Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Hi everyone! Does anyone know what treatments are pursued by docs in the UK for TED?? I am an ex-pat presently in the USA, I was diagnosed with TED in Dec 07, my eyes have (luckily) not swollen too much but back in April 08 I could not move my eyes properly because the muscles had swollen to such an extent and my eye doc here put me on a tapering down course of Prednisone, but only for 2 months. It worked wonderfully, all the swelling was dampened, and I looked near normal again, but once I was near the end of the 2 months and of course the dose was less, the swelling started to come back, but the muscle movement was much improved. However the eyes are now a little worse, my eye doc tells me they are protruding more each month! He is reluctant to prescribe Prednisone again, he worries about the side effects, I had to sign a lot of forms before he would prescribe it last time, but he is pushing radiation therapy. I was dx'd with Graves back in Aug 07 and like an idiot allowed myself to be pushed into RAI by the Endo here, had I had time to digest and read and research more I would not have gone down that road. I am sure I read somewhere (but can't remember where!) that treatment in the UK involved the use of steroids but over a longer period of time? Does anyone know if this is correct? Any input would be helpful, Thanks Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Hi Sheila, thankyou for your reply. I was initially diagnosed with overactive thyroid in Aug 07, I was never given any other options to consider as far as treatment went other than RAI. Between diagnosis and treatment was a matter of 5 short weeks and that included the scan etc to say it wasn't the viral type. Everything went well until Nov 07 when my eyes became puffy and swollen, went back to the Endo but nothing was made of it, told to sleep with head elevated and that was it. Saw an ophthalmologist on my own in Jan 08 who confirmed TED, prescribed eyedrops etc, which helped a lot. Then in Apr 08 he prescribed Prednisone because I wasn't moving my eyes as I should, this helped A LOT. Since then the eyes have been on a kind of roller coaster, some weeks good, others bad, then by Aug 08 they had been really good for a couple of weeks when I ended up in hospital beginning Sept 08 having an emergency cardio cath (angiogram), palpitations had come back with a vengeance but Endo said they were nothing to do with thyroid. Anyway, in hospital, had the procedure, had CT scan etc, all involving iodine being injected in as a contrast and then I was put on Warfarin again. My eyes were hot, scratchy all weekend and since then they have become worse as each week has passed. I have had double vision since Jan 08, only when I look down, luckily. I have a feeling now that maybe short courses of Prednisone are used throughout the active stage of this TED to alleviate some of the worse symptoms, I had one course in April that worked very, very well, perhaps I should persevere with my eye doc?? Thanks for your input Sheila, oh and by the way I've signed the petition. Regards Dee > > > > > > > > > > > > > > > > ._,___ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Hi Dee - I know this paper might seem a bit technical, but perhaps you would benefit by plodding through it all and see whether this helps you. It is indeed very comprehensive and it might give you some ideas http://www.pubmedcentral.nih.gov/pagerender.fcgi?artid=505652 & pageindex=2#page Let me know if it helps. What treatment are you taking for your Graves? Has your doctor talked to you about eye surgery to help your double vision if it should start to get worse? Luv - Sheila Hi Sheila, thankyou for your reply. I was initially diagnosed with overactive thyroid in Aug 07, I was never given any other options to consider as far as treatment went other than RAI. Between diagnosis and treatment was a matter of 5 short weeks and that included the scan etc to say it wasn't the viral type. Everything went well until Nov 07 when my eyes became puffy and swollen, went back to the Endo but nothing was made of it, told to sleep with head elevated and that was it. Saw an ophthalmologist on my own in Jan 08 who confirmed TED, prescribed eyedrops etc, which helped a lot. Then in Apr 08 he prescribed Prednisone because I wasn't moving my eyes as I should, this helped A LOT. Since then the eyes have been on a kind of roller coaster, some weeks good, others bad, then by Aug 08 they had been really good for a couple of weeks when I ended up in hospital beginning Sept 08 having an emergency cardio cath (angiogram), palpitations had come back with a vengeance but Endo said they were nothing to do with thyroid. Anyway, in hospital, had the procedure, had CT scan etc, all involving iodine being injected in as a contrast and then I was put on Warfarin again. My eyes were hot, scratchy all weekend and since then they have become worse as each week has passed. I have had double vision since Jan 08, only when I look down, luckily. I have a feeling now that maybe short courses of Prednisone are used throughout the active stage of this TED to alleviate some of the worse symptoms, I had one course in April that worked very, very well, perhaps I should persevere with my eye doc?? Thanks for your input Sheila, oh and by the way I've signed the petition. Regards Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2011 Report Share Posted May 24, 2011 My gp has referred me to the endo at Bolton. I have spoken to his secretary who told me that the ophthalmologist there is also excellent and specializes in TED. Looks like I may be on the right track at last. Thanks for everyones help and input. xxxx Lori.xxx The only doctors are know about are on the list that I sent you. Can you not get to Bolton where one of the good' endocrinologists works - or at least, telephone him to ask of his experience in Grave's disease? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2011 Report Share Posted May 25, 2011 Hi Lori - yes, that's the man (I have removed his name as we are not supposed to mention any doctors names on the forum to protect them - apart from Dr Skinner and Dr Peatfield (our medical advisors). A doctor should provide ALL your results together with the reference range for each test done. How can he tell whether the blood results are within the reference range or outside the range. I would telephone the surgery and tell them you need the reference range for each of these. Doctors are NOT allowed to withhold this information under the Freedom of Information Act. Don't allow these doctors or receptionists to pull the wool over your eyes. If they refuse to let you have them, then quietly tell them that you will ask the Primary Care Trust to speak to your doctor - that will probably change their mind. Will come back to you when you have got these. Luv - Sheila Hi Sheila It is Dr.R******* himself that I am seeing.I have asked for it be put on my notes as you suggested to be on the safe side. I have managed to get very sparse information of some of my results, although this doesnt include ranges. All I know is the last test showed TSH- less than 0.05 Free T3 9 Free T4 23 Apparently I am clinically euthyroid-I have no idea what that means.!! lol Any thoughts? Love Lori xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2011 Report Share Posted May 25, 2011 Hi Sheila Those results were taken from letters off the endo (that I was seeing until recently), to my GP. I see the new endo next week and will make sure I get full print outs with ref ranges. As I wont have any further info unitl after next weeks appt, I guess the figures I quoted will not be of any use without the ref ranges. Many thanks Lori xxx Hi Lori - yes, that's the man (I have removed his name as we are not supposed to mention any doctors names on the forum to protect them - apart from Dr Skinner and Dr Peatfield (our medical advisors). A doctor should provide ALL your results together with the reference range Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2011 Report Share Posted May 25, 2011 Your thyroid function test results (even without the reference range) shows that you are hyPERthyroid with both high free T4 and free T3 and suppressed TSH. What medication has your doctor been giving you in the past. Luv - Sheila Hi Sheila Those results were taken from letters off the endo (that I was seeing until recently), to my GP. I see the new endo next week and will make sure I get full print outs with ref ranges. As I wont have any further info unitl after next weeks appt, I guess the figures I quoted will not be of any use without the ref ranges. Many thanks Lori xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2011 Report Share Posted May 25, 2011 Hi Sheila I have been on carbimazole since July last year. 6 months on 40 mg daily, then 6 weeks on 20mg, then 4 weeks on 15mg, then back up to 20mg since Feb this year. Also 20mg propranolol twice daily. I also take flaxseed oil and selenium to help with TED. Many thanks Love Lori xxx Your thyroid function test results (even without the reference range) shows that you are hyPERthyroid Quote Link to comment Share on other sites More sharing options...
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