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My Anemia Story
Sep 4, 2011
For years, doctors have looked at my labs and said, "Eh, you're a bit anemic." Then my symptoms got worse. First it was the stamina dropping off- like my muscles didn't want to cooperate with me. Then it was the shortness of breath walking any distance over 50 ft. Then it was the muscle cramps- those were the worst. Always in my trunk, sometimes stretching around my back, sometimes just my diaphragm. Always super painful, and at very inopportune moments. Then the restless legs, the thinning hair, and the worsening stamina that makes meaningful physical activity impossible. OH! Don't leave out the cravings for ice. 24/7 ice ice ice ice, that's all I want when I can get my hands on it. I even bought a fridge that does filtered crushed ice so my teeth take less abuse. Lucky for me, I haven't busted a tooth yet!

All this, slowly over the course of the last 5-7 years. My weight gain gets worse during this time, naturally due to the lack of physical activity. My doctors chastise me- "Go home and lose weight," they'd say for every single problem I brought to them. They'd draw labs, and say, "Eh, you're still anemic." I really didn't know what that meant, and they never suggested any treatment for it, so I stupidly assumed that it wasn't a big deal. Except it was.

After being frustrated with the lack of decent care from my doctor, I started going to a new one. This one took more notice of the labs- "How long has it been like this? Years? And they never did anything?" she said. I started a long barrage of tests to see what the cause of the anemia was. My tests at that time included:

Upper GI (including biopsy to test for wheat allergy)
Lower GI (colonoscopy)
Pill Cam (that was fun- like Las Vegas in your toilet!)
Barium sonogram

And more blood tests. My new OB put me on Prometrium to reduce my period flow- works great, still taking it, but it did nothing to help my numbers.

All my tests up there? Every single one came back normal. No bleeds, no issues. I have a beautiful digestive system that is very efficient. It also hates taking the Slow Fe my doc wants me to take, which also does nothing for my levels.

Then my doc gives up. There is no longer any mention of my levels, despite the fact that last fall, my iron was only at 6. I thought I should see a specialist, but they wouldn't send me- they didn't suggest it, and I stupidly thought that it would be "rude" of me to be so presumptuous as to ask for it.

One day at work, a fellow tells me about his symptoms, and they sound so much like mine. He tells me about this great specialist he saw, and how he did the IV iron and gets B12 shots and that he feels like a new man. I ask for this doc's contact info, and I call the next day for an appointment.

Three weeks later with all my old labs in hand, I go to the doc. I bring my 17yo daughter along- she wants to be a doc someday and I want someone there to listen in case I miss anything. Did I mention that sometimes my brain doesn't want to focus like I want it to? Turns out, that too is an anemia symptom when it's severe.

The staff is ready right away- no waiting? The doc is very nice- no mention of my weight being the cause for my problems. He reviews the labs and talks to me about my symptoms. I have not written them all down, and I forget to tell him some. But the labs really tell the whole story. He says he's going to order the IV infusions for me- he says this even before he's drawn new labs and that tells me I should have come in here months, even years ago. They say it will take 2-3 weeks to get the insurance to approve the treatment, and then it will be 5 visits of 2 hours each over 3-4 weeks. They say I might have to do 2-3 rounds of this to get my numbers up where they should be. The doc sends me downstairs to the lab to get a fresh draw.

These are my current numbers, as of 8/15/2011:

Ferritin: 9
WBC: 4.9
RBC: 5.33
Hemoglobin: 9.4
Hematocrit: 30.9
MCV: 57.8
MCHC: 30.5
RDW: 21.3
Platelet Count: 483
Hypochromasia +++
Microcytosis +++
Anisocytosis ++
Methylmalonic Acid: <.10
Haptoglobin Serum: 221

I have my first IV Iron infusion with Venofer scheduled for Friday Sept. 9, 2011 at 2:30P. I am worried about having a bad reaction as some here have discussed. I am considering taking some Benadryl at home, preemptively just to ease my own anxiety a bit. I'm also really worried about the constipation issue, but the nurse says it's not as bad as it is with the oral stuff, but if I have trouble some Miralax will help. I do not like Miralax, but I like being able to take a decent crap better. (Sorry for the language, that's just the way it is!)

I have many hopes and dreams that this treatment will clear up so many of the problems I face with physical activity. My dream is to be able to be physically active again as I once was, and be able to do the things I can't do today. I just want to get healthy.

This is the thing that continues to bother me: Why is it that the other doctors either didn't really care about my condition, or just gave up? Was I not worth it to them? Did they just see me as a fat person who didn't deserve more effort on their part? Is it simply a matter of doctors not understanding anemia and the treatments available for it? And why didn't I ask to see a specialist before this? I knew they were out there, I knew where to look, but I felt that if my own doctor looked at my labs and didn't think it was necessary then it just wasn't, even though in my heart I wanted them to tell me to see a specialist and get it fixed.

I know this is really long, but I've read a lot of your stories here and it's really helped me understand this condition better and know that I'm not alone in dealing with this. If it's OK, I'd like to keep this updated with my progress as things go along.

Thanks! :wave:

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