Confused and scared!

[Safina7]

Hi I'm a 38yr old women who has hypothyroidism uterine fibroids and has recently been diagnosed with adenomyosis. I have been advised to have a hysterectomy but am scared of hrt reacting with my levothyroxine any experiences with levothyroxine & hrt would be so helpful to me right now?

[Rapunzel]

Hi Safina7

I am sorry you're feeling scared. Are you in the US ? There seems to be a propensity that side of the pond for hysterectomy. Are your symptoms severe ?

I have no experience of taking both these meds together, but hope that you have noticed that your question has 'Related Posts' on the right hand side of your screen which shows you are not alone in asking - the responses to those questions may be worth a rifle through.

Welcome to the forum

[Safina7 in reply to Rapunzel]

Thank you so much for your positive words.

No I'm from the u.k. unfortunately we don't have much help with thyroid in this country & g.p's are not very good with the condition here you have to beg before you get to see an endocrinologist.

[Marz in reply to Safina7]

I stayed well way from Docs whilst suffering with what could only have been fibroids in my early 50's. At 59 I was diagnosed with Hashimotos here in Crete and still have my uterus I personally think it is yet another thyroid problem. Hang in there if you can

If your thyroid meds are optimal then you will not be needing HRT - from what I have read ! Do you have any thyroid test results you could post - with their ranges .... thanks.

Christiane Northrupp - Womens Bodies Womens Wisdom - a great book written a few years back but still relevant today. There is a website in her name ....

[Jazzw in reply to Safina7]

Most of us here are UK based - we share your pain.

How old are you, if you don't mind me asking? Fibroids do eventually shrink at menopause. Surgeons can be in a tearing hurry to do hysterectomies (they really do like cutting things out) but eventually Mothe Nature herself does take care of the problem.

[Jazzw in reply to Jazzw]

Oh doh, just seen you're 38.

Ok, next question. How much levothyroxine do you take? Do you feel optimally medicated?

[Safina7 in reply to Jazzw]

I take 125mg my results im told come back ok although I feel I would get better feed back from an endocrinologist than my g.p. but I have been refused the request of seeing one by my g.p.!

It's my adenomyosis that is severe that is why my consultant has suggested a hysterectomy.

[humanbean in reply to Safina7]

I wouldn't pin my hopes on an endocrinologist. Few of them have any knowledge of the thyroid and they mostly specialise in diabetes.

[Safina7 in reply to humanbean]

Wow! No hope then! Seems like if you don't do it yourself you don't get! People in jobs they don't have the qualifications for!

[humanbean in reply to Safina7]

Louise Warvill (who works for Thyroid UK, the charity which runs this forum on HU) has a list of endocrinologists and doctors, both private and NHS, who have helped someone, or possibly multiple people, with thyroid problems. You could ask for a copy of that list to be sent via email. You never know you might strike lucky.

Louise's email address is :

[e-mail]

Good luck.

[Safina7 in reply to humanbean]

Thank you so much very kind of you I definitely will contact her.

[Jazzw in reply to Safina7]

OK. Well, there definitely seems to be a link between hypothyroidism and uterine problems. It would be well worth getting hold of your latest thyroid blood test results because we often find here that people struggle with other health complaints because their hypothyroidism isn't being sufficiently treated.

Your doctor should let you have them. If you do decide to get them, post them here for advice. It wouldn't be the first time that someone's been told they need surgery when all they really need is more thyroid hormone replacement.

[Safina7 in reply to Jazzw]

Thanks I will do,

But I have had an mri & it looks pretty bad.😟

[Safina7]

Thank you for your reply don't have any results as yet but I was initially hyperthyroid had radio iodine therapy & have been hypothyroid since.

[Clutter]

Safina7,

If you take oral HRT at least 4 hours away from Levothyroxine there shouldn't be much interaction. There's unlikely to be interaction with transdermal patches.

__________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Safina7 in reply to Clutter]

That sounds positive thank you I am due to see my doctor tomorrow hopefully get some answers.

[bluebug]

Has a gynaecologist discussed other procedures with you apart from a hysterectomy? If not you need to find out what they are and ask why they aren't suitable. In the UK woman are told about these choices - nhs.uk/Conditions/fibroids/...

- patient.info/doctor/fibroid...

Simply because having a hysterectomy itself can cause other issues - hysterectomy-association.or...

[Safina7 in reply to bluebug]

Unfortunately my condition is past the point of other treatments they offered me pain relief & to hold on as long as I can i have two children 19 & 17 so I'm not bothered about fertility as my family is complete but would prefer not to go through menopause too early in life & my biggest concern is my thyroid condition getting worse after the hysterectomy.

[humanbean]

I know you are confused, and suffering at the moment, but I think you ought to think very carefully about the future, before agreeing to anything.

If you do a search for information on "hypothyroidism and uterine fibroids" you can find a lot of links on the subject.

fibroidsecondopinion.com/20...

You can also find a lot of links on the subject of "hypothyroidism and endometriosis", "hypothyroidism and adenomyosis", and "hypothyroidism and ovarian cysts".

My understanding is that adenomyosis is a sub-type of endometriosis found in the muscular walls of the uterus.

I had endometriosis + adenomyosis + fibroids + lots of ovarian cysts. I also had untreated hypothyroidism - I was told it was borderline and didn't need treating. I was one of the thousands of people who fell through the cracks - my TSH never got very high despite low in range Free T3 and Free T4. (This was back in the 1990s.)

With the benefit of hindsight I would say that you should move heaven and earth to optimise your thyroid treatment and your minerals and vitamins before allowing a surgeon to operate. You can always change your mind and have surgery later. I've read stories on the internet of women who shrunk fibroids, got rid of cysts, reduced the severity of endometriosis and adenomyosis, by improving their thyroid treatment. But obviously there are no guarantees.

I didn't know any of this in the 1990s when I was in my 30s. I had surgery to remove everything and got reduced pain after surgery - for about two weeks. HRT brought the pain back because it kept endometriosis alive. (It is virtually impossible to remove it all even when organs have been removed to get them out of the way.) As a result I was never able to tolerate HRT.

Luckily for me I had a bone density scan about three months after my hysterectomy. My result was absolutely brilliant. Fast forward thirteen years to my next bone density scan - thirteen years without HRT or any sex hormones - and my bone density had dropped to below average for my age. I've shrunk in height quite noticeably and my back is starting to collapse into a dowager's hump. And at the time of the second bone density scan I still hadn't even reached the average age of menopause for women in the UK.

You might find this site interesting :

hersfoundation.com/

[Safina7]

Thank you for your reply I will look into what you suggested & yes won't be opting for surgery until I have exhausted other avenues.

[Hidden]

Hi I was 42 when I had my hysterectomy due to fibroids, I was flooding for a long time so it wasn't a rash decision. Get as much information as you can, other alternative treatments before you go ahead. I never regretted my op but I wasn't hypo at the time. I did take HRT till I was 60 and was on levo from 57, I didn't experience any problems with it. However I did have horrendous flushes as soon as I came of HRT and still have them now four years later. Good luck with whatever you decide.

[Safina7 in reply to Hidden]

Thank you for your advice & yes I will be looking at alternative treatment if it is possible.

[Hidden]

I take NDT and HRT with no problems. I take NDT first thing and at lunchtime and then HRT at night.

[Safina7 in reply to Hidden]

Sounds positive thank you.

[Hormone-mess]

I'm forty and in early onset menopause. I currently am on HRT of estrogen, testosterone and progesterone as well as levothyroxine and liothyronine. I had to increase my levothyroxine shortly after starting HRT. I take the two hours apart and everything is fine. Starting HRT was one of the best decisions because my hot flashes ended almost immediately and I also started sleeping through the night.

[Safina7 in reply to Hormone-mess]

Thank you for sharing your experience it gives me hope for the future.