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What's going on?

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jennifer97819
jennifer97819

Diagnosed with hyper/negative for Grave's, just T3 toxcicty. All numbers, TSH including Ft3 and 4 very low. Put on Tapazole, 20mgs (10 mgs am/10pm). Numbers held thru beginning of 2016. My trend since November of 2015 is as follows (based on BW results that graphs my changes between draws):

T3 free: 1/21/16: 3.2pg/mL T4 free: .78pg/ml

4/26/16: 3.6 .65

TSH (Draw dates different on some)

11/1/15 2.5

1/1/16 .5

4/26/16 5.93

The change in TSH HAS BLOWN MY MIND!

I don't have my initial or the few months post diagnosis. Had thyroid enlargement per U/S, aside from that, U/S unremarkable in May of 2015. I felt okay from last April up until the noticeable change in symptoms that has gotten steadily worse and amidst slight dosage changes. I recently met with an endo specialist and am having labs, again 5/20/16. Lens will be discussed in 5/27 and the Endo dropped my tapazole to 5 mgs am/PM. I have further altered the dose and am alternating 5mgs 1× eod, 2.5 eod.

There is no middle ground for me. Insomnia, trouble sleeping, loss of appetite (lost 10lbs.2-3 weeks around end of March), chest pain relieved by cold water, excessive watery BM's, shaky hands, hypertension, migraines, vomiting and nausea and recently experienced a rather severe hematoma in the left eye that seemed to spread. I've been ordered by my PCP to take 4 weeks FMLA because the saddest part about hyperthyroidism is that you want to be understood, but no one else can understand unless they've been there before.

Just wondering if anyone else out there has had a similar experience or is currently going through the same thing. Advice? Thoughts?

0 likes, 7 replies

7 Replies

  • linda187
    linda187 jennifer97819

    Posted

    With the extreme swings in lab results when you are on Tapazole, I have seen this with patients who have Hashimoto's thyroiditis.  You need to know your anti-TPO level and TGAb antibody level to confirm this diagnosis. You might want to ask your doctor if this is a possible diagnosis.  Hashimoto patients do better controlling their hyperthyroidism with natural means such as L-Carnitine or Bugleweed, Motherwort and Melissa.  Those that are given Tapazole and/or Levothyroxine when they swing too hypo, have extreme difficulty controlling their thyroid hormones.
    • jane95340
      jane95340 linda187

      Posted

      Is L Carnitine recommended for people with epilepsy I was wondering?

       

    • linda187
      linda187 jane95340

      Posted

      Carnitine is an amino acid that is normally found in the body.  I have not read anything about how it would affect people with epilepsy.  However, if you are hyperthyroid and to a lesser extent, even hypothyroid people suffer muscle problems if their carnitine levels are low.  You can be tested for your Free Carnitine and Total Carnitine levels.  Mine were deficient.
    • linda187
      linda187 jane95340

      Posted

      My TSH, Free T3, Free T4, antibody levels are all done by both my Family Doc and my Endocrinologist under the medical plan paid system.  However, my Free and Total Carnitines and Vitamin D have to be ordered by a doc but I have to pay for them and they are done in a lab that is different from my GP’s or Endo’s.
    • linda187
      linda187 jane95340

      Posted

      In Canada, all lab tests have to be ordered by a doc but some are not covered under the provincial health care plan so I would have to pay for them.  In the States, patients can order lab tests and pay for them privately.
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