Guest guest Posted May 22, 2011 Report Share Posted May 22, 2011 Hi, Just wondered if anyone else has thyroid eye disease and can offer any advice on how they deal with it please. I have seen the orthoptist who said I cant have prisms as my double vision is not constant. I cant drive at the moment and even as a passenger, the family days out which I used to enjoy so much, have now become a chore. Im still quite new to all this and would really welcome and appreciate someone who is going through a similar thing to talk to. Thank you for reading this. Lori xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2011 Report Share Posted May 22, 2011 Hello Lorraine, what was the result of your last TPO and TgAb antibody test? Are you eating gluten. If so, you need to give this up as thyroid antibodies thrive on gluten and the more antibodies you are producing the more damage you will be doing to your thyroid tissue and the tissue behind your eyes. Luv - Sheila Just wondered if anyone else has thyroid eye disease and can offer any advice on how they deal with it please. I have seen the orthoptist who said I cant have prisms as my double vision is not constant. I cant drive at the moment and even as a passenger, the family days out which I used to enjoy so much, have now become a chore. Im still quite new to all this and would really welcome and appreciate someone who is going through a similar thing to talk to. Thank you for reading this. Lori xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2011 Report Share Posted May 22, 2011 Hi Sheila Thanks for you reply. Unfortunately, I have no idea what any of my results are .I last saw my endo in February and am not due to see him again until 30th June.I will try to get a print out of my results then He did up my carbimazole last time as he said my levels were not coming down as quickly as he would like. I have been on meds since July last year. He did say he wanted to see me again in 6 weeks but the first available appt wasnt until the end of June. I can cope with the thyroid problems on their own but its the TED that I am struggling to cope with. I dont eat bread cakes biscuits processed foods etc. My ophthalmologist (who doesnt specialise in TED) says theres nothing that can be done at the moment but wants to see me again in 4 months. I just have to keep using the eye drops. I cant have prisms because the double vision is only when I look up or to the extreme left and right. I just really would like to hear of others with TED who understand how I feel and may be able to offer help and advice or pass on the name of good NHS ophthalmologists in my area. (Blackpool) Many thanks. Lori. x Hello Lorraine, what was the result of your last TPO and TgAb antibody test? Are you eating gluten. If so, you need to give this up as thyroid antibodies thrive on gluten Just wondered if anyone else has thyroid eye disease and can offer any advice on how they deal with it please. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2011 Report Share Posted May 23, 2011 Hi Sheila I have just spoken to my endo's secretary and tried to find out my results but she was adamant that they NEVER give the results to patients . She will send them to my gp and I can request them from her. I explained that I have been seeing the endo since July last year and have never been told any of my results, only that the levels are not coming down as they would like. I also explained that when I saw the ophthalmologist, I was asked what my levels are and I couldnt answer. She said that the ophthalmologist should have had my results and if not, they could have requested them. I did say it was my right to have my results but she wouldnt budge. At least she will send them to my gp and I will make an appt with her. Grrrr. Its all so frustrating. I am still looking for a good endo near to me but the nearest on the list is still about 50 miles away. If anyone reading this knows of one any nearer, I would be so grateful. Thank you for reading this. Lori. x Hello Lorraine, what was the result of your last TPO and TgAb antibody test? Luv - Sheila Just wondered if anyone else has thyroid eye disease and can offer any advice on how they deal with it please. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2011 Report Share Posted May 23, 2011 where are you based? chris > I am still looking for a good endo near to me but the nearest on the list is still about 50 miles away. If anyone reading this knows of one any nearer, I would be so grateful. Thank you for reading this.  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2011 Report Share Posted May 23, 2011 Hi Chris Thanks for replying. Im in Blackpool. Lancs. Lori. x where are you based?chris>I am still looking for a good endo near to me but the nearest on the list is still about 50 miles away. If anyone reading this knows of one any nearer, I would be so grateful. Thank you for reading this.  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2011 Report Share Posted May 23, 2011 She is wriggling out of this obviously, and passing the responsibility on to your GP - though this ruling applies to ALL NHS doctors so your endocrinologist cannot withhold these documents from you either. An Endocrinologists secretary should know this and stop wasting time and money by passing your results on elsewhere. Show her http://www.nhsmedicalrecords.org.uk. I think you forgot to mention in your previous email that you live in Blackpool, in case anybody knows of an excellent endocrinologist who knows what he is talking about with Grave's Disease. Luv - Sheila Hi Sheila I have just spoken to my endo's secretary and tried to find out my results but she was adamant that they NEVER give the results to patients . She will send them to my gp and I can request them from her. I explained that I have been seeing the endo since July last year and have never been told any of my results, only that the levels are not coming down as they would like. I also explained that when I saw the ophthalmologist, I was asked what my levels are and I couldnt answer. She said that the ophthalmologist should have had my results and if not, they could have requested them. I did say it was my right to have my results but she wouldnt budge. At least she will send them to my gp and I will make an appt with her. Grrrr. Its all so frustrating. I am still looking for a good endo near to me but the nearest on the list is still about 50 miles away. If anyone reading this knows of one any nearer, I would be so grateful. Thank you for reading this. Lori. x Hello Lorraine, what was the result of your last TPO and TgAb antibody test? Luv - Sheila Just wondered if anyone else has thyroid eye disease and can offer any advice on how they deal with it please. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2011 Report Share Posted May 23, 2011 Hi Lorraine, Have come across the following on another forum, which claims that treating TED with Selenium is proven to be effective..... _____________________________________________________________ The American Thyroid Association's newsletter today had this interesting article. Selenium beneficial in mild Graves' orbitopathy Marcocci C. N Engl J Med. 2011;364:1920-1931. Six months of treatment with selenium improved the course of disease and quality of life in patients with mild Graves' orbitopathy, according to results of a new study. Compared with placebo, patients with mild Graves' orbitopathy demonstrated significant improvement in self-reported quality of life measures (P<.001), less eye involvement (P=.001) and a slower progression of Graves' orbitopathy (P=.001) after receiving selenium treatment for 6 months. The European Group of Graves' Orbitopathy reported the results of the multicenter, randomized, double blind, placebo-controlled clinical trial in The New England Journal of Medicine. The study compared twice-daily treatment with the antioxidant agent selenium (100 mcg), the anti-inflammatory agent pentoxifylline (600 mg; Trental, Sanofi-Aventis) and placebo in 159 patients who had mild Graves' orbitopathy. Treatment lasted 6 months, and patients were followed for 6 months thereafter. " The beneficial effect of selenium on quality of life was corroborated by a significantly better ophthalmic outcome, as compared with placebo, at the end of the 6-month treatment period, " the researchers wrote in the study. The clinical activity score decreased in all groups, with the greatest change in the selenium group. The clinical activity score consisted of seven items: swelling of the eyelids; spontaneous retrobulbar pain; conjunctival redness; eyelid redness; pain on attempted eye movements; chemosis; and swelling of the caruncle. Sixty-one percent of patients in the selenium group experienced improvement in their Graves' orbitopathy, primarily related to amelioration of soft-tissue changes and a decrease in eyelid aperture, compared with 35% of the pentoxifylline group and 36% of the placebo group. Graves' orbitopathy worsened in 7% of the selenium group, 10% of the pentoxifylline group and 26% of the placebo group. " Thus, as compared with placebo, selenium was associated with an increased rate of improvement but also with a decreased rate of worsening, " the researchers wrote. " Except for a transient benefit with respect to soft-tissue changes at 6 months, the outcomes with pentoxifylline did not differ significantly from those seen with placebo. " In addition, quality-of-life measures did not change significantly in the pentoxifylline or placebo groups. Evaluation at 12 months confirmed the results observed at 6 months, according to the researchers. Two patients in the placebo group and one in the pentoxifylline group required immunosuppressive therapy for deterioration of their Graves' orbitopathy. The researchers observed no drug-related adverse events associated with selenium or placebo. However, skin and gastrointestinal disorders were reported with pentoxifylline. " We speculate that an intervention aimed at improving the antioxidant-oxidant balance might be helpful in both hyperthyroidism and Graves' orbitopathy, " the researchers wrote. www.endocrinetoday.com/view... > Just wondered if anyone else has thyroid eye disease and can offer any advice on how they deal with it please. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2011 Report Share Posted May 23, 2011 Hi , Thank you very much for the info. Hubby is out at the shops so I have phoned him and asked him to pick me some selenium up. I will keep you posted on how I get on with it. Many thanks Lori xxx From: Galathea <galathea@...>Subject: Re: Thyroid eye diseasethyroid treatment Date: Monday, 23 May, 2011, 2:46 Hi Lorraine,Have come across the following on another forum, which claims that treating TED with Selenium is proven to be effective.....__________________________________________________________The American Thyroid Association's newsletter today had this interesting article.Selenium beneficial in mild Graves' orbitopathyMarcocci C. N Engl J Med. 2011;364:1920-1931.Six months of treatment with selenium improved the course of disease and quality of life in patients with mild Graves' orbitopathy, according to results of a new study.Compared with placebo, patients with mild Graves' orbitopathy demonstrated significant improvement in self-reported quality of life measures (P<.001), less eye involvement (P=.001) and a slower progression of Graves' orbitopathy (P=.001) after receiving selenium treatment for 6 months> Just wondered if anyone else has thyroid eye disease and can offer any advice on how they deal with it please. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2011 Report Share Posted May 23, 2011 Hi Sheila Thanks for your help and the link. I may have found an ophthalmologist who specializes in TED in Manchester. I will ask my gp to refer me to them when I see her this week. I have one or two links to follow up for an endo but would still welcome any recommendations for any not too far from Blackpool. Thanks once again Lori xxxx She is wriggling out of this obviously, and passing the responsibility on to your GP - though this ruling applies to ALL NHS doctors so your endocrinologist cannot withhold these documents from you either. Luv - Sheila Hi Sheila I have just spoken to my endo's secretary and tried to find out my results but she was adamant that they NEVER give the results to patients . She will send them to my gp and I can request them from her. Lori. x Hello Lorraine, what was the result of your last TPO and TgAb antibody test? Luv - Sheila Just wondered if anyone else has thyroid eye disease and can offer any advice on how they deal with it please. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2011 Report Share Posted May 23, 2011 i hope you find someone to help you sorry i don't know of anyone up there, hope someone can help you find someone chris > > Hi Chris > Thanks for replying. Im in Blackpool. Lancs. > Lori. x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2011 Report Share Posted May 23, 2011 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? Lori - please can you remember to delete the previous messages and just leave a few lines of what you are responding to. Luv - Sheila Hi Sheila Thanks for your help and the link. I may have found an ophthalmologist who specializes in TED in Manchester. I will ask my gp to refer me to them when I see her this week. I have one or two links to follow up for an endo but would still welcome any recommendations for any not too far from Blackpool. Thanks once again Lori 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 - be absolutely certain that you ONLY see the endocrinologist you have chosen. At outpatients clinics, the appointments clerk will often make you an appointment with whichever endocrinologist/senior registrar is available on that day. I would telephone the Outpatients Clinic and tell them you do not want an appointment with any other doctor, and that you will only attend the clinics run by your endocrinologist. Ask that a note to this effect be placed into your medical notes. This is what I arranged on my own behalf, because the other endocrinologists at the hospital I go to are pretty rubbish. Better to be safe than sorry. Luv - Sheila 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 Sheila It is Dr. 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 Hi Lori - be absolutely certain that you ONLY see the endocrinologist you have chosen. Luv - Sheila Quote Link to comment Share on other sites More sharing options...
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