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hyperthyroidism/graves disease

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ingrid_22
ingrid_22

I was told  I had Grves disease by my TBII test was 70 % (ref range <OR16)however my  thyroid antibodies panel was negative( anti-thyroid peroxidase and anti-thyroglobulin TgAb)  Tsh 0.01 Free T4 29.4 pmol/l  and Free T3 20.5 pmol/l,  radiation uptake scan 74%.. Now last week after tapazole 15mg per day for two months my values are TSH 0.01  Free T4 10.7 pmol/l and Free T3 5.3 pmol/l. I started yesterday by deceasing my tapazole to 7.5 mg and 1000 L carnitine. Does anyone know if i continue on the tapazole and L carnitine will I become hypo then? I am quite confused about the values when hyperthyroid becomes hypo or normal. Will the tapazole keep taking me lower and when will my tsh rise since me other two values are normal? Any help would be appraciated  

0 likes, 7 replies

7 Replies

  • Guest
    Guest ingrid_22

    Posted

    Hi ingrid22, I was diagnosed with Graves' 2 years ago. My thyroid antibody level was also within normal range. However, my TSH receptor antibody level was elevated (typical for Graves'wink.

    There are three kinds of TSH (or Thyrotropin) receptor antibody types (activating, blocking, and neutral).

    TBII refers to Thyrotropin Binding Inhibitory Immunoglobulins and the effect of these antibodies is to block the thyroid receptors that are normally activated by TSH (the thyroid stimulating hormone).

    I am not sure but 70% could indicate that ratio of TBIIs within the mix of TSH receptor antibodies. 

    To prevent you from becoming hypothyroid your endocrinologist will monitor your thyroid levels and decrease the Tapazole dose accordingly. The usual treatment plan is to suppress the overproduction of thyroxine until the thyroid (hopefully) normalises and the control mechanism (that keeps the thyroid levels within range) is working again.  In my case, this took about 18 months on a low dose of Carbimazole.       

    • ingrid_22
      ingrid_22 Guest

      Posted

      Hi danR, 

      Thankyou for your reply. My endo has not really done or said to much other than made arrangements for me to drink the I-131 radiation therapy. Which I will wait until summer to decide. My family GP has a monthy lab request at the lab for me. The endo had me on 15 mg of tapazole since december but last week my T3 and T4  (free)  were normal  Even my T4 was a lower value from lab work when i was in my 40's. Only my TSH is supressed now. I was concerned about taking the 15mg still of tapazole because I do not want to be hypo thyroid since the t3 and t4 are fine. I lowered my tapazole to 7.5 mg a day on sunday and started taking 1000mg of L carnitine in hopes in 3 weeks my tsh will go up? Is it possible for the t3 and t4 to go lower into the hypo range with the tapazole and L carnitine? I am quite concerned about going hypo due to the fact my tsh normally is .80-90 for the past 25years before having graves , The hypo would really suck for me as I am hyperactive and I am sure it would be a huge change. I hope to lower the tapazole each month after the labs are in and just take L carnitine?

      Anti- thyroid peroxidase and anti thyroglobulin (TgAb) were negative and my Thyrotropin Binding Inhibitory Immunoglobulins were high at 70% normal value is below<16%. When graves began Oct /2016 tsh 0.01 free T4 29.4 pmol/l free T3 20.5 pmol/l and quite bad leg and arm temors and heart pounding. I am on a beta blocker 25mg per day down from 50 mg .

      Thanks again smile

    • Guest
      Guest ingrid_22

      Posted

      The fact that TSH stays suppressed in Graves' patients even after T3 and T4 have normalised is documented in medical articles. Some research seems to suggest that the TBIIs play a role in blocking the release of TSH by interfering with the pituitary gland.  

      Just to let you know I have been taking 500 mg Acetyl-L-Carnitine (per day) for nearly 2 years. I initially took it because of bad muscle pain in my arms and legs but it might well have contributed to my recovery. When I was diagnosed with Graves' my T4 was above 60 pmol/l and I was  put on 30mg Carbimazole. Towards the end of my treatment I was on 2.5mg Carbimazole. I stopped taking medication in Sept and so far I am ok. My next blood test is in April. 

      Hope you will be doing well on a lower dose of Tapazole and gradually recover.

       

  • linda187
    linda187 ingrid_22

    Posted

    I was diagnosed with Graves in 2007 and on 10 mg of Methimazole my levels for FT3 and FT4 fell into the high normal range and my TSH was less than 0.001  All these tests remained at the same exact level for two years while I was on a 10 mg dose.  Then I added 3,000 mg of Regular L-Carntine and my TSH rose slightly, i..e from less than 0.0001 to around 0.12 or 0.15.  Only then did my Endo decrease my dosage.  While I did not have the symptoms I had when I was untreated, I was not happy that my TSH would not rise so I took Acetyl-L-Carnitine.1,000 mg initially and was shocked when it drove my TSH up extremely quickly.  I also added vitamin D, 1,000 to 5,000 mg and Magnesium 200 mg.  As my TSH rose into the normal range, my other two Tests (FT3 and FT4) dropped to the bottom of the normal range.  So if I were you, I would not decrease the dosage of your meds until you see changes in ALL your tests, including TSH.  The research article I read recommended hyperthyroid patients take 3,000 to 4,000 mg of Regular L-Carnitine daily.  If i used the supplements I got from Health Food stores, i.e. capsules, that would have meant I would have had to take a lot of capsules so I got a prescription for L-Carnitine in that dosage and it was in liquid form and I was given a syringe to measure the dosage.  That way it was easy to take that dose.
    • ingrid_22
      ingrid_22 linda187

      Posted

      Hi Linda,

      Thankyou for your reply. My endo has not really done or said to much other than made arrangements for me to drink the I-131 radiation therapy. Which I will wait until summer to decide. My family GP has a monthy lab request at the lab for me. The endo had me on 15 mg of tapazole since december but last week my T3 and T4  (free)  were normal  Even my T4 was a lower value from lab work when i was in my 40's. Only my TSH is supressed now. I was concerned about taking the 15mg still of tapazole because I do not want to be hypo thyroid since the t3 and t4 are fine. I lowered my tapazole to 7.5 mg a day on sunday and started taking 1000mg of L carnitine in hopes in 3 weeks my tsh will go up? Is it possible for the t3 and t4 to go lower into the hypo range with the tapazole and L carnitine? I am quite concerned about going hypo due to the fact my tsh normally is .80-90 for the past 25years before having graves , The hypo would really suck for me as I am hyperactive and I am sure it would be a huge change. I hope to lower the tapazole each month after the labs are in and just take L carnitine?

      Thanks again

    • linda187
      linda187 ingrid_22

      Posted

      My Free T3 and Free T4 were fine when I took Regular L-Carnitine.  With Acetyl-L-Carnitine which drove my TSH well into the normal range, my Free T3 and T4 were right at the bottom of the normal range.  But I watched my values and adjusted accordingly frequently so though they were at the bottom, I was never out of the normal range.  Very fine balancing act this is.
  • ingrid_22
    ingrid_22

    Posted

    Thank you for all the great input !smile So two months have past by rather quickly and I have a couple other signs. When I was orginally diagnosised with graves disease in Jan 2017 by my endo from my radiation uptake scan which was  74% and my TBII were 70% (which normal is <16%) I did have 3 nodules in the thyroid from the ultrasound my GP did in November/16 after reviewing my tsh t4 and t3. Those nodules were never checked by fine needle biopsy or even mentioned by the endo. He just booked me in to drink the radiation I131 and that was suppose to be the end of it. Well what if they were cancer nodes and I drank the radiation wouldn't i need to have my thyroid removed anyways? I have had a hard lymph node on the back of neck  left side since december or so and I told my GP, they werent to concerned?? Well two weeks ago the glands under my left armpit were swollen for 3 days so i headed of to the doctor again who booked me in to the breast assessment clinic?I could of told them it wasnt my breast... however the radiologist told me that I should have the nodes monitored and over 1 cm fine needle biopsy which one is over 1 cm?? The next day I called my docotor and told him this and he booked me in for another ultrasound which would be 6 months after my first one. Today I had that,  so we will see if the 3 nodes have grown.

    Do most people have nodules and do they get them checked also the lymph node thing can't be to good I figure. Should you be drinking I131 if it is thyroid cancer?? Seems to me they are assuming alot with out checking everything?? any advice would be appreciated.tsh 0.01 free T4 14.1 pmol/l and free T3 5.9 pmol/l as of march went up a bit from February after lowering my dose of tapazole to 7.5 mg per day and supplemented with 1000mg L carnitine.

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