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Well, I saw a new hematologist today and I have to say, I've been crying pretty much non-stop! I've never yelled at a doctor before, but I couldn't resist today. I'm so very sad and discouraged.

After waiting an hour to see him (which I would do in a heartbeat to find the cause of all my issues!), he basically said that I have mild iron deficiency anemia and that at my hemoglobin level of 9.4, I shouldn't even have any symptoms. I was so upset and told him that having a 9.4 despite the amount of iron I supplement with every day (and for the last 7 years!) is NOT mild. He was looking at me on paper, not me the patient sitting in his office. He also said my b12 is normal because it is 320. AGAIN, I argued that a b12 level of only 320 after being on weekly b12 injections and also taking 2500mcgs of sublingual b12 every day is NOT normal.

He said he recommended we do iv iron infusions again and then see if they work this time. I told him that I would like to pursue a bone marrow biopsy because I think my main issue is NOT the iron deficiency, but more of a blood disorder or disease that the doctors are missing. The iv iron infusions made me very ill and I'm the mother of 4 small children. I cannot be sick 5 out of 7 days a week for another 2 months like the last time I did the iv iron infusions. He said that a bone marrow biospy was too risky and that he wanted to do the iv iron or he could refer me to Moffitt Cancer Center in Tampa, FL which is more than 2 hrs from me. I wake up fearing how I'll be able to make it through the day until I can put my kids to bed at night, but he wants me to drive 5 hrs roundtrip to get another opinion?! I'm so angry! And for once, I let a doctor know it!

I have almost every single symptom of mast cell disease (systemic and skin) and there are only 2 ways to determine it. There is a blood test that carries a high rate of false results or a bone marrow biopsy. I told him that a bone marrow biopsy made the most sense so that we could find out what is causing all of my deficiencies and they could really SEE what is going on with my red blood cells. As painful as I know a BMB would be, I am desperate to find a cause for why I'm ill and in pain 24hrs a day every single day!

He had the gall to tell me that my iron anemia had nothing to do with all the pain I feel in my muscles and tissue! I asked him how he, a hematologist, would argue the lack of oxygen in my red blood cells from the anemia wasn't damaging my muscles and tissues (AND BRAIN!) due to being robbed of oxygen! Why do we have to do the work for our doctors? He actually told me that we should both do research to come up with a possible cause and discuss them when we meet again. Seriously?! Why go to him if I'm the one continuing to do the research?

I'm so sorry, but I had to vent this out. I don't know what to do. I can't keep living like this day in and day out. I'm so sick of doctors assuming that all of my deficiencies are related to my gastric bypass surgery when I tell them over and over that I've been anemic since I was a baby. And even if my gastric bypass was a possible cause for the iron deficiency, why would my levels DROP after getting a series of 8 iv iron infusions? IV iron bypasses my gut obviously because it's being pumped directly into my veins, yet since they cannot come up with a reason, they insist it's the gastric bypass. Clearly, if my body isn't absorbing the iron from an iv, I might have an enzyme problem or a different underlying blood disorder.

I'm at yet another roadblock/dead end. I am losing faith that a cause will ever be found and I'm going to end up dying because they can't help me restore these essential vitamins and minerals. :(





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