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Low ferritin and symptoms
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Low ferritin and symptoms

I have predominantly left-sided sensory symptoms. Burning in my thigh, banding in my shins, paresthesias in my foot (sometimes my right big toe), facial numbness (not pain of the TN variety though!)

So if my ferritin is low, wouldn't that affect my entire body, not just half of it?

And how does low ferritin possibly mimic the vast array of MS symptoms? I have heard of low B-12, or Lyme disease. But not the ferritin issue.

Also, wouldn't low ferritin match up with low iron or anemia? HELP.

Suzanne
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Why and who ordered the ferritin test?  Or was it part of a regular blood work up?

I know nothing about it but it is compelling.

So sorry your Yale visit went the way it did.  Walking away again with no answers is a place that is hard to be.

Hugs to you...

Wanna
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Yes, the ferritin was part of the whole gamut of bloodwork.

CBC's, Lyme, thyroid, all done. Ferritin mixed in that batch. Guess it was flagged because it was low.

My pcp didn't seem fazed by it, told me to take a multi w/iron. I don't like to take pills, I gag on them. so (eek), I never did get any.

BUT, I did buy some today, and I did take my iron a couple of hours ago! It's tiny, so it's do-able. I have to take it 2x/day for 3 weeks. Oh man am I not looking forward to bathroom visits!!

Suzanne
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Suzanne,
  Iron is constipating, so I would recommend buying Colace at the drug store or its generic.  Colace is a stool softener, not a laxative.  Don't buy peri-colace, that is a laxative.

  As I have said before, Craig and I have been down a long road of doors being closed on us, so I would say to take the iron, get a new level drawn after the appropriate time, and if it is normal and you still have symptoms, time for another neuro appt.

  Good Luck,
  Elaine
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I was told to buy MiraLax. Walked into Rite-Aid and there it was, right smack in front of me. Not on sale though....wahhh.

Is Colace a better idea? The MiraLax is not supposed to be used longer than one week, and I have to do this hyper-iron thing for 3 weeks.

Althoughhhh, my hemoglobin is 12.1 (range 12.0-16.0)
My hematocrit is 37.1 (range 37.0-47.0)

I have been rejected from donating blood to the Red Cross a couple of times. My pcp feels it's not a big deal, just eat more iron and take the multi w/iron.

But this major deal of iron 2x/day seems to be overdone to me.........?? Like the neuro is trying to force the blood results to match her idea?

I may be wrong, but that's just the sense I get. Her demeanor was low key, almost non-sociable, seemingly bored by me (I told dh she seemed to "not like me".) But when the ferritin topic came up, boy, she became more interested like this was IT.

Frankly, it seems to be forcing the issue.

Suzanne
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I don't want to tell you to change the doctor's orders, but I would only start out taking one iron a day.   Does she want you to be sick to your stomach so you can be more uncomfortable in your body??  Sorry, but I am fed up today.

I think Colace is better and one iron a day is better to get your body used to things.

I am going to look up ferritin.  Will be back.  Is it ferritin binding capacity or ferritin??

Elaine
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In reference to blood test results, thing I have found in my personal experience is that to one doctor, a particular result…let’s say a low RBC as an example… “Doesn’t mean anything,” but another doctor might see the same result and a light bulb goes off.  One doctor cannot add 2+2, but another doctor can.

Maybe I’m not saying this correctly.  My point is, that a neurologist looking at your blood tests perhaps cannot add, but another type of specialist might.  I’m not suggesting you discount what the neuro suggest you do, but maybe you might try seeing someone other than a neuro??????  Have you been to other specialists? Again, I am only speaking from my personal experience, and having things ignored by a neuro that should have been red flags.  

And I am not trying to scare you…the iron pills might be the answers.

Does that make sense?

Wanna
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Suzanne,
  For females, the ferritin level is 12-150.  300 is for males.  That's what I found.

  Ferritin is the amount of iron you have stored in your body for future use.  Deficiencies can bring on anemia.  Causes are poor diet and GI bleeding and heavy menstrual bleeding.   Anemia brings on fatigue.

  I think your neuro dismissed you and blamed everything wrongly on low feritin.  My opinion.

  Elaine
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Wanna: I had the vertigo in December, hyper reflexes, bloodwork done same day as all of that. Suggested I see neuro to rule out MS or fibromyalgia. So that's where the neuro got put into the picture. Saw first one, he said I'm fine, saw my pcp, he sent me to MS neuro and that was where today added in the ferritin component.

Elaine: I had a hysterectomy in '99, so menstruation isn't it. My fatigue is transient, although deep down heavy-duty fatigue did appear earlier this year, seems to have let up a bit. Different than any other kind of "tired" that I have had over the years, even the kind with my periods.

I do agree with your opinion.........

Suzanne
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Wanna: I had the vertigo in December, hyper reflexes, bloodwork done same day as all of that. Suggested I see neuro to rule out MS or fibromyalgia. So that's where the neuro got put into the picture. Saw first one, he said I'm fine, saw my pcp, he sent me to MS neuro and that was where today added in the ferritin component.

Elaine: I had a hysterectomy in '99, so menstruation isn't it. My fatigue is transient, although deep down heavy-duty fatigue did appear earlier this year, seems to have let up a bit. Different than any other kind of "tired" that I have had over the years, even the kind with my periods.

I do agree with your opinion.........

Suzanne
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Hi. Sorry I don't know much about Ferritin levels. I did want to tell you though that you can buy an Adult chewable Multivitamin. I think it's Centrum. I found it at Walmart for my youngest daughter (she's 15 and has trouble swallowing pills also).

My neuro found out that I'm low on copper. ????She isn't sure if it's related to my neuro problems or not.

Good luck to you.
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Thank you so much; I didn't know they made adult chewables!

Suzanne
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147426_tn?1317269232
Okay, guys, ferritin is a sensitive measure of the iron available in the body.  Iron is an very important component of a whole host of metabolic processes, both in the body and in the nervous system.  One of the last things to start falling when the iron is low is the blood count, so "anemia" is a late indicator of iron-deficiency.

The brain functions rely on a proper supply of iron.  In pediatrics, kids that would come in with anemia, also had cognitive dysfunction, hyperactivity, irritability, difficulty concentrating and learning problems.  When we treated the anemia their behavior and mental function improved immediately.

I second the recommendation to take Colace (generic name docusate sodium) at least 100mg a day as you take your iron.  I would recommend it over the Miralax, but probably just because  I have more experience with it.

Quix

So, a very low ferritin does need to be addressed and actually could be adding to some of your symptoms.  All of them?  I don't know.

The neuro was rude and I'm sorry you had to go through that.  We'll have an especially hot bonfire this Friday and roast her thoroughly.
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Elaine: my dh came up with a plan for the 3 weeks I'm supposed to take this stuff. He thinks I should take 1 pill each day for the rest of this week, then take 1 pill, 2 pills, alternating for next week, and the 3rd week, take 2 pills per day.

As for the MiraLax stuff, take half the cap. It says only use it for 7 days, so I don't know.....??

Quix: I have taken Colace before, so I will get some today. I need to make up my mind soon, as I paid $21. for that MiraLax and if I'm not going to take it, I want a refund!!

As for the anemia, I will try this and see.

It is just difficult to take the advice of someone who makes you feel lower than dirt...even if she were 100% correct!!

Suzanne
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Good Morning Suzanne,
  I would return the Miralax.  If you find the Colace doesn't work, then you could always go back and buy the Miralax.  I know doctors here who have recommended long term use of Miralax, but they don't suffer the consequences, you do.

  Sometimes when I have used Colace when on vitamins. I have even increased the dose to 200 mg a day (100 mg twice a day) but 100 mg should be fine if you take it every day.

  Your husband has a good plan as far as taking the iron pills.

  Elaine
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I did go to return the MiraLax, but since I wrote a check, it has to clear first. I found the store brand of Colace, and knew you'd said something with a 100 in it, so I bought the one that was the 100 count.

But it's 250 mg.

I'm going to take it anyway, since I've had this tendency toward constipation for a good long time anyway, with adding the iron, I'm sure it will be necessary to have the extra help.

Thanks for your input and support, I do appreciate it!

Suzanne
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Bumping this topic up again just in case it is significant to rule out an MS mimic??

Anyway, I found some of my old lab work from back in 2003. I was having left-sided facial numbness and headaches back then, had an MRI/MRA, with contrast, and all was fine.

Back then, I hadn't mentioned the funky feeling of my legs being asleep when I woke in the middle of the night. But I vaguely recall these things.......

Skip ahead to the 2003 ferritin numbers, and the range was 6.2-107.

My number presently (well, in December) is a 5.

My number in 2003 was 71!!

So the mystery question is: do low ferritin/iron numbers cause paresthesias?

Also thought I'd mention that I bought slow-release Fe, and the store brand of Colace, and my digestive tract is just fine!

One of my girls wanted to try grits, and I wasn't interested. Just to humor her, I picked up the box and lo & behold, it had 45% RDA for iron. So guess what we had for breakfast? Listen to your kids cravings for unique breakfast foods. Actually, it wasn't so bad.

So.......... we'll see how this iron supplement stuff unfolds. Just thought I'd throw this out there.

Suzanne
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Thanks Suzanne.  I am glad your stomach is fine and  I think your plan mentioned in another post sounds good too.

Have you looked up food sources of iron??  I saw the grits mentioned and thought of it.

Elaine
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Yes, I looked at a lot of labels this week. I get shredded wheat cereal (the frosted kind!) and that has 90% for iron. But you have to check each brand, because they are not all alike.

I also noticed that some bread products are fortified, but I really try to watch what I eat carbs-wise.

One of the med students suggested I eat a spoonful of molasses each day. Well, the molasses I looked at had next to nothing compared to the grits or oatmeal or shredded wheat.

Suzanne
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184527_tn?1240977004
Please consider getting your Iron levels checked (Serum Iron). Before my Dx of MS I was always tired and had poor balance. Thought nothing of it, busy mom, busy lady. My Dr did a complete blood panel and said my CBC was fine 4.8 no Anemia, good red blood cells and hemoglobin 15.2 The gold standard to measure for Iron deficiency. 3 days later I was in the hospital with Optic Neuritis. I woke up with my left eye rolled up into my socket and no vision. I was scared. I was in the hospital for 9 days while they ran every test in the world. Finally on day 7 I was started on Solumederol and my vision and eye placement returned within 4 hours. During my stay I asked a nurse what my Iron levels where. She looked them up on the computer in my room they where way hard to find like on page 9 of my blood work. My CBC was on page 1 and all looked well. Anyways my Iron stores where at 17 ( range 40-175 ) We both looked shocked. I was immediately put on Iron injections. After 6 months my levels only went up to 27 and I was terribly constipated. I was introduced to a Liquid form of Iron ( FLORAVITAL or FLORADIX ) and told It would assimilate in my body better than the pill and would not cause constipation. Yeah Right! So I tried it and within 2 months my levels went up to 48. I feel wonderful, no fatigue and I lost 12 pounds without trying. I guess the increased energy burned the calories. NO CONSTIPATION, was the second best part. I began to research Iron Deficiency and Multiple Sclerosis and was surprised at what I found. I  would not try this until you know your Iron Levels so have your Dr do A IRON and IRON BINDING CAPACITY blood test and you will get a better picture. Good Luck!
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147426_tn?1317269232
Tahnks for your post.  You are correct that you can have a normal hemoglobin level but still be iron deficient.  The blood count and hemoglobin are about the last things to go.  The gold standard is actually the ferritin level, and is evaluated in combination with Iron Binding Capacity.  Serum Iron levels flucctuate too rapidly and are not accurate.  Ferritin is the most sensitive.

And thank you for emphasizing that low iron stores can have devastating effects neurologically.  Thought those effects typically resolve when the iron is brought back up, but in a small growing child, severe iron deficiency can harm normal brain growth and development.

What did you find out about iron deficiency and MS?

Quix
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230625_tn?1216764664
Thanks for this interesting thread.

I have always had a problem with low iron (I've been denied donating blood numerous times and was always on an iron supplement when pregnant).

I figured that with all of my CBCs being normal that my iron stores were normal as well.   Perhaps that is something that I can check on.
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184527_tn?1240977004
I have to differ with you in regard to the Gold Standard level of testing. Both my OB and family Dr have relied on my Hemoglobin to detect anemia. And apparently the Neuro in the hospital saw nothing wrong. I think that if the hemoglobin comes up low than they would suspect, and then confirm with the Ferritin testing. I know all Drs are different. I will try and find the info for you on Iron and MS or you can do a web search and find many articles relating. Thanks for your input.
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184527_tn?1240977004
Look up Low iron stores and Multiple Sclerosis. If you don't type in the searches correctly you may come up with less info. Again remember what you read on the internet isn't always true :) Or is It....
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147426_tn?1317269232
I do not doubt that you read something that said that what you posted.  Who ever said that is mistaken.  You are right that info on the internet is not always correct.

I should have explained that my information comes from my education.  I am an MD and I practiced General Pediatrics for 23 years, working up and treating scads of iron deficiency anemia, lead toxicity and all those things that go along with iron deficiency.  In evaluating the problem you look at the entire sequence of Hemoglobin, Red Blood Cell Indices (MCV, MCH), Red Cell Distribution Width (RDW), Serum Iron Level, Serum Iron Binding Capacity, and Ferritin.  The Ferritin level is the most sensitive test for showing low iron stores in the body.

I shouldn't have even commented on the issue, except I wanted to make the point that you can be iron-deficient and not be anemic.  I apologize for interrupting the conversation.  I hope, no offense taken.

Quix, MD
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147426_tn?1317269232
Peastalker - I'm sorry, I didn't see your post mentioning your various doctors.  Yes, the gold standard for detecting "anemia" is, indeed, the hemoglobin level.  However, anemia is not the same as "iron-deficiency."

I was referring to your post where you stated that the best test for detecting iron deficiency is the Hemoglobin level. You can be horribly anemic and have perfectly normal amounts of iron in your body.  Examples are the anemia of kidney failure, bone marrow diseases like leukemia, anemia of chronic disease, B12 and folate deficiency.  All of these can cause severe anemia with a normal or even excess amount of iron in the body.

The difference is the "Gold Standard for detecting Anemia"  (Hemoglobin level) and

The Gold Standard for Detecting Iron-Deficiency."  (Ferritin along with some other tests)

Suz - Yes, in answer to your question.  If your neurologic problem was caused by a metabolic deficiency like iron-deficiency, you would expect to see problems diffusely throughout the body.  It would be unlikely that a body-wide deficiency would cause multiple problems on only one side of your body.  So the low Ferritin doesn't adequately explain things, but you should treat it anyway.  And it may improve some of your symptoms.

Sorry for delving into the nitty-gritty.  These are minor points.

Quix
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I like nitty-gritty, am details oriented. I am pleased to see so much input on my question, and I thank every single person for taking time to contribute!

I was confused on the difference between iron-deficiency and anemia. I don't have any aberrations of my nails or things like that.

And yes, I do agree that the oddities on one side of me wouldn't flag an insufficiency in all of me!

But they don't have to be mutually exclusive, right?

Thanks again, I do appreciate everything!!

Suzanne
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184527_tn?1240977004
No offense taken.
I base my stance only on my personal experience with my doctors. While I was pregnant last year my OB just checked my Hemoglobin levels on a regular basis  (finger *****) and on my report would state no anemia. Same with my family Dr. When I specifically asked for my Iron levels only then were they tested. My question for you is this, " My iron levels where at 17 (40-150 range) would they have to be completely depleted to 0 or -0 in order for my hemoglobin to reflect  Iron Deficiency Anemia ?" Could a body survive on completely depleted iron. My dr said I was Anemic and put me on injections to bring up my stores. My confusion lies with the finger ***** (maybe that was what I considered The Gold Standard since I had it so often) states I am not Anemic but my Dr says I am. Here are my past results.  I am up in the 40's after 1 year. Iron 17(40-175 ) TIBC 221(250-450) Transferrin Saturation 4(15-50) Ferritin 5(10-232) So why do they still poke the finger? Thanks.
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184527_tn?1240977004
I am no longer confused........ Thanks! Also why was my word that sounds like stick before finger **** out. It was pick with a r between the p and i = *****. Oh, Now I get it :)
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Depends on the day. I don't know who Big Brother is, but he has his moments. Sometimes things slip through, other days they get starred out, what can I say. I wonder why a simple description of a medical test is considered something to be deleted, yet other things can remain.

Clueless.

Suzanne
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147426_tn?1317269232
I see, you do have a confusing situation.  No, with your iron stores, Transferrrin saturation and Ferritin as low as they are I would expect you to show marked anemia.

Are you sure that the blood test they are running on your Finger Poke (can't use the work pr*ck here, lol) is the Hemoglobin (Hbg or Hg) not the Hematocrit (Hct)?  You can get either from a finger poke.

Do you have the results of the first complete blood count handy?  What were the values of the MCH and the MCV?  What was your Hemoglobin level before they started the iron supplements?

Your iron studies would match the "hematocrit" (also called the "Crit" or the Hct) being at 15.  They do not match with a high, normal hemoglobin.  The normal range for a woman's hematocrit is about 34 to 42%.  The normal hemoglobin range for a menstruating woman is about 12 to 15mg per deciliter.

Also with your iron levels are you report them, your test (on the CBC) called the RDW should be waaaaay over 16, maybe into the mid-20's!

Anemia - this is the state of having too little "blood" ("an" - without, "emia"- blood)  In reality this translates into too little hemoglobin to adequately service the body tissues with oxygen.  You must have iron to keep making red cells and filling them with hemoglobin.  As the iron available in the body falls, many systems start malfunctioning and the central nervous system is one of the first.  But, then the bone marrow starts trying to conserve the iron and stretch it out.  First it starts making the red cells smaller, so there are more of them.  As the iron stores get lower, then the cells get less and less hemoglobin in them and they get pale (diluted).  By this time the Hbg and Hct are falling.

Your numbers don't make sense to me if they are telling you that your hemoglobin is in the high normal range.  When you start replacing iron the first thing that happens is that the bone marrow begins pumping out new red cells at a frantic pace, so the blood count comes up immediately.  Making new red cells uses up just about all the iron that is put in until the blood count is in the normal range.

When the blood count first reaches the normal range with treatment (so you are no longer anemic) the body is still in a state of iron-deficiency, because the stores are still depleted.

The final goal is not just a normal blood count.  Too many doctors stop iron supplements as soon as the blood count is normal.  When the anemia is resolved, you want to continue additional iron until the iron stores are built back up.  Because many other systems and metabolic reactions also require iron, and a pre-menopausal women has an ongoing source of blood loss.  So, typically the treatment of severe Iron Deficiency as you have include treatment for at least a couple months after the blood count is normal. This builds up the reserve of iron.  It also must include an intensive search for any other places you could be losing blood.  the most common is the gastrointestinal tract.

Question - Do you bleed easily?  Did you hemorrhage with the delivery?

I cannot answer your questions.  I apologize.   I cannot make sense of the numbers you have.  I see why you are confused, too.  If your first, original number of 15 was the hematocrit, then I totally understand what is going on.  If it was truly the hemoglobin, then I am mystified.

Quix
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In my particular case, am I understanding that I should go beyond taking 2 iron pills for 3 weeks as the MS neuro suggested? At least take one per day for the rest of my life?

And how can my Iron (74 in a range of 43-135) be fine

....but the Ferritin was low? (5 in a range of 11-307)

My WBC and RBC counts were also flagged as low (4.4 and 4.15 respectively).

What is MCH (89.4) and MCV (29.1)? Those appear to be normal.

Thanks,
Suzanne
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147426_tn?1317269232
About taking the iron for the rest of your life.  No.  Go back and reread the paragraph that starts, "The final goal...."  Taking iron when you don't need to can be dangerous and the iron can become toxic in the liver.

Serum iron is just the iron that is floating around in the blood stream outside of the red blood cells.  It can fluccuate a lot, will be higher if a person is on supplements and fall when they stop the supps.  It is an inaccurate way of knowing if the whole body has enough iron.

Ferritin is a protein involved with the amount of iron within the cells of the tissues.  It is the best indicator of the total body iron stores.  If it is low, there is insufficient iron overall in the body.

The MCV (mean corpuscular volume) & MCH (mean corpuscular hemoglobin) are measures of the size of the red cells and the amount of hemoglobin on average in the red cells.  Some of you may remember the old term red corpuscles for red blood cells.

The total white cells counts and the red cell counts are not that out of line.

Quix
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184527_tn?1240977004
Yep, it's official after your last post I am really confused. :) here is my complete blood report.

White cell -6.1
Red Cell.-4.4
Hemoglobin 12.1
Hematocrit 37.6
MVC 78
MCHC 33.7
RDW 15.4
Platelet 189
MPV 8.3
IRON 17
TIBC 221
Transferrin Saturation 4
Ferritin 5

Well regardless, Now I take an iron everyday and like I said my iron is now up in the 40's and climbing and I feel well. I just feel that having it so low was what triggered my first MS attack. During that last pregnancy I did miscarry @ 6 months and bled heavyley for a few days after but did not seem out of ordinary. Anyways thanks for your time and input into my unique situation.
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184527_tn?1240977004
These results are off the blood work from the hospital. My finger poke was 15.2 hemoglobin but withdrawl (withdrawal) 3 days later was 12.1 would poke vs arm draw have that much change?
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147426_tn?1317269232
At least we are all confused!  I aim to please.

The CBC you posted paints a picture of iron deficiency and the beginnings of iron-deficiency anemia.  Hemoglobin is still barely in the normal range at 12.1, but the cells are already getting smaller.  The Mean Cell Volume is 78 which is significantly below the normal range (84 to about 96).  There is not enough iron to go around so the bone marrow starts making smaller cells so that the reds cells that are produced have enough hemoglobin in them.  I don't see the MCH  which is the number that shows that the cells have started being short of enough hemoglobin.

The RDW is on the high side (upper limit 15), which is an indirect indicator of iron deficiency, but it's not off the charts.  I've had kids with RDW in the high 20's, but their hemoglobin was about 5!!

Okay, these numbers make sense for what you have been through.  The only number that doesn't make sense, then is the finger POKE  :)  of 15.  However, the finger poke method is the least accurate way.  Because of differences in blood flow in the fingers, especially if the hands are cold or the tech squeezes too hard, the value may be off -  sometimes way off.

I'm sorry I confused you.  I got all fixated on the high hemoglobin of 15.  You're fine and I'm glad you're feeling better.  When I treated kids for Cow's Milk Anemia, the mothers couldn't believe what a different child they had; less irritable, less hyperactive, listened and learned better, better mood, better sleep.  

Have a good night!

Quix
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Dear Quixotic,
you seem knowledgable about ferritin and anemia issues. I hope you can give me some advice with my dilemma. I am a 48 year old female with a history of breast cancer. Completed chemo in july 07 and radiation in sept 07 with no complications. Routine Jan 08 blood work showed I was slightly anemic. My results on Jan 08 were: hemoglobin, 11.1 hematocrit 33.0 MCV 83.1 Oncologist ordered Iron panel, ferritin was 8.Iron was 41, TIBC was 425 and Transferrin saturation was 10%.  referral to a gastro specialist, endoscopy, colonoscopy, fecal occult blood, smal bowel series were normal. repeated the blood work in April 08. Results from April 08 were: Hemoglobin: 12.5 Hematocrit 37.0,  MCV80.9,  MCH 27.3  RDW, 16.5  and Ferritin: 10. Gastro doc wants me to have iron infusion (dose:1gm). Since I am not anemic and my hgb levels from january improved without any treatment, do you think it is okay to go ahead with the iron infusion? I am reluctant to get the infusion as I read somewhere that iron is not good for cancer because it sitimulates the growth of blood wessels.  What do you think could be the reason for my low ferritin levels? Should the gastro doctor investigate it a little further before giving me the iron infusion?  I am also in menapause as I had my ovaries removed in Oct 07.
Thanks
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