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GRAVES DISEASE

Posted , 14 users are following.

susan62065
susan62065

Hello all, my daughter is 21 and has today been diagnosed with Graves, she has been having lots of symptoms ie racing pulse, dramatic weight loss, severe itching, anxiety etc, her thyroid levels are through the roof apparently and she has been prescribed 40mg of Carbimazole and 80mg of propananol daily, i am so worried about her !! how did the Carbimazole affect you because reading the leaflet enclosed with the package is really unnerving 

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  • christine57219
    christine57219 susan62065

    Posted

    Hi Susan,  I was diagnosed with Graves disease 3 yeas ago and have been on Carbimazole and Levo Thyroxine since then but to begin with from diagnosis until I my appointment came through to see a specialist about 3 months later, I was only given Carbimazole to take and it was 40 mgs a day.  It will calm downsome of the symptoms like racing heartbeat/pulse and anxiety but it takes a little while to kick-in.  When I was first prescribed this medication 3 years ago, the GP told me that if I got a sore throat or any other infection it was important to make an appointment at the GP's to have bloods tested to make sure that the white blood cells were not being affected by taking Carbimazole other than that I don't think there is anything to worry about.  I have heard that some patients taking Carbimazole start itching - but as your daughter already itches (like I did) then there shouldn't be a problem.  It really does help with those frightening symptoms of racing heartbeat/pulse.  

    I wish your daughter well and I know this will be extremely difficult for her but tell her to try not to get too stressed about it all - easier said than done I KNOW - but stress plays a big part in triggering Graves and its symptoms of which there are many.

    Christine

    • karen30256
      karen30256 christine57219

      Posted

      Hi

      This is for everyone but in response to the issues raised by Christine and carbimazole.

      Does anyone know what is likely to be the outcome if the blood count did fall due to carbimazole?

      For example - would the drug have to be immediately discontinued?

      If so what would it be replaced with?

      Is a fall in the blood count serious? Is it a sign of infection?

      Is it safe to prescribe/take carbimazole if one has a cardiac arrhythmia?

      Thanks for your assistance.

       

    • christine57219
      christine57219 karen30256

      Posted

      Hi Karen

      Unfortunately I can't answer all of the questions but hope this helps.

      I believe that there is another drug that can be used to replace Carbimazole, it is also used to replace Carb when a patient has an allergic reaction to it.  I can't remember the name, it will come to me eventually wink

      From what I've read and can remember should Carbimazole begin to have an affect on the white blood cells it is indeed stopped and the white blood count goes back to normal levels after a few weeks unless it has already gone too low and that would only happen if it wasn't checked as regularly as it should be. 

      The ony other thing I can add is that in an article written by a top Endo, he states "there is no reason why carbimazole shouldn't be used for many years in those who do relapse.  Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the course".

       

    • lucy51252
      lucy51252 karen30256

      Posted

      Hi there

      I was very interested innyour case . May I have your e mail address?

       

  • linda187
    linda187 susan62065

    Posted

    It sounds as though your daughter is having a "thyroid storm" which is very serious and can be life-threatening.  In my opinion, she should be in hospital and monitored very closely.  If she is not in hospital, take her to the closest hospital Emergency Department. 

    What helped my disease was the addition of 3,000 mg of Regular L-Carnitine to my treatment.  I did this after reading a research paper by an Italian endocrinologist that stated that hyperthyroid patients benefitted from this and thyroid storms were less severe if they took it.  However, that said, I really think she should be in hospital.

    • karen30256
      karen30256 linda187

      Posted

      Hi Linda

      Can Regular L Carnitine be measured in the body?

      Is it possible to buy it from a Health shop etc?

      Should one tell one's dr if one takes it?

      Thanks for your help.

       

    • linda187
      linda187 karen30256

      Posted

      Regular L-Carnitine can indeed be purchased from a Health Food Shop.  Carnitine is an amino acid that is normally produced in the body but it gets lost from the muscles through urination when patients are hyperactive.  I got mine tested before I started taking the supplement.  The tests are for Free Carnitine and Total carnitine and I was deficient as are most hyperthyroid patients.  Hyperthyroid patients are also deficient in vitamin D and I tested deficient in that also.  So supplementing with vitamin D3 also helps.  I was not deficient in but I was low on Magnesium and added that one too.  I would advise you to do an Internet search on the topics of Carnitine and hyperthyroidism.  I added it to my treatment regimen after seeing a research paper done by an Italian endocrinologist on this subject.  You can definitely tell your doctor about it because he won't know about it, I guarantee it.  Doctors are not trained that way unfortunately.  But if you want his approval to take this, you are not likely to get it because he doesn't know about it and most docs are not open to learning.  For myself, I told my Endo when I took Acetyl-L-Carnitine because it had a dramatic effect on my TSH level and he was stunned.
    • karen30256
      karen30256 linda187

      Posted

      Linda 

      I am having ?panic attacks which are worsening over the last two days. DId anthing like this ever happen to you? If it did did the L Carnitine help? 

    • linda187
      linda187 karen30256

      Posted

      Anxiety and panic attacks are common in people with hyperthyroidism.  Usually beta blockers like Propranolol help with palpitations which also go along with anxiety.  I only had panic attacks when I wasn't hyperthyroid and what helped me was the antidepressant Imipramine, brand name Tofranil.  Stopped them very quickly.
  • susan62065
    susan62065

    Posted

    Thank you all for your replies wow this forum is fantastic !! i want to know everything and then i can support her the best way possible, she saw the endo today and he talked her through a lot but as you know when your in an appt not everything sinks in, i have never heard of a Thyroid storm it sounds very scary !
  • christine57219
    christine57219 susan62065

    Posted

    Hi again Susan, if your daughter has been with the Endo today then he would know if she was going through a Thyroid storm so I wouldn't think that she is.  Many of us had levels that were "through the roof" when we were diagnosed.  The most important factor is to make sure you have doctors and endos who are sympathetc and listen to how your daughter is feeling regardless of the results of blood tests because in so many cases what they class as within normal range does not suit everyones wellbeing, we are all different.  It's also important and a great help (I have found) to keep a "diary" of how you feel from day to day whilst taking the medication and jotdown questions you would like to have answers to at your next appointment with the GP or Endo.  Also ask for a print out of blood results (you are entitled to them) so that you and your daughter can keep a check on the levels too. Do as much research as you can too, there is a lot of information out there - mind boggling !  When I was first diagnosed, I just assumed I would take some tablets for a while and hey presto I would be cured and fine and take up again where I left off - I wasn't told that Graves is a life long condition - in fact I wasn't even told I'd got Graves until last October 2015 (diagnosed 2013) !!
    • susan62065
      susan62065 christine57219

      Posted

      Thank you Christine we have booked an appt with her gp for next week and will ask for the printouts, he just said yesterday her t4 was over 60 and t3 was over 30 (he said the count stopped after 30 ) he was very willing to spend loads of time with her and i think she will get great care from him, i went into panic mode yesterday but today have decided the best help i can give her is to research like you suggest and just be there for support, i do appreciate all your fantastic comments on here it helps x

       

  • Pippa26
    Pippa26 susan62065

    Posted

    Hello Susan, I read your post and feel for you and your daughter. My daughter was diagnosed with Graves two years ago, just before she was 15. I remember feeling devastated as it felt like all her future plans had been dashed as well as incredibly worried. A week after her diagnosis as we were driving to visit family I had to pull over so we could both cry and hug one another. We talked and decided that she could still achieve all that she wanted but the path she might take would have a few more twists and turns on the way than we'd originally thought. My daughter was on the same medication as yours. I'm afraid that initially it wiped her out. She calls this time her 'black period' because she felt physically drained and her concentration levels were so poor. Things improved once the medication started to have an effect. 

    She's been on block and replace treatment since, so she is still taking carbimazole and is on Levothyroxine. Reading the information leaflets is scary, I agree. However, after reading the entries posted on this site and after consulting a registered dietitian my daughter has also been taking supplements including selenium and l-carnitine. She is following a gluten free diet which has been much easier than I thought it would be. It was also suggested that she do some exercise (pilates) to maintain muscle tone and core body strength. This has all made a huge difference and two years on, she's about to take her AS level exams, is deciding which Uni's to apply to and is planning her gap year. I feel like I have my girl back.

    It all feels very confusing and overwhelming at first but it does calm down eventually. I wish you and your daughter all the best. 

     

    • karen30256
      karen30256 Pippa26

      Posted

      Hi Pippa

      What do you mean by block and replace? Is this done in the UK? 

      Sorry posting is brief but I am feeling unwell again today!!

      Have had several panic attacks as not yet treated for hyperthyroidism!

      I have to choose between carbimazole and RAI .

      Feel sick with worry yet scared of continuing signs and  symptoms.

       

    • Pippa26
      Pippa26 karen30256

      Posted

      Hello,

      'blocks and replace' treatment blocks the production of the body's natural thyroid hormone which is in overdrive the Graves. This is what the carbimazole does. Levothyroxine replaces it with a more 'normal' level of thyroid hormone. We live in the UK and this has been the treatment my daughter has received. Longer term her Endo is suggesting the options are surgery or RAI but we are researching iodine. Perhaps you could explore taking carbimazole until your condition is more stable and you've read up some more on the options you have.

      all the best. 

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