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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 

0 likes, 70 replies

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  • susan62065
    susan62065

    Posted

    For some reason i am not able to reply to comments maybe because i am new to the forum, Pippa that is exactly how i feel as a mum you want to protect and take it all for them don't you, luckily my daughter is level headed and hopefully the doctor has got through to her how serious this is and can become, i hope she has an easy ride on the medication, he told her to maybe take a week or so off work but she is feeling guilty but reading all on here i think she is best to until the meds have started working (hopefully working) thank you all again x
    • christine57219
      christine57219 susan62065

      Posted

      Susan, please tell your daughter that we all (Graves patients) feel guilty about many things but trying to push yourself makes everything worse !  Her body and her mind are working faster than they should, taking more energy, using our mineral/vitamin stocks faster - everything is working overtime and takes a great toll on the body and mind.  She has to be a patient in order to feel even a little better.  A top Endo describes Hyperthyroidism as "the body in crisis".   It's true, I can vouch for that.
    • christine57219
      christine57219

      Posted

      ** that should have read - patient patient wink
  • evergreen
    evergreen susan62065

    Posted

    I started on carbimazole just over a week ago and have no side effects at all despite being really sensitive to many drugs. I did have a bad reaction to the propranolol though (vomiting and severe debilitating fatigue). As others have said it is a rare side effect of carbimazole to lower the white blood cell count and so it is essential to report any infections such as sore throat, mouth ulcers, fever etc immediately and stop taking it until you know the results.
    • karen30256
      karen30256 evergreen

      Posted

      Hi evergreen

      May I ask you what dose of carbimazole you were prescribed?

      Is it possible to send your blood results at all?

      Were all the thyroid screening tests done?

      Did you have any anibodies?

      Hope you don't mind my asking. I am fed up wih beng fobbed off.

      Karen

    • evergreen
      evergreen karen30256

      Posted

      Yes, as I am terrified of new meds, the doctor put me on a low dose of 15mg to start with and has just upped it to 20mg. He wanted to go higher but agreed due to my sensitivity to drugs to wait until my blood test in two weeks time.
    • evergreen
      evergreen

      Posted

      I don't have my results as haven't asked for them. Doctor just said I was very high. No antibody testing done as far as I'm aware. I had an esp test and calcium/bone test. No isea what the results are. I suppose I ought to ask but I don't like to.
    • evergreen
      evergreen

      Posted

      Meant ers test! lol
    • janet50023
      janet50023 evergreen

      Posted

      Hi evergreen

      I was wondering if you could tell me how the thyroid eye disease is diagnosed. I am scared of having this condition. I suffered from dry eyes and headaches. In retrospect I am now wondering if the real probllem was with due to a thyroid eye?

      Is there a definite, infallible way of diagnosing a thyroid eye or indeed if one has ever had one?

      I would be grateful for other members comments on this very important issue. Many thanks to everyone in advance.

       

    • evergreen
      evergreen janet50023

      Posted

      Hi Janet, I don't know much about it except that only a small percentage of people with graves disease get it. It's supposed to feel gravelly and sore. If you smoke you have a much higher chance of getting it. I think I read somewhere that if you don't smoke you only have a 3% chance of getting it, but I might have recalled that wrong.
    • icecool
      icecool evergreen

      Posted

      I have been reading about the relationship of thyroid disorders with muscle and joint pains. The author is a dr but I am unsure as to whether or not one is allowed to put links onto this forum.

       

    • linda187
      linda187 janet50023

      Posted

      Graves patients can get dry, irritated, red eyes and/or swollen, protruding eyes.  Mine were extremely dry and my opthalmologist had to insert collagen plugs into my tear ducts but since my antibodies and thryoid levels normalized this year, my eyes are not dry now.
    • cindy30745
      cindy30745 linda187

      Posted

      Linda

      I had severe headaches and throbbing pain in one eye.

      I felt as though strands of hair were being pulledindividually. I could neither wash, brush or comb my hair wwthout producing intense pain. If I just accidentlly touched my head or caught a strand of hair my scalp would tingle and throb for ages and ages.

      The crown of my head would throb.

      I had to wear sunglasses 24/7 due to photosenstivity.I could not stand the sun at the best of times but am tolerant to what bit we get here now!

      SO do you think this sounds like thyroid eye disease?  I am wary of having any treatment due to the possibility of TED.

      Thanks in advance of your help.

      Touch wood!

      caught a strand of hair it would throb  being pulled by a strand of hair at the time scalp was being ulled.

      My eyes were dry with concretions.I had a posterior vitreous detachment but no retinal tears, just floaters , blurred vision, and occasional bright flash of light. One eye was red and bloodshot.

      I did not notice any bulging etc.

      Does this sound like the thyroid eye? Is it safe to have the RAi and/or carbimazole from the thyroid eye point of view?  

      No one knew then that I had a thyroid problem.

      If you had a thyroid eye would you be eligible for carbimazole or radio active iodine.

       

    • cindy30745
      cindy30745 linda187

      Posted

      whoops sorry Linda. I have cataracts as well as a history of dry eyes.

      I sent the previous msg without editing it first. My apologies.

       

    • linda187
      linda187 cindy30745

      Posted

      Definitely you have to treat with Carbimazole whether you have eye disease or not.  If you have eye disease you need to be seen by an Eye specialist who treats TED eye disease.  And you need to avoid RAI because you can get TED even 7 years after you have been treated with RAI. RAI makes it worse.  I have not heard what you described as being TED but I can't say for sure. 

       

    • cindy30745
      cindy30745 linda187

      Posted

      Linda

      Thank you for your response. I need to get some carbimazole but I am scared of buying it online in case it is defective etc.

    • linda187
      linda187 cindy30745

      Posted

      Carbimazole is a prescription drug you have to get from a doctor.  Don't you get your prescriptions filled at a pharmacy?
    • linda187
      linda187 cindy30745

      Posted

      Indirectly.  It blocks your excessive thyroid hormone and it is the excessive hormone that affects the heart, so it should have a positive effect.  What will really affect your heart adversely is untreated hyperthyroidism.  Untreated hyperthyroidism can cause thyroid storm which is life-threatening.
    • cindy30745
      cindy30745 linda187

      Posted

      Thanks for the info. My pth is also high. Nil done about this as well.
    • linda187
      linda187 cindy30745

      Posted

      You need to see a good Endocrinologist and get a proper diagnosis. 
    • cindy30745
      cindy30745 linda187

      Posted

      I know thats the problem though isn't it? Esp in the UK.

      Where are you/

    • linda187
      linda187 cindy30745

      Posted

      I am in Canada.  Why is that a problem?  Your GP should refer you or you can go to Emergency and they will refer you.
    • cindy30745
      cindy30745 linda187

      Posted

      The NHS is hopeless.I tried to send u a link but it is being modded.
    • cindy30745
      cindy30745 linda187

      Posted

      I sent you a link to a video on the parathyrod gland.Similar signs and symptoms to mine plus high pth.
    • linda187
      linda187 cindy30745

      Posted

      You can't post links to the Board.  You can only send them by email by clicking on the envelope under the person's name.
    • linda187
      linda187 cindy30745

      Posted

      You need to get your primary care doctor to assess and refer you. This is not the correct Board to post parathyroid questions.  This Board is for hyperthyroidism. 
    • cindy30745
      cindy30745 linda187

      Posted

      Thank you Linda

      Apparently there is a link between hyperthyroidism and parathyroid disease.

      Thanks for your reply.

       

    • icecool
      icecool Emis_Moderator

      Posted

      Thanks Alan. I did not know there is a limit. Thanks once again for clarifying the situation.

      Regards

       

    • icecool
      icecool linda187

      Posted

      A and E do not refer anymore. They tell patients to see their GP. GP's are loathe to refer because of financial constraints.

      It is a terrible situation all in all.

      I expect the situation where you are is completely different.

       

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