new to all this so please bear with me:)

been unwell for 3 years, not 'me' no energy, permanently tired - fobbed off by Drs; went back in April, thyroid anti -bodies positive but said my body was coping (was it heck) so did nothing. back in July as eyeball protruding, dr said it wasn't, it was the bags under my eyes pulling the lower lid away!! referred for cosmetic surgery, no urgency naturally, appt in Nov, MRI confirmed TED, now seeing Endocrinologist in Jan but, I don't understand all these levels, can any one advise me please what I need to know, what I should be asking, I want to be prepared this time as it's gone on long enough

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  • The first thing you need to do is get a print out from your doctor of your blood tests with results and ranges. I have learnt that it is vital to always ask for all results of all tests. Magically your GP stops hiding behind telling you things are alright when they obviously aren't (personal experience). Also, it will help you monitor your treatment after you've seen the endo and help you monitor changes. You can also see if all the correct tests have been done.

    Before seeing the endo, and if they haven't already been done, it might be worth asking for your Vit B12, Vit D, iron, folate and ferritin levels to be measured.

    If the endo refuses to help you, come back here and post your results with ranges. Members here will point you in the right direction. Hopefully your endo will set you on the right path, though.

  • thanks Rosetrees, :) will ask Dr for the last bloods results on Monday

    Endo has requested another blood test, asking for B12, UEs, LFT, TTG, FPGL,FER, TSH, FBC2, T4, CORT, THAB, B

    I'm hoping as he has requested that lot that he is 'on the ball' ?

    I've had to take iron for years 400mg a day as my body doesn't store any excess iron apparently

  • thanks for that Heloise, now worked out what most of the tests are for :) the only ones I couldn't find were the CORT UEs and FPGL

  • Hi cat, I'm not sure what those are either but perhaps it is described in this list. If not, you could Google each one separately. Hope you tested well or they find out what is wrong.

  • Ffff

  • Hey there catalonia,

    I am sorry to read about your terrible predicament - particularly the fact that you feel as though your doctors have not been listening to you.

    Have you considered having treatment abroad? you could get treatment in countries like Poland, Turkey, The UAE, and Thailand with for a percentage of the price of going private in the UK, and there are virtually no waiting times.

    Just wanted to let you know that there are other options out there rather than having to put up with the ordeal you have :)

    Hope it helps!

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