I just had a scintigram the day before yesterday, and the radiologist confirmed graves, although my GP had checked my antibodies and said the opposite. The endo (whom I will be seeing on tuesday again) said that in 10% of graves’, people dont have the antibodies that prove auto immune.
My question is, is there still a possibility that its not graves? I am devastated upon hearing this news, obviously.
I was diagnosed with hyperthorax while feeling anxious and depressed last September, felt better and now have been over medicated with Strumazol 30mg- (I live in the Netherlands) so went hypo- again with the depressions...
I had a bloodtest yesterday, so I’ll hear whats up on tuesday- in the meantime im obviously scared as hell...
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Klaus1974
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Question is, which antibodies did your GP test? GPs often don't know the difference between Hashi's and Grave's, and sometimes even think they're the same thing! The antibodies for Grave's are the TRAB or TSI. Do you have a copy of your blood test results? If so, best to post them here, with the ranges. Then we'll know better what we're talking about.
Yes, I did read that. But, all your antibodies are negative. And, whilst I know that Hashi's antibodies fluctuate, I'm not sure that Grave's antibodies do. So, I'm wondering about your diagnosis. I'm not sure that scinti can diagnose Grave's. I could be wrong, of course, but I do wonder. Your TSH has never been suppressed, as it would be with Grave's - and at one point reached 36, if I'm reading that correctly. Now, at 3.6, you are hypo. I cannot help feeling that they really shouldn't be treating you for Grave's. So, do be very careful with your next lot of tests. Are you taking anything at the moment?
the endo said that not all graves patients show antibodies. hence the scinti. the radiologist immediately mentioned graves when he saw the scan, and I saw it too- a quick google confirmed his comment- all the pictures there look like mine, and also the information online seems to confirm his diagnosis. I am not on any meds.
If it’s not graves- what else would it be? I felt, after starting on strumazol, ok before I went hypo...
OK, well, I suppose it must be right, then. But I've never before heard that some Grave's people don't have high antibodies.
What else would it be? Hashi's, where you swing between hypo and 'hyper'. In any case, you're hypo at the moment, with a TSH over 3. But, there's nothing to be scared of. All this can be treated.
I have spoken to the doctor and they will be checking my bloods again this monday- lets see what happens. Started taking beta blockers again today, and feel a little less antsy.
Well, if you lived in the U.K., I would definitely say to believe the endo rather than the GP, since most hyper cases are referred to a specialist straightaway, and GPs often cannot order antibody tests themselves, and have little personal involvement in treatment of Graves’. Not all patients eventually diagnosed with Graves’ have positive antibodies, and I think the fact that you’ve already had antithyroids may also affect this. (As well as recent tests and ranges, do you have those from your original diagnosis ?)
It’s quite difficult to get the dose of antithyroid medication right, and it’s therefore not unusual to end up overmedicated. This is typically resolved very easily as soon as the dose is reduced The problem is, assuming you do have Graves’, you will need to remain on antithyroids for twelve to eighteen months, to stand the best chance of achieving remission, and generally, they seem to err on the side of too much treatment rather than too little, because they don’t want your thyroid to start over-producing again.
When I was first diagnosed with Graves ‘ (about twelve months ago), I couldn’t walk any distance, had really weak leg muscles, and many other worrying symptoms. I wondered whether my life would ever be the same again, . Now, after ten months of antithyroid treatment, although unfortunately my thyroid levels still aren’t stable, I feel so much better. My fitness isn’t where I’d like it to be, but some of that is down to me using the excuse of a relapse as the weather got cold to take hardly any exercise over the winter !
Untreated hyperthyroidism, whether down to Graves’ or another cause, is potentially life-threatening. However, if it is Graves’ you’ve got, they should eventually be able to get things under control.
Thank you Valerian, sorry for my late reply. I have posted my results in another post I made this morning - and also a little more background to my situation.
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