Diagnosis for people without Hashimotos

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I recently saw an endocrinologist after 8 years of feeling tired and rubbish on levothyroixine. One of his suggestions was that I may have been put on the medication without actually having hypothyroidism in the first place.

I know I don't have Hashimotos and had my antibodies tested to find this out (this happened also when I was diagnosed). My medical notes state that my hypothyroidism was caused by iodine deficiency.

My question is - is there a definitive test to show that this was the cause? Is it just the TSH and T4 levels that they test?

The endo is thinking about putting me back on levo alone and just reducing it gradually until they reach the right dose. I don't really think I'm over-replaced and I think it is just the levo medication that has no effect on me rather than not needing it at all.

I'm going back to see this guy next week and wondered whether there were any tests he can do before just assuming that I never needed it in the first place!!

Your help as always is greatly appreciated!

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  • Posted

    Hello Sayhitocaz:

    My name is Shellyand I have Hashimoto's and I am a nurse in the USA.

    TPOA for short is Thyroid protein antibody test and is used to diagnose Hashimoto's.  If the antibodies are in you it will show a number and is pretty much one way of telling.

    ESR test, is erthrocyte sedimentation rate and it can put up autoimmune  and is a good indicator of the immune system and if inflammation is present.

    T4 and T3 should be done and TSH.  If you are in UK, it may be hard to get them to do T3.  Also a good idea to look for any cortisol and ask for a cortisol level.

    Someof us with thyroid issues have cortisol levels go up. Also a mineral panel to include, sodium, calcium, potassium,  magnesium, zinc, ferritin, iron and Vit D and B-12 levels.

    If Levo bothers you ask for NDT (Armour Thyroid) or Thyrolar (which is a T4 and T3 combo med). you could also ask for T3  cytomel or Liothyronine  and a small dose of Levo.

    There are other meds out there, you don't have to just rely on Levo.

    Keep us posted on how it goes.



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    • Posted

      Hi hun thanks for the reply and sorry for the delay I've been exhausted this week smile

      Thanks for the advice I hadn't heard of the ESR test and I've just had the Tpo done and waiting for the results.

      Also had all of the minerals done which camr back normal. My cortisol (random test) was twice as high as the "normal" range so I'm going to the hospital mid January and been told to request the dexamethasone suppression test (I believe you take a tablet the night before and then tested the next day at a specific time to improve the accuracy and meaning of the test). I think cortisol may be the red flag here - am interested to see how this goes.

      Since I posted this, I have been refused NDT (and I imagine any other new med) for the foreseeable as they belive due the fact I don't have hashimotos they think I may have been misdiagnosed so spending Christmas and most of the new year I imagine, coming off the meds and seeing what happens. Must admit I'm terrified at this prospect, but luckily my work have been great and trying to sort me out a laptop to work from home to ease the pressure a bit and so I can sleep on my lunch break!!! Xx

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    • Posted

      Hello Caz:

      I had the Dexa test done on me years ago.  There is linkage to adrenal  gland problems and thyroid disease.  The Dexamethasone is a tablet and it is a high dose and it shuts off the adrenal gland and then they time it and draw blood.  If you are admitted to the hospital it is better otherwise you have to hang around and have blood drawn at certain intervals.

      Well, if your thyroid disease  diagnosis was in error you got the best Christmas gift ever!  So keep us posted on how you do and what happens.

      XO Shelly

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    • Posted

      Oh I didn't realise it shuts that off completely. Yes there are so many various aspects that are Linked with the thyroid so trying to rule everything out and hopefully get on the road to recovery!!

      Yes would be all my dreams come true smile

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