Tyreoid eye desease

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I am back here to say how frustrating I am about this desease.

I was diagnosed with hyperthyroidism in Dez/14 when I started takin Tapasole. After 5 months in treatment for that I was diagnosed with graves eye decease with bulging, puffy eyes. I had a fat decompression surgery last month in my eyes. Two weeks after surgery I started feeling my that my thyroid was overreacting again after one year in normal levels.

I just came from my doctor and I got the result of my blood test and my TSH is 0.00 now????? In March it was 0.794! Now I am scary because my doctor wants I remove my thyroid ASAP. He told me my eyes can be affected again and we can loose the surgery I got for my eyes. Also my heart is beating like crazy and my blood pressure is very low so he can't prescribe me enough mg of Propanolol to low down my heart. Also I lost weight and I am feeling miserable since this past week.

Anyone here that experienced something like that? I mean, someone that was with good lab tests for one year and than got bad like that?

I never had so low TSH. The lowest was 0.01 when I was diagnosed with that.

Also, do you know if I remove my thyroid I can have bulging eyes again????

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5 Replies

  • Posted

    Yes. The eye disease will come back if your thyroid becomes over active again. Some people will have the disease return throughout their life if something happens to set it off. Stress is the main cause or it could just be an infection or in your case perhaps the trauma of your op. I'm the same and don't want it reoccurring for the rest of my life. Whenever it comes back it seems worse than the time before with sometimes new symptoms. I think your doctor is giving good advice. Have the thyroidectomy or you will be up and down for the rest if your life. I even went into remission once but it came back again. I think your doctor is giving the best advice.

    Make sure you understand what will happen afterwards and enjoy the rest if your life without the worry of it happening again.

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    • Posted

      Thank you Sue.

      Yes, you are right. I had it in 2001 and it came to remission for years and now that it came back the Symptoms are worse and I need more dosage of medicine than before.

      My only concern is that based in what I have read the thyroid is the victim in Graves desease and my question is what can happen after thyroidectomy with my body. What is going to be the victim.

      Also, can my eyes be more affected after the surgery? I am trying to search about it. If anyone here know this answer, please helpe me

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    • Posted

      I have Graves, my eyes are itchy, feel swollen.

      im leaning towards a thyroidectomy too.

      id also like advice about how to deal with that after , and the best way to go to feel better.....

      anyone? X

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  • Posted

    Removing the thyroid can actually worsen thyroid eyes! Since you mentioned you have Graves, it's not the thyroid that's causing your bulging eyes. The autoimmune disease is the one affecting your thyroid and your eyes.

    I too, have Graves and I'm taking supplements (turmeric, selenium, acetyl carnitine) to balance and counteract it. I have noticed less eye puffiness and it is not worsening. Hope you find what will work for you.

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    • Posted

      Hi Nadia!

      Thank you for your response.

      I was raised from 20 to 30 mg of Methymazole 3 weeks ago and feeling better. I just got my lab and my TSH raised from 0.00 to 0.04 in only 3 weeks and my T3 and T4 are almost normal.

      I have searched a lot about this desease and it is not certain yet what will happen if I remove my thyroid by surgery. Some people have eyes improved some have it worse. I don't want to pay the risk for now.

      I always have eaten organic food and avoided sweets, deserts, chocolate, ice cream. I really don't like these sweet food or junk food. I usually have cooked every day and avoid food from restaurants. No drugs, no drinking alcohol no smoking. I don't understand how I got seek.

      I started take Seleniun, vitamin D and Acetyl L Carnitine. Also I am in a diet. No white wheat, no caffeine, nothing that contain iodine or ocean food, milk or dairy food, no sugar.

      I am having green smothie every morning as my first meal ( brocolis, spinach, kale, colored green, flaxseed, strawberry, Brazilian nuts and almond milk all blended. The flavor is weird in the beginning but now I am ok with the grass taste smile I am using sea salt and eating only organic chicken, salad and vegetables.

      Let's see how it will work for me. I am faithful that soon I can lower my medicine until the point I don't have to take it anymore. I really don't like to have this chemical in my body.

      I hope you can be healed too.

      Sorry about my English. It is not my first language.

      Thanks

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