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-   -   Very low ferritin, moderate anemia? (https://www.healthboards.com/boards/anemia/559290-very-low-ferritin-moderate-anemia.html)

steph74 12-07-2007 07:29 AM

Very low ferritin, moderate anemia?
 
Hi everyone,

I've been having problems with anemia off and on since I was pregnant with my second daughter. I've had the gamut of symptoms, SOB, palpitations, fatigue, etc., the worst of which was my daughter was growing too slowly prenataly--luckily iron supplements really helped and her growth caught up.

Not wanting a repeat of that 4 years later with my third, I was supplementing from the get go. My hemoglobin level dropped even further that time to 8.5. I ended up taking 3 SlowFE a day and my daughter was born three weeks early...

So now, a year and a half later, I start having weird symptoms again--palpitations, swollen feet and hands, SOB, fatigue, you all know. I went to the doctor and the bloodwork came back with hemoglobin of 9.7 (which I tend to think of as "mild to moderate" anemia) and my ferritin level is 1! Yes, 1. Why the discrepancy? The doctor was very agitated about how "severely anemic" I am--she said she would transfuse me except for the risk of HIV. I'm a little confused. Which number is more important?

I pretty clearly have iron-deficient anemia and now the question is why. I am a vegetarian, but I eat a VERY healthful diet and include many sources of iron. (Of course everyone secretly thinks it's my diet, but I don't.) I have an appointment with a GI doctor and wore a holter monitor last week--still waiting for the results.

So here are my questions--

(1) Which level, hemoglobin, hematocrit, ferritin, etc. is the most important number here?

(2) Are swollen hands and feet a symptom of anemia? (This one is new to me!)

(3) I'm taking 2 slowFE a day (three was pretty intollerable). Is this sufficient?

(4) Should I be seeing a hemotologist instead of an internist?

Sorry for the overly long post...

Thanks!

ChristineVA 12-07-2007 07:41 AM

Re: Very low ferritin, moderate anemia?
 
[QUOTE=steph74;3340340] Yes, 1. Why the discrepancy? [COLOR="Red"]There is no discrepancy with this. I would fully expect your hemoglobin levels to be low with a ferritin of 1. My hemoglobin dropped down to 11 when my ferritin was at 5, so it makes perfect sense to me.[/COLOR]The doctor was very agitated about how "severely anemic" I am--she said she would transfuse me except for the risk of HIV. I'm a little confused. Which number is more important?[COLOR="Red"]She is probably concerned with both numbers but the almost non-existent ferritin is probably what is most alarming to her. You have no stores left--this is why you can't properly make red blood cells.[/COLOR]

I pretty clearly have iron-deficient anemia and now the question is why. I am a vegetarian, but I eat a VERY healthful diet and include many sources of iron. (Of course everyone secretly thinks it's my diet, but I don't.)[COLOR="Red"]Even the BEST vegetarians have a problem with iron. While you may be eating TONS of iron rich veggies, it is non-heme iron and it is poorly absorbed. Even when you do everything to maximize it, you are only getting a tiny amount of it from your food. I just finished reading The China Study. The author is a HUGE proponent of a vegan diet and all its associated health benefits. But he even says that if you do this, you really need a B12 and iron supplement. It is extremely hard to get it from a veggie diet. Also, our food quality has gone down to boot so the nutrients just aren't there.[/COLOR] I
(1) Which level, hemoglobin, hematocrit, ferritin, etc. is the most important number here?

[COLOR="Red"]Ferritin is the most important for monitoring the status of your iron deficiency. Once it is determined that you are iron deficient, ferritin becomes *the* number that is looked at. However, hemoglobin and hematocrit are extremely important while you are in the stage of anemia. You want to see that go up quickly, or at least stabilize.[/COLOR]

(2) Are swollen hands and feet a symptom of anemia? (This one is new to me!)[COLOR="Red"]I never had this problem myself but that doesn't mean it's not a problem.[/COLOR]

(3) I'm taking 2 slowFE a day (three was pretty intollerable). Is this sufficient?[COLOR="Red"]For as low as you are, I'd say that it is going to be a long, slow climb out of it. Sounds like you need a prescription iron to me.[/COLOR]

(4) Should I be seeing a hemotologist instead of an internist?[COLOR="Red"]As long as you know the reasons for your anemia and the internist is responding appropriately, I don't believe a hematologist is needed. However, if you are not responding to basic treatment or you don't know the cause, a specialist would be the next step.[/COLOR]

[/QUOTE]

FLFLOWERGIRL 12-07-2007 08:49 AM

Re: Very low ferritin, moderate anemia?
 
Steph--When I was dx'ed with anemia my Ferritin was a 2 and my Hgb was 8.6. My experience was within 2-3 days of 3X Ferris Sulfate (which I do not recommend) daily I went to a 3, that somehow sounded better to me than a 2 LOL. At least you caught it in time that you do ~not need~ a blood transfusion. Transfusions are usually given around a 7 Hgb. You are not mildly anemic you are definitely moderate. And... I do believe that an iron script strength is needed. I take Poly Iron 150mgs X2 daily for a year in Jan. to fill those iron stores and fix the anemia.

Are you still having periods? This is usually the reason for most IDA in females. Most all of the people that are on this board have had GI testing to r/o internal bleeding or absorption issues. You may want to discuss this with your doctor. These are just some of the reasons for blood loss. If you are having periods and/or a diet of veggies that is enough to cause your blood results to be sooo low. I think this was a lot of my problem I was not replacing iron fast enough over a long period of time. I had Resistant Iron Deficiency Anemia for 6 months because I was unable to take the right amount of iron and still had periods. Because I was responding slowly to the iron they did not infuse me with IV iron or transfuse me with blood.

I did not have a problem with swelling either. I had palps very badly, especially after eating, for many months. As soon as the anemia resolved it went away. Always check it out but know that it is a common symptom for many. FLFLOWERGIRL:)

steph74 12-09-2007 06:29 PM

Re: Very low ferritin, moderate anemia?
 
Thanks for the responses. I have an appointment with an internist on Tuesday (not the dr. I originally saw, didn't like her, but that's another story). Then the following week I see the GI dr. I am having occasional bleeding (no need to be graphic here...) so that is certainly one possible cause.

I am interested to see what this other dr. says about my symptoms though. The palpitations are getting worse, the SOB is almost constant, and I've checked my blood pressure a few times and it's been "borderline" high--systolic at ~135 (normal for me is ~105/65).

I am still menstruating, so this of course doesn't help things. I've been taking iron for 3+ weeks now and if anything, I'm feeling worse. I know it takes a while, but I guess I need to be more patient.

Sunne73 12-10-2007 07:29 PM

Re: Very low ferritin, moderate anemia?
 
[FONT="Comic Sans MS"][COLOR="Green"]Hello all fellow anemics. I have chronic anemia currently thought to be caused by hypermenorrhea. I take two Slow FE per day in addition to the iron in my daily multi-vitamin. I have been taking this for several months and I am still in the moderate range for Iron and Hemoglobin deficieny. I have no idea what my ferritin is. I have the usual gambit of symptoms, chilly all the time, fatigued, arrhythmias irritability etc. However lately, when I take my medication I get nauseous and vomit...whether I take them with a bit of food or not. I feel better soon after but I not a fan of those feeling regardless. I have read than iron toxicity can initially cause gastrointestinal disturbances but my Iron levels are still low. Any thoughts?[/COLOR][/FONT]

ChristineVA 12-11-2007 03:56 AM

Re: Very low ferritin, moderate anemia?
 
It could be that those particular iron supplements just don't agree with you.

Sometimes the types of binders they use in slow release pills can cause nausea issues. You may want to try a regular type of iron

I remember when Prilosec first went over-the-counter. I had been taking it just fine in its prescription form. When it went OTC, they changed the formulation--it's a tablet versus a capsule. Whatever the the binder was in the OTC tablet made me HORRIBLY queasy, so I can't take it.

I suspect that something in the Slow FE, rather than its iron component, is bothering you.

steph74 12-18-2007 12:34 PM

Re: Very low ferritin, moderate anemia?
 
I had my appointment with the GI doctor yesterday. He was really nice (and didn't seem to mind at all that I had to bring my 17 month old with me!) I have to have a colonoscopy and an upper GI endoscopy next month. Not really looking forward to that. :( He thought there was some possibility of IBD, but not making any predictions. He also was concerned about my reticulocyte count and suggested seeing a hemotologist (and also suggested I might need a bone marrow biopsy!) I'll hold off on that until I see my internist again next month and see how I'm responding to the iron.

Speaking of iron, my stomach is not pleased with all this iron. Luckily I'm not constipated, but I am uncomfortable (and the dizziness continues--it's starts within an hour of taking the iron, so I'm pretty sure it's related). I think I'll try another formulation.

Does anyone know what petechiae could indicate (or if it's just benign, related to the high platelets, which are related to the anemia?) He mentioned a few tiny red dots on my lip--I have them scattered about my body, mostly on my torso, but I never gave much thought to them as they come and go. He seemed interested in them, but didn't mention why.

Also, has anyone else had the colonoscopy before? I'm concerned about the "prep". I have it scheduled for a Friday, but I realized I'm going to have to reschedule to a Monday, otherwise I'll have to take Thursday off of work, too (I don't think my hour commute on the train will work too well with the laxatives etc.)

ChristineVA 12-19-2007 07:44 AM

Re: Very low ferritin, moderate anemia?
 
I was getting a lot of petechia when I was taking Ibuprofen. I guess it was thinning my blood. I was also getting them after I had an allergic reaction to a medication. My doctor did a PTT test which tests for your clotting time. Mine was normal as were my platelets. I don't think high platelets would cause that, but rather low platelets.

There are also autoimmune type disorders that will cause vascular destruction that would cause the petechia.

As for the prep, it wasn't too bad. I used the Osmoprep tablets and that was easy enough to do. My colonoscopy was on a Wednesday and I did go to work on Tuesday. I didn't eat solids that day at work but didn't start my prep until 5:00 p.m. That was fine.

I think a Friday colonoscopy is great because you can recover from it. I had a reaction of sorts to my anesthesia and was sick as a dog and couldn't go to work the next day.

steph74 12-19-2007 08:30 AM

Re: Very low ferritin, moderate anemia?
 
Thanks for the info Christine. I don't take ibuprofin (or any other NSAIDs) at all--it upsets my stomach. I'll ask my internist about it in January.

What time of day was your colonscopy? Mine is at 9 am and there I'm supposed to start the prep 24 hours ahead of time. I think there's a newer (better) prep out there. My dr prescribed the gallon of liquid to drink. I'm going to ask about changing that to the newer thing.

Stephanie

ChristineVA 12-19-2007 10:18 AM

Re: Very low ferritin, moderate anemia?
 
[QUOTE=steph74;3356081]Thanks for the info Christine. I don't take ibuprofin (or any other NSAIDs) at all--it upsets my stomach. I'll ask my internist about it in January.

What time of day was your colonscopy? Mine is at 9 am and there I'm supposed to start the prep 24 hours ahead of time. I think there's a newer (better) prep out there. My dr prescribed the gallon of liquid to drink. I'm going to ask about changing that to the newer thing.

Stephanie[/QUOTE]

Yes, the newer and better prep are the OsmoPrep tablets. Ask for those, you won't regret it.

My colonoscopy was for 8:30 a.m. and I had to start my prep at 5:00 p.m. However, I did have to start the "liquids only" part of the diet the day before my procedure.

FLFLOWERGIRL 12-19-2007 06:21 PM

Re: Very low ferritin, moderate anemia?
 
My friend just had a colonoscopy and I told her to ask for the Osmo Prep. She said they offered it to her but she would just go with the old prep. Well, since then she said NO WAY ever again. The next time she will take the Osmo. I tried to tell her. I think that it's a great choice too. FLFLOWERGIRL:)

Tulsarunner 12-28-2007 12:03 PM

Re: Very low ferritin, moderate anemia?
 
The preparation for the colonoscopy is definitely the worst part. I had one two weeks ago after we discovered anemia during a kidney stone incident that took me to the hospital (HBG of 9 and ferritin of 8 , and who knows how long it had been that way!) They didn't find anything at the colon/endoscopy, but it's an important thing to rule out, so it's worth it.

Just know that it will be several days to a week for everything to get back to normal, digestive-wise.

steph74 12-31-2007 11:10 AM

Re: Very low ferritin, moderate anemia?
 
Well I think I have an answer as to the cause of the anemia.

My GI doctor just called and said the blood work for celiac disease (also called celiac sprue) is highly positive. He still wants to confirm it with a small intestine biopsy (no colonoscopy, yeah!) but he's pretty sure that's it.

I'm going to continue to eat wheat until the endoscopy (dr. said to). I'm upset to have a problem that requires such massive dietary change, but happy to know what it is and that it is treatable. There are so many worse problems to have, I know.

Stephanie

ChristineVA 12-31-2007 12:40 PM

Re: Very low ferritin, moderate anemia?
 
Stephanie,

Believe it or not, I think that is GREAT news. I realize that living with celiac is difficult but, at least you've got an answer. So many of us just spend years trying to figure out what went wrong, or what we are doing wrong, or if we are bleeding sporadically.

I don't know how you are feeling otherwise but from everything I've read, celiac affects so many different bodily functions that you might end up feeling like a new person when you get the diet figured out.

steph74 01-03-2008 06:04 AM

Re: Very low ferritin, moderate anemia?
 
Yes, I've thought of that--the more I read about it the more I realize that I've had diffuse symptoms that weren't ever put together (not by me or the doctors) that I attributed to "getting older" (I'm 33 and in otherwise good health!)

I'm realizing that many of these symptoms are likely caused by malabsorption problems (lack of vitamin K = easy bruising, low B12 = tingling in arms & legs, ...) I also found out I have exceptionally low cholestrol (97!) but I attributed this to my healthy diet... Now I worry that I will gain weight when I start absorbing food well again. I've often noticed that I eat the same amount of food as my friends who are overweight, and if anything, I'm underweight (or on the very low end of normal).

There is still a 5-10% chance that I don't have celiac. The blood tests were very HIGH positive, but there are false positives, so I won't know for sure until after the biopsy.

I'm not thrilled about the prospect of being gluten free, but I know there are so many worse things that it could be. I know many other people with autoimmune disorders (RA, MS, etc.) that are not treatable and progressively get worse. This at least is treatable, even if the treatment isn't easy and will make me feel like a bit of a freak.

So my new anemia question is this--if I do have celiac, and it will take ~1 year for my intestine to recover, is it pointless for me to be taking all this oral iron if I can't absorb it anyway? Should I be getting infusions or something else?

Stephanie


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