I have just been diagnosed with hyperthyroidism 4 days ago

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I am scared and anxious.  My symptoms: sweating, anxiety, not sleeping and unbelievably itchy skin I put down to menopause symptoms.   My doctor has put me on carbimazole and propanalol.  I went back for another blood test and my full blood count has come back as abnormal.  i feel I am left high and dry with all these horrible symptoms and have to wait for my referral to a consultant to go through.  No idea how long that is going to take!  I have been sitting up most nights unable to sleep and feel I am going mad with this itching.  Can anyone tell me how long they had to wait for consultant appointment.  How long before your symptoms started to get better?  Did you gain weight?  Really any advice would be welcome as this is all new to me

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    The carbimazole will start to work pretty quickly and you should start to feel a lot better within the next couple of weeks.  I've been on carbimazole for nearly a year and have no issues.  The consultant cannot really do much more than this anyway unless you want to look at other options like RAI or thyroidectomy but personally I'd stick with the tablets to see how you go.  Good luck x
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  • Posted

    Hi, I was exactly the same last year - awake all night, red blotches, uncontrollable itching, just terrible side effects, all my muscles had gone and walking up the stairs was so difficult, dreadful palpitations - just frightening, then my eyesight got blurred and I couldn't drive.   The really horrible side effects greatly improved after 6 weeks.  I took antihistamine of the shelf for itching and it really did help -  I was worried about all the medication, but consultant said it was fine. I think I also took small doses of nytol as I was desperate to sleep.  What have they said about your abnormal blood count?  I was lucky as I had private healthcare through work so was emailing the consultant non stop.  You just need to take the tablets and be patient.   Don't worry about the weight - I went grey and looked so old! My weight has not changed, still a little overweight! My GP told me I was very stupid to get Graves! It is not the best, but lots of people are fine and recover well - I am not doing great, but will get there,  I have 2 friends who are absolutely fine.   

    You will be fine. X

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    I have recently been diagnosed. I ended up in hospital with tachicardia , breathlessness, swollen ankles, tremors of the hands and itching like mad!  They done loads if tests including all blood work. In the week my gp rang to tell me my tsh was low with meant overactive. My b12 and folate were low too. I was referred to consultant and saw him at the end of April. It took 4 weeks from referral. Yesterday I had my iodine uptake scan and ultrasound and then a consultant told me it's graves. At the end of April I was put on carbimazole 30 mg a day but made me very ill. I'm now on propyliouracil 100mg a day. 
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  • Posted

    I was feeling like you. I've been on 20mg carbimazole since December 27th 2013. I've had the Meds upend to 30mg for one month then reduced back to 20mg. I have really bad itching so my skin feels like it's droning of. Flaking all the time. I can sympathise with you. My endo has just changed my Meds to 100 mg Propylthiouracil. I have to go to my gp Friday to get the prescription for this. I have thyroid eye as well. This is not a good illness to have. But on the plus side when the Meds start working you will star to feel better. Hope this happens for you soon. Good luck. X
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    • Posted

      I'm only on day two of propylithiouracil but feel much better. Right now my right eye is really dry but I get spells of tearing too. I've now got to wait to see endo and my next app is not for months. I've got a telephone app in a few weeks with the endocrine specialist nurse to check how I'm getting on with new meds. I'm hoping to start feeling better soon. I just want to feel normal!
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  • Posted

    Hi Ariadne

    Sorry to hear you are not feeling great.

    I think you will start to feel better when the Carbimazole starts to kick in, it does takes a few weeks for this to happen but once it does your anxiety, sweating, not sleeping should all improve. You may start to put on weight as the Carbimazole slows down your metabolism, it need not be a problem, just be a bit more concious of what you eat.

    From my own experience I believe it was Carbimazole that caused my itchy skin plus I had other problems with it too, I used to feel like I would faint at any moment, I couldn't focus on anything & felt foggy! On reflection I believe I was prescribed too high a dose to start with and it was too much for my body to cope with.  Given these issues I too was switched to PTU but unfortunately, this drug caused other side effects, swollen joints & heartburn were the main things but again I think the dose was too high initially.  

    All I would say is Graves is a complicated condition and in my experience the endos are pretty useless at explaining anything, none of them explained to me the real reason the thyroid becomes overactive, it is not because the thyroid is not functioning correctly it is as a result of your immune system not functioning correctly.  Endos are only interested in treatment of the thyroid, essesntially they treat the symptoms not the cause.

    My advice to anyone with this condition would be to research as much as you can about the condition and don't believe everything your consultant says.  There is an awful lot of info on the internet some good, some not so you have to research carefully.  I think it is important to try to understand yourself what is happening to your body then you are able to talk with some knowledge when you see your consultant and don't be afraid to question what might be recommended.

    Most endos will advise you there is no cure and you will only have 2 choices, have radioactive iodine to kill off half your thyroid or have it removed all together.  Don't get pushed into making any major decisions until you are ready.

    I am currently trying alternative ways to improve my health but this is by no means easy, its not for everyone and as yet I don't know if it will even work.  

    Let us know how you get on & I wish you well for the future.

    Ann

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    • Posted

      Hi Emma

      I just re-read your post, did your doctor really say you were stupid to get Graves, was he joking?? Believe me you would not want to get this condition through choice!!

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  • Posted

    thank you everyone for your informative and considerate answers. It means a lot
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    • Posted

      It's very complicated and have heard so many different things already. Feel like I have been left a bit high and dry and my gp does. They didn't really tell me anything and just left my gp to deal with the fall out whilst I was on carbimazole and she said the reason I referred you to a specialist is because that's what they are. She feels they should have been monitoring me at first and then back to her although she was hot on checking blood count etc. they never changed my meds until I rang the hospital and explained what's going on. Hope you have some better support. 
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    • Posted

      I totally understand where you are coming from lukeylou.  My doctor phoned me today and told me to up my dosage.  I didnt even get an appointment to see him.  I will wait patiently until my appointment comes, good luck with your treatment
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    • Posted

      I was started on 20 twice a day and 80 mg propananol, also Vitamin D.

      My results were TSH receptor antibody significantly elevated at 12.5IU/L (0-1.5), TSH <0.01, fT3 33, fT4 92, Vitamin D 61nmol/L.

      Ultrasound thyroid was a little enlarged with the right lobe measuring 49 x 15 x 17mm, left lobe 49 x 14.19mm.  It had mild nodularity and the Doppler showed diffuse increase in vascularity with no lymphadenopathy.

        

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