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Why do I regret RAI...oh geesh, let me count the ways
I was lied to when diagnosed, told I was to sick for the meds, would have to be surgery or RAI and was then scared out of the surgery.
I was told how *safe* RAI is. The day I took it, when the doctor came walking in, covered in a lead apron down to his clothe covered shoes, the lead gloves almost up to his shoulders, a mask over his face, a hat one that had a visor to cover his eyes, carrying a lead container with lead lid, handed it to me and said, take the lid off, put the pill in your mouth from the glass tube and swallow with this water <he gave me>...
...well I took the lid off, put the pill in my hand, looked at my hubby <who was allowed to come in with me> holding the pill in my hand, THEN I decided to start asking questions, all the while waiving my hands around...I really should have put the pill back in the test tube and put the lid back on when the doctor came unglued and started yelling at me to take the pill...then it was "take the damn pill" then, as he was pushing my hubby through the door and following him through it screaming at me to TAKE THE G_D-DAMN PILL"...I should have known then it wasn't a very safe thing.
Instead I took the pill, I had already pissed off the doctor so I better do what he says. He was not happy with me...oh, btw, he died a few years ago at age 57 due to cancer brought on from radiation poisoning.
That was June 7, 1996. On July 23 or 26 I crashed into hypOhell. The next 6 months were a stuggle as I put on 62 pounds, my doctors running only the TSH and telling me the pain I felt was not my thyroid. I kept believing them for 4 years, it wasn't my thyroid, all the while I ended up gaining another 28 pounds, a whole other person on my short frame...then the depression that comes with being left hypO became so bad I became suicidal.
On January 10, 2000 I was writing my good-bye letters to my family, when I got to the one for my 3 yo grandson I just sobbed and couldn't do it. That is the day I began learning about graves disease.
That is the day I began firing doctors <2 endo's, 2 primaries, 1 ophthalmologist to date> and finding doctors who would do the proper labs, help me to feel well and not be in pain, caused from being hypO.
RAI has caused my digestion system to slow down, it has damaged my salivary glands, though not as bad as it has other peoples, but then, it still could be.
RAI has ruined my metabolism. I have had to have my gall bladder removed due to lots of stones. I have had a cardiac event, due to hypO, though the doctors won't admit it, my problems fall into the categories of the hypO/cardiac studies of the last few years.
My hair, I have lost over half of it. I stuggle every single day with the pain because, even knowing all that I know, able to read my labs, being proactive in my care, we have been unable to get my thyroid levels stable to where I feel good again. I have some good days but lately, they have been few and far between.
I'm tired of crying at the drop of a hat, I'm tired of cleaning my hair brushes out every single day and looking for bald spots, I'm tired of the pain in my feet, my knews and my muscles; I'm tired of my dyslexic typing a clear sign my levels aren't off.
Had I to do it over again, I would punch any doctor that told me RAI was *safe*...punch them right in the face and knock their teeth out and hope they swallow their tongue so they can never utter those words to anyone again. These are the same doctors who also lie about 'that one little pill a day is all you will need to feel great'...I am still waiting for that one little pill a day. At one point I was on 15 different pills/doses of thyroid medications to keep me feeling pretty good back then.
Instead, I would stay on atd's forever if necessary...a small very tiny maintenance dose every day and keep my thyroid so it coulc continue to do what it does best. Make ALL of the different thyroid hormones it makes for our bodies plus calcitonin. THAT one little pill a day makes a whole lot more sense than trying to replace what our thyroids make with one synthetic pill that our body is suppose to convert but never seems to do it right again.
Dietary changes, lifestyle changes, reducing stress, all of these things will make the ATD's work much quicker on your body to get you to that low maintenance dose and feeling well again.
Something, diet, lifestyle, stress, something there contributed to you being diagnosed with graves disease...these changes are necessary to be healthy again.
You only get one body, one thyroid, choose wisely and take your time. Know that what doctors often call 'allergic reactions' to an atd are *usually* a common side affect of the meds...so don't be fooled.
Get the book Thyroid for Dummies by Dr. Alan Rubin, <he likes rai but the rest of the book is pretty good>...read, ask questions, know that it is YOUR body and only YOU get to call the shots. The doctor works for YOU, you are not there to do his/her bidding.
Hope some of this helps. Unfortunately, my story is not all that different than many others who are post-RAI...it happens more often than the medical folks will admit.
Oh, one more thing, I found out in October of 2004, our family doctor began doing thyroid labs on my husband. I asked why, he told me and my endo confirmed, it is common knowledge in the medical field that the spouse will eventually become hypOthyroid due to our RAI treatment. I was ticked like never before. So, if this is true for our spouses, what about our children that we are told we can hug again after 3 days?
Gofman says "There is NO safe dose of radiation" I believe his is absolutely correct.
I was RUSHED into RAI and have regretted it every day since then...
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