Knowledge of under active thyroid

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Exactly a year ago I suffered from twitching. Started in forearm went to calf then the other then in every conceivable place.  

Seem 2 neurologists and had emg and have been told nothing to do with anything neurological.  Got blamed on thyroid.  

I have sat with GP and tried to talk to them about uat and what to do? How t self help - eg diet and exercise but just get told to take levothyroxine and this solves it. 

Please call me stupid - if this sounds stupid - but I am trying to understand what causes uat and also what does it mean.  For example one of the neuros said antibodies were high - gp said they werent. 

Just for information the following are results from blood test over the last 9 months. My Levo was increased in July 2017 

9th June 

Serum tsh level 5.18 mid/l 

Serum free t4 level 16.0

Thyroid anti body level 243

2nd August 

Serum tsh level 1.45 miu/l

Serum t4 level 18.2 

21st December 

Serum tsh level 1.59 miu/l

Serum t4 level 18.1

5th March 2018

Serum tsh level 1.92 miu/l

Serum t4 level 20.8

Since xmas I have been actively eating better - less meat and processed food - and exercising more 

I asked gp about the numbers rising and he said it’s fine and with in range and nothing to worry about. 

Can anyone give their opinion just so i have an idea what is happening and if you interpret results it would be great. 

Feels like when I go to docs it’s a case of take these pills and all will be fine - without an explanation 

They tell me to read things online but so much conflicting information regarding diet etc! 

Can Anyone offer some

Advice please!! 

Kind regards 


41 year old male 

Diagnosed in June 2015 

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6 Replies

  • Posted

    If this is your GP then they never think you have a problem I would trust your Nerologist opinion I have tremor /twtching issue I still am dealing with doctors You are definetly not stupid The Docs are They went to med school The Thyroid meds can really mess you up if that is not your problem From hat the Nero said about it being high You could have an autoimmune issue Either way A Rhumatoligist is what you need I'm so sorry your going this Your GP does not sound very helpful Again Please dont feel stupid I wish I had more answers

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    • Posted

      Thank you for message 

      Have you seen neurologist?  Since I had the emg done the twitching has really calmed so whether it was also a case of mind games I suppose will never know!! They are still happening but it’s getting easier to brush them off as the emg was fine.  Although other disease or conditions still worry me. 

      The situation is awful as the gp even refused a referral to endocrinologist- which was advised by neurologist. 

      All I want is an understanding of how it can be helped - appreciate it’s is unlikely to be cured.  However to just be told to take a pill and the symptoms will ease is that part that Is annoying.  

      Don’t even know what my serum t4 level means and why it’s rising!  

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  • Posted

    HI Kris,  unfortunately, everything you’re experiencing is pretty typical when dealing with thyroid disease. You aren’t alone. We’ve all experienced this. 

    First, read up on the side effects of any medications you’re taking. You’re likely to find some answers there. ALWAYS READ THE SIDE EFFECTS BEFORE TAKING MEDS. 

    There are a lot of posts here on levothyroxin from patients who find it does more harm than good. See the levothyroxin group. 

    You likely have adrenal burnout. This should be treated prior to thyroid medication, per prescription instructions. However, most patients are never tested or treated for adrenal exhaustion. 

    If you feel worse on the meds, find another solution and stop taking the meds that make you sick. Many thyroid patients find better relief through other avenues of treatment. 

    There is so much more, but these steps should be a good starting point for you. Feel free to ask more questions or send me a private message if you’d like some resources.

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  • Posted

    I found levothyroxin to be a placebo of sorts. It dies lower TSH and raise thyroxin levels, but does not resolve hypothyroid symptoms and causes many side effects. I became horribly ill from the levothyroxin.
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    • Posted


      Thank you 

      It’s funny  it feels like I am at stage of not even knowing what’s normal!!! 

      I have received a letter today to confirm they are going to scan my thyroid and also an mri on pituitary gland. (These have all been arranged by neurologist) 

      You are right though I am going to look at alternatives. Collating all of my blood test and going to check changes etc and then go from there 

      Thank you for your messages though!


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