My Iron Levels Are Very Low And Dr. Is Not Helping

[Carolita]

Hello all.

I need you advice please. I received my blood work results back on Thursday and my iron levels are very low.

% Saturation

Results 7

21-38

Iron

Results 38

50-170

TIBC

Results 555

240-450

Also my MCH, MCHC and RDW came back slightly off

Test

MCH

Results 26.7

27.0-31.0

MCHC

Results 32.6

33.0-37.0

RDW

Results 15.6

11.5-14.5

The problem is that my Dr. is not doing anything to help me. I have called the nurse several times since Thursday asking to see the doctor or to get advice as to what to do but they don't call me back. I feel miserable. I'm very dizzy, tired, hungry (even after eating), my heart rate some times increases after eating. I'm not feeling well at all.

I have started the gluten free (and derivatives) diet and I'm taking iron pills (45 mg three times a day - I decided to do this b/c I didn't know what else to do) but I'm not getting better.

Please help. Your advice is appreciated.

Thanks,

Carol

[julie5914]

How long have you been gluten free and taking the iron pills? I had low iron too when I was diagnosed. The iron pills didn't work well with me either, and that combined with the anemia was making me feel like crap. After several months gluten free though, I could move from the iron pills to just plain multi-vitamins. My iron has never been higher (and I took multi-vitamins before starting the diet). Your other blood numbers are just out of whack because of the iron. There isn't much more they can do for you than wait for you to heal up and start absorbing the iron unless you want injections. Are you on prescription iron? You should at least have a prescription for some slow release iron that you take morning and night. Make sure you are getting folic acid too.

[jerseyangel]

My experience with anemia is almost identical to Julie's. I was severly anemic, prior to diagnosis. I couldn't stand for any length of time with out feeling faint. I gave up my job during this time (this in addition to the GI stuff, etc.). My doctor had me taking iron suppliments, but they upset my stomach even more--causing me to feel even worse. Thank goodness I was finally diagnosed and began the gluten-free diet--after 6 months, my iron levels were perfectly normal--the best they have ever been to my knowledge! I take only the iron that is in a multivitamin daily. I see you have not been gluten-free for long--I think once you are gluten-free for a little while, and begin to heal and absorb your foods better, your anemia should improve. Some of the symptoms you describe are things that I experienced right after starting on the diet--the fatigue, hunger especially. Sorry you feel so sick right now I hope you begin feeling better soon!

[Carolita]

  julie5914 said:

How long have you been gluten free and taking the iron pills? I had low iron too when I was diagnosed. The iron pills didn't work well with me either, and that combined with the anemia was making me feel like crap. After several months gluten free though, I could move from the iron pills to just plain multi-vitamins. My iron has never been higher (and I took multi-vitamins before starting the diet). Your other blood numbers are just out of whack because of the iron. There isn't much more they can do for you than wait for you to heal up and start absorbing the iron unless you want injections. Are you on prescription iron? You should at least have a prescription for some slow release iron that you take morning and night. Make sure you are getting folic acid too.

Hello Julie,

Sorry you had to go through this also. Its awful but I'm glad you are doing better ... it gives me hope.

Well, I'm not on any prescription iron b/c my dear Dr. has not called me back since Thursday (I actually think the nurse is not giving her the messages) and well my husband bought me Feosol and I've been taking it for 3 days. I've been on the gluten free diet for about the same time. I'm very new here and to celiac disease. The iron pills I'm taking are supposed to be a pure form of iron and it says on the bottle that they are an Iron Supplement Therapy. They are 45 mg each, which says here is 250% of the recommended dosage. I'm taking it three times a day. I hope I'm not over doing it but my iron levels sure look very low to me (I'm no expert though). I have even thought going to the ER but what can they do there? They probably will just tell me to call my Dr. This is so frustrating. I'm not feeling well at all. I guess injections would not be bad but I can't get in touch with the Dr. How low was your iron?

Thanks so much for replying.

Carol

[penguin]

I was about as anemic as you are when I had mono a few years ago, and the Dr. just put me on Feosol, what you're on now. I never took them long because they made my stomach even worse. I've been on and off anemic since then, but I try to get lots of iron in my diet. Red meat, leafy veggies, etc.

Oh, and eat your steaks with OJ, because vitamin C helps the iron absorb. Drinking lots of OJ will help with your iron levels in general, actually.

Your iron should come back up naturally with time, as you heal, and as you absorb more. Don't worry, just don't try to give blood anytime soon (They'll laugh at you when they test your blood when they do the finger stick)

[Carolita]

Hello Patti.

Thanks for the reply. I'm feeling so bad I feel like crying. I'm sorry you had to go through this as well. I turned in my resignation at work today. I had already planned doing this before I got sick but now it will help me rest for a few weeks before I start school. Hopefully I feel better by then. Do you remember what your iron levels were at when you had anemia. I'm so afraid mine are too low and I need immediate treatment (iron shots) though I'm taking a lot of iron right now. I just hope my body is absorving some of it. I was some what gluten free for a year before going on the full diet b/c I was also diagnosed with Candida Albican and I had to follow a yeast free / low carb diet. Thanks for replying. It gives me hope that I will get well.

Carol

[Carolita]

Hello Chelsea.

Thanks for reading me and replying. You too had to go through this ... I'm sorry, its awfaul and I don't wish it on any one. Believe me, I'm keeping my blood ... I need all of it right now

So you were as bad as me? I'm glad you are doing better. The Feosol has not made me feel sick as far as I can tell ... I was already feeling this miserable before it, hahahahahahahahaha So I guess I'll just keep taking it. I hope I'm not taking too much of it. I don't want to over dose myself with it. I have already left two messages for the Dr. today and still no phone call. She could at least call back to let me know what to take and how much.

I've been trying to eat foods with iron and I'm taking a C vitamin pill as well. I get sick with eating the meat though. It just started happening recently (about 3 months ago) ... I don't know why but I feel like it is too heavy on my stomach so I've been eating chicken and shrimp. Also black beans and eggs.

Thanks so much for the reply. It helps me a lot to know I'm not alone.

Carol

________________________________________

I forgot to mention that I'm also taking Folic Acid, B12 (sublingual), Calcium and Magnesium.

[penguin]

I think I only took one daily of the Feosol, or whatever it said on the box. It takes some time for those iron levels to come back up, so you can't really rush it.

Anything dark and green (except spinach and a couple others) has a good amount of iron in it, but it really needs the vitamin C to help it because veggie iron isn't absorbed as readily. Turkey and shrimp have a decent amount, beans and blackstrap molasses are good, too. Caffene and soy will inhibit iron absorption.

You're doing all you can do, just keep doing it! (and don't over do it)

[Carolita]

Thank you Chelsea!! I hope I feel better soon. The funny thing is that when they drew the blood I wasn't feeling as miserable as now. I was feeling some what OK so my iron levels have probably dropped since then. Hopefully they will be going back up with what I'm doing. There are certain foods I can't eat (such as molases) b/c of my Candida so I'm limited on that but I will go home in a few minutes and bake me some meatloaf. It seems to settle better in my stomach than steak. I'll make a spinach salad on the side. I just need the strength to get home b/c I'm very tired right now ... it is almost scary.

Thanks again,

Carol

By the way .... muy urine has started to turn a little bit greenish ....

Did that happen to you when taking the iron pills?

[Guest MyKidsMom]

I, too, had little success with iron pills and anemia...but I found a great naturapathic doc and she said that I can't absorb regular iron pills. Something about the difference between heme and non-heme iron (non-heme iron can have as little as 2% absorbability). She gave me a new brand to try and it is great! For the first time in months I don't feel drugged when I wake up in the morning.

"Energizing Iron" by PhytoPharmica Natural Medicines

Division of Integrative Therapeutics, Inc, Green Bay, WI 54311

Oh, and it says there should be no uncomfortable gastric side effects (and I haven't had none) and, of course, it is gluten-free! I take six tablets a day.

-Dianna

[ravenwoodglass]

  Carolita said:

Hello Chelsea.

Thanks for reading me and replying. You too had to go through this ... I'm sorry, its awfaul and I don't wish it on any one. Believe me, I'm keeping my blood ... I need all of it right now

So you were as bad as me? I'm glad you are doing better. The Feosol has not made me feel sick as far as I can tell ... I was already feeling this miserable before it, hahahahahahahahaha So I guess I'll just keep taking it. I hope I'm not taking too much of it. I don't want to over dose myself with it. I have already left two messages for the Dr. today and still no phone call. She could at least call back to let me know what to take and how much.

I've been trying to eat foods with iron and I'm taking a C vitamin pill as well. I get sick with eating the meat though. It just started happening recently (about 3 months ago) ... I don't know why but I feel like it is too heavy on my stomach so I've been eating chicken and shrimp. Also black beans and eggs.

Thanks so much for the reply. It helps me a lot to know I'm not alone.

Carol

________________________________________

I forgot to mention that I'm also taking Folic Acid, B12 (sublingual), Calcium and Magnesium.

Hi Carol, I am glad to see you are taking the sublingual B 12 as well as the rest. Please make sure everuthing is gluten free and please just take the reccommended amont of the iron. Your stores will build back up but too much iron in a supplement can be dangerous. Also if you are newly gluten-free you will most likely be on an emotional rollercoaster for just a little while while the gluten clears your system. Try not to stress to much, keep eating gluten-free. Also if you really feel this nurse is not getting your messages to the doctor let the doctor know when you see her. Maybe keep a record of your calls to show the doctor. I hope you feel better soon.

[Ursa Major]

I was severely anemic a few years ago. Many days I was so weak that I was unable to get up, my legs would just buckle under me, and that was that.

I took high doses of iron then, which made me so sick to my stomach that I was just in agony, and unable to stand up straight! I got iron shots, and they made an immediate difference (even though I needed two a week, and they tested my ferretin twice a week, too, because it wouldn't stay up, I looked like a junkie, my veins were a mess, and I couldn't sit, because those iron shots make your butt hurt).

In Germany they will give iron intravenously when it is so low, and immediately you feel better (for the time being). You might want to suggest that. And really, if your doctor won't call you back, you should go to the hospital. Because iron levels that low ARE an emergency! Your heart could give out without enough oxygen, or you could pass out.

Since your small intestine is damaged right now, and won't absorb things, iron supplements taken by mouth are almost useless. Injections or an IV are the only viable options that won't make your bowels worse.

The biggest reason my iron got so low was, that my menstrual cycle was totally out of whack - my period was two weeks long, with bleeding so heavy, it was close to hemorrhaging, with only a week in between! No doctor clued in that celiac disease was the cause. So, I had a hysterectomy, which was okay, since I was past childbearing age anyway, and my iron went up. But that was the wrong fix, as it didn't fix the real cause. The gluten free diet would have actually fixed ALL my problems eventually, and the injections would have kept my iron up, while my bowels would kick in as they started healing, and absorbing nutrients again. Oh well.

I hope you'll figure it out. You can't just leave it, it's not safe. Shame on your doctor! Mine called me at home as soon as she got the results of my test, and was very alarmed. And when my stomach rejected those iron pills, she immediately prescribed the injections. Unfortunately, she had the outdated notion that all celiacs LOSE weight, and since I was gaining, it never occured to her. But at least she cared. She is still my doctor, because I like her, she is a sweet woman and willing to learn. I don't blame her for not diagnosing me earlier, because she was misinformed, like so many doctors. She knows better now, I made sure of that.

[julie5914]

I had different labs than you did. When they tested I had a hemoglobin of 10 (should be 12-13) and a hemotocrit of 30 (min is 37). I felt worse after that before getting better. It took several months to get the blood levels up on prescription iron pills. I took them before bed so I could sleep through most of the discomfort. After about 4 months gluten free, it really shot up into well within the normal range and I had the first normal CBC (complete blood count) of my life. I can even give blood without a hitch now. I don't know how bad your numbers are there because I'm not familiar with that range.

I'm sure the anemia is partly responsible for making you feel bad, but probably a large part is the celiac since you have only been gluten-free for a few days. It took me about 6 months + finally giving up milk to start really feeling better. For the first 3-5 months there I was desparate to start feeling better, but it just takes time. Now most days I don't even really think about it. It'll be a year gluten free in June. I still get tired sometimes cause that's the way celiac is, but it's not too bad. I had a lot of trouble digesting protein as well. My doc finally prescribed an enzyme called Creon that helped some.

The doc not calling back since Thursday is not surprising. Usually takes them 2 weeks to do anything. Good news is that means your numbers are probably not dangerously low. You can make another appt to discuss your labwork and talk about prescription or injections - might the best way to talk to her.

[jenvan]

  Carolita said:

Hello all.

I need you advice please. I received my blood work results back on Thursday and my iron levels are very low.

% Saturation

Results 7

21-38

Iron

Results 38

50-170

TIBC

Results 555

240-450

Also my MCH, MCHC and RDW came back slightly off

Test

MCH

Results 26.7

27.0-31.0

MCHC

Results 32.6

33.0-37.0

RDW

Results 15.6

11.5-14.5

The problem is that my Dr. is not doing anything to help me. I have called the nurse several times since Thursday asking to see the doctor or to get advice as to what to do but they don't call me back. I feel miserable. I'm very dizzy, tired, hungry (even after eating), my heart rate some times increases after eating. I'm not feeling well at all.

I have started the gluten free (and derivatives) diet and I'm taking iron pills (45 mg three times a day - I decided to do this b/c I didn't know what else to do) but I'm not getting better.

Please help. Your advice is appreciated.

Thanks,

Carol

Carol-

Hello! Unfortunately iron supplements do little to help those with serious anemia recover. I took supplements for nearly a year--literally. After my GP continued to throw iron pills at me, I insisted I be referred to a hematologist. By then I some of the lowest numbers she had ever seen. I had an iron infusion which was a great treatment...I have been in the normal ranges for a year now. I still get iron ck-ups ever 3 mos...unfortunately my numbers are dropping...so I may have to have the treatment again, but it is far superior to supplements (and iron-rich diet) to those with severe or persisting anemia. Dizziness and fatigue are definitely possible anemia signs. Some individuals also develop temporary heart murmurs until their anemia is corrected. I had this also.

Please take things into your own hands if your doctor will not respond. Get a referral to a hematologist (or another doc) who will treat you. My hematologist was excellent and was actually the one who decided to test me for Celiac.

[mtdewpeg]

My bloodtests showed i was very irondeficient. My GP didn't know why, but did set me up for ferrintin infusions. i went 3 days in a row. It made me feel alot better. Within a couple weeks I saw a GI and had a biopsy, which confirmed the celiac diagnosis. They did more blood tests. I am still a little anemic, but much better. they will recheck in 3 months unless I get feeling weak, dizzy sooner. the dr said it should start increasing. I feel reaLLy good right now and not weak at all. the infusions really help fast.