Hi everyone! I have graves was diagnosed back in 2013.Had a couple of relapses but have now been on carbimazole for 3 years.Was discharged 24 months ago and told I could stay on 5mg but not for how long...I've been taking 5mg every other day but felt hyper around Christmas and upped it to 5mg everyday.My question is should I go back to 5mg every other day?
TIA
Have you got any blood results to share with us? I do know people who have been on Carbimazole for 10 years and as long you feel well and have regular blood tests I think it is ok.
I only have my last 2 tsh...december was 0.57 I then upped it to 5mg a day then February was .1.26...due one in june.
Has your T4 and T3 been tested? To get a better idea we need to see what the levels are because the TSH usually lags behind. When I was first diagnosed my TSH was suppressed at 0.002 and I had been left untreated for over 2 years. You can read my story on my profile page if you are interested.
Dr asked for T3 and T 4 but lab didn't do it on both occasions..think its because tsh is in range.
That is why I have to pay for private blood tests so I use Medichecks. Even when I was admitted to hospital last year with a thyroid storm they didn't test the T4 or T3 because my TSH was in range. At the moment my TSH is 0.38 and my T4 is 22 which is top of the range and I am not on any medication and I feel well. My Thyroglobulin antibodies are 4000 and have been like that for a few years now because my thyroid is under attack. I have a multi-nodular goiter which have I have an ultrasound on every couple of years to check that none of the nodules have enlarged.
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’ disease
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, best not mentioned to GP or phlebotomist)
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 ultra vitamin
medichecks.com/products/thy...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
As lorna7 says you need fT3 and fT4 measured. Check with your doc that these will be done in June. Sometimes labs don't measure them if TSH is within range. For many with Graves TSH stays suppressed or low for many years . The fact yours is in range could mean remmission but you still have symptoms so you need those bloods to get a clearer picture.
Is it bad for me to stay on Carbimazole indefinitely?
Underactive for 2 years now
What should I do now?
