Graves Disease and Thyriod Eye Disease

[elly157]

I was diagnoised with Graves' Disease in 2009. My TSH level was low and my t3 and t4 were high. I had all the symptoms of hyper. It was awful. They did an uptake and found abnormal findings. Was told I needed the RAI-131. Like a good patient I did this and was basically told my only other option was the anti-thyroid meds which could cause many problems and that scared me or surgery and so did that. So I took the radioactive iodine. My gut instinct told me no, but I did anyway. I have had nothing but problems ever since. I thought I was healthy before and never been in the hospital or any surgery. I was put on Levothyroxine 50 mcgs. More levels and my TSH was then high and others were low. Then med was increased to 75. I was feeling bad most of the time. Hypo and hyper symptoms. Still am. Levels have flexuated since, some within normal range, some not. Because I have no insurance I have had to go to free clinics. This has been a problem as I did not get to see the same doctor at times and had to relocate and start with another to get my medicine and levels done. I coped with this for a year and half and then started having eye problems. Pain in rt. eye and hurt and IOP was elevated. I first went to regular eye doctor who referred me to his friend, and opthalmologist. I was put on eye drops for the elevated IOP then with out any findings of glucoma but was told that I was a "suspect" for glucoma. No eye problems previously. Now- a year and half later and after a CT orbital I have enlarged muscles behind eye-mild to moderate and this is in relation to Graves' Disease. All along I kept telling the eye doctor that I believed I have Graves' Opthalmopathy. Swelling of the eyelids, protrusion of eyeballs, not bad, yet, but still obivious and lid retraction. I now look awful and my eyes are red, tearring constantly, and have a stare .Pressure behind the eyes makes it unbearable.  Doctor finally diagnosed GO, as I suspected earlier. He referred me to a surgeon whom specializes in this. I did not want surgery but to try all other options first. In the meantime, I left one endo because she lowered my dose of thyroid medicine from 100 to 88 mcg as she thought I was still hyper and wasnt even sure I had GD. Told her I was diagnoised by two doctors and get the reports. I started feeling worse with symptoms of hypo and hyper again. My levels done in a month and TSH went for .73 to 3.79 and T3 was .08 and t4 was 1.3 and she put me back up imedi. to 100 mcg. I am still on this dosage. Since her I have went to yet another clinic and started with an Internist. He exams me and does level and it is 1.41 TSH and t3 is 1.5 and T4 is 11.9! Stay on same dose. L evel again a few months later and only TSH as he states this is the only one needed. It is .8 now and I asked to be put on natural to try to get the t3 in body as I feel I am not converting t4 to t3 right. He says no, it is within normal range.  I feel shakey, anixious, depressed and then lately-again-sluggish and tired. I am ready to throw the towel in. It is a vicious circle with no end in sight. I have since quit the eye doctor as he was juggling my drops and my eyes hurt worst! and I could not afford his fees as I was trying to pay as I went.  Had me on Lumigan and I knew I had some problem with this and was brushed off. I take 2 drops now and saw a optrimist and he said Lumigan will cause reddnes and itching. I switched over to Travatan and Alphagan p now and my eye pressure still goes up and down. I believe that my eye problem is TED but due to my thyroid medication and not being adjusted properly. My doctor now is treating me for depression and nerves. I stated that I am emotional and upset but it is due to my health problems-if I could get this in line-I would not be upset!!! what a catch 22! So, now I am waiting to go see the surgeon doctor and do not want to do this but medical doctor says my vision is important and dont want to loose that! Well, I understand I need to get the IOP down to preserve my vision, but I dont understand why they cant see the link between the GD and the GO and if I can get my thyroid functions in order maybe the eyes would get better. The endo stated there is no relation between GD and optical diseases!! But I believe there is a relation between GD and TED! Auto immune disease and it is attacking my body. I wonder if the thyroid is even killed out and may still be trying to make hormones and that is why I am hyper yet? anyone have any opinions would be great and much appreciated! I am forced to apply for Medicaid as do not have the funds to go to specialist and I know that I cannot continue to work at any job with my health like this. In fact, I am running out of options and have tried so hard to do the right thing. Please HELP!!!

[elly157]

BTW, I wanted to add, how would one go about finding out if the thyroid is still active or not? would it be the anti-gens testing? and when they did the uptake scans on me I remember the tech telling me-no nodules and no enlargement. The one page report I have states -thyroid looks normal. I so wished I would have researched at the beginning. I was under a lot of stress at the time and I believe this triggered the Graves. I have had symptoms all my life just didnt know it was linked. One third of my eyebrows gone since teenager, orange peel skin on legs and now on arms, dry skin! and I was always up working! could not sit still!! wow.

[elly157]

BTW, I wanted to add, how would one go about finding out if the thyroid is still active or not? would it be the anti-gens testing? and when they did the uptake scans on me I remember the tech telling me-no nodules and no enlargement. The one page report I have states -thyroid looks normal. I so wished I would have researched at the beginning. I was under a lot of stress at the time and I believe this triggered the Graves. I have had symptoms all my life just didnt know it was linked. One third of my eyebrows gone since teenager, orange peel skin on legs and now on arms, dry skin! and I was always up working! could not sit still!! wow.

[elly157]

Thank you for your kind comments. I really do appreciate it. Yes, I do keep all my records and there are a lot as many doctors that are involved. I keep studying them to establish a pattern of some kind. I have read on the internet(reputable websites) and many books. Thank you for recommending the one you mentioned. I have read Elaine Moores' book on Graves Disease and she has some good information. Also "Thyroid Power" by Richard Shames and Karilee Shames, MDs and very good info. I am looking and reading everything. One day, after this is all over, I may write a book, hopefully! Unfortunately, it will never be over, but I am praying that I find some relief and help soon. You'd think as modern technology changes and so many doctors out there that a person could find one or two that would take the time to explain and have enough compassion to want to help and I know there are good doctors-I may have one on my side, but its been a long haul. Its so complicated and more to my story. I, too am beginning to wonder if my thyroid is not completely killed out or somehow, as you said, regenerated! I am thinking if so, that would be wonderful! Maybe I could get back to normal. Dont know. I am trying to obtain the one report that I dont have and that is when they did the RAI131 at a hospital and how much iodine was in that pill. I am thinking the doctor told me 11 of however it is measured. He said I will give you a little more and maybe that will bring it back to normal and you wont have to take medicine. 2 months later my TSH went from way low to high- and my t4 was low so they thought it was killed out and I was started on Levo. I have been reading on here about so many persons that have stopped taking Levo and feel much better, but I do know that is dangerous. I also read about the fillers of generic and switching to brand name Synthroid. There is something to this, I believe, as I did try brand name one month they gave me at clinic and did feel better, I told them this and they didnt have any more. One time they gave me Levo in 150 mcg tabs and told me to  cut them in half for my dosage. They werent scored and this was a mess! Reported back after my levels were once again screwie! So, I got meds from wal-mart after that. I may think about getting brand name again, and when I was on it for a month, for  total t4 was 11.9,-higher than it had ever been. But why they did not take free  is beon me. I understand the free t4 normal range  is 0.89-1.76 at my clinic, anyway. My doctor now only looks at the TSH and wouldnt do the t4 or t3, and I know this is not good. Anyway, thanks for you comments and look forward to many more!

[firefly7]

Oh I forgot to add, you may be having trouble because part of your thyroid has grown back or was never completely destroyed from the RAI.   Also the autoimmune process that drives Graves exists whether your thyroid is present or not, so people can have eye problems many years later even after the thyroid is completely gone.   I'm not an expert or anything, I just read a lot.  Again, wishing you luck.  

[firefly7]

What a situation you are in Elly!   Two things occur to me first.  If you don't already make sure you have hard copies of all your lab results in order and keep them in a binder together that you bring with you to the doctor.   Know it inside out and let them know you know it.   It'll help you to be convincing when you need to be to point out patterns and the like.   Also if you don't have a good overall thyroid book it would be good to get one.    The Complete Thyroid Book by Dr. Ain is good and respected by doctors - he has a very good chapter in there about the eye disease.   It might help you in communicating with your doctors to bring this book and point them to the relevant paragraphs - or it might offend their egos - but it is worth a shot.    Good luck to you - I hope you find someone who can help soon.