Sudden drop in Hemogolbin- anemia

[Wayne G]

Had my first aortia mech valve in May and second in Sept ( leaking at sutures) since Sept I have beeen hospitalized twice with very low hemogolbin requiring 4 pints of blood each time. My level dropped from 10 (normal for men 17-14,they tell me is the best I can hope for is 10 with a mech valve.) To 5 in just 6 days. I have had a upper and lower GI and found no bleeds ( twice) have also had about all the blood tests known to man and they cannot figure out what is wrong. The Hemotologist tell me he thinks it's a valve problem and that the valve is licing ( chewing) up red cells, yet he can't explain how I can go two months with no problem and the wham my count drops in a week. Had 3 echo's since sept. and two TEE's and my card says it's not a valve problem but can't explain just what is wrong. The only thing they have found in common with both times is that my INR jumped to the high 4's about two weeks before my red cells crashed...anyone ever hear of this? any thoughts? thanks

 

[Nancy]

Wayne, my late husband Joe had this problem. He was under the care of hematologists. They decided that it was hemolytic anemia from his dual mechanical valves. He had a few upper GI tract bleeding problems too at times.

He was on ProCrit injections three times per week, iron pills a couple of times per day and folic acid (prescription strength). That combo worked well most of the time and kept his bloodwork slightly below normal, but not too bad.

I have to say that there were times, even with this regimen, that he needed transfusions.

It can be a difficult problem for some folks.

And to make matters worse, there was disagreement about the hemolysis, whether this was a true thing or not. Then when the GI tract thing came up, there was an "Ahah!" kind of reaction, as if it was the problem all along, but in actuality, it wasn't. That came much later in the course of things.

It's all very confusing. I suggest you get a hematologist involved. If it's not the GI tract, then there are things that can help you.

 

[briansmom]

I have been dealing with my son's anemia for about 9 months now. As I understand, they should be able to "see" hemolysis (destruction of cells) by the mechanical valve. If that is the case a stain with a real human being reading it should tell them something. Even with that IMHO you are bleeding somewhere. That is too severe of a drop to be explained by hemolysis. Are you on any acid reducers? Have they checked kidney function, etc.? Have they done iron studies? Procrit is wonderful, but I don't think that it will be able to help with this severe anemia. I would consider some other doctors, since these guys aren't getting it under control.
BTW, my son's was/is a combination of bleeding ulcer, puberty, not eating red meat, hemolysis from LVAD.

 

[Wayne G]

reply to your questions

reply to your questions

Thanks for answering...yes have been seen by a team of hematologist's during last stay at the hospital and will be following up with one Jan 15. Yes the stain did show that I have hemolysis but according to the surgeon and team of cards at Henry Ford Medical Center that would not explain why my hemeogolbin goes along just fine for months and then suddenly drops, if the valve was licing that severly it would be a constant thing rather than off and on. The hematologist has the same problem, why is this an on and off thing? and as far as the bleed they can't understand how that severe a drop can occur without any signs in my stool or urine, that type of loss is usually associated with trauma ( gun shot etc.) they have went so far as to ask if I have been to a third world country ( ebola, denge fever etc.) They have followed up on every unit of blood I recieved to make sure there were no anti body problems and the last test that I will find out about on the 15th is a full check of my immune system to see if something is caucing it to attack my red bllod cells but only once in awhile not consistantly. They have ruled out any cancer , liver, or spleen problem. Henry Ford is a teaching hospital so you can imagine whenever they get something unusual they come flocking in to see what its all about so have been seen by the head of all departments just to examine me with what I call thier little ducks that follow behind them just like they are the mother duck...

 

[geebee]

I hate to say it but it sounds to me like you have hidden bleeding somewhere. Back before my hysterectomy, my hemoglobin was up and down regularly. Monthly bleeding was bad but no worse than before the anemia started so that was ruled out. No other sign was found. We finally decided to do an exploratory laporoscopy since the thought was the problem was "female". They found endometriosis in the lining of my uterus and removed the uterus. There was an excessively unusual amount of bleeding that had occurred but it was "hidden". My anemia was immediately gone and has been ever since.

Now, I realize that you don't have the problem I had but I bring it up to show that there can be sights of bleeding that are not immediately apparent.

I wish you luck because not knowing can often be much worse than the condition itself.

 

[bvdr]

Had my first aortia mech valve in May and second in Sept ( leaking at sutures) since Sept I have beeen hospitalized twice with very low hemogolbin requiring 4 pints of blood each time. My level dropped from 10 (normal for men 17-14,they tell me is the best I can hope for is 10 with a mech valve.) To 5 in just 6 days. I have had a upper and lower GI and found no bleeds ( twice) have also had about all the blood tests known to man and they cannot figure out what is wrong. The Hemotologist tell me he thinks it's a valve problem and that the valve is licing ( chewing) up red cells, yet he can't explain how I can go two months with no problem and the wham my count drops in a week. Had 3 echo's since sept. and two TEE's and my card says it's not a valve problem but can't explain just what is wrong. The only thing they have found in common with both times is that my INR jumped to the high 4's about two weeks before my red cells crashed...anyone ever hear of this? any thoughts? thanks

Wayne, first of all, I'm so sorry you are having these problems. As you know, for most people it isn't so complicated. Was the reference that the best you could hope for with a mechanical valve is a hemoglobin of 10 meant for just in your specific case or in everyone with a mechanical? I've got St. Jude mitral valve and my hemoglobin hangs right about 16. Sometimes it is higher but I don't think it has tested below 15 in many years except in the initial first couple of months after I got the mechanical.

I too don't think that rapid drop in your blood count can be explained away with lysis from your mechanical valve. If you are having hidden bleeding somewhere then I would rather expect your skin color to be yellowish since as your body would reabsorb the blood it would break down somewhat like a giant bruise goes through a stage where it turns yellowish before it actually fades away. You may be in for an even more extensive work-up because it isn't acceptable to just treat the anemia with blood transfusions as needed. Please keep us informed. You really have me curious.

 

[Nan]

Hi Wayne,

Sorry, I don't have any insight to what you are experiencing....but just wanted to send you my best wishes and hopes that "they" will find out what is going on and will be able to remedy it easily.

Take care,

 

[Wayne G]

sudden drop

sudden drop

Have not experianced any jaundice at all, I too felt I must be bleeding somewhere but why don't I bleed all the time, how does it heal it'self and then rapidly drop in just a matter of days..had my CBC taken on a thursday and it was 10 the following tuesday it was 4.9 ..My cardo told me that mech valve patient's rarely go over 10 but maybe it's just me and the fact that I have a licing valve. I have been really working on my diet, I was WAY over weight at surgury and with a great deal of effort I have lost 30 pounds...I have no swelling of feet or hands. I agree I would think I would have more work up's but the hemologist seemed to "punt" at the hospital and told me my follow up visit in jan would be just to see the result's on my auto immune system. They took a ton of tests during my 6 days in the hospital following my last drop in hemogolbin and none of the specialists have suggested any further tests with anyone. Will push for more at nest appointment with cardo and hemologist...thanks

 

[briansmom]

I still would consider an opinion at another hospital. My son was also at a teaching hospital. They majorly screwed up. God save us from the ducklings!

Just to verify - full abdominal CT with and w/o contrast also?

Sorry we are not being more help here. Obviously, you can't let them wear you down. There HAS to be a reason.