Graves or not graves??

[Gretna99]

Has anyone out there tested positive for graves antibodies then told it's not graves??

Was diagnosed graves in April (low tsh, high t3, positive antibody test). Consultant confirmed graves and I started treatment on carbimazole. Scan showed 2 tiny nodules on thyroid.

Saw a new consultant today who is convinced I don't have graves. He said that my antibody test was only slightly elevated which he thinks means that I have graves antibodies but that they are dormant not active. He's convinced I have a severe case of acute thyroiditis that is taking longer to cure because of my antibodies. He spoke to another senior consultant who agreed that I may not have Graves' disease after all. I have no eye symptoms at all. Has this happened to anyone else??

[Clutter]

Gretna99,

Many people have Graves Disease without having thyroid eye disease. If your antibodies were positive you have autoimmune Graves Disease causing hyperthyroidism.

[Gretna99 in reply to Clutter]

That's what I thought but he was convinced that because my antiobodies were only slightly raised that they are dormant and not active. Therefore making me not graves. I've often thought myself that people with graves do have the gene in their system always but this lies dormant until something unknown sets it off (stress usually) and then the symptoms begin.

I must point out that the 2 doctors I saw today work at the RVI Hospital where they are actively researching Graves' disease and graves eye disease. The hospital is a centre of clinical excellent when it comes to treating these conditions. So it's hard for me to not want to believe their views on me. I know that some people with graves don't show antibodies in their blood so I suppose it could work the opposite way too?? Don't you think?

[Clutter in reply to Gretna99]

Gretna99,

If antibodies are positive then you have Graves. Whether Graves is dormant or active is something else. If Graves is dormant why are you hyperactive? Some people have thyroid eye disease which means they have Graves even if antibodies are negative.

[Gretna99 in reply to Clutter]

He said I'm hyperthyroid because of thyroiditis and not graves. Obviously I know that if I have the antibodies and they are currently dormant it could become active at any time. It's just bizarre that I even thought the same as he did a few months ago (never mentioned this to him though).

I just wonder if there are any other people out there who've been diagnosed Graves then undiagnosed?? It would be interesting to know.

[Clutter in reply to Gretna99]

Gretna99,

I don't understand that at all. If antibodies are positive by 1 or by thousands what does it matter? Many members have had Graves hyperthyroidism and then have remission from the hyperthyroidism but they will always have Graves Disease because Graves doesn't burn out even when the thyroid is removed or ablated.

[Gretna99 in reply to Clutter]

I'm not sure you understand what he told me. I know that one you have Graves you always have Graves even when your in remission or your thyroid is removed. My new consultant and his senior colleague are disagreeing with my original consultant about my diagnosis. My first consultant told me I have Graves, but my new consultant disagrees. He thinks I have dormant graves antiobodies and that my hyperthyroidism is being caused by thyroiditis. He says the fact that I tested mildly positive for graves is just a coincidence and not the cause. So basically he's saying I've been misdiagnosed. He's not saying I had Graves and now I don't. So that's what I'm wondering, how many other people have been misdiagnosed??

[Clutter in reply to Gretna99]

Gretna99,

No, I'm not understanding how you can have positive Graves antibodies, dormant or active, and not have Graves Disease or how it can be a misdiagnosis.

[Gretna99 in reply to Clutter]

From his conversation today, I suppose he is saying that unless it's active then you don't have Graves. He said there are many people who test positive for things like RA or other autoimmune diseases but don't actually have the disease or any symptoms. The antibodies are just lying there dormant and could go active at which point symptoms may appear and a definite diagnoses made.

[greygoose in reply to Gretna99]

I think he's an idiot. Tell him that if it looks like a duck and quacks like a duck, then the chances are it is a duck!

That would be one hell of a coincidence to have Grave's antibodies, but hyper labs and symptoms cause by something else! I'd see another endo, if I were you;

[Valarian in reply to Gretna99]

Acute thyroiditis is quite rare, and due to bacterial or fungal infection rather than being an autoimmune condition. (There is also sub- Acute thryroiditis, which is linked to a viral infection).

I would ask the endo why he is convinced it’s Acute thyroiditis rather than Graves - that should help reassure you (or not !) re diagnosis. From previous posts, you’ve continued to have problems once you were euthyroid, so is this diagnosis something for which they have definite evidence, or a passing straw to be clutched at ?

The most important thing is to ensure you get appropriate treatment and monitoring. What have they offered ? Are your thyroid levels still within range, and do you have more blood tests scheduled ?

Assuming this is Acute thyroiditis and can be resolved, given you’ve now tested positive for antibodies, will you be offered regular thyroid function tests in the longer term ?

[Lisa254]

Hi gretna99

I have had the exact same experience I have been told I have acute/sub acute thyroiditis not graves by 2 docs as my antibodies are marginally elevated and a 3rd said I have mild graves. I have no history of thyroid problems in my family so it’s strange how I have it.

I know you posted this a while back how are you now?

[Gretna99 in reply to Lisa254]

Sorry, just seen your reply.

I’m fed up. I have no idea what I have. I’m positive for graves but don’t know if I have it or not! Not sure how I’ll ever know?

Did you ever find out if you have graves or thyroiditis?

[Lisa254 in reply to Gretna99]

Hi .... yes same here fed up of not feeling myself!!

I am no further, I asked my endo to retest my anti bodies and he said no it’s too soon! I’m in normal range/ bordering hypo now and I’m sure I’m over medicated but who knows!

I no longer have a million and one physical symptoms it’s now more mental symptoms I have but I’m sure I’m over medicated!!

How are your symptoms?