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[renee]

Hi ladies,

I have an under active thyroid and have taken the same dosage of Levothyroxine for 11 years with no problems. I started on Tibolone about 7 months ago which was prescribed at a Gynae app at my local hospital, I have fibroids and was getting pain, sore joints, forgetfulness etc

About 5 months ago I had to get my thyroid bloods checked and it had totally went out of whack, Iv had to half my dosage of Levothyroxine! Now, I feel awful and thyroid bloods are reading normal on the lower dose. Past month Iv had a lot of facial spots, I mean a lot and also pain in my tummy and a few spot bleeding....like I could start a period.  Haven't had a period for well over a year. Also very low mood and insomnia. I phoned my GP and he's confused as to what to do!!

I have an app with our Gynae doc on Friday.....my GP isn't sure if the Tibolone is affecting my thyroid results. Now I'm confused???

Anyone any ideas or advice please. 🤔🤔🤔

[Salad]

Poor you!
Nothing worse than not knowing what is going on with your body 

I have no experience of thyroid problems but feel your GP is the right one to direct you to a Specialist - if the Gynaecologist rules out a link to a Gynaecological reason then maybe a thyroid Specialist would be helpful.

It might be worth asking a Pharmacist if there is anyway the Tibolone is affecting your thyroid.

[Mary G]

I'm not sure if this information will be of any help to you but I can tell you that in my case, more oestrogen means better thyroid function.  I have never had particularly high thyroid readings but when my oestrogel levels were low, they were getting close to the borderline but now my oestrogen levels are high, the thyroid results are all much lower and well within range.  I always have the whole lot tested i.e. T3, T4 free and total and also TSH.  It could be that your thyroid is functioning better since starting Tibolone if you have been able to reduce your dose of Levothyroxine but I would have thought it would make you feel better. 

Could it be that the HRT is helping your thyroid function but doesn't agree with you in some other way?

[renee]

Thanks for your replies ladies....I remember feeling like this a few years ago on another HRT preparation. Gynae thought I was possibly getting too much estrogen as my own might have kicked in so was told to stop.

Think the symptoms of too much estrogen or too low are simliar so its pretty confusing. Iv decided not to take anymore Tibolone until I see the gynae doc on Friday. I dont know what else to do to be honest as I cant stay like this.

Thanks ladies xx

[Hurdity]

Hi renee

What hormones/ markers did you have measured? According to the product info there is an interaction between Tibolone and the levels of some of the thyroid hormones, although it says it's only minor:

"Treatment with Livial results in a very minor decrease of thyroid binding globulin (TBG) and total T4. Levels of total T3 are unaltered. Livial decreases the level of sex-hormone-binding globulin (SHBG), whereas the levels of corticoid binding globulin (CBG) and circulating cortisol are unaffected."

Decrease in TBG would increase levels of Free T4 and T3, I would have thought, which are the biologically active part? Someone can correct me here!  Were you experiencing symptoms of overactive thryoid when you went to the doc to have levels measured? My understanding of thyroid function (as with oestrogen levels) is that it is not levels per se that determine how you feel - after all it is just a reference range - and if you are not feeling well with particular results then so be it ie docs should be going on symptoms not absolute levels! Maybe your levo dose was reduced too much and you need to tweak it until you feel well again - while remaining on the Tibolone? There are one or two on here who are expert in thyroid issues and may be along although people are pretty busy at this time of year as you can imagine. You could try asking on the thyroid UK board about interpretation of your thyroid results maybe?

Good that you are seeing a gynae on Friday because any bleeding beyond 6 months of a continuous combined HRT (of which Tibolone is sort of in this cateogry even though not exactly HRT in the same way as the usual preparations) should be investigated. Sounds like you need to see an endocrinologist too - but as Salad says - hopefully the gyane will make the appropriate referrals and investigations if necessary.

Do let us know the outcome of your gynae visit.

Hurdity x

[renee]

Huridty....this is so helpful to me. You are a wealth of knowlegde!

Takes a bit of reading again as I find it hard to understand how tsh and t4 work. My tsh spiked in June to 23 which alerted my doctor....this was around the same time I started Tibolone. Something is definetly off with me, today I feel very old and fatigued. My skin is very dry and hot too.

I will keep you ladies updated and thank you all so much xx

[Hurdity]

Hi renee

First of all - thanks - but I really know very little about thyroid function - my knowledge is very rudimentary and you will need to ask someone with more expertise.

Also I'm a bit confused by what you say - you said your TSH had spiked to 23 and therefore you had to reduce your levothyroxine and as a result your (underactive) thyroid symptoms have returned?

For TSH to spike it surely means that your thyroid is not functioning properly  ie insufficient thyroid hormone from whatever source ( was T3 and T4 measured too?) and therefore you would need to increase not decrease your dose of Levo? This would seem to be opposite to what is implied by the prescribing info - as I said I really do not know enough about this and I would ask on thyroid UK - the knowledgeable members about thyroid aren't around at the moment.

Good luck with your appt tomorrow Hope you manage to sort it out so that you feel better!

Hurdity x