Weight gain on carbimazole

[Woodfield73]

Hi, I have been diagnosed with hyperthyroidism and graves last year and since then I have put 2 stone on in less than a year, wondered if anyone has had the same issues , I'm on carbimazole.

[Valarian]

I’ve put on some weight, although as yet, not quite as much I lost.

I think part of the problem is that while I was very hyper, I could eat anything and not put on weight. As my metabolism slowed down, my appetite has been slower to follow !

There were also quite a few months when I really wasn’t up toop much exercise, and it’s been difficult to get back into the habit.

[Woodfield73 in reply to Valarian]

Thank you for your response it has helped, I'm wondering whether I can play around with the dose a little to maybe speed up my metabolism a little and see if it helps.

[Millea in reply to Woodfield73]

Hello - I was diagnosed with Graves in 2015. At the time of diagnosis my thyroid was out of control. Symptoms were heart palpitations, hair loss, brain fog, painful joints (esp. legs), chronic fatigue, shakiness, hot flushes, freezing cold, eye problems (later diagnosed as thyroid eye disease) etc etc. In effect - a walking wreck! Once diagnosed - I was on carbimozole and propranolol plus various treatments for the eye disease. I won’t bore you with the long bumpy road of dealing with endos who were at times down ‘right dangerous’ through ‘less than useless’ to ‘okay’, but finally I have my thyroid under control. I have more energy, no palpitations, temperature controlled, hair grown back etc etc. However, I did gain 2.5 stone once I started carbimozole. I went from a size 8/10 to 14/16 and I understand completely how demoralising this is. My hormones have now been under control for about 6 months and I have had to adjust to the fact that when I was hyper my body was burning calories at a falsely fast rate and so, now that it is slowed down I have to adjust to that. I now eat less than I did before but a much healthier diet. I don’t eat wasted calories such as processed food and instead eat loads of veggie and fruit. I no longer eat meat and once a week eat fish. The rest of the time it’s a veggie diet. I avoid gluten and drink loads of water. I’ve also started increasing my activity, which I can now do as I’m not exhausted all the time. My advice is please don’t use your carbimozole dose as a weight loss aid. Being hyperthyroid was not good for your body and it was damaging you internally in a multitude of ways - in ways you couldn’t see. I know, believe me, how weight gain can effect your self image - but your long term internal health outweighs this. Since taking a long hard look at my exercise and diet habits I’ve lost half a stone and continue to lose weight and I’m now down to a size 12. If the dose you are on has helped to control your thyroid hormone - please don’t play around with it.

[Valarian]

The problem is, your best chance of beating Graves' is to become euthyroid (within range) and stay there. Living with a galloping metabolism isn't viable in the long term, for one thing, you could end up damaging your heart.

How much carbi are you on, when were your last tests, and do you have the results ?

[Fruitandnutcase]

I read that you go back to your pre Graves weight. I was hyper for a long time before I was finally so ill it was obvious what was wrong and by that time I had lost masses and masses of weight.

I thought ‘sure you do!’ I want, I’ll eat carefully etc which I probably did but looking back I was eating a very carb heavy diet and I discovered later refined carbs are not for me so perhaps if I had cut them out back then I wouldn’t have put 9n so much weight. I don’t know though.

The last thing on earth I would do is mess with my carbimazole dose though.

Post your blood test results for all to see and comment on. Do you know what your B12, vitamin D, ferritin and folate levels are as well as your thyroid results and what are your antibodies like now?

I went totally gluten free a couple of years ago and have totally reduced my thyroid antibody levels. It might be better to do that than to start messing around with your carbimazole.

[Woodfield73 in reply to Fruitandnutcase]

Thank you, I will post my results when I've had them done tomorrow and see what people think, to be honest I thought everything was under control but the tsh level isn't right which does concern me a little and I can'tget my head around it at all.

[Fruitandnutcase in reply to Woodfield73]

Good luck tomorrow 😊

[viccole in reply to Fruitandnutcase]

Good to hear that a gluten free diet has helped balance / maintain thyroid balance. I have just started on gluten free in the hope that when I come off Carbizamole I can manage through lifestyle - diet and exercise.

[Claudia_Leonor]

I had Graves in 2008 and unfortunately I developed the worst allergic reactions to Carbi and ended up in a hospital for some days under full-time observation... the worst experience ever (that is another story). A couple years have met a woman whose sister died from Carbi allergy (in Denmark).

Meaning, one DO NOT PLAY with drugs, especially a complicated one as Carbi. Carbi can cause several reactions. The dose has to be well monitored and this medicine can not be used as means for weight loss.

If Carbi is working for you, controlling your hormones level, you are one of the lucky ones! You may have to starting taking some Levo. A lot of people on Carbi eventually start taking some Levo. I am not sure how this works, but there are plenty of those cases here on HealthUnlocked.

The important is:

Carbi is a pill and a non extreme way to control Graves. You dont want to mess up with it. If you react badly to Carbi, your next step is radio iodine treatment (one I did) to kill you thyroid or surgery to remove it... You don't want any of those... Trust me.

Remember, those easy weight loss years are gone. You have a serious autoimmune disease now which include several life threatening complications such as elevated heart rate and palpitations.

Eat smart, take supplements (if you need) and follow your thyroid every 4-6 months. And welcome to the club.

[Woodfield73 in reply to Claudia_Leonor]

Hi, Thank you your reply it sounds like we had very similar symptoms and you have experienced the same issues with endocrine, being either useless or just Ok, I'm pleased to hear that weight loss can be achieved but more importantly to stay a good healthy weight and eat a healthy diet makes me feel a bit more reassured, I'm just a little frustrated with endocrine as I seem to get different stories every time I see them, they have not really talked about my tsh levels but my gp is concerned as they are very low at 0.02 but I'm going to discuss this with endo tomorrow as have an appointment with them and hopefully I will get some answers from them, I don't understand how they can say I am stable on carbimazole if my tsh is clearly saying everything is not as it should be, Thank you so much for your help and advice.

[Valarian in reply to Woodfield73]

TSH stands for 'thyroid stimulating hormone' - it tells the thyroid to create more hormones. If you are hyper, it can be vanishingly low, and it may take a while to bounce back once you've started treatment. The most important things are your thyroid levels, and you should have FT3 and FT4 measured every six weeks or so. The endo will use your current levels, plus possibly the graph from your previous tests to this one, to decide what dose of carbimazole you are on. If you ask for a copy of your results tomorrow, and publish them together with your carbimazole dose, and where that has been left the same or reduced, we may be able to help you further.

GPs (rightly or not) tend to use TSH alone when monitoring people who are hypothyroid, which is their main exposure to thyroid disease. This means they can get a bit worked up when it's well outside range.

[Woodfield73 in reply to Claudia_Leonor]

Thank you for your advice, I spoke to a lady where I worked who said similar to what you have, she was extremely poorly on carbimazole and had to come off it and in the end had her thyroid out, I am starting to wonder if maybe this is the way forward I'm not too sure.

[Claudia_Leonor in reply to Woodfield73]

Don't think about it now. If besides the weight gain you are feeling well under Carbi, keep it going and feel the luck.

Once Carbi becomes a problem then you have very few options. The other drug acted on me the same way as Carbi and I had no alternative but Radio Iodine or surgery. I was on steroids and could do a thing because my heart was literally exhausted.

Make new blood tests and maybe your future includes adding Levo to your daily routine (besides Carbi). It happens to many. I was prescribed 2 years of Carbi... but I couldn't take it... I almost died, I had a weird sort of paralysis/shock.

Anyway. Go out there and look for a GP or Endo you can talk to and present your worries. I had a lovely Endo, he was amazing and he guided me into the dramatic life after Radio Iodine...

[Valarian in reply to Woodfield73]

This might be the best choice for you in the long term, but I'm just wondering why you think Carbimazole may not be right for you ? So far, you've only mentioned weight gain. If you have to have your thyroid removed or zapped with RAI, you are likely to be hypo for the rest of your life. While this can be treated relatively easily with levo, you're just as likely to find it difficult to lose weight while you're hypo, if not more so.

[Millea in reply to Woodfield73]

Hi again. A couple of things have occurred to me as I follow this thread. Firstly, I notice that you refer to endos as ‘they’ - does this mean you are seeing a different endo each time you have your regular endo appointment at the hospital?This was an issue for me and after 18 months of it and with total frustration (every time I went the different endo tried to change my treatment and between them they ended up impeding my recovery) I asked my Gp to write and ask that I see only one (which I named) for all my future appointments. This has made a real difference - the continuity has been successful and I have been able to build a relationship (to some extent) with one person. Just a thought. Secondly, if the carbimozole is slowly (and it can be a slow process) bringing your hormones under control and you are not experiencing any adverse reactions to the drug - you should try and stay with it. Iodine treatment and total thyroid removal are not a solution and should be the last resort. Once your thyroid is removed completely or destroyed by iodine treatment - you are, from that point, having to artificially replace the hormones. If you are slowly getting better results with carbimozole and have been fortunate not to develop Thyroid Eye Disease then you should continue with that. As long as you have your thyroid there remains the possibility to either stabilise it or for your Graves to go into remission. Removal or iodine treatment should always be absolute last resort when all else has failed. This is partly why I became exasperated with the endo dept at my hospital (Whittington - North London) as they kept tweaking and messing with my treatment - often only looking at half the picture whilst at the same time constantly saying they could whip out my thyroid, if I’d prefer. I felt that this was a simpler solution for them but definitely not for me - as I’m the one who would be left with a life long condition that would then require medication for the rest of my life. Remember you have a thyroid for a reason - with good consistent treatment, good diet, exercise and sleep you could stabilise it and get it to work for you not against you.