GRAVES DISEASE

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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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  • Posted

    Hi. I am 29 female. Was diagnosed with graves in December 2014. Have been on carbimazole since then. 20 mg then 40 and then 60mg. Now I am back to 20 mg as my reports have normalised. I think the effects mentioned depends on individuals. I had no side effects. So I think you shouldn't worry before taking the medicines. Just be happy and keep her happy. Give her confidence. All the best
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    • Posted

      Hi daku

      Can I ask you what your thyroid hormone and antibody levels were when you were prescribed carbimazole?

      How often were your blood levels checked?

      Have you got any thyroid nodules?

      Hope u don't mind my questions.

      Thanks.

      What were your blood levels?

       

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    • Posted

      I can find mine and give you mine if it helps in any way.  I have thyroid nodules and also a smallish goiter.  I will find my results when first diagnosed and put them on.
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    • Posted

      Blood results at diagnosis August 2013:-

      TSH         0.04 miu/L  (0.34 - 5.6)  Below low reference level

      FT4         45.2 pmol/L  (7.5  -  21.1)  Above high reference level

      FT3        15.09 pmo/L  (3.0  -  5.0)  Above high reference limit

      TRabs      141        (0 - 15)

      TPO         403         (0 - 10)

      Reads like a horror story !

      More recently 4th April 2016:-

      TSH            37.97        (0.34 - 5.6)  Above high reference limit

      FT4              6.3           (7.5 - 21.1)  Below low reference limit

      FT3              5.7           (3.0 - 5.0)    Above high reference limit

      After these results my Endo stopped all meds on 4th April (Carb & Levo) and I had a blood test on 12th April :-

      TSH      3.99

      FT4       13.9

      FT3        7.2

      It reads like a horror story !  Now awaiting to hear from Endo - I am starting Carbimazole Titration when the endo thinks my levels are good enough - that's if I don't go Hyper with a vengeance again like I did the last time my meds were stopped after being on Block & Replace for over 20 months - I think it was a thyroid storm, very scary.

       

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    • Posted

      Thanks for these Christine. I agree with your comments that it is a indeed a horror story, one that is much too common. However thankfully things are being looked at and sorted.

      ​I have just been researching levothyroxine and some of the other thyroxine producrs, it is quite interesting actually.

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    • Posted

      Hi Christine

      My e mail system is messed up hence u getting someone elses name on the postings.

      If you wish I can send you my e mail address to void any further confusion.

      Anyway thank for the info. It is very interesting and helpful and expliains why I feel very similar to yourself.

      ​I had blood results similar to yours . The TSH varied over the months but no one informed me that the TSH can vary throughout the day. This led me to do further research and I discovered that various studies on volunteers showed that the TSH can vary every thirty minutes!!

       

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    • Posted

      Surely Karen. I have no issues. I also had a the road uptake test. They injected me with radioactive iodine tracer and scanned my thyroid after intervals. It showed very high uptake, swelling but no nodes, thankfully. My initial blood tests were total so here are the values. T3-13.9 T4-30 and TSH<0.001 nearly zero. Now my blood test was free one. Values now are FT3 2.65 FT4 1.02 and TSH 10.549. HOPE IT HELPS
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    • Posted

      Hi karen. Yes, my heartbeat is normal now. Has been for quite sometime. Betablockers were stopped then. I dint understand what you meant by anti bodies? T3 T4 TSH are repeated every 3 months. ANTI-TPO was done once to confirm graves.

      Hope I was helpful

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    • Posted

      What was the name of the beta blockers? Did they help?

      Sorry to hear this. it is truly horrible.

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