Looking For Advice

[JohnnyGator]

If I am in the wrong area I apologize. If you would direct me to the correct forum, in the future, I will act accordingly. I am looking for some answers and I some how ended up here.I will attempt to give the short version of my dilemma.
I have been hospitalized twice in the last twelve months, both times for a minimum stay of no less than 10 to 17 days. It was discovered both times, by accident that my hematocrit was 20 , my hemoglobin was 7. I had a blood transfusion both times I was in the hospital. I also had infusions of iron, potassium. antibiotics, fluid etc: The doctor said he had not ever seen a patient with an iron level as low as ,mine. The first stay I had a DVT that became a Bi pulmonary embolism. I ran a low grade fever both times. I have had all of your standard GI test. multiple times with negative results. It appears I am not losing blood but, possibly I am not producing new red blood cells or. I am producing them at a rate not able to keep up with my body. I have a Doctors appt 5/2/08 with an internist from my last hospital stay. It has not been but a week since my discharge, so we will not be able to see if I am reticulating my blood. I have the usual specialist, GI, Hemo/ Oncologist, etc: I experienced most of the side effects while in the hospital. Low grade fever, rapid heart beat, shortness of breath. high BP, night sweats ( until I had the blood transfusion) I feel it is time to move past the GI docs and have the Hemo doctors begin to run test on my bone marrow and my blood work. I am not getting any answers or help. I am getting frustrated. I am a male. I will be 50 years old in less than 2 weeks. I was in relatively good health until, the incident last year. I have since steadily declined. I do not smoke, drink, or take illicit drugs. I was an athlete that exercised and watched my food intake very carefully until all of this reared it's head. I am fatigued most of the time and I do not sleep well. I found this site and thought I would reach out to the people on this forum. According to my short time here, there appears to be many people with a deep knowledge and vast understanding of this anemic / low iron dilemma. I have taken up more time and space than I intended but, as I am sure most of you are aware, I have given what I consider the bare minimum and could expound for days and, still not convey my thoughts or all the things that have transpired.

If you would be so kind to help me in the right direction or , share some of your thoughts, ideas or personal experiences with myself and the forum, I would be greatly indebted to you. Thanking you in advance.


JG

[Ruth Cuadra]

Hi, JG.

Welcome to Marrowforums. You've certainly had a lot of symptoms that can be associated with anemia/low iron/bone marrow problems. I think you're doing the right thing to see your hematologist to try to get to the bottom of these problems. If it does turn out that you have aplastic anemia or MDS, you'll want a hematologist who is familiar with bone marrow failure diseases. The average community-based hematologist will only know of these diseases from medical school and will probably have not seen any, or at most a few, cases in an entire career. In Birmingham, you are lucky to have an excellent center at the University of Alabama Birmingham, Comprehensive Cancer Center. I hope that you will be able to take advantage of their services, even if it is just for a second opinion regarding any diagnosis or treatment plan your own hematologist gives you.

Let us know what questions and concerns you have. Marrowforums members have lots of experience and are very good at helping each other.

Regards,
Ruth Cuadra

[Marlene]

JG,

I, like Ruth, think it's worth your time to see someone familiar with rare bone marrow diseases. There's no reason not to pursue another opinion.

Here's a a link on iron you may find interesting. It touches on reasons for iron deficiency. Hopefully they checked your copper serum, B12, folate and B6 levels also. Many times when one is low on a nutrient, others may be low also. It's important to get a copy of your test results so you can follow trends and document baseline levels. Is your iron still low?

http://lpi.oregonstate.edu/infocenter/minerals/iron/
Marlene

[Marlene]

This may give you more info to talk to your doc about. The one thing I forgot that this article states in causes is regarding urine. If it's tea colored or looks like there's blood, it could be due to red cells being destroyed and iron being dumped causing the color change. You can read about one these disorders on this site.....PNH. They should test your urine.

http://www.emedicine.com/med/TOPIC1188.HTM

[JohnnyGator]

I had 4 units of iron and , yes I believe it is low. After the blood transfusion, I think my hematocrit level maxed out @ 28. My B12 was checked and I was not deficient or low according to that particular test.I am lucky to live in Birmingham,Al. I was in Brookwood hospital last year and was just discharged from St Vincents hospital. I was there because of Dr. James Andrews, Andrews sports medicine.I had a rotator cuff procedure . They took my blood in the operating room, and that is when this last episode began. I was told last year I had rheumatoid arthritis. My blood inflammation level was just on the high side of the scale by a few points. I had the test preformed again and it was normal. Among numerous symptoms , I have , I have had diarrhea for about 2 years. All of my GI test did not reveal anything. I had all the test cultures to check for Celiac. They were negative. While in the hospital. I had surgery and was given opiates/ narcotics daily for 21 days. With all of this, it simply made me almost regular. I had the hemocults done almost daily. Upon discharge my severe diarrhea returned. I continued on an oral opiate 4 times per day.Tis did not have an effect at all.I am really puzzled about this anemia With all of the things that are going on , I have not lost any weight.I do not look sick and this is what many of my health providers say.. Thanks for your responses .All of your comments and suggestions are welcomed

JG

[Marlene]

I need to think about this some more but I think it's in your best interest to get copies of your records. Too many times they say "it's normal" when it's not; they can miss abnormal results; or something may be in a normal range but may not be normal for you because all prior test showed you higher/lower meaning that something may be happening and you need to watch for continued changes. And since you will be seeing other docs, it's good to have your history.

I assume they checked your stool for parasites. Also, just because you tested negative for Celiacs doesn't rule out gluten sensitivities. Here's a link to forum for gluten sensitivities/Celiac that's very active...you may find something here related to your issues. I can't help but think the anemia is related to this. But you never know....you can have "multiple things" going on. Have you stopped all gluten for a while to see if things improve? Gluten is in so many things....even medicines!

Have they suggested you see a Rheumatologist to rule out autoimmune problems?

If I think of anything, I will post but I know you must be going crazy trying to figure this out.

Marlene