I feel I am running out of patience with my GP and Endocrinologist, like I try to get to the bottom of why my thyroid became hyper in the first place and they don't seem to care at all. They just shrug and advise me to take carbimazole, which I don't mind taking but I would like to know why it got so bad in the first place.
I have been getting progressively sicker since January and got really sick in May so I noted the progression of my thyroid issues through my bloods.
January - Free t4: 17.5 pmol/L
TSH: 2.88 miU/L
April - Free t4: 20.8 pmol/L
TSH: 1.38 miU/L
May - Free t4: 21.5 pmol/L
TSH 0.54 miU/L
July - Free t4: 33.9 pmol/L
TSH 0.01 miU/L
July - Free t4: 35.8 pmol/L
TSH 0.007 miU/L
Would it be worth seeing someone alternative to find out what may be causing this?
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ed2w
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How did they diagnose that you were "hyper" in the first place?
When did they prescribe Carbimazole?
Have you had any thyroid antibodies tested:
Thyroid Peroxidase (TPO) and Thyroglobulin (TG) for Hashi's (underactive)
Thyroid Stimulating Immunoglobulin (TSI) and Thyroid Receptor Antibody test (TRab) for Graves (overactive)
If TSI and/or TRab have not been carried out they can't confirm Graves.
With those results it's possible that you actually have Hashimoto's and your July results are showing a Hashi's "hyper swing". Hashi's is where antibodies attack the thyroid and gradually destroy it. Antibodies fluctuate and that causes fluctuations in levels and symptoms, you can go from hypo to "hyper" and back again. It's not true hyperthyroidism, it's just a phase of Hashi's.
But neither Graves nor Hashi's can be confirmed without testing antibodies.
There have been quite a few members lately who have said they have been put on Carbimazole but it's turned out they've been wrongly diagnosed and in fact they have Hashi's not Graves.
So if TSI/TRab came back negative, how come they confirmed overactive thyroid and prescribed Carbimazole? They had no definite diagnosis.
With Hashi's, because antibodies fluctuate then one negative doesn't mean you don't have Hashi's. You'd need a few negatives over time. You need to try and catch the antibodies when they're at their highest so testing them in July would have been a good time.
I think so, you or someone on here gave me a list and I took it to my endo and he said that they were tested and came back negative. I just had another round of tests so will see what the results are. They prescribed Carbimazole because I was getting sicker and sicker and they were worried about how much weight I was losing. What alternatives are there if waiting isn't an option?
sure, fatigue, dizziness, extreme weight loss, depression, night terrors, visual disturbances, burning in stomach, trouble swallowing, cognitive issues. More minor ones but those are the main ones.
Most of the symptoms are of hypothyroid rather than hyper, although there can be overlap. You may actually need high levels of thyroid hormones to feel well.
When uncertain as to whether you are hypo or hyper the basal temperature test can be helpful.
well I have tremor, shakiness, muscle weakness, difficulty concentrating and most importantly the quite severe weight loss issues. they are all hyper right?
Fatigue, dizziness, depression, visual disturbances, burning in stomach, trouble swallowing, cognitive issues, muscle weakness and difficulty concentrating are all associated with hypo. As many people with hypo are thin as are overweight.
It is worth checking basal temperature to be sure which it is.
Have you actually had a printed copy of your blood test results for antibodies? If not, then I would get hold of a copy. How do you know they are telling you the truth? All 4 antibodies tested and negative?
i have a print of a couple. I can get print out of results from my GP easy enough but its really difficult getting them from my endo, just with the nhs and bureaucracy etc. why would they lie? surely that would breach some sort of law or code of conduct and whats the point?
"Antibodies fluctuate and that causes fluctuations in levels and symptoms, you can go from hypo to "hyper" and back again. It's not true hyperthyroidism, it's just a phase of Hashi's." If that was the case would my results not be in the hypo range at some stage, I showed my results above and as you can see they have steadily increased since January? And they have been in the hyper range since May so thats like 4 months now. Just trying to make sense of this?
Yes, your results would be in the hypo range at some stage, it's a case of testing them at the right time to show that.
As explained in other replies, you have symptoms of both hyper and hypo, that is classic Hashi's. You can have Hashi's but not have positive antibodies.
I don't have Hashi's, I don't know how long a hyper phase can last, maybe someone who does have Hashi's can answer that.
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