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Sue C

Iron Deficiency

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As most of you have, I have suffered for years with a variety of medical problems (constipation, gastric reflux, hypothyroid, insomnia, etc). Over a year ago after a routine blood test it was discovered that I was anemic. A co-worker suggested I might have celiac disease. I made the mistake of going on the gluten-free diet before they tested me so I tested negative. They checked my gastric system from one end to the other thinking I was bleeding internally and found nothing. I was placed on vitamin B12 and nothing done again until a year later I had the same routine blood test and the anemia had worsened (by the way I had gone back on the gluten about 8 months prior to the 2nd blood test). My GI doctor redid the biopsy and I tested positive for celiac disease.

I have been gluten free since Feb 09. They retested my blood in June and advised that I am still borderline anemic and that my iron stores are very low. My doctor wanted me to have IV Iron. I talked her into giving me another 3 months to try to get my iron levels up. I am trying hard now to do so. Because of the constipation it has been difficult for me to take iron. Recently my doctor suggested I try Phillips Milk of Magnesium tablets for the constipation and so far it is working. Now I am able to take one iron tablet a day and am hoping to increase it to 2 tablets daily.

As anyone gone through this with their iron? Has anyone had to have the iron IV's? That kinda worries me. I don't know what to expect.

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I really hope it's okay to suggest this......My doctor just put me on MiraLAX. It seems to be helping the constipation. Check with someone else to be sure it's okay.

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I used some stuff called SlowFE. I don't get constipated with any kind of iron so I can't tell you if it would have made a difference, but is supposed to be well absorbed and non-constipating.

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there are a couple of things you can do to help your body absorb iron:

1) take your iron at least two hours before or after taking calcium (and definitely not with antacids), or consume legumes, including soy, or most grains (anything with phytic acid) or coffee/tea (polyphenols)

2) take your iron with something acid - vitamin C works great

(so, basically, I'd take iron on an empty stomach with some vitamin C, two hours before or after meals/other vitamins)

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I am taking a iron product called Ferrasorb, recommended by a gluten free doctor. I was afraid it would mess up my stomach, but it hasn't. My neuro has suggested ferritin IV's which I would imagine is the same thing as iron IV's, I can't find any info on one without the other. My iron itself is very low normal, but my ferritin is 2 points from anemic.

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Thanks for the responses. I have tried Miralax and I think just about every kind of stool softner but nothing seemed to help until the Phillips. Using it the constipation is much better. I just feel like I am running short on time since they are going to redo my blood work in Sept. I am hoping my iron levels will be up enough. There are some days when I am so tired that I think I should just go ahead and have the iron IV but I really don't want it. But like it has been said before on this site "I am tired of being tired". Friends and relatives keep asking me if I am feeling better on the gluten-free diet, but I don't because of the fatigue from the iron issue. It is so frustrating.

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"I am tired of being tired". Friends and relatives keep asking me if I am feeling better on the gluten-free diet, but I don't because of the fatigue from the iron issue. It is so frustrating.

I hear you and feel your frustration. I have been gluten free for 9 years, and for the last 4 years, my doctors have been telling me I am doing fine. One tells me I am so healthy I will live another 50 years. My response, "Feeling like this! :( " I didn't have money, nor insurance until 4 years ago, well, I still don't have money! :P Since then though, every time they do blood work, I am told everything is within the normal ranges. With much research, I now realize, "normal ranges" do not mean squat.

I started taking B12 on my own 5 years ago, and finally, my neuropathy is showing improvements, slight, but still good. Now my neuro says, "Stay with the prescribed B12." So, now he wants recognition for my research and persistance. Finally, last year, he did a very extensive blood work on me, and most of my levels are within normal ranges, but very low in the range. Last June, my ferritin was 26, with 20 being anemic, yet he told me everything looked good. My Vit D was 26, and he still said I was doing very well. He diagnosed me with sleep apnea, I had the sleep study, and yup, I have apnea, with low oxygen levels. No one is addressing that, I just want to know what to do to increase it. After 10 months on a CPAP, I am still exhausted, still having headaches all the time, still feeling like crap. So in June this year, he did my ferritin levels again, and they dropped 4 points, so now, he wants to do ferritin IV's. When I asked why we couldn't try iron tablets, he said because they work too slowly. What's his hurry, he didn't worry about it for 1 yr?

I just realized dairy was giving me problems, and am using coconut milk...finally, I have been sleeping all night, one night 7 hours, which is a record for me. 5 is usually my limit. But, you guessed it, I am still so tired, yawning all the time, wanting a nap by noon. I think it's the iron.

I have an appt with my PCP in late August, and will have blood work done again. We will go from there.

Good luck.

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I went through all that. I fought the iv iron for a long time. I took enough iron to build a locomotive but it never came up over over a four year period. I finally gave in because all that iron caused gastritis so bad that I was waking up retching every night. I'm going for my second round in couple of weeks. My serum went for 4 to 44 still low but much improved.

Why are you resisting the iv iron? Maybe I can answer some concerns for you. There is some suggestion that there are autoimmune issues that cause the iron anemia. Which may mean I'll always need help even though I'm gluten-free for a while now. I'm still trying to figure it all out.

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Have you tried different types of iron. Most common is ferrous sulfate. I have major issues with ferrous sulfate, but have been able to tolerate ferrous gluconate much better. I don't know if I'm absorbing it...re-tests are in a few weeks. However it might be worth researching and considering alternative forms of iron before you try the infusions.

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Why are you resisting the iv iron? Maybe I can answer some concerns for you.

Not sure who you are asking, but I can answer for me. I am not sure that I am resisting it entirely. My neuro said, "Maybe we should do ferritin IV's." Then he moved on to something else, like it was just a thought and nothing more. He increased my Wellbutrin, told me to set up an appt with another neuro in the same office who does botox, to see his PA in 3 months just to check on how I am doing with the Wellbutrin, then him in 6 months because my neuropathy had improved a little. I think it was totally out of his mind. I am seeing my PCP the end of August, and will discuss it with him.

My only other concern is: What effect does an ferritin/iron IV have on you? When you are given so much at one time, could it shock my body? It's so tempermental already.

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Hi everyone. I have been battling severe iron deficiency anemia for the past few years and after trying every form of iron supplementation other than IV, I finally did it just this past month. My labs were not low-normal, or low, or very low. They were at the alert levels. I was at the point where I literally had to drag myself out of bed and then all i wanted to do was crawl back in it. I couldn't tolerate oral iron at all. The experience itself was not incredibly traumatic, but I was concerned about having an allergic reaction. The night of the infusion when I came home I went through having some palpitations and feeling flushed, which lasted through the next day. After that it passed, but so far I have not regained much if any energy. I am having my levels tested next week to see if I was able to hold onto the iron or not.

I was just diagnosed with celiac disease this week after having the biopsy on the 6th. I had been having extreme nausea for 2 months and multiple other health issues for years (many of which are related to celiac disease, some not). I am hoping I do not have to continue to do IV iron therapy for a long time, but I am concerned that having celiac disease might affect that. Still learning about the gluten-free diet and all it entails. That is quite a daunting task. Nice to meet everyone.

Christina

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I hear you and feel your frustration. I have been gluten free for 9 years, and for the last 4 years, my doctors have been telling me I am doing fine. One tells me I am so healthy I will live another 50 years. My response, "Feeling like this! :( " I didn't have money, nor insurance until 4 years ago, well, I still don't have money! :P Since then though, every time they do blood work, I am told everything is within the normal ranges. With much research, I now realize, "normal ranges" do not mean squat.

I started taking B12 on my own 5 years ago, and finally, my neuropathy is showing improvements, slight, but still good. Now my neuro says, "Stay with the prescribed B12." So, now he wants recognition for my research and persistance. Finally, last year, he did a very extensive blood work on me, and most of my levels are within normal ranges, but very low in the range. Last June, my ferritin was 26, with 20 being anemic, yet he told me everything looked good. My Vit D was 26, and he still said I was doing very well. He diagnosed me with sleep apnea, I had the sleep study, and yup, I have apnea, with low oxygen levels. No one is addressing that, I just want to know what to do to increase it. After 10 months on a CPAP, I am still exhausted, still having headaches all the time, still feeling like crap. So in June this year, he did my ferritin levels again, and they dropped 4 points, so now, he wants to do ferritin IV's. When I asked why we couldn't try iron tablets, he said because they work too slowly. What's his hurry, he didn't worry about it for 1 yr?

I just realized dairy was giving me problems, and am using coconut milk...finally, I have been sleeping all night, one night 7 hours, which is a record for me. 5 is usually my limit. But, you guessed it, I am still so tired, yawning all the time, wanting a nap by noon. I think it's the iron.

I have an appt with my PCP in late August, and will have blood work done again. We will go from there.

Good luck.

Look at the GAPS diet. http://www.gapsdiet.com After being on this for 6 weeks I'm starting to finally see some of my fatigue and exhaustion begin to subside as well as some of the other symptoms of various deficiencies. I realized that the fundamental problem was continuing malabsorbtion of various things due to long term damage to the bacterial system of my entire digestive tract. A friend of ours put me onto this and I has really helped her family as well.

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Welcome to the forum rockchick :)

When my daughter was born she had low iron levels, we had to put iron drops in her formula. Fast forward she was diagnoised with Celiac Disease at age 10, she has been gluten free for almost 3 years. She still has low iron levels. Did some research on her fathers blood line he is half Italian. Found out he has thalasemia (sp) so now have a understanding that some blood lines cannot absorb iron. FYI

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Not sure who you are asking, but I can answer for me. I am not sure that I am resisting it entirely. My neuro said, "Maybe we should do ferritin IV's." Then he moved on to something else, like it was just a thought and nothing more. He increased my Wellbutrin, told me to set up an appt with another neuro in the same office who does botox, to see his PA in 3 months just to check on how I am doing with the Wellbutrin, then him in 6 months because my neuropathy had improved a little. I think it was totally out of his mind. I am seeing my PCP the end of August, and will discuss it with him.

My only other concern is: What effect does an ferritin/iron IV have on you? When you are given so much at one time, could it shock my body? It's so tempermental already.

My friend, a cancer nurse, suggested it for a couple of years. I didn't want to do it because of the risk of allergic reaction. I got scoped and did a barium swallow because of the horrible retching and anemia. They took my gallbladder and it still continued. I was down in the single digits despite taking lots of types of iron. I finally just got fed up with being sick and tired (sound familiar?) :P My hematologist is good and said after four years and that low of levels it would be very difficult to recover. I did react to the first drug. My head started itching. The nurses stopped it immediately and I had Benadryl and that was it. The second type is slower to infuse and I have to take Benadryl about an hour before. I don't feel good afterwards. It makes me very sleepy and groggy. I don't know if it's the iron or the benadryl but about 30 minutes into the infusion, I fall asleep. I can't help it. I go home and sleep usually four or five hours. I'm still low, but I can tell a difference. My nails are pink, I don't get winded and I don't shake my leg so much. She is shooting for mid-range because I have heavy cycles and I have been depleted for such a long, long time. It stinks because it has to be every week for a cycle of eight weeks. It takes a half a day with the sleeping and all. I don't really have time to do it but, eh, what can I do? It is working and everything else will have to revolve around that for eight weeks.

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Korwyn..Look at the GAPS diet. http://www.gapsdiet.com

The foods I still eat are on this list. Many of the things, I can't eat anymore. I did just add coconut milk to my diet, and no longer eat dairy.

Trillumhunter..My nails are pink, I don't get winded and I don't shake my leg so much. She is shooting for mid-range because I have heavy cycles and I have been depleted for such a long, long time.

My nails are pink too---oh wait, that's nail polish! ;) Kidding aside, "I don't get winded" jumped out at me. Yesterday, I went for a walk after supper, which I have been trying to do nearly every day, and when I got back, I sat down on the couch, and realized I was very winded, working quite hard for each breath. I had a very nasty headache yesterday afternoon, which had me dizzy before it hit. I didn't realize the dizzy was connected until after the headache let up, and the dizziness hit again. So, when I was winded from the walk, I just kind of connected it to the rest of the day, which may still stand true. By the way, what does shaking your leg have to do with anything? Is that a symptom?

My neuro said, "A couple of ferritin IV's", no mention of weeks of them. :o Before going gluten free, my sister was on iron IV's, once a week for 4 hours, and was told she probably would have to do them once a month for the rest of her life. Then she went gluten free, and never had the IV's again. She does have to watch her iron levels closely, they will drop without constant diligence, but has never had to have the IV's again, that was 9 years ago.

I had very heavy cycles too, but I have been in menopause, with cycles stopping at 49, I am now getting close to 54, so the cycles are no longer an issue.

More tho think about, thanks.

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Please consider Floradix, you will want to get the version called FloraVital. FloraVital is an herbal iron supplement/blood builder. FloraVital is gluten free and non-constipating. It comes in liquid and is sold in most health food stores or online. Just be sure and get the right version because the bottles look very similar and are right next to each other on shelves.

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Thank you.

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I am taking a iron product called Ferrasorb, recommended by a gluten free doctor. I was afraid it would mess up my stomach, but it hasn't. My neuro has suggested ferritin IV's which I would imagine is the same thing as iron IV's, I can't find any info on one without the other. My iron itself is very low normal, but my ferritin is 2 points from anemic.

Hey Deb,

I cannot recall if I told you..but a wonderful hematologist ordered Venopher IV iron infusions for me last year (In Tampa) when my ferritin was low.

Hope this helps,

Sylviaann :)

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I cannot recall if I told you..but a wonderful hematologist ordered Venopher IV iron infusions for me last year (In Tampa) when my ferritin was low.

ANy reactions too it. I wonder what it does to a body to get it like that. Oh, and how long did it take for you to start feeling better.

I finally am sleeping through the night, yet, am still exhausted all day long. I wonder if it has anything to do with the low ferritin.

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Some of you should feel fortunate to have doctors that will address/treat your low ferritin. Mine has been chronically low (was 4 and has never gotten above 6) since spring of '07 (if not longer that's when I actually got tested). I have tried oral iron otc and rx and it gives me wicked heartburn. I have not supplemented since then. I feel that I am a good canidate for iron infusions, but don't know where to turn. The nurse practictioner at the GI doc's office blew it off saying that without low hemoglobin and hematocrit (anemia) I should not have any problems/symptoms from the low ferritin by itself. I tend to disagree. I feel my tachycardia and extreme shortness of breath when I try to exercise is related. I am also starting to have my hair fall out again. (I don't think it is thyroid related) I am going to have the ferritin checked again soon to see if it has improved since Dec. I can't think though with levels that low my diet alone can bring it up. I am going to bring up the iron infusion at my next appt.

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You may want to try another doctor - another specialty. It was my rheumatologist who checked my iron levels and had me start supplementing (ferritin being within the normal range, but right on the low end) due to a *possible* contribution to restless leg. (Not suggesting a rheumie is the way to go; I see her for fibromyalgia, just that other docs may be better up to speed on the effects of low-normal iron.)

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For those that had iron infusions, I'm curious what your target ferritin levels are/were? I have done some reading that it should be greater than 70 and some sources even stated 100. I talked it over briefly with my GI and said it could be an option for me. I had my iron checked today and here are the results: serum iron 45 mcg/dl (range 60-150), iron saturation 10% (range 20-55), iron binding capacity (TIBC) 431 mcg/dl (range 250-400), ferritin 10.4 ng/ml (range 11-307). The ferritin has increased slightly since Dec. 08 (was 6) but that labs range for low was I think 20, but I could be wrong. I also have been thinking about vitamin b 12 supplements and mentioned it to the GI. I had a vit b12 of 427 pg/ml (range 180-914) and folic acid of 7.8 (range 3-20). I found some info on the b12 that it should not be lower than 500, so I'm not to far off there, but can't find anything out about folic acid. Does anyone think it is worth supplementing the the b12 and folic acid? The Gi has not notified me of these results yet (I peaked at work) and said after I got my blood drawn I could start on the b12 and folic acid. He said pill form is pretty well tolerated. Any input would be great! :)

P.S. Here are a few links I found:

http://www.sydpath.stvincents.com.au/tests...nDeficiency.htm

http://www.thewayup.com/newsletters/081504.htm

http://boards.fool.com/Message.asp?mid=249...p;sort=username

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I had a vit b12 of 427 pg/ml (range 180-914) and folic acid of 7.8 (range 3-20). I found some info on the b12 that it should not be lower than 500

Thing is, some of us can't handle a level that low. I would be in misery with that level. My level is 1016, down from 1237, and I take 5000mcg daily of B12. My neuro told me to keep taking this dose, my neuropathy is finally showing some slight improvement.

The higher the TIBC level, the worse you will feel. It should be no higher than mid range of the normal range. My iron is 61, my TIBC is now 350, up from 342 last June, and my ferritin is 22, down 4 points from last June. I was told a level of 20 is anemia. My saturation level is 18. I am having thses levels all checked the end of this month. How about your Vit D level, how is that? Mine was 20, I have been taking Vit D for probably a year now, hope it's up too.

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Thing is, some of us can't handle a level that low. I would be in misery with that level. My level is 1016, down from 1237, and I take 5000mcg daily of B12. My neuro told me to keep taking this dose, my neuropathy is finally showing some slight improvement.

The higher the TIBC level, the worse you will feel. It should be no higher than mid range of the normal range. My iron is 61, my TIBC is now 350, up from 342 last June, and my ferritin is 22, down 4 points from last June. I was told a level of 20 is anemia. My saturation level is 18. I am having thses levels all checked the end of this month. How about your Vit D level, how is that? Mine was 20, I have been taking Vit D for probably a year now, hope it's up too.

That helps on making a decision on the vitamin b12 and folic aicid. My vitamin D is doing better. Was 17 in Dec. Been taking prescription vit D since Jan and it was in the 40's in April. I'm still taking that. I can't remember target level is but I know it is highter than that. I'm going to my pcp on friday for the first time since Dec. 06 to follow up and will ask to recheck vit d. I also think I need another cbc and cmp. I also want another lipid profile done now that I'm gluten free. Last one I had was about 5 years a go and my HDL needed to go up a bit and my LDL and total cholesterol were both good. I had abnormally low triglicerides (which I later found out could be an indication of malabsorption), so I'm curious.

Have you had the iron infusion? I hope that when the GI refers me that the hematologist (I'm guessing) will not blow me off. I'm not really looking forward to it, but you get to a point that your sick of feeling so crapy that enough is enough. I have gained weight from the lack of exercise, but even the simplest exercise can set me off. It's rather depressing when you want to do things with your kids. Also, does anyone know how the infusion would affect thyroid medication absorption? The last thing I need is to get hypo again and gain more weight.

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My neuro has mentioned doing infusions, but hasn't said anything more about it.

My cholesterol was a little high, but had come down the last time tested, was 200.

I want my Vit D, ferritin, cholesterol, and glucose level checked.

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