Long term HRT: My story on HRT started when I... - Thyroid UK

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Long term HRT

victoriablue profile image
16 Replies

My story on HRT started when I went into early menopause at 37.

I am 74 now my periods stopped at 44 that was when I started taking Tibalone.

I was so unlovable feeling awful and hot sweats panic attacks so went on HRT.

Forward 30 years after trying to come of it 10 years ago and relapsing back to all above symptoms stayed on it till last month.

I finally stopped it and feel fine. Only one doctor queried how long I had been on it 😭 the rest just kept the prescriptions coming. Don’t know what it has done to my body but I was so awful to live with.

Anyone else taken it long term?

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victoriablue profile image
victoriablue
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16 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Do you also have a thyroid problem?

Stopping HRT may mean you need to adjust Thyroid medication

Full Thyroid and vitamin testing recommended 6-8 weeks minimum after any significant change in medication or lifestyle (or dose or brand change of Levothyroxine)

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

No that long! About 10 years, but bioidentical

ATVMWF profile image
ATVMWF

Hi Victoriablue,

Pleased to hear that you have experienced no adverse after effects to coming off HRT patches, especially as you have been on them so long. Your doctor must be very amenable if they were happy to keep repeating the prescription, that is not generally the case, they tend to want to get you off HRT after your late 50's now. If the (generally male) doctors had to suffer some of the crushing symptoms they probably wouldn't be so quick to dismiss women's reluctance to give up HRT.

In answer to your query about whether anyone else has been on HRT for as long. I can say that I am aware that my friends mum was until she was 75 and she did not appear to suffer any adverse effects.

Personally, I took HRT long term and came off it in August this year at the insistence of my doctor, who basically said he would not give me another prescription. I have to say I was not happy about his decision not to renew my prescription. I took it from 39, after a hysterectomy and am now 63. I weaned myself off it extremely slowly, reducing the amount of patches applied monthly from March onwards( 4Xtwice weekly-3xtwice and so on). From the end of Sept I have felt dreadful and have had constant night sweats, up to 4-5 a night and hot flushes, then the usual freezing cold that you experience with hypo. Feeling pretty miserable and cannot sleep. I did not expect to feel so bad considering I weaned myself off deliberately and slowly. I would be interested to hear if others have experienced similar symptoms, or suggest why a slow wean off HRT could be causing such issues.

userotc profile image
userotc in reply toATVMWF

By the way, my mum has never been diagnosed with thyroid disease - have you/does it matter? Her TSH been ~1-2 but plans to have fuller test done.

ATVMWF profile image
ATVMWF in reply touserotc

Hi userotc,

Yes, I am hypo + have Hashi's. I don't think coming off the HRT and having ongoing issues with thyroid treatment/conversion helps but it is hard to distinguish what is causing what and frankly, doctors just aren't interested.

victoriablue profile image
victoriablue in reply toATVMWF

Not uncommon mine were the same had a bad knee Bakers cyst not interested. Not sorry just felt I was a nuisance.

victoriablue profile image
victoriablue in reply toATVMWF

Hi no I don’t have thyroid problems but I had the same as you did trying to come of it approx 10 years ago don’t know if I said I am 74 now and amazed I didnt have withdrawal.

My friend had a hysterectomy and was on it till 2 years ago.

I did say to her hope I don’t start with hot sweats again and all the side affects her doctor told her no you won’t get them at 73 you have grown through it so to speak lol.

Hope your ok now I am touch wood.😀😀😀

ATVMWF profile image
ATVMWF in reply tovictoriablue

Sadly, still experiencing all the horrific symptoms and as many are similar to thyroid it is hard to distinguish what is what. For the 17th night on the trot I woke at just at 3 a.m. bathed in sweat and didn't nod off again until after 7:30. Absolutely exhausted!

Remind me to come back as a man next time...……….

victoriablue profile image
victoriablue in reply toATVMWF

Oh no I really feel for you. I agree with you coming back as a man. The only doctor that went close to taking me of was going to look up the affects taking it long term so I never went see her again.

All the don’t take it after your late 50s was not a question when we started it. I was just glad to get relief.

Let me know how it goes. 😭 Rose

ATVMWF profile image
ATVMWF in reply tovictoriablue

I have to say I have tried everything in an effort to get a full nights sleep...alcohol (useless), warm bath ( made me even sweatier), lavender pillow (also useless), hubby massaging me (nice but useless and gave him other ides which frankly are far from my mind). I have had to stop driving car in the last couple of days as I recognize I am unsafe as suffering from sleep deprivation. Clearly I cannot go on like this but I have given up on doctors, especially as referral from G.P. to sleep clinic has advised that waiting list is expected to be in excess of 20 weeks!

victoriablue profile image
victoriablue in reply toATVMWF

Wise give driving up till you feel up to it again.

As for the massage 😂😂😂 Lol x

ATVMWF profile image
ATVMWF in reply tovictoriablue

What can I say...MEN!

userotc profile image
userotc

I don't know the answer to your question but my mum has very very similar issues to you. Her ages when put on and off hrt are almost identical also. But she was on oral until 62 then taken off after having cancerous kidney out before GP put her on patches following menopause symptoms. She's weaned off those now but symptoms have returned.

victoriablue profile image
victoriablue in reply touserotc

Hope things settle for your Mum I have tried twice before with no luck went back to them each time after 10 days. But this time ok 😀 might be age related 🤪🤪 lol..

I had a hysterectomy at the age of 40 and was on HRT for the next 23 years. Now 76 and watching my daughter repeat the process

victoriablue profile image
victoriablue

My Mum was the same as me looks like hereditary same genes.

Awful problem never had a hysterectomy would have thought having one would solve it all.

I haven’t got a daughter have a son so can’t say if history would repeat.

Hope something comes help these women soon. Rose

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