[Gina]

#1058969

Hi, First of all I want to say this site has given me more information than any other I’ve visited on the web.
Now for my story.
I started getting sick in May 2011. I had a cold and my doc put me on the z pack antibiotics. My cold was going away and I starting losing my voice. My voice was hoarse for 8 months. First I was sent to an ENT which diagnosed me as having Laryngopharyngeal reflux which is acid reflux that goes up into the back of your throat and voicebox. The ENT sent me to a stomach specialist who disagreed with the ENT due to the fact that I’ve been medication to control my acid reflux for years. Since I’ve been losing weight the stomach specialist wanted me to have a colonoscopy (which I have not had yet) and and upper gi (which I had) to rule out cancer. All this time all of these doctors (PCP, ENT, GI DOC) have known my thyroid was over active. I do not understand why they didn’t connect the dots so to speak. Anyway, I finally seen an endo and he ran the typical blood work and then did a thyroid scan and Monday diagnosed me with graves disease. All I can remember about the blood work is my TSH was 0.01 I think and my T3 or T4 (Can’t remember which one it was) was 5. I am on a beta blocker called Metoprolol and have to decide on one of the 3 treatment options.
The antithyroid pills are out of the question for me so it’s RAI or surgery. I have had an aortic valve replacement which causes me to be on Coumadin (blood thinner) for the rest of my life and if I have surgery I have to be in the hospital for a few days on a Heparin drip (also blood thinner) until the Coumadin is out of my system. Heparin is a injectable anticoagulant that goes out of your system in like 15 minutes after the iv is taken out.
I am scared of having the surgery or the RAI but I know I have to make a decision.
My question is how do you feel with the RAI? Do ya get sick, does your throat go numb, can it really cause cancer? I’ve read the studies about cancer but which study do you believe? Ya know what I’m saying? Also, can you be hospitalized during the isolation period? If I have to be in isolation, I prefer to be admitted rather than be home. I also have OCD (obsessive compulsive disorder) and I will constantly wonder if all the radiation is out of my apartment. The ocd is causing me to obsess over treatment so I want to make a decision and get it over with. Oh and is your throat numb during any part of RAI treatment or surgery? My throat being numb causes me to a have a major panic attack…
The symptoms I have with graves is shakiness almost all the time. Not just my hands either, it’s my whole body but my hands are the worst. Racing heartbeat, sometimes pounding heart, I’ve lost 65 lbs., frequent urination and bowel movements and or constipation (it varies). I think that covers all my systems. Another fear I have about RAI is developing the eye disease that sometimes comes with graves. I have no eye issues at all right now.
I would greatly appreciate any comments on what I have written. God bless all of you. Gina

[Kimberly]

#1171270

Hello and welcome – Hopefully, you will get some additional responses, but in the meantime, you might use the “Search Posts” feature (in the top right-hand corner of the screen) and look for posts under RAI, radioiodine, etc. to read experiences from other patients.

For *non-smoking* patients with no active eye involvement, the latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists says that all three treatment options (RAI, Anti-Thyroid Drugs, Surgery) are equally acceptable. Smokers are considered to have the highest risk of experiencing eye complications following RAI.

As for cancer risks, one of the larger studies on cancer & RAI involved 35,000 patients who were followed for 20+ years. This study indicated no increased risk of death from cancer. However, other smaller studies have noted a slightly increased risk of specific types of cancer following RAI. Here are the links to studies that I am aware of; these specifically looked at RAI as a treatment for hyperthyroidism as opposed to thyroid cancer (which involves a much larger dose).

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

“Cancer Mortality Following Treatment for Adult Hyperthyroidism”
http://jama.ama-assn.org/content/280/4/347.short

“Increased cancer incidence after radioiodine treatment for hyperthyroidism”
http://onlinelibrary.wiley.com/doi/10.1002/cncr.22635/full

“Cancer incidence and mortality after radioiodine treatment for hyperthyroidism: a population-based cohort study”
http://www.ncbi.nlm.nih.gov/pubmed/10382695

Hope this helps!

[Gina]

#1171271

Kimberly, thanks for the information. I am a smoker but hopefully I can quit soon.
I’ve noticed that alot of people are on the antithyroid meds. My endo scared the crap outta me when we were discussing that option. He started talking about a liver transplant being a risk factor. I didn’t hear anything he said after that, lol. Besides that he was very informative about the risks and benefits of all 3 treatment options. I don’t remember some of what he said because of the state of mind I was in I guess but I have read a few things on this forum that I remember him saying after I read it.
Anyway, my point is after reading and seeing all the people taking the meds. it’s not so scary to me anymore.

[Bobbi]

#1171272

One sentence came leaping out at me in the first study you sited, Kimberly. “More than 1 year after treatment, an increased risk of cancer mortality was seen among patients treated exclusively with antithyroid drugs.” It seems to me that sentence has been overlooked? And that, if it were to be true — and I realize that these studies often show results that can never be duplicated — then any study of RAI would have to control for the length of time that anyone spent on antithyroid drugs, before implicating the RAI. I think it shows how beastly difficult it is to isolate factors in human studies.

[Kimberly]

#1171273

@Bobbi – There was a bit of controversy over whether some of the ATD patients who had been diagnosed with Cancer prior to enrollment in the study should have been omitted, but in the end, their results were included. Also, it would be interesting to see a similar study repeated now that methimazole/Tapazole is the anti-thyroid drug of choice. This data was collected for patients treated in the 1940’s – 1960s, when PTU was the preferred drug.

Definitely lots of complexity here!

[Author]

Posts