Finding and maintaining right T4 level on Carbimazole

[viccole]

Wondered if anyone had advice on for me. I have been diagnosed with Graves’ disease and have been on Carbimazole since May. My stats have changed as follows:

April 2018 FT4 85.8 / FT3 30.5

May 2018 FT4 22.6 / FT3 7.3

June 2018 FT4 18.2 / FT3 4.3

July 2018 FT4 15.0 / FT3 4.2

I feel my ‘happy’ zone is the upper end of the normal range (FT4 12 - 22.0). This is where I feel emotionally happy and energy levels are best. Does anyone have advice on how to get back to that zone and maintaining it?

I started on carbizamole 40mg per day, currently on 10mg per day and working my way down.

Thanks

[Valarian]

Hi Viccole

Assuming you have Graves’ (did you have antibody tests ?), the main focus for now will be to keep your thyroid suppressed. Although your thyroids levels appear to be coming down nicely, the last thing you want is to drop your Carbimazole dose too soon, and have your thyroid levels take off again.

If you’ve got Graves’, it can’t be cured but it can go into remission. To stand the best chance of achieving remission, you will need to stay on Carbimazole for at least twelve months, and maybe as long as eighteen. It really is very easily days yet.

Good luck - but please be patient !

[viccole]

Thank you, so are you saying stats won’t go back up until carbizamole is reduced further? Or on maintenance dose? Any ideas why I would be feeling light headed / dazed fuzzy head? Thanks

[viccole]

Oh and Endo said too soon to retest antibodies. Is that right?

[Alexkjones]

Hi. I am 4 years into graves now. It’s been a journey. My remission failed so I am still on carbimazol 2,5mg a day now. There is a lag time with the meds too. I suspect your t4 will drop again at your next blood test possibly. You will learn the symptom feelings as you go on your journey. Some can feel really shit and others okay. The fuzzy head thing for me would make me think to drop the carbimazole level it’s a balancing act and the doctors don’t always get the timing exactly right. It’s likely you will overshoot to a bit underactive and all the grotty symptoms that come with that. But then they will correct the dose and you will balance out. Just grit your teeth and ride the waves. You’ll see what I mean when the time comes. It took me 4 years to find the right balance for me. But even now I’ve just had a tsh reading of 2.75 which is too high for my happy place. Good luck and if you have any more questions just let me know. Alex

[viccole]

Thank you Alex, yes I think it is due to the dose needing an adjustment. Currently I'm tested every 4 weeks, given the movements, would be better to request every 2-3 weeks? And if you go below the normal range - is it just a reduction in dosage that brings you back into range? My TSH was 0.02 and last test it was 0.01. Thanks for your support, it's good to hear other people's experiences. Have you tried a gluten free diet as well?

[Valarian in reply to viccole]

Unfortunately, things aren't that tidy. Your Graves' could go into remission all on its own, or it could take off again as the dose is reduced. It's very difficult to get the dose exactly right. However, 10mg/day is more than a maintenance dose, so all things being equal, you'd expect to see your thyroid levels continue to drop. Do you know what the range was for your FT3 ? That may still be higher than the endo would like (which will typically be a few points below the top of the reference range anyway).

4-week testing is pretty frequent - I doubt if you would be able to get it done more frequently on the NHS. Right now, the aim is to get your Graves' into submission rather than maintain particular thyroid levels. I would be wary of messing around with dosage yourself, the only way to be sure of your thyroid levels is to have a blood test. If you do begin to feel very different, especially if you feel cold in the kind of weather we are having at the moment (which may mean that you have overshot the range and are slightly below), you can always ask for your next test to be brought forward.

I was told my antibodies would probably be retested when they consider taking me off Carbimazole. I've never heard of them being tested regulalrly, and antithyroid treatment is in any case based on FT4 and FT3 levels.

They don't usually bother too much about TSH until your thyroid levels have been stable for a while - certainly, it's quite usual for TSH to remain suppressed for several months. Normally, TSH is produced in the pituitary gland, to tell the thyroid to produce more hormones. With Graves', the antibodies work to mimic the effect of TSH, except that they don't stop signalling when there is sufficient thyroid hormone available, so patients end up hyperthyroid and the TSH signal isn't required.

Regarding lightheadedness, does it go away if you have something to eat or drink ? Have you lost weight ? If your metabolism is still running fast, you will burn more calories than you did before you were ill (this stage doesn't last long !)

[viccole in reply to Valarian]

Hi thank you. FT3 range is 3.1-6.8 so firmly on the right ball park. I’m being treated privately so could ask consultant about frequency of testing. Dizziness is actually worse after eating. Haven’t lost weight, gained 3/4kgs which is fine! So feel my diet/food intake is right as appetite decreased.

[purple64]

It's such a fine line to get the meds right. Mine were reduced after a year from 30,20 to 10 then down to 5. But then I went hyper again and have been on 10 since December last year. I get a few days when I really don't feel well and I am dizzy most days. Monday this week I thought I was going to faint when in town but luckily managed to find somewhere to sit until it passed. I also find that I have to think a bit more slowly to take in and compute what I've been told,asked or read. If you were diagnosed in May this year it's very early days. I was diagnose April last year and I am still learning and adjusting to this disease.

[Valarian in reply to purple64]

I went hyper again at around the same time, but I haven't experienced dizziness since the first six months or so after diagnosis. I can imagine the novelty is beginning to wear off !

[purple64 in reply to Valarian]

Oh it is and the GP or endo just shrug their shoulders !

[viccole]

thanks everyone, just wanted to check if you had felt general fuzziness or light headedness whilst on Carbimazole? My endo doesn't think it's a side effect of the medication, so interested to know your views? Have just had dosage reduced further, so could it be related to having been on too high a dosage? Thanks