Low Ferritin (iron-deficient)

[leah1321]

Hi again.

Yeah, so my life is bad right now. I even found out that an X-Ray of my wrist after a fall was incorrect and it turns out I have a broken right wrist. It is one of the carpal bones and might need surgery Yey. That is not why I am writing now, but it gives you an idea of the place I am in right now. There is more in the unfortunate accident column, but more of that later.

I just found out that I have low ferritin. I am not sure how low, but it is low enough for the doctors to conference call, then call my mother and tell them that I need to call back ASAP. It was the doctor himself too, not a nurse. He also asked what tests I had had related to this in the past. Of course, since I never knew I had this, none. I did have some anemia and vitamin K deficiency in recent blood tests for the first time in my life, even after severe hemorrhaging a few years ago. I think the anemia started around the same time I tested positive, by blood, for celiac sprue. However, I did not have a conclusive endoscopy and they decided that I most likely did not have it (they put this at a 90% likelihood of not having it). I have been following a no-wheat but not obsessively no-gluten diet for the last seven months because we decided that it was probably just wheat sensitivity. I got better quickly and then much worse again a few months later. I was thinking could this be the cause? I do not bleed much at all (sorry guys), barely at all. I have had blood in my urine in the last year, but what else can cause this?

Does anyone else have iron-deficiency anemia? Anyone else have all these things? Has anyone tried the iron supplements? I heard they are rough on the tummy, is this true? Any ideas to help me out? I have been craving a lot of beef (even though it kills my stomach), eggs, raisins and such, so I figured I was anemic. The daily eating of high iron foods has not helped.

Thanks,

Leah

[BuddyLeesWife]

I had to take iron supplements for anemia several years ago and they are hard on your stomach. I remember telling the Dr. that I was taking a multi-vitamin with iron and he said that the supplements for treating anemia are much, much stronger. I think I took Feosol, available in the pharmacy without a prescription but recommended to be used only under a Dr's supervision. The supplements can be constipating so the Dr. suggested that I also take a stool softener (not a laxative) at the same time and it did help - so did taking them with food. Make sure your Dr. is okay with you taking this sort of iron supplement.

I can't help with your other questions as my anemia was caused by "girl stuff". I can tell you that I felt horrible and totally exhausted during the several years that I struggled with it.

[morgan617]

first you need to find out what is causing it...ie horrible cycles etc. the usual treatments are iron, B12, and folic acid. when i was very anemic, we are talking i could have had transfusions, my doctor gave me injections of iron because of my poor irritable gut. they were given in my back end. i got them once a week. the only side effect i had was getting little black circles on my rear. the shots are supposed to be given in a z track, which is a certain way you give shots that may be irritating to tissue or need to be injected fairly deeply. the iron is given z track so you don't get little black circles on your bum. i got them anyway. they were NOT painful and they DID go away. they were just funny looking, but then not too many people star gaze at my behind anyway, it spared my stomach and after just a few injections i felt so much better. my hemaglobin went from 7 (normal being 12-16 for females) to 13. iron is very hard on your gut. i could never take prenatals because of the amount of iron in them. so talk to your doctor about this. i know he will say it's not how it's usually done, but just tell him you are a unique and wonderful person who needs things done a little diffrently than the norm. good luck, oh folic acid usually does not bother the stomach, nor does oral b12, but b12 is usually given in the arm and is a very tiny shot. morgan

[briarrose]

I've had problems with anemia since the onset of tachycardia. My H & H dropped so much that they finally started me on weekly erythropoetin and IV iron. The combination has done wonders for my quality of life. I have less brain fog, more energy and endurance!

If you have any questions please feel free to email me.

steph

[Patricia]

Hi Leah,

Could you tell me what your ferritin level was? Mine was 40, low normal; normal

range 9-204. My TIBC was below normal as was my Transferrin, but I am not anemic ( normal hemoglobin and hematocrit) and I have a normal iron blood level. Confusing or what? I am not taking any supplement for it. I always wondered!

Patricia

[Gena]

Hi Leah,

I had vitamin K deficency, anemia/low iron levels for many years. My hematologist could never figure out why. Thought maybe due to heavy periods at that time. He never tested for celiac or chron's, etc. I took iron supplements for years and as soon as I tried to go off of them, the anemia would return.

A few years later I became so ill with digestive problems that my gastro doc did a blood test for celiac. It was positive. I was soooo mad at my hematologist for never checking for digestive causes. As my celiac had gotten so bad that my intestinal lining was completely wiped out. (I am now healthy in that respect due to being on a strict gluten free diet).

Regardless of your endoscopy results (we all know tests can be performed and interpreted differently by different doctors.), I would adhere to a strict gluten free diet and have your blood tested again for gliadin antibodies in about 3-6 months as well as your iron. If both tests are normal then, you know to stay gluten free. I would also find out the cause of the blood in your urine, as that may be contributing to your low iron levels. I know many people have blood in their urine due to interstitial cystitis of the bladder. It's definitely a good idea to see a urologist about the reason for the blood though.

Hope this helps.

[leah1321]

my ferritin is 6!!! Quite low. My doctors kept sending me back and forth to each other's nurses and ultimately my PCP said that he would see me. He thought it was an emergency but was not the original doctor to do the test. The rheumie did it but he thinks that this is a more general, comprehensive health problem, you get the idea. Anyway, I am going in in two weeks to see the PCP and have another series of tests. I did not realize quite how serious it was until I read up on it. I thought I was just in a very very bad attack of my POTS, but some of the symptoms are the same, from bad brain fog to tachycardia to shortness of breath, dizziness and extreme fatigue (man, am I wiped). I figured it was all related to starting a new graduate school program. I think I should probably go to the doc sooner, but I got worried about my school schedule and the exhaustion of travelling the two hours needed to see this doctor (insurance only covers Long Island where my mom lives and my school is in NYC, 60 miles west of my mom's house). I am not feeling well and am not sure what to do. I am eating a lot of high iron foods, even more than the large number I was eating before, so we will see if that helps. One good thing was that my hemoglobin was up from the 10.8ish it has been running for the past year. I think that is why they did not suggest immediate shots. My hematocrit has also improved, but it was only a tiny bit below normal anyway. My red blood cells are low though.

I think I do have celiac, but now I am wondering if I should have zero gluten and see if I get better or repeat the tests after having gluten. I feel lots better on a wheat free (not necessarily gluten free, although I do not have barley or rye, only spelt and oats really and there are questions about the gluten content of those. In Europe, many celiacs eat oats and sometimes even spelt) diet. I am so frustrated by all of this. Now I have an eye ulcer or something too. Grr.

Several members of my family had leukemia, actually the same kind, but on different sides of the family (apparently a type common in the Jewish population) and so I know about erythropoetin and I hope that can help me and I will not have to turn to iron pills. A roommate I had second year of college had two weeks of HEAVY bleeding every month and needed iron pills and they made her violently ill and so she kept quitting them and would only start again after she started fainting, they were that bad. I have had stomach erosion and have almost constant nausea as is, so I worry. My periods are extremely light, so I can't imagine they are the problem.

Whenever I think I am in a lull, it all gets worse again and usually all at once.

oh, my B12 and B6 have been low too.

Thanks all for your help. I appreciate it as I am concerned and never had to deal with this problem before. Gena and Steph- I am so happy you got better and can share your success with me!