Question About Iron Levels

[trents]

Need input about some blood work and iron levels. Dx with celiac disease 3.5 years ago. Was mildly anemic at that time,i.e., hemoglobin (iron transport protein) and hematocrit were below normal at that time. Doctor put me on an oral iron supplement for a couple of months and the H&H came back into normal range. Slowly over time H&H slipped back under normal and two months ago when I went to give blood at the blood mobile it failed the copper sulfate buoyancy test (i.e. the drop of blood didn't sink in the blue liquid). I put myself back on an over the counter iron supplement at that time and saw my PCP the other day to have my iron levels checked because I didn't want to get overload. Now the hemoglobin and hematocrit are well within normal range but the ferritin (iron storage protein) is at the very low end of normal. This is the first time I've had a ferritin test so unfortunately I don't have anything to compare that to. What's more, the RDW (red cell distribution width) is high (18). It has been high for sometime but in the last year has gotten worse. One year ago the RDW was 15 and now its 18. What is this pointing to, B12 or folate deficiency perhaps? Two things are curious here, one being that the ferritin is pretty low but the hemoglobin is towards the high end of normal after two months of iron supplementation. Does hemoglobin respond more quickly to iron supplementation than ferritin? The other is the worsening RDW. What is the relationship between RDW and hemoglobin vs. RDW and ferritin? Will it take a longer time for ferritin levels to respond than hemoglobin levels? If I continue to take an iron supplement to get ferritin levels higher will it get my hemoglobin dangerously high? I see my PCP again on Tuesday but I want some ideas to go armed with.

Steve

[jcc]

What's more, the RDW (red cell distribution width) is high (18). It has been high for sometime but in the last year has gotten worse. One year ago the RDW was 15 and now its 18. What is this pointing to, B12 or folate deficiency perhaps? Two things are curious here, one being that the ferritin is pretty low but the hemoglobin is towards the high end of normal after two months of iron supplementation. Does hemoglobin respond more quickly to iron supplementation than ferritin? The other is the worsening RDW. What is the relationship between RDW and hemoglobin vs. RDW and ferritin? Will it take a longer time for ferritin levels to respond than hemoglobin levels? If I continue to take an iron supplement to get ferritin levels higher will it get my hemoglobin dangerously high? I see my PCP again on Tuesday but I want some ideas to go armed with.

Steve

Increased cell volume (MCV) points to B12 deficiency, but I wasn't sure what increased RDW might mean. I tried looking here. It says that an increased RDW could be associated with pernicious anemia (B12 deficiency)

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But, since B12 deficiency can shows as a high MCV, and iron deficiency shows a low MCV... if you have both B12 deficiency and iron deficiency, it can sort of offset and show normal. I would suggest asking for a B12 level, methylmalonic acid, and homocysteine test to look for B12 deficiency. Also, a high folate level can cause a false increase in B12 level and mask a deficiency...which is why the methylmalonic acid and homocysteine tests become important.

I know much less about iron deficiency. As for iron deficiency and ferritin levels, you ask a good question. Both my daughter and I show normal iron tests, but our ferritin is low 20's. Our doctors think this is fine, but I have certainly read that optimal ferritin levels should be in the 70 range. Still, too much iron is dangerous so you don't want to supplement unless you really need to. Sorry I don't the answers on iron tests.

I have a great full paper on diagnosing B12 and folate deficiency, and lots more about B12 deficiency. If you are interested, please email or pm me.

Cara

[confusedks]

I too have a really low ferritin level. It was less than one (my doctor had NEVER SEEN numbers so low). They say it should be 3-130. This is obviously a huge range and i have a hematologist, who told me i needed iron IV treatments stat. I did about 6 weeks ago and my ferritin went up to 130!!!! Now, 6 weeks later its back down to 40! My hemoglobin is at 15 which is the highest it has ever been. When i started with the anemia, it was at 8.2!!!! It has slowly come back up ( i ant tolerate oral iron) so through diet, it slowly came up. But, my point is that your ferritin should be calculated by a hematologist because my GP and OB/GYN saw the 40 and said it was fine, but I told my hematologist and he said that was low for me. It should be at 100, for my height, weight, age, etc. So, do you have a hematologist because my experience is that most GP's don't know exactly which tests to run. They will also take into consideratiion your iron binding capacity, iron saturation and one other...cant remember the name. So some people have low ferritin, but normal IBC, Hemoglobin, etc. and thats normal for them. The most important thing, is do you feel anemic? But i would suggest a Hematologist. Hope this helps. Feel free to email me... knshore@hotmail.com

[confusedks]

I too have a really low ferritin level. It was less than one (my doctor had NEVER SEEN numbers so low). They say it should be 3-130. This is obviously a huge range and i have a hematologist, who told me i needed iron IV treatments stat. I did about 6 weeks ago and my ferritin went up to 130!!!! Now, 6 weeks later its back down to 40! My hemoglobin is at 15 which is the highest it has ever been. When i started with the anemia, it was at 8.2!!!! It has slowly come back up ( i ant tolerate oral iron) so through diet, it slowly came up. But, my point is that your ferritin should be calculated by a hematologist because my GP and OB/GYN saw the 40 and said it was fine, but I told my hematologist and he said that was low for me. It should be at 100, for my height, weight, age, etc. So, do you have a hematologist because my experience is that most GP's don't know exactly which tests to run. They will also take into consideratiion your iron binding capacity, iron saturation and one other...cant remember the name. So some people have low ferritin, but normal IBC, Hemoglobin, etc. and thats normal for them. The most important thing, is do you feel anemic? But i would suggest a Hematologist. Hope this helps. Feel free to email me... knshore@hotmail.com

[anemic]

I too have a really low ferritin level. It was less than one (my doctor had NEVER SEEN numbers so low). They say it should be 3-130. This is obviously a huge range and i have a hematologist, who told me i needed iron IV treatments stat. I did about 6 weeks ago and my ferritin went up to 130!!!! Now, 6 weeks later its back down to 40! My hemoglobin is at 15 which is the highest it has ever been. When i started with the anemia, it was at 8.2!!!! It has slowly come back up ( i ant tolerate oral iron) so through diet, it slowly came up. But, my point is that your ferritin should be calculated by a hematologist because my GP and OB/GYN saw the 40 and said it was fine, but I told my hematologist and he said that was low for me. It should be at 100, for my height, weight, age, etc. So, do you have a hematologist because my experience is that most GP's don't know exactly which tests to run. They will also take into consideratiion your iron binding capacity, iron saturation and one other...cant remember the name. So some people have low ferritin, but normal IBC, Hemoglobin, etc. and thats normal for them. The most important thing, is do you feel anemic? But i would suggest a Hematologist. Hope this helps. Feel free to email me... knshore@hotmail.com

What has happened since the infusions? I have the same problem. The infusions worked for a while but began to level off. I am waiting to see my hemotologist. I've had 10 infusions which should have brought my iron to over 200 but I can't get past 100.

[grey]

What has happened since the infusions? I have the same problem. The infusions worked for a while but began to level off. I am waiting to see my hemotologist. I've had 10 infusions which should have brought my iron to over 200 but I can't get past 100.

I have similar things happening too. My ferritin is 6.8 (ref range 11-306) and iron 62. My doctor said it meant that I wasn't absorbing iron as well, but I still had some in storage. I can't tolerate oral supplements at all (even gummy vitamins for kids).

I have (and have had) a B12 def. for a while- dx as pernicious anemia 3 years ago. I used to get shots every 3 weeks, but I've had to up them considerably because I feel like I'm constantly on my last legs. Now I'm getting them weekly. (GP got recommendation/advice from a hemotologist, but I haven't seen one).

Infusions sound somewhat scary.

How does the hematologist sync up with the gastroent. for y'all? [i'm very new to this (just got positive TTG and not gluten-free yet).] Do you think the celiac caused the anemia or that they're seperate?

thanks,

grey