Graves Disease - ‘probably’

[Aegnora]

Hi there.

I had an aggressive immunosuppressive treatment for my MS a couple of years ago. About 30% get Graves Disease. Lucky me.

I’ve been diagnosed with it from bloods alone last summer. No doubt it’s correct but I wondered - I haven’t had an ultrasound or scan to double check it’s not other thyroid conditions.

Is a scan best practice (Covid troubles aside)?

Thanking you!

[greygoose]

Have you had antibodies tested? If not, I would think that should be the first step to take.

[pennyannie]

Graves is an auto immune disease and when it attacks the thyroid the symptoms expressed generally need the intervention of Anti Thyroid drugs to block your T3 and T4 levels rising any further.

Graves is seen as al ife threatening condition if not treated if it atacks your thyroid.

Graves antibodies tend to wax and wane, and is said to be a stress and anxiety driven autoimmune disease.

You might like to dip into the Elaine Moore Graves Disease Foundation website - Elaine has spent the lat 20 odd years researching this poorly understood and badly treated AI disease and if anybody knows anything it is this lady, who does offer a one to one with Graves patients, if she is around, as well as an open platfoem for all Graves sufferers, much like this amazing forum.

I have Graves as does Elaine and it seems we both went through RAI thyroid ablation and whilst I became more unwell over the following years in the UK , Elaine, being a medical technologist in the USA started researching why she was still unwell and why RAI didn't work as she was promised and she now is a leading authority on all things Graves and has much research into the AI component of this disease for which mainstream medical have no answers.

Long story short, I don't know about the interaction with the drugs you have taken but I believe I know of a woman who may have already picked up on this on behalf of other people in a similar boat.

[tattybogle]

Lucky you ..

The antibodies that confirm Graves disease are called TRab = T(sh)Rab = Thyroid stimulating hormone Receptor antibodies.

They are a blood test, and usually it is ordered by an endocrinologist. i don't think GP's do them.

If you find 'over-range' levels of these on your blood test history, then it's Graves.

[Aegnora in reply to tattybogle]

Thank you so much. Haven’t seen those readings in my endocrinologist letters so far

[tattybogle in reply to Aegnora]

I doubt they would include them in letters to be honest , you might have to ask for blood test records.

[Aegnora]

I just want to be sure it’s definitely Graves - probably is, but am a ‘need to know’ patient

[PurpleNails Administrator]

Thyroid Stimulating Immunoglobulin (TSI) or TSH receptor antibodies (TRAb) must be tested if Graves suspected to confirm diagnosis. There are other reasons to be hyper some are transient. Hashimotos can have phases of hyper but ultimately hypothyroid. carbimazole lowers production of new hormone and drives levels down too fast if not very high or trending downward naturally.

Scans eg ultrasound scans are not routinely ordered and usually only performed if showing signs of compressive growth ie problems with breathing, swallowing or voice or pain eg around collar bone.

Sometimes a nuclear uptake scan is done if autoimmune cause is not found and toxic (hyper functioning) nodules is suspected.

First step is get your blood test results to see what’s actually been tested as often a full thyroid function is not done and all low TSH is treated as probable Graves….