Graves disease and a multi-nodular goitre: On low dose carbimazole, but now GP only testing for TSH annually?

[Scavendi]

Hi

In April 2017 the endo consultant discharged me back to my GP (as I didn't want radioactive iodine treatment).

As my Graves had recurred when I stopped carbimazole the previous year, the consultant said I needed to take carbimazole for life, with 3 monthly blood tests.

Since then I have been on 5mg carbimazole on alternate days, and 3 monthly testing of TSH only - by the GP. He said he can only test for TSH and this is adequate.

when I went for my last blood test I was told that my TSH should only be checked annually now? Is this OK?

Thanks

[asiatic]

Were your TRab antibodies tested to confirm Graves ? If so were you warned to look out for thyroid eye disease ? Did you have RAI upstake scan to check if the nodules were hot or cold ? My scan showed diffuse uptake and after starting carbimazole the nodules disappeared. Many people will relapse if not kept on carbimazole long enough (usually 18 months )

You are never " cured" but remission is still possible. You need to be titrated off meds slowly not just stopped. I would compromise with your GP for 6 month checks of TSH and fT4 as long as you are feeling ok.

[Scavendi in reply to asiatic]

Thanks, though the GP will only test for TSH. When first diagnosed in 2014 I was told I had thyroid peroxidase antibodies..

I was told to watch for eye disease, and so far no problem there.

But I didn't have a goitre at first. No scan apart from an ultrasound on the goitre, but no biopsy was taken as I was told the nodules were OK.

[asiatic in reply to Scavendi]

I don't understand how your GP will know if you are hyperthyroid unless he measures at least fT4.

In Graves your TSH is likely to stay low because of the antibodies.

[pennyannie]

Hey there Scavendi

Just to say, Graves is an autoimmune disease and as such it is for life.

You can help yourself to try and lower your antibodies thereby reducing your symptoms.

I read recently that there are trials taking place with a vaccine that will "kill off " the Graves antibody - I think it was mentioned in the British Thyroid Foundation.

Graves Disease A Practical Guide by Elaine Moore is a very good reference book -This lady has the disease and went though RAI ( something not recommended ) - There is also a very comprehensive website, ( USA based ) within which you'll find sections on alternative and natural solutions that you can implement to assist you in living with Graves Disease.

elaine-moore.com

[pennyannie]

P.S. Hey there, just thinking -

I would plan on getting T3 and T4 tested along with the TSH. Just so you can keep track of where you are when on any particular dose of medication, and this would also apply to vitamins and minerals.

If your body has been running fast, there's a good chance you haven't been able utilize

nutrients from your food, and you also need to stay on top of this as well.

And yes, if neither your endo nor doctor will oblige, it will be private blood testing, for all or some of the above, as detailed in full on this amazing website.