TSH level and over active thyroid

[Vbgr]

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

[SeasideSusie Remembering]

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.

[Vbgr in reply to SeasideSusie]

Thank you SeasideSusie. I now understand, the awful condition of hypo sound dreadful so I will be on my guard. Valerie

[SlowDragon Administrator]

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.co/tests/thyroid-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

[Vbgr in reply to SlowDragon]

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

[SlowDragon Administrator in reply to Vbgr]

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

[Vbgr in reply to SlowDragon]

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.

[SlowDragon Administrator in reply to Vbgr]

ask GP to vitamin levels first

If they won’t test, include vitamins in private testing

[Vbgr in reply to SlowDragon]

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

[SlowDragon Administrator in reply to Vbgr]

Thriva is cheaper possibly

Just TSH, Ft4 and Ft3 cheapest via Monitor my health, £26

[Vbgr in reply to SlowDragon]

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

[SlowDragon Administrator in reply to Vbgr]

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

[Vbgr in reply to SlowDragon]

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

[SlowDragon Administrator in reply to Vbgr]

Sadly many medics think Hypothyroid is “easy” .....just take this little white pill ....levothyroxine. Clearly the vast numbers of hypothyroid patients on here demonstrates ...it’s anything but easy for about many people

They are slightly more aware how tricky Graves’ disease can be

[pennyannie]

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.

[Vbgr]

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