TPA negative and hyperthyroidism

[Kenya71]

I have been suffering ftom hyperthyroidism for a year - diagnosed as Graves. My results were getting better but my latest blood tests show that my free TS3 and TS4 levels are still a bit high but my Thyroid Peroxidase Antibodies results are showing as negative; there are -15. Consultant has said this is unusual and I e been referred for a trab blood test. Has anybody any experience of similar results? Many thanks

[SeasideSusie Remembering]

Thyroid Peroxidase antibodies are for Hashimoto's - hypothyroidism.

Graves disease is diagnosed by positive TSI/TRAbs, without that you don't have a confirmed diagnosis of Graves. So how come your consultant is only doing TRAb test now?

Antibodies fluctuate, Hashimoto's tends to start off with a "hyper" episode, then go to "hypo" and can fluctuate between the two.

[Kenya71 in reply to SeasideSusie]

Because they diagnosed Graves - tgey didn't do the Trab test. Too expensive apparently when there is a pretty certain diagnosis. Thank you for your response

[SeasideSusie Remembering in reply to Kenya71]

when there is a pretty certain diagnosis

So what did they base this pretty certain diagnosis on then, if not positive Graves antibodies?

Asking because we have seen so many, many times on the forum, members say they have a diagnosis of Graves and have been put on Carbimazole. When we find out exactly what has been tested, they have in fact got Hashimoto's and were going through a hyper phase of Hashi's. Giving Carbimazole is completely wrong in those circumstances, besides having a wrong diagnosis on your records.

[MaisieGray]

If by "-15" you mean minus 15, that's not possible. You can have 0 antibodies or you can have a number of them, but you can't have less than 0. Testing negative for an antibody means that you have fewer than the lower number of the relevant reference range. Given the important issues raised by SeasideSusie, can you post the results of the tests that led you to being diagnosed as hyperthyroid/Graves, and your latest results, so that folks might advise you more accurately?

[Kenya71 in reply to MaisieGray]

Maisie - I don't have a full copy of my blood results. The consultant just told me at my last appointment that I had a negative 15 anti result and that this was not normally seen with my other results. I need to call him Tuesday for the trab results, so I'll talk this through then as I obviously have no understanding whatsoever 😁. Do you normally come out of your appointment with a full copy of your blood results? I really need to ask for this moving forward.

[MaisieGray in reply to Kenya71]

Ah, that explains the confusion. If the reference range for TPO Ab was something like <34, any result between 0 - 34 is not indicative of you having Hashimoto's (TPO Ab can be present in both Hashimoto's and Graves', but generally higher in the former). So if the result was 15, it is within range, and you are negative for Hashimoto's ie the result is a positive, not a negative, number; and it is you who is negative for the condition.

For each of us to proactively manage our health, and be self-directing, it is critical that we have the facts - not least because there are many GPs and Endos alike whose thyroid knowledge is worryingly limited. In particular, and shockingly, as SeasideSusie has described, we see reported here evidence of people with Hashimoto's being diagnosed and treated as if they have Graves' disease (and if we see it here, who's to say how common might it be, beyond this forum). Even without horror stories, having sight of the results of all tests that are carried out on us means that we can track progress or deterioration in our health; and identify where changes in treatment ameliorated, caused or exacerbated symptoms or brought about side effects; and so on. So I routinely obtain a printout of every GP-ordered test results by dropping into reception and asking for it to be printed off (free of charge, and legislated for by the Data Protection Act 2018 and associated EU Data Protection Regulation). With secondary care outpatient tests, I often am copied in directly, on any letter sent to my GP, but where I'm not, again I ask for a copy to be printed off by the surgery. If you attend an outpatients' appointment where your specialist is referring to past test results, and you don't know what they are, and haven't had time to contemplate their implications, you are immediately disadvantaged, and even with the best of Drs we need to be on our intellectual toes to get the best out of our appointments as a two way partnership.