December 20, 2016
I saw Dr F, my endocrinologist today. He was apologetic about how long it had been since appointments and I told him the hoops I had jumped through to try to get in to see him. He said they had had issues with the receptionist, that were resolved now. Nevertheless, I made sure to book my next appointment (April 26), before I left.
He was pleased with my progress, but said my thyroid and Addison’s labs still didn’t look good. We went over the last years history and I told him what I was planning to, which was that all the other specialists I’ve seen blame Addison’s or a fabrication of my mind. He said, with how my symptoms are presently, that Addison’s and hypothyroidism could be the cause and that it may be that I had a really bad crisis, followed by smaller crisis and poor Steroid replacement. It somewhat contradicts what he’s said in the past, but my symptoms were far more severe then. I’m not quite sure what to think in that regard. I really just want to hold on to the hope that I don’t have any more diseases.
We talked about steroid options. I had wanted to try prednisone instead of hydrocortisone. He listed a number of reasons he doesn’t like prednisone, but listed to what I was asking. In the end we decided that I will try a higher dose of hydrocortisone for a month, then will switch to prednisone for a month to see how I feel. In the end he said he’ll go with what I decide, but offered his reasoning. Really, it’s about as perfect a doctor/patient exchange as I could ask for. He thinks I have an issue with malabsorption because of Celiac disease, which could affect why I need a higher dose. He wants me to be very liberal with stress dosing, and take extra before a long walk or my aquasize class. When my husband and I described my crashes, Dr F thinks they happen because, even though I’m no longer pushing my body to extremes, I still push until I crash. I both have daily or weekly low cortisol times and also don’t let my body fully recover from those times.
He did advise me not to go back to work yet though. He said we know how I feel now, and we’re trying to improve it with medication experimentation, it’s not the time to add in another variable. I understand that and, as much as I don’t want to, have to agree. Truthfully I’ve been very scared of working. Even for a few hours I’ve been fearful of just having to wake up and shower, without having the luxury of time to lay down afterwards.
I left feeling very pleased and hopeful. Again though I feel like I still don’t give Addison’s disease the respect it deserves. The chest pain is still a nagging thought though. It still doesn’t seem to be typical, even though I should have come to loathe that word by now. He reiterated how complicated and unique my situation is. Because of the internet and the ease of finding a support system it doesn’t seem that rare to me, but it is. 1 in 100,000. 2 of us within the city limits.
Sometimes when I look back on this saga I’m amazed that I’ve made it this far.