Extreme hypothyroid... It's not all bad!

Hi all, I was diagnosed with hashimotos about ten years ago but never needed treated for it.

Over the last few months have been feeling pretty under the weather and thought I had a bug - cold, tired, miserable etc.. Went to docs about a month ago who did some blood tests. Got called back the next day as turns out my t4 was 1 and tsh 267!!! Was referred and

went to see consultant yest who was pretty shocked/impressed I've been coping with such crazy levels!!

I've started on Levothyroxine and think they're going to wean me on to a high dose (only on 50 at the mo). Feeling better already (and started feeling better from day one of taking them..) not 100% yet but it's early days. So much worrying stuff to read on forums so wanted to say it's not all bad and things can improve pretty quickly when you start taking medication :) x

13 Replies

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  • Always good to hear encouraging positive news. Lets hope things will continue to improve.

  • Crikey! 267???

    So glad you are feeling better, but doesn't that just go to show that TSH is a lousy test? I felt like death at 4!

  • Consultant said 267 was highest he'd ever seen.. Apparently he'd had a lady in a coma at 150 so I guess I must be lucky!

  • Welcome - and glad you are being treated. But I have to take a different tack. The doctors who allowed you, as someone diagnosed with Hashimoto's, to slide into the extreme hypothyroidism you describe have demonstrated at the least ineptness.

    Myxoedema coma (which is a bit of a misnomer) has a frighteningly high mortality rate. Not a state that anyone should allow a patient to get anywhere near. But that is what it sounds as if they did with you.

    Wishing you all the best

    Rod

  • Do you think that it should have been treated even without symptoms? Beany seems to have been physically well.

  • Thanks for your well wishes! It's a difficult one - I've been fine for years so as far as the doctor was aware I still was (the last time I visited the doctor was a year ago about something else and they did my bloods and they were fine). When I went about a month ago complaining of feeling poorly I had bloods done on the Thursday and on the Friday the results were back, they put me straight on medication and referred me so they dealt with things as quickly as they could :) I probably need to take a bit of responsibility myself for it getting so bad... I had been feeling rubbish for weeks but it was only when I put on about 6lbs and my face blew up like a puffa fish that I realised something wasn't right and went to the doctors!!

  • I'd be very interested to know what the actual test results were. In Hashimoto's it appears to be reasonably common for TSH to remain fairly stable (though may rise a little), FT4 go down a bit and FT3 go up a little. Of course, any standard interpretation of TSH only (which is what most of us would expect to be all that was done) shows nothing at all. Only a slight change but still within range. So if that is was they did, it was inadequate.

    Do they understand that many people with Hashimoto's go through periods, short or long, of hyper- and hypo-thyroidism - sometimes over many years - before finally becoming really hypothyroid? That too can ensure failure to diagnose on the basis of tests and failure to recognise when the corner has been turned.

    Did any doctor ever tell you what symptoms you could expect if the Hashimoto's did make you hypothyroid? If they never told you, that was poor.

    Did they ever check you for the other things we so often see going along with hypothyroidism (especially Hashimoto's)? Such as iron/ferritin, vitamin B12, folate, vitamin D - for starters?

    Rod

  • I got stuck where you say you were diagnosed years ago but didn't need treatment - ? Do you mind me asking how that came about and who made that judgement? Going by your recent tsh you really really did need treatment.

  • Yeah saw a consultant about ten years ago, had tests and they found I had hashimotos but it never developed to full blown hypothyroidism so they just kept an eye on it (recent consultant agreed this was the right thing to do). Had a blood test a year ago and I was fine. In really simple terms I think hashimotos gradually 'breaks' the thyroid and I guess over time it must have been doing so.. Perhaps I had a bug/was a bit stressed and it brought it on faster/maybe it was going to develop to hypo at some point anyway.. who knows?! I . I'm 29 and quite healthy otherwise :) explains my terrible memory lately!!!

  • I was diagnosed with Hashimotos in 2005. TSH FT4 FT3 were all in range. Anti-bodies high. When that happens the thyroid struggles. My GP here in Crete put me on T4 as a way of supporting the thyroid...just a small dose. Maybe had your GP done that then you would not have this dangerously high TSH.

    I think if you were to look at all the Signs and Symptoms on the list on the main Thyroid UK website you may be surprised how many you have. Having a bad memory has just been mentioned. Low B12 maybe ? If you have Hashimotos you may also have Low Ferritin - Iron - Folate - VitD - as well as B12. They all need to be high in their ranges to support the conversion of T4 into the ACTIVE T3...and your health generally.

    Your Doc is not doing a very good job of taking care of you. Think you will learn loads from this site. You are young and have a diagnosis - that is great - so now build on it with additional supplements to protect your health in the long-term....

    Please ensure you have your FT3 tested at some point as Hashi's people often have conversion issues - also absorption and assimilation. Auto-immune conditions often start with LGS - Leaky Gut Syndrome and other conditions.

    Good luck on your journey...and will look out for your posts.....

  • Hi Beany84. Thanks for the explanation. At least you were being monitored, which is great, so your care has been thoughtful in one way, but when you think how high your tsh was and that less severe ht has resulted in coma, I would say it hasn't been monitored carefully enough. I'm not being critical specifically of your care (which seems like it was better than most) but just throwing up my hands at the way it seems many of us are allowed to get really ill before treatment, which I think is unnecessary.

    Good anecdote though - you must be near the top of the tsh list, even here. :-)

  • Gosh dont know how you functioned! Although I am hyper my friends t4 eas 100 and something and she could barely string a sentence together, Her GP blamed her tiredness and not being able to think clearly on having had a baby 2 years previously. Just goes to show how we all react and need treating on an individual basis. Good luck pleased you improving

  • I've had Drs blame my quite severe symptoms on having had a baby. It's not good at all.

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