Hi Elaine,

It's been quite sometime since I've posted a question on your forum. It's good to see that you are still here to give support and advice.

I've now had Graves' disease for just over seven years. I can't quite seem to get this disease to go into long term remission. I have relapsed a few times. I'm now at a point where yet again I'm on a very tiny dose of Carbimazole, 0.625mg every other day. My GP is very good at giving me 4 weekly bloods, which has helped my levels stay relatively stable. My levels are now going too low, but my GP is unfamiliar with the add back/ modified block and replace protocol, which you had previously suggested to me two years ago. Would it be feasible for me to reduce my dose of Carbimazole to 0.625mg every third day? I'm at a real loss as to what to do and I can find no research papers to show my GP regarding modified block and replace. I am concerned about the possibility that I will continue on this cycle of hyper/ hypo indefinitely.

I eat a mainly organic vegetarian diet, no processed foods, wheat and gluten free, no alcohol, exercise most days, gym or walking. I continue to take the following supplements: Acetyl L carnitine, vitamin B12, B Complex, Ubiquinol and Vitamin D. On the whole I feel very well.

Would you suggest being tested for my TRab levels?

Here are my blood results since Jan 2017:

Reference ranges: FT4 (11-23) FT3 ( 3.5-6.5) TSH: (0.35-5.50)

31/01/17 FT4: 21 FT3: 7.5 TSH: <0.05 Carbimazole increased from 2.5mg to 3.75mg

24/02/17 FT4:15.4 FT3: 5.1 TSH:<0.05 Carbimazole decreased to 2.5mg

27/03/17 FT4:13.6 FT3: 5.1 TSH:<0.05 Carbimazole decreased to 1.25mg

24/04/17 FT4:16.2. FT3: 5 TSH: <0.05. Carbimazole decreased to 0.625mg

24/05/17 FT4: 15.9 FT3: 5.7 TSH: <0.05. Carbimazole decreased to 0.625mg every other day

28/06/17 FT4: 16.9 FT3: 4.7 TSH: <0.05 Carbimazole continued at 0.625mg every other day.

25/07/17 FT4: 12.2 FT3: 4.4 TSH: <0.05 ? Reduce Carbimazole to 0.625mg every 3rd day?

Many thanks for your advice Elaine.

Karen

Hi Karen,
Sorry to be slow. My husband had some health issues that required time and surgery but he's now on the mend. And I'm finally catching up here.

While your TSH is low, that's not unusual and it may not show up for some time. Your levels on your current dose are now too low so I'd consider taking your dose every 3rd or even every 4th day, which essentially would show how you're doing without meds. You likely still have TRAb and that's what's causing the low TSH although you probably predominantly have blocking antibodies, which is why you're not hyperthyroid. This also makes the TRAb test less than helpful unless you also have a TSI level. A low TSI level would indicate remission as would a low TRAb, but when TSH is low, the odds are that you'll have an elevated TRAb result.
With your levels falling so low it's also possible to move into mild hypothyroidism, even with a low TSH. If your levels aren't much higher with every 3rd or 4th day dosing, you could probably stop meds completely if your physician agrees. In some cases TSH doesn't start to rise until 2-3 years after you've achieved remission. best to you, elaine