how long can I leave it until I request a dose drop in carbimazole?

[Lisa254]

Hi,

I'm on 5 mg of carbimazole for the last 6 weeks my bloods where done 3 days ago....

Tsh 2.71 (0.27-4.2)

Ft4 16 (12-22)

Ft3 4.6 (3.1-6.8)

My results from Feb when I was on 10mg one day and 5mg next were

Tsh 3.95

Ft4 15

Ft3 4.4

I do feel so much better on this lower dose but I'm not 100 %. I am phase returning back to work but I can't seem to shift a groggy head it just feels muzzy, I am trying to read things at work and it just doesn't go in 🙄 I also have dry patches appear on my face and body and feel like my digestion is quite sluggish making me feel nauseas. On the plus side I am more myself I have been able to excercise short run,walks and low impact hiit sessions which help my low mood. I feel if I dropped my dose again I would feel even better but is it too soon? How long should I wait between dose drops?

Back in September I had antibodies test and it showed slightly elevated antibodies, very mild graves and very mild hasimotos at the same time!! To achieve remission or to come of carbimazole do these antibodies need to be back in range and when should I request a retest? (I have been on carbimazole since may 2017 and my thyroid has been in normal range since June 2017) .

Thanks ☺️

[Fruitandnutcase]

I was on block and replace for a year and when I saw the endo first he expla8ned all the ways Graves was treated then he said they used the ‘quick way’ which was block and replace and that took a year. Much to my surprise it took exactly a year. Gong by that I imagine it takes a bit more than a year to treat by titration but I don’t know for sure.

My antibodies were never tested after the first time. I’m not sure if doctors ever want to test them once they’ve decided you have an autoimmune thyroid condition.

I only know that going totally gluten free has caused my antibodies to reduce massively over the past couple of years because I tested myself at regular intervals to see if going GF would work - it did! So I’ve never gone back to eating gluten.

[Lisa254 in reply to Fruitandnutcase]

AH that's great to hear it has made such an impact on your antibodies. Someone told me on here to go gf back in November (it may of been yourself 😀) which I have been very strict with along with soya too so fingers crossed!, I don't know why I haven't been put on block and replace though!

[Valarian in reply to Lisa254]

It seems to be down to the local thyroid clinic practice whether they go for B&R or titration. There are various research papers if you trawl the internet, and the approach chosen doesn’t seem to have any effect on final outcome.

With B&R, you obviously take two medications rather than one, and will be on a higher dose of Carbimazole for longer. With titration, you will probably have more blood tests, and it may take longer to stabilise your thyroid levels., because as the dose of carbi is titrated (reduced) , your thyroid can take off and do its own thing again.

[Fruitandnutcase in reply to Valarian]

I don't know but I wonder if totally blocking your thyroid and then adding in levothyroxine gives them more control over your treatment. Once they get your thyroid production right down I think it might be easier to build it up to a normal level because your thyroid isn’t really doing it’s own thing but like I say I don’t know for sure why some places use B&R and others use titration.

I always felt my treatment was done by numbers, I often felt that I couldn’t see the point in going to see my consultant because they had a formula and all they really needed was my blood test results, then depending on what they found they would up my levo and then test again after a few weeks.

[Kari55 in reply to Fruitandnutcase]

Fruitandnutcase, how often do you test your antibodies?

[Fruitandnutcase in reply to Kari55]

I started with every three months - it’s not cheap but I wanted to know what was happening. I started because I was told that should I relapse they were wanting to give me radioactive iodine and I was not impressed with that considering I had never had my T3 tested. It might not matter but I felt I wanted a full picture before they did anything else. I didn’t want RAI anyway. I saw my GP and said that if I relapsed I wanted to go back on block and replace, could the hospital insist on rai - nope, or could they refuse to treat me - nope. So I went off and got on with life. Then I developed inflammatory arthritis a couple years ago, yet another autoimmune condition to add to the ones I already had and I knew that people on here who had Hashimoto’s had had success with going totally GF and thought it would be worth giving it a try.

After three months I did my first blood test and found the autoimmune antibodies had dropped, after that there was no way I was going to go back to eating gluten. I probably test at four monthly intervals now.

[Kari55 in reply to Fruitandnutcase]

We will try my husband’s endo to check his antibodies in a month or so as he is now gluten free for nearly 2 months. He goes privately so hopefully they will be ok with that. When he asked his endo if diet could help with antibodies she said “No”. His ophthalmologist said exactly the same. It would be good to prove them wrong.

[Fruitandnutcase in reply to Kari55]

It would indeed. It would be really marvellous to prove them wrong and make them eat their words. I’ll cross my fingers for you. I think many people with Hashimoto’s are finding that going GF has helped. and I’m sure there are people on here who have been told by their doctors to try going GF. I’ve noticed my C reactive protein has come down a lot too so I’m convinced it’s being GF that’s done it. Good luck to you and your husband, let’s hope he can blaze a trail and convince his doubting endo and ophthalmologist 😉

[Valarian in reply to Fruitandnutcase]

With titration, it seems more likely to take a year to 18 months.

[Rmichelle]

Hi lisa😊😊 i have had dose changes every 6 weeks, i would request to drop again to 2.5mgs to bring down your tsh and raise the free3 a little-if it were me. I have been on 2.5mgs for the longest time. But as you know im stretching this dose until endo appt in 2 weeks and then i want rid and try 1.25.😆

I had very dry facial skin when i was on 5 mgs but within 2 weeks of being on 2.5mgs it disappeared, it was like abit of eczema but all well now.xx

[Rmichelle]

My endo would not do block and replace as different area hospitals do different things-thats what i was told.xx

[Amymarg]

Hi

I have graves and take 40mg of Carbimazole daily (increased from 30 due to 'stubborn' thyroid), and a beta-blocker for palpitations. My symptoms are very similar to yours, with the groggy, fuzzy head. Last year, my dose was dropped too rapidly, which has made my levels go worse than ever. My endo has advised that I continue on a high dose, and I'm monitored every 6-8wks at present. In a nutshell, I can't advise you, obviously, but in my experience you can drop the dose too quickly and be back at square one or worse, so maybe wait until you next see your Endo? Hope you feel 100% soon!

[Valarian in reply to Amymarg]

I’m in a similar position to yourself Amymarg, and would also advise against dropping the dosectoo soon.

[Lisa254 in reply to Amymarg]

Thanks amymarg are you still able to work with your muzzy head? I managed to speak with my endo via the secretary, he said I should stay on 5 mg or drop to 2.5mg if I was still having side effects as I’m coming up to 12 months now on carbimazole and I have been in normal range for the last 11 months so fingers crossed 😬 but if it means I can get back to work and normality!.... I hope u can start titration again soon and get rid of some of these nasty side effects soon 😊