Graves disease

[Assasss]

I’ve been recently diagnosed with Graves’ disease whereas I have tested my thyroid in November and was ok!!

I’m now on unimazole and inderal , feeling scared of what happened to me . Does anyone have similar condition ?

[SlowDragon Administrator]

Welcome to the forum

First thing is, do you have any actual blood test results?

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus TSI or Trab antibodies to confirm Graves’ disease and also TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have Graves’ disease (hyperthyroid) or autoimmune thyroid disease (Hashimoto's) - hypothyroid

Graves and Hashimoto’s are both diagnosed by different raised Thyroid antibodies

Link about antibodies

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

Ask GP to test vitamin levels and all four antibodies if not been done yet

Have you been referred to an endocrinologist?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

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

For thyroid including antibodies and vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Low vitamins are especially common with Graves’ disease of Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get all thyroid antibodies tested at least once .

Link about thyroid blood tests

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

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

There are many Graves patients on here

You may also find Elaine Moore’s website helpful

[Espisnowwoman]

Hi Assasss. Hope you are feeling better. I to have graves disease what are your symptoms?

[Assasss in reply to Espisnowwoman]

Thanks for your reply

I had heart palpitations and frequent bowel movements. Also a sense of burn on my back and upper body . Also burn in my stomach area. Fatigue, sweat especially at night and insomnia.

Pretty weird to me

I did tests in November and everything was ok

Suddenly in early February I had salmonella for a week and couldn’t get any better after many tests found it out

My Endo said menopause can trigger it too

I’m 51

[Espisnowwoman in reply to Assasss]

Menapause put my graves in remission but iam out of remission. Stress and trauma are big triggers to for graves. I have some of the same symptoms that u do. Hope you get better.

[Cat4health]

Hello Assasss,

Welcome =) There are a good few graves disease heroes on here. So you should get some good support. This is a difficult illness but not half as bad as doctors like to make it seem (imho they're just scared cos they don't understand it very well). There are some excellent resources out there if you want to understand more. I would highly recommend going to Elainemoore. Com. She's an expert on graves disease n has huge amounts of resources and information. Also ask whatever you can on here. Hope you find this useful. All the best- C

[pennyannie]

Hello Assass

Graves is an auto immune disease that attacks the thyroid, and the thyroid is a major gland, so when it comes under attack the symptoms can be diverse, some seemingly unrelated with some considered life threatening by the medical profession.

Your thyroid is not the cause of your unwellness but the victim of an attack by your own immune system.

There is probably some genetic predisposition to this disease, maybe a generation away from you, and read it can be triggered by a sudden shock to the system like a car accident or an unexpected death. Graves tends to be stress and anxiety driven, so please cut yourself some ' slack ' and if at all possible do ' stuff for you ' and if you feel like sleeping all day, allow yourself this time in which to ' turn off ' your mind, and a sick note should be forthcoming if you want one.

Initially you will put on an anti thyroid drug, like Carbimazole, which blocks your own thyroid hormone production and then your symptoms should ease as your T3 and T4 blood test readings come back down into range. There are alternatives to Carbimazole if this drug doesn't suit you, and depending on your symptoms you may also be prescribed a betablocker.

Your metabolism has probably been running very fast during this first phase and it is important that you keep your core strength strong and suggest you get your ferritin, folate, B12 and vitamin D tested and these must be kept at " optimal " levels in the ranges.

The NHS tend to allow about a 15 month window wherein they try and manage your symptoms on the AT drugs with a view to your reducing the medication and possibly finding ' remission '.

The NHS do not know how to manage, control or reduce the auto immune component of the disease and so simply treat the symptoms as best they can.

Ultimately you could find yourself being told to consider either RAI thyroid ablation or a thyroidectomy - please do not go down either of these routes until you have fully exhausted everything and know and have read up on all things Graves Disease.

The Elaine Moore Disease Foundation website in the States is as a complete history and guide to Graves that I have found. Elaine is a medical researcher and wrote a book back in the late 1990's as she found no help with her health after RAI thyroid ablation for Graves.

She now has this world wide following on her website where there is an open forum much like this amazing website, where you can ask anything of the forum members, many of whom have been there before you, and understand from a patient's perspective.

I'm with Graves diagnosed 2003 and had RAI thyroid ablation in 2005 - a treatment I deeply regret - I now manage Graves ( lingering symptoms ) thyroid eye disease exacerbated by the RAI and hypothyroidism. I became very ill some 8 years after drinking this toxic substance, and am now self medicating by buying my own full thyroid hormone replacement as the NHS will not prescribe the appropriate treatment for me.

P.S. Best to keep a foot in each website - this UK website is amazing and the Elaine Moore platform has very many sections to read up on regarding Graves, detailing the immune system, diet and life style choices and the more holistic and alternative treatment options.

[Yorkie2019]

Hello

I wanted to reach out as I also have Graves’ disease. All the advice above is great. I’ve definitely found the forums useful. I think the others are right, in the early days it can feel like a scary diagnosis and tricky to understand. A year on and I’m still on the carbimizole tablets and not yet in remission but I can tell you that I feel so much than before I was diagnosed. My symptoms were mostly anxiety, insomnia and mood swings. I was also feeling hungry and thirsty a lot and did lose weight. Happy to help if you have any questions

[a4m3d in reply to Yorkie2019]

Hi my wife has been diagnosed wih having over actove thryoid graves diseases 3 months ago

She is currently on carbizmole 40 mg which is helping symptoms as time goes on she is feeling stronger more able to do thing and has more energy ..which is great however she has sweling around her eyes / fingers and chin and feet.

Some days it is worse then others.

Any advise on whether this will improve woth the medication would be useful or is there any other treatment for it ?

Thanks Ahmed