TED/ Graves Disease I'm new here

Hi there

Wonder if anyone can help..... I am under the hospital for TED , I had radio iodine treatment 12 years ago to knock my thyroid under active...... so I now have double vision , hair is falling out , was told my tsh was slightly high in gp blood tests, now just generally knackered etc as we are all used to, on 30mg of steroids which was great for the first six weeks but seems to be swinging the other way now and no periods for six months, and a really large glassy eye....I'm new to this site, does anyone have any advice as I am by myself with a child , a self-employed performer and getting deeper and deeper in debt as I can't complete the amount of work I need to for rent etc...... and don't seem to have the brain capacity to sort it? Where as I can normally sort anything.

12 Replies

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  • I am sorry you have TED and are suffering so much while carrying responsiblities. I'm sure everyone here will give you good suggestions. Do you have your latest blood test results? If so post them here along with the laboratory ranges and people can respond.

  • What are laboratory ranges? Where do I find them?

  • Thank you for your reply.

  • When you get a print out of your blood test results there will be a couple of numbers in brackets next to your result. Those are the laboratory ranges. They can vary between labs so it's important to include those ranges when you post results here so people can see what they are.

    You could look into supplementing with selenium. Has your doctor mentioned it? Here is a link to a recent research document. You could print it out and ask what he/she thinks.

    ncbi.nlm.nih.gov/pmc/articl...

  • Ok thanks... I haven't got a print out my last lot came over telephone. I had an appointment booked for weds but they have cancelled it and said I need to contact the eye a and e that I was under at the hospital as the dr said they can't do anything , and the endocrinologist said to see the go?

  • You are not being helped at all it would seem. Going from pillar to post.

    Always get a print-out of your blood test results with the ranges. If you are in the UK, we are permitted by the Law to have a copy.

    When you have a blood test for thyroid hormones, it has to be at the very earliest, fasting (you can drink water) and if you take thyroid hormone replacements you should allow 24 hours gap between dose and test and take afterwards.

    As you now have no thyroid function at all what dose of levothyroxine are you taking. My personal opinion and am not medically qualified is that if we've no thyroid gland at all a combination of T4/T3 might be more helpful than T4 only. T4 is inactive and converts to T3. T3 is the only Active hormone needed in all of our receptor cells and we have millions.

    Ask if your GP will do a Free T3 and Free T4 blood test and read on the following why - GPs don't know too much.

    thyroiduk.org.uk/tuk/testin...

  • Thank you. Yes I am in the U.K. I currently take 150mcg a day and am also currently on 30mcg prednisolone for the eye swelling, am trying to work but currently crashing and burning a bit which isn't usual for me, and my line of work is in the public eye, (performer) so as you can probably understand no energy and changing visually makes you want to run and hide. The drs just seem to pat you on the head don't they?

  • Grrrrr, I can't stand the patronising pat on the head, try different GP's in your practice until you find one that is interested in TED. It sounds so frustrating being passed from one dept to another. I would write to the Endocrinologist and copy the doctor into the letter and explain that each of them is instructing you to go and see the other and you are not getting the help you need and ask the Endocrinologist to give you a treatment plan to share with your GP so that everyone knows what part they are to play in resolving your current Eye problems and monitor it into the future. If you need a referral to an eye hospital then that should be included in the treatment plan I would have thought?? I hope someone else here with TED can give you some better advice than me.

  • Thank you so much for your help and advice.

  • Gp not go.

  • You might find this site helpful - it's written by someone who has Graves' Disease and it covers things like Thyroid Eye Disease :

    elaine-moore.com/Home/tabid...

    elaine-moore.com/Articles/G...

    There are articles, blog posts, a forum, ... You might find something helpful.

  • Thank you so much. I will take a look.

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