neskirimliJune 2, 2018 at 8:45 amPost count: 6
Hi everyone. I’m following this forum for a long time. And decided I need to share my version of Graves.
I’ve been diagnosed and the battle started 6 years ago..
Spent 2 years suppressing the hormones and praying the Graves to back out. well that didn’t happen What happened is, it came forward and attacked to my eyes. My eyelids retracted.
Its so easy when you are writing it down. “my eyelids retracted”, 3 simple words. It wasn’t so easy while you were living it. Besides never ending painful days for months! it was so depressing to be sick all the time. And that look on people’s faces… they weren’t helping either. Each one pushes you inside yourself (I know some of you understands what I mean)
I tried anything. Anything I read here and internet, anything people said might work. Even tried acupuncture. When you are that desperate you can let people stick needles to your eyes.
Well nothing worked.
And my Doc said that I need total thyroidectomy. And I said ok. I cried myself out like a child saying “my poor thyroids, they didn’t do anything wrong why do they have to die”.
But I did it. Cause that’s what it supposed to be as my Doctor said they need to go.
Its been 3 years. I’ve never felt like “I was cured”. But I was better then before. My eyelids came down slowly in months. Never returned what they exactly were but I even had surgery for my eye bags, 1 year after the total thyroidectomy. Cause my doc let me. He said “graves is gone. your eyes are stable”
I was like “ok maybe I’m not cured yet but I’m getting there. Even its slowly”
Well that never happened either. Neither my doc found a balanced dosage for my thyroid hormones nor I felt “healthy as before”. Feeling tired most of the times, lost so much hair, the feeling that I’m getting older faster then ever (my skin etc) were always there. The disappointment.
All these changed a few days ago. Apparently I was disappointed for nothing as there still is more to come! Battle wasn’t over..
Cause my eyelids started to retract again. So its official that I’ve been miss led by my docs. Apparently, Graves never goes away even if you have removed your thyroids. So I lost my organ for nothing. I had two surgeries for nothing. Furthermore I had my hopes up for nothing.
And I don’t know what to do now. Even the thought of those painful days are coming back, makes me.. dark.. and so hopeless..
Wishing you all have a better luck.
NessLiz1967June 2, 2018 at 3:01 pmPost count: 305
Thyroid orbitopathy can recur. It is less likely with thyroidectomy than antithyroid drugs or RAI, but it can happen with any treatment. I chose thyroidectomy because I had the eye disease and surgery would stop it sooner than continuing on meds. So your decision to have TT was not misguided, was actually your best option but there are no guarantees.
I am not sure why you are not feeling well. I keep my TSH between 1 and 2 and I feel exactly as I did preGraves. You might try another endo (I am managed by my internist) or even look for another reason for your fatigue. Another factor could be if not all of your thyroid was removed and a remnant is intermittently chugging out hormone.
Lid surgery is generally the last surgery done on thyroid eye disease. Usually you would have orbital decompressions for bulging and/or neuropathy, followed by strabismus surgery if you have double vision, then lids. In your case, you were lucky enough to only have retracted lids and a year without further retraction or other changes would normally be long enough to wait to repair only retraction (assuming you had no bulging, pressure change or double vision).
Orbital decompression is also done so that should the orbitopathy recur, there will be room in the orbits so you do not risk compression of the optic nerve and further bulging. You should be under the care of an oculoplastic surgeon familiar with Graves. Are your lids just retracted or are your eyes actually bulging, causing lid retraction? I had one minor recurrence shortly after the final lid surgery (I have had 6 surgeries on each eye) and it was treated with high dose oral prednisone, which stopped it nicely. Other options might be IV steroids or ocular radiation (not RAI) if you do not need orbital surgery.
The best advice I can give you is to find doctors very familiar with Graves. If you are close to a center that specializes in Graves or a large teaching hospital, it might be worth the travel.
While you will have antithyroid antibodies always, with no thyroid to attack, they cause no problem unless in the rare case where they mistakenly attack your eyes. One attack is rare, recurrence even rarer.
If it is any help, I had my thyroid removed nearly 5 years ago, completed my last eye surgery 1year ago and except for some residual diplopia, my life has returned to normal. It does end. Sometimes retraction does get better on its own or with steroids but only a skilled ophthalmologist can determine what is best in your case.
In this disease, you really need to be proactive with your care. Research medical specialists and change doctors if you are not happy.neskirimliJune 3, 2018 at 12:28 amPost count: 6
Thank you Liz, for all the info! Really appreciated!
Maybe my main problem is that. Apparently I couldn’t find a doc who was experienced enough about Graves. Cause he said Graves will be gone after TT, eyes wont be affected anymore etc. That was the misguided part. And its been 3 year but my TSH goes up and down in every 2-3 months.
My epicurize report says TT was successful, all of it was taken away. So.. And I’ve had all other things checked. And they all are fine, only short a bit of D vit but I’m getting it too now. Hence I’m having hard time to understand whats the problem.
And as this disease is not that common in my country I’m not sure if is there any doc genuinely knows Graves.
Anyway.. I’ve found another doc now. After some search. He seems he might know Graves better then others. And this one speaks very different then the previous. He says TT was a mistake. He says under eye surgery was a mistake. He says the daily Euthorox scale should be same each day or else it cant be balanced where my old doc was saying total weekly dosage should be same each week. All these are confusing to be honest. Its hard to understand if the treatment is not going well while your doctor says “this is normal”. You read and read but at the end there is a doctor saying “this is what it is, don’t confuse yourself with other stuff”. So you have to believe him.
About the eye attack, I don’t know if I can find an experienced ophthalmologist on Graves while its hard to find experienced endo. I’m thankful at least I don’t have bulging or diplopia or so. But I’m afraid of having them too. Cause I saw that you’ll never know what comes next.
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