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What's the best solution for Hyperthyroidism and TED?

Posted , 6 users are following.

lynda08
lynda08

Hi everyone,

I was recently diagnosed with Hyperthyroidism in early July. Before that, since around March, I noticed some changes in my eyes that has progressively gotten worse. My endocrinologist has prescribed me with methamizol which has helped my hyperthyroid symptoms and has brought my hormone levels back to normal. She recommends that I get the RAI treatment to cure my hyperthyroidism but after doing some research it seems like those with TED has gotten worse after the RAI. I reached out to my ophthalmologist and they also said that from being in teh clinic, they noticed that there is a trend in eyes getting worse for TED patients who gets RAI treatment and would recommend an alternative treatment. I've gotten a second opinion from another endocrinologist and he agrees, and recommends I do surgery to remove the thyroid instead. I do not want to get surgery but I definitely don't want my eyes to get worse. I feel like in this case surgery is the best way to go but was wondering if anyone else on here has gone through the same thing and would like to provide their experience or advice?

Thanks in advance!

0 likes, 26 replies

26 Replies

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  • dee_kee
    dee_kee lynda08

    Posted

    My vision steadily got worse and almost 2 weeks ago I had radiation treatment for my hyperthyroid. Basically my choices were get it or eventually have a thyroid storm

    And you will die said my endo. So I have not had any further changes in vision and will wait until my symptoms improve and go back to eye dr. (You know since my treatment I have decreased my beta blockers tremendously)

    • linda187
      linda187 dee_kee

      Posted

      Unfortunately RAI does not get rid of the thyroid antibodies that cause TED.  Physicians are not treating this disease properly and patients who have gone into remission can teach them a lot if they are open to learning.  You will not have a thyroid storm if you are properly medicated until your antibodies normalize and you watch your iodine intake and you take supplements as well as meds in order to go into remission.  What your Endo told you was a crock and a lie. 
    • hypnocool
      hypnocool linda187

      Posted

      I agree linda.... my endo tried to talk me into Rai because I was getting itchynes.. but found out that I was over medicated by methimazole so I had to beg her to lower the dose and see if if my itchyness improves.. thankfully It improved... I swear some doc just wants short cut

    • jean34329
      jean34329 dee_kee

      Posted

      Hi Dee kee

      What was your thyroid function results? My TSH is 0.16, T3 not done T4 16.5 TPOAS less than 33. Multinodulsr goitre. Kind regards Jean x

    • jean34329
      jean34329 hypnocool

      Posted

      I saw your posting and was very interested esp i what you said about some doc want a short cut. What did you mean? Jean x
  • dee_kee
    dee_kee lynda08

    Posted

    Obviously my tsh  was very low, my RAIU was at 58% should be around 10-30%.  I was asking for alternatives but everyone I spoke with including endo hated side effects from thyroid blocking meds.  I had to do something quick.  Not only was my pulse staying in the 100's, I was short of breath all the time and can't excercise.  Severe insomnia, irritability, vision changes and even my hand writing has gone south from tremors.  It was so fast I went from working out really well with weights squatting at 160lbs working weight to barely could lift 120lb and sucking wind the whole time.  Had several bouts of chest pain.  I'm only 42 female. 
    • lynda08
      lynda08 dee_kee

      Posted

      Hi Dee Kee, have you noticed any improvements in your vision or stability at least? What about your health? Are you more energized and working out like normal now or is it still too soon to tell?
    • jean34329
      jean34329 dee_kee

      Posted

      What does RAIU mean? Sorry but have a headache, feel sick, joint pains, depressed, anxious, eyes sore.
  • dee_kee
    dee_kee lynda08

    Posted

    Have tried light working out, I play sports but I have to stop and huff and puff. My vision not a big difference yet.  I still have bouts where my thyroid puts out a lot and I pant, sweat and heart palpitations.  I explain to family to forgive me I am going to walk off and be alone.  The irritability gets bad and I don't wanna snap at anyone.  I can get down right hateful and that's not really me.  Working through it.  Thanks for asking.:-)
  • dee_kee
    dee_kee lynda08

    Posted

    RAIU is radioactive iodine uptake.  I first had a nuclear scan with a small amount of radioactive iodine after starving mt thyroid of iodine for a week and it showed where my thyroid was over active.  It was super high so no need for a 2nd one , next day had ablation ( radiation capsule). Will eventually kill off some or most of my thyroid.  I will be hypo in future and take thyroid medication.  For mr it will be easier to manage.  Hyper has really altered my life.  
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