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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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  • lynda08
    lynda08

    Posted

    Also, on top of all this, my husband and I are wanting to get pregnant as soon as its safe to do so. Would long term medication even be an option in this case?
  • jean34329
    jean34329 lynda08

    Posted

    Your eye clinic sounds good.

    JeanMay I ask if you are pre or post menopausal?

    • lynda08
      lynda08 jean34329

      Posted

      Hi Jean, I am premonopausal and we want to get pregnant. I heard methimazol may cause birth defects so don't think that's a good option..
  • linda187
    linda187 lynda08

    Posted

    Hi Lynda,

    Yes, long term medication is definitely an option.  I belong to another Board and one of the members has just had her sixth child.  Many of us have been in remission for a long time on low dose meds.  For myself, I found that adding supplements to my treatment plan along with the prescribed medication did wonders for me.  That's because hyperthyroid patients lose a lot of vitamins, minerals and amino acids from their bodies when they are running hyper and these need to be replaced.  I added L-Carnitine 3,000 mg after reading a research paper on the benefit of hyperthyroid patients taking this.  And I got tested for Free carnitine and Total carnitine and i was deficient.  I was also deficient in vitamin D so I added Vitamin D3 1,000 to 5,000 IU daily as well as Magnesium 200 mg daily and curcumin and Omege 3 for the inflammation.  My eye symptoms were extreme dryness and redness.  I used eye drops and recently found one produced in UK that is very good.  As well, my ophthalmologist inserted collagen plugs into my tear ducts to keep more moisture in my eyes.  Thyroid surgery will not get rid of the antibodies that cause autoimmune thyroid disease and many people do not feel as well or normal on levothyroxine which you have to take the rest of your life.  Many patients who have more severe eye symptoms have reported improvement upon taking 200 mg of Selenium a day or eating 2 brazil nuts a day. As well, others have reported improvement in eye symptoms after soaking cotton pads in witch hazel and placing them over closed eyelids.  Helps a lot with swelling.  Others with more severe TED  have had to have a course of steroid medication and/or ocular surgery but did well after this.  The main thing is to get your disease in control and reduce your antibodies and this is best done with medication, careful monitoring, supplements and avoiding stress.

    • lynda08
      lynda08 linda187

      Posted

      Wow! Thank you so much for the specifics you provided Linda! My initial plan was to take the meds and just maintain it that way but hearing my dr say there was a risk of birth defects scared us a bit. However, hearing that someone has had their 6th baby does bring me comfort. I will research further and try taking supplements as you advised to see if that helps any. Thank you again!
    • jean34329
      jean34329 lynda08

      Posted

      Dear Linda and Lynda

      WOW!

      I agree.

      I have Log QT syndrome, on warfarin so will have to check out the L Carnitine.

      Jean.

    • jean34329
      jean34329 lynda08

      Posted

      I think you should check this out with your dr and obstetrician.

      It is too important.

  • hypnocool
    hypnocool lynda08

    Posted

    My endo dr wanted me to go get RAI also since I have TED i too researched that the eye will get worst.  I kept getting this dry scaly hands and itchyness.  My doc really wanted me to do surgery tyring to prep me for 2 weeks and I said NO.  Lets try methimazole one more time and this time at a lower dose.  We found out that Im one of those people who are so sensitive with methimazole, I will get my T4 and T3 down fast but my TSH will still not register.  Long story short now after 1 year.  Im doing better and working out.  I also started eating these brazil nuts for my eye like 1 to 3 pieces because it has Selenium which helps my TED.  Overall Im happy... I haven't had any eye pain/headache since..
    • lynda08
      lynda08 hypnocool

      Posted

      Hi Hyponocool, thank you for sharing your experience. I was wondering if you are still taking a lower dosage of methimazole along with working out and the brazil nuts or if you are just working out that is helping you feel better.
    • hypnocool
      hypnocool lynda08

      Posted

      I started last year at 

      2. Start taking methimazole 10mg 3x/day.

      3. Start taking propranolol 20mg 3x/day. Always check your pulse before taking propranolol and change the dosages.

      To now at 5mg methimazole every other day. I also change a bit less fast food and bought non iodized salt in my kitchen.  My doc wanted me to take Selenium pill but my T4/T3 kept thinking im hypo so i stopped it and just eat brazil nuts just for maintenance.  I am working out now because I am not tired anymore like I used to.  When i was so hyper, I felt so helpless and always tired.  Now that my TSH is leveling I feel like a normal person.  I dont get tired a lot anymore using the treadmill.  That's how I ussually gauge if my heart rate goes up faster than normal then I would just go get blood test.  I also noticed that if im hyper or off my levels I have less patience to others... too many factors... 

    • jean34329
      jean34329 hypnocool

      Posted

      I was taking prescribed co codamol for the headache and throbbing pain in my right eye. I saw a neurologist who specialises in chronic migraine nd he said that the codeine was responsible for the eye pain etc.I was only taking 3 to 4 tablets a WEEK. The neurologist said that that was more than enough to cause the headache and the throbbing pain in the eye.

      A few days after stopping the codeine the headache and hrobbing pains subsided considerably. However my eyes were still dry and I had concretions which were irritating the eyes and causing grittiness. The concretions were removed under the slit lamp at the hospital.

       

  • vicky81955
    vicky81955 lynda08

    Posted

    I have TED quite badly which flared up in Spring 2013. Whilst my thyroid hyperactivity was brought under control fairly quickly and the TFH stabilised within normal limits after 6 months, my TED has continued to this day.

    I had intravenous prednisolone twice in hospital, then radiotherapy on the eye sockets. following that I continued with oral steroids for a further four months. all of that helped the eyes, but did not cure the disease. My consultant was concerned about the pressure which is too high can squeeze the optical nerve. So in February this year I had bi-lateral orbital decompression where basically more space is made in the eye socket for the inflammed tissue to spread and relive eye pressure. This has worked well and I am now waiting for lid surgery which should help with my 'staring' appearance.. I am now feeeling a lot better and should be allowed to drive again soon. ( I had double vision) 

    Right from the start my GP, endocrnologist and eye consultant said that I would not be offered RAI as I have TED. If my thyroid goes hyperactive again, they will try to stabilise it with a dose of carbimazole again or remove the thyroid completely.

    Sorry I've gone on a bit . . my TED was at the 'severe' end I should mention.

     

    • jean34329
      jean34329 vicky81955

      Posted

      Vicky

      YOU HAVE NOT GONE on a bit. You have sent is a comprehensive valuable piece of very important information. I too had thyroid eye which , touch wood, has now cleared up.

      A dr Sigested RAI for me, thankfully thanks to this Forum I earned that RaI was not appropriate, however you mention radiotherapy. Is that the same as RAI or another form of treatment? Why did you have the RAI iin the first place?

      Hope you dont mind my asking. Jean

       

    • vicky81955
      vicky81955 jean34329

      Posted

      Hi Jean

      The radiotherapy was the sort some cancer patients receive!  so I never had RAI at all.

      The treatment was very precise and for about 15 -20 seconds for each eye for 11 consecutive days. It was to try to remove some of the inflamed tissue behind the eyes. I had a mask made of plastic mesh which fitted over my head and was clamped to the table you lay on for the treatment -so you could not move at all. during that period 

      I had to take oral steroids to combat the effect of the radio therapy on my eye muscles. Not pleasant but didn't last long and seemed to stabilise the inflamed tissue. 

      Glad your TED has cleared up - how long did you suffer?

      Vicky

    • jean34329
      jean34329 vicky81955

      Posted

      TED strated in December 2013 until June 2014. Treated with lacrilube at night only under a consultant ophthalmologist then artificial tear drops, Optimist.

      I had concretions which were removed under the slit lamp.

      Have yo googled Sjogrens Syndrome. Did they do your anas, anti nuclear antibodies, ebv, have you been checked for Lupus/

    • lynda08
      lynda08 vicky81955

      Posted

      Oh wow, i'm sorry to hear you had to go through all of that Vicky... but glad to hear that things are getting better! And dont worry, you are not going on at all, it is really insightful to hear about others experiences and any advice at all is much appreciated. Regarding your hormone levels, are you still taking medications to stabilize that?

      Lynda

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