Don't know what to do?

Just wondered if anyone out there could help.

Diagnosed with m.e. 8 years ago, pernicious anaemia last september, and recently a multinodular diffuse goitre. My TSH has finally gone to 5.5, lab wouldn't test T3, t4. Doctor gave me 50 mcgs levothyroxine, felt fine for two weeks then crashed, extremely tired and bad heart palpitations, reduced dose to 25mcgs but still couldn't cope with palpitations so stopped thyroxine. Not sure what to do next, am very drug sensitive, private tests? Make appointment with Dr Peatfield? Any advice most welcome Liz x

8 Replies

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  • You may have to start with 25mcgs on alternate days. 50mcgs is too large a dose for many of us.

    Ask your doc to test free t4 next time, You may have been hypothyroid for some years as many people are diagnosed with m.e/cfs in error as docs go by blood test results.

    Have you had guidance on how to take meds and what to avoid?

  • Also diagnosed in fibro/me /cfs spectrum last year.....appointment with Dr Peatfield 2 weeks ago and now awaiting test results.....was quite hopeful of health after reading his book on the thyroid.......I'm drug sensitive too...keep chin up!

    dogtired

  • Hi I was also diagnosed wiht ME over 6yrs ago (- it's a hard road you tread) I have an underactive thyroid gland and some low adrenal plus low vitamin D. With all these treatment in place I feel the best I have felt for 8yrs. I found despite best afforts that levthyroxine did not work for me -infact my system was intolerant of it -so under the care of Dr Peatfield switched to Armour +some adrenal support. I felt so much better (no more palpitations or other horrid symptoms) -another doctor noticed I was low in Vit D -& addressing that has made a tremendous improvement to my energy -so can recommend Dr Peatfield -& be wary of people who assume all your symtoms are ME -it could be other things. I tolerated so many symptoms and poor health because the docs said -oh its ME -and never investigated further to check..... Hope this helps

  • Thanks Suze,

    I think I have been hypo... for some time, but TSH always fell within their 'range'

    Have had advice on taking meds, iron etc.

    Rod has advised me that this question is in the wrong place so will be deleting it soon.

    Thanks for your help, Liz x

  • Thanks for the encouragement dogtired, am going to make an appointment to see Dr Peatfield as soon as possible.

    I have been advised by Rod that i have posted this in the wrong place so shall be deleting it soon.

    Thanks again for encouragement, Liz x

  • Wavylines, thank you for your response. I have decided to make an appointment with Dr Peatfield as I don't think I will get far on the NHS.

    Rod has informed me that i have posted this in the wrong place so will have to delete it soon.

    Once again thanks for nyour info, Liz x

  • This is a good Q can't you move it rather than delete? Please see my Q on other auto immune diseases.

  • i also have pernicious anemia, fibromyalgia and thyroid issues. On thyroid uk main page is a section which is labelled fibromyalgia but also applies to CFS. It says there about adrenal glands not working its possibly your thyroid med is being counteracted by adrenalk function or lack of. I would show your GP this info and ask thier opinion or ask for a referral to an endocrinologist.

    Hope this helps i am a nurse.

    Louise

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