I have Graves and responded very quickly on carbimazole and my graves has been under control for 15 months and recently been on 5 mg every second day . Since my Trab antibodies had gone from 3.6 to 0.8 my endo thought it was time to try to go off medication . I been off 2 weeks but my tummy has been really aching past week with lots of gas / pain with both loose stools / constipation. I eat really healthy . My heart rate seem to fluctuate and quite high too . Since only 2 weeks since I been off and was so stable , I am confused if something else or if any one had these “ withdrawal “ symptoms after stopping ? Love to hear your stories . Thanks !
Written by
Cris104
To view profiles and participate in discussions please or .
Can you please share with forum members your blood test results and ranges at diagnosis - and the antibodies found in your blood - any TPO- TgAB - as well as the Graves TRab?
When the thyroid comes under attack from your immune system various sets of antibodies can be activated and over range - but if Graves is present with o/range TRab - then Graves treatment takes precedence and the other antibodies ignored - for want of a better word - since there is no treatment for them anyway - and I'm just thinking maybe there is another AI thyroid disease causing these stomach issues ?
When diagnosed Graves did you have any symptoms to those you are now writing about ?
What are your most recent TSH + Free T3 and Free T4 readings and ranges and when ?
If you TSH has bounced back into the range I doubt it is Graves Disease.
The NHS generally allocate a treatment window of 15-18 months with an Anti Thyroid drug in the hope this is long enough time for the immune system to calm back down again and the thyroid reset itself without the need for any drugs.
You might like the read the most recent research we have :-
Presumably you started on a higher dose of carbimazole & dose was adjusted down.
Do you have recent TSH, FT4 & FT3 results. Hopefully doctors had been adjusting by FT4 & FT3, we do hear of drs going by TSH but this can be an issue because TSH can be very unreliable & not reflect what thyroid levels are doing.
Were those symtoms similar to when you were hyper before or are they new?
Ive not heard of carbimazole withdrawal being the cause of such symptoms but if levels are rising without the usual control it might have started hyper symtoms.
Also, some report issues with gluten occurring around the same time as graves diagnosis. Have you had Ceolic screen. You need to be eating gluten when test is taken. A gluten allergy will be detected, but a gluten intolerance won’t be. That’s why it’s recommended that a strictly gluten free diet is trialed even if test negative.
Graves has been very well controlled . Started on 40 then 30, 20, 10 then 5 .. then 5 every second day , Been stable for a year . Trab went from 3.6 to now 0.8 and my endo asked me to try coming off carbi now ( 2 weeks ago ) . I tested negative for celiac . Symptoms started a week ago and could be unrelated ( hopefully ) but wanted to ask if anyone had experienced some symptoms going off ( doubt graves is back so soon ) before body is adjusting ? Thank you so much 🤍
Hi Cris104, I have Graves’ disease but I no longer take medication as I’ve been in remission for nearly 12 months. I was on block and replace and was told to stop taking all medication immediately which terrified me at the time, I stopped taking it and the first 14 days were awful I felt like all my hyper symptoms were coming back, stomach aches, sweating, no energy and heart beating faster and really anxious. After 2 weeks everything settled down and I started feeling so much better and still feeling fine now so it could be that, hopefully it will get sorted, I think my body just went through a withdrawal phase as I had been on block and replace for 18 months, just wanted to share my story.
thank you so much for this reply ! This is exactly how I feel . I been stable for a year and been on 5 mg every second day ( started on 40 g 14 months ago ) My trab antibodies went from 3.6 to 0.8 and my Endo thought it was time to try to go off . I also have RA etc and negative on celiac . My tummy has been so achy and lots of gas / constipated then loose etc. heart rate also fluctuates which started a week ago . I now been off carbi for 2 weeks and taking blood in 2 weeks again . Thank you so much for this ! So incredibly helpful since I started to get worried it something else . Did you also go off from 5 mg / every second day ? Lots of hugs and thanks !
Hi Cris104 I am no expert but I had thought an important indicator for withdrawing Carb treatment was consistently in range/significantly reduced FT4/FT3 values as Graves antibodies are always likely to be present to some degree with Graves. What were your last TSH/FT4/FT3 values?
as mentioned . My graves been very well controlled for over a year . Was down on 5 mg every second day . Blood was taken mid January - then decision was made to try to get me off . Just wondered if anyone had flare ups after stopping medication before body adjust etc since hearing that some do .
Hello there,I have Graves disease and was on levothyroxine and carbimazole as block and replace.Unfortunately I never achieved remission as when I stopped my medication,within 2 weeks my T4 was back up in the 60's.If you think your hyperthyroid symptoms are back(mine were within 2 weeks) for example loose stools,fast heartrate etc,I would advise you to contact your consultant for a blood test to check,just to be on the safe side.
Thank you for your kind reply . I wrote to my consultant today ( he is amazing ) and asked for advice . It was planned for me to do blood 4 weeks after stopping ( it’s now 2 weeks ) but might do blood sooner . I also have RA and symptoms can be confusing but never had this much abdominal pain / gas etc etc and high rate has been all over the place . My endo was so sure I would be in remission since I have been under control for long time and also never had a goiter . May I ask if you were on 5 mg every second day before going off ? Also what was your trab antibodies ? Mine went down from 3.6 to 0.8 why we decided to try going off . I am now only on my RA medication but usually handle those medication well why don’t explain all my symptoms . Thank you so so much
Hello again,I was on block and replace where they block your thyroid hormones with 40mg carbimazole and then replace it with 100mcg levothyroxine (that was my dose).I had tried titration with just the carbimazole but it was difficult to control my levels,they were too high,then too low.To try for remission on block and replace you just stop the medication dead,that is just stop taking it all together, no reduction or anything. As for my antibodies, they were only ever tested once at the beginning and never tested again.I'm glad your consultant is looking at doing bloods sooner.It might be just as you say,a settling down period,or maybe to do with your RA but bloods would give you reassurance.Wishing you well with everything.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Do symptoms return when coming off carbimazole 
Graves disease symptoms normal TSH
Graves, on carbimazole for 10 months
Graves symptoms 
Graves Disease - Carbimazole 
