Help with Graves Disease: I'm new to this site... - Thyroid UK

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Help with Graves Disease

judiboden profile image
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I'm new to this site. I was diagnosed with graves disease in 2011 and since then have been up and down between hypothyroid and hyperthyroid. I was started on 20 mgs of methimazole, but this amount fluctuates due to tsh, t3, t4 test results. I am 66 years old, have major joint aches, panic attacks and cannot walk far distances due to back pain. Lately, over the past year, rather than being hot all of the time, I have been FREEZING. I have been very cold in hot weather, warm weather, and cold weather. I read that Hashimotos was sometimes misdiagnosed with Graves. I was diagnosed by doctors who thought I had thyroid storm- very high bp, atrial fibrillation, low fever around 96, palpitations in hands and legs, etc. Since then i have read that Thyrotoxicosis has similar symptoms . Has anyone who has Graves Disease ever had this problem? Maybe my thyroid is dying? I have been researching this for a while, my doctor thinks is definitely Graves, but she is a GP and wants to refer me to an Endocrinologist which I agree with.

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judiboden
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SlowDragon profile image
SlowDragonAdministrator

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

To confirm Graves you would need TSI and/or TR antibodies tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

list of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org

greygoose profile image
greygoose

I agree with SlowDragon, you need your antibodies tested. Yes, it seems this often happens, that doctors don't understand the difference between Hashi's and Grave's - they often don't even understand the difference between hypo and hyper! And, it makes me sick these doctors that 'think' the patient has Grave's, but never bother to do the correct antibody testing before starting treatment. You must insist on antibody testing to get a correct diagnosis, and thus correct treatment. Nothing else is acceptable.

humanbean profile image
humanbean

I've just written this post for someone else, and it may be relevant to you as well :

Just for info, have you come across this site for Graves' and hyperthyroid sufferers?

elaine-moore.com/

There is loads of info to read that you might find very helpful.

I'm always shocked by the number of people who come here having been told they are hyperthyroid or have Graves' Disease, but the doctor has never bothered to prove it. Sometimes these judgements appear to be made simply on the basis of the TSH being below range, which is appalling. There is far more to diagnosis than that.

Fruitandnutcase profile image
Fruitandnutcase

You really do need everything checked as the others have said. If you do have thyroid antibodies and do have Graves then you really must be treated by an endocrinologist and one who specialises in thyroid diseases - not one who deals with people who are diabetic.

Surely if your doctors thought you were having a thyroid storm they ought to have taken immediate action - that is terrible serious and I would not have thought it something for your doctor to be dealing with. I just know that when I was diagnosed I was so hyper my GP started me on antithyriod drugs (I think after consulting our local hospital) until I could get to my endocrinologist.

I’ve got Graves and one thing that I’ve known all my life is that I have a totally defective body thermostat. I’m always either really cold or far too hot. Never really comfortable and mostly cold. I remember I used to like to sunbathe wrapped up in a rug with only my face showing when I was a child (I still do)

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