Alison’s Story

Site created on September 5, 2017

Welcome to my Caring Bridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

 I knew I had something wrong with my thyroid.  I've had symptoms for years, but my numbers were and still are, after knowing what is wrong... "normal" to Kaiser.  But I wasn't normal, my symptoms got progressively worse and in January 2017 I knew something was really wrong with it.  I tried to get a full panel thyroid and some other tests done which they wouldn't.  And  my regular hormone numbers we're fine.  So then we just began chasing the symptoms to rule out big stuff........Vertigo, palpitations, hair falling out, fogginess,  back weakness, ear/jaw pain,  breathing problems, pneumonia, and many other things along with low Ferritin, vitamin D and Iodine.   I just wanted answers for the symptoms....and thankfully I finally have them, so now I can face them.  Thanks for being on the journey with me.
**Have your family checked  if you have thyroid issues and also check for Hashimotos  autoimmune antibodies. My son also came back positive!!
**Please also notice the Celiac disease connection posts from September & November 2018 updates

Newest Update

Journal entry by Alison Griffin

It's been one thing after another since July! My foot surgery July 8th was a slow process in healing as he had to cut on the bottom and top. He had never seen what I had before!  I had a nerve neuroma he removed, but he also took out a thumb sized piece of spongy tissue deep from the bottom that that was causing so much pain since January. Pathology could not determine exactly what it was. I was off my feet with no weight bearing for 6 weeks until August 21st! Now at 13wks, it's better finally. These last 3 wks it has not hurt as much, but I still have a limp as my leg gets stronger.

About a week after foot surgery  I started to have a really strong pain in my left cheek. Especially when I ate. I thought it could be TMJ but 2 weeks later I started having a drainage by my upper back molars on that side. I looked up what that could be and figured it could be a parotid salivary gland infection. My doctor gave me an strong antibiotic but that never helped, 5 weeks after the left my right started hurting the same way, then started draining also. Three weeks later there was a point I could barely swallow stuff as my mouth became drier. My cheeks only felt better to rub and I could literally feel saliva squirting into my mouth when I did.

I went to my thyroid surgeon. She said it sounds like damage from the radioactive iodine from 5 months before.(And I got more than necessary). There really isn't anything I can do to fix them, but rub and try to help squirt saliva out. Or have a temporary surgery to clear them out occasionally.  Basically my mouth starts to water but it doesn't release it properly so it hurts. Thankfully, the last few weeks have been better, less painful and more moisture. Which will help against cavities. Hoping they will hang in there.  Another side effect to my thyroid cancer and hormones is that it's now officially put me into menapause beginning at 44yrs!😯

I began to prepare for more cancer testing these past few weeks. I am back on the awful low iodine diet, and basically not being able to eat much of anything. It has been two years August 2017 that they finally found what was wrong with me after I was saying my symptoms were thyroid related. They thought they got it in time. That September I had my surgery and thyroid removed without needing to take out lymph nodes. Just to have it be found in my lymph nodes a year later last November and then Radioactive iodine in January. My June testing showed the lymph nodes clear, but there still appeared to be something 1cm in my thyroid bed that they found last November. And it showed up as thyroid tissue during my excessive radioactive iodine treatment. My nuclear  medicine doctor said it should have "eaten away" any excess thyroid cancer and all tissue by now. Although another doctor said it could be scar tissue, but it wasn't there 6 months after surgery. 

This week I have been testing again, more bloodwork and another ultrasound which really hurt this time as they pushed on my neck. Today I took another radioactive iodine pill ☢ for my scan tomorrow. This is not the same as before, with weeks of required isolation after. Just a couple days of limited exposure. Then we will see what "lights up" and the next steps if necessary. 

Prayers requested for my already struggling salivary glands as this will be sucked up by them with more possible damage. I also finally had a mammogram this week while I hung out out the hospital every day. I had a questionable one 6 years ago...so hoping this can be cleared without opening another can of worms or excessive testing again!! Prayers for comfort and endurance for our to continued dealing with this nuisance that will never seem to end! I'm pretty calm for now, but it's getting old. I meet with my endocrinologist next Monday, October 14th for results. Thanks for all your support for our family.🥰
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