Yes, it is a mystery to me how the American medical system works. I’ve been studying the system for a while. In fact, it is so mysterious, that I am doing my master’s degree on the American Healthcare system. And believe me, although I am halfway through the degree, I am none the wiser. I may actually even be more confused.
I have a chronic iron deficiency. I’ve been poked, analyzed and examined by hematologists and doctors in South-Africa. I’ve been submitted to almost every test known to mankind and the cause for my chronic iron deficiency has never been identified. I lose iron mysteriously and cannot absorb iron through food or medication. I’ve been getting iron infusions since my 20’s. It just is what it is. Would I have liked to have it resolved and not spend a couple of hours every couple months in oncology on an iron drip? Of course, I would. That is why I went along with all the tests and being a lab rat so that my issues could be resolved. But it was not and for me to continue doing endurance type sport, I need iron. So, I go for my infusion when I need it. I know when it is time. I am tired, I am more irritated than normally, and my skin goes greyish yellow. In short, I am miserable and so is my family. (Family suffers when I am constantly irritated because I have no energy, and everything is overwhelming).
And here comes the BUT about the amazing American Healthcare system. I move to the USA with my stack of papers and doctors’ reports and letters about my inability to absorb iron etcetera. My doctor in South-Africa was kind enough to provide all the documentation so that someone in the USA could take treatment over and take care of me.
The first doctor I saw, felt there is nothing wrong with me, and since my hemoglobin is still high, I should be fine. Regardless the fact that my iron stores are close to being depleted and that I am slowly dying of the constant tiredness and being short of breath. He was not interested in all my papers and letters and the history of blood work that I had brought in.
The second doctor I saw as a hematologist too and she is my doctor to this day. Did she help me right away? No. My doctor in South-Africa had to contact her directly and explain to her why I was a patient who needed to be treated with Ferritin. I love my doctor in South-Africa. He wrote her an extensive report on my health and wellbeing. She has treated me with iron infusions several times now. And she has seen my blood test results several times by now. She is fully aware that whatever she puts into my blood, I lose it over a period of months. I show up with my greyish yellow skin, droopy eyes and bolding head- well to me it feels bold because my hair falls out like crazy when my iron drops. I often think by the time I address my iron depletion; my family are at the point where they would pay any doctor to hook me up with an iron drip.
Although I am always treated and feel better for a couple months after, I still have to insist on being treated. Yes, I can go without the treatment. I can wait until my hemoglobin drops and I have no iron left, by which time I would be very miserable, probably divorced and certainly not training anymore because I would not have the energy or the ability to transport oxygen to my muscles to perform. I am a unique patient and there is a bunch of research on patients with my particular iron store problem. Why is it so hard for some medical professionals to understand that having high hemoglobin, does not mean I am just fine?
And then there is the other side of the coin, which make the way healthcare works totally impossible to understand. There are all these doctors advertising about BioT, hormone replacement therapy. Do you want to feel like when you were 20? Well, we have the solution. It is your hormones. And we will fix it for you. Not even the doctor himself but is assistant will run a couple of blood tests on you, and then tell you: Although your testosterone is within limits, we can make it higher, it will help you retain muscle and make you feel better. And while we are at it, let’s put you on thyroid medication. Your thyroid falls into the limits, but you know when you were younger, the numbers are different. We can tweak things a little and increase your metabolism…. And on it goes. They do not tell you that it might damage your heart or that you will develop acne and all sorts of other issues that you did not have when you actually were 20!
This is what I cannot figure out: I have a hard time to get the treatment I really need, a medical necessity for my wellbeing and staying well. But if I want to tweak my hormones and mess around with my health to feel 20, then I can pick and choose where I want to go. I can be harmed with no questions ask, as long of course as I pay for it, since not even insurance covers these feel like 20 again tweaks. But I have to become completely iron deficient, be anemic and run down before a doctor will treat me. There are years and years of data of my blood results. It is evident from the data that my body cannot retain iron. My iron stores become depleted regardless of the infusions. The infusions last between 6 and 9 months and then it is topped up again, before I get to the point where I am really bold and without hemoglobin. It is a win win. Give me the iron infusion in time and we prevent more serious complications due to my depleted stores. I think I am finally in a situation where my doctor knows it is what it is.
If only the so-called hormone specialist did iron too. It definitely would have made my life easier.