Renegade Immune System

My eyelids were red, stinging and burning. I was extremely sensitive to light. I had a dentist appointment one morning, and I almost cried with that light on my face. In the past my symptoms had been redness, acne, and flaking skin on my cheeks, nose, and forehead area. This eyelid situation is ocular rosacea, or blepharitis (inflammation of the eyelids). I debated going to an ophthalmologist but I knew what he or she would do: prescribe antibiotics. I had just finished a six week round of antibiotics that completely screwed up my body and triggered rosacea symptoms that were worse than before I started the antibiotics.

I began a twice daily regime of washing my eyelids with Johnson & Johnson baby shampoo, and also putting a warm washcloth on my eyelids at night (recommended in many things I read online). It helped, but the symptoms persisted for about two weeks. I stopped taking my multivitamin and lysine supplements, meaning levothyroxin (for hypothyroidism) was the only thing I was still taking. I noticed that my hair was falling out, and I had bursts of tingly electrical sensations in my fingers and toes. One morning I woke up and felt like my face was swollen…especially under my eyes. My eyes felt like they could pop out of my head at any moment. I had no appetite. My eyes felt gritty. Suddenly I realized, could it be the levothyroxin? I looked online, and I was horrified by the side effects: swelling of the face, hair loss, etc. When I received this medication, the pharmacist told me to take it on an empty stomach and “just start feeling better.” My TSH (the stuff that tells your thyroid to produce more thyroid stuff) had ranged from 4-6 for the past few years, which was too high, in my primary physician’s opinion (I have since read, and was told by a nurse, that some physicians consider TSH as high as 10 to be normal). How could doctors have recommended that I take a medication that can promote inflammation, when they know I have a condition where I am already susceptible to inflammation? I specifically asked my dermatologist if the levothyroxin would be a problem and she said no.

I called my primary physician and talked to the nurse, to let them know that I was stopping the levothyroxin. When I explained this, the nurse said, “You should be assessed by a physician before stopping your medication.” She insisted I go to the walk-in clinic that day. She made a comment about inflammation moving into my throat, which made me panic. I was already extremely emotional about this situation.

Reluctantly, I went to the clinic and explained all the problems I’d been having to the nurse, who then said, “Are you usually this emotional—this labile?” She then asked if pregnancy was a possibility. I resented this, as I am familiar with the term labile, a clinical term that was frequently applied to my mother by medical professionals during her four month hospital stay and stroke rehabilitation. I believe it is a convenient way for medical professionals to discredit you, and therefore not have to look at you as a whole person.

Then the doctor came in, and I told her all the same things. She said she didn’t think my face was swollen, and she said, “You’re really upset about this, aren’t you?” She told me my TSH was down to 3.62 (I’d had my blood drawn that morning). I asked her what normal range is and she said it is very wide, like .5 to 6. She said most people feel best when their TSH goes down to 2.0-2.5. She looked up the levothyroxin side effects on her computer, read off hair loss and facial swelling, but then said that these things can also be caused by stress.

When I explained to her my concerns about long term use of antibiotics, especially the side effects, she told me to eat a cup of yogurt every day.

Then she told me that if I think it’s the levothyroxin, then I should quit taking it for at least two weeks and see if the symptoms go away.

Well that was a huge waste of time!

My symptoms improved dramatically after I stopped taking the levothyroxin. I have no doubt it was aggravating my rosacea. What if my TSH level is my body’s natural way of trying to reduce the inflammation I’ve been experiencing for so long? Obviously I experienced more inflammation at a higher metabolic rate.

I felt so good after I stopped the levothyroxin, and my nephew was visiting and we were doing all sorts of stuff that I slacked off on trying eliminate glutens and eat mainly fresh fruits and veggies. I ended up at a lot of fast food restaurants. Then, one day this week I ate a tuna salad with honey mustard from Subway for lunch, and immediately after, I felt terrible. My eyelids began to swell, and I was extremely bloated…I’ve since read that canned tuna can trigger rosacea flare-ups; it’s one of several foods that can induce a histamine release. I also read about protein digestion and sugars…protein is the most difficult food for your body to digest…eating sugars along with protein can interfere with the protein digestion, meaning that the food will linger in your stomach for way longer than usual, creating a perfect environment for toxic yeasts, fungi, and bacteria, creating an unhealthy intestinal environment. Also, your skin is a major way through which your body eliminates toxins…at this point, let me remind you, that my dermatologist told me that nothing causes rosacea.

I am reading Rosacea: Your Self-Help Guide by Arlen Brownstein, a naturopathic doctor, and Donna Shoemaker, a nutritionist. It is the most helpful and thorough resource I’ve found on rosacea, including various medical approaches to managing rosacea, as well as in depth information on nutrition and your digestive tract. I am convinced that long term use of antibiotics has completely upset the natural balances of my body, especially my digestive tract. I also believe that I may have a problem with glutens and with some meats. This is an opportunity to improve the overall health of my body. I went to the farmer’s market yesterday and the organic local foods store, and bought many fruits and vegetables I have never even tried before.

I have begun talking with a naturopathic doctor, and I am very hopeful that this will be a positive experience. “This sounds like a renegade immune system issue,” the naturopathic doctor said when she replied to my email. “Make sure you know what your triggers are.” Somehow I sense that this isn’t going to be a ten minute doctor visit in which I’m written off as labile and sent away with a prescription in hand.