Hello fellow thyroid sufferers, can anyone tell me what TSH means when it is getting to be near the upper limit. I am on carbimazole as a dose to keep me within the range. But the blood test only give TSH now and the range is approx. 2 to 4. I’m now 3. What will be the consequence, do I need more carbimazole or less if I get to above the limit. Thank you for your time. Valerie
TSH level and over active thyroid: Hello fellow... - Thyroid UK
TSH level and over active thyroid
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Vbgr
The higher the TSH the nearer you are to becoming hypothyroid. It would seem that you may need to lower the dose. However, testing just TSH isn't enough, you need to know what the actual thyroid hormone levels are - FT4 and FT3, TSH is not a thyroid hormone, it's a signal from the pituitary.
I think you'll find that the reference range for TSH is more like 0.2 - 4 not 2-4.
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Just testing TSH is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves
Ask GP to test vitamin levels
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Come back with new post once you get full results
Hi SlowDragon, many thanks for your in depth reply. I thought perhaps I could just omit to take the 5mg tablet of carbimazole once or twice a week and it would right itself in time. Perhaps that was just being a bit flippant.
Valerie
TSH is much slower to respond, so by time TSH starts to rise, Ft4 and Ft3 can be very low
Low Ft3 tends lower vitamin levels
I will get a medichecks for thyroid levels and see if I can get the doc to give me vitamin test, many thanks for your advice.
ask GP to vitamin levels first
If they won’t test, include vitamins in private testing
Thank you, keep fingers crossed that they will give me the test. Just looked on medichecks and it’s a bit expensive for all the tests. Things are difficult at the Moment with all the social distancing etc. But I find the most successful results come from sending a letter to my doc. I will keep in touch. Valerie
Thriva is cheaper possibly
Just TSH, Ft4 and Ft3 cheapest via Monitor my health, £26
That sounds a better price for me. I have a good diet with plenty of home grown veges and thought that was adequate for my needs with just a supplement of vit c. I feel reasonable within myself but perhaps Graves alters the process, old age doesn’t help! Valerie
When hypothyroid (If on too much Carbimazole) we tend to get low stomach acid. This results in low vitamin levels, regardless of how good your diet is
Low vitamin D, folate and B12 very common
I understand , it’s very complex this thyroid problem. Am writing to my doc who is very supportive, if he can be. Thank you so much for the wonderful information. Valerie
Hello Vbgr
Just to thought, if you weren't aware, , there is a website dedicated to all Graves patients worldwide.
Elaine Moore has Graves and went through RAI thyroid ablation back in the late 1990's and finding no help with her continued ill health started researching this poorly understood and badly treated autoimmune herself.
Being a medical researcher by profession I guess she was better placed than most of us and her first book Graves Disease A Practical Guide - was my first step in sorting myself out.
Elaine now has several books published and runs her own Graves Foundation website.
The website has an open forum, much like this amazing forum and Elaine takes an active role in replying to peoples questions privately, should the need arise.
Thank you Pennyannie, I didn’t know, but I am so lucky in one way as I haven’t suffered an awful lot as I don’t eye problems with my Graves. I refused RIA and have just been taking carbimazole till now. Being as there has been such wonderful information about how to go forward from now I am feeling confident today that I shall be alright. But will keep it in mind. Valerie