I was diagnosed with graves and overactive thyroid about 5 years ago. I had been treating it on and off, but mainly off because I’d heard so many stories of people gaining weight on carbimazole. I have body dysmorphia and weight gain would be highly detrimental to my mental health.
I told my GP I’d like to start treatment again 7 weeks ago, because my symptoms were so bad and I felt like I was (and probably actually was) on the brink of death. Instead of starting me on carbimazole straight away, he delayed this for a week while we got a blood test done. He then put me on 40mg a day.
I then had to wait 6 weeks for a hospital appointment, where the “specialist” (I actually saw a haematologist for some unknown reason, not the thyroid specialist named on my letter) told me my blood test results were missing, so just keep taking the same dose and we’ll see what happens. Is it just me or is that completely ridiculous and outrageous?! I feel like no one is taking this seriously at all, they’re just wasting my time and guessing dosages like it’s some sort of game. I’ve now been taking 40mg carbimazole daily for about 7 weeks, no one has any clue what my levels are like (they didn’t even give me a copy of the initial blood test results) and I’m already gaining weight despite exercising more and lowering my calories from a 3000 (I had a crazy appetite) to 1700. I’m absolutely terrified of the weight gain and extremely likely possibility of going underactive, since I’m being “treated” by complete idiots. Does anyone have any advice? This whole thing is driving me insane. I see no other solution than to stop taking the tablets.
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HyperBee01
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Well, it would be a start of taking control. Check out how much it would cost before deciding. You say you see 'no solution than to stop taking the tablets' but you would be doing the same thing that you disagree with in the medics as you will be making decisions without the necessary information and evidence.
go back to your gp, ask for blood tests to be done again, I wouldn't stop taking tablets , until you've had results back. Im not medical trained, just have thyroid problems, I take the advice from people on this site, they know more than my endo!
It is important to have copies of ALL your results to check what has been tested. There have been cases here where members have been wrongly diagnosed. So which anti-bodies were tested ?
So much help on your post of one month ago - maybe worth re-visiting the replies - including mine 😊
They don’t even have them themselves, let alone giving me them! But I don’t think I’ve been wrongly diagnosed because I’ve been treating it on and off for years and I’ve always been hyperactive with Graves
There are copies of your results somewhere - and as you think the NHS sucks I thought it best you checked things out in case they have made a mistake. Being on treatment on and off for years does not negate an error .... only saying !
I’ll have to see my GP again and find out. I’ve been avoiding it because he’s completely useless (and not only with this issue, others too) and it drives me insane. The only reason I haven’t changed GP yet is because I’m waiting for him to write me a letter, which has taken him 2 months and counting! Maybe I’ll get it by New Years! So is it possible to have graves and hyper, leave it untreated, and then randomly become hypo? I still have all the hyper symptoms, palpitations shakiness etc
Without seeing which anti-bodies were tested from the beginning it is impossible for me to comment. The symptoms of both Hypo and Hyper can overlap - you can check this out on the main website of this Forum - see below.
Go to Gp n demand immediate blood tests. Insist they also include free t3, the doctor can write in on manually if there's no computer system option. Go to Elaine Moore's website n read everything you can. Once you have those results, u have evidence to argue your case. Yes they are mostly idiots. You have be your own advocate with graves disease. Also check out apitope for a bit of hope for d future!!
Thanks, I will look into everything you mentioned. Thyroid problems are such a curse, at least with other diseases the doctors aren’t as incompetent with the treatment!
Have you heard of l-carnitine - it's an amino acid that can (a) help with weight loss and (b) help with hyperthyroidism?
It's as yet untested for hypothyroidism (my area of concern), but, it has been used in clinical trials to treat hyperthyroidism symptoms. Dr Myhill (CFS/Fibro expert) believes carnitine acts as kind of flow regulator for cellular uptake of fats and hormones.
It's available off prescription as a supplement in powdered form so you can have as little as you want to start to see if it's ok.
I totally agree with Marz though, that you do need positive proof (antibodies) that it's Graves disease and not a Hashimoto's flare-up which could turn a corner and leave you very hypo (especially on carbimazole).
The carnitine should, however, help if it's Graves. Blood results are a must.
I know how you feel I was diagnosed Graves' disease 2008 and poorly treated ! NHS thyroid specialist ignorant they don't care about thyroid patients no caring no information no explanation nothing they never ask you how you feel ?
At least now I know it’s not all in my head! I can’t believe how useless the doctors are. Even simple things like blood tests aren’t done properly. At my hospital appointment the alleged “thyroid consultant”, who wasn’t one at all, took it upon himself to decide that I will need radioactive treatment. Without even asking for my opinion or input, and without even seeing any test results. I will never do RAI or surgery despite what they decide on my behalf. It’s meds or nothing for me. How are you doing now?
Not just the NHS. I think most free or subsidised healthcare is the same around the world. These systems are overloaded and doctors overworked. Which works out to our getting rotten inadequate care. When was the last time you saw a doctor who not just looked at your blood tests results but also gave u advice on how to manage your condition so u can live better till the next appt?? That never happened even once for me! It's wonderful boards like these that do the other important half of the doc's job
If u have graves what are your symptoms? I have been sick with hyper/graves for 21 years. Not fun being so sick. My endo told me that you have to be born with the gene for graves disease and thyroid is the engine to your body. What ever you do please dont go off your meds that does more harm than good. We have bad doctors in the us to u just have to search for the good ones. I will keep you in my prayers.
My graves is in a stable patch. Keeping the weight on. Amazing. Daily working on keeping a lid on the stress. However, my intestines are acting up, so overall not so great : (
My bp keeps going up. Stress i believe. Some much going on in my life. My doctor just uped my meds again. Seems every year this happens to me. One good thing menopause put my hyper/graves into remission. I pray for you!!
I have used salt in over 10 years. I can have sodium if it 140 and under but thats hard as sodium is in everything in the grocery store. I have an internal medicine doctor and he is a good doctor. He ran my labs 3 times and labs for thyroid and graves came back normal and he told me that sometimes menopause can put graves in remission. I was in full blown menopause and i have no symptomes of hyper/ graves disease. Every woman is different in menopause and alot of it is based on how your mom was in menopause.
That's so true about sodium. It's the hidden salt.
I really envy u your great doc : ) I had a great GP as well, till the stresses in the system swallowed him up. Imagine u wait 6 months for your follow up appointment and the doc is having an off day and cannot focus on the consultation and cannot remember even the basics of your case. What a let down. I feel sorry for him and myself : (
Are u still on hyperthyroid medication?
My mom went through menopause normally so I guess that says something. My hyperthyroid is from my dad.
Sometimes our medical system is not the best either. No i dont take no thyroid meds at all. But iam not healthy with my bp and ihave another medical issue to. Iam sick and tired of being sick and tired!
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