Day by Day
Hello everyone. Its so hard to deal with this and I don't know how others' have coped. You never know when you wake up how you are going to feel. There does not seem to be doctors here in the state of Missouri who know about Graves or TED. They are in the dark ages! Where are good doctors?
Replies
For your TED...the best doc to have is a board certified Ophthalmologist...not a Optometrist or Endo. Since you had RAI and are on hormone supplement...its recommended you stay in the upper half of your ranges to feel well and help your TED to start spontaneously healing. Selenium, Omega 3.6.9 and Evening Primrose will aid your body in healing both Graves and TED... you may want to get some. Hugs ellymae...I know its rough...TED really sucks...hang in there....Kathy
Hi ellymae,
I am new to TED too and the pain and irritation comes and goes. I am being sent to see an occuloplastic surgeon who specialises in TED, and if you can try and get someone similar. Its hard looking at our eyes in the mirror and seeing the redness, lines and feeling the burning and stinging, but hopefully as others here say, it doesnt last forever. Keep strong.
Jem x
Thank you both dairytech and Jemjems, I have been seen by an ophthalmologist for the last 2 years since the pain started in my eyes. He told me we all get puffy eyes and redness when we get older and asked me what am I doing to myself to cause this??? He juggled my glucoma eyedrops he put me on for elevated pressure right off and they have worstened, as I told him all along because of the TED, which finally after a ct scan he agreed that was it. Still on the drops with some allergy side effects and he is the one that recommemded an occuloplasti surgeon-of which I was under the impression that he was knowledgeable with Graves and TED and would try anything else first to help. Not. He wants to do orbital compression surgery and my eyes are in the congestive stage and I believe not stable but stilll active and changing. It cost $12,000.00 and I don\'t have that, I would have to try to get Medicaid. There could be other surgeries after that to correct other things, so I just dont want to do this. But I have lost some fiedl vision and he told me I could lose my vision if I did\'nt have the surgery. I don\'t know about that. Everyone is unique to this disease. I would like to know if anyone else has been told this. I had RAI131 in 2009 and problems ever since. I was hopeing my TED would go into remission but know it can take from a year to 10 years and don\'t think I can deal with it that long. Meantime, its back to square one and wait. I feel terrible every day. I wanted to try Armour but endo or reg. doctor will not comply. I can get it with out scrip from England but rather costly. Any ideas on this? thank youu again for replies. Kathy, I am taking Selenium, Vit. d, e, and B6 and 12. Did you have RAI? I believe you said you did. When you got the TED did you lose any vision or see blurry? Jem, do you have eye protrusion? Thanks again and take care, also.
TED just plain sucks!! After RAI, It\'s super, super important to keep your Free T4 in the upper part of the range and Free T3 in the middle to upper part of the range and the TSH supppressed. You do not want to fall hypo because it really makes things worse. I too had RAI and developed TED. Please find a ohpthalmologist who has experience treating TED. Good luck hun, it will get better, I promise.
Hi ellym,
Reading your post made me quite angry at these docs and eye specialists that you have been seeing. They dont seem to be very competent from what I have read. Are you in the UK or somewhere else? As jjbrookes mentions, please do try and find better TED specialists who really care about helping you with your TED and who take time to answer all of your questions and concerns, esp when you may be paying them.
Are you still in the active hot stage or cold? If you are in the hot stage were you offered steroid tablets or through IV if thats something both you and a doc would agree may help and willing to try? Dont rush into any surgery, get two or three different opinions from other TED specialists and surgery is only done when the eyes have settled and are in the cold stage and even then its best to wait 6 months or more. These are your eyes, so dont rush into anything esp if you dont feel comfortable. Do you have mild, moderate or severe TED and protrusion? Do you feel surgery would help you at some point?
I do have slight eye protrusion, but not many notice tbh as I have quite large eyes anyway. One eye has slightly moved outward, but again its not very noticeable, but then i havent had TED for very long, only around 6 months roughly. I also get the blurry vision, floaters, irritation like stinging, burning, redness like keratoconjunctivitis and lid swelling and itchy eyes, sometimes they water too. You never know what to expect with TED as each day brings something new. I dont have double vision and I hope it stays that way.
I dont like the sound of your opthamologist, I would definitely find a more experienced one, he doesnt really seem to know what he is doing by the sounds of things. I hope he isnt giving you steroid eye drops for long term use either and that you get regular check ups because the eye surface and corneas are very delicate and can be thinned, damaged easily by overuse of steroids and prone to ulcers, scarring and infections.
You mention some vision loss, have they done a scan and told you if your optic nerve is being compressed or damaged by TED and maybe thats why you need the ODecompression, or is your vision loss being caused by the glaucoma? You need to find this all out too before any further decisions.
Keep us updated. x
Thank you for your concern. I do hope your eyes are going to go to remission soon and yes, mine have been active for the last 8 months. I went to my appointment Friday and they told me she had left the clinic and had I been told. I said no. They called the day before to verify appoint. and noone said anything. So, I saw a reg. Md who goes only by the TSH again and asked if I could try Armour and he said no. So, I searched all day yesterday and finally found a doctor whom writes for Armour and his wife and daughter are on it and he looks at the full thryroid panel. Hope this is one that can help. I have to pay cash and it will take it all, but it will be so worth it if I can get help. I believe the Armour is the best for some persons and I hope I am one of them. As for the opthamologist, he is no longer involved in my care and I wish had never been. Told me I was a glucoma suspect on the fact that my eye pressure was high. Second time I saw him he put me on glucoma eyedrops-lumigan. Now I am on Travatan z and Alphagan P and dont want them but also want to control my pressure. Highest was 35 at one point, but my cornea lenses are thicker than normal so that is good. we deduct 6 points from reading. Last at other doctor in Kansas City it was 19 and 22 and I thought that was pretty good. I have some protrusion and some days its worst than others. My eyes are red and have pain in right one at night so that I cannot sleep untill I put a warm washcloth on my eyes and it subsides. They swell upper and bottom eyelids but not a hard but soft swelling which I dont understand. I have retraction on left mostly but notice it on right too. I have been treated for pink eye at first and then allergies. Even the endo I saw said it was allergies before she read the ct scan and its impression was muscle enlargement relating to Graves. Thats when they finally agreed that it was TED. I am going to try to find another eye doctor, but cannot at this time. I am hopeing if I can get Armour and suspect that I am still hypo that if medicine is right and dosage that my eyes may improve. I take levothyroxin now for 3 years and do not like the way I feel. My eyes are still changing so I believe I am in the hot stage although the surgeon said no, the congestive stage, Well, isnt that the active stage? I know they are not suppose to do surgery only in the stable stage, so why is he so in a rush? Only if it were an extreme emergency I believe. I havent any insurance and that is the deal. I would have to try to get Medicaid to do this. I dont want surgery. They make is sound like its no big deal, 2 hours and done. I have seen videos of the procedure and it looks like a big deal to me and persons whom have went through this I have read their comments. Ususally one surgery leads to another for a correction and I think I will pass. I am trying to focus on making my immune system healthier and first things first. Its just been a run around and no answers. Not one doctor I have seen has sat down and explained this disease to me. What I know I have learned from reputable websites, and reading books by other doctors and support groups like this. The eye doctor I had been seeing for the past 2 years asked me to find another eye doctor after I finally started asking him questions to which he didnt know the answers and that intimadated him. So, I left and should have sooner. He was concerned about the liabilities I am sure that he had not done a scan to actually determine if I had any optic nerve damage and would not believe me when I said I thought that I had TED. Said there isnt any relation between Graves and TED!!! That is what the endo told me here in the state of Missouri! The opthamologist comes to our small town once a week here and has an office near Kansas City, He comes here to treat persons and is supposed to be good at cateract surgery and glucoma. He is here for appro. 3 hours then goes to another town and back to his home base. He said he did not find optic nerve damage and recommended a scan the very last day I was there before he got nervous and asked me to go somewhere else. I feel like I have been going in circles for 3 years. But tomorrow may be a turning point, I just hope and pray. The glucoma eye drops that I use are only ones, except for Refresh for dryness. I havent used and steriod eye drops and know they are dangerous for prolonged usage. You\'d think before surgery doctor would want to do a scan to determine any nerve damage as you say, Only test I have had is field vision and dialation of eyes for exam. That doesnt make sense but he states I have nerve damage from field vision loss. Dont know. Anyway, getting tired and will continue tomorrow. Thanks again for listening.
Ellymae,
Here is a link to the Kellogs Eye Centre in Michigan, please email them and ask if they can send you any information on good TED specialists in your area and arrange an appointment by asking for the details:
http://www.kellogg.umich.edu/thyroid/faq.html
I would try and get that mri or cat scan for your optic nerves too. Let me know how you get on and whether the Kellogs institute help you find that TED specialist and even a good endocrinologist in your area too.
Jem. x
Thank you, Jemjems, very much. I will contact them and see what I can find out. In the meantime, today I went to my appointment with different in my area. He is from England and has been here for years and I hear he is a good doctor-caring and compassionate. He is MD. I went and he took one and half hour with me and I told him everything. He seemed interested and concerned. He prescribed Armour for me and I will start in am! I am so excited and he will treat my symptoms first and then look at labs. He does all the panel and he was wonderful! I feel I am on the right track. He was concerned about my eyes and is going to consult with a friend at a university in regard to. I think if I can get my hypo symtoms and right medicine and dosage then maybe my TED will go into remission. I am hopeful. Send prayers and I will keep you posted. Hope you are having a great day and things are good for you-one day at a time! Elly