Question:
Iron question just one more time.

Folks, I really need to hear from postop BPD/DS patients who have had severe iron problems. I am baffled because most of you seem to not have a problem with this but I am literally at the edge of death from this problem and the only way out seems to be iron injections 2x a week for a year and then iron 1x a week for life. This has been the recommendation since my blood transfusions. My body is NOT absorbing any vitamins or minerals at this point and honestly it's not just iron but that is the worst of it for now. Three doctors have told me that no matter how much I take in by mouth, my body seems to not absorb any of it. Someone said that this sounds more like a BPD and not the BPD/DS but I promise that I have seen the surgery notes and I had the BPD/DS. I just can't understand why this is happening to me when there are so many success stories out there. Please please, anyone else who has had a similar problem with the BPD/DS let me know. I know that there are at least 5 of us here in MS who are having major problems with this surgery but I don't think the others are online. We all had the same doctor and some of the people's problems are much worse than mine ie: needing a pacemaker for a lowered heartbeat and soforth because of lack of vitamins and minerals. What could have possibly been done to us that has not been done to you all to cause such problems? I know that I keep asking about iron and vitamins and such but, I am just confused and scared because this problem only seems to get worse with time. I went into the hospital for transfusions with a count of 4.8, came out with a count of 9.1 and am back down, a week later to an 8.1 already. Please don't suggest oral iron because i just can't absorb any of it enough to make a difference according to doctors here. Of course the surgeon will not say anything about it. Thanks for your help. Barbara Henson BPD/DS 6/99    — Barbara H. (posted on November 30, 2000)

November 29, 2000
Barbara, I am not a BPD/DS patient, but I am so very sorry to hear of your problems, and my heart goes out to you. I checked your profile and saw who your surgeon was. I happen to know his former partner has relocated to GA for his practice. Do you think you could contact him (Dr. Dennis Smith - [email protected]) with your concerns? Perhaps he dissolved his partnership for reasons you need to know about. I don't know what your personal financial and insurance situation, but if I were you, I'd be on the first plane going to see one of the BPD/DS surgeons with whom the other AMOS members have had such great success. From the problems you've described, it's time for the intervention of another surgeon. And perhaps a good attorney. I'll be thinking of you...feel free to write for support.
   — [Deactivated Member]

November 29, 2000
I am so sorry Barbara, what an awful predicament. I am a RNY patient and I honestly can't tell you what to do. I can tell you that I will say a prayer for you and the others who are facing these life threatening problems. I think one of the things I would be looking into is a malpractice suit, especially if there are a number of you from the same doctor. I will keep you in my prayers and pray that god will helpmyou to find the right solution or the right person to help you.
   — christine L.

November 30, 2000
I had RNY with an Ileum Bypass. I have the malabsorbtion problems too. I have pernicious anemia as an added diagnosis, but it is a trade off of no longer having Chronic Pancreatitis. My pills go straight through me. I just noticed it a couple of weeks ago. They were in the toilet 5 minutes after I took them. I now take my med with a warm liquid. I try to wait to take them just after a BM. And then try to keep my stomach as calm as possible afterward. I am 7 months Post-op, and have just a few strands of hair left!!! I do the protein, vitamins, and water, but they were coming out as fast as I put them in!! Good Luck and let me know how you are doing --
   — CohenHeart

November 30, 2000
Barbara: I found a really good website that details all the various forms and types of anemia and their causes and ways of diagnosing and treating these deficiencies.. I pray that this helps you find some answers or points you in a direction on where to go to get help ASAP.. My thoughts and prayers are with you.. <p> http://www.ohsu.edu/som-hemonc/handouts/deloughery/anemia.shtml <P> DIAGNOSING VITAMIN B12 AND/OR FOLATE DEFICIENCY <P> When a patient is believed to have a megaloblastic anemia or a process consistent with vitamin B12 deficiency, one should draw a serum vitamin B12 level, a serum homocysteine level (more sensitive indicative of tissue stores than serum or red cell folate) and since up to 30% of patients with megaloblastic anemia have concurrent iron deficiency, a serum ferritin. <P> One difficulty is that vitamin B12 levels are neither specific nor sensitive for vitamin B12 deficiency. Low "normal" levels have been associated with anemia and neurological disease in up to 30% of patients. Recently there has been interest in measuring levels of serum homocysteine and methylmalonic acids. These precursors build up in vitamin B12 deficiency and are more accurate indicators of tissue vitamin B12 deficiency. Increased levels of homocysteine and methylmalonic acid also are superior to vitamin B12 levels in predicting a response to vitamin B12 therapy. In patients with vitamin B12 levels under 350 one should check a methymalonic acid level to detect if tissue deficiency of vitamin B12 is present. <P> DETERMINING THE UNDERLYING CAUSE <p> In most of patients with folate deficiency, one can determine the underlying cause by history. The key concern in vitamin B12 deficiency is determining at which point in the complex pathway of vitamin B12 absorption the "lesion" is. The Schilling test is a test of vitamin B12 absorption. Patients are given radio labeled vitamin B12 orally and a large dose of vitamin B12 is given intravenously. The IV dose of vitamin B12 prevents binding any absorbed labeled vitamin B12 and this is excreted. The amount of excreted vitamin B12 reflects vitamin B12 absorption. The Schilling test is NOT a test of vitamin B12 deficiency but a tool to decide the etiology of the deficiency. The tradition Schilling test is called "stage I". If less than 8% of the labeled vitamin B12 is excreted then one can perform the Schilling test with a variety of diagnostic maneuvers to pinpoint the lesion. This includes giving intrinsic factor, pancreatic enzymes, or antibiotics. <P> The Schilling test has several shortcomings. One is it require patient cooperation in collecting the 24-hour urine sample. As noted above patients can have secondary malabsorption due to vitamin B12 deficiency. Several drugs including "slow K" will cause a false positive Schilling test. Finally the classic Schilling test will not detect abnormalities in patients with difficulties in dissociating vitamin B12 from food. The "food" Schilling test where labeled vitamin B12 is mixed with food has been proposed to detect this common group of patient. <P> Patients with pernicious anemia can be detected by assaying for autoantibodies but these tests can lack diagnostic specificity. Antibodies to IF are specific but not sensitive and antibodies to parietal cells are sensitive but not specific for pernicious anemia.
   — Victoria B.

November 30, 2000
Barbara, Your story breaks my heart. I URGE you to call an atorney specializing in medical malpractice IMMEDIATELY. When you said'of course the surgeon will not say anything about it', my blood boiled! let's see if he's willing to say anything aobut it when conronted with a lawyer's letter!!! Please, please do this while there's still time to save you. And yes, see other doctors, as many as you have to to get well!!!
   — Veronica D.

November 30, 2000
To those of you terrific folks who answered my question and have supported me all this time, I just want to say thank you so much. I have no idea what I would have done all these months without people like Melanie, Victoria, Donna, Michelle and all the rest who so obviously care about each and every one of us regardless of the type of surgery. I guess that I am alittle nestalgic this week of Dec 1, but I am so very glad to know that there are such loving people and I thank you from the bottom of my heart. Again, if there is anyone else experiencing iron problems (severe) or malabsorption problems, please write to me. I also wanted to say that my prayers and best wishes go out to each of you preops that are having surgery this month. You will do great and feel better than you ever have. Please remember that I am the exception and not the rule. Once again thanks to all of you.
   — Barbara H.

December 1, 2000
Barbara...your post really tugged at my heart. I agree with Denise B. You say you're on the edge of death... It's time to call in the experts in the field. Dr. Hess in Ohio is the Father of the DS; Dr. Anthone at USC in CA has been doing the DS exclusively for almost 10 years; and Dr. Rabkin in San Francisco also has years of experience with the DS. I would hop a plane and get some of their expert advise. It's extremely unusual for 6 patients of one specific surgeon to have this same problem, while patients of other surgeons don't suffer from this extreme iron deficiency. I have been iron deficient, not just anemic, but deficient for 20 years. I am now, 13 months postop DS and for the first time I can remember, my iron levels are normal. My heart breaks for you.. I hope you seek out he experts and find a solution to this soon. Please keep us informed of your progress, OK?! Take care for now....
   — [Deactivated Member]