Wednesday, January 19, 2011

Part 2: The Public - Thyroid Radiation Treatment Collateral Damage

My story of RAI thyroid ablation isn’t so easy to tell.  It’s hard because it involves admitting that I did some things wrong.  It’s important because as conscientious as I am, I know I’m not the only one who has made mistakes with the treatment, or to whom mistakes were made…

To read part 1 of this series, see this link:

Before RAI

It took years to finally get my diagnosis.  I was then treated by an endocrinologist who was less than enthusiastic to be treating patients in my town once a month.  I later learned that the ATD (Anti-thyroid drug) treatment I got was not appropriate and was possibly one of the reasons it did not work.  Instead of getting better and staying better, I got better then I got worse.  ATD’s are designed to be taken multiple doses each day.  Labs should be taken to monitor thyroid levels throughout treatment, with an eye on optimal levels in which the patient is feeling their best.  For me, this didn’t happen.

Eventually, I changed doctors and was encouraged to do what my endocrinologist should have done from the start – find out which autoimmune disease I had.  I was told it was likely Graves’ Disease, and my uptake scan showed extremely increased uptake which is one of the hallmark symptoms of the disease.  I had never had antibody levels drawn though, which would have been a much more accurate diagnostic tool.  I know better now, but back then I didn’t know any of this.

The Decision

After my uptake showed Graves’ Disease, I was told I needed to do something.  I could go back on ATD’s, choose surgery or radiation.  I remembered the scars on the necks of 2 friends from their surgeries, and I was vain – I didn’t want another surgery, and I didn’t want another scar, especially one that made me look like my neck had been slit.  I was told it was safer than surgery, resulted in the same outcome – a cure – and that it just didn’t involve a knife.  When he put it that way, I was all for the ablation, and the sooner the better.  I was desperate to feel better.  I didn’t know the ATD treatment had not been appropriate, and I thought the RAI was going to cure me.  I enthusiastically agreed to the RAI, and it was scheduled for the next day.

The Treatment

When I arrived for treatment, I was seated on a table and the process was explained to me.  I was told a few things to avoid.  I asked several questions – what about my husband?  What about my children?  Was there any danger to them?  I was told there was no danger to them.  Would it make me sicker?  No, it was going to cure my problem.

Radiation aftermath

I ate dinner out with my husband, then we went home and we joked about turning off the lights and seeing mom glow in the dark.  I carried on as usual.  I slept next to my husband.  I hugged and kissed my children, and yes I even laid in bed to read to them.  I did laundry as normal, washed dishes together as normal.  I bathed as normal.  Everything I did was normal as the radiation in my body created a radiation “fog” around me, touching everything within many yards, then eventually feet of me.  I washed my kids’ clothes and likely contaminated them with mine.  I bathed in the same tub and likely contaminated them.  The list of ways I likely contaminated my family is too long for me to consider without serious depression setting in.

I should have been warned to keep personal activities to myself for at least a month.  I should have been told about the radiation fog that would touch everything I touched.  I should have been told to stay somewhere else (Where do you stay when you’re spreading radiation everywhere??).  They quarantine animals who go thru this procedure, why not people??!

I should have been warned to drink more.  At the time it was very difficult for me to stay hydrated and I had suffered many kidney stones as a result.  I had Migraines, but they began to become more frequent and debilitating.  Others I talked to later told me they were warned of memory problems after RAI, as well as other gland failures such as tear and saliva glands.  I did become dry, and my cognition became very impaired.  It was assumed that my cognition problems were a result of my Migraine medicines, but I was never able to remember things well after that, even after the medicines were stopped.  Nobody mentioned Sjogren’s Syndrome to me at the time.  I had earlier dryness issues, but I should have been warned that I needed to pay special attention to my hydration so that my glands wouldn’t be damaged.  They are damaged today, but no one can say which was the chicken and which was the egg.

One day, as I was sitting eating a piece of boneless chicken, I had a horrible pain in my throat.  It literally knocked me to the ground.  I couldn’t eat or drink anything else for over a month.  I saw my doctor who diagnosed me with RAI induced thyroiditis.   There was concern that it had damaged my esophagus, but because of the thyroiditis, there was no way to test it to find out until the inflammation subsided.  I used chloraseptic by the bottle because my throat and esophagus was so raw.  I lived off Ensure for several weeks, and it was months before I was eating solid food normally again.  Over the course of my entire illness, this was the first time I had noticed thyroid inflammation, but you could see the outline of my gland plainly on my neck.  I didn’t know it at the time, but that incident marked the first “lightning strikes” of neuralgia in my neck and face that still plagues me today.

I did begin to feel better, but then my breasts began to bleed.  I got concerned and saw my OB/GYN who drew blood.  He was concerned about the RAI procedure may have caused the bleeding and said they would call me if there was anything to worry about.  The paperwork was misplaced, and more than a month later I received a frantic call from the nurse telling me I needed to go to the pharmacy immediately for a prescription.  She apologized for misplacing my results, and she told me they were far from normal.  Since the blood had been drawn many weeks ago, they were extremely concerned for me.  I began taking the thyroid supplement, and thus began my metabolic rollercoaster ride.   

A few years later, my daughter began showing signs of thyroid disease.  I asked for her to be tested, and it resulted in a diagnosis of Hashimoto’s Thyroiditis with a significantly high antibody count.  My son eventually got the same diagnosis, and even our dog was diagnosed with thyroid dysfunction, as was one of our horses.  My husband himself remains borderline, but I suspect he will require thyroid supplementation soon as well.

How many thyroid patients in a single household can be considered normal??

It’s not difficult to guess that with the high dose of radiation I received, my habits after treatment exposed everyone in my household to my radiation.  There is no way to know if the radiation I spread to my family and pets caused their own thyroid problems.  I have asked my doctors but nobody can tell me anything for sure.  I worry about my husband who already has a very strong  family history of cancer.  I worry about myself as well – what other damage occurred that didn’t need to happen at all?

What have I done...?

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