Is this normal? I've put so much weight on since starting carmibazole then even more since starting block and replace 5 weeks ago!

[Karen72]

I was diagnosed as hyper in may last year then diagnosed with graves not long after, I was initially on beta blockers and carmibazole (50mg) I've started block and replace about 5 weeks ago and on 75mg of levo, I read a question and lots of replies about symptoms of graves and only 1 person mentioned possible weight gain, before diagnosis I lost about 7lb but since starting medication I've gained almost 3 stone, i was already ovetweight, I have most of the other symptoms that people mentioned, I'm now feeling very hyper again, I'm not sure if this is normal too, I'm due to get bloods checked tomorrow again at GPs as requested by endo, I feel very down in general and my weight gain is really getting to me, I'm finding it incredibly difficult to stay the same weight, never mind losing sorry for whinging xx

[greenginger]

Hi loads of people talk about weight loss with Graves but the reality is that weight gain is just as common or weight fluctuation. I have read loads about this condition and it is clear that it links into your metabolic rate. Therefore many lose when hyper and gain when hypo or on carbimazole due to the alteration inTSH etc.

However every person is different and if you were overweight to start with, then you were most likely consuming excess calories which could have cushioned you from excessive weight loss. I was overweight and did not lose plus I gained when on carb. This may not be the case for you and I do not mean to insult you.

[CharlS28]

Initially I lost a ton of weight but it took my docs over a year to diagnose me so I was severely hyper, and once my levels got back to normal I did put the weight back on. Second time my Graves relapsed I didn't lose any weight as I was only very slightly hyper. I agree with ginger I think everyone is different. If your weight gain is serious though it would be worth getting your bloods checked to make sure you haven't gone hypo.

[kashka]

I lost a lot of wieght When first diagnosed hyerthyroid with Graves.But after bieng on block and replace put on 3 stone.i have now lost half a stone after my treatment and have been in remission for over 2 years.Although i would like to lose a stone in wieght am finding it impossible.But just to say that i would rather be like this than when i was ill with the Graves.Hopefully you will be able to lose some of the wieght from the meds when you finish the treatment.How long are you on Block and replace for.? I was on them for 18 months.How long till you see the endo again? You can ask him/her any questions you need to .Maybe they will cut your dosage a bit as they said they would mine when i started gaining a lot of wieght quickly.Hope you get the help you need.It's so upsetting when you see the weight pile on and try everything to lose it.Good luck.

[Hidden]

Hi there

I put on four stone in three months on carbimazole with my endo taking NO NOTICE of my symptoms. You need to get copies of your blood results and post them here and also you need to get copies of all your antibody results. Graves is confirmed by the presence of TRAB (or TSI) antibodies which are TSH-Receptor Antibodies, ie they block the TSH, which is why TSH is suppressed in Graves. However, ill informed endo's treat Graves patients by trying to get a raise in the TSH regardless of how low the T4 and T3 go (T3 in partic controls your weight). You need to be titrated according to your FREE T3 and T4 and the TSH needs to be ignored. Block and replace is an effective treatment but only if you are monitored regularly - ideally every two or three weeks and your GP could do interim tests. Your blood test form needs to say you are on CBZ and have Graves to ensure you get the T3 result. IT currently it sounds like you are on too much block and not enough replace.

It gets tricky as often in Graves you can have elevated TPO antibodies (which you also get in Hashis) but if you also have TgAb then you have both Graves AND Hashis = Hashitoxicosis. In this scenario you are kind of hypO and hypER at the same time but you can have terrible inflammation in your thyroid which can drive 70% of your symptoms regardless of your blood results. Believe me, you will feel like utter crap!

50mg of CBZ is a very high dose - I had Graves, Hashis and Hashitoxicosis and I was only ever on 40mg at the worst of it (and if they'd checked my TgAb it would have alerted them to the fact I had thyroid cancer also!) and I went to hell and back with an endo only looking at my blood results and not listening when my T4 and T3 went off the bottom of the scale. I was like the walking dead but the inflammation meant I was having T3 spikes every four hours. I felt insane and they were starting to tell me I was insane as my bloods were 'normal'! Idiots! I had terrible pain in my neck, it was like a tree trunk and I basically got told to join weight watchers and take prozac (you can imagine my reply to all that!!!)

You need an endo who will listen to symptoms. Ideally you need to be under a good thyrotoxicity clinic and you could do with an uptake scan and an ultrasound. You can help manage the inflammation yourself - gluten free or Paleo Autoimmune diet, lemon balm tea, off sugar and processed foods, L-Carntine, Selenium no more than 400mcg. Also you need a full iron panel, vit D, all your electrolytes (esp Calcium at this stage), B12, folate, and a full blood count and a your liver enzymes. Graves makes you use up nutrients too fast, and you won't be absorbing properly. All these associated deficiencies can really add to your disease burden.

Don't be afraid to make a fuss, and demand a second opinion if you want one (do your research, find a good doctor). With Graves you also need your eyes checking.

Finally endos are keen to offer definitive treatments for Graves - full remission is unlikely in the long term - but provided once you are under control you have no toxic issues with CBZ there is no reason you can't stay on it for years. Some people take 2.5mg once a week to maintain their health. Life without a thyroid is VERY serious. Don't let yourself be rushed into definitive 'cures' (this is like saying cutting your head off is a 'cure' for a headache).

You need to educate yourself now, in bitesize chunks, as endocriniology in the UK is largely a joke .... I had a TT and I now self treat (I'm doing great but it's taken five years, I was Sooooo naive and too trusting) because I'm not getting the help and support I need from my doctors.

Take care, hang on in there,

Rebecca

xxxx

[greenginger in reply to Hidden]

All that you have suggested sounds great in theory but most endo units do not treat on anything but TSH and will not even test T4 or T3 on a regular basis.

I am in remission after 2 years of carbimazole. Never got a scan or uptake test or eye exam. Gps will not test for vitamin levels.

My endo appointments were months apart as were blood tests. No such thing as a toxicology clinic either.

Dietery advice is hard to come by and unsubstantiated. Plus you can make complaints and it will not improve the care unless you go private.

sorry but that is the truth of the matter.

[Hidden]

Hi there

I nearly died from poor treatment and misdiagnosis. I had Graves, Hashis, hashitoxicosis, TED and thyroid cancer. I was also deficient in nearly every vitamin and mineral, chronically anaemic, had parasite infections, massive gut problem, coeliac etc etc . I can assure you that such good doctors do exist and I have been under the care of a very good thyrotoxicity clinic in London - this was my third opinion as I would not take no for an answer. My GP did indeed test most of my vits and minerals and I've had uptake scans and ultrasounds. But only AFTER I educated myself and started putting my foot down about my care (ie turning up to appointments with academic papers). Endocrinology in the UK is LARGELY a joke but there are good doctors and clinics around. Any doctor not testing antibodies and dosing by the TSH in a Graves patient needs reporting to the GMC for medical incompetence.

My endo gave my GP clear dietary advice and told him what to test, even insisted I was referred for an iron infusion.

The point I am making is if you sit and wait for the NHS to come and rescue you, you are in for a long wait. NOBODY is coming to the rescue. I got off my backside and insisted on better care and I now receive world class care at a leading London teaching hospital. I fought tooth and nail to get it. And if I hadn't done that I'd be dead, my disease was particularly treacherous.

No such thing as 'can't' as my mother used to say ....

Rebecca

x

[Karen72]

Thanks so much everyone for the replies xx

[AshMcmo]

I put on 3 and a half stone once I started medication as an overactive thyroid causes an increased appetite and I struggled to rebalance my eating habits once I started getting better, so with my metabolism slowing down and me still eating the same amount I put on a lot of weight in the 6 month before my endo allowed me to exercise.

[carefulkate]

I also lost before diagnosis and have now with 2 years of remission put on 1 1/2 stones I agree that I would rather be overweight than ill but have now started to address the problem as I finally feel like me again and am slowly regaining control of my weight Each journey is different but I wish you much luck xxx