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So...I'm being treated by a hematologist. In May she was ready to start iron infusions b/c my ferritin was down to 5. Iron was 26, % sat was 6, RBC 3.95, hemoglobin 10.7 and hematocrit 32.1.

We did extensive GI rule-outs first and all was normal. She'd "prescribed" Flintstone vitamins w/iron in the meantime. I wasn't really clear on why she didn't go the heavy iron supplementation route-- though I think she mentioned it might be too hard on my stomach, as I'm having a lot of digestive issues already. That is, I'm having a lot of digestive symptoms, but all tests have come back normal. My husband thinks that the Flintstones were an experiment to see if I am now able to absorb iron, which it seems I am.

Repeat tests in July showed improvement: Ferritin 5.7, Iron 45, % sat 11, RBC 4.25, Hemoglobin 11.5 and Hematocrit 34.6. She concluded that I'd probably had a GI bleed, but that it had corrected itself. So, no iron infusions after all, as far as I know.

I will be seeing her again soon. If her theory about a self-corrected GI bleed is accurate, I'm assuming that my numbers will continue to improve. My question is--what about the ferritin? She did have me start taking 2 Flintstones rather than 1, but I don't see how the ferritin level is going to increase significantly this way. I keep reading on these boards about how people don't start to feel better until their ferritin levels are around 50 (though when I do other non-anecdotal research, I never see anything mentioned about low ferritin alone causing symptoms or even being of concern). I'm worried that my other numbers will be almost normal by my next appt, and that serious treatment will no longer seem indicated to her.

Should I push for the more standard iron supplementation? What would it mean if I were technically no longer anemic, but still had a single digit ferritin level? Any advice?
[QUOTE=Smargie;5217577]So...I'm being treated by a hematologist. In May she was ready to start iron infusions b/c my ferritin was down to 5. Iron was 26, % sat was 6, RBC 3.95, hemoglobin 10.7 and hematocrit 32.1.

We did extensive GI rule-outs first and all was normal. She'd "prescribed" Flintstone vitamins w/iron in the meantime. I wasn't really clear on why she didn't go the heavy iron supplementation route-- though I think she mentioned it might be too hard on my stomach, as I'm having a lot of digestive issues already. That is, I'm having a lot of digestive symptoms, but all tests have come back normal. My husband thinks that the Flintstones were an experiment to see if I am now able to absorb iron, which it seems I am.

Repeat tests in July showed improvement: Ferritin 5.7, Iron 45, % sat 11, RBC 4.25, Hemoglobin 11.5 and Hematocrit 34.6. She concluded that I'd probably had a GI bleed, but that it had corrected itself. So, no iron infusions after all, as far as I know.

I will be seeing her again soon. If her theory about a self-corrected GI bleed is accurate, I'm assuming that my numbers will continue to improve. My question is--what about the ferritin? She did have me start taking 2 Flintstones rather than 1, but I don't see how the ferritin level is going to increase significantly this way. I keep reading on these boards about how people don't start to feel better until their ferritin levels are around 50 (though when I do other non-anecdotal research, I never see anything mentioned about low ferritin alone causing symptoms or even being of concern). I'm worried that my other numbers will be almost normal by my next appt, and that serious treatment will no longer seem indicated to her.

Should I push for the more standard iron supplementation? What would it mean if I were technically no longer anemic, but still had a single digit ferritin level? Any advice?[/QUOTE]

my ferritin is also a 5 and my symptoms are terrible. I have loys of tummy troubles and have a hard time stomaching any iron pills. There is one by a company called garden of life, it is food based, I have no issues with that one.My doc didnt care much about how I feel. I just changed insurance company's and I am gonna see a new doc. If needed you need to switch doctors to get one that will listen! I hope you feel better!
Thanks for your reply!

What are your hemoglobin and hematocrit levels now? Has your ferritin increased at all? I am definitely going to check into the garden of life iron, since I certainly don't need any more stomach troubles!

I do really like my hematologist. My primary care doc ignored my anemia--she actually said it was probably genetic since my mother used to have it as well. It was both my dermatologist and rheumatologist who showed me graphs of my numbers going down. The dermatologist sent my PCP a note about it, and even then she decided to send me to the rheumatologist instead of the hematologist. I am definitely going to fire her!

The hematologist was pretty concerned about the ferritin level of 5, and said that she wanted to get me feeling better. She said that when you get to single digit ferritin levels it's pretty serious. I guess I don't quite understand how ferritin works, and am confused about the other numbers improving while the ferritin stays low.

What are your other symptoms? I'm dizzy a lot, constantly fatigued and my memory is shot. I also get rashes on my face. In fact, I had surgery last week and had an allergic reaction to the anesthesia--they responded to it quickly so there was no significant problem, but it left me with a flat rash on my face.

I hope you find a better doctor soon.
[QUOTE=Smargie;5217694]Thanks for your reply!

What are your hemoglobin and hematocrit levels now? Has your ferritin increased at all? I am definitely going to check into the garden of life iron, since I certainly don't need any more stomach troubles!

I do really like my hematologist. My primary care doc ignored my anemia--she actually said it was probably genetic since my mother used to have it as well. It was both my dermatologist and rheumatologist who showed me graphs of my numbers going down. The dermatologist sent my PCP a note about it, and even then she decided to send me to the rheumatologist instead of the hematologist. I am definitely going to fire her!

The hematologist was pretty concerned about the ferritin level of 5, and said that she wanted to get me feeling better. She said that when you get to single digit ferritin levels it's pretty serious. I guess I don't quite understand how ferritin works, and am confused about the other numbers improving while the ferritin stays low.

What are your other symptoms? I'm dizzy a lot, constantly fatigued and my memory is shot. I also get rashes on my face. In fact, I had surgery last week and had an allergic reaction to the anesthesia--they responded to it quickly so there was no significant problem, but it left me with a flat rash on my face.

I hope you find a better doctor soon.[/QUOTE]
W
Hi, I have no idea what my levels are at this moment because we just changes insurance and I haven't seen it new doc yet. As soon as my hemoglobin was norma my hemo doc said iI was fine even though my ferritin was a 7. Doctors say that ferritin should be in the 100 range. I lose my hair, feel dizzy, nausea, fatigue, anxiety, restless, short of breath, heart palpitations. It's terrible. I had no idea iron can make it person feel this way. I am thinking of doubling up on my garden of life iron. I like that you can open the capsule and put it in juice. I hate huge pills. Another one that didn't give to much trouble was nature's way iron. There is aalso a prescription iron you can get from your doctor. My obgyn gave me samples. It doesn't help that I have tummy troubles and heavy periods. Leafy greens seem to give me trouble. I am also confused about ferritin, I do know it is your body iron store's. It is the first thing to drop, so if your hemoglobin is low then the ferritin has been low for a while. Take vitamin c with your iron. Have you been tested for celiac? Have you always had an issue with anesthesia? That is scary! I get itchy skin from dryness. Celiac disease can cause rashes. I tested negative for it but think I have a sensitivity to it. I sure hope you feel better!!! We can keep in touch. We will get through this :)





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