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Hypo to Hyper so confused, please help!

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kdw12
kdw12

I was diagnosed with hypothyroidism 20 years ago after I had my last child. I was prescribed levothyroxine 50mg. Which I have been on up until recently. My dose was only increased once to 75mg a couple years ago because my blood work came back that I was underactive. This past June I began having palpitations, heat intolerance, severe anxiety, fatigue etc. My doctor tells me that i am now Hyper tsh .01 so he says to decrease my levothyroxine to35 mg. Still no better after a couple weeks so he tells me to totally stop my med. It has been 41/2 wks since stopping levo. And my Hyper symptoms are slowly getting better. But I have NEVER been more confused as to why this is happening. The doctor tells me that I could have been over medicated (WHAT 20 YEARS LATER?and he said that maybe I didn't need to be treated all this time because I really didn't have Hypothyroidism, he said something else could have been causing my tsh to be a little high years ago and some people should just be watched instead of being medicated. Just want to add that my b12 is low, vitamin d low. And the fatigue has NEVER gone away. If anyone has been through this or can help me understand, I would appreciate it. Thank you

0 likes, 5 replies

5 Replies

  • sweetmelissa
    sweetmelissa kdw12

    Posted

    Yes.. that is true that some people should just be watched instead of being put on T4 replacement.  Some doctors are quick to give T4 meds if the TSH is on the higher end of the range instead of just waiting.  There are a couple of people in this group that have been put on T4 and found out they didn't actually ever even need it years later.  Also, I would like to point out that it is actually normal for T4 medicine to need adjustments, hence the repeat TSH blood work every 6 months to once a year.  There are a lot of different foods, vitamins and supplements that can effect the way our thyroid uses up and process's the T4 it needs.  They can also effect the way our thyroid uses T3 in our bodies, which can in return, effect the T4 and then the TSH levels.  Stress and excercise can also have an effect on our thyroid levels.  Iodine is another big one.  If your eating more table salt then usual, it can drive someone hyper.  So, as you can see, there many, many reasons why someone's TSH level's would change and need medication adjustments.  I would suggest to just keep watching your levels and get repeat blood work at least every 2 to 3 months to keep an eye on it, until it becomes stable again.

    • kdw12
      kdw12 sweetmelissa

      Posted

      Thank you for that interesting info. I also have been reading that gluten can really cause havoc on your thyroid as well, do you know anything about that? I am going to try eliminating gluten for a little while and see if that helps. It's so frustrating though that 20 years later and I become Hyper. All I know is that this is the worst I have ever felt with my thyroid. 5 weeks off Levothyroxine and heart is pounding on and off, eyes are dry and painful, severe fatigue, muscle weakness. Sorry to go on, just want to feel better. And I know members can relate.

  • AuntyJojo
    AuntyJojo kdw12

    Posted

    Same thing happened to me, now 55 years old, been on 100mg Leothyroxin almost 20 years, and regularly monitored every 6 months  I went to the docs for routine check and was diagnosed hyperthyroid, TSH measured 0.20 ml/UL, ( 6 months before it was 0.47)  Told to stop medication for 5 days then start on 50 mg.  All well after a month.  Was menopause the reason for the swing? New stressful job?
    • kdw12
      kdw12 AuntyJojo

      Posted

      I also wonder if maybe premenopause is causing my thyroid to go out of wack?! Another thing I have read is that gluten can do a number on your thyroid. I am going to try eating GF and see if that makes a difference. AuntyJojo did you have heart palpitations when you became Hyper? If so when did they go away?
    • AuntyJojo
      AuntyJojo kdw12

      Posted

      I've been gluten free for years so I know that's not the issue.  

      Yes I had heart palpitations when I was hyper, but that's gone now that medication is reduced.  

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