I saw the hematologist today. He was really nice and quite concerned. It was nice to have a doctor take me seriously, especially after Dr. Attitude on Monday.
Before I saw him, I had to fill out 5 pages of paperwork and get 5 tubes of blood drawn. (It seems so weird that you have to take so much blood to determine a person is anemic. I know that they don’t take much, but it still seems weird.) I waited for a while before being taken back to the exam room, and then waited a little longer. (I guess they had to wait until all, or most, of the tests came back.)
When the doctor came in, he had looked at my file and was a little confused. (I authorized that my whole UAB file be sent to him, as well as my Huntsville Hospital one, so he may have gotten a lot of stuff that didn’t pertain to this issue.) He asked about an MRI of my head that had been done at some point and asked what it was for. I wasn’t sure which MRI that was, but I knew it was either headaches or seizures.
He then looked at the blood work that his office had just done. He asked if I ate a lot of ice. I knew where he was going when he said that, and I told him that I had been eating a lot of ice. He then asked about other weird cravings, aka pica, so I brought up the soap eating/craving that I’ve been dealing with for a while now. He said that that (the non-food cravings) made sense because of the anemia. Most of his anemic patients have some sort of craving, and one lady goes and digs up dirt at Walmart to satisfy her cravings.
He told me that despite my Hemoglobin and Hematocrit levels being normal, my blood cells were still too small and my actual iron & ferritin levels were still too low. (He also mentioned that my platelets and RBC counts being high was normal for iron-deficiency anemia, though he said that no one is quite sure about why platelet counts go up with anemia.) He, then, said that UAB had screwed up by letting my iron ever get that low and by putting me on the infusions that they had done.
I needed infusions, but I needed megadoses of infusions. Just raising my iron to a level where the Hemoglobin and Hematocrit normalized wasn’t good enough. My actual iron stores need to be rebuilt, and to do that the infusions have to be of a higher dosage–a dosage high enough to basically overload my system. Doing such low dose infusions didn’t really do any good, except to make some parts of my labs look a little better. My ferritin had gotten to about half of what is necessary for a person to live. My iron was about the same. If I hadn’t gone to see the hematologist, then I would have been stuck in an anemic state until I either finally got to see someone to figure out how to treat it properly or until I died. (No, that’s not me being dramatic. People with iron deficiency can end up dying of heart failure and blood clots.)
So the new treatment will be…an infusion. The hematologist is going to do one more infusion, but instead of 6 1-hour infusions (which was originally 6 30-minute infusions), he’s doing 1 4-hour infusion with a lot more iron. Two weeks later, I’ll have blood drawn again to see how much iron I still have. I’ll have periodic blood tests after that to see how fast my body is becoming depleted because he said that I’m going to start depleting again.
Once they figure out how fast the iron is disappearing, they’ll start working on what’s causing that to happen. He said I’ll probably have to have another infusion after the depletion starts, but that he’ll try to do that infusion before my levels can ever get as low as they were allowed to get this last time.
And, from now on, I am supposed to pay attention to the cravings. If I start trying to eat bars of soap or try scarfing down the contents of an ice tray, I’m supposed to let him know because that means that the deficiency is coming back.