Hia I am new to this site and really don't know where to turn I was ill for along time before they found I was slightly overactive and had a multimodular goitre on closer inspection told it would turn nasty if I have radiation therapy I was on 5 mcg of carbizamole and levels were normal leading up to treatment, I then 2 months later went really under active my bloods were off the scale for 4 months and I was discharged from the hospital clinic without knowledge I was collapsing couldn't move and had a suspected stroke!!! Thank god not but just sooooooo under active my body couldn't cope. Then my eyes started going funny and only my appointment with a neurologist suggested that I had thyroid eye disease with me being discharged I had to try and get the endo to see me ASAP which as u all know is difficult and he blamed me coz I smoked but he never gave me any info about TED and then wanted to do IV steroids but was going to Devon on holiday which he criticised and gave me oral steroids instead which we're horrendous never felt so ill in all my life and I have been ill now for 10 years more so after radio iodine treatment he covered his back and I couldn't bear seeing him again coz he just didn't care and was rude and I couldn't take it any longer. I changed endos she was great to start with all big words and no help my eye doctor is amazing but it's getting worse I also have pre tibial myxedema due to the TED I'm on 300 mcg of thyroxine endo thinks I'm ok I'm far from it I can't even walk the dog without paying for it the next day I have no life really last letter from endo I ripped up in anger coz she said I was getting better!!!!!!!! I don't know what to do my son and husband are suffering too I ad to leave my job and now in severe debt please can someone help me my gp has said he doesn't know what to do with me the endo has dismissed me really no one has time for me is 300mcg a lot what if I'm on the wrong drug all they are going by is my tsh level 0.16 and free t4 19.5 this is year 3 since radio iodine and I'm no wiser to wot this means and have TED hypo and pre tibial myxedema now please can anyone help me x
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