1. Community
  2. Diabetes and hormone problems
  3. Hyperthyroidism

Graves Disease - 3rd time round

Posted , 4 users are following.

Jackieh26
Jackieh26

Can't believe I've been diagnosed with overactive thyroid again. First diagnosed in April 2008, treated on Carbimazole for a year then managed 17 months symptom free before it returned. So from September 2010 I did another year on meds and have gone nearly 4 years symptom free until last week.......now it's back with a vengence! In the past week I have been all over the place. Have felt so agitated, itchy, heart palpitations, muscle weakness, problems sleeping etc. Has anyone else had this dreaded disease return time after time? I am very reluctant to go down the RAI or surgery route.

1 like, 13 replies

13 Replies

  • linda187
    linda187 Jackieh26

    Posted

    Don't know if you just did the methimazole or carbimazole treatment?  You may have become euthyroid (all thyroid labs within normal range) but if your antibodies (TSI and TRab) are not in the normal range, you are not considered in remission.  Also, you need to avoid the sweetener Aspartame found in soft drinks and other foods.  Eat well, avoiding sugar and gluten.  Take supplements to keep your health in balance.  And majorly avoid too much stress.  Stress triggers Graves disease.  I was diagnosed 10 years ago.  For the first 2 years on 10 mg of Methimaole, my FT3 and FT4 were normal but my TSH remained at 0 until I added L-carnitine 3,000 mg, vitamin D, 1000 mg and Magnesium 200 mg.  Later on replaced the regular L-Carnitine with Acetyl-L-Carnitine.  Now off of the Carnitines.  My labs are all normal and my methimazole dose was decreased first to 5.0 mg daily and then to 2.5 mg daily which I am still on.  I feel good on this and if I have to take this the rest of my life, I am fine with it.
    • Yeroliza
      Yeroliza linda187

      Posted

      Hi linda,

      I too am in "remission" at the moment but don't really trust it to stay that way forever.   I notice you advise to stay way from sugar.  Do you include honey and maple syrup as well.  I cannot seem to give up something sweet in my tea and cofffee and I do limit myself to one cup of coffee per day and three cups of tea, so instead of white sugar I have maple syrup instead.  Is that also bad for the thyroid? I don't drink anything else except pure fruitjuice or water when thirsty.  I admit I have a bit of a sweet tooth which seems to have become stronger the older I get! I have had full blood checks very recently and all is ok but the doc said my cholestoral was up and I was wondering if that is due to going over to honey and maple syrup?

    • jean34329
      jean34329 linda187

      Posted

      Dear Linda

      I am a novice to this but could you please explain what these antibodies TSI and TRab mean?

      I have only had the TPOA done. It was less than 33 , TSH was 0.17, T4 16.5, I have a m7ultinodular goitre. Not yet started treatment or even seen by endo yet. I am really, really scared.

      Jean 

    • linda187
      linda187 jean34329

      Posted

      TPO antibodies measure inflammation.  Both Graves and Hashimoto patients could have high TPO antibodies.  Every lab has different norms for levels of TSH, Free T3 and Free T4 so you have to post your labs norms beside your results.  It is always a good idea to ask for a paper copy of any lab work done on you and to keep your own file on them.  Tsi stands for thyroid stimulating immunoglobulions and a high value is indicative of Graves disease.  TRab stands for Thyroid Stimulating Hormone Receptor Antibody and is another indicator of Graves. Both TSI and TRab need to be low to be considered in remission.  You may have an autoimmune disease like Graves or Hashimoto's or you may just have a thyroiditis.  Your Endo should be checking for antibodies and measuring TSH, Free T3 and Free T4 routinely.
    • linda187
      linda187 Yeroliza

      Posted

      I have insulin resistance and I cannot eat maple syrup or honey.  They give me a rapid high and a rapid crash.  I know a lot of people think because Maple syrup is natural that it isn't as harmful as white sugar but it is, especially if you have diabetes or insulin resistance.
    • jean34329
      jean34329 linda187

      Posted

      Hi Linda

      Thank you for this info. May I clarify something please. With the TPAO result being 'less than 33' does this mean that I have had//got thyroid antibodies? Does everybody have TPAO ?

      Am I hyper or hpo?

      Jean

    • linda187
      linda187 jean34329

      Posted

      The TPAO result does not define hyper or hypo. (In the States and Canada it is called TPO (I am assuming it is the same test).  What defines hyper or hypo are your TSH, Free T3, Free T4 results along with the ranges for normal for your lab.  The TPAO result indicates the degree of inflammation in your gland so yes everybody can have TPAO levels that are within the normal range, again you would see this with a paper copy of your labs indicating the normal range for your lab.
    • Jackieh26
      Jackieh26 linda187

      Posted

      Thanks for your reply Linda. Each time I've been treated with only carbimazole, until my levels return to within a normal range. The consultant did suggest RAI when it returned for a 2nd time but I wanted to go down the meds route again. So 3rd time round its back on the carbimazole again. Its been a difficult week. Think i've gone through every emotion and been very on edge. I was off work for a couple of days as I was so bad, but got back midweek on the understanding that my boss "bared with me!" I will soon be on 6 wks holidays (as i work in a school) and it cant come quick enough. I have been all over the place emotionally and physically. I have a new partner since my previous episodes of this disease and this has really come as a shock to him. He does not know what to say or do to help and feels that i hate him! Roll on the carbimazole kicking in!!
    • linda187
      linda187 Jackieh26

      Posted

      Are your antibodies normal when you have discontinued the Carbimazole?  You should not discontinue it unless they are.
  • jean34329
    jean34329 Jackieh26

    Posted

    Hi Jackie

    Just seen your message. and thought that I would reply albeit I am a novice to this having been recently diagnosed with a thyroid disorder myself but I have not yet started any treatment. If it helps you to know here are my blood results so far.

    MAY 4 2015.

    TSH was 0.17. T4 16.5, TPOa less thn 33.

    T3 was not done.

    Seeing an endocrine surgeon on Friday re signs and symptoms which are very similar to yours, plus I have a multi nodular goitre seen on CTPA scan as an incidental finding.

    I have never felt so ill in my whole life.

    I joined this Forum and have received a tremendous amount of support.

    Main thing is to hang on in there .

    Jean..

    I

    • Jackieh26
      Jackieh26 jean34329

      Posted

      Hi Jean. Thanks for replying. I have had a hellish week. All the typical Graves symptoms have descended on me at a rapid pace. I went to the Drs on Monday an absolute wreck. Am pretty sure I looked like a junkie sitting in the waiting room as I was rattling! My doctors consultation consisted of me saying "I think my Graves has returned". She took a blood test and said phone her on Thursday for results. I almost launched myself at her, saying "what do I do between now and then!" I was in a high state of anxiety. Cant get beta blockers as i'm asthmatic so it was pretty much grin and bare it till Thursday. However, I got a call from her at Tuesday teatime to confirm my fears that I was overactive again and to get back on the carbimazole. I did manage to remember to ask my levels (something I learned from my previous episodes is very important to do) and my T4 was 38 (low compared to my diagnosis of 76 the last time) and my TSH is on the floor at 0.03 but I do think I caught this early this time as I knew the tell tale signs of the disease. Another thing I have also learned, you know your own body, you go with that and don't just take what the doctors say as gospel. Don't be afraid to ask for a more detailed explanation or question something you don't understand.
  • jean34329
    jean34329 Jackieh26

    Posted

    I think I am hypo yet have similiar signs and symptoms. I would be grateful if someone could explain this horrible condition. The anxiety and depression are overwhelming.

    Jean

    • linda187
      linda187 jean34329

      Posted

      I am not clear what you mean.  Are you saying you think you are hypo but have signs of hyper?  You could have Graves and Hashimoto's or just Hashimoto's.  People with Hashimoto's swing back and forth extremely on very little medication.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.