Graves

[Boaby]

Hi I was diagnosed with Graves Disease in December, symptoms were anxiety, weight loss, very high resting heart rate, fatigued couldn’t do all usual activities ie walking, golfing felt really unwell, doc put me on Carbimazole and beta blockers, but heart rate still too high. Had to go private to see cardiologist as NHS appointment was to be 3 months. Cardiologist did tests and found that I had Artrial Fibrillation, put me on blood thinners and told doc doze of beta blockers. After 4-6 weeks I was feeling much better. Still waiting for an endocrinologist appointment. Doze of Carbimazole and beta blockers have been halved. I am now feeling a bit sluggish, have aching shoulders and a terrible itch. I don’t know any of my blood results, should I be asking and tracking them. Any info from anyone in same situation would be helpful

[SlowDragon Administrator]

Bloods should be retested regularly.....TSH, Ft4 and ft3 plus vitamin D, folate, ferritin and B12

Low vitamin levels are very common

Was Graves definitely confirmed by high TSI or Trab antibodies test?

Need to test TPO and TG antibodies too to check you don’t have Hashimoto’s

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

[Boaby in reply to SlowDragon]

Hi I was just told by doc that I had Graves Disease as blood tests confirmed I had and he would refer me to endocrinologist, which I am still waiting on appointment. I am new to all this and just accepted docs diagnosis. At next appointment what should I be asking?

[SlowDragon Administrator in reply to Boaby]

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 both TPO and TG thyroid antibodies tested (for Hashimoto’s and can be high with Graves) .

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 diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

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...

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

If TPO orTG antibodies are high this is usually Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). These can also be slightly raised with Graves’ disease

Hashimoto’s frequently starts with transient hyperthyroid phase....and if all four thyroid antibodies have not been tested .....early stage Hashimoto’s can be mistaken for Graves’ disease

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's and Graves

Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested and TSI or Trab at least once .

Often GP is not able to order TSI orTrab....only an endocrinologist

Link about thyroid blood tests

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

Link about antibodies

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

Hashimoto’s

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

List of hypothyroid symptoms

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

Here’s a post from yesterday.....GP and endocrinologist Assuming Graves’ disease....actually Hashimoto’s

healthunlocked.com/thyroidu...

[Buddy195 Administrator in reply to Boaby]

Definitely get all your antibodies checked. I use Medichecks as then you are 100% in control of tests and results & not reliant on your GP/ Endo. I was initially diagnosed by my Endo as Graves, but on following forum members advice I questioned this & antibodies clearly show I now have Hashimotos.

You will get lots of great advice on this forum- keep posting if you need any further support/ advice. I’ve learned so much from listening to others here.

Best wishes to you.

[pennyannie]

Hello Boaby

Welcome to the forum.

First and foremost just check with your doctor that you do have Graves Disease and that you have tested positive with a TSI or TRab Graves antibody test.

It will be a good idea to ask for print outs of all your blood tests, so you will learn how to read them in relation to the drugs you will be prescribed.

Carbimazole is an anti thyroid medication and blocks your own thyroid hormone production.

Please make yourself aware of the of symptoms that this drug can cause and there is an alternative anti thyroid drug called Propylthiouracil, PTU for short, as you have mentioned itchiness and might be more comfortable on the alternative medication.

There is a possibility that this drug might have been at too high a dose and blocked too much of your metabolism and as you now say you feel sluggish - since you have just had a dose reduction, give yourself a little time to rebalance and adjust to the new dose.

Basically your thyroid has been the victim of an attack by your own immune system and being such a major gland the symptoms experienced can be increased metabolism, fast bowel, excessive hunger, eating more but loosing weight, insomnia, anxiety, nervousness, eye issues, unable to slow down but exhausted as you can't turn off and relax.

There is a very good chance your vitamins and minerals will have nosedived, as your body clock is running too fast for the breakdown of nutrients, and it would be wise to have your ferritin, folate, B12 and vitamin D tested. These need to be kept at optimum levels which isn't just being somewhere in the NHS ranges that doctors work to.

If you do have Graves Disease there is generally a period of 15 months where in the endocrinologist will try and balance out, with medication, your thyroid hormones and bring you back into range with a view to ' find remission ' and or, ride out this first difficult phase of the disease.

It is an auto immune disease and there is probably some genetic predisposition and read it can be triggered by a sudden shock to the system like and unexpected death or a car accident.

Graves does tend to be a poorly understood and badly treated auto immune disease and I would suggest that you start reading up on your condition with a view to having some input and control in your future treatment.

In addition to this amazing website I suggest, if you do have Graves, to also dip into the Elaine Moore Graves Disease Foundation website in the US.

Elaine Moore by profession a medical researcher, and she has the disease and has become a leading authority in all things auto immune and Graves.

I'm with Graves Disease diagnosed 2003 and had RAI treatment to ablate my thyroid in 2005. I deeply regret this action and didn't know any better at the time.