My nephew was put on thyoxine bu his endo sue to underactive thyoid symptoms, high TSH and lowish T4....his doctor not endo took him off them because he fel more unwell on them. Weeks passed and he had more symptoms, tiredness, muscle pain, stiffness and low mood.... his doctor has now started him on 25mg of thyroxine again.
From what i am told he does not not have auto immune thyroiditis..this is what his docotor has told him but im not sure what tests have been done.
His latest bloods are TSH 10.5 and 13 t4.
I am suprised he has not got an auto immune throid problem as he has diabetes 1.
If this is not the case what is the cause of his thyroid condition?
I have Hashimots and most info relates to that im just trying to find out a little more to pass on to him.
Thanks
Christine
Written by
yorkshiregirl44
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How old is he? 25mcg seems a very conservative starting dose for someone with a TSH over 10. Such a low dose would almost certainly make him feel worse rather than better.
Hes 35, they first started him on 25 then raised it to 50 but he was only on that a metter of days because he told his doctor he felt unwell on it. The doctor said he did not need medication anyway and took him off it. Now they have started him again on 25mg.
I did try to explain to him that it can take months to start feeling better but with the doctors advice at the time saying he did not have a problem he went with that.
Well, we do tend to trust doctors - at least until we find out that's not always a good idea!
Poor chap. I think you're right - it may well be autoimmune. I wonder if both types of antibodies were tested?
The other thing that occurs is if he's diabetic, he might have some other vitamin / mineral deficiencies that need addressing. Sounds like his doctor perhaps isn't the thorough type though, if he thinks that a TSH of 10 doesn't need treatment. {sigh}
I think hes got an endo appointment soon so maybe he will find out more then.
When iv looked at other causes on hypothyoidism other than auto immune all i can find is people who have their thyoid removed or damage to the gland due to things like cancer.
It's possible his thyroid has always been on the small side, or simply didn't function as well as it might have done right from birth. Some of the symptoms might have been blamed on him having diabetes. I'm sure I've read recently that there's some evidence that low thyroid function can cause diabetes (but I may have dreamt that... )
I don't appear to have auto-immune issues according to blood tests, but I'm assured by many on here that blood tests don't always detect antibodies (no idea why). But I've always been a low energy type of person, right from childhood - never had much get up and go, prone to putting weight on etc. I was very small at birth, born with breathing problems courtesy of having the cord wrapped tightly round my neck - I have no idea whether that could have had an impact on how well my thyroid formed or whether it was damaged while I was in the womb, or during birth.
I've pondered all sorts of things. But there's hypothyroidism in the family - my maternal grandmother had hypothyroidism. I don't know whether it was autoimmune - she's long gone. So it could be a genetic thing.
Maybe he's not converting T4 to T3. My first treatment with T4 made me worse after a few weeks as I wasn't converting - felt better when I gave it up, then went downhill again until my doc suggested T3.
Could you suggest that he has a good look at the ThyroidUK website so that he knows what the docs and endos are talking about. Maybe his endo will try T3, but he also needs to have his vitamin & mineral levels checked.
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