I have underactive thyroid with high thyroid antibodies
So I’ve posted here a couple of times over the last year. I feel like I’m getting no where.
To cut a long story short, was given T3 to take each day as well as my levo 75 per day. This was back in November. I did see some signs of improvement in my symptoms (less tired, slight weight loss, eye problem gone and weird tongue issue gone. Leg pain less)
However, went to see my doctor in January, did bloody tests and he advices I stop taking ALL medicine. Thought this was too weird so changed doctor.
New doctor, says take 50 levo per day. No T3. Says that in the UK that doctor who gave me T3 would be struck off. And it’s so dangerous and causes heart attacks. He also told me my antibodies are a gift from god and nothing to do about them or worry about.
8 weeks on. My leg pains are back. My hair is falling. My eye pain is back. My weird tongue thing is back and I’m the heaviest I’ve ever been in my life.
He did prescribe iron and I’ve had an infusion once a week for 4 weeks. And also he prescribed vitamin D.
I just don’t know where to go or what to do next.
these are my latest results from Feb
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Sppr
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Your original diagnosis does sound a little bit 'suspect' to me to be honest .
the only evidence there is of high TSH/ low T4 is the time you tested 5 weeks after stopping 50mcg levo which you took for about a month (TSH 13 / v low T4)
It is impossible to say with any certainty how long it would take for your T4/T3 levels and TSH to return to their 'natural' levels after doing that .. but it is possible that 5 weeks was not enough time and therefore those results must be looked at with a bit of suspicion .. in my opinion it may have been wiser to wait few more months and retest , to be sure.
Starting Levo with normal TSH/ T4/ T3 levels in Feb 2022 and then restarting in July based on that one rather questionable test (TSH 13 / T4 v low) , has muddied the waters a bit re. the accuracy of your original diagnosis, or need for thyroid hormone .
WHAT WERE THE ORIGINAL RESULTS BEFORE LEVO ? i don't think you've posted them anywhere.
So basically you had no clear evidence of Hypothyroidism , just possible evidence of hashimoto's (which antibodies were over range ? TPOab or TGab ~ TGab can be be high for other reasons) So it IS possible the original prescribing of Levo was incorrect by first Endo.
Another GP probably added T3 too early (and at too high a dose) , then told to stop everything when you said T3 hadn't helped , and because TotalT3 was over range, and your blood pressure had gone to highest it had ever been ~ I'm not very impressed with that GP adding 25mcg T3 , or with their suggestion to stop everything suddenly either.
Regarding your current GP , well i think you should stick with it and get levo adjusted carefully this time AND get nutrients optimised properly . See what the results on 50mcg are and put them on here before deciding what to do next .
The comment about antibodies is 'sort of' true ....TPOab (Thyroid Peroxidase antibodies) are just a natural part of the bodies mechanism for cleaning up damaged thyroid protein , so when they are higher than expected they are a useful marker for diagnosing Hashimoto's (autoimmune) damage ...but they are clearing up the mess and there isn't really anything to be done about them directly .
They are high due to the immune system attacking the thyroid ( hashimoto's ) and if you can reduce the immune system attacks, then the antibodies will go down . but the antibodies themselves are not causing the problem.
TGab (Thyroglobulin antibodies) can also be high in other( non thyroid) autoimmune diseases , not just hashimoto's eg. Sjögren's syndrome, myasthenia gravis, celiac disease, and type 1 diabetes sciencedirect.com/topics/im...
Having High TPOab or TGab is not evidence of hypothyroidism (low T4/ T3 that need replacement) .. they are basically evidence that 'some damage has occurred to the thyroid' .. not 'how much damage' . and they can't always tell you what the reason for the damage is.
I did a summary of your test results from your previous posts which may help people with their replies .
" Feb (2022)I went to the GP feeling crap. Tired, sad, heavy periods. They tested my thyroid and lots of other bloods but said they thought it was all due to having Covid a few months before. (Not sure why). Anyway bloods came back all ok What were these blood results ?
few weeks later I went to the Gynecologist. She said she thought it was thyroid so referred me to an endocrinologist. He was, for want of a better word, quite ‘wacky’ and said even though my TSH and T3 and T4 were within range, he believed I needed thyroxine. What were these results ?
He said so many women need it. He prescribed Euthyrox 50ug. Once a day in the morning an hour before drinking/eating.
Now, after a month of taking it I lost so much hair I was quite frightened. I also started having this unbearable pain at night time I’m my knee/thigh. The weirdest thing.
I stopped taking the Euthyrox as I wasn’t too convinced and thought well it’s not out of range so…
Fast forward to last week and I had gained 10lb in about 3 weeks. Nothing had changed diet or exercise wise. Tiredness ridiculous. Puffy face and weird eyes.
So I WENT TO ANOTHER GP.
She did T3/T4 / TSH but said it was just my age (43) and doubted I had a thyroid problem.
Results came back (7th July these were taken about 5 weeks after stopping Levo )
TSH 13 [0.34 - 4.94]
Total T4 39 [62 - 150]
T3 0.95 [0.98- 2.33]
These dropped massively since Feb.
GP has emailed me to tell me to start taking the Euthyrox again. Start on 50 for 2 weeks then for to 75, then re test in 6 weeks"
Says that in the UK that doctor who gave me T3 would be struck off. And it’s so dangerous and causes heart attacks. He also told me my antibodies are a gift from god and nothing to do about them or worry about.
I did see some signs of improvement in my symptoms (less tired, slight weight loss, eye problem gone and weird tongue issue gone. Leg pain less)Previously you wrote you had felt no benefit ?
8 weeks on. My leg pains are back. My hair is falling. My eye pain is back. My weird tongue thing is back and I’m the heaviest I’ve ever been in my life.
He did prescribe iron and I’ve had an infusion once a week for 4 weeks. And also he prescribed vitamin D"
the reason I said I felt no benefit for the T3… all the symptoms I have listed, the doctor told me we’re nothing to do with thyroid and not to believe everything I read on the internet. It’s only having been on it and stopped I see that perhaps they were related. But I’m not sure.
TPO antibodies 389 (ref range 0-34) this was tested in 10th February 2023.
Original tests after seeing gynecologist 31st March 2022
" all the symptoms i have listed , the doctor told me we’re nothing to do with thyroid"
Oh , that old chestnut ... i fell for that one for quite a few yrs too. I have now learned we have to trust our own experience more, and their opinion less .. especially since most of 'em only formed their opinion after being taught from the "Ladybird Book of TSH" and nothing much about how thyroid hormones directly affect the function of virtually every cell in nearly all parts of the body .... and brain .
OK so that is 2 significantly positive TPOb results .. and the fT4 was only just crawling into range ....so that dose seem definite confirmation of Autoimmune Thyroid Disease at play to me.
.....meaning you were fairly likely to end up hypothyroid (fT4 below range) / on Levo at some point in the future anyway .. so i wouldn't worry about misdiagnosis.
So did you never have a TSH result before being started on levo ?
TSH is usually the first thing to rise when hypothyroidism starts ...it rises over range long before the fT4 goes below range . TSH is a very useful test for diagnosis .. ( it's not so much use for adjusting dose correctly later on , but it's useful for early diagnosis ,unless there is a pituitary problem)
The original doctors you saw in Feb 2022 cannot say you didn't have early (subclinical) hypothyroidism that may be causing symptoms and may have needed treating, if they didn't ever test TSH .
'subclinical' hypothyroidism (TSH over range while fT4 is still in range) does give some people bad enough symptoms that they need treating at that point .
Anti Thyroglobulin ABs is just another way of writing TGab ( Thyroglobulin antibodies) but don't worry about them .. your high TPOab are much more useful as proof of autoimmune thyroid disease
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TSH, FT3 and endos advice - so confused :(
Update doctor appointment
So confused
Good news and bad - advice please
Doctors appointment advice if anyone still up.
