Hyperthyroidism returned

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Hi in 04 I was treated for graves disease with Carbimazole and then levothyroxine. Which had worked until recently. I had a annual review in June and was told my thyroid was over active and to have a repeat test in 2 months which is showing it is still over. Can graves disease return? I don't know what the numbers of my T4 and T3 are the dr never said and I didn't know you could ask. I'm waiting to see a specialist but the Dr has started me on 10mg of carbimazole while I wait. I have been very ill over the years and have been in icu 3 times to cut a long story short and to not bore you with all the details I have memory loss and really can't remember exactly how the treatment works and symptoms ect. My worry is that I'm now only left with 55cm of bowel so no one knows how much of any medication I absorb. Is there any other way of taking carbimazole than in tablet form? I receive all of my nutrition through artificial feed which is supposed to maintain my weight but I'm still loosing so I guess that's my thyroid. Recently cramps have been unbearable I'm not sure if that is because I'm dehydrated or if that could be related to a overactive thyroid too.

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  • Posted

    Hi deborah27322, sorry you are not doing well. On average only one-third of Graves disease patients stay in remission long term. I am not aware of a liquid formulation of Carbimazole (except in veterinary medicine). 

    This paragraph is from the Carbimazole datasheet: "About 90-100% of Carbimazole is rapidly absorbed in the intestines within 15-30 minutes and is rapidly metabolised to its active metabolite methimazole that can be only identified in the blood. The mean peak plasma concentration of methimazole is reported to occur one hour after a single dose of carbimazole."

    I am not sure if you are referring to muscle cramps or abdominal cramps. Muscle cramps can occur in hyperthyroid patients due to a disbalance of minerals (e.g. Calcium, Magnesium, Sodium, Potassium) and/or due to muscle wasting (protein catabolism). I can only imagine that problems with intestinal malabsorption make the situation worse. 

    Maybe your doctors could monitor your thyroid levels more frequently and adjust your Carbimazole dose to account for any unabsorbed portion of the drug. 

       

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    • Posted

      Hi Dan

      Thank you for your reply. That is very interesting about carbimazole and how quickly it is absorbed, l must be looking in the wrong places because I haven't seen that where I've read. The cramps I get are muscle cramps and in my bones also bending them in unnatural positions to the point where they feel they are going to snap. I think I will ask the nutrition team to up my daily fluid intake to rule out dehydration. I get my bloods done every week by the nutrition team and I haven't had any comeback that they are showing that I'm dehydrated. I could also ask them to add the T3 and T4 on regular so I'm not having to have my bloods done any extra I already have autoimmune hemolytic anemia.

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    • Posted

      Hi Deborah,

      As you mentioned: "... in my bones also bending them in unnatural positions to the point where they feel they are going to snap... ", I wonder what could be a sign (symptom) of RA inflammation (autoimmunity) developing. Did you check that with your doctor?  Also, when you add thyroid test at the same time other tests are done, the amount of blood draw will increase. So don't get surprised then.

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    • Posted

      Hi Mike

      Thank you for your reply I try to talk to Drs and specialists about my symptoms but I feel they don't listen because of my complex history. I need surgery which no one will even consider doing. They don't even read my notes I think because there is so many of them. I moved town 3 years ago to be nearer family for support ( I feel a big mistake ) my old doctor's had finally put me on a care plan after many unplanned emergency hospital admissions, my new gp haven't. I'm not sure how much fight I have left I feel not worthy, It just seams one thing after another and another and I'm not sure how much more I can take.

      Sorry for such a negative post just really struggling right now

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    • Posted

      Oh Deborah, Don't feel sorry for your post. We all need this space to find some light/hope/comfort for our misery.

      I can understand your current situation of fighting and struggle for (seemingly) so many illnesses upon you. Must feel desperate for a long time.  But never be discouraged and give up. Your experience with doctors' indifference to symptoms is of no difference from mine or probably many other members here. I myself had a rather short history of GD infliction with all subtle but definite symptoms, yet no doctor had paid attention to my complaints/sufferings... they only look at your thyroid numbers (sometimes even only TSH and ignore T3 T4) and send you away with more ATM prescription. First I got mad, then I was upset and sad, now I ignore them like they ignore me, but concentrate on my own research and finding alternate ways of treating myself (e.g., diet, stress management, supplements, herbs, etc.) Surprisingly, there is much improvement achieved through these non-standard medical treatments. Although all of this can cost greatly in personal effort, time, patience, and finance, I still recommend everyone with like disorder at least try as you can. I hope and wish you find some positiveness in lessening your pains and improving your condition. 

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