I am chronically anemic and allergic to iron. Please help!
I have anaphylaxis in connection with oral or IV iron and was ordered never to take iron. I'm chronically anemic, plus I have excessive von Willebrande factor, fibromyalgia, unknown bleeding disorder, and other issues.
I've seen doctor after doctor and am getting nowhere. Please help!
Re: I am chronically anemic and allergic to iron. Please help!
jbeckley--Welcome to the boards!
I have never heard of anaphylaxis in connection with oral iron supplements. I guess anything is possible but I would say that it would be a rare occurrence. I was also told that I could not take iron by my GI doc but then when I got to my Hematologist he said to go back on it, and as bad as I didn't want to, I did what he said, because I was so desperate and it actually worked for me. I wonder if there isn't a weaker iron supplement that may get along better with your system? I thought that Von Willebrande factor was a bleeding disorder in itself. Do you have another on top of this? Are these the reasons for your anemia or have you ever had a diagnosis? Oh, I see you have Fibro too. Gosh you really have a lot going on. I hate to ask but are you still menstruating as well? A lot of your issues sound like a Hematologist may be in order. Do you have a good one? Or perhaps a good Internist? My experience is only with straight forward simple or not iron deficiency anemia. I wish I could help more. Keep us posted. Take care. FLFG
__________________ Best of luck to you! FLFLOWERGIRL
*****************
Hashimoto's Thyroiditis
Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
Fibromyalgia/Chronic Fatigue Syndrome
Re: I am chronically anemic and allergic to iron. Please help!
I am allergic to iron. I've been to three hematologists. The first gave me the IV despite my insistence that I've never been able to tolerate oral iron. The second wanted to test the IV again. I said heck no and went to the allergist who forbid me from having any iron orally or IV after I could not tolerate the desiccated liver tablets. Then I went to the third hematologist who did not allow me to give him my whole history because "I needed to realize that he was just a blood doctor". He told my GYN that he gave his approval for a hysterectomy (yes, I'm still in cycles) and told me to come back in a year if I felt like I needed to. He wouldn't even listen to me when I tried to discuss the iron allergy and possible treatments.
My von Willebrand is too high, which is the opposite of those who have bleeding disorders like hemophilia. My clotting factor is higher. I can't find a doctor who will take me seriously and really try to help me figure out this problem that has plagued me my whole life!
Thanks for writing to me!
Quote:
Originally Posted by FLFLOWERGIRL
jbeckley--Welcome to the boards!
I have never heard of anaphylaxis in connection with oral iron supplements. I guess anything is possible but I would say that it would be a rare occurrence. I was also told that I could not take iron by my GI doc but then when I got to my Hematologist he said to go back on it, and as bad as I didn't want to, I did what he said, because I was so desperate and it actually worked for me. I wonder if there isn't a weaker iron supplement that may get along better with your system? I thought that Von Willebrande factor was a bleeding disorder in itself. Do you have another on top of this? Are these the reasons for your anemia or have you ever had a diagnosis? Oh, I see you have Fibro too. Gosh you really have a lot going on. I hate to ask but are you still menstruating as well? A lot of your issues sound like a Hematologist may be in order. Do you have a good one? Or perhaps a good Internist? My experience is only with straight forward simple or not iron deficiency anemia. I wish I could help more. Keep us posted. Take care. FLFG
Re: I am chronically anemic and allergic to iron. Please help!
I forgot to mention that I have been having chest pains, heart palpitations, poor balance, confusion, and numbness in my lips and face. Also, people on my Mom's side of the family have had strokes and died of aneurysms. I wasn't able to get far enough with the last hematologist to share that information and my concerns about them.
Re: I am chronically anemic and allergic to iron. Please help!
jbeckley--You know it sounds like you have had really bad luck with iron (which doesn't surprise me) and Hematologists (which doesn't surprise me). Since the bulk of your problems is with blood related issues, from what I have learned from doctors I think that you should try another one. Or something that I have done also is to return to the last and try again. Sometimes, it seems that it's just the type of day that they are having or the mood that they are in. If it is only a co-pay for you I would give it a shot. All you need is one good doctor to listen.
So does this last Hematologist think that a hysterectomy will solve your problems? If you think that your menstrual cycle is the cause of your anemia then you have to stop the blood loss. I was told by my Internist that I was either going to end up with a blood transfusion or an ablation. He said what I really needed was a hysterectomy because the only thing that the uterus is good for after childbirth is to get cancer, his words. What is your Hgb level? Take care FLFG
__________________ Best of luck to you! FLFLOWERGIRL
*****************
Hashimoto's Thyroiditis
Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
Fibromyalgia/Chronic Fatigue Syndrome
Re: I am chronically anemic and allergic to iron. Please help!
Yes, he believes that a hysterectomy will give my body the ability to retain blood and bring up my iron level. However, I have a bleeding disorder that doctors have never been able to find a cause for. I've had several urine, pelvic, and rectal exams that showed blood loss my whole life. In addition, I've had sonograms since 9 years old that show pools of blood in my abdomen with no known source. I'm afraid that if I have the hysterectomy, I will bleed more internally and I have a theory that my body excretes blood when the iron starts building up because I'm allergic to it.
My hemoglobin count has ranged from highest at 12.1 down to 9.1 in recent years. I didn't know enough years before to track that. The last hematologist told me that my blood cells were small, but didn't explain what that meant for me.
I'm also afraid with a build up of blood that I'll have a build up of von Willebrand and end up with blood clots. I already pass a lot of large clots every month. Clots = heart attacks, aneurysms, & strokes. Weird thing is that I feel healthier and more energetic during those times of the month! As time passes throughout the month, I get more various pains and more emotionally distressed.
Quote:
Originally Posted by FLFLOWERGIRL
jbeckley--You know it sounds like you have had really bad luck with iron (which doesn't surprise me) and Hematologists (which doesn't surprise me). Since the bulk of your problems is with blood related issues, from what I have learned from doctors I think that you should try another one. Or something that I have done also is to return to the last and try again. Sometimes, it seems that it's just the type of day that they are having or the mood that they are in. If it is only a co-pay for you I would give it a shot. All you need is one good doctor to listen.
So does this last Hematologist think that a hysterectomy will solve your problems? If you think that your menstrual cycle is the cause of your anemia then you have to stop the blood loss. I was told by my Internist that I was either going to end up with a blood transfusion or an ablation. He said what I really needed was a hysterectomy because the only thing that the uterus is good for after childbirth is to get cancer, his words. What is your Hgb level? Take care FLFG
Re: I am chronically anemic and allergic to iron. Please help!
In that case I would think that it would be prudent for you to find a good Hematologist that will listen to you and get to the root of your problems so that you can move on and have that hysterectomy that you need. You do need to stop any blood loss that you have and it sounds like this is a culprit for you. Take care. FLFG
__________________ Best of luck to you! FLFLOWERGIRL
*****************
Hashimoto's Thyroiditis
Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
Fibromyalgia/Chronic Fatigue Syndrome
I am chronically anemic and allergic to iron. Please help! 
FLFG
