My new GP has told me I have Graves Disease. Does he know what he's talking about? I am not sure whether he is ok to treat me.

[minnymolly]

I am concerned at his statement as when I was first diagnosed 14 years ago I was told I had an underactive thyroid and there has never (until now) been any mention of my thyroid ever being over active and take 125 Levothyroxine. He is reluctant to discuss my symptoms or talk me through treatment. Can anyone tell me is Graves disease a blanket term for thyroid disease either under or over active?? Or do I need to seek another GP?? Sorry this is a bit of a ramble but I am quite concerned that my GP has no interest or a good knowledge of thyroid conditions and the negative impact this may have on my treatment.

[Clarebear]

Graves disease is as far as I know associated only with hypERthyroidism and not hypO. It sounds like your GP has got confused - maybe he meant Hashimotos? xx

[minnymolly in reply to Clarebear]

Thanks for the reply. I hope it was confusion, because although he is a nice guy he tends to dismiss any thought I have that there may be other tests I need (B12, iron etc) that may indicate why I feel so lousy.

Thanks again

[Granitecitygirl]

I have Graves and I think you need certain antibodies in order for it to be diagnosed. The blanket term is Hyperthyroid. I've only been diagnosed within the last year, but I wouldnt expect a GP to have much dealings with it. Up here you are referred to the Endo if you are testing positive for over active thyroid, the GPs go on their instruction. Different if you are under active, then you stay within the control of the GP. You really want to be referred to an Endocrinologist.

[minnymolly in reply to Granitecitygirl]

Thanks. Will I need to see an endocrinologist privately if my GP declines to refer? How do I check that for a good endo?

[Clarebear in reply to Granitecitygirl]

I think it is TSI antibodies for Graves, but please correct me someone if I am wrong

[marram in reply to Clarebear]

Yes, Clarebear, it is Thyroid Stimulating Immunoglobulin. I cannot imagine that you would have been hypo if you had these antibodies. Also Graves' disease cannot be diagnosed without a confirmation of the TSI antibodies in the blood.

A doctor who is reluctant to discuss your symptoms or discuss the treatment is worrying. I would suggest that you ask for a referral to an Endocrinologist, or at least a second opinion. I had Graves' disease, and was never hypo at any time until the entire thyroid was removed.

[poing]

It's possible that your GP saw a low or suppressed TSH and immediately thought "Grave's". If you've been on levo for years, then that sounds like the wrong conclusion and your GP needs to go away and brush up on his thyroid knowledge.

The thyroid hormone levels tell you whether you are hyper or hypo. It's possible that you are overmedicated, but you can tell that from the TSH alone.

I think you can only diangose Grave's for sure by finding TSI antibodies, although it is quite likely if a person has low or suppressed TSH with high FT4 and high FT3.

[minnymolly]

Thanks Poing. I just feel I have lost faith in my GP's interest in treating me. I had to ask him for an increase in thyroxine after my last readings which were TSH 4.29, T4 16 and T3 3.5. I'm no expert but I was feeling grim at these levels and feel he could have been prepared to at least listen to my symptoms. He retested this week after I went because my voice is going and I still have achy joints and am so tired. He just seems to think I'm tired!

[miravgraves]

graves disease is the most common form of hyperthyroidism i think the figures is %75 of all cases but in some rare cases hypothyroidism is the out come dont remember the figure long time since i read it, im not saying you have graves a graves antibody test will give correct answer other things to look for is the eyes do you have symptoms in the eyes Graves' ophthalmopathy that would be a give away of graves

[sandywandy1 in reply to miravgraves]

My mum has Graves disease and so do I. She spent her younger years hyper then went hypo as the antibodies had 'destroyed her thyroid' said the doctors. I was hyper now hypo due to thyroidectomy. Mum's eyes quite bad from untreated overactive for years (the docs said she just had an excited heart!) I didn't get eye problems for a few years so you can have Graves without eye signs I guess. As per earlier answers, I think the antibody test is the only way to tell for sure. Good luck

[pingpong]

I was diagnosed with Graves four years ago and very hyperactive with FT4 level of 75 (has been as high as 150) and TSH of 0.03.

Recently been on Carbimazole 40mg (anything less has not controlled my hyper symptoms). Last bloods showed me with TSH of 74. I am now considered way too far hypo.

Yesterday now been put on Carbimazole 40mg and 100mg Levo as block and replace.

From what I understand it means the Carbimazole quietens down the thyroid and the Levo does the opposite and I'm somewhere in the middle of all this trying to find myself

[Jacdavey in reply to pingpong]

Hi i was put on carbimazole for over active thryoid. My GP due to previous problems with another pat. checked my liver function. I was very quickly taken off Carimazole! ask your GP to test your liver function. Not all of them do, thank goodness mine did.