[jeanette]

in reply to: just diagnosed in UK #1071266

Hi, Just a quick word to say I hope Cat’s thyroid scan was ok. I’m sorry you have ME, I think I read an article somewhere on the net which claimed that ME, rheumatoid arthritis, and Graves are linked to the same underlying autoimmune condition. But I’ve read so much recently and forgotten at least half of it that I may be wrong. I haven’t left the house for a few days now and am feeling stir crazy, but tiredness has prevented me from venturing out. Because of TED I had to give up driving cause of the double vision etc. and I live at the top of a hill (the bus stops at the bottom). So if I feel I can’t manage the hill I don’t go out. I’m getting plenty of rest though, and my son has kindly done some shopping for me. I’m guessing your life is pretty restricted too. I didn’t expect to feel this old at 50, or to sometimes sleep 16-18 hours out of 24 and still feel tired! I hope I can be offered some meds to change things a bit. Its nice in a way that you and Cat have each other for support, although of course it would be better if you both got suddenly well! If only life was that simple.
Take care for now
Jeanette

[jeanette]

in reply to: just diagnosed in UK #1071264

Hi W, catsmum,
Thank you for your reply. Sorry that your young daughter has this illness. I believe I have had it for a number of years, I’ve certainly had some of the symptoms for a long time. Everytime I visited the GP I was told my problems were GAD – General Anxiety Disorder. I saw various GPs during this time, but I think the general consensus was that it was all in my mind. Finally getting a diagnosis is a relief, but I really find it difficult to foster a good relationship with doctors. Except my endocrinologist, who Ive seen a couple of times. She sent me for thyroid scan and has told me my bloods are off the scale, but if she mentioned actual numbers I don’t remember. Memory and tiredness my worst problems. Ive had TED in one eye only for almost a year. It was my optician who noticed this and suggested a thyroid disorder. Thank goodness i went for eye exam!
My GP referred me to neurology, and I saw a neurologist two weeks ago. He arranged MRI scan for Tuesday 12th, but unfortunately I have had to cancel this, have another appointment in two weeks. I don’t plan to see GP meantime unless I absolutely have to, I will see opthalmology people in June too. If people tell me statistics or numerical data I am likely to forget it or not be able to make any sense of it anyway. So I guess the scan is the next step, and June isn’t that far away. Anyway thanks for listening and taking the time to correspond with me, it is much appreciated, your daughter is lucky to have a concerned mum on board. Take care, Jeanette

[jeanette]

in reply to: just diagnosed in UK #1071262

Thanks for all replies. I don’t understand why I haven’t been offered any treatment, don’t see endocrinology people until end of June. GP seems to waffle around subject and says won’t make any decisions until result of brain scan. Is this normal? TED affects only one eye, and has been giving me a lot of pain, ive looked for info on net and from what I see, I have had the symptoms for a number of years but always told it was depression and anxiety. Nice to have people to talk to about this.
Take care Jeanette X

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