

The time limits never really existed anyway and the British Menopause Society produced more guidance on it 5 years ago.

https://thebms.org.uk/publications/consensus-statements/bms-whcs-2020-recommendations-on-hormone-replacement-therapy-in-menopausal-women/

Paragraph 8

Arbitrary limits should not be placed on the duration of usage of HRT; if symptoms persist, the benefits of hormone therapy usually outweigh the risks.

what was the reason if you don’t mind saying?

So annoying how GPs are woefully uneducated in this field.

I was experiencing bleeding on the HRT patches I was using. I am now on progesterone tablets and gel and reducing off it. This HRT works better as I’ve had no bleeding. Then I will be off HRT for 6 weeks and a scan is booked in.

@JinglingSpringbells- if you know of any guidance where I could stay on the HRT please do let me know and thank you for the info you provided. I have googled it and can’t come up with anything although

I'm a bit confused.

I am now on progesterone tablets and gel and reducing off it

Have you been told to stop HRT only for a few weeks while waiting for a scan?

Or have you been told to stop permanently and the scan is the last thing you're having done? (And then no more HRT?)

You don't have to stop HRT before having a scan. It's one option - like a trial to see if stopping makes the bleeding stop.

What dose were you on with patches?
There's a lot I don't know from your posts.
How long were you on patches? What type? Are you post menopausal?
Were you on combined continuous or sequential patches (and now gel & Utrogestan?)

If you were using combined continuous patches and you're not post meno, bleeding is very common because it's the wrong type of HRT.

I had bleeding when on everol sequi suddenly. I had to come off it for I think. 4 weeks then had a scan.
They found a cyst on my ovary and I think a fibroid, I can't remember.
Anyway, I have been told not to go back on it until I have seen a gynaecologist.
This started last July.
My night sweats and flushes through the day have come back and I remember didly squat but it's not been too bad.
I had just paid for my yearly prescription too 😂

I just came off it cold Turkey. Due to issues with breasts the breast clinic advised I came off it. Anyway I was in my early 50s and had started peri menopause in late 30s. I’m probably well through it. It was fine apart from the odd hot flush or night sweats. The symptoms in my 30s had been awful.

I tried coming off HRT last Autumn as I was interested if I needed it still, been on it 5 yrs. I’m only on Estrogel (2 pumps) as had hysterectomy 12 yrs ago, I’m 54. OMG I felt dreadful and as you say, awful flu like symptoms. I do have some other chronic medical issues like hypermobile ehlers danlos but the joint pain basically crippled me and the fatigue and flu like symptoms were terrible. Hot flushes started with a vengeance. Now back on it.

That really does sound OTT.
The scan is to check the womb lining and if that looks normal there is no need to stop HRT.
Are you saying that you've been off HRT for a year nearly and are still waiting to see a gynaecologist to discuss a scan almost year ago?
That's ridiculous, to be honest.
I'd see another GP and get your scan results checked by them.

@JinglingSpringbellsI was on the Evorel Conti patches for a good few years. I am post menopausal. They are 3.2mg estradial hemihydrate if that makes sense to you.

The idea is that I need to come off HRT 6 weeks prior to the scan. If the scan results are ok then I presume I can go back on it.

I have heard that some people haven’t had to come off HRT before a scan but I have been told that guidelines insist on this.

Yes, I am now on progesterone 100 mg tablets and gel. I am assuming that is the same as Utrogesten? Thank you

@Bobthepotplant- sorry to hear you’ve had a rough time. I don’t mind the hot flushes but it’s the flu like symptoms I am
definitely not enjoying

Yes I was quite surprised by the severe flu like symptoms & joint pain. However they can be symptoms of my chronic illness which apparently can be aggravated by hormonal changes so I wondered if it was HRT withdrawal itself, or more my hEDS being triggered by my hormonal changes. I’m thinking probably the latter as I can get these symptoms a bit when I’ve totally overdone it. Guessing when I do come off HRT at some point I will have to do it very slowly.

@footballerswifey You asked for some guidance and evidence on this.

Here it is
https://thebms.org.uk/publications/bms-guidelines/management-of-unscheduled-bleeding-on-hormone-replacement-therapy-hrt/

I have copied here the relevant part but read the whole thing yourself.

When to investigate unscheduled bleeding on HRT

• In the absence of risk factors for endometrial cancer, offer adjustments in the progestogen or HRT preparation, for 6 months in total, if unscheduled bleeding a) occurs within six months of starting HRT or b) is persisting three months after a change in HRT dose or preparation.

• If unscheduled bleeding continues in low-risk women, after six months of adjustments, discuss the options of an urgent ultrasound (within six weeks) versus weaning off HRT and consideration of non-hormonal alternatives (to avoid invasive investigations).

• For those women who elect to stop HRT, if the bleeding has settled at a 4-week follow-up, and continued cessation of HRT is acceptable, no further investigations are required. If the bleeding has settled at a 4-week follow-up and there is a preference to restart HRT, offer adjustments in HRT for six months and then an urgent ultrasound if bleeding is heavy / persistent during the 6 months or, is continuing after this interval.

• Offer an urgent TVS (within 6 weeks) if the first presentation with bleeding occurs more than six months after initiating, or three months after changing, the HRT preparation.

• Offer an urgent TVS (within 6 weeks), irrespective of interval since starting, or changing, HRT preparations if a) bleeding is prolonged / heavy or, b) there are 2 minor risk factors for endometrial cancer.

• Offer an urgent suspicion of cancer pathway (USCP) referral to women with one major or three minor risk factors for endometrial cancer – irrespective of bleeding type or interval since starting or changing HRT preparations. Adjustments to the progestogen, or stopping HRT, should be offered whilst awaiting assessment.

You need to read the first and second bullet points which refer to changing HRT and seeing if the bleeding stops, or the option to stop HRT (as you are) if you're still bleeding after 3 months on a new type/dose.

I'm not a dr and you need to discuss this with your GP but if you are not bleeding now on your new type it seems as if you may not need a scan or at least not have to stop HRT while you wait for one.

@JinglingSpringbells- thanks so much for this! I actually googled it a few days ago but couldn’t get my head round it. It makes sense now 💐💐

Although cleared at the breast clinic of anything sinister , the consultant there suggested I think about coming off hrt . I’ve been on it 6 years.

I had a small bleed on sequi and had a scan and hysteroscopy too.

Turns out I shouldn’t even be on everol sequi as in post menopause. The hospital are appalled and I had no idea. Just goes to show we have to advocate and do our own research.

That just shows how the hospital are misinformed too!
You can stay on sequi as long as you want. I've used it for over 15 years for various reasons through a consultant. Friend in her 70s still uses sequi.

All women bleed on sequi- that's the way it works.

I came off cold turkey like a previous poster after almost 20 years as I had to have major surgery. GP didn't put me back on afterwards said it was time I stopped taking it at 63. I wanted to stay on it until I retired.
Awful, I feel like I have electric pins and needles along with boiling hot flushes everytime I lie down. I am most uncomfortable.

I haven’t bled for 2 years so bit of a shock to have one now and womb lining was thickened so sequi is not for me.

I tried coming off a few months ago because I turned 60 and my GP suggested I did. I was an anxious, weepy mess for the week I was off it. I'm now back on because my consultant gynaecologist is happy for me to be. I'll use the recommendations on time limits posted above (thanks @JinglingSpringbells) next time my GP suggests it. I feel great on HRT and hope I never have to stop it.