I have the first autoimmune disease ever discovered: Hashimoto’s thyroiditis, named after the specialist (Hakaru Hashimoto) who discovered it in 1912. This condition means that my immune system attacks my thyroid, causing my thyroid to work too slowly. (The thyroid gland produces hormones that help regulate breathing, heart rate, body weight and much more.)
You can read about my “introduction” to Hashimoto’s in the first blog post I wrote in this series. Here I want to turn to one of the challenges that many people living with an autoimmune disease face: cutting through the clutter of “expert” information (especially online) and deciding what information can truly help you understand and manage your disease.
When you or a loved one is diagnosed with an illness, it’s natural to want to find a simple, fail-safe solution that will make that illness go away or become more manageable.
This may be especially true with autoimmune diseases, because the exact causes of these diseases are difficult to pin down, and symptoms can be frustratingly unpredictable. Living with so much uncertainty, it makes sense that we’re drawn toward treatments or lifestyle choices that “promise” to improve our health. Taking a supplement, changing your diet, a novel treatment rooted in ancient wisdom — you just want to be able to take control and make it better, right?
The good news is that there are almost always choices that you can make to positively impact your health. The bad news is that some “solutions” sound appealing, and may be making money for someone, but there’s no proof that they help beyond a temporary placebo effect. Worse, time and energy you spend on solutions that don’t work mean you have less time and energy to pursue solutions that do work.
Here’s an example from my experience. You’ve probably noticed that “going gluten-free” is being heralded as a cure for just about everything. Sure enough, do a web search for “Hashimoto’s” and “gluten” and dozens of articles pop up about leaky gut syndrome and how eliminating gluten from your diet can reduce the rogue antibodies attacking your thyroid.
A little self-discipline in my diet and I could control my thyroiditis? I can do that! And, inspired by one of these articles, I went totally gluten-free for eight months.
Now, eliminating gluten tends to cut out a lot of processed foods and extra carbohydrates that aren’t good for any of us. And my gluten-free diet did make me feel better and help me lose weight — but it had no bearing on my antibodies at all.
When I went back to the article that most influenced me on the topic, I realized that it cited research that wasn’t done by an endocrinologist (the true experts on the thyroid), wasn’t published in a respected medical journal, and had a very small sample size of patients. In short, it wasn’t reliable, scientifically-backed information.
After discussing it with my doctor, we agreed that if I felt better, a reduced gluten diet would be fine — regardless of whether that was related to Hashimoto’s or not. But we also decided that eliminating gluten completely wasn’t warranted until more research, by endocrinologists, was published suggesting that such a diet change would impact my autoimmune disease.
Stick with information from reputable medical journals, websites, hospitals and trusted sources. Don’t just accept the claims that a web article is making — look for its cited research and data.
For thyroid and other endocrinology information, the Allegheny Health Network (AHN) endocrinologist who reviews my posts recommended patient resources from the American Thyroid Association, American Association of Clinical Endocrinologists and the Endocrine Society (Hormone Health Network).
I love my chiropractor. He’s the best. And I believe that spinal care is one key to my overall health. But, I certainly wouldn’t go to him to get a prescription for eyeglasses.
So why would I take advice about my autoimmune disease from someone other than the right specialist?
My Facebook feed and email are loaded every day with posts, seminars, books and treatments from chiropractors, pharmacists, nutritionists, “functional medicine” practitioners and others. Some of this has value — but Hashimoto’s is an endocrine disease, so the first thing I do in sorting through this type of “expert” clutter is to take a step back and say, “Wait — was an endocrinologist involved in creating or assessing this?”
It’s good to pay attention to the latest research across all areas of health. For example, I’ve been interested in studies over the past decade that suggest that adding selenium supplements can help reduce or eliminate antibodies in some Hashimoto’s patients. I balance that with nationally respected reviews of that research and, most importantly, I factor in my endocrinologist’s thoughts — because he’s the primary expert on my disease.
If you have an autoimmune disease, you should be seeing at least one specialist to manage symptoms (in conjunction with your primary care physician [PCP]). Once stabilized, you may be turned over to your PCP for ongoing maintenance. Specialists for autoimmune diseases include:
Multiple sclerosis Neurologist
Crohn’s disease Gastroenterologist
Look at multiple trusted sources to get a well-rounded view on your disease or treatment, and help you differentiate between the proven and unproven. But always make sure you give appropriate weight to the views of the primary experts for your disease.
The pro tip here: Make the most of your visits with primary experts by coming to each appointment prepared with information (from reliable sources like the websites above) and a list of questions that you want to discuss.
When doing online research about autoimmune disease treatments, you’ll probably notice that “functional medicine” seems to be all the rage.
The Institute for Functional Medicine (IFM) describes functional medicine as a focus on addressing “the underlying causes of disease, using a systems-oriented approach and engaging both patient and practitioner in a therapeutic partnership … Functional medicine practitioners spend time with their patients, listening to their histories and looking at the interactions among genetic, environmental, and lifestyle factors that can influence long-term health and complex, chronic disease.”
That sounds pretty good, right? And if you explore a little further, you’ll find that the highly respected Cleveland Clinic has established a Center for Functional Medicine, and there are doctors who are board-certified in functional medicine.
But, there are also doubters and critics. In fact, I have doctors that say “no way” when it comes to functional medicine. Just as I have friends who say it’s the only way.
Here’s one tip, for sure: If you’re interested in pursuing functional medicine or other holistic or alternate therapies, it’s smart to check with your insurance provider to see if a treatment is covered by your plan.
When something like functional medicine becomes popular, some people and businesses inevitably jump on the bandwagon to make a buck or grab a moment in the spotlight. So enter this area with your “clutter detector” on high. Work with your doctor to evaluate and try specific treatments or lifestyle adjustments. If you want to talk with an IFM-certified practitioner, IFM has an easy-to-use tool to help you find one — but check with your health insurance company to make sure a doctor is in network for your plan. Also, remember that the ideal situation is not just anyone with a certificate, but a primary expert on your disease (in my case, an endocrinologist) who also has certification in IFM or in complementary and integrative health.
Although I respect his expertise, there are times when I feel I know more about my disease than my endocrinologist. After all, he sees me for 15 minutes every few months, while I live with my disease every day!
As with many autoimmune and chronic diseases, the protocol for Hashimoto’s is to treat the symptoms — because there is no cure for the disease itself. The same general approach is taken for a patient with low thyroid function and one with Hashimoto’s. However, someone with Hashimoto’s has a whole list of issues that someone with only low function doesn’t. Antibodies are constantly attacking the body, hormone levels are ever changing — it’s a different thing and it’s important to pay attention to the differences. Sometimes, you have to remind your doctor of something like that. And that’s OK!
Even the best doctor can’t know everything — and certainly can’t know everything about how you’re feeling in between visits. The best patient – doctor relationships are truly a partnership in that respect, and it’s very important that you find doctors that you trust and are comfortable communicating openly with.
So don’t be afraid to gather your own information — and trust your instincts and what your body is telling you. Track your symptoms, and log how they change. Then, take all that information to your next exam and have a conversation!
An open line of communication with your primary expert can make a world of difference. Hashimoto’s and many other autoimmune diseases are “dynamic” — they can be affected by many factors, so it really helps if you can tell your doctor about changes that may require an adjustment in how your disease is being treated. A trusted specialist is also your best ally in helping to find and use the information that will best help you manage your condition. Share articles or studies you’ve seen. Together, you can decide what has merit and your specialist may have additional tips on what sources are most credible and which to avoid.
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