Lisa’s Story

I was diagnosed in the summer of 99 with Hashimotos. I was pretty sick at the time, but contributed all to the stress of having had constant company that summer. At diagnosis, my TSH was 200, T4 was 1! I don’t know why I wasn’t comatose! Going down a list of hypo symptoms, I had em all! I had no insurance at the time, so I chose an endo I could afford. Unfortunately, I got my money’s worth!

About four months after diagnosis, my Hashis became Hashitoxicosis. (Hashitoxicosis is transient periods of hyperthyroidism seen in Hashimotos. As the thyroid is destroyed by the AB attack, excess thyroid hormone floods the bloodstream and causes hyperthyroidism.) After nearly a year of hyper labs, Synthroid reduction and eventually coming off of Synthroid altogether, the endo told me what my 3 options were (neglecting to tell me the pros and cons of each) and said I needed RAI. I couldn’t afford it, so I “settled” for Tapazole, much to my Doctor’s dismay.

After 6 months of hyper labs, I was showing signs of thyroid eye disease. Each time I complained to my endo about my watery eyes and sensitivity to light along with the deer in the headlights look, the only thing he said was “Can you close them?” And since the answer was always yes, that was the end of the discussion.

By June of 2001, one of my eyes had swelling under it and was beginning to protrude. I thought the excess thyroid hormone was causing this, not the antibodies. My doc never addressed it or explained anything to me about what was going on with my eyes. So when my insurance kicked in and would pay for it, I went to the endo and told him I wanted the RAI. I specifically asked him if it would make my eyes better and he said, “Maybe, maybe not.” He certainly never told me there was a possibility that it would make them worse!

I asked if I needed a scan to determine what amount of RAI I needed and he said I didn’t need that. It had been about 5 weeks since he had done bloodwork. The last time I had it done, he had lowered my Tapazole from 20 mg a day to 10 mg a day. So the Tapazole was working. Why he didn’t advise me to stay on it longer I will probably never know. No blood work was taken right before RAI.

He gave me a list of precautions to take for a week after RAI. He did not tell me if I should continue my beta blocker or Tap after I had it done. I trusted him. Silly me. He scheduled RAI for me and I made an appointment to see him again 2 months later.

I took Radio Active Iodine in Sept. 2001. Two weeks after I took the little pill, my thyroid eye disease had worsened to the point that I could not close one eye and I had double vision! Both eyes were just completely swollen and watering like a faucet. My husband made me call my GP to get a referral for an eye doc.

My GP checked my blood levels when I was there and I was already hypo.  I have a strong feeling that I may have even been hypo before taking RAI.  The last blood work 6 weeks before RAI, my TSH was 1.79 and my T4 WAS 11.1!!!!!   So I was within normal range! (OMG I am getting mad just writing this! )

Well, I was referred to and made an appointment to see a neuro ophthalmologist.  I couldn’t go to a regular ophth because of the double vision.   After I got that appointment, I went home and got on the internet to see what I could find out about my TED treatment options.  I found a neuro ophth that gave his email, so I wrote to him. When he wrote back to me, his first sentence was, “It is well known that RAI can worsen TED!”   I ran to the bathroom and threw up!   And my life has not been the same since I read that sentence.

I had researched RAI before I swallowed it, and all of the websites that I found talked about treatment of choice, safety and a cure!   After I threw up, I dug deeper and found out differently.  Oh how I wish I had found the websites that told the truth before I ablated my thyroid!!!

So now I am in the care of a new endo (after firing #1 and #2), a neuro ophth and an ocular plastic surgeon.  Right now it is a waiting game.   I have been on Synthroid, 150 since March 2002.  (NOTE- I became hypo again in Oct. 2002 and my Synthroid has been raised to .175.)   In August 2002, my TSI ab’s were still elevated (325, normal <130), which means my eye disease is still active.  Since my vision is still 20/20 and my optic nerves are not in danger, I have postponed the decompression surgery that my doctors have urged me to have for cosmetic reasons.  I am not willing to be carved on to treat an autoimmune disorder! Too many times, patients are rushed into surgery while the eye disease is still active, causing scar tissue and more damage as the disease progresses.  My doctors do not agree with me, but admit that it is my call as it is elective at this point.   My doctors agree that it is my call and that since I have active eye disease, I should wait it out with no treatment.   I was advised not to take steroids because of the side effects and I refused radiotherapy as I don’t want any more radiation in my body!

I have had to quit working and driving.  This has caused such a strain on my family financially and emotionally.   I have become a self imposed prisoner in my home as I hate going out in public because of the stares and double takes I get from people.  The eyes are the “window to the soul”, and I battle with depression because I feel so ugly, like I have lost the girl I used to see in the mirror.  This eye disease is worse than the thyroid disorder ever was for me.  I wouldn’t wish it on anyone.

However, I have come to look upon my situation as a blessing rather than a curse.                                                          I have learned patience (something I always prayed for) and I am able to reach out to others so they can be aware of what can happen with RAI, while sharing my faith at the same time. God doesn’t make mistakes, and this is His will for me and I’ve got to trust that He is in control and GO WITH IT!

Update April 2003 :  I am hyperthyroid again and my dose of thyroid hormone replacement has been lowered from .175 to .150.  My TSI antibodies are higher than they were 8 months ago…428%.

Update Aug,2003:  My TSI in June went down to 270%!  Whoo Hoo!  Opth appointment in July went well…he says there is SLIGHT improvement since I saw him in March.  So, it is getting better, but the wait continues.  I am hypo on .150 and hyper on .175, so I am alternating doses to see if this will get me on an even keel.  I recently had a rough bout of depression and am taking Celexa for that…it helped me get out of the hole I was in!

Update March, 2004:  Hanging in there, by a thread some days, and have not had surgery yet.  My last TSI in Sept. 2003 was 245%. Still alternating doses of Synthroid and taking Celexa for depression.  I am also in therapy with a Christian counselor and that has helped a lot! I was denied SSA Disability at two levels and just had an appeals hearing last week. Will update again when I find out the judge’s decision. This is a current picture of me:

 Here is the moral to my story:  First, don’t trust a person just because their first name is Doctor. That is what I did and it has cost me dearly. Please find a doctor who is concerned about getting you well, listens to you, asks you questions about how you feel, and is willing to go outside of the norm in your treatment if that is what you desire.

Some of us cannot tolerate the meds. So we are left with choosing the lesser of 2 evils…RAI or surgery. And it is a personal decision that no one should make for you. But out of those 2 choices, the risks are greater for RAI than surgery in my opinion. RAI sould be a last resort, not the “treatment of choice.” I am a firm believer that RAI is outdated, unsafe and barbaric.

Third and very important….RAI IS CONTRAINDICATED FOR PATIENTS WHO HAVE THYROID EYE DISEASE!!

Again, the decision is yours and yours alone. My advice is to please please please do your homework and dig deep before you make a permanent decision about treatment! Don’t be pressured. Make a decision that YOU will not regret.

God bless!
Lisa

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