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I'm glad I found this board. I recenly had a routine CBC show up with rather significant anemia (Hemoglobin 7.6 with an MCV of over 100). Three years ago, I had a series of surgeries for Ulcerative Colitis which removed my colon and formed a pouch out of the end of my small intestine. I was doing very well until I learned of this anemia. I had severe anemia when I had U.C., but it felt very different from the way I'm feeling now. I could barely walk 10 feet. The U.C. got really bad really quickly and I ended up needing lots of transfusions. Once I had the 3 surgeries and the U.C. was pretty much cured, I had to take iron pills for a few months, but then my anemia was resolved. My PCP originally thought the anemia was related to a nutritional deficiency brought on by my surgeries and referred me to my surgeon. She also gave me a B-12 shot because my B-12 was on the very low end of normal. My surgeon, however, doesn't think the anemia has to do with my digestive tract at all, but he's ordering a small bowel barium test to rule out Crohn's. I have that test tomorrow morning. He also referred me to a hematologist, who I will see on Wednesday afternoon. I've been doing research online and have found some rather scary types of anemia, including Autoimmune Hemolytic Anemia, which seems like it can be hard to treat and requires some rather undesirable drugs for treatment. The only symptoms I have are slight pallor and very mild fatigue that I hesitate to even call fatigue. No aches, pains, jaundice, or unusual bleeding. I don't know how my hemoglobin got so low with so few symptoms. I'm having another CBC on Wed. at the hematologist's office to see if the hemoglobin is getting any lower. I'm really scared going into this appointment. Does anyone have any insights/words of wisdom for me? BTW, I'm a 31 y.o. female and I'm also being treated for hypothyroidism.

Kris
I also have hemolytic anemia (have had it all my life) and at times have had HgBs as low as 5 and 6 (which required immediate transfusions). However, I am on Aranesp 2x a month which helps to boost the hemoglobin but my average hgb is about 8.5. I guess your body starts to compensate after a time.

On a day to day basis my life is totally normal. However, when I am not well (with a virus or when my son or husband has passed some illness on to me), I get very fatigued, an extremely rapid heartbeat, headaches, and anxiety. In fact, I am experiencing some of this right now.

Besides the aranesp, I take Foltx every day. I try to get lots of sleep and to know my limitations -- no cardiovasular exercise, no drinking, no late nights and to stay away from sick people.

When I get these anemic crises (as my doctors and I often call them), I know I have two choices -- transfusion or to rest in bed for as many days as it takes until I feel better. In the late 80s and early 90s I opted for transfusions but a few years later I learned I also have hemochromatosis (iron overload) so I do not get transfused anymore because I cannot stand the thought of putting more iron into my body.

I know it is scary and frustrating. I have some other medical conditions on top of the two mentioned here. It is easy to get bogged down in it and feel self-pity. When I feel this way, I always try to think of people who have it worse than me. I guess it is all about perspective. Good luck.
As I was reading the thread, I was thinking that you definately have B12 anemia, then I saw your hematoligst diagnosed it. As to whether it is pernicious or not can be determined by a test for the intrinsic factor, indicating that it is PA, which is an autoimmune disease, btw. Did you have the test?

Additionally, I read that having iron deficiency anemia, where one would usually have a low MCV, can mask the ordinarily high MCV one would have in a b12 anemia situation - there is a push pull in terms of MCV size which runs in both directions. For instance, I have very low ferritin and an MCV which is always bottom range, e.g. 80 or 79, below. However, I have a b12 deficiency, though not anemia. If a physician were looking only at MCV, he would never think to look at the serum b12. However, I have learned that if I had a good b12 level, my MCV would be lower, and if I did not have a low ferritin, the b 12 deficiency could manifest as a higher MCV. But since my ferritin is more significant issue than my b12, I hover in the lower MCV range. Hope this does not confuse you.

The reason I ask is if you were being treated with iron previously, did you also have a low serum ferritin indicating depletion/anemia in addition to the low hemoglobin?

One can have both multiple anemias/ deficiencies at the same time. Has the hematologist looked at your serum ferritin?

Now both deficiencies/anemias can be caused by malabsoprtion, in your case by your digestive tract. Of course, there could be something else going, so it is good you are getting further tests following your colitis and with your hematologist. There is a possibility, that your hypothyroid condition can cause anemia ask your hematoligst about the relationship between endocrine disorders and hypo I read (or tried to read) some very complicated articles about the relationship between hypo and reduced production of the hormone Erythropoietin, which in turn reduced the production of red blood cells. (I was reasearching my own hypo condition and low ferritin)

Finally, have you been tested for celiac? It can explain lack of b12 absorption (and ferritin too) and can also play a role in digestive diseases such as colitis and IBS. It is rather common, tho many drs don't routinely test for it. :)
Hi Sparkles,

He hasn't ordered the intrinsic factor test, but he did at one point mention getting un upper endoscopy to look at my stomach. He mentioned that an endoscopy would show celiac too. I think he wants to try the B-12 for a few weeks and see if it continues to raise my Hgb/HCT. As of this morning, the B-12 tests hadn't come back from the lab, so he didn't have official word that it was the B-12, but judging by how my Hgb is continuing to climb, he strongly suspects B-12 deficiency plays a significant role in my anemia. Maybe when the B-12 test comes back he may have me do the endoscopy.

As for my MCV, it was over 100 so it's macrocytic, which means B-12 is more responsible for my anemia than iron, but doc is having me take iron because it was a little low. When I was treated for iron before, by my GP, I don't believe I had a serum ferritin test. My anemia was very mild then (Hgb was 11.3) so they just told me to take iron pills. This time, my ferritin was 13, which is in the normal range but still low.

Still waiting for the results of my GI tests (upper GI, small bowel follow through, and pouch biopsy). My colorectal surgeon is supposed to let me know about those.





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