The week before Christmas in 2016, I thought I had the flu. It progressed to the point that I knew something was very, very wrong. Two days after Christmas, I went to the local Emergency Room. Luckily for me, the ER doctor ordered a thyroid panel (normally ERs do not), and I was diagnosed with Hashimoto’s Thyroiditis. I had the antibodies. Also, my TSH was 50, which should normally be between .9 – 5. The doctor was very concerned and asked me if I had not been aware of certain symptoms. Fatigue, weight gain, brain fog, loss of hair? I told her that yes, I had, but associated all those symptoms with quitting smoking which I had done four months earlier. She informed me that I needed to immediately see an endocrinologist.
Of course, I went home, went online, and began what would become my autoimmune journey. The first thing that I had to understand was what Hashimoto’s is and how I contracted it. The first part was easy – it is an autoimmune disease. Autoimmune diseases result when your immune system is overactive, causing it to attack and damage your body’s own tissues. In my case, it was my thyroid.
The second part not so much. The medical community has been unable to discover what triggers autoimmune responses in certain people. There may be (or may not be) certain reasons for these triggers – for example, a virus, a bacterial imbalance, stress, or environmental factors – but there is not a full understanding or majority opinion in the medical community. It just happens. That was what my world-renowned hepatologist informed me of five years later. But more on that later.
Back in 2016, I spent weeks researching and discovering the world of autoimmune diseases. There are more than 100 of them. Crohn’s Disease, Ulcerative Colitis, Rheumatoid Arthritis, Lupus, Type 1 Diabetes, Multiple Sclerosis, and Psoriasis are the most common. Over 50 million Americans have one or more autoimmune diseases, with approximately 75 percent of those being women. Autoimmune disease diagnoses have dramatically increased in a relatively short period of time. When diagnosed with one, a person will normally keep racking them up with an average of five autoimmune diseases affecting them during their lifetime……. a lot of bad news to be delivered after ringing in a new year.
During this time, I also completely changed what I ate and started the Autoimmune Immune Protocol diet. (Except for giving up coffee. I can’t ever give up coffee). It is recommended for those afflicted with Autoimmune diseases. Realistically, it is how we should eat. Whole foods with an emphasis on fruits, vegetables, and certain meats. Removing allergens and foods that cause inflammation. Inflammation – an immune response – must be kept as low as possible.
The endocrinologist that I began to see was brilliant. Speaking directly, he informed me that it would take my body at least one year to recover from the damage that had been inflicted upon it. That Hashimoto’s – like all autoimmune diseases – is uncurable. That I would need to take medicine for the rest of my life. That because of my late diagnosis, I was also in Adrenal Fatigue. But, and this is the important part, he told me that I would be just fine once we had it under control.
Dr. Fellerman was right. It did take a year before I felt normal. The Synthroid – the usual prescribed drug which adds the hormones that my thyroid can’t now produce – worked well (although I am a bit of a special case as I have to take split doses) and everything was running along smoothly for years. Now and then, a little adjustment to the medicine, but overall, I forgot that I had a disease. The Hashimoto’s was completely under control. And then…
In late June of 2022, I was becoming more and more tired. I had lab work done. It wasn’t my thyroid. My levels were perfect. Over one weekend, I noticed a change in the color of my urine and developed sharp pains in my abdomen. On Monday, I went in to see my GP thinking that I may have had a bladder or UTI infection. She performed a urinalysis test in the office. Everything was fine. She ordered blood work, and I had it done that day. The next morning, my doctor called me and said that I needed to see a hepatologist immediately. My liver enzymes were at a very dangerous level. She also ordered a STAT ultrasound on my liver. She thought that I had Autoimmune Hepatitis. She was right.
My liver enzymes were in the 700s and 800s. (They should be below 35). I got in to see a Gastroenterologist who specialized in liver disease as I organized an appointment with a hepatologist. I knew by the look on his face that the situation was dire. And it was. I later found out that mortality would have been three months had immediate therapy not been introduced. The gastroenterologist placed me on the highest level of Prednisone possible to “put out the fire” as he described it. It worked and within two weeks, my enzymes were back in the healthy range.
He also ordered tests to distinguish whether, in addition, I had Hemochromatosis. An autoimmune disease that affects how the liver processes iron. Prior blood work showed that I had Autoimmune Anemia. Given my overall autoimmune issues and my Irish ethnicity – and the fact that two of my aunts and one of my uncles have it – he wanted to rule it out. Lab results and a liver biopsy came back as pure hepatitis. Although I do have a marker for the “Celtic Curse” as Hemochromatosis is also nicknamed.
The gastroenterologist helped me manage the disease until I was able to see my current hepatologist. Now, I have almost completely been weaned off the Prednisone (although Budesonide has been also added to my daily regimen – I will need to take it until I have been in remission for 18 months). The liver, unlike the thyroid, is a little more difficult to control. But the good thing is that eventually I will reach remission and stop taking drugs in their entirety. Until it flares up again.
Why am I telling this story?
There are many reasons. The first is to bring these conditions into the light. Tens of millions of people suffer from autoimmune diseases, and the number is rapidly growing. These diseases are not evident from the outside but wreak havoc on the inside. The conditions themselves need to be monitored. The symptoms come and go. Medication doses are changed. Sometimes it is akin to being on an autoimmune merry-go-round. Pair that with the at times brutal effects of the pharmaceuticals used for treatment. For myself, it is being in states of tachycardia for weeks on end, disrupted sleep, and severe headaches among others.
Another reason to tell the story is to stress the importance of taking notice of your DNA. Most autoimmune diseases have markers. Lupus, Hashimoto’s, Type 1 Diabetes, and Autoimmune Hepatitis among them. Also, family histories. Hashimoto’s, as it turns out, does run in my family. And I have it. Hemochromatosis does as well. I only have one marker. Autoimmune Hepatitis does not. I am the first person on either side of my family’s medical history for it to have been triggered.
And take notice of what your body is telling you. Autoimmune conditions are tricky. Sometimes they are silent, or symptoms can be attributed to other things. Looking back, I had symptoms of Hashimoto’s, but I just didn’t compute them to a thyroid issue. I didn’t have the symptoms of Autoimmune Hepatitis (right up until the diagnosis itself) and felt fine. Except for being more and more tired, which I initially contributed to my thyroid. However, after swimming in the autoimmune sea for so long, I should have known something was up when the fatigue increased.
Reason Number 3? Diet. Of course. This pertains not just to autoimmune diseases but to health overall. And I don’t just mean skipping the fried chicken and laying off sugar. It is undeniable that the food we eat today is not the same as in the past. GMOs, pesticides, hormones – the food that your grandmother fed to you is now a mere ghost. Organic foods may be expensive but, in the long term, medical bills are much more so.
The first thing that each of the specialists asked was, “Do you eat gluten and/or wheat?” Why? Because they are known to cause inflammation. They each also tested my levels of Vitamin D. Why? Because this vitamin fights inflammation. And, with autoimmune diseases, as previously said – the goal is to reduce inflammation to lower the immune response. Even those without autoimmune diseases benefit from lower inflammation in the body.
The environment is another factor that can trigger autoimmune diseases. Of course, there is not much that we can do about our environment. The air that we breathe. The source of water that we drink. The best thing to do in this arena is to try and protect as best as possible. I now only drink glass bottled spring water. I use an air filter to try and clean up the air that I breathe. By the way – although allergies are not technically classified as an autoimmune disease – they do trigger an immune response as well. The goal is, of course, to eliminate as best as you can these responses.
The final reason to tell this story is to inform anyone who has recently been diagnosed with an autoimmune disease not to be downhearted. Yes, it is uncurable. But with proper diet, exercise, and medication, it can be controlled. Yes, it is frustrating having labs done often. I had to have bi-weekly blood work done for 6 months. Talk about frustration. Yes, shifting dosages of your medicine as symptoms ebb and flow is no picnic either. It is awful feeling crappy for longish periods of time. But eventually, your balance will be reached. You will feel better and, depending on the condition, may one day no longer need to take medication.
— Angela Casey, Managing Editor of John Eric Home.
