Tuesday, July 28, 2015

Why I chose a total thyroidectomy over RAI treatment

This topic is something that I have been thinking about posting for a while, but have kept it to myself. Mainly, because its a hot topic for me and it really gets under my skin.

I want to preface this with a little background about me. Most of you that have known me or read my blog for any amount of time, know that my health is at best....not good.

  • I have severe Crohn's disease (diagnosed May 2012)
  • I have/had aggressive Grave's disease (autoimmune HYPERthryroidism) that wasn't responsive to medications. (diagnosed February 2014)
  • I have a very ultra rare disease called atypical Hemolytic Uremic Syndrome. (diagnosed September 2014)

I've been through multiple surgeries/procedures/etc for the last 3+ years due to these illnesses.

I have my people that will advocate for me. But I have also learned to be my OWN advocate.

In doing so, I have read anything/everything that I am able to get my hands/eyes on in relation to my diseases. I pride myself in learning about them and being able to educate others on them when needed.

And trust me, with an ultra rare disease (and the others as well) I have had to educate even regular doctors and specialists on my disease.

I don't claim to be in the medical field or be an expert on it all. I don't claim to know EVERYTHING there is to know. But if I don't know I will research the hell out of it and ask questions to the appropriate channels.

So, this brings me to my topic: why I choose a total thyroidectomy surgery (total removal of the thyroid) over RAI, or radioactive iodine treatment.

I researched each of these very closely. I reviewed the pros and cons of each. I asked around for personal opinions. I seeked medical advise.

One thing I will tell you is that "most" of my doctors suggested RAI treatment so that I wouldn't have to go through another round of anesthesia and another surgery.

I got 2nd opinions. I did my research. I learned the ins and outs of both.

When I was in the testing phases of the thyroid disease. I had to do an uptake scan. I thought to myself, this will be no big deal. I will go in, swallow a pill, go back later for a series of scans. I've done a million (that's an exaggeration, I've really only done 8,427 ha!) other tests in my health history and this one appeared to be easy.

And it was. That is until I got to the radiation room at the hospital to get this tiny pill. Then I became a little terrified.

I was taken into a room for radioactive materials. Ok, no big deal. X-ray room. No. I sat in this room with my husband. Finally a radiologist appears. He is in full gear. Hazmat outfit, gowned head to toe with gloves and shoe covers and a mask. I start to panic. He goes into the back room to get this "special pill". He comes out with a metal tube. He opens it. pulls out another metal tube. Opens it. Pulls out a medicine bottle. opens that and pours the pill in my hand and says...."here, take a drink and swallow the pill. Then dispose of the cup in the radioactive container before you leave."
um what the F? but I obliged and did it. I was seriously scared of what was going to happen with this pill.

Turns out. It's a very tiny dose of radioactive iodine. Blah. I went back the next day for the scans. My thyroid absorbed 93% of the radioactive iodine. This isn't good. This indicates high hyper-thyroid disease.

Then I started wondering, what happens to the remaining percentage of the radioactive iodine that my thyroid didn't absorb. What effects could this possibly have on me?

So I was back to doing my research. 

When you are given RAI treatment ultimately, it absorbs high doses of it in the thyroid and this kills the thyroid. You are quarantined from children and pets for a great amount of time due to the radiation. You can't use the same bathroom as others for a while. You must flush twice in the restroom, etc. 
Once your thyroid is dead,  you are considered hypo thyroid and will take meds for that to level you out.

So, again, I questioned what would happen to the RAI that my thyroid didn't absorb? It has to go somewhere right? 

I started asking questions to my specialists and I learned a lot. Most people with RAI, their body absorbs it and they are fine. Some expel it and are fine. 

Others have future risks. Like cancer later in life due to RAI,  which can include bladder, breast, central nervous system, colon and rectum, digestive tract, stomach, pancreas, kidneys, lungs, melonoma of the skin.  

This is where I stopped. I have Crohn's disease which carries a higher risk of cancer to the colon/digestive tract. I also have family history to stomach and pancreatic cancer.

Do you see where I am coming from when I say that RAI Treatment was not an option for me? 

To me, this was a no brainer due to my health history and potential health issues in the future. 

I went in, had my total thyroid removed. Spent the night at the hospital, had the drained pulled the next day and went home. 1 week later I was back at work and starting the thyroid replacement medications.

Yes, I had ANOTHER surgery. Yes, I lost a very important gland that our body needs. Yes, recovery (mainly just the voice issues) haven't been a blast. Yes, any surgery is risky. 

I get it. 

Does this make me deserve to be questioned about my decision for MY health? Or does this justify me literally being told that I am stupid for choosing a total thyroidectomy over RAI treatment?

If you have thyroid issues and surgery/RAI treatment have been mentioned, I highly recommend that you do your research. You ask questions. You do what is best for YOU.

I am adding a few links to this that have been very beneficial for me during this process. Please read them.
Join the FB groups and visit the website for Stop the Thyroid Madness. Ask questions to patients, specialists. 

I am always open to answer any questions that I can. 

But please remember, I am not a medical professional. I will answer questions to the best of my knowledge and research. If I don't know the answer, I will refer you to a place or person that does.

Please also note, the above only pertains to my situation and health history. What you choose for yourself is a very personal opinion and one I will not ever judge you for. Please give me that same respect.