Carbimazole 10mg stopped 4/5 weeks ago and feel awful!

Posted , 6 users are following.

Hi just looking for some advice.

I am 27 year old female and was diagnosed with overactive thyroid over 18 months ago now. Initially they thought it was nothing as my TSH levels have always been a normal level with my T4 being slightly over however, I suffered all side effects over active thyroid anxiety, nervousness, sweating weight loss!

After extensive testing over the months a small tumour was found in my pitruity gland which they initially thought was secreting TSH however, it wasn't and now they believe it was just an incidental finding. After more and more and more testing they now believe I have Thyroid resistance/Graves disease (still unsure)!

Anyway I need help as 4 weeks ago the consultant stopped my Carbimazole at 10mg (started on 20mg, then 15mg, then 10mg) as my thyroid levels have been normal for a good few months now! However, I feel absolutely TERRIBLE!! Anxiety through the roof, depression, mood swings, crying, restlessness, unable to sleep, bowel changes and weird head sensations (kind of like a zapping feeling?) Is this normal??? What should I do I feel awful! Any advice would be greatly appreciated....many thanks xx

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8 Replies

  • Posted

    Sorry may I add that both my t4 and t3 were over with my TSH being normal range thanks
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  • Posted

    Good afternoon Charlotte I suggest  requesting a second medical opinion

    I suggest  bold work every three months if possible

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  • Posted

    I agree, you need another oponion. It seems that your endocrinologist is not treating you correctly re the medication.

    I have already discussed my treatment in another thread here (Vizz) if you can find it, but I'm happy to do so again.

    I was under the care of a professor of endocrinology at King's hospital in London.

    He treated me with a high dose of carbimazole (40mg per day) for 6 months, and then stopped. Like a shock treatment. This eradicated all symptoms and put me in a state of euthyroid within 6 weeks.

    At the end of the 6 month period I was in remission. I was 100% back to normal! I stayed this way for 4 years and then relapsed.

    I was treated again in the same way and went into remission again after the 6 months of medication. I have been healthy now for almost 3 years.

    My endocrinologist says that I can do this treatment periodically for the rest of my life without negative effects.

    The last 4 and half months of the treatment I also took 100mcg of thyroxine. It's called block and replace.

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  • Posted

    To give you some relief from your symptoms in the meantime, I suggest beta blockers. I took 20mg twice a day and it did a good job re the anxiety, rapid heartbeat, etc. GP can prescribe.

    But you must tell your endo that you want to do the 6 month B & R treatment at 40mg carbimazole per day, no less. Otherwise find another endocrinologist.

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    • Posted

      Thanks for you reply.

      I'm at the clinic now having some bloods done to check my levels. Once this is done I am going to contact my endo and speak with him. I felt great when on the medication the best I've felt in years, and now, i feel absolutely awful on the verge of having a panic attack. I just want to feel normal again x

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  • Posted

    Hi charlotte50751, it is a difficult situation since your doctors don't seem to be certain regarding your diagnosis.

    Graves' disease patients disease normally present with elevated thyroid hormone level but with a suppressed TSH level. The fact that your TSH level was not suppressed while your FT4 and FT3 levels were high indicates that the thyroid hormone control mechanism is not working. That is why your doctors investigated your pituitary gland in the first place. 

    It is also strange that you still have all the symptoms even though you are euthyroid. The endocrine and nervous systems are tightly coupled and a disbalance might cause your symptoms even it does not involve the thyroid alone. Would be good to have a second opinion. If I were you, I would make sure to get a printout of all your blood tests and medical reports. 

    I would also suggest you keep a diary of your symptoms including heart rate and blood pressure and time of day. Many processes involving the endocrine system follow a daily rhythm (circadian cycle). For example, in healthy patients, the TSH level peaks a 3 am and has a low at 3 pm. An accurate account of your symptoms might help identify a pattern. 

    Btw, block and replace worked for tlvr but it has fallen out of favour with many endocrinologists. The reason for this is that it requires high doses of antithyroid medication for a prolonged period of time. These drugs are more likely to have serious side effects at higher doses. For example, 10% of patients experience drug rash at doses above 30 mg of Carbimazole per day (myself included) not to mention nausea and joint pain.  

     

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    • Posted

      How do you know that the B&R treatment has fallen out of favour?

      The 6 month course of B&R may not suit everyone, but it obviously works for enough people for it to be prescribed by the endocrinology team at London's Kings College hospital.

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    • Posted

      Hi tlvr, on second reading 'fallen out favour' sound a bit too negative. I am convinced you are being treated by an experienced endocrinologist. Each treatment method has its benefits and your doctor recommended B&R based on your medical history and on the fact that you responded well to B&R in the past.

      As a patient, it is easy to jump from 'This has worked for me.' to 'you must tell your endo that you want to do the 6 months B & R treatment at 40mg carbimazole per day, no less'. All I wanted to do is shift the focus of this exchange from one specific Graves' patient to a large group of patients.

      There are at least a dozen clinical studies aimed at comparing B&R (block and replace) with the titration method (where the dose of anti-thyroid medication is reduced after the patients' thyroid hormone levels have normalised.) They found that B&R offers no advantage in terms of treatment outcome or relapse rate. B&R had a higher treatment withdrawal rate due to side effects. The studies also showed that treatment with higher doses of anti-thyroid medication leads to an increased incidence rate of severe side effects like agranulocytosis and hepatotoxicity. Current guidelines for the treatment of Graves' disease 'do not routinely recommend a block and replace regimen, but this can be considered in certain patient groups (poor attenders, eye disease, those non-tolerant of hypothyroidism).'

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