When I was six years old, I was anemic with none of the normal causes. After tons of tests and a few trips to New Orleans, the doctors, finally decided I had the Alpha Thalassemia Trait. They had (and still don’t) no definitive proof, but all other options were exhausted and, naturally, the Alpha Thalassemia Trait was how I was diagnosed.
Most people with this trait have no symptoms and go through life with no problems. I am not most people and for as long as I can remember I have been anemic. Honestly, I am not sure that it has had much of an effect on me, but then again I wouldn’t know the difference. The only thing I can say definitively is that I have always sucked at any type of cardio exercise and anemia is what I am going to blame it on.
Fast forward 18 or so years and I start to get migraines. Of course, they aren’t what I think of as a “normal” migraine. My head hardly ever hurts and they don’t put me down for the day. However, I completely lose my peripheral vision, can’t focus on anything, my face and tongue go numb, and the worst ones cause me to lose my ability to speak (More accurately, I speak gibberish. In my brain the words sound okay, but when I go to talk they are all jumbled up.). The migraines scare the shit out of me. I go to a few doctors, have an MRI, and they find nothing. The doctors conclude “It’s just something I will have to live with.” Like an idiot, I take that as a valid conclusion and go on with life.
Slowly but surely over the next year, my symptoms get worse. On top of the migraines, I start to become more and more lethargic and start feeling cold all the time. So much so, that I begin wearing a jacket in the Texas summer (100 plus degrees!). With these symptoms, I decide to try doctors again. This time I go to a Hematologist (blood doctor). I figure, with the Alpha Thalassemia Trait stuff, a blood doctor might be a good choice. After tons of tests and office visits, she feeds me a bullshit diagnosis that I now realize really meant “I have no idea what is wrong with you, but here is a crazy explanation to make you happy.” Again like an idiot, I accept the diagnosis and that I will just have to live with it all.
Fast forward another year and a half, the symptoms get to the point where they are severely affecting my life. Some days I can’t even get out of bed. Plus, I am a complete dick to everyone around me because I feel so bad and my mental state sucks. I’m depressed. I have absolutely no sex drive. I’m not motivated. I’m always tired. It, simply, just sucks.
At this point, I decide to take my health in my own hands and start doing my own research as to what might be wrong. The conclusion I come to is low testosterone. With that idea in hand, I go to my family doctor and get him to run a testosterone test. Sure enough my testosterone level is 250 ng/dl which is low for an 80 year old man much less a 27 year old one. Armed with this knowledge, I get on testosterone replacement therapy (TRT) thinking the whole time “Fuck Yeah! I figured it out.’
After six months of TRT, I feel only marginally better. My recovery after physical activity is better, and my body composition is starting to get better. However, I’m still mentally messed up. I’m still lethargic. I’m still super cold. I’m still completely unmotivated. I still have no sex drive. So, I go to a new doctor. I tell him all my symptoms and then request he run every blood test he has in his toolbox. We take about seven vials of blood and wait two weeks for the results. As soon as I get to the follow-up appointment, I ask for a copy of every test he ran. With the copies in hand, we begin going through the results. No AIDS, no Hepatitis C, no signs of cancer, and no to a hundred other crazy illnesses we checked. Everything looks good except my iron levels. My serum ferritin level is 2000 ng/mL (Turns out “normal” is between 12 ng/mL and 300 ng/mL with 300 ng/mL being considered high).
Immediately, I ask him “Well what does that mean?” He explains that, basically, the iron is accumulating around all my organs and if we don’t get it down it will eventually cause my liver, heart, and all my other important organs to start having problems. He, also, tells me I need to have an echocardiogram (and eventually a cardiac MRI), X-rays of my joints (Looking for arthritis), and a liver biopsy to see what damage has already been done. We, also, schedule an appointment with an endocrinologist because he suspects that not only have my testicles been shut down by the iron (the cause of my low testosterone) but also some of my other smaller organs like my pituitary gland and thyroid have been shut down too.
Luckily, I am super level headed and can keep it business through all of this, so I ask “How do we fix it? Whatever it is, let’s start today.” So, beginning that day we start taking one pint of blood a week with no end date in sight. In fact at the time of writing this I am one year into it and still have no idea when I will stop having to give blood every week.
There is much more to this story that will continue in further posts, but I want to stop here because it is worth going over a few lessons I learned during the time I spent searching for answers to my health problems.
What I learned from all this:
Basically, I accepted the diagnosis of “It’s something you will just have to live with.” twice at the beginning of my journey. Potentially, I could have gotten ahead of all my iron problems, not lost the function of my testicles and thyroid, and avoided whatever long term effects I am yet to encounter. In hindsight, I realize that I should have put my foot down and told the doctor I would not accept a bullshit diagnosis. I should have told the doctor we were either going to find a real diagnosis or I was going to find a new doctor. I should have never accepted the diagnosis and damn sure shouldn’t have done nothing for years at a time.
Don’t Give Up
Do not accept that you have to live your life feeling bad and unhealthy. There will be times when you are discouraged. There will be times when you tell yourself “Oh It’s not that bad.” Don’t listen to that shit. I did and ended up with health problems that will follow me forever.
To some extent this goes hand in hand with question everything. You can’t be an effective question asker if you aren’t informed. In this case, the doctor is the expert which means two things: 1. You need to have questions for the expert to answer that will help your specific situation. 2. The expert isn’t always right. It is your health and ultimately your responsibility. You must take your health in your own hands and provide input to the expert and not rely solely on the expert to solve the problem. Remember: The doctor sees hundreds of patients a week. There is absolutely no way he or she can research and reflect on every case, but you can. You only have yourself to worry about.
Keep every test result. Keep every diagnosis report. Keep everything. No matter what. This way if you have to get a new doctor, go to a specialist, or go to the emergency room you have everything they may need to see.
To be fair I learned this during the time my grandmother was in the hospital and I was making the decisions for her well being. That being said, I fully realized the usefulness when I was sitting in the doctor’s office being told that my iron levels could be causing liver and heart damage. If I had panicked, I wouldn’t have had the awareness to ask questions as to what I need to do to help get my iron levels down or find out more about the problem so that I could research it later. Most importantly, I wouldn’t have had the ability to make good decisions. Panicking doesn’t do you, your health, or the doctor any good. Panicking just makes things more difficult. I know it’s hard especially when being faced with potentially life altering news, but try to adopt a “Nothing is going to beat me. Let’s kick this thing’s ass” mindset instead of a “Woe is me” mindset. If you can’t adopt that mindset, bring a trusted friend or family member with you who can. Having someone at the appointment who can keep a level head and ask the right questions is important no matter if that someone is you or someone else.