Hi all
Iv just been diagnosed with Graves’ disease, I feel this may be as a result of a stressful unexpected death of my husband last year,
Iv been commmeced on Carbimazole 20mg, I am afraid I will gain weight on this drug? Has anybody experienced little weight gain and not hugh like Iv been reading online ?
Thanks
Hello and welcome
I’m sorry you have had such a terrible loss of a loved one and now this diagnosis of Graves Disease.
I have a hyper nodule which is treated by carbimazole.
It’s usual to lose lots of weight before being diagnosed (although I didn’t) and once your levels stabilise you regain some weight. We are advised to be careful as we have become accustomed to a larger apatite.
My levels have been quite low lately but I have been able to lose a fair bit of weight. We all respond differently, you might find you have no weigh issues what so ever.
Graves should be confirmed with positive antibodies for Thyroid Stimulating Immunoglobulin (TSI) and TSH receptor antibodies (TRAb). There is also Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) for Hashimoto's (auto immune thyroiditis in UK) which ultimately causes hypothyroidism but can begin with transient hyperthyroidism.
Has you doctor done these test? GPs often refer to specialist who order antibody testing.
Do you have / or can get a copy of your results? you can request a print out. You need your results with ranges. TSH, FT4 and FT3 should all have been tested. Also important to test vitamin D, folate, ferritin and B12.
Hello Busyy and welcome to the forum ;
I too have Graves Disease, mine was triggered by being attacked by a work colleague.
I presume you have proved positive for the Graves TSI ( roughly translated as stimulating ) or TR ab ( roughing translated as blocking ) antibody through a blood test.
Graves is an autoimmune disease that ultimately attacks the thyroid.
The thyroid is a major gland and when it goes a bit haywire the symptom expressed can be confusing, odd, diverse and with some symptoms considered life threatening. This is because the thyroid is the engine of all your bodily functions and the controller of your physical, mental, emotional, and psychological well being, your inner central heating system and your metabolism.
The anti thyroid medication is to block any further thyroid hormone production whilst your own levels are too high and generally your own levels will fall back down into range and your symptoms reduce and you become more comfortable.
The NHS tend to give a 15/18 month window on AT drugs with the hope that this overactivity is contained and as your own levels come back on track the AT drug maybe adjusted down with a view to coming off the medication and to allow your thyroid production to come back on stream and continue as normal.
The NHS do not know how to control or reduce your antibodies and I read Graves is a stress and anxiety driven AI disease so this is something you need to work on yourself, and it does seem you have already identified your main trigger.
I knew nothing when I was diagnosed in 2003 and had RAI treatment in 2005 - a treatment I deeply regret - and only learnt of my situation a few years ago when I became very unwell.
You might like to look at the Elaine Moore Graves Disease foundation website as Elaine has the disease and researched the subject herself as she found little understanding in the mainstream of her continued symptoms after her treatment with RAI.
It is an AI disease that just so happens to attack the thyroid - the thyroid being the victim in all this and not the cause - as the cause being your immune system attacking your body.
Mainstream medical resolve the situation by removing the symptoms by removing the target of attack, your thyroid, but this is a major gland and living without a thyroid isn't much fun either.
I now manage lingering Graves, thyroid eye disease and hypothyroidism and am self medicating as I am unable to acquire through the relevant NHS channels the appropriate thyroid hormone replacement that I need to regain my health and quality of life.
Any weight gain seems to be down to thyroid levels stabilising rather than the medication. A lot of people regain what they lost, when you are very hyper you may go through a period where you either lose a lot of weight or can eat a lot without gaining weight. I also found that I was very thirsty and therefore preferred food with sauces etc, so probably more calorific. I was also physically exhausted and getting much less exercise.
The trick is to keep an eye on your appetite and weight, and make sure you adjust your intake as your thyroid levels come down. You may still regain some of the weight you lost initially.
Yes absolutely agree with other comments. I lost lots of weight before being diagnosed, my work uniform was hanging off me. I was always hungry as well. I have been on Carbimazole since March 2019. I have 2 nodules no autoimmune disease.
I have steadily put weight on over last few months and I would say I am back to where I was before losing. I went down to 8st 9llbs and am now 9st 7llbs
I try to exercise by walking more than I did before . I really don’t want to put on any more .
I’m sorry you are going through such a difficult time. Good wishes to you.
Hi. I too have graves for the last 6 years. My weight has fluctuated quite a lot from an average of 13 stone over the past 20 years. I have experienced weight shifts between 12 stone to 15.5 stone. I felt poorly at times during the first 2 years of treatment but finally balanced my tsh blood levels , felt better and was able to loose some weight. Currently just under 12 stone. The carbimazole slows your metabolic rate but improves your symptoms of graves. The trick is finding a balance that keeps your tsh at about 1. You need to adjust your dose via titration as I have never found a single dose that keeps me in the same place. I sea saw. regular blood tests will help with this at least quarterly 4 times a year. Good luck.
Hi, really sorry to hear I’d your husband’s death, I agree your Graves could be linked to that. Mine started after I had had a bit of a shock.
I wouldn’t have said I put on weight but I had lost such a lot of weight by the time I was diagnosed and although I felt so ill I actually looked really well without the weight.
I had read in Dr Tofts little book Understanding your Thyroid that I would regain the weight I had lost and I thought ‘no way’ but yes I did.
I don’t think it’s the carbimazole (40mg a day) or even the levo (finished off at 100mg a day) I took along with it (I was treated with block and replace) I think it’s just what happens when your thyroid goes back to normal.
Hi. I’m the same as you. I would ask politely how much are you eating?
Hey there - just to add ;
I deliberately didn't answer your question regarding your weight, as I believe at this point in time you have very little, if any, control over your metabolism and think it better to just ride out this phase with as little extra stress as possible.
Your body is exhausted, it feels like you have just run a marathon while sitting on the sofa, and your brain 's suggesting you get up and go and do some exercise. You are wired, and tired, and possibly with insomnia, and dry gritty eyes, and you maybe eating for England but loosing weight, or maybe not, you also maybe anxious, nervous and with a thumping heart and scared of your own shadow.
There is a very good chance your metabolism is running so fast that you are unable to extract any nutrients from your food and your core strength, your ferritin, folate, B12 and vitamin D do need to be maintained at optimal levels to support you through all this. You may well be eating healthily, but the hyperactivity isn't giving your gut enough time to digest anything properly.
It is a bit like being on a seesaw and currently your T3 and T4 thyroid hormone levels are too high and you are stuck up in the air - and your TSH is very low and sitting on the other seat and stuck in the mud.
The AT drug is sitting between the two seats and the skill is to find a level of blocking the hormones that balances your levels as they come back down.
Too much AT drug and you risk symptoms of hypothyroidism - too little and your hyper symptoms may return. It's a fine balance and can take much time, skill and monitoring by an experienced endocrinologist.
Be kind to yourself, try and relax though I know it's futile and fully understand if your brain feels scrambled.
.. A Grand explanation !
.....to simplify what is going on with Graves and how it makes us feel
Easy to identify ourselves from that description
Mx🌹
Yep. I lost about 20 pounds this last time with Graves (I've had it for the last 12 years or so, refuse to let them kill it or take it out). I've taken PTU in the past but it made my hair fall out so I switched to methimazole this time. I'd say I've put about 30 pounds back on. I lost a lot of muscle mass and that's pretty much what I've put back on. I agree with everyone else. It's not the pill, it's just the body rebuilding itself.
Sorry to hear that, similar happened to me years ago, you will probably gain weight rapidly at first on Carbimozole, as your body is no longer on overdrive and burning calories at a mad rate, be careful what you eat and it should level out.
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