I'm 52 and have always been healthy. I did have a racing heart in my 20s and was told I had mitral valve prolapse.
I was always thin and a bit "hyper" as a child, a few broken bones, but that's it.
I had something happen to me back in 2005 that "set off" a severe inflammation syndrome that won't stop. I had used Zicam nose spray after a stretch of a bad cold, trying to unplug a persistent stuffed nose. The spray went down my throat and literally felt like it burned a hole in the back of my throat. I keeled over in pain. The next day I felt the sides of my neck and shoulders tighten. I went to an urgent care doctor (we were new to the area). They gave me one 7 day round a antibiotics but it didn't help. The inflammation-like pain increased. I felt burning hot at the base of my skull and down my spine. My whole body felt like I was on fire. I went to a new primary. My right thyroid had grown to be very visible on my neck in this short time but the doctor didn't believe me, thought I'd had it longer. They ordered CT scan and said I had a multinodular goiter. Uptake scan showed high thyroid. But blood test kept coming back within "normal" range. My TSH was .77 at the time.
I had severe tremors, pounding heart like it was coming out of my chest, dry eyes, increased appetite but no weight gain, a poisony feeling and a multitude of other strange symptoms. I didn't have a fever but felt very hot and felt close to death. Emergency visits found nothing.
There was a lot of confusion. No one could explain the pain I was in and I was passed off as being "stressed". I became disabled from that point on. I went to see an Endo 3 months later who didn't explain much to me but suspected "thyroiditis". I was sent to a surgeon, but I needed other opinions. Long story, but I ended up having repeated episodes of "thyroiditis" after the slightest cold with severe, excruciating pain all along my neck until I found a surgeon to remove the right thyroid in 2006. My racing heart stopped and the episodes seemed to calm down for a while but are increasing again. I was never treated for thyroid until recently when a new Endo I saw said I have an inflammatory thyroid condition. He believes the blood range for thyroid is too broad and that I am hypo in spite of a current TSH of 3.2. I'm taking T4 (Levothyroid) 50mg and T3 ( Cytomel?) 50mg but it's only been a few weeks. He is attempting to stop the flare ups.
Since this began, I developed a sensitivity to sugar of all kinds, even honey. I can't have it at all, even in some fruit or the pain increases and my throat, tongue, swells. I also developed hypoglycemic systems with wheat or carbs. I will get very light headed and dizzy. My gluten sugar levels were tested and I was fine. I am not diabetic.
I used to get headaches when I cried but those stopped when the right thyroid was taken out. Interesting, isn't it? I get continued pain in the occiput area of my neck on the right side where the thyroid enlarged. I will get an itchy skin colored rash too in that area but I don't think the rash is related to sugar. It seems to come with the flares ups. I don't understand the connection with all this but I know it's all connected.
My question is: What is causing what? Could the thyroid disorder be messing with my insulin levels? And making "allergic" to things I've never been allergic to before? Will the thyroid meds help with that eventually? Could there be something "else" setting off the thyroid, like an inflammatory nerve damaged by the Zicam? Could it be that nerve is set off by a cold virus or when I cry? My throat swells up still when I cry. I do know Zicam has damaged nerves from research. What kind of doctor should I see? I don't think I've had enough testing in the right areas..ie, nerve studies, orthodpedic, etc. The concentration has been on the thyroid and tons of blood test which are all "normal" except for mild anemia, and neuts will show virus depending on when the tests are done.
I'm sorry this is so long. My issue is waaay outside the box, I know. I really want my life back. Doctors are perplexed and keep giving up on me. I keep hoping I'll find someone up for the challenge. I really want to be well again.
Thank you for reading this.