I have just been diagnosed with hyperthyroidism and am on 40mg of carbimazole. I have lost about 10 pounds with being hyperthyroid. I have read and read about this and have scared myself...I am terrified about putting on weight, I am not small to begin with and it is a struggle for me at the best of times. I exercise every day whether that be hiking, circuits, treadmill etc I have changed to gluten free and am weaning myself off dairy (the odd time I eat outside of these). I have read people putting on 2 stone +, I really can't cope with that...is this because they're over medicated? Has anyone found this has happened to them?
How long should the carbimazole take to kick in, I'm on it 2 weeks and have another appointment with endo in 2 weeks, he told me to weigh myself and measure my waist before I started and right before I meet him again, this tells me weight gain is very possible!
Anyone had any luck going into remission? What did you do? The thought of never eating Chinese food again is tough (:
Sorry for the long post,
Thank you all.
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1982lol
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Please add actual results and ranges from before starting on Carbimazole
Especially important that GP has tested relevant thyroid antibodies to confirm Graves’ disease
TSI or Trab antibodies test
Hashimoto’s (autoimmune thyroid disease causing hypothyroid) frequently starts with transient hyperthyroid results and symptoms and can be misdiagnosed as Graves disease (autoimmune hyperthyroid) unless correct antibodies are tested
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested Hashimoto’s . Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, with either
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Can be slightly raised with Graves’ disease
Hi, thank you. I am in Ireland so a lot of that doesn't apply but thank you. I am awaiting results on a lot of what you mentioned, the only thing I have at the moment is T4 Free which was 48....I am new to all of this so find the numbers very confusing...
As weight loss is common when hyper for most (not me) regaining it once on carbimazole and your levels become stable is also very common. We are advised to be careful as we have become accustomed to larger apatite. At this time you won’t have have much control over metabolism and appetite so focus on adding nutritious foods.
40mg carbimazole is a higher dose although some do start higher. Regular re-testing is important when staring new to see how you respond. Remaining too high or falling below range must be prevented. You should be reviewed by FT4 & 3 not by TSH alone. You might like to discuss and agree with your endo how often you are monitored in the future, 6 weekly seems to be standard.
For many, Graves does go into remission if given the right level and length of treatment. On this forum I’ve learnt that there is a tendency for patients to be guided into having permanent treatment (radioactive iodine or surgery) early on. Do you research first and do not be rushed into any decision. Most do have good outcomes & but some regret the approach taken.
Report to your endocrinologist If you begin to have any eye issues, as thyroid eye disease can be a complication. You will need to have a referral to a specialist.
1982lol, please don’t worry, from what I have learned hyper is much better then hypo. You are hyper. I am hyper with Graves’ disease. I found that you need to watch how your T4 levels are. The range for me was between 12 to 22 on my blood test. I found 18 perfect. I watched this by having a private blood test about £28. If your Endo doesn’t watch you closely you may swing quickly Towards hypo , it’s the dose of carbimazole that dictates this. I was on 60 mg then 40 and then 20, I am now on 5mg per day and have had wonderful advice on this forum about going towards hypo so I’m nearly ready to reduce further. If you are offered thyroid removal or semi removal of the gland take great care and consider very carefully about the consequences. Read everyone’s experiences when they have taken this step.
I would only consider this for cancer related problems. If you have Graves eye disease, removal of the thyroid can make it worse. But all in all I can only tell you of my experiences. Good luck Valerie
Thank you so much Valerie, it is refreshing to hear such a positive attitude towards this! I think I scared myself by googling and reading too many forums, I find some to be very dramatic. I found a really good book by Amy Myers MD called The Thyroid Connection and it has really helped, I am changing my diet and lifestyle so I can be the healthiest version of me. It is possible, we will beat this!
Carbimazole reduces production of new thyroid hormones, but doesn’t destroy existing stores in the body. This means it may take 6-8 weeks before your thyroid levels are within range, and you really begin to feel better.
I don’t know whether you’ll be able to maintain your current level of activity over the next couple of months, although hopefully you will be able to get back to it in time. Symptoms of Graves’ can include breathlessness and problems with some of the larger muscles...I remember the day I discovered that having got down on the floor to sort out power for a projector etc at a meeting, I was going to struggle to get up under my own steam. Your metabolism will also be in overdrive, which can make you feel very tired...it’s quite odd, you may have brief periods of feeling mentally very bright and physically capable, but then crash like the Duracell bunny.
Most people seem to regain the weight they lost prior to treatment. To avoid gaining more, you will need to keep an eye on your diet as your thyroid levels come down. Bear in mind that while you are hyper, you may need more calories than usual, so just focus on eating as healthily as you can. If you end up with your thyroid levels dipping below the reference range, your metabolism will be running a bit slower than normal, so it’s possible you might gain a bit of wait, or find it harder to lose. However, as you should be having regular tests, this shouldn’t really be a problem. Ideally, your thyroid levels should remain within range, but it’s hard to get the dosing exactly right, and right now, the focus will be on getting your thyroid levels under control to give you the best chance of achieving remission
This is a long haul- you can expect to be on carbimazole for 12-18 months.
The chances of remission are around 40-50%, although this isn’t always permanent.
Yes, thank you, I'm expecting to be on it for 18 months. Definitely a life long thing, I would hope to normalise my levels with diet, lifestyle and medicine. I'm feeling good so far, my symptoms have always been mild so I need to watch my levels. I'll be paying for regular blood tests myself.
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