I have a constellation of autoimmune diseases, which I am treating in various ways, for the most part through diet, exercise and alternative therapies.
I have learned a lot in the past 4 years, and plan to use this blog as a way to share what I have learned, as well as what I experience each day while on this strange and curious journey. I don’t claim to have any answers, but hope that sharing my experiences will be of some use to me and perhaps also to you.
My experiment continues…
I switched to Tirosint, certified gluten-free, and feel it is better. Have gradually increased the dose to 100 mcg, which is supported by blood work and how I feel.
After 4 months with no thyroid meds, I am back on 50 mcg of Levothyroxine a day. My thyroid blood work the end of December didn’t look good, although I felt fine. Add to that the outside chance that the wonky stuff going on with my sense of smell and taste might be related to the thyroid and it was pretty easy for the NP to convince me to try meds again for a while.
I have been off my thyroid meds for 25 days! It took over a year of stepping them down, blood work, stepping down again, over and over. It went like this: 124, 112, 100, 110/88 alternating days, 88, 88/75 alternating days, 75, 75/50 alternating days/ 50, then spaced the 50 out to every other day, then every third day & now I’m DONE – except for some final blood work in another few weeks, to assure my NP that it’s all good. She’s been very supportive, if skeptical throughout this. Letting me drive, but wanting blood work at every step along the way. After 6+ years on thyroid meds, I’m delighted they are a thing of the past! They were also adding to the edema, so I’m hopeful that I’ll see some additional changes there. PT2 noticed a change in my face this week said my eyes looked different, and when I told her I’d been off the thyroid meds, she thought that’s what she was seeing in my face.
In 2005 I was diagnosed with Hashimoto’s Thyroditis, after many, many years of chronic fatigue. My hypothyroid symptoms are well controlled with 75 mcg of Levothyroxine. I have been gradually reducing this from 125 to 112 to 100 to 88 to my current dose over the past 12 months, with the support of my Nurse Practitioner.
Iron Deficient Anemia
In 2005 I was also diagnosed with iron deficient anemia, which was treated with 3 IV infusions of ferritin over the course of a year. My ferritin levels are checked twice a year and remain normal.
My wrists continue to heal. Only occasionally are they achy or tender. I seldom even notice them any more.
Two days after my 60th birthday, June 15, 2009, I awoke with acute (acute, as in wake from a dead sleep, bring me to my knees, see stars if it is so much as moved or touched, impossible to use – on a scale of 1-10, this pain was at least a 20 for 4 solid months) DeQuervain’s Tendinitis in my left wrist, and mild DeQuervain’s Tendinitis in my right wrist. After much therapy, the DeQuervain’s is almost healed, certainly healed to the extent that it does not interfere with daily life, but not healed in that I still have occasional “twinges” or reminders that it is there, lying in wait.
Celiac Disease and Dermatitis Herpetiformis
February 2010, I was diagnosed with Celiac Disease and Dermatitis Herpetiformis (DH). Both are well controlled with diet, as long as I can keep from getting food that is cross-contaminated from gluten.
RA is still in remission. I’ve had baseline x-rays of hand and feet, which show no joint deterioration. Lower back shows “age appropriate” deterioration, but not active disease. All joint stiffness, aches and pains have improved from DX. Over-doing and weather changes, as well as gluten zaps still cause minor flares.
May 2010, I re-injured my left wrist. Searching for a new Physical Therapist led me down a short path that ended with a diagnosis of Rheumatoid Arthritis. After MRIs, repeated lab work, 3 extensive exams and a conversation that lasted over an hour, my Rheumatologist agreed to let me try alternative therapies. After 3 months, my RA was in remission. She continues to follow my progress, and continues to be convinced I will eventually need to go on drugs. Although I will acknowledge that I may have to eventually try her treatments, I am hopeful I can regain my health using alternative therapies, diet, and exercise and will continue down this path for as long as it continues to work.