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200mg Eltroxin and still very high TSH

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tintin1012000
tintin1012000

Looking for advise while I wait for Endo appoitment, just got my blood test results back and im at 51.9 for TSH, I have been unwell for past 3 weeks, I have been on 200mg for the past 3 yrs and my TSH has been fairly stable around 3-7 but now has jumped to 51.9, my doc has upped my eltroxin to 225mg but has hanyone ever been on more that 200mg and does anyone know why my levels would be so strange all of a sudden ?

0 likes, 12 replies

12 Replies

  • linda187
    linda187 tintin1012000

    Posted

    What was the cause of your hypothyroidism in the first place?  Are you taking any supplements, eating coconut oil, eating foods with high iodine content?
    • tintin1012000
      tintin1012000 linda187

      Posted

      Hi, ya I have hypothyroidism for the past 10 yrs, hospitalised origanlly with a reading of 120, but everything was fine up to a month ago when I started to feel sluglish, so eventually went to doc last week,  no supplements, I would eat coconut milk very reg in Thai food etc .was on anti depressants for yrs but am off them for the past 2-3 months, maybe the anti depressents were masking my raising TSH levels and only came to light after I came off Anti D's
  • linda187
    linda187 tintin1012000

    Posted

    What was the cause of your hypothyroidism?  Did you have Hashimoto's?   Unfortunately many docs do not investigate the cause of hypothyroidism although they should.  I would ask my doc to do antibody testing for Hashimoto's, and testing for adrenal function.
  • susan4301
    susan4301 tintin1012000

    Posted

    Wait what? Sorry this isn't an answer but I was under the impression from my doctors that they try to treat hyperthyroid for 2 years then if that doesn't work they do surgery. Is that not right? Now I am a bit confused because my doctor made me go for the surgery after 2 years of treatment fail. 

    Also, i find thyroid levels (or at least mine) change really fast or drasticly for some reason.

    • linda187
      linda187 susan4301

      Posted

      tintin does not have hyperthyroidism, she has severe hypothyroidism.  Often docs do not investigate the causes of hypothyroidism as much as they do for hyperthyroidism.  Some people have Graves and Hashimoto's.  People with Hashimoto's are very sensitive to both antithyroid meds and thyroid replacement hormone with widely fluctuating levels.  So you may want to find out if you have that.   There are some of us thyroid patients who realize the decision about what to do about our thyroid disease is ultimately ours and ours alone.  Docs can make suggestions only but we have the final say.  Many of us are learning that most Endos do not know enough about thyroid disease.  There is even a petition circulating that is demanding that endocrinologists be made to keep up with better training about thyroid disease.
    • susan4301
      susan4301 linda187

      Posted

      Sorry I am dumb for assuming because this is the hyperthyroid forum... But mine really stopped giving me trouble since I removed it :P It can have a new home in a jar somewhere for research as long as it ain't bothering me.
    • sandra94977
      sandra94977 linda187

      Posted

      Hi, I would like to sign the petition you mention, do you know where I can do this please?
  • tintin1012000
    tintin1012000

    Posted

    Thanks for the replies ladies, Susan, i never heard of anyone getting their thryoid removed after 2 yrs, I fear that it might be the only option for me as the levels are not right, I will be asking for antibody testing for Hashimoto's, and testing for adrenal function along with Testrone as this was also out of normal levels a few yrs ago.
  • linda187
    linda187 tintin1012000

    Posted

    I am wondering if you have a conversion problem.  Eltroxin is T4 which is the inactive form of the hormone.  T4 normally converts to T3, the active form.  If there is a problem with conversion, you will experience the results you are now getting.  I believe they determine this by a test called Reverse T3.  You might benefit from a T3/T4 thyroid drug hormone replacement like Armour or adding Cytomel to your Eltroxin, rather than just taking T4.  A lot of people have this problem with straight T4.  Still it would be good to know the cause of your hypothyroidism in the first place. 
    • tintin1012000
      tintin1012000 linda187

      Posted

      I was on T3 a cpl of yrs back, hard to get here in ireland and expensive, I presume ur in Uk, how much does is cost there ?
  • linda187
    linda187 tintin1012000

    Posted

    Well I was put on Cytomel in the early 1990's and at that time it cost $12.00 a month.  But then politics and some company bought out the original company and the cost rose to $200 a month and that was for a low dose.  I don't know how much Armour costs.  It is the two hormones combined.
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