This blog is mostly for sharing parenting thoughts and fun life moments, but so many of those in my friend network have recently shared their thyroid stories and I like the idea of benefitting from each others' experiences. So, here goes.
It started 13 years ago when I began feeling constant, mild throat pressure. I spent two years going to ENT doctors who tried everything from muscle relaxants and acid blockers to steroids and antibiotics, finally one of them performed surgery to remove my lingual tonsils. No change. My labs remained normal. They didn't know what was causing the pressure, but everything they could think of medically tested fine, including an MRI and CT scan. It remained a mild annoyance. When I moved to the Seattle area, my new primary care doc ordered an ultrasound which discovered thousands of tiny, "autoimmune" thyroid cysts. I put autoimmune in quotes because I have no thyroid antibodies. My lab work was still fine, the throat pressure hadn't changed, but at least I knew what was causing the feeling. My doc said this was a case of waiting to see what happened because my thyroid was working well. So, we have chronic throat pressure as symptom number one.
About two years ago, hair stylists started mentioning that my hair was falling out and my husband started noting handfuls of hair on my back after I combed it each morning (symptom number 2). My hands and feet got more and more cold, and I saw bluish toes for the first time last year. I was told I had Raynaud's and to keep warm (symptom number 3). I'm not sure when I started having this odd head ache / sick feeling, but it has gradually progressed to occurring several times a week, although it always resolves with sleep. I have also had significant difficulty getting to sleep and frequent wakening (although I fall back to sleep easily). (We'll make that symptoms 4 and 5)
Six months ago, my doc said my thyroid wasn't officially low, but we could try some T4 to see if it helped. It didn't. Over the last few months, thanks to friends reports (http://www.dianahsieh.com/blog/2010/01/thyroid-update-desiccated-thyroid-and.shtml http://sparkasynapse.blogspot.com/ -posted on - OEvolve- and more recently http://reepicheepscoracle.blogspot.com/2010/02/hypothyroidism-and-hashimotos.html), I've been delving more deeply into the research and, now, I think I've been dealing with thyroid issues for at least 15 years. I have read both Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment and Iodine: Why you need it, Why you can't live without it as well as the findings from multiple respected blogs. I did a temperature trial and noted that my temperatures were highly variable (not just within one day, but from day to day) and always low (symptom 6, last one).
I wrote my doctor a detailed letter of the trial I wished to undertake which included both desiccated thyroid and cortisol. She refused to write a prescription for the cortisol. I am afraid to take the desiccated thyroid without the cortisol because adrenal issues could arise (link). My lab results indicated freeT3/freeT4 both low normal and I continue to lack any thyroid antibodies. I have been taking Iodine which seemed to make my temps warmer for the first week, but hasn't done anything since. I think I may up it from 12.5mg to 18.75 (another half tablet).
Considering high cortisol was documented, I am now primed with multiple questions for tomorrow's visit to the endocrinologist. Based on my research, I want to get a ReverseT3 test and repeat freeT3 to see if that ratio indicates an issue. I want to get an iodine loading test to see if that is a significant issue and the saliva cortisol test which has four collection times since cortisol can vary so much throughout the day. Finally, I want to get the opinion of a more mainstream doctor and likely, I will seek a second opinion from a doctor whom I know to be more focused on using compound pharmacies for treatments outside the norms.
So... that's my plan! I'm sharing another data point and I'm hoping that I'll be reporting back with a full all's-well report. This has been a stressful two months of research and especially the more frequent illness feeling. It's very exciting though to be aware of the treatment tools which will hopefully resolve the issue :)