Was diagnosed with Graves in April and put on Carbimazole 20mg then 40 mg then back down to 20mg. Next appointment at hospital in 3 weeks. Feeling awful at moment, so bad that for the first time ever (at 54) been signed off work (normally just carry on and struggle through when ill). Could my latest results for TSH be the cause??
Range and scores from April, June, last week.
TSH (0.3 - 5.5) <0.1, 2.8, 5.2
T4 (11.2 - 22.7) 32.9, 11.3, 14.0
T3 (0 - 7) 11.1, 3.3, 3.9
TPO (0.0 - 33.9) >600 NA, NA
That's a very strange range for FT3. 0 - 7? Really? If your FT3 was zero, you'd be dead.
Anyway, looks like you're hypo, and yes, that would make you feel awful! But, it's not the TSH that is the problem, TSH itself doesn't make you feel anything. It's the low thyroid hormones.
Her FT3 are at 3.9 on a range from 0 to 7, not at 0.
I disagree with you greygoose: I have Graves too and have gone through a relapse and then a new remission and it's always an elevated TSH that gives me hypo symptoms, never the FT4 or FT3 which are always stable and middle of the range.
I know that her result is 3.9. I was questioning the range, not the result. It's very strange to have a range that starts at zero.
The TSH cannot make you feel bad in and of itself. It doesn't do anything except stimulate the thyroid gland to make more hormone. So, how can that give you symptoms?
Anyway, whatever her high TSH means that there is not enough thyroid hormone to make her feel well.
I'm unwell and have under-active symptoms with a TSH at 2.2 on the same range.
I don't doubt you are unwell. The TSH is saying you are unwell. But, it is not the TSH making you unwell.
I had an over-active thyroid twice, I saw 3 different consultants over the past 7 years, including a private one and an elevated TSH gives under-active symptoms on Carbimazole even with normal FT4 and FT3. But I guess you know better that 3 endocrinologists.
The person who posted her results is very unwell, she's wondering if it's a her TSH that is making her unwell: according to my own experience and the various endocrinologists I saw, yes, it's her TSH who gives her under-active symptoms.
Funny, but I had a TSH of 45, but no symptoms...
So, your three endos actually said that the high TSH causes the symptoms, on and of its own self. Is that right? No other factors to take into consideration, just the TSH?
I know what the OP is asking. And I know the answer is no, TSH does not cause symptoms of either hypo or hyper. TSH is just an indication that something is going wrong - or, everything is ok. Thyroid Stimulating Hormone does not touch anything in the body except the thyroid gland. Which it can either over-stimulate or under-stimulate. But the TSH, the Thyroid Stimulating Hormone, does not cause any symptoms other than it's effect on the thyroid gland.
So, your three endos actually said that the high TSH causes the symptoms, on and of its own self. Is that right? No other factors to take into consideration, just the TSH?
Yes, that's the rule on Carbimazole. Being on Carbimazole has nothing to do with a regular under-active thyroid.
I guess you're under-active and not a Graves sufferer.
With Carbimazole, as you soon as both TF4 and TF3 are in range, even without TSH, the dose has to be decreased and so on until you reach the maintenance dose, usually 5mg but I was on less the second time.
Hypo and elevated TSH has to be avoided at all cost as it increases Graves antibodies and can jeopardize the remission.
The OP seems to be poorly treated, that's why I asked her several questions, including why her treatment was increased in June.
Well, all that seems logical. 
No, I've not had Graves. But...
Oh, well, let's leave it, shall we?
I have Graves too but in remission. You're over-medicated and have signs of under-active thyroid as your TSH is way too high.
With such results, I would cut by half and go to 10mg immediately. I never waited for the consultant appointment to cut my doses when needed: I cut, tell my GP and the GP issues a blood test to do 4 weeks later. As your appointment is in 3 weeks, your consultant will be able to do a blood test on the very same day I guess.
How is your heart rate? If you have Graves, I would suggest to buy a heart rate/blood pressure monitor: if your resting heart rate is slow, below or at 75, cutting your dose is not putting you in any sort of danger.
Nevertheless, it's strange that your consultant tests the TPO. For Graves, the proper antibodies to test is TSH Receptor.
Could I ask why you were put on 40mg? I had the same results as your April blood test and was put on 15mg, then 10 after 2 months, then 5 when my TSH reappeared after 3 months.
With Graves, the rule is that as soon as your FT4 and FT3 are in range, the dose has to be cut until you reach the maintenance dose, usually 5mg. As your results were in range in June and your TSH reappeared after only 2 months of treatment - when it can take up to 12 months - I don't understand why your treatment was increased.
My doctor put me on 20mg to start after the initial blood test in April, the consultant upped it to 40mg when I saw him in May, then reduced it down to 20mg in July after he had results of the June blood test.
Your doctor was right, your consultant was wrong. How was your Graves diagnosis established? Did you have an uptake scan, an ultra sound scan of the thyroid and your TSH receptor antibodies tested? If not, you may not have Graves.
I'll try taking half the dose and see if I feel any better. Originally my next appointment with the consultant wasn't until the end of November and I shouldn't have had the blood test until mid November. Luckily I managed to get a cancellation appointment for the end of September so had the test two months earlier.
My own doctor has ordered another blood test for me on Thursday so she has her own blood test scores as well.
For an over-active thyroid - Graves or not - a blood test should be done every 4 to 6 weeks and the dose of Carbimazole adjusted accordingly. Your consultant is not managing you properly - it happens often - so you'll have to manage your treatment with your GP.
You're responding very well to the treatment, that's positive.
If you cut your dose by half today, it may take up to 3-4 weeks to see any improvement, if any as 10mg may still be too high.
I had an over-active thyroid twice. I'm going to give you my results for the 2nd lapse so you can assess how fast things can go when responding well to Carbi.
I started my treatment in August with a TSH suppressed and T4 at 43 with 20mg.
I had a blood test every 4 weeks.
End of October, we had to cut to 10mg as my TSH was back. T4-T3 middle of the range.
End of November, cut to 5mg as my TSH was now too high.
End of February, cut to 2.5mg as TSH was too high again and I had very strong hypo symptoms and was unable to work. TSH receptor antibodies became in range.
End of April, cut to 1 tablet every 3 days.
End of May, 1 tablet every week.
End of July = end of treatment. TSH too high, hypo symptoms. THS receptor antibodies negative which means I'm cured.
The first time was similar but I was able to stay on the maintenance dose of 5mg for longer.
I hope it helps. Your TSH must be between 1 and 2 to feel good on Carbimazole.
Be aware too that Carbimazole can give muscle pain and that your thyroid is going to become more and more blocked which means that your level of energy will be lower that usual during the entire length of the treatment.
I hope it helps.
TSH is NOT a thyroid hormone and you should NOT be judged on it by any doctor.
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