Thyroidectomy and suppressed TSH

Hi. Although i have been a member since 2010 and feel I have learnt a huge amount from reading the posts this is the first time I've posted anything. I had a full thyroidectomy in 2010, ( I had multiple thyroid nodules and the surgeon made out it was a simple proceedure and I'd just need to take a hormone replacement daily. If I'd educated myself before the op rather than after i might have been a bit more cautious!) Since then have been taking 125 micrograms of levothyroxine daily and feel generally ok. However every year when i go for my bloodtest with the GP I have to fight to stop him lowering my dose as he says that my TSH is dangerously suppressed and I'm risking osteoperosis and AF. My last blood test was in September 2016 and my results were:

TSH 0.04 (0.27-4.2)

T4 19 (12-22)

My response is that i am fit and healthy at the moment and never visit the surgery other than for my annual blood test so I'd rather keep the dose as it is and am happy to live with the risk of something that may or may not happen in the future. At the moment he's agreed to leave thins as they are but i'm already starting to feel stressed at the thought of the inevitable "discussion" i'll have to have with him at my next appointment in September. They never test my T3 so I dont know how that is.

Sorry I'm rambling. My question is wouldn't all people who have had a thyroidectomy have a suppressed TSH if they have optimal levels of T4 in their body for their own needs? I no longer have a thyroid and cant make my own T4 so why would the pituitary gland need to produce TSH? Or is there something i don't understand.

i would be grateful for anything I can say to my GP to persuade him to leave well alone and not mess about with my doseage

4 Replies

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  • I believe for people who have had a thyroidectomy it is preferable if TSH is suppressed. They try to frighten us into submission by telling us our bones will go and we'll have heart attacks.

    What would give a better idea of the circulating hormones is a Free T4 and Free T3 and I'll give you a link and you can see the reason, which is that we have to convert levo to T3 (liothyronine) as it is the only Active thyroid hormone required in all of our receptor cells. T4 (levothyroxine) is inactive and has to convert to T3. If we don't do so efficiently or dose isn't high enough we don't have enough T3. If GP wont do these (the lab usually only does TSH and T4) we have private labs which will do so.

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

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

  • Boo57,

    The pituitary gland doesn't know your thyroid is missing so TSH is poured out until sufficient T4 is detected from the Levothyroxine you take. Suppression of TSH is due to the dose of thyroid replacement you take. Some people need TSH suppressed to have decent levels of T4. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    I had a thyroidectomy in 2012 and endo wants TSH suppressed around 0.05 but isn't happy that it is <0.01. I had 3 dose reductions which dropped FT4 and FT3 considerably but didn't budge TSH. Last year, and in April this year, I refused to reduce dose further and have said I will buy thyroid meds on the internet and self medicate if my prescription is reduced without my consent.

  • I had one in 2009 still have to get blood work done and check my weight , blood pressure.

  • After my TT I have no idea what my TSH or anything else was for the 8 years I was on levo and permanently ill. Since starting on NDT it is 0.05 and nobody complains, possibly because the doctors all know what sort of an earful they will receive if they criticise my actions. They know I would not accept their pitiful arguments about osteopyrosis (?) etc, when they are fully aware that only those who are ignorant of the truth will accept it as being true.

    Tell the doc you are quite happy on what you now get and can guarantee that you will become ill if you follow his advice. Ask him for convincing evidence, not simply some "expert's" opinion, of the bad things that will happen to you if your TSH is "too low" and see what he comes up with.

    Congratulations that you do well on levo only after a TT, I suspected there was somebody, somewhere who was successful.

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