In January of 2018 I had the flu. By the middle of January I had hives. I had had hives before so I thought they would go away. Instead, they got worse and worse and the itching was horrid. Every inch of my body had the appearance of being scalded. By February I had seen my Primary Care who assured me that they would go away on their own and to use Calamine lotion to ease the discomfort. I had been seen by a "Holistic Practice" that promised to treat the causes instead of the symptoms. Two weeks after my initial consult I returned to get my rest results and the P.A. couldn't remember my name... certainly forgivable when they see many many patients... but even after our conversation and a recap of the symptoms, she still had no clue.
In March I consulted an Allergist. He did a full battery of tests and blood work and determined that I was "sensitive" to grasses and leaf mold. He prescribed Claritin and said to come back in two weeks. Every two weeks he added another antihistamine and by the end of May I was on Allegra, Claritin, Zyrtec and Benadryl and felt worse than I had in January.
I have always believed that we are our own best advocate and continued searching for answers. I found that all of my symptoms seemed to point to an issue with my thyroid, which didn't really surprise me since so many in my family have had thyroid issues... but it took some serious digging to discover the connection between Hashimotos and Urticaria (Hives).
My next visit to the Allergist was my last. His only suggestion was for me to begin weekly allergy shots. I burst into tears. I reminded him that we had not confirmed that the hives were caused by an allergy and all the antihistamines left me feeling like a zombie. He just looked at me. I never went back.
I made an appointment with an Endocrinologist but she couldn't see me until the end of June and somewhere in the first week of June I had a break out that left me panicked. I called the "Holistic" practice to see if they could see me. They asked that I bring copies of my most recent labs. When I got there they took one look at me and then a look at the labs and said, "You have Hashimotos. Didn't the Allergist mention the Thyroid antibodies?" I replied that he had said that it was a lab value that he had decided we would "watch".
That day I received a shot of Kenalog. It worked to reduce the itching and swelling for about 24 hours and then back to Hive Hell.
The appointment with the Endocrinologist gave me hope. She ordered an ultrasound of my thyroid and started me on Levothyroxine. By this time my hair had been falling out for six months and seeing my scalp through what hair was left was almost as distressing as the itching. I decided to get it cut very short to relieve any possible strain on the follicles. We started on a very low dose of thyroid meds and gradually increased the dose through the summer. Fall came and then Christmas and I was down to Allegra and Claritin to ease the hives but my hair was still falling out, I was so tired I had to force myself to complete even the simplest tasks, my weight was steadily going up and I felt like I was ALWAYS in a fog. By now my joints ached and my skin was dry and I was cold all the time.
I had done research and found several Facebook groups dealing with Hashimotos. Many of them had switched to a natural thyroid hormone and felt that it had made a tremendous difference in how they were feeling. In January of 2019, I started taking Armour thyroid, a product made from porcine ( pig ) thyroid glands. Of course we had to adjust the dosages and do periodic blood work to see if we could get the numbers into an optimal range but I was still feeling crumby, gaining weight and losing hair. The blessing in all of this though, is that the hives seemed to be under control.
Medicare complicates most things and coupled with Covid and the world shutting down, 2020 left me pretty much on my own. I continued to read and adjust my meds and keep a bottle of Allegra always within reach. I had my annual mammogram, bone density test, a swallow test that precipitated an endoscopy and a colonoscopy. My annual physical was deemed a "Welcome to Medicare" visit and consisted of a dozen questions to test my mental acuity a walk across the floor to be sure I was steady on my feet. The million and one issues I had been dealing with were not included in the Wellness Check and that was all that Medicare would cover.
I left the office frustrated and annoyed and as soon as I got home called my insurance company. "Of Course you are entitled to your annual physical. Of course that includes blood work." I then called my Primary Care's office and discovered that they had entered the Insurance incorrectly and they would correct it. Two weeks later I went back for my annual physical, which of course, concluded I was fine with the exception of Hashimotos. I asked if he had any insights into treatment options other than thyroid hormones and periodic blood work, a way to address the autoimmune aspect of Hashimotos and he said, "No."
In April of this year I started reading about the incredible results people were having with Functional Medical Doctors. They had discovered that the standard of care for folks with Hashimotos was simply inadequate and there had to be better answers than a blood test that only told a fraction of the story and a change in the dosage of one of the three drugs regularly prescribed.
My first visit with The Center for Advanced Wellness was a conversation. For the first time ever, the Practitioner asked questions, listened, was educated on my concerns, offered suggestions and recommendations and hope. She does not accept insurance for her services, and makes it very clear that office visits are paid "out of pocket", but she ordered very thorough labs that were covered. I have never had such a complete and inclusive history taken. My next visit... my follow up, is Wednesday. I had additional family history and personal physical, mental and emotional questions to answer and have been keeping a food log. I did a 24 hour iodine test and on Wednesday she will go over all of the results and we will formulate a plan.
Today I went shopping for a new shower curtain. After painting the vanity white, the white shower curtain and towels, bath rugs and lid cover were just too white. I shopped all over town for a navy blue shower curtain. Apparently they don't exist and neither do lid covers. All of that was an adventure and I finally decided new towels would have to do until I could find the other items on line. I had put the old shower curtain in the washer before I left and moved it to the drier when I got home. A cup of coffee and an hour later I pulled the shower curtain from the drier and to my astonishment, realized that this was not the curtain I had thought I had on the shower at all. It was white but not ruffled... the ruffles are the reason I had decided to change, along with the color. The shower curtain that I thought I was replacing was the one I replaced last year. How could I have forgotten? How could I look at this item every day of my life and not really see it????? Do I have early onset dementia? Have I lost my grip on reality? My mind?
My visit with Julie can't come soon enough. I have heard so many people talk about "brain fog" but I hadn't really grasped how serious and how frightening it could be.
After Shannon's accident I used to get lost driving to the grocery store. I would look at work document and not be able to make sense of it....like trying to read a foreign language. So I know that these things happen. Over time, it passed. Now here we are again.
There are so many illnesses that so many people are facing that are invisible. My heart goes out to them and I find I have so much more understanding and compassion now that I am faced with similar issues.
Getting older is definitely NOT for the faint of heart !!