Carbimazole - weight gain

Hi. did you lose weight after radio active treatment ? and how are you now ?

Hi Alice ..i am currently on carbimazole at the moment ..please I want to know how effective radioactive iodine is cos that is way I planned going for.thanks ..Dis is my email

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Hello , i noticed that your post was over a year ago and wanted to ask you how things have evolved for you . Are you done with your treatment?

I've been on carbimazole for 7 months now and I've put on 10 kg despite watching my diet closely and exercising 4/5 times a week 😢

I am so depressed about my weight because I've always been slim and even though diagnosed as hyper , I've put on weight ever since either the illness or the meds- don't know anymore .

I would like to know if you lost weight after you stopped taking the carbimazole?

Hi Kristell

My thyroid has come back again after being in remission. I know the drill now and all my Gp wanted to do was yet again refer me to a consultant. And all he would say is remove it. So I've refused the referral and asked to be kept on 5mg of Carbimazole. Believe me I was still weary about starting up again because of my previous experience with weight gain. It's been about 4 months now and I am grateful for no weight gain. But I have been in your position when it first started with weight gain, dispite gym 5 days a week and diet. I too became depressed. However, I knew that nothing I was doing was helping my weight so I came to terms with wearing baggier clothing. In my mind this helped. I haven't had a recent blood test so I don't know my levels. But I don't feel any worst then 4 months ago. Good luck with your treatment. I took comfort in knowing I was not the only one in this position. Sometimes it's out of your control. Best of luck.x

Hi Naz and thank you for your encouraging words . I am so sorry to hear that your thyroid went hyper again and you had to start treatment again .

When you say you haven't experienced weight gain since you resumed treatment four months ago, did you lose any after you stopped first time round ?

I'm running out of baggy clothes and shopping no longer holds any appeal

Best of luck to you too x

When I was 29 I first had this illness , I never then took it that serious . I was like very thin . But fit because of my job at that time. I put on weight after a job change , I was on 50mgs of carbiz then . After a while I was in range then normal for a long time. I forgot I ever had it. Then about 4 years ago I got chronic painful constipation, I never related it to thyroid illness. This was almost every night wake up and spend an hour trying to get movement . I looked up causes on google and , feck me , thyroid illness was top of the list . Now I am 49 and back on carbiz, this time 20mg so far . Constipation as gone . I have got through that painful process of getting better . Stomach pains . I am a bit over weight think about 28ilbs. So I exercise more . But trust me , being over weight is nothing compered to , bowl pain . No one really knows how we really feel , and the things like bad dreams and panic attacts, always feeling ill, but thinking your well, my advice is to just carry on with your meds, at some point you will feel like living again . When that happens , your life will change for 100 and 1 percent better. Dont let your illness kid you .

Hi Kristell,

I can sympathise with you completely, the overwhelming feeling's that you get from the weight gain are awful. Its so hard to try to get others to understand how you feel,its something you have to experience to understand. I went through a really low point where I just cried all the time and didnt even want to leave my bed, let alone the house!

I have just come off carbimazole two days ago after being on it for 1.5 years and am so hopeful that I will be able to lose this extra weight I gained whilst on treatment and that my hypo wont come back.

Something my endo told me at my last visit before setting a date to come off these tablets was that a side effect of taking them is to gain 10 kilos on average. He said he doesnt like to tell younger females this and it would discourage them from actually taking the treatment and to be honest, he isnt wrong. I was so relieved to hear that though and know that it wasnt anything I was doing wrong and that really the tablets were working exactly how they were meant to. I hope that this is some sort of reassurance for you!

Keep trying to be positive and keeping working hard with your excercise and eating heatlhy.. there is an end in sight

That's a really interesting comment about what the Endo said about not telling people they will put weight on with taking Carbimazole and side effects could be 10 kilos weight gain.

I was on Carbimazole and put on approx 12 kilos (2 stone), now off Carbimazole and lost 3 kilos (7lbs) within first month of coming off it. The rest of the weight will come off I'm sure, but I think it will be slow.

But when I mentioned weight gain to my Endo, he was not interested and said my appetite must have increased and I was eating more - which I wasn't!

Glad you have such a great Endo, I wish a few more were like that - yes keep up the positive vibes, exercise and eat healthy, it will all work out in the end.

My graves (over active thyroid) is under control so far and all my blood tests put me back to having a normal thyroid function 

 

Hi ladies! It's not the carbimazole that makes you put weight on it's the wrong dosage! If you take too much the levels go too low causing hypo which slows the metabolism that causes weight gain! I fought with the Dr and Endo and literally took the lowest amount I could! 5 mg mostly 10 mg only for 2-3 weeks and now 2.5 mg daily! With view to coming off! The reason they wack you on a high dose is to bring you into range quickly but this causes weight gain and side effects. Just speaking from experience really. It maybe useful to control levels but is poisonous so best not to take too long! It started to make my hair fall out 👀....

I was on a high dose at first had weight gain, but even on a 5mg dose was still 2 stone overweight and struggling to lose any weight - even though I was exercising every day and eating healthy. So yes maybe high dose puts weight on, but I think constantly taking any dose will not let you lose weight.  I've also lost hair being on carbimazole.

So hoping everyone on here gets better soon and can come off the carbimazole, when they have their thyroid levels under control!

 

Hi Mallory,

So happy to hear that you are now over your treatment. Since I last posted on Patient Info, my endo has swapped my medication to Benzyl Propyl uracyl 25 mg per day because I found out I was pregnant.

The change helped me shed 4 kilos in a short period of time and now I'm in my 6th month of pregnancy and my thyroid levels are normal and weight gain for the pregnancy is absolutly normal . I should finish my pregnancy with 10 kilos of pregnancy weight if i carry on as I have been.

I don't have any appetite surges or other problems. I eat normally and try to do yoga and walking on a weekly basis.

My Gyne told me i should be on  my meds during 3 -4 months of breastfeeding and then finished ! So 2018 is looking medication free and I'm over the moon.

I hope that every patient out there finds their balance and health. It is indeed a lengthy process and very emotional.

Good luck !

I've had graves disease twice now, with a remission of 4 years inbetween. Each time I was prescribed 40mg of carbimazole per day for 6 months. Both times I successfully went into remission but with a 10kg weight gain (22lb.)

The endocrinologist dismissed my concerns saying that I would be back to my normal weight in no time.

Not true - I lost no weight after coming off the medication. Although I think the reasons for the weight gain are more complex than simply taking carbimazole.

Both times I had to diet to get back to my normal weight.

It was all very depressing, especially as my hair started falling out as well.

This last time I adopted the keto diet straight after stopping the medication - high fat and protein, very low carb - and I lost the 10kg in 12 weeks.

I have been in remission for over 2 years now and have maintained my normal weight.

I personally disagree with RAI treatment or thyroidectomy. With graves disease the thyroid is the victim, not the villain. Instead of removing the victim, they need to find a way of solving the immune malfunction instead.

After pressing for info, my endocrinologist finally admitted that you can do the block and replace treatment with carbimazole as many times as you need to without significant side effects.

So if it comes back I will just do this again, and lose the weight afterwards with the HFLC diet.

Hi Mallory

?I cant believe you have said this!  At least your Dr was honest with you.  When I asked my consultant about weight gain he said that the pills do not cause this,  I am 14lbs heavier than before I took the pills. 

S

Hi Sally, I realise I said in my post my hypo.. typo! I meant to say hyper/graves  

Not only did I gain the 10kgs but also what I lost initially.. it was so awful. I am grateful he told me this info even though it was too late.. he was a great endo! 

Just keep in mind that your health is number one and the weight will come off once you’re in remission and off the tablets. Be mindful of what you’re eating now and try to stay positive, as hard as it is. All the best  

Please I need you to enlighten me cos I'm kind of confused right now .I don't no if the RAI is the best option

Thanks Mallory, I am still struggling to lose weight.  I am doing at minimum of an hour each day vigorous exercise.  At least 3 days a week I do x 2hours.  I also pay for personal training and also pay a sparring partner one a week.  (I used to box).  I do feel a bit cheated in terms of weight loss but I am getting smaller, stronger and more solid.  When Thyroid was high I used to get a lot of hand tremors when lifting weights but I now I can lift heavy in comparison to my size.  I might be a bit heavier than Id like but If I get a flat battery at least I will be able to push my car lol !

Hi Omolara, I was offered RAI and I am glad that I refused it.  I was in remission for a long time but back on the carbimazole now.  I adjust my meds in order to feel good and in this respect I have never been compliant with medication.  If I cant sleep or get upset stomach I know that my levels are too high and I increase dose.   If my nails start to break off and I am crapping like a rabbit I know that they are too low and take less.   I feel good and generally have a good quality of life despite being a bit heavier than I have always been.  I am in control of where I am on the thyroid scale whereas this would be in the hands of an Dr had I destroyed my Thyroid.  People I know who are medicated for low thyroid levels are often in disagreement with their Dr on this issue. 

I'm do depressed at the minute as I list so much weight.... I'm a naturaly curvey 12/14 & been on 30mg of carbimazole for 5 weeks now & not put any back on as yet..... I hate it....howong b4 u started gaining the weight back?

I'm so depressed at the minute as I lost so much weight.... I'm a naturaly curvey 12/14 & been on 30mg of carbimazole for 5 weeks now & not put any back on as yet..... I hate it....how long b4 u started gaining the weight back?

m do depressed at the minute as I list so much weight.... I'm a naturaly curvey 12/14 & been on 30mg of carbimazole for 5 weeks now & not put any back on as yet..... I hate it....howong b4 u started gaining the weight back?

my experience with the medication is pure misery - i feel rotten and tired and gaining weight despite significant reduction in intake and exercising 2hrs 30mins A DAY!

I've now accepted that no professional will ever listen to me so I'm going to start smoking again after over 3 years smoke free!

I feel like i should at least die with some form of joy in life - good luck on your journey i hope it improves

i lost a lot of hair during hyperthyroid state but once on meds it stopped falling out as much - although i completely lost it one with handfuls falling out and hacked it off into a bob  i have a lot of hair generally so although nobody else really noticed i certainly did - -apart from that the meds make me chronically miserable