I had my diagnosis of papilary/folicular thyroid cancer in October of 1995 when I was 32.
By the time I got thru the insurance hurdle I finally had my near total thyroidectemy Jan 8, 1996.
Of course this date had a double whammy because it was also my only sister's 32nd b-day who was pregant at the time with her first child and my first niece. I came home from the hospital after two days of the most horrific pain and I could not celebrate Jan 10, 1996 by seeing my first niece.
First after the surgery in 1996 I had ablation with 150 millicuries of radioactive iodine. Then in 1997, 1998, 1999 I had to go off my meds and become severely hypothyroid, almost non-functional, severely fatigued, be on short-term disability from work and gain boatloads of weight.
All this just to drink more nasty tasting radioactive iodine in 10 millicurie doses each time so I could have a 1 1/12 hour whole body scan to see if my cancer came back.
Thank god by 2000 I was allowed to have a Thyrogen scan to check for any reoccurrences. No more going off the meds, this was traded in for following a super-restrictive no iodine diet for 3 weeks. Basically it is like starving yourself because you can hardly eat anything so you feel non-functional yet again.
The protocol for this is super strict. You had to have an injection on one side of the butt on Mon. and Tue. the other side gets injected. Of course the doctors refuse to due this in their office so you have to go to the hospital and get billed massive dollars a 5 minute shot. Did I mention that they forget to tell me not to eat and that I spent two full days being really sick?
Then wed you go back for a 4 millicurie radioative pill and then feel nauseated all day long instead of the nasty liquid. Then Thursday you get off from being poked or proded. Friday I had to go back and have a 1 1/2 hour whole body scan and then wehn that was done go to my endocrinologist for TSH, Thyrogolbulin Panel, Free T4 by Direct Dialysis, Thyrobglobulin Antibodies. I did this all again in 2001 and 2002.
I guess one might say I got a reprieve because I didn't have this done in 2003. But then March 2004 I had to due this all over again. I chose to spend my first spring break of graduate school doing this and then feeling like I was going to hurl every hour day. Not the way one typically wants to spend spring break from school. Well in 2004 my scan showed a 3mm growth on one lymph node in the former area of the thyroid bed. Then my other lymph nodes were all enlarged.
So I spent the rest of 2004 going for more thyroid ultrasounds, CT Scans, and MRI's and then visits to several different otlolaryngologists and other endrocrinologists. I repeated all this again in 2005 and my lymph nodes were back to normal and the growth was gone. They concluded that my lymph nodes were enlarged in 2004 because I had not recovered fully from a bout of strep and then bronchitis when I had the tests in 2004. DUH that is what I said to the doctor at the time and he totally discounted me!!!
On 6/28/06 I went to my endocrinologist for my annual checkup. The goods news is the latest research has concluded that one can now have thyrogen injections on Mon and Tue, the 4 millicurie iodine scanning dose is no longer required nor is the 1 1/2 hour whole body scan.
Had another thyroid ultrasound 7/8/06 and thyrogen injections 7/10/06 and 7/11/06. Remember the boatload of weight I gained in the late 90s from the thyroid withdrawal scans. I lost almost all of it but 20lbs. I switched from synthroid after 5 years and have been on Levoxyl for the last 5 years.
Fast Forward to March 07 and the body breaks down and involves Orthopedics, Rheumatologists, Neurologists, Chiropractors, Endrocrinologist, Otolaryncologist, Urologist and the weight keeps skyrocketing.
April 2007 cervical lymph nodes are enlarged. Ultrasounds can't tell if they are cancer. ENT says they are to small to biopsy. May 2010 and the lymph-nodes are still with me and the docs still can't tell if it is cancer and they are still to small to biopsy, but they are growing.
Hello my new friend Ms. Kidney tumor has embedded herself Dec. 2008 on my right Kidney. Well not to be outdone she decided to have a twin who has embedded herself to my left adrenal gland July 2009. My left twin as of July 2010 is growing on my adrenal gland, docs can't tell if this is cancer either,
I am convinced this has caused many of my other health problems.
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