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Forum Name: Hematology Topics

Question: Low Iron & B12 - Infusions not helping


 keewester - Tue Mar 01, 2005 8:15 pm

Hi there,

I am a 41yo white female in central Florida with relativly low stress, married 18 years, 2 adopted children. 7 brothers and sisters all healthy. I was always a normal weight until I got married in 1986. I battled back and forth with diets, excercise, etc for 15 years. The highest I've weighed was 226 and that was just 10 months ago. As I sit here typing this, I am now 135. I did not try to lose weight. It's just gone.


In June of 2004 I started losing weight, just a few pounds here and there but hadn't altered my eating. I was getting more excercise at work - walking A LOT. So I figured that was the reason. Then I spent much of July vomiting on a daily basis. I would not get nauseated, it would just happen out of the blue with little warning. One day when I got sick, I lost a good 8oz of yellow fluid and thought "Ok NOW we go to the doc" My GP sent my blood out for testing and a few days later informed me that I have H Pylori Disease (HPy count was 1660) and that is causing my weight loss (then 40 pounds or so) and vomiting. They put me on a round of triple antibiotics and I went back 10 days later. I was still vomiting and down another 11 pounds. They then sent me to a Gastro Doctor.

He took some blood, did an exam and set me up for an Endoscopy. That turned out fine, he found no problems. He said he was concerned with my blood counts and took more blood. The day after I was to go for a upper and lower bowel series and the following week, a colonoscopy. The next day I could not hold down the barium and started vomiting quite a bit. There was a quarter size dollop of blood in the vomit and my husband called the doctor. They advised us to go to the ER immediatly, the blood work just got back and it was not good. That was August 19th 2004 (in between Hurricanes no less)

I was in the hospital for 9 days. I had every test imaginable, colonoscopy, MRI's and/or Catscans of my brain chest and stomach, doppler radar (or something like that...) on my legs, Sonograms & a Bone Marro Biopsy (what a joy that was, I'd rather have 3 colonoscopies) I bet I also gave them 10 pints of blood while I was there. :)

I never saw the same attending twice. It was so confusing, my Gastro Doctor came in twice but I barely remember it. He pretty much cleared me of any Intestional problems. The doctor that released me had a good 10 min talk with myself, my husband and my father in law before I left. Not one of us understood a thing he said. The nurse in the room also didn't understand. I followed up with one of the Hemotologists that saw me while there.

I know that my SED rate was as high as 93. My Hemoglobin was as low as 7 and my iron was at 6. I don't remember my Hematacrit.... I do have the documentation though. All tests except bloodwork came back normal or near normal. One of my stomach scans did show an enlarged spleen.

They ruled out any cancers. They told me I had severe iron and B12 deficiency and had to have Iron Infusions & B12 shots starting immediatly until my iron levels increased. They discussed the possibility of a Blood Transfusion but I've never had one.

Last week I had my 7th Iron Infusion and 10th B12 shot. My iron is at 12 as I type this. I am constantly weak. I get dizzy if I bend over to do something and stand up again. I'm pale with dark circles under my eyes and I'm just tired of all this. My hemotologist suggested I may have Celiac Sprue, I've looked that up and have NONE of the symptoms except Anemia.

I don't know how much more of this I can take. I know there was no iron in my marrow at all. I know my body won't absorb it. I eat foods rich in iron, I take iron & b12 supplements as well as my monthly infusions.

I continue to lose weight at about 10 pounds a month. I have little or no appetite and I have zero strength & energy. My family is worried, my employers and employees are worried and quite frankly, so am I. There has got to be something someone missed.

I don't know where else to turn. Can someone please shed some light on this mystery. I would be so very grateful.

Thank you for your time.

Ironless in Orlando
 Rogue - Tue Mar 01, 2005 9:57 pm

Hi kewester,

I wish I could help you. Being anemic myself, I can sympathize with how you feel, but unfortunately, I'm as baffled by my own condition as you are about yours.

I just wanted to wish you all the best. I hope you find the solution to your problem soon.

Good luck!

PS I'm sorry if my post is in any way inappropriate, I was just touched and had to say something.
 Its Me Jan - Thu Oct 20, 2005 9:57 pm

Wow, I'm glad I found this website.
My iron went from an "11" 2 months ago to an "3".
I'm told that I need to go see a blood specialist on the 27th for blood infusions.
Do they hurt? How does it work? How soon until I feel better? How long do the treatments take, 1, 2, Hours? What is the pre treatment like? What is it for?
I have lots of questions! I appreciate any feed back I can get. I'm nervous! :roll: Thanks! Jan
 betm - Sun Oct 23, 2005 9:00 am

I am in the same boat. Low iron levels that just will not come up. I also have to see a Hematologist this week and have a lot of concerns. My PCP wants me to have iron infusions. I have lots of questions about them and am nervous. I read somewhere that there could be side effects from them. The Dr held off sending me for them because I have asthma--I am afraid of having side effects that will bother it.

Anyone going thru infusions that can give a little in-put as to what they are like would be appreciated.

Betm
 Its Me Jan - Tue Nov 22, 2005 10:31 pm

I too have asthma. I had my infusion and didn't have any difficulties. My iron went from a 3 to a 12 in one infusion. I'm dissapointed that my doctor thinks a 12 is enough as I'm still dragging! My doctor did the infusion very very slowly. It took 12 hours and I was in the hospital 13 hours in total but I think it was for the best! Jan Feel free to PM me with any questions, Jan

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