My eyes have been one of the biggest problems for me throughout this whole ordeal. I think they were somewhat dry and painful during the initial acute stages of my floxing, but this particular symptom and associated symptoms really began in earnest about eight months post the March 2010 Cipro. This is when I experienced my first “post Cipro” flare (Nov 2010), and is when my CNS symptoms hit over a 24-48 hour period. Within the subsequent week, my eyes became progressively drier and I lost all basal tear production. Eventually, I even lost reflex tear production, which means I had no tears when crying. I had an STT of zero (Schirmer tear test, normal > 15) – which means zero tear production.
There are simply no words to describe the pain and incredible agony of losing this precious protective fluid which bathes our corneas, provides clarity of vision, and protects our eyes from infection and foreign substances such as everyday dust. I was completely nonfunctional as a result of my painful dry eyes. I couldn’t read, use the computer, watch TV, or do anything but lay in bed in complete and utter misery, putting (non-preservative) eye drops in my eyes every few minutes. Sleeping was no escape; I had to wake up every hour or two to put more drops in my eyes. When I could read, I read the “Dry Eye Forums” on the internet in a desperate attempt to figure out this problem, but only met hundreds and thousands of desperate other people who were completely non-functional and suicidal because of their eyes. All I can say is: Folks, don’t ever get Lasix. You may pay for it down the line. (Some of the people on these forums developed severe debilitating dry eyes due to the eye correction surgeries).
I went through several months where I spent about $300/month on eye drops alone. Over time, I found that if I had the slightest amount of fluid, and I mean the slightest – STT might be 1 – that drops helped my eyes feel better and I could go a little longer between applications. The more of my own natural tear fluid I had, the better the drops worked. But when my eyes were “bone dry” – nothing helped. And it was hell. I almost didn’t make it through the “bone dry eye” period. Of course part of that was because the CNS symptoms went along with these eye issues, so the two together were a horrific combination. And it’s hard for me to believe that I’ve lasted as long as I have with these symptoms.
At any rate, by now, you can probably guess that I found out that rapid increases of T3, T4 and iodine made my dry eyes worse. As part of the “dosage symptoms” I was experiencing with T3 and T4, my eyes would dry up more for the first hour or two after taking the meds. The same would be true of iodine. However, getting the right combo of T3:T4 would give me some measure of relief for this symptom – maybe I’d have an STT=1. When I was on a fully suppressive dose of TH, many of my other symptoms improved dramatically, to the point I could walk, ride my bike a bit, and swim. But the dry eyes remained. In fact, it felt like the closer I was to “optimal” when it came to TH, the drier my eyes remained. The lower my TH, the better my eyes were – but any flaring, of course would dry them out for however long the flare lasted. But in an overall sense, the lower TH was, the better my eyes felt in terms of tear production. I spent an incredible amount of time researching thyroid conditions with dry eyes, and there’s definitely a correlation of eye problems with both Grave’s and Hashi’s. And my own experience proved to me that whenever TH levels were up, my eyes were drier, and I had that constant dry, gritty feeling of sand grains in my eyes. This lead me to believe there was a problem with TH getting into my lacrimal glands, or antibodies existed to T3/T4 itself, or even to tyrosine. In Year 5, when I was OFF TH, I experimented with taking just tyrosine supplement alone. And interesting enough, one of the effects was that it dried out my eyes more. So I became convinced there was something going on with just tyrosine alone that was causing me a problem with my eyes. Of course, the most interesting experiment of all was my “iodine experiment”. When I drove down TH to zero percent of range, and was taking higher dosages of iodine, that beautiful precious liquid gold called the natural tear film came back in all its full glory. I thought I was actually crying on several occasions; but no, it was just my eyes were back to “normal” in terms of tear production. This experiment was enough proof for me that my lacrimal glands were not getting the iodine they needed either via TH or some other mechanism, and that the tyrosine moiety was contributing to the overall problem somehow. It also proved to me that in my particular case, this was not a neurogenic problem or a gland problem. In other words, the nerves innervating my lacrimal gland were functioning well, and the gland itself was functioning well when the tyrosine component was out of the way. Both salivary glands and lacrimal gland cells concentrate iodine many fold over serum values. I’m convinced that this iodine is what helps with oral health to prevent cavities and maintain enamel, and eye health as part of tear production and protection from bacteria. Iodine transporters (NIS symporters) are heavily expressed in both salivary and lacrimal gland cells, but it became apparent that in me, that either this wasn’t happening or these transporters were defective somehow when TH hormone was around (which is in keeping with all my other iodine-related observations). It was only when the protein component of TH was out of the way, that my lacrimal glands appeared to start getting enough iodine again. At the height of my eye dryness, I actually developed some dry mouth as well. Overall, I can say quite confidently that both my dry eyes and mouth were very much TH/Iodine related. In particular, it’s my opinion that anything that increases TH, such as meds, or flares, or generalized hyperthyroidism, can contribute to or even cause dry mouth and eyes. Another interesting thing I noted was when I tried taking Tyrosine alone as a supplement in Year 4/5, it felt like one of the effects it had on me was a “drying” one. My eyes, and my lungs/chest felt drier all around. This also is supportive of tyrosine itself somehow contributing to the “dryness” issues. I don’t know why this would be, but I did wonder if Tyrosine itself had become an antigenic target, either alone or as in TH. Sjogren’s Syndrome, of course, is the “poster disease” for dry eyes and mouth. I continually monitor for Sjogren’s antibodies every 6 months, and have remained seronegative so far in the past five years.
Along with the dry eyes, my sinuses would feel painful and very dry as well. These symptoms virtually always occurred together, along with most of the other “head symptoms”. The dry eyes were a miserable experience overall. They were part of the overall “syndrome” of effects that occurred, and so they contributed to my overall indescribable suffering and misery. But even when I was ON an appropriate dose of TH and many of my other symptoms improved dramatically, having “just” the dry eyes was absolutely miserable for me in and of itself. In fact, it’s probably the main reason that, even when I experienced 80-90% improvement in my floxing symptoms from being ON TH, I wasn’t satisfied. The severely dry eyes affected everything: my ability to read, to watch TV, to use the computer, to write, to look out on the world; to be athletic, to be outside in the wind or cold night air; to blink the 23,000 -30,000 times a day the average person blinks without feeling the dry, gritty pain with each one of those blinks; to sleep at night without waking up constantly in pain just from my dry eyes alone. There’s “dry eyes”, and then there’s “Bone-Dry eyes” – zero moisture what so ever – and I simply couldn’t live a life worth living with that. That’s what kept me experimenting with TH (for better or worse), in an effort to solve the dry eye conundrum. That’s what drove me to keep trying different things, and it was during that experimentation that I found out that the lower TH was, the better my dry eyes were overall.
When I am NOT on TH, my TH serum lab frees normalize at about 40% for T4, and 30% T3. As long as I’m not flaring, or experiencing any sudden increase in T3 or iodine, I will have a bit of moisture in my eyes. My eyes are not back to normal in this situation, and I have all kinds of other problems as a result of not being on TH medication. But my eyes are what I call “tolerably dry” – still dry, but down to about $30-$50/month in drops and my eyes are functional.
For anyone wondering: no, I did not try Restasis. I did not think that putting Cyclosporine drops in my eyes would solve the problem. My problems, including whatever was causing the dry eyes, were systemic and interrelated — not isolated to just my eyes. If I were to try Cyclosporine, I would take it orally to get systemic immunosuppression, and if that was going to help, it would probably help my eyes too. It can take many months, “up to 9 months” for Restasis to work, and if it does, going off of it can cause a “rebound effect”. (This is something to consider, given the exorbitant price of Restasis). My guess is, for those in whom Restasis works, placing drops in the eyes is another way to get a low dose of systemic Cyclosporine into circulation, which eventually will accumulate enough to help the eyes along with whatever else it’s affecting. If I wanted to see if Cyclosporine was going to work, I think I’d rather take a full oral dose up front and find my answer out a little quicker than “9 months”.
There are flox victims who were floxed simply by using eye drops with an FQ in them. You can use eye or ear drops, and end up with tendon pain or ruptures within a couple of days or weeks just as easily as those of us who have taken the drugs orally. This is an excellent example of how whatever drops you put in the eyes, you can easily have a systemic reaction as well. The eyes are simply another portal into the body because of the way fluid production and circulation occurs during the process of normal tear production and circulation.