Hi Andy,
It's been a few years since I was on here. I've been my own science experiment during that time, trying to get a handle on this and be as functional as possible. I've learned some things that might be helpful here and have questions you probably have insights on. Feel free to move this to an existing thread if it's a fit or change the subject. There are so many, I couldn't decide the right one, lol.
I think the problem in thalassemia (for me, anyway) is that it throws things off balance physiologically enough that symptoms can lead you down all kinds of rabbit trails looking for answers, from food intolerance to cardiac issues to hormone imbalance. Also, symptoms come and go and seem to have varying and inconsistent triggers. My symptoms are shortness of breath (often with tingling skin, like I'm going to faint), random numbness in my hands, arms, feet, legs, lower digestive discomfort/changes, extreme fatigue and weakness, exercise intolerance, inability to think/process, depression, neck pain, skin changes.
I've spent tons of money trying to mitigate individual symptoms, but none of it ultimately helped because it wasn't fixing the underlying problem. I've also had tons of testing done for specific symptoms (allergy, cardiac, hormone, thyroid, etc.) At one point I had a battery of tests done by a wholistic MD which showed my system was indeed jacked up, and she put me on a regimen of supplements that I needed a schedule to follow and cost over $400 per month. This was in addition to hormone therapy (pellets, bioidentical pills, creams, etc.) All of it helped some - for a little while. None of it helped consistently long term.
This is what I've learned after all the blood, saliva, and urine tests: I'm pretty sure it all comes down to oxidative stress (and subsequent ph imbalance). My tests showed my lactic acid levels are always high, like I've run a marathon (lack of oxygen to muscles, organs, etc.) and my antioxidant levels are really low (because antioxidants are in such high demand, they're getting used up as fast as you put them in). Oxidative stress in thalassemia is caused by unpaired hemoglobins wandering around, weak red blood cells breaking down too fast, and the constant demand to make more red blood cells too soon. Other things that cause oxidative stress for everyone are exercise, bad food/alcohol choices, food and environmental toxins, lack of sleep, emotional strain, viruses and other illness, etc. Thals' bodies are often already so stressed that any of those additional stresses throws us over the edge. I didn't really start getting hit with symptoms until my late 20's. I realize now how hard my body was working to keep me from noticing, using up all its stored antioxidants and nutrients to keep things in working order. Once I started feeling symptoms, there was nothing left to pull from and I was always on the brink of disaster. At first it seemed random; an emotional stress like a family member in the hospital would leave me physically unable to function, or exercising for three days would leave me on the couch for three weeks. Doing my best to put all the information together, I've made some changes that seem to significantly improve my body's strength and ability to function consistently day in and day out.
What I've done:
After learning eating animal products causes more oxidative stress, I've adopted a mostly whole food, plant-based diet; lots of vegetables, fruits, nuts, seeds, whole grains. Basically trying to get as many antioxidants in as I can everyday. (FYI, antioxidants in supplement form have been shown to be counterproductive. I tried them and now stay away from most supplements.) This has helped a lot! I feel like I've gotten my life back! I can exercise everyday and work everyday, and am for the most part not hijacked by emotional upsets. From what I've read, plant-based eating is okay for most people. Some have a problem synthesizing l-carnitine and might need something added. So far, I'm good.
The supplement I'm finding I can't go without is magnesium, and I'm not sure about calcium. I think I'll supplement carefully with it because calcium is pulled from the bones to maintain ph balance in the body during stress. I'd hoped I could give up all supplements, but I recently started experiencing the same old disabling shortness of breath I used to have. In a panic I high-tailed it to the nearest Vitamin Shoppe and got some magnesium. After taking about 2,000 mg broken up over four hours, I could breath again. (I don't know how you're supposed to dose it; I just know when I feel that bad magnesium always works a miracle. I break it up assuming your body can only absorb so much at a time, but I don't really know.)
Now we're to my question/confusion:
Magnesium is essential for all kinds of processes and reactions in the body. One of the things it does is help regulate nitric oxide. I've seen studies about magnesium supplementation in thalassemia and low nitric oxide in thalassemia (I know you have one posted on the site). I assumed the shortness of breath had something to do with low nitric oxide, so I added a pre-workout supplement that had l-arginine, l-citrulline, and l-carnitine. The first day I felt great. The next day and until I stopped it three days later, I felt awful! The shortness of breath returned in full force, but I also started having joint pain in my hips, knees, and hands. So I researched to find some connection and found high nitric oxide is associated with inflammation and high l-arginine also causes joint inflammation. My digestive system also went haywire and I got a white film on my tongue. So I'm pretty sure my ph balance was off. I know l-arginine is associated with digestive problems, but I don't know if that's because it interferes with ph or if those are two separate issues.
At this point I'm guessing this is something like the antioxidants: foods are good, supplements are bad. Maybe the magnesium helps form nitric oxide, but also keeps it in check, and the direct l-arginine is too much? I know you've recommended those added aminos, but that was awhile back. Have you learned anything more or new since then?
Thanks so much for all your research and input!