Iron deficiency anemia and supplements not helping

[chemgirl]

I'm so frustrated with this and need to vent.

I've been the weaker kid in the class my whole life. In September I was diagnosed with iron deficiency anemia and I thought "ok good, an easy fix". My husband is a vegetarian and my mom was always pushing milk on me as a child so I thought I just wasn't getting enough iron.

Well 6 months of iron pills, a colonoscopy, gastroscopy, CT scan, kidney function test, ultrasounds, and countless blood tests later and still no closer to figuring this out.

I did get a positive result for h pylori, but it has been eradicated since November.

Had a biopsy for celiac and did a blood test for that today to double check. Was thinking of the "scared of needles" thread while the phlobotomist was digging away for my tiny veins.

Then felt dizzy all afternoon at work.

Just tired of being tired!

Anybody else have a similar experience?

 

[Kelinas]

Did they tell youwhat your iron was at?
I had a iron deficiency anemia as a child, blamed on the fact that my mother was Buddhist ( and our meals reflected that)
My iron was at 4.2, and they suggested a transfusion to raise it quickly. My parents declined kindly and switched my diet to include TONS of iron. (They also put me on Flintstones iron supplements, but left the bottle out...and I overdosed on iron, but this was WAAAY later...smh the things a 6 year old will do for "grape candy")

TL;DR-
My iron levels took almost a year to get back up to normal. I've read that 6 months really isn't enough time since your body can only absorb X amount everyday.
Maybe give it some more time or look into getting a transfusion?

Edited to include : I'm not sure what a healthy iron level is, but I know that in order for me to donate blood, it needs to be at 12.5. My levels are now typically at 13.7

 

[Gypsy]

Hmm. I made them give me IV Iron when I was in the hospital for transfusions due to anemia because I was fed up. That seemed to help MUCH MUCH MORE than anything else.

Have you tried that? I don't have any other advice to offer though. I'm just so sorry you are going through this. ((HUGS))

 

[chemgirl]

Did they tell youwhat your iron was at?
I had a iron deficiency anemia as a child, blamed on the fact that my mother was Buddhist ( and our meals reflected that)
My iron was at 4.2, and they suggested a transfusion to raise it quickly. My parents declined kindly and switched my diet to include TONS of iron. (They also put me on Flintstones iron supplements, but left the bottle out...and I overdosed on iron, but this was WAAAY later...smh the things a 6 year old will do for "grape candy")

TL;DR-
My iron levels took almost a year to get back up to normal. I've read that 6 months really isn't enough time since your body can only absorb X amount everyday.
Maybe give it some more time or look into getting a transfusion?

Edited to include : I'm not sure what a healthy iron level is, but I know that in order for me to donate blood, it needs to be at 12.5. My levels are now typically at 13.7

Ferritin was originally undetectable. Last test the nurse said it was "marginally better" so I guess that means there's a reading now.

I do realize that it takes a while for iron stores to go up, but my hemoglobin has stayed fairly constant around 100 and microcytic. That should have improved by now.

I think part of the frustration stems from my switching doctors halfway through this process. I moved roughly two years ago and have been on a waiting list to transfer to a local doctor for about a year. I was driving the 1 hour to see my old doctor until I could switch.

I like my new doctor, but I really really dislike his nurse. I saw the doctor for my original consult, but everything else has gone through the nurse. For example, my GI specialist told me to take Faramax 150, which is a high dose iron supplement designed for people with GI distress. Shortly after switching doctors the nurse called to tell me my iron was low on my latest test and I should take ferrous gluconate (the standard first iron they suggest). I explained to her that I had been on Feramax for 4 months already and she said she'd never heard of it, I shouldn't be taking it, and I need to take the ferrous gluconate (less effective pill) for 1 month and then get tested again. Test results also went to my old doctor's office and they said I should be seen right away. I called new doctor's office back and the nurse said we'd talk again in one month.

One month passes and results are "marginally better." She doesn't have the results in front of her and can't give me numbers. Tells me to take 3 ferrous gluconate per day and get tested again in 6 weeks. I tell her that my GI specifically told me not to take ferrous gluconate and I am now taking proferrin. She makes a comment about how the doctor knows about these things and wants me on ferrous gluconate. I ask to make an appointment and she says wait 6 weeks.

My old doctor has given me a list of things to tell new doctor during appointment and has highlighted specific tests results from specific days. Now I just need to actually get in to see him.

Saw the GI specialist yesterday and she is awesome. She ordered the gluten test and a small bowel x-ray.

Hoping its the gluten.

 

[chemgirl]

Hmm. I made them give me IV Iron when I was in the hospital for transfusions due to anemia because I was fed up. That seemed to help MUCH MUCH MORE than anything else.

Have you tried that? I don't have any other advice to offer though. I'm just so sorry you are going through this. ((HUGS))

I have mentioned it, but was told I needed to be referred by a hematologist, and when I asked to see a hematologist I was told that they wanted to take the wait and see approach first.

Why I feel really helpless with this.

ETA: If you don't mind my asking, did you ever find out why you were that anemic?

 

[chemgirl]

Realized that it has been 4 months of iron supplements and not 6, but surely there would be improvement by now?

 

[Gypsy]

Hmm. I made them give me IV Iron when I was in the hospital for transfusions due to anemia because I was fed up. That seemed to help MUCH MUCH MORE than anything else.

Have you tried that? I don't have any other advice to offer though. I'm just so sorry you are going through this. ((HUGS))

I have mentioned it, but was told I needed to be referred by a hematologist, and when I asked to see a hematologist I was told that they wanted to take the wait and see approach first.

Why I feel really helpless with this.

ETA: If you don't mind my asking, did you ever find out why you were that anemic?

I got the same run around. But ended up the hospital for the transfusions (2 units) anyway and just FORCED them to give it to me since they already had the IV in and everything. I just didn't take no for an answer. Every time someone came in the room I said, Is that the IV iron? When they said it wasn't I said, "please go check on that, I will not leave the hospital without getting it."

I would advise you to do the same. Call the hematologist say that you've waited and seen. If they still say no, call another. You'll find someone to do it. It's just flat out ridiculous. Don't let them put you off any longer. FOUR MONTHS is more than enough for wait and see. You've done it. Now you want the IV. That's IT.

As for the reason why? I knew why. I was bleeding non-stop vaginally for two years straight. Actually more accurately I was hemorrhaging for 2 years straight. No one could tell me WHY I was bleeding though.

I apparently had incompetent people doing my ultrasounds. That included 2 gynecologists. And one professional lab person.

SOMEHOW over a 2 year period. And through FIVE Ultrasounds. EVERYONE missed the fact that I had a 3 cm polyp in my uterus. Dead center. Which is what caused my 2 years of non-stop bleeding hell.

I finally went to at THIRD gynecologist. This one was a specialist in bleeding problems. Not babies. And he did ANOTHER ultrasound "just for kicks" and found it. Said it was "impossible to miss unless you are blind."

So... had that puppy taken out. Bleeding stopped. Anemia went away. But the IV Iron was what stopped me from having to get more transfusions. I just would NOT take no for an answer on that.

Sometimes you HAVE to be a take no prisoners advocate for your own health and push an issue till they sick and tired and just GIVE IN.

 

[lyra]

I had to go from prescription iron supplements (can't recall name!), to iron injections. That seemed to turn the tide for me. I got them every 2 weeks for several months. The GI distress was less for me than with the pills. It worked, although now I have a magnesium deficit. I feel I'm trading one thing for another. I'd ask about injections or an IV.

 

[chemgirl]

Hmm. I made them give me IV Iron when I was in the hospital for transfusions due to anemia because I was fed up. That seemed to help MUCH MUCH MORE than anything else.

Have you tried that? I don't have any other advice to offer though. I'm just so sorry you are going through this. ((HUGS))

I have mentioned it, but was told I needed to be referred by a hematologist, and when I asked to see a hematologist I was told that they wanted to take the wait and see approach first.

Why I feel really helpless with this.

ETA: If you don't mind my asking, did you ever find out why you were that anemic?

I got the same run around. But ended up the hospital for the transfusions (2 units) anyway and just FORCED them to give it to me since they already had the IV in and everything. I just didn't take no for an answer. Every time someone came in the room I said, Is that the IV iron? When they said it wasn't I said, "please go check on that, I will not leave the hospital without getting it."

I would advise you to do the same. Call the hematologist say that you've waited and seen. If they still say no, call another. You'll find someone to do it. It's just flat out ridiculous. Don't let them put you off any longer. FOUR MONTHS is more than enough for wait and see. You've done it. Now you want the IV. That's IT.

As for the reason why? I knew why. I was bleeding non-stop vaginally for two years straight. Actually more accurately I was hemorrhaging for 2 years straight. No one could tell me WHY I was bleeding though.

I apparently had incompetent people doing my ultrasounds. That included 2 gynecologists. And one professional lab person.

SOMEHOW over a 2 year period. And through FIVE Ultrasounds. EVERYONE missed the fact that I had a 3 cm polyp in my uterus. Dead center. Which is what caused my 2 years of non-stop bleeding hell.

I finally went to at THIRD gynecologist. This one was a specialist in bleeding problems. Not babies. And he did ANOTHER ultrasound "just for kicks" and found it. Said it was "impossible to miss unless you are blind."

So... had that puppy taken out. Bleeding stopped. Anemia went away. But the IV Iron was what stopped me from having to get more transfusions. I just would NOT take no for an answer on that.

Sometimes you HAVE to be a take no prisoners advocate for your own health and push an issue till they sick and tired and just GIVE IN.

Well that's horrific. I'm glad it was "just a polyp" (bad, but I know where my brain would be going with the mystery bleeding).

 

[Gypsy]

Oh my brain went there.

The reason I went to the 3rd gynocologist is because both the other doctors wanted me to get a full hysterectomy. At 35.

It was a last ditch hope for a "third opinion" that paid off.

You need to become a complete and utter pain in the neck. The squeaky wheel gets the oil. Trust me. Get either the injections or the IV. Take no prisoners.

 

[LLJsmom]

I know how it is. Sucks to be cold and tired all the time. I am also off the charts low. I started losing a ton of my hair in Sept - Dec. So I went on supplements, 65 mg 3x a day, per doctor. It's been about 2 months, and I'm losing less hair. I'm also eating a lot of iron from animal sources. The body absorbs more iron from animal sources than plant. I have increased my meat intake significantly, so I think that helps. But it takes a very long time to rebuild your stores, per my cousin, a doctor (but not mine). Good luck and hope that injections help. Come back and tell us.

I also take a daily multi, D, C, Electrolytes, Calcium. But I've been anemic my whole life. It apparently runs in my family, something about small red blood cells.

 

[Ally T]

Sounds like you are having a nightmare

I am always having my iron monitored due to a blood clotting disorder - Von Willibrands Disease. I have a lack of Factor 8 which means i am a bleeder. I don't clot very well so any cut will bleed excessively & periods are a nightmare that i take medication to stop after 4 days. Whilst everyone here is different & some people take strong medications etc, what I would like to offer is simple changes to diet, which have really helped balance me out when I get very low & need ferritin injections. My specialist taught me these little things many moons ago.

No caffeine 45 minutes before a meal or an hour after, as it prevents iron absorption.
Eat a medium/rare steak twice a week. As bloody as you can stand.
Drink fresh, not from concentrate orange juice as you eat. The vitamin C promotes the absorption of iron.
Absolutely loads of green leafy vegetable such a kale, spinach, broccoli.
Snack on a mixture of nuts & seeds.

Unless I am very low, the Dr always let's me have 2 weeks of diet 'adjustments' before testing again, and usually it has significantly helped & result in less medication.

Good luck!

 

[chemgirl]

Gypsy: glad it's all sorted for you now! All of this started for me when I went to the er with abdominal pain and lower gi bleeding. The bleeding stopped in September, but I had to fight like crazy to find out why and hopefully prevent it from happening again. I must have been to hospitals and doctors 20 times in September and October to get a diagnosis. When the infection was eradicated I thought the anemia would start to get better. No such luck, so it looks lime i'm going to have to be a pain in the a** again.

LLJsmom: good to hear that things are improving. For me, I fully expect the stored iron to take ages to go up, but I was under the impression that saturation, hemoglobin etc should bounce back faster. I also take a multivitamin and a b complex. I think its helping overall. Just remember don't take your multi with your iron since calcium will block iron absorption!

AlexT: thanks for the advice! At first I was doing everything wrong, but over the last 3 months or so I have cut out coffee, tea, and milk completely. I make a rare roast beef every Sunday and eat it in my lunch every day. I also eat shellfish at least twice per week and loads of broccoli and broccoli sprouts. I can't stomach orange juice yet due to gastritis from the h pylori infection so I take chewable vitamin c before meals. All of this has made zero difference so i'm getting freaked out that something major is going on!

Thanks ladies for sharing your stories. It helps to know i'm not the only one with this.

 

[Ally T]

Chemgirl, there is a rare condition where your body just simply loses its ability to store iron, without rhyme or reason. My MIL was diagnosed 2 years ago but I can't remember the term - you'll have to Google. She's a veteran runner & suddenly noticed her times were getting bad. She had tests & they found she had really low iron, had an endoscope & colonoscopy, but everything was negative. She was getting worried that something sinister was going on. And then as quickly as her iron dropped, it picked up again 6 months later & they took her off her medication. She has had one relapse since, but there is no medical explanation as such. She just becomes deficient quite severely & quickly, but will recover a few months later. Bizarre, but hopefully it is something like this which is affecting you.

 

[Skippy123]

I have only been anemic one time in my life. Are you taking Vit C too? Vit C helps you absorb the iron better. Iron skillets are great for cooking and sneaking in iron that way too. I am guessing you probably already done those things. sorry and hugs!

 

[Kelinas]

I know how it is. Sucks to be:cold and tired all the time. I am also off the charts low. I started losing a ton of my hair in Sept - Dec. So I went on supplements, 65 mg 3x a day, per doctor. It's been about 2 months, and I'm losing less hair. I'm also eating a lot of iron from animal sources. T
...
I also take a daily multi, D, C, Electrolytes, Calcium. But I've been anemic my whole life. It apparently runs in my family, something about small red blood cells.

FYI - it isrecommended that you take vit c WITH your iron sincep C helps with the absorption, and avoid taking calcium at the same time since Iron and Calcium fight for absorption.,
I was told to take my calcium at night.

 

[chemgirl]

Thanks for all of the advice!

A bit of background about me. I originally wanted to be involved in health research and did a double major in biology and neuroscience. I worked in the research department at a hospital overseeing clinical trials and writing literature reviews. It was my job to read medical journals and flag pertinent articles. Then I decided to go back to school for biochemical engineering. I ended up switching to pure chemical because the biochemical was a 5 year program. Then I continued to do a masters in chem eng, but a medical based thesis. Now I work in R&D.

So at this point I have read loads of articles and am doing everything possible to aid absorption from a chemical standpoint. I am also a pain to deal with because I ask questions about everything. I know the doctor went to medical school and knows more than I do, but if they're doing something that doesn't make sense to me I ask about it. I find i'm getting the run around from some medical professionals who seem to think i'm just googling everything and reading about my symptoms on yahoo answers.

Its just very frustrating.

 

[SMC]

I had low iron too and my doctor said it was because I have heavy periods. Once I got on birth control and my cycles were lighter and more regular, my iron deficiency stopped. I also supplemented with a prenatal vitamin (high in iron) though I wasn't trying to get pregnant.

Edit to add that I'm really sorry you're going through all this! I'd definitely look into transfusions if that will help with your energy.

 

[justginger]

From a haeme POV, you seem to be doing everything right. Something is still wrong. Have they tested your ferroportin levels? Your hepcidin? It sounds like you are still shedding too much iron via your GI tract - since it sounds like supply should be plentiful, you have to consider what is preventing its uptake. Hepcidin is always my first guess in cases like that.

Sometimes it does take a good number of months to see an increase of ferritin while on oral supplements. Generally with microcytic, hypochromic anaemia, they pop you on oral supplements for a year and reassess at that point. I'm not that surprised they're not doing anything at the 4 month mark, but I am surprised you didn't mention your hepcidin levels - double check that they've been tested before doing anything else.

 

[iluvshinythings]

I ended up a couple of quarts low after my back surgery and my doctor elected not to give me a transfusion. I've been anemic ever since. I tried the supplements and they caused horrible side effects. (massive constipation - sorry for the TMI) So for the last couple of years I've eaten red meat at least once a day and I eat fruit or veggies that are high in vitamin C as often as possible. I also agree with the iron cookware suggestion. I'm still slightly anemic but my iron levels are much, much better after following this diet.

I hope you get a good diagnosis soon! It's miserable!

 

[chemgirl]

For some reason I can't quote from my phone.

JustGinger the only lab work specific to the anemia has been CBC and ferritin (twice). Nothing else.

That is a huge part of the frustration. The nurse will lecture me "you have to take the pills every day!" but I am. I get sent for blood work every month and I keep on checking the requisitions. I call back whenever I see CBC only and don't really get anywhere.

I am thinking its something GI related so am working with my specialist to rule out as much as possible. Maybe a food intolerance?

 

[chemgirl]

Was told the chances of thalassemia are low because i'm of Irish descent. Checking would be nice though.

 

[justginger]

For some reason I can't quote from my phone.

JustGinger the only lab work specific to the anemia has been CBC and ferritin (twice). Nothing else.

That is a huge part of the frustration. The nurse will lecture me "you have to take the pills every day!" but I am. I get sent for blood work every month and I keep on checking the requisitions. I call back whenever I see CBC only and don't really get anywhere.

I am thinking its something GI related so am working with my specialist to rule out as much as possible. Maybe a food intolerance?

It's time to find a new doctor. You should have had a full iron workup done, including serum iron, serum ferritin, transferrin saturation, hemoglobin, and hepcidin. They are ignoring the root cause in a case where iron supply seems to be a non-issue. I stopped eating red meat altogether around 18 months ago - if (when) I become anaemic, the root cause is obvious. Here it is not, and in order to provide a proper diagnosis, they need to do a full screen. If these have not been tested for yet, they need to be - and by a professional who actually gives a damn about finding the actual cause, not just throwing supplements at the symptoms.

 

[pregcurious]

Was told the chances of thalassemia are low because i'm of Irish descent. Checking would be nice though.

UGH! So frustrating!

I was anemic during both of my pregnancies, and I found that eating a lot of eggs (yolks) helped. I didn't tolerate the supplements very well.

 

[chemgirl]

Thanks for the support!

I think i'm stressing about this so much because we were TTC and then had to stop. Just disappointed.

I'm in Canada so while I am on the waiting list to meet with another doctor I have no idea when or if I can switch. I have another blood test in a few weeks and plan to go in once those results come back. The doctor isn't reviewing my file, the nurse practitioner is supposed to review and flag concerns. His name isn't on any of the requisitions. Apparently that's normal here.

 

[AprilBaby]

I think normal is about 15. One day at work I fainted after lunch. I am overweight and had noticed I was huffing and puffing so I assumed it was cardiac. At the hospital we realized my iron was 8. Too many heavy periods. Got a hysterectomy and iron supplements but it took months to go up. My heart is fine. My iron is great now ( 7 years later).

 

[LLJsmom]

I know how it is. Sucks to be:cold and tired all the time. I am also off the charts low. I started losing a ton of my hair in Sept - Dec. So I went on supplements, 65 mg 3x a day, per doctor. It's been about 2 months, and I'm losing less hair. I'm also eating a lot of iron from animal sources. T
...
I also take a daily multi, D, C, Electrolytes, Calcium. But I've been anemic my whole life. It apparently runs in my family, something about small red blood cells.

FYI - it isrecommended that you take vit c WITH your iron sincep C helps with the absorption, and avoid taking calcium at the same time since Iron and Calcium fight for absorption.,
I was told to take my calcium at night.

Ok thanks so much for the reminder. Will do. Just had an orange with my iron pills today.

I so agree with the poster who talked about constipation. It forces me to eat lots of stuff with lots of fiber! I eat at least three apples a day and drink tons of water. Love VBMs!! Omg. I know. TMI!!

Sorry chem girl for the little thread jack. I may need to do what you're doing if this does not work.

 

[justginger]

Thanks for the support!

I think i'm stressing about this so much because we were TTC and then had to stop. Just disappointed.

I'm in Canada so while I am on the waiting list to meet with another doctor I have no idea when or if I can switch. I have another blood test in a few weeks and plan to go in once those results come back. The doctor isn't reviewing my file, the nurse practitioner is supposed to review and flag concerns. His name isn't on any of the requisitions. Apparently that's normal here.

Please let the nurse know that you'd like a full iron panel work up done, not just ferritin. Mention the things I listed above, especially hepcidin - it is the master iron regulatory molecule in the body. A good haematologist will perhaps be able to glean a less obvious cause of anaemia from the results of such a panel...or it still could just be a matter of waiting, as iron stores take time to build. A transfusion would help immediately, or even a direct intravenous injection, but they are unlikely to order that unless your levels are dangerously low and/or you are pregnant.

 

[chemgirl]

Update!

I had a doctors appointment today and went in armed with questions and a list of tests.

He had my new blood work and it showed improvement! Hemoglobin is now 13 (normal) although still slightly microcytic (but better than last time). Ferritin is up to an 8 from undetected.

Still needs improvement, but vastly better than one month ago. I will continue taking the Proferrin and have a recheck in 3 months.

Hope it's better from here!

Thanks for your support!

 

[missy]

Update!

I had a doctors appointment today and went in armed with questions and a list of tests.

He had my new blood work and it showed improvement! Hemoglobin is now 13 (normal) although still slightly microcytic (but better than last time). Ferritin is up to an 8 from undetected.

Still needs improvement, but vastly better than one month ago. I will continue taking the Proferrin and have a recheck in 3 months.

Hope it's better from here!

Thanks for your support!

YAY!!! Happy to hear you are doing well chemgirl! Sending lots of dust for continued progress.