Thyroid Eye Disease

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I was diagnosed with Graves disease December 2014. It started in June when vision stated to get blurry. I went to my opthalmologist who gave me a new prescription for glasses. Teo months of wearing the new glasses my vision continured to get worse. I started noticing trembling in my hands, my shins would cramp and I would sweat profusely. Since my diagnoses I ve been on medication and everything seems to have improved except for my vision. I get he swelling and runny eyes at night. I'm constantly wiping and using eye drops to help with the dryness. My job is to be on the compter all day and most days I struggle tremendously trying to see whats on my computer screen. Some days I sit at my desk and do nothing because I cannot see anything. I had a break down last week where I just sat at my desk crying because of how bad my vision is. I've had steroid pulse treatment that did nothing but make me gain alot of weight. This disease has been life altering for me. I've been dealing with the blurred vision for almost a year. Is there anything else I can do to help with this.

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  • Posted

    've got blurred vision too and it hasn't improved.  I find it's worse when I'm tired.  I don't think much can be done. 
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    • Posted

      My doctor keeps telling me that I need to ride out the storm. In the meantime my job is on the line because I cant see clearly. I'm very depreesed at this point.  Not sure what to do.
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  • Posted

    Sorry you are struggling so.  I also started out with eye involvement and also after heavy computer work.  My problem was worsening of double vision, and it was a neuro-Ophthalmologist who diagnosed the GD.

    As I understand it, the only connection between Thyroid Eye Disease and the thyroid is the Auto-immune involvement.  It is the same antibodies that attack the proteins surrounding the eyes that also attack the thyroid to increase thyroid hormones.  That means that getting the hormones under control will not necessarily help the eye problem.  The only way to fix it is to stop the autoimmune attack, which is something the doctors don't know how to do.

    My problem is really different from yours, because I don't have the typical TED.  Most patients develope bulging eyeballs which causes the excessive dryness.  Even though I had to deal with dryness for a time, my eyes never got so bad they wouldn't shut completely.

    One other difficulty is in getting the TSH to return to normal even after the thyroid hormones are within the normal range.  Perhaps using L-Carnetine, or the more potent version, Acetyl-L-Carnetine would help with that.

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  • Posted

    Hi Michelle,   I'd like to suggest you get some good immune system vitamin / mineral support tablets, as the GD will have reduced or wiped out what much of this, and this will allow your body to continue to recover.   I've also read several articles that talk about magnesium being vitally important and blurry vision is linked to magnesium deficiency.  You really can't have too much magnesium. Stress, high blood pressure, fatigue, muscle cramps, feeling irritable, heart palpitations,  feeling on edge, bad sleeping, are all also symptoms of deficiency in this mineral.   Best wishes X  
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  • Posted

    Hi Friends. From last one and half year i have grave disease 

    (Hyperthyrodisim) and exophthalmos.  i have been taking carbimazole 30mg per day then after two month reduce to 20mg per day . then i did tsh and freet4 test. my test was normal . then doctor reduce carbimazolw  5mg per day. after two month i did TSH and FreeT4 test t, it showed that my TSH and FreeT4 again rise due to decrease dose of carbimazole.  now doctor adivised me to RAI(Radio active iodine theropy) as i have already bulging eye (Proptosis). Also i have visited eye doctor . he prescribe to me natural tears drops for dryness but still bulging of eyes is there. will RAI decrease my eyes swelling or not. please friend guide me regarding this.i feel very nervous and fade up from bulging eyes.


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    • Posted

      I would refuse RAI particularly with the eyes being affected.  I was told that studies (maybe 5-8 years ago) showed that RAI made the eye conditions worse.  

      It seems like your doctor did not reduce your medicine in a careful way, maybe not enough early on, or slowly enough, at least toward the end.  In my experience, I also was told to start with 30 then after 1 month reduce to 20, see him in 2 months after a second blood test.  

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    • Posted

      Thanks Fern for reply.

      my TSH increase and decrease with use of carbimazole. whesn i use tablet its normal then when i left tablet then again it increase..

      more i am very upset to my eyes swelling...

      i have used seleniium as well but still swelling is there.


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    • Posted

      I have not had to use any ATD [anti-thyroid drug] for about 2 years and did not have RAI or surgery to remove my thyroid.  I have been in the normal range for TSH, Free T4, and Free T3 most of the time.

      I was first diagnosed with GD [Graves' Disease] in 2009 after a TSH test in July 2008 which showed I was hyperthyroid.  That test was done by my OB/Gyn and I was sent to my PCP for further testing which showed  my TSH below 1 [distinctly hyperthyroid] and my FT4 at just 0.1 above the upper border of the normal range.  The PCP sent me a letter telling me the results with a note telling me to see him again after 3 months.  The note was highlighted, but I was having a lot of brain confusion and I thought it was crossed through, so I did not go back right away.

      I had childhood strabismus [double vision] since I was a teenager [in the 1960's.] When it suddenly got worse in December 2008 I was sent to an eye specialist.  I saw him early in 2009 and he diagnosed me with GD, but I didn't have the Proptosis.  Still he associated my pro blem with the GD.

      After putting me on Methimazole [much like Carbimazole,] Endo #1 gave me the same schedule of reducing from 30 to 20 but after a month and to see him in 2.  So that was 2 pills morning and night.  He gradually reduced my ATD to 2 pills per day by Spring 2010.  I was suffering from Hypothyroid symptoms but he would not reduce the dosage any more, so I stopped the meds on my own by summer. After a pleasant summer, the pressure was on me to return to an Endocrinologist.

      In the Fall of 2010, Endo #2 started me out slowly with one pill per day but my hypo symptoms returned.  He increased the dosage to two per day saying that my numbers were not going back to normal fast enough.

      Early in 2012, I felt very strange, like I was walking funny but did not know why.  I stepped of the curb to cross a street but fell flat on my face.  As I fell and immediately my arms went out to catch me, I thought "no, my arms will break," and I dropped them to my sides again while trying to curl up like a ball instead.  That happened a day or two after my thyroid tests were drawn and before I saw the Endo.  When I saw him with my face all scratched up, he asked what happened and if there was a reason I slipped.   I reminded him that my brain was all foggy from the ATD and it was what caused my fall.  He reluctantly reduced my meds by 0.5 pill per week, saying I would probably go hyper again.  I improved quite a bit with my TSH going a lot closer to the  normal range.  I asked him to lower my meds again, reminding him that he had promised to let me have my thyroid be at the upper part of the range.  He let me reduce my meds by another half a pill per week, warning me again that I would probably go hyper.  Two months later my tests showed me completely in the normal range with my TSH tending towards the Hypo side, he reduced my meds again.  After that, when he would not reduce the meds any more, I took it on myself to reduce my own meds on a very slow schedule like that.  I would reduce my meds right after the appointment and then keep them steady until the next blood draw, telling the doctor what I had done when I saw him next.  My numbers were always good so he never complained.  In December 2012, I was off the ATD entirely, with the doctor's approval.  I still had symptoms of hypothyroid and my FT3 was quite low being barely inside the normal range, but he would not prescribe a supplemental thyroid pill.

      In 2013 I went to another Endo for a second opinion.  She was out of state, but gave me a letter to show my PCP the results of my test and to authorize him to run the later tests as needed.  She would not prescribe anything for me either, saying she thought  giving me the smallest pro-thyroid pill would make me hyper again. 

      I returned to Endo #2, but he refused to see me when he found out I had been elsewhere for a second opinion.  I went to my [new] PCP instead.  He agreed with me when I said I felt like I was walking a tightrope with Hyperthyroid antibodies on one side and Hypothyroid antibodies on the other, and I thought I was in the best position to keep myself stable, rather than have a doctor trying to do it by remote control.  [I had learned from Endo #3 that I had both kinds of antibodies.]

      Then my PCP prescribed Cytomel [T3 supplement] with instructions not to exceed two 5mcg tablets per day.  I started with half a tablet.  It increased my resting heart rate to 93 bpm, so I waited about three days to take any more, knowing the half-life was 24 hours, I think.  Then, I cut the pill into quarters and took one every few days when I thought I was a little down.  Eventually, I learned that I could lay a quarter pill on its side and cut it again to reduce it to an eighth.  I was taking that size once a day for a while, then increasing gradually while my blood tests showed me well into the normal range.  My doctor added a low dose of Levothyroxine when I was still having trouble with 1.25 of Cytomel.  In December 2013, the next test, showed me to be hyper again, so I was told to stop the supplements and see another Endo.

      In 2014, Endo #4 let me stop the Levothyroxine and decrease the Cytomel gradually until I was off it also.  I began suffering with the hypo symptoms again, but there was nothing I could do about it.  My PCP suggested I was depressed.  I had taken 3 different kinds of SSRI before [years ago] but didn't respond well to any of them, so I didn't want to try again.  My doctor looked me in the eye with a glint in his own, and said this was a different kind and was one that would particularly help me with the symptoms I was having.  He prescribed Wellbutrin.  At taking the first pill, all of my symptoms went away.  I had a surge of energy, my brain was no longer foggy, I was no longer freezing cold in a warm house with blankets around me, etc.  I felt normal.

      My thyroid tests remained normal, except my FT4 last July was a bit high.  I was told to get another round of tests in two months.  They also tested the antibodies again at that time.  I did everything I thought I should do:  I ate a Brazil nut a day for selenium, I took Acetyl-L-Carnitine which was cleared with the Endo, and MethylB12 and Methylfolate.  My tests were again completely in the middle of the normal range, with low levels of both types of antibodies [for GD and for Hashimoto's Thyroiditis.]  It is the antibodies, not the thyroid, that cause the eye problems.

      It seems to me that the antibodies decrease when you are feeling well otherwise.

      In 1966 I had eye muscle surgery to correct my strabismus, which helped for a while.  Then I had prisms in my glasses to help with that. In 2009, I had a second surgery on my eyes.  The surgeon was told about the first surgery but while doing the second one, he realized there was nothing more to correct on the right eye and all he could do was work on the left eye.  It didn't help.  They could work on the outer muscles in a more complex operation that would leave me such that I would always have to be looking straight forward, but I refused it.  Instead I had my doctor give me reading glasses with prescription for close work, magnification, and strong prisms, all of which help me to read and do close work with single vision. I wear them all of the time which helps me ignore one of the images from one eye at a time while looking over the top of my glasses.  I was once near sighted, but now I see 20/20 without looking through my reading glasses.

      That's up to date, now.    I hope it helps you somehow.

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