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  • Anemia with few symtoms...Scared & confused

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    Old 04-23-2007, 03:44 PM   #1
    MissKris75
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    Question Anemia with few symtoms...Scared & confused

    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

    Last edited by MissKris75; 04-23-2007 at 04:39 PM. Reason: adding information

     
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    Old 04-25-2007, 01:27 AM   #2
    japlopper
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    Re: Anemia with few symtoms...Scared & confused

    Kris,
    I have hemolytic anemia. It is difficult to treat, but it is manageable.

    Hemolytic anemia is an autoimmune disorder, and is often triggered by something like a virus or chemical exposure or some illness. Your hemoglobin is very low. When mine was 8, I could barely function, so I take my hat off to you to be able to keep on going at 7.

    Don't be afraid to see a hematologist. It will be the best way to find out what's causing the trouble and the best way to get a good treatment plan. The first visit, they will ask a lot of questions and run a lot of blood tests. A hemotologist has plenty of experience with anemia and other rare blood disorders - it doesn't mean automatically mean cancer, but I know it's scary becasue most hematologists are also oncologists.

    If it is hemolytic anemia, sometimes they can treat you with Prednisone, get the condition under control and you can be fine for a long time. Prednisone is a tough med, but with the right dr, you can survive it without gaining a bunch of weight.

    Take care and ask questions if you have them. I've been through plenty with my hemolytic anemia and my ITP (platelet destruction problem).

    I hope you feel better soon,
    Jill

     
    Old 04-25-2007, 09:19 AM   #3
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    Re: Anemia with few symtoms...Scared & confused

    Hi Kris,

    I tend to agree with your PCP. An elevated MCV usually means a B12 deficiency anaemia (pernicious anaemia) or folic acid anaemia which could have been caused by your surgeries. A decreased MCV is indicative of an Iron deficiency. Normal reference values for MCV are 80 - 100. Crohns Disease and colitis often lead to pernicious anaemia. Also hypothyroidism can co-exist with pernicious anaemia...both are autoimmune diseases.

    Regards,
    cats

     
    Old 04-25-2007, 10:02 AM   #4
    MissKris75
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    Re: Anemia with few symtoms...Scared & confused

    Thanks, Jill, for your insights and words of encouragement. I've been on Prednisone before, when I had ulcerative colitis and then for the three surgeries I had for the UC. It was off and on for about seven months, so I didn't gain much weight, but it gave me severe mood swings, especially at the higher doses. I'm on an antidepressant, but Prednisone seems to override it.

    As for my hemoglobin level, I'm baffled as to how I'm able to function with it that low. That's definitely a question I will ask the hematologist this afternoon. As far as I know, I'm not superwoman. LOL When I had anemia with the UC I could barely walk 10 feet without needing to lie down. I needed a wheelchair just to go into the ER. Maybe my hemoglobin fell really gradually and I adapted to it, but I still think I would be a lot more tired with a level this low.

    Thanks again for replying. I'll let you know what happens.

     
    Old 04-25-2007, 10:11 AM   #5
    MissKris75
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    Re: Anemia with few symtoms...Scared & confused

    Thanks for replying, Catscandance. The one thing that makes me doubt it is pernicious anemia is my age, since pernicious anemia tends to affect older people. I mentioned pernicious anemia to my surgeon and he said I was too young for it. Of course, he's a colorectal surgeon, not a hematologist, so anemia isn't his area of expertise. You and my GP could be right, though, and I hope you are, as PA seems to be much easier to treat then some of the other kinds of anemia.

     
    Old 04-25-2007, 10:19 AM   #6
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    Re: Anemia with few symtoms...Scared & confused

    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.

    Last edited by singscooks; 04-25-2007 at 10:21 AM.

     
    Old 04-25-2007, 03:01 PM   #7
    catscandance
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    Re: Anemia with few symtoms...Scared & confused

    Hi Kris,

    "since pernicious anemia tends to affect older people."
    Even the medical profession think the same way, that pernicious anaemia afflicts only people over the age of 50, some doctors tend to think even over the age of 60. My daughter was diagnosed at the age of 27, it took 2 years for her to get a diagnosis because all of the doctors she saw (including specialists) did not think to check for it. The pernicious anaemia society has members as young as 14 who have been diagnosed with pernicious anaemia with the higher ratio being in the age group of 31 to 45 and the second highest being 16 to 30. An MCV above 100 is very indicative of a megaloblastic anaemia, either pernicious anaemia or folic acid anaemia or both. My daughter has both. For some reason, she developed antibodies to the Intrinsic Factor and as a result cannot absorb B12 naturally. There are many other reasons for this disease, colitis, crohns, bowel surgery, gastric by-pass, any procedure that permanently disrupts the digestive system, also certain medications can cause pernicious anaemia. Many people who have PA also have either hypo or hperthyroidism, Iron deficiency anaemia or even all three.

    Almost forgot to mention that pernicious anaemia is treated easily if diagnosed early but it if it is not diagnosed early there can be permanent damage to the central nervous system such as subacute degeneration of the spinal cord (the most severe form of PA) which is non-reversible with B12 injections. Damage can also occur to the peripheral nervous system but this damage can be reversed with the proper loading doses of B12 and then by maintenance dosage

    Regards,
    cats

    Last edited by catscandance; 04-25-2007 at 03:15 PM. Reason: added information

     
    Old 04-25-2007, 07:14 PM   #8
    MissKris75
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    Re: Anemia with few symtoms...Scared & confused

    I'm back from the hematologist's and he's running some tests to determine the type of anemia I have. He said (like you did, Cats) that pernicious anemia can happen at any age and said it was a possibility in my case. Hemolytic anemia is also a possibility. I go back on Monday morning to hear my results. He looked at some of my blood cells and since I had a B-12 shot last week with my PCP, he couldn't tell if all the new RBCs are due to the B-12 stimulating my bone marrow to create new cells or that the older cells are being destroyed. He said my bilirubin is normal, though. Also, my hemoglobin is up to 7.8 and hematocrit is up to 25 (it was 22 or something two weeks ago) so at least it's moving in the right direction.

    When I get my results on Monday, I'll update you all. Thanks for your wisdom and support.

    Kris

     
    Old 04-30-2007, 10:57 AM   #9
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    Re: Anemia with few symtoms...Scared & confused

    Saw the hematolgist again this morning and he's pretty sure the anemia is mostly due to B-12, but hasn't completely ruled out hemolytic anemia since I tested Coombs positive. He said, however, some people who test positive for that don't end up destroying their blood cells so there's hope there. He's going to give me weekly B-12 shots and as long as my counts keep going up (my hemoglobin's now up to 8. Yay!) that will be all I'll need to do. If it starts leveling off, then some hemolysis (blood cell destruction) might be going on, but he is going to hold off treating hemolysis unless my blood work starts showing it. So no dreaded pred for now at least. He told me to start taking folic acid supplements in addition to the B-12 and the iron so hopefully that will help keep things on the up and up.

     
    Old 04-30-2007, 04:04 PM   #10
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    Re: Anemia with few symtoms...Scared & confused

    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.

     
    Old 04-30-2007, 06:46 PM   #11
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    Re: Anemia with few symtoms...Scared & confused

    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.

    Last edited by MissKris75; 04-30-2007 at 06:47 PM.

     
    Old 05-01-2007, 09:06 AM   #12
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    Re: Anemia with few symtoms...Scared & confused

    Hi Miss Kris:

    I am not a medical professional, so I cannot rule out other possibilities in your case, but I do have a few thoughts on your last post. Having been mis and under diagnosed for many years, I am a firm believer in "research it" and "cover all the bases", even if it contradicts the "wisdom" of the dr. So, I would ask for a few more tests...

    On the pernicious anemia front, I do know that there are some anti body tests which help to diagnose pernicious anemia, in addition to the intrinsic factor, since PA is an autoimmune disease (which I only recently learned!)

    sound like you are in good hands otherwise. good luck with your diagnosis.

     
    Old 05-02-2007, 04:18 PM   #13
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    Re: Anemia with few symtoms...Scared & confused

    Quote:
    Originally Posted by sparkles916 View Post
    Having been mis and under diagnosed for many years, I am a firm believer in "research it" and "cover all the bases", even if it contradicts the "wisdom" of the dr. So, I would ask for a few more tests.
    I'm going to second that! It's so important to learn as much as you can because when you're not feeling well, you're sometimes too weak to use your better judgment or question the doctor. On anemia, there's a good book called
    Anemia in Women: Self-Help and Treatment by Joan Gomez (I got a copy at the library). It's very helpful, and explains everything clearly. After reading it, I feel much less panicked about the problem. And I feel I can stick up for myself when I see another doctor to get the tests/treatment I need.

     
    Old 05-02-2007, 05:44 PM   #14
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    Re: Anemia with few symtoms...Scared & confused

    Thanks, Sparkles and ElleDi, for your advice about researching and covering all the bases. I see my hematologist again on Monday for a B-12 shot and I will be preparing a list of questions for him about the tests he has performed and the ones I should have. ElleDi, the book you recommended sounds like a good one. I'll look for it.

     
    Old 05-10-2007, 10:20 PM   #15
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    Re: Anemia with few symtoms...Scared & confused

    I had my appointment on Monday and my hemoglobin is up to 9, from 8.1 last week, so it looks like the B-12 injections are working. I asked the doctor about tests and I tested negative for antibodies for parietal cells (the pernicious anemia test) and although my LDH was elevated and the Coombs test was positive, he said that both of those results could be caused by B-12 deficiency as well as hemolytic anemia. These tests were taken from the blood drawn at my first appointment, by the way. He is ordering two more tests, the ANA test and a test for celiac. I don't have any symptoms of either Lupus or Celiac, but these are mainly for the purpose of ruling out. I know celiac may need an endoscopy to diagnose even if the blood test is negative, however.

    Since my hemoglobin is continuing to climb with the B-12 injections, the doctor thinks the B-12 deficiency is the most likely cause and that the surgeries I had for UC three years ago may have changed the way I absorb B-12 and to some extent iron and folate. I tend to not gain weight as easily as I did before the UC/colectomy/ileal pouch formation (which is not to say I have trouble maintaining weight. I don't lose, but I don't gain either) so it makes sense that since less calories seem to be absorbed, I might lose some nutrients as well. Still, it's good to have the tests run just to make sure it's not something else. I go back next Tuesday for another blood count and B-12 shot, so hopefully the Hg will keep rising and I can crack the double digits

    Thanks for all your support!

     
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