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Eye Graves desease and Hypertireoid

Posted , 3 users are following.

Deia
Deia

Hi!

i was diagnosed with  hyperthyroidism in 2001 when I still lived in Brasil. My doctor prescribed me methimazole 30 mg and as I got better the doctor lowered the dosage and after 18 months of treatment I stopped the medication and I thought I was healed. I didn't have any problem with my eyes this time. Yes, I was healed for 14 years until in Dez 2014 I felt the symptoms again and I went in An  endo doctor here in San Diego since I live here now. The doctor prescribed me methimazole again but this time only 10 mg. My blood levels were very bad an I told the doctor that 10 mg was not going to be enough to down my levels since I dealed with it in the past. My doctor didn't agree so I had my levels bad for almost 4 months until I raise my medicine for myself. I was tired to suffer with the symtoms. I got 20 mg and my levels got better after one month taking this dosage. 

After 4 months after I was diagnosed with thyroid problems I started seeing some transformation in my face but I didn't know what it was until I figure out that my eyes were getting puff and bulgy. 

Any time my doctor told me about graves desease. He just told about hyperthyroidism. He didn't ask me to make a test in my antibodies or for I go in an ophthalmologist. When I noticed this problem I asked him to refer me to an oftalmologist and he told me there was nothing they could do for me. I disagreed and I got an appointment with an ophthalmologist that is also an octoplastic especialized in eye Graves decease. I waited 1 1/2 year to see if it was going be better and it didn't. So he told me that I needed to have a fat decompression sugary in my eyes and I did it 4 weeks ago. My left eye was more bulgy then the right before the surgery.  Now after the surgery my eyes are the opposit. The left eye is much small then the right one. I have scars on my up lids and the up lids are very different from one another. My doctor told me he can fix it next month but I don't know if I want go through this surgery again. I have fear of it gets worse...Everything I read about this doctor is that he is one of the best doctor for this surgery in USA so I don't know what to do.  Also, the last 6 days I started having symptoms that my levels are bed again after 9 months good. I don't know if the day I had the eye surgery my thyroid levels was bad. One mont before the surgery my levels were good. 

I am here because I have some questions you guys that is suffering with this desease and somehow you got some experience with that. 

Should I make a correction surgery to try to make my eyes less different? 

By your  experience do you think that the fact that my endo didn't gave me the right dosage of Methimazole could make my problem worsen?

 

0 likes, 10 replies

10 Replies

  • kristyk
    kristyk Deia

    Posted

    Hi andrea74090,

    I had Graves Disease and Hyperthyroidism also. I dont know if I can help you but can I ask how old you are? Did your eyes get puffy and bulgy originally?

    Kristy k

    • Deia
      Deia kristyk

      Posted

      Hi Kristtyk.

      The first time I had this desease I was 33 years old and my eyes were not affected at all.

      Hen the desease come back I was 46 and after 3 months of treatment with 10 mg of Metimazole my eyes became puff and swallow and then bulgy.

  • kristyk
    kristyk Deia

    Posted

    Did your doctor do labs on you during the time you were prescribed the lower dose of medication?

    Kristy k

    • Deia
      Deia kristyk

      Posted

      Yes, he did labs and he knew that my levels were bad with only 10 mg. So, as I wrote, I took 20 mg by myself and I got better. Now I am treating with another doctor. We lowed de dosage step by step and now I am on 10 mg and my levels were good. I started feeling bad again last week. I have an appointment with my doctor next week. My concern is that for almost 9 months I was feeling great and I taught the desease was in remission but now I don't know what is happening
  • kristyk
    kristyk Deia

    Posted

    Hi, Like I said I dont know alot about what your dealing with but I dont think I would rush into surgery again until you are feeling stronger. Graves Disease is an autoimmune disease and basically the thyroid is our barometer for our bodies.I would ask all your questions when you see the doctor next week. I think if you look online there is a foundation for Graves, Hyperthyroidism, Thyroid or something similar. I would contact them for help and advice. It a resource that I know is going to help guide you. Let me know if you contact them. I'll check too and if I can find I will send you info. I'm sorry you've had to go thru this. It just sounds so stressful and painful. You've dealt with this for a long time with not even knowing what's really happening to you.

    God bless you

    Kristy k

    • Deia
      Deia kristyk

      Posted

      Thank you so much Kristyk!

      I will try to check this foundation.If you find it please let me know.

      It is painful but I have faith that I will be healed soon.

      Have a blessed day!

    • kristyk
      kristyk Deia

      Posted

      Andrea, American thyroid association. Mediator wasn't approving my giving information to you and web site. I understand. Keep that faith. That's what keeps us going. God is good. Things will get better soon because of the positive attitude you have. I truly believe that.

      God bless you

      Kristy k

  • sylvana19005
    sylvana19005 Deia

    Posted

    Hi Andrea! I'm also Brazilian and I'm trying to deal with my Eye disease as well. I went to Kellogg eye center in Michigan, and I schedule my surgery for next month. I need a lateral decompression and fat transposition. What kind the surgery did you have?

    I think 4 weeks is to soon to evaluate the results, but I would like to know a little be more about your surgery experience .

    • Deia
      Deia sylvana19005

      Posted

      Hi Sylvana!

      Good to hear from a Brazilian here. I am sorry for you have been suffering with this desease. I know your struggle.

      My surgery was fat orbital decompression. The fat around my eyes on my up lid and down lid was pulling my eyes out and making the appearance of my eyes ugly. Also my eyes were bulgy. The right one was worse.

      I know that the way my eyes are now will not be better with more time. Even my doctor told me that I need a correction.

      I don't know if this surgery was a good choice for me since my eyes still are very different. Now they look worse then before the surgery and I have to pay for my insurance deductible that is high sad

      I didn't have a general anesthesia and I didn't spend the night at the hospital since it was a light surgery. The time of the surgery was only 1:30 hr and I left the hospital a couple hours after. My vision is better but the appearance is bed. I think I would'nt do it again.

      I don't know how to send you a privete message. I have got some but I can't send it, so if you know how to do it send a private message for me and I can give you my email or my phone number and we can share our experience.

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