If you are in UK you are legally entitled to your blood results from your doctor. You need to ask for them.
Also people send away for a testing kit to private laboratory and pay to get blood tests. It is done with you pricking your finger to get blood sample.
Sorry you are struggling. Many of us with Graves do at first because we don't understand the disease and neither do many of the doctors treating us. Although Graves is for life it is possible with the right treatment to live almost symptom free. To reach that point you are taking the correct first steps by starting to learn about the disease and getting a copy of your blood results ( ask the receptionist for a print out ) Post them on here and your journey to better health will begin.
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
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. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have Graves or autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Have you had Graves’ disease confirmed by TSI or Trab antibodies test?
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 as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). But can be slightly raised with Graves
Graves is an autoimmune disease that is for life and is caused by something triggering your immune system to go into overdrive, causing hyperthyroidism.
I read it can be triggered by a sudden shock to the system, like a car accident or unexpected sudden death of someone close to you - my experience was that I had been physically threatened and verbally abused by a work colleague.
The thyroid, is a major gland, responsible for full body synchronisation, your mental, physical, emotional, psychological, and spiritual wellbeing, your inner central heating system and your metabolism.
The symptoms experienced when the thyroid comes under attack can be diverse, life threatening, and some simply ' odd ' but it eventually necessitates a visit to the doctor where eventually a blood test should be run to include the TSI/TRAb antibodies, unique to Graves disease, thereby confirming the doctors suspicion.
The doctor then prescribes anti thyroid medication that blocks your own thyroid production with the intention of reducing your symptoms and making your more comfortable. Depending on your symptoms a beta blocker maybe also be prescribed, and generally in the uk you are given about a 15 month window with a hospital endocrinologist monitoring your progress and running blood tests in an attempt to bring the bloods back down into range, whilst your symptoms reduce.
The NHS do not know how to control the autoimmune component of this disease so tend not to revisit your level of antibodies and at around 15 months, the patient maybe offered a permanent treatment which is to loose your thyroid to either surgery or RAI ablation. You with then become permanently hypothyroid and the medics consider that hypothyroidism is easier to manage than hyperthyroidism.
Some forward thinking endocrinologists are suggesting a better option could be long term treatment with a low dose of the anti thyroid drug a better option for some patients but currently in the uk NHS system RAI thyroid ablation is the first treatment option offered.
Whilst you are on the AT medication you may have had your dose adjusted as you levels came down back into range, and hopefully you felt more comfortable. Some endocrinologists add back in some thyroid hormone as well as the AT drug so that you don't " fall too low " and your metabolism therefore maintained.
It's a balancing act, and if you have blood test results to hand you should see 3 sets of numbers for your TSH, T3 and T4. along with ranges, and the idea to get all 3 results in the ranges, and to a level of wellness that you find acceptable.
As you are still feeling unwell, and putting on weight it reads as though you level of AT drug maybe too much, and that you are now dealing with symptoms of hypothyroidism, the very opposite of what you went to the doctor with.
If in the uk you are legally entitled to copies of your blood test results and this would be the first step as to trying to help you understand where you currently are in all this.
For background reading you might like to rake a look at the Elaine Moore Graves Disease Foundation website. Elaine has Graves and had RAI thyroid ablation back in the 1990's and finding no help with her continued symptoms, and being a medical researcher, she started her own research into this poorly understood and badly treated auto immune disease.
I too have Graves Disease diagnosed in 2003 and I had RAI thyroid ablation - a treatment I deeply regret, and I now manage lingering Graves, thyroid eye disease ( caused by the RAI ) and hypothyroidism. I am now self medicating as currently in the uk, after a thyroidectomy or ablation, you are not automatically treated with full spectrum thyroid hormone replacement and that is what I need to be able to get on with my life.
I hope this has helped a little, please do your research, and get an understanding of your very own situation.
Graves is a stress and anxiety driven auto immune disease and you may need to also be looking at your life style, diet and work situation. Maybe think a little ' out the box ' as to what works for you : yoga, relaxation techniques, and any alternative options that you find enjoyment in, and you do need to take active role in your treatment options, all of which are discussed more fully on the EM website, as well as here.
P.S.
I've just reread your question and need to add that there are alternatives to Carbimazole, one commonly referred to as PTU - Propylthiouracil : I don't know if this might be an option :
What symptoms are you currently experiencing ? Are they more hyper than hypo ?
Are you currently on any medication for anything ?
It really would help if we could see some blood test results, including TSH, T3, T4, plus the antibodies including the TSI/TRab antibody blood test for Graves, plus ferritin, folate, vitamin D and B 12. You also need to include the ranges, as although the results may be said to be ' normal ' in that they are in the accepted range, you know your are not well and are not " your normal ".
It's more about where " you " sit in the range ' that determines " your " wellness -some ranges are wide, and again, it's a balancing act and where " you " need to be in the ranges for " your wellness ' .
You might be in these ranges and be told you are normal, and not qualify for supplements or medication adjustments, but it is the fine tuning of the results within the ranges that gives you back ' you ' .
Your metabolism has been through periods of both Hyper and Hypothyroidism and this may have left you extremely exhausted and with low nutrients as no matter how well nourishing your meals maybe your body will have been running too fast, or too slow to fully utilise the vitamins and minerals essential for core strength during this difficult phase of the disease.
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Should I be referred? GP says no...history of Graves
Where to find someone to draw blood for private home testing kit.Inverness
t3.. t4.....???????????????????
please can any one tell me what a normal reading of this sort should be and what all this t3. t4 mean
In range :(
