March is National Autoimmune Awareness Month. The song that doubles as my blog title for this post and the band who wrote it, Foghat, really describe this topic: Thyroid disease, specifically, hypothyroidism or Hashimoto’s disease – slow and foggy for sure.
What is that exactly? Well, the thyroid gland is a butterfly shaped gland that sits at the base of your neck. It primarily regulates metabolism, but affects many parts of your body, like your digestive system, liver, kidney, and bones. Lots of people have thyroid problems, but Type 1 diabetics have a higher rate of thyroid issues, specifically hypothyroid. Like Type 1 diabetes, this is an autoimmune disease. Autoimmune diseases don’t like to be alone and they invite their friends over. Unfortunately, they are always unwanted guests!
Not only do I have Type 1 diabetes, an autoimmune disease (unlike Type 2), but I also have hypothyroidism. It was a long struggle to get that diagnosed. Roughly 20 years ago, I had all the classic symptoms, which include unexplained weight gain, unusual fatigue, dry, itchy skin, trouble sleeping, memory loss, and dry brittle hair. Despite all those symptoms and the fact that I have Type 1 diabetes, every single doctor I went to would run a thyroid panel and declare me within normal range. I was within “normal” range too. I was just at the very top end of it, but no one bothered to say, hey, maybe something is going on here after all. They all just looked at the test results and told me there was nothing wrong with me. I knew there was though. I felt awful. I finally did find an endocrinologist who treated my symptoms. After starting on Synthroid, my levels came down to a midline of the range and where my body feels best. All my symptoms went away within about 2 weeks and I lost a good 15 pounds that fast too.
That endocrinologist, whom I loved and went on to guide me through two healthy pregnancies, didn’t treat me like a number on a page. That’s the key. He treated the patient, me, in this case. He saw my symptoms and listened to me. My thyroid was low and I needed help. Looking back, it’s really scary to know that many medical professionals only look at numbers. I had seen several doctors and no one really spent that much time with me. They just sent me off for a blood test and told me I was fine. That’s incredibly frustrating and depressing for a patient.
Another point on thyroid disease: there are generic drugs available to treat low thyroid. Any endocrinologist I have ever seen tells me that you get better results if you use one brand. It doesn’t really matter which one, just stay with that one. I use Synthroid, for example. The generic versions aren’t consistent in their compounding I’ve been told. This is a drug that needs to be in your system continuously and kept at a particular level. The generic drugs aren’t always the same, so aren’t able to provide the ideal level of consistency. I’m lucky that I can afford to pay $35 per month in order to get the brand
name drug. I’m sure plenty of people need to, or simply opt to, fill the generic drug over the brand name. They may or may not be told the pros and cons of generic vs. brand either. It’s another case of not getting the optimum care because your insurance company won’t cover what your doctor thinks is best for you.
My daughter, who has Type 1 diabetes AND hypothyroid, also has Celiac disease, yet another autoimmune disease. Interestingly, she and I hardly ever get sick with a cold or the flu. (Knock wood.) She often jokes that our immune systems are just that good. So good, in fact, they just keep on attacking things, unfortunately sometimes they are things we actually need! Celiac disease means she can’t digest gluten, which is a protein in wheat, barley, and rye. She has to be very careful about her diet, can’t have anything made with those grains and needs to avoid cross contamination with them. She didn’t have symptoms related to Celiac, but her pediatric endocrinologist routinely tested T1 kids as it is not uncommon to have both. My daughter was off the charts for the antibodies associated with Celiac disease. In addition to seeing an endocrinologist, she now sees a gastroenterologist as well.
Lastly, my autoimmune system went really crazy on me when I was about 25. I had what I thought was the flu. It turned out to be Strep throat, but I didn’t know that (since I rarely get sick) and did not get antibiotics for it. It eventually resolved itself, but I was left with little red dots all over my legs and feet from my knees down. I felt fine. It looked like a rash, but the bumps were not raised, nor were they itchy. Since I’m a T1, I was checking my blood sugar, of course, but having trouble stopping the bleeding. I finally went to my endocrinologist at the time who looked at my legs and saw my blood not clotting properly. Those red dots were broken blood vessels. She immediately admitted me to the hospital. Turns out my autoimmune system kept on destroying things after it took care of the Strep bacteria.
Unfortunately, it started attacking my platelets and my blood was not clotting, which means you don’t stop bleeding once you start. I was diagnosed with ITP, or idiopathic thrombocytopenic purpura. That’s a big long name for we have no idea why this is happening. The first step was making sure my body was still able to produce platelets, which involved getting a sample of my bone marrow. I can still feel the drill into my tailbone to extract that sample. Not fun is an understatement. Fortunately, my body still could produce them. I was then sent off to an oncologist who put me on steroids, prednisone to be exact, to jump start that production and I visited said oncologist weekly for about three months for platelet level checks and tapering those steroids down. Steroids suck, by the way, especially for a diabetic. They raise your blood sugar for one, among a host of awful side effects, so you have all that to deal with as well.
I’m really lucky that I have had no lasting complications from this bout of ITP. It’s a really scary thing. I’m absolutely terrified of Strep throat now and get to a doctor immediately if I feel like I might have it.
Our autoimmune systems are great things. They protect us from many dangers in the world, but they can also get confused and can do a lot of damage, some of it incurable for the moment at least. Awareness and early detection can make a huge difference in prevention, treatment, and quality of life. Check out the American Autoimmune Related Diseases Association for more information: https://www.aarda.org/
