I`ve gone hyper to hypo

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Hi, I was diagnosed with Graves 2 months ago and was put on 40mg carbimazole.  I had an appointment with the endo 3 weeks ago and she dropped the dosage to 20 mg as I`d reached the normal range. I had been feeling much more my old self but I felt I was beginning to feel poorly again, the endo said that I`d been very ill and my body was bound to take some time to get completely right again. However my feeling poorly has got worse and worse until today I really don`t know how to cope with this anymore. I spoke to my GP last week and he sent me for a blood test that came back to show I `d gone underactive. He said to carry on with the 20 mg of carbimazole and go for another blood test this week - as he wants to see if my levels are righting themselves. All during this I`m feeling more and more ill and getting more depressed and wonder if any of you have any suggestions as to what to do? The endo doctor said her intention was to get me off the carbimazole and she`d see me in 3 months time but there`s no way I can wait that long feeling like this. My latest blood results should be back tomorrow and hopefully my GP will drop the dose of carbimazole but I don`t think he `s keen to go against the endocrinologist`s suggestion of waiting 3 months.  I`m tempted to phone the endo`s secretary and ask advice but no sure if that`s ok to do that?  Any advise would be so appreciated- thanks

Joy 

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  • Posted

    Hi Joy

    I would suggest you write to your endo and enclose the blood test results. I had a similar problem and although I never actually saw the endo she did reduce the amount of carbimazole and organised 4 weekly blood tests until the time my next appointment was due, which like you was 3 months away.

    Good luck

    Glennis

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    • Posted

      Thank you Glennis but since I wrote on here earlier, I took the bull by the horns and phoned the endo`s secretary. I am so glad I did, she was a lovely woman and said that  patients can always phone if they`ve got concerns. She found my latest blood tests on the `system` and is printing them out to show the endo this afternoon- asked me for my latest symptoms and said she`ll ring me back after she`s spoken to the endo. I never knew we could ring the secretary like this - I wish I`d done it a week ago.

      Joy

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    • Posted

      Hi Joy. I'm glad you have it sorted. I advised writing as the secretary of my endo never answered the phone or replied to any of my voice mails, hence I took the old fashioned option to write directly to the consultant.

      Good luck with everything.

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  • Posted

    Hi. Joy 

    Sorry to hear you have been feeling so unwell. I am curious as to what are your symptoms ? 

    I have been diagnosed with over active..( it is miserable)... I have severe weight loss, rapid heart rate, fatigue , muscle weakness and atrophy, dizziness, and occasionally brain fog. I just started Tapzole 5 mg yesterday ... My doctor is being real cautious ... I also started taking the L- Cartines and Aecytl Cartines ... Vitamin D ... And eating a healthy diet. I am from Canada and even here you have to keep reminding the doctors of the symptoms ... I hope you get your medication straightened out .. And Yes... Keep searching for help and ways to help your body get healthier... 

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    • Posted

      Hello Audrey

      You have my utmost sympathy with being overactive, I was like that for quite some time until I eventually went to my GP who arranged blood tests. I was put on Carbimazole 40 mg a day - which sounds like your Tapzole but perhaps the uk version? When my appointment for the endocrine consultant came she said I`d gone down to normal levels - which was 6 weeks after being extremely overactive. I did feel better although not 100%, I understand it takes a while to get back to feeling really well again. She dropped my Carbimazole to 20 mg per day but day after day I`ve felt more poorly. Last week I went for more bloods and my GP says I`ve gone underactive - my symptoms are tiredness, headaches, joints and muscle aches, dizziness, night sweating and sore ears and throat. I`m waiting to hear back from my endocrine`s secretary this afternoon- hoping upon hope that she can suggest something - perhaps lower the Carbimazole?  Hope this helps with what you asked and that you feel better soon 

      Joy

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    • Posted

      Thanks. For replying so quick. Yes my GP wants to test me every 3 weeks to prevent me from going hypo. This is new to me too... I haven't been able to work to weak and dizzy that comes and goes ...I hope you get in balance soon too! Keep us updated....

      Audrey

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  • Posted

    I ring my Endo's secretary at the drop of a hat, and they are always brilliant at getting straight back to me, and in their clinic. I too have just had this happen to me, swung the other way. I've an allergic reaction to Carbimazole and they've today put me on Propylthiouracil. I rang the endo clinic last night, out of hours, and left a message. She was on the phone to me at 9am today and I was in clinic for 12.30. I'd ring up and don't think you're being a nuisance, you're not.
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    • Posted

      Thanks Halloween, the endo`s secretary didn`t get back to me yesterday as I imagine she was very busy, I`m hoping to hear from her this morning or if not I`ll ring her again. It does help a great deal if we`ve got someone to call if needed.

      Joy 

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  • Posted

    Hello everyone again, my endo`s secretary got back to me today with a message to lower my carbimazole to 10 mg per day. She said I was slightly out of range with TSH 5.

    Hello again, my endo`s secretary got back to me today and said to lower the carbimazole to 20 mg a day as my range was slightly out TSH 5.64.  Would this have made me feel so poorly this last week as I`m thinking I may have a cold that`s developed today with a headache, limbs ache etc.  Or perhaps a mixture of the lower TSH and a cold?  Oh the trials of getting our levels right!  Also I got to wondering if our immune system is attacking our thyroids and we get our thyroid fixed in whatever way we individually choose- then what will the immune sytem attack instead?   Thanks in advance 

    Joy 

     

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