This scan experience was definitely one of the better ones. My TSH was high enough to scan but low enough to allow me to function fairly well @ 33! Now that may seem alarming to some Thyca (thyroid cancer) patient. Thyca patients that are normally suppressed, any rise in the TSH level is risky; however, for the RAI PET scan it is a must. I asked my doctor about my TSH not being as high as before (at 70+ the last 3 scans) and if this could be a problem.
He said that that for an effective RAI scan it should be 20 or better. He assured me that he would watch it and acknowledge if there were a problem or a pattern. Certainly, the more cells that are grown, along with STRICTLY following the LID Low/No Iodine Diet) to starve the thyroid cells of iodine, the better off you are.
Thankfully, I was pleased to learn that I can again be called NED (No Evidence of Disease). My results shown to have uptake in the thyroid cells that grew (this is wonderful news) and no tumors shown to have grown or cold spots evident. Had my thyroid cells failed to have taken up the radioactive iodine, the test would have meant it was an ineffective to find any tumors. I see more more questions on this by Thyroid Cancer patients than any. Uptake is GOOD.
This rare Hurthle Cell Carcinoma will eventually stop taking up the iodine. So what then? Well I found out this time, that other HCC patient scanning with me this week had that result. And basically, her RAI Pet scan tests will stop now. She will have a more difficult time preventing or detecting the spread of any recurring HCC.
She must become very knowledge about her body, blood work, and test frequently. These tests will not be 100% like the LID RAI PET scan. Her tests will now be every three months using xrays, CT scans, and MRIs with contrast. She was told of the clinical trials that she can choose to participate in, as well. She may never see the cancer come back or she could see it grow rapidly as it is a Hurthle Cells nature to grow aggressively. Without responding to the iodine, treatment with RAI abolition is not effective. She will have surgeries when possible and her focus will be quality of life.
Please Note, an ordinary Thyca pateint SHOULD NOT have ANY tests with contrast as it has concentrated iodine/dye that ruins the LID RAI Pet scans. I hope to follow her on her journey and learn everything that I can. If she agrees, I may be able to post updates or simply share the knowledge here. If not, I will defiantly continue to keep her in my thoughts and prayers. I will not speak of her name here.
As for my current status, I am now back on the Levoxyl and temporary Cytomel. I still cannot function at 100%. In fact, I am still numb here and there and dizzy if I stand quickly. My sons are still doing the laundry and dishes for me at least through the weekend. The doctor has me not working or driving for 10 more days after the clean scan. This is actually a good thing because I am taking 2 days now to type this blog post. I am keeping my speech short and rereading my message many times over.
As for the other folks in the Nuclear Dept with me this week are loving the regular food like me (: My first meal was a steak and it was soooo good:) There was one other person scanning this week that had to redo his abolition at a higher dose (1st was 100mc this time was 150mc). I think a lot of this repeat treatment comes from his weight and possibly not following the LID strictly.
The doctor gave him the the cold hard facts that he had to gain control of his 100lbs over weight. A person like this makes starving his cells of the iodine harder. At the least, he should have cut meat intake on his LID and he did not. In the room with us, he confessed that he had gained weight and eat well even buying bakery bread. I shake my head at this. You have one shot every 1,2, or 3 years and can't stop for 3 weeks?
I don't believe that my going vegan was the sole reason for the great uptake and results; but, having eliminated the possibility of iodine in my diet strictly, I know my scan was 100%. That peace of mind is priceless. He now has to do this all over again sooner rather than later. And I wonder if he is ruining his uptake and will eliminate his effectiveness of the PET scan sooner.
The last of the other four scanning with us was even surprised that I didn't use any lotion during the LID. She looked at me funny. I said that I was not sure of the ingredients (soy, coloring) and it does get absorbed; so I didn't. This may seem extreme or paranoid, but I assure you I have peace with my results.
So today this Veteran is celebrating that while I gained cancer by serving my country; God helped me beat it. I am coming up on 4 years cancer free, thanks to Wonderful Doctors, family, and friends. I have realized this week that I am here for the long haul. And now, if God wills it, I have 3 years before I have to see that LID or PET scanner.
Thank you to all of your thoughts and prayers and Praise God!