|my anemia-why & how bad?
Mar 15, 2007
I am F, 46. I have had an AIDS diagnosis since 1992, but only b/c of low T-cells; I've had no opportunistic infections. This is my second struggle with anemia. Current doctor says--and (a different) doc said the first time--that there can be no other cause for my anemia problems than too much blood loss in my periods (and needing to take in more iron). But I am wondering if there could be any other cause. My periods are indeed a little heavier than they used to be as I've gotten older, but they were very light before, and I would think would still be average. The bleeding is heavy for the first few days (about 1 super plus tampon per hour) but the periods only last about 3 days total except for a little spotting for days 4 and 5. so overall that doesn't seem that bad to me.
I eat well and practice a very health conscious lifestyle. I exercise conscientiously when I am not too sick from the meds or from being off meds. I am usually normal weight (altho right now I am too thin, from the anemia I think). I have terrible trouble tolerating my meds (GI problems, lactic acidosis, other serious side effects) and am always trying to find a way to improve that with diet. The meds cause my cholesterol etc to go way way up, but no docs want to give me meds for it because those meds can increase risk of lactic acidosis, which I had a severe case of once, followed by elevated lactic acid on every med combo subsequently tried, to the point of having to stop meds b/c of these levels (I assume the first, severe case of lactic acidosis damaged my mitochondria and made me more vulnerable?). (docs say I must have genetic tendency to lactic acidosis for me to have such an abnormal tendency to get this side effect.) When the cholesterol etc readings go up I get worse side effects, such as lactic acid increases, GI side effects. I have never been able to continue meds beyond six months at a time because of side fx, and can't stay off for more than 6 months b/c T-cells fall below AIDS levels and keep falling.
So since the early 90s, when cocktail therapies came out, I have been on meds for 3 to 6 months, and then off meds for 3 to 6 months and that is my cycle, on and off like that for the last 13 years. After 3 months on I am too sick from the meds to work. After 3 months off I start getting too tired from HIV symptoms and having too many GI symptoms from HIV to work effectively. However, I still get to undetectable VL and T-cells in the 500s before I have to quit a med regimen. It's gotten so I know when it's time to quit a regimen. Docs pressure me to delay; I don't listen anymore; if it destroys the doc-patient relationship I have to move on to a different doc. (Finally the doc I have now is willing to work with me and believe me that this has to be my pattern, unless someone can find a solution to my med intolerance. I am an atypical patient, true, but I have survived an AIDS diagnosis since 1992 by doing it my way, and the one time I listened to the doc and stayed on meds while i got sicker and sicker, i almost died from lactic acidosis.)
The 2 times I got anemia I had been fighting the rise in cholesterol etc by experimenting with diet. The first time with a "raw foods" based diet (fairly low protein but also included beef about once a week and fish about once a week, also included nuts and cheese). The second time with a macrobiotic-based diet that also included beef about once a week and a lot of fish as well as protein shakes (but no citrus fruit and I worried about the vitamin c levels in that diet). Both diets were successful in helping me stay on meds longer, and keeping the GI side effects down so I could work longer, but both times I had to quit the special diets because of anemia. Right now my anemia-related readings are: RBC 4.5; HGB 8.7; HCT 29.8; MCV 66.1; MCH 19.3; MCHC 29.2.
When this latest bout anemia was originally diagnosed, almost 3 months ago, the doc said my B12 levels were slightly low and I got a couple of B12 injections before I started not having time to go get them (because I am struggling with work and school from being so tired from anemia). The doc didn't seem like he thought B12 was the real problem anyway.
What makes anemia a worse problem for me is I can't take iron supplements. My GI system is so destroyed from 14 years of med side effects that iron supplements are just not possible. I get alternating constipation and diarrhea as well as gas so offensive I have to quit my jobs. (sorry to say but it's my situation). In addition, taking iron supplements, in any form, even the liquid vegetarian ones, causes my whole abdominal area to become inflamed or something from the GI symptoms. The pain is extreme, the bloating is huge and my periods really do become extremely heavy and there is significant bleeding outside my period times. (I can never take anti-diarrheal medications, by the way, not even tincture of opium. All but the opium disrupt GI functioning in similarly horrible ways and all including the opium increase lactic acid if I'm on meds.) So taking iron supplements defeats the whole purpose, by causing excessive bleeding as well as such severe digestive upset, and my anemia only gets worse anyway when I try, in addition to my being homebound and in extreme discomfort. (even tho I have a really high pain tolerance.)
this doc has been saying since this bout of anemia was diagnosed that he was going to get me intravenous iron. but he is so busy (being one of the best docs in my large city, and his patients hardly ever seem to die because he's so good and he's a doc from the beginning of the epidemic so his practice just gets bigger and bigger) that he has not had time to do all the paperwork until now. the intravenous iron product is supposed to finally come next week and hopefully that will help. I am so tired I had to quit my job and move in with my ex but am managing to continue with my master's program (which is in a field that I can hopefully work from home in).
my questions are: (1) how bad is my anemia? with a hemaglobin of 8.7 and a hematocrit of 29.8, is this considered severe--to the point where I would have gotten transfusions if not for this intravenous iron product? I am just curious if it is that severe, or if it's still considered mild or moderate. (2) are there any other possible causes for my anemia besides what I keep hearing--"eat more beef" and "get your gyn to make your periods less heavy"? My gyn never thinks my bleeding is anything to take steps about. And I was always eating beef more often than other people, it seemed like, plus eating freshly juiced dark-green vegetable cocktails and all kinds of other vegetables (I only eat organic vegetables and organic meat, and the only non-organic things I eat are the things that don't come in "organic"). It just does not seem to me that my diet or my periods could be causing this severe of a problem. Yet my doc said he tested and there is no other cause. And I notice that my RBC count is even normal, so maybe he's right. Still, I don't understand. Could this be another rare genetic thing like my tendency to get lactic acidosis? (My gyn does think I have a connective tissue disorder, Ehlers-Danlos syndrome, because I am hyperflexible and have a few other signs I don't remember. A long time ago an orthopedist tested me for Marfan's (I don't have it). But I don't see how that could be related to anemia.) Or maybe my GI system is so damaged from all these years of med side effects that it is not absorbing nutrients? Is there anything I can do? I have never been examined by a GI doc, I talked to one once but he said since my GI system is normal off meds (no longer quite the case, but it was then) it was no use "torturing" me with the full exam. Should I see one anyway? A visit to a geneticist has also been offered as a matter of curiosity by one doc but I don't see how that is actually going to help me and I'm a little too tired and financially strapped b/c of my health situation to feel like donating extra time to medical science research yet (hope that doesn't sound selfish)
I've been off my meds now for 3 weeks b/c I was too weak from the anemia to tolerate the diarrhea any more, and also I am eating beef every day and I never last long on meds with that kind of diet b/c my cholesterol etc goes out of control and that seems to bring on a lot of symptoms. I wish medical science would figure out how to help me but my reactions are probably not common enough to hope for any help from that direction.
Response from Dr. Frascino
Your problem is complex and attempting to address all aspects of it would be beyond the scope of this forum. Suffice it to say that some of your assumptions are not true. For instance, all HIV meds do not cause lactic acidosis; anemia does not cause you to lose weight; iron does not cause "excessive bleeding." I'm glad you are now established with an experienced HIV specialist whom you feel comfortable working with. Hopefully he'll be able to sort some of these issues out for you.
Turning to your specific questions:
1. The normal hemoglobin range for women is 12-16 g/dL. Your value of 8.7 would be considered moderate anemia, but significant enough to warrant evaluation and intervention.
2. Anemia in the setting of HIV disease can be multifactorial. In your case one contributing factor is likely to be "anemia of chronic disease" resulting from your chronic HIV/AIDS. To determine if your monthly menstrual cycles are the problem, you could get a hemoglobin test before and after your period to see if the drop in hemoglobin is significant. If so, your gynecologist can help regulate your cycle. If that is not the problem, a trial of erythropoietin could be considered. Erythropoietin stimulates the bone marrow to make additional new red blood cells.
3. With your chronic gastrointestinal complaints and intolerances of so many medications, an evaluation with an HIV-knowledgeable gastroenterologist would be indicated.
4. I would also suggest you see an HIV-knowledgeable nutritionist. He or she could evaluate and help optimize your diet.
5. Finally, once you get those problems under control, hopefully you'll be able to tolerate an effective HAART (highly active antiretroviral therapy) regimen without having to interrupt your therapy every six months. A resistance test (genotype and phenotype) would be helpful in selecting your best options for treatment. Many of the newer medications are much better tolerated than those we were taking a decade ago.
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