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Thread: Desperately looking for help.

  1. #1
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    rajesh_vl's Avatar

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    Aug 2010

    Desperately looking for help.

    I'm 37 year old Male.
    During 1998-99 ( at the age of 25) I was under too much stress, followed by episodes of panic attacks for couple of years.
    I consulted a dozen cardiologists then. They had a same opinion that nothing is wrong with my heart and started Rivotril(Clonazepam).
    In 2001 I was diagnosed for Hyperthyroid (T3 and T4 was normal and TSH was bit below normal) and was on Neo-mercazole(carbimazole) 5 mg for 5 years.
    In 2004 I was operated for low grade bone tumor on left scapula.
    In June-2006 doctor asked me to stop Neo-mercazole(carbimazole) then my TSH was 2.14 and T3, T4 also in normal range.

    After that gradually I started pseudo-vertigo and weakness.
    I was checking thyroid function regularly my T3 and T4 never show much variation but TSH was dropping consistently.
    After around 16 months my TSH level dropped from 2.14 to 0.52.
    My GP and endocrinologist had a firmly denied relapse of hyperthyroid, since T3,T4 and TSH was "still" in normal range.
    I was on leave for more than 3-months so I was desperate to get to normal life so I started Neo-mercazole(carbimazole) 5 mg on my own.
    I was also taking some herbal medicine for all my problems.
    Somehow I started feeling better after some time (somewhere in April -2008).

    Though my anxiety was much controlled, I was generally feeling tired all the time.
    I could not walk for more than 10 minutes, on TMT I was fully exhausted and stopped after 4 minutes(TMT test- 8/8/2008).
    MY GP denied any organic problem and asked me to consult psychiatrist.
    Psychiatrist prescribed me Zosert 50 mg and I had really severe panic attack.
    I just stopped consulting my GP and psychiatrist.

    I thought I'll try homeopathy for this fatigue problem.
    But then one of colleague insisted that he knows one really good endocrinologist and I should consult her.
    I talked to her, she also asked me to test T3, T4, TSH and also thyroid antibodies.
    My T3, T4 was in normal range and TSH was 1.81 and my thyroid antibodies tests were negative.
    she asked me stop Neo-mercazole(carbimazole) 5 mg and directed me to new psychiatrist.
    Somewhere in April 2009 I stopped Neo-mercazole(carbimazole) and talked to psychiatrist.

    Psychiatrist told me that I'm suffering from CFS(chronic fatigue syndrome) and CFS patient tend to develop drug sensitivity.
    He also told me that there is no medication for CFS and put me new diet chart and started GET (graded exercise therapy) along with beta-blocker(Inderal) and Rivotril(Clonazepam) which I was taking all the time..

    Nothing worked, day by day I'm feeling more tired and anxious and cannot stand in sunlight or near heat, it's weird feeling, more frequent panic attacks, anxiety and phobias...
    It's been 4 months I'm at home.
    Somehow I feel my severe anxiety is due to my lower TSH value.
    Now my TSH level is 0.58 (dropped from 1.81 in 17 months), doctor again denied role of hyperthyroidism.
    Recent (24/7/2010) thyroid function test results :
    T3 1.57 (normal range 0.8 - 2.0)
    T4 9.32 (normal range 4.8 - 11.8)
    uTSH 0.48 (normal range 0.35 -5.5)
    I had tested TSH at one more lab and that shows
    Ultra TSH 0.58 (normal range 0.49 - 4.67 )

    Other important info is I'm on low dosages of beta-blocker(Inderal) and Rivotril(Clonazepam) for last 10-11 years.

    So many questions come to my mind?
    Why my TSH should drop if we are assuming remission period?
    If my thyroid antibodies test was negative what is decreasing my TSH level?
    Why doctors are ignoring earlier trend of TSH drop, doesn't it indicate possibility of TSH going below normal in near future?
    Is it really CFS?

    I would appreciate any suggestions... what should I do, whom should I consult.
    in advance.

  2. #2
    Junior Member Achievements:
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    Ayse's Avatar

    Join Date
    Aug 2010
    Hi @rajesh_vl ,

    I'm new here but I've been hyperthyroid with Graves disease for many years. Why were you diagnosed hyperthyroid in 2001 due to TSH? Although a low or in my case undetectable TSH is relevant to hyper it is the free T3 and 4 being high that would get you a diagnosis, you said your T3 and T4 were normal or have I picked you up wrong?

    TSH is a pituitary hormone, it rises when hypo as it sees thyroid is struggling to put out hormones, when hyper the thyroid is spitting out too much hormone so tsh falls.

    TSH should never be relied on for a diagnosis of thyroid disease, it should always be based on the free T's. Your bloods look good and also good that antibodies were negative.
    Maybe your TSH has fallen due to the other medications you are taking or because your T3 & T4 are actually at good levels?
    You probably made yourself hypo taking neo mercazole on your own and that is why you were so tired, be careful of anti thyroid drugs, they block the thyroid and need careful monitoring.

    Again when your tsh was at 2.14 this would be due to the neo mercazole, luckily it was only 5mg you were taking and your tsh fell again as thyroid wasn't being blocked by atd's so levels of free t's would have stabilised again.

    Atd's don't calm you down, they stop the thyroid producing hormone and can dampen down the antibody attacks, they can also affect the white blood cells, liver function and a whole host of other things.

    Sorry and for me this is a first but I agree with endo and gp, assuming you haven't made a mistake in post regarding your FT3 and 4 always being in normal range you haven't been hyperthyroid, TSH levels do not cause symptoms of anxiety etc in hyperthyroid, it's the high levels of thyroid hormones that cause all the trouble.

    Sorry I know that's not what you wanted to hear, I don't know anything about CFS but maybe you could ask gp if the being on the neo mercazole for so long has
    knocked something out of whack? Thyroid results look fine, don't worry about TSH it's a stupid test, I am hypo now but my tsh has been undetectable for years
    and have to constantly fight with gp's who say I am hyper because of it even when my FT4 was 7 range 9-21 I had to fight them. I would ban the TSH test altogether lol.
    Hope you feel better soon



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