Anemic Related...What's Next?

[NatashaDisneyCM]

I have undergone two separate treatments ( 3-4 treatments each time) for extremely low anemia. I just got an update regarding my blood work and a call, and the IV treatments are not working! I have been a vegetarian for several years now and have even gone as far as to start eating chicken again, and trying to eat the foods that are high in Fe.

So my question is...what happens now if they cannot get my levels up?
I have looked online and do not care about what it is I see.

please tell me your experiences?

thanks

 

[Christine]

I don't have any advice for you but everything I've read says that if you don't respond to IV iron infusions, you need to look for another cause for the iron-deficiency anemia. Have you undergone all of the testing?

I have a woman in my office who take them and she is finding that she has to have it done every 6 months. She does absorb the iron initially but she cannot hold it.

If you can't absorb IV iron, I don't think eating meat is going to help.

I'm a real ray of sunshine aren't I??

 

[IngridRalph]

One of my daughters few signs of having celiac was being extremly anemic. Just an idea.

~Ingrid

 

[Sgt Mickey]

I know vit c helps you absorb iron so do you take any vitamins?

 

[Nette]

Have they checked your b12 and folate? I know my anemia worsens when I don't have all three in balance.

 

[Imzadi]

I agree there may be other causes.

Are ou having extremely heavy periods?

I am. I'm getting periods nearly twice a month now and they last forever. I thought it was simple "periomenopause." After a check up & testing with my gyn, I have found I need to throw out that word. Turns out, I have hypothyroidism, which causes heavier bleeding, which caused fibroids, which caused more heavy bleeding, which caused the severe anemia I got.

I'm taking Hema-Plex iron supplements, which is vegetarian. I get it from health food stores. It has worked on my anemia. But, mine is not as severe as yours. It might be something to talk to your dr. about. But, of course follow his regimin.

 

[TLHB70]

I wanted to jump in this thread to follow along. Just last week I brought my 15 year old and soon-to-be 12 year old in for their annual well exams. They both were on their periods at the time of the exam. Well, the pediatrician did a finger stick to do a CBC on them. She called later that afternoon and told me that their iron levels were slightly low; they are slightly anemic. She told me to give each of them a slow iron tablet each day. So I have added that to their daily multi vitamin, vitamin c supplement, and vitamin d supplement. I asked the pharmacist about it when I was at CVS getting the iron. She said that this is normal in teenage girls, but I have never had low iron levels, and I do not take iron. Their multi vitamin has iron in it, but they need extra. I asked the doctor if their periods could cause it, but she acted like it wouldn't affect it that much. So I want to learn what I can here.
I think my mother-in-law is severely anemic! I posted a thread about it in January. (http://www.disboards.com/showthread.php?t=2361423 ) She eats ice CONSTANTLY!!!! She carries a cup of it around with her all day and eats it with a spoon. She even carries it in the car with her when she runs errands, shops, etc. I told DH about it. I even had him read some of the comments DISers posted about on the thread and on PMs. He did mention it to her, and now she will comment that she is "probably anemic." However, as far as I know, she has never had it checked. I cannot do anything else, and DH cannot get anywhere with her. I am thinking that reading this thread will help me know more about her situation too. Maybe I will learn something else here that I can pass on to DH that will help him convince her to have it checked.

 

[Christine]

I know I'm not the OP here but I wanted to add to what she said. She has been found to have anemia (iron deficiency type obviously) and she is on the last-line, max treatment for iron deficiency anemia (if I read her post correctly). If she is not responding to IV infusion iron, no oral iron, no vitamin C, etc. is going to work on her.

The thoughts now are "what are the causes that she cannot store the massive amounts of iron they are infusing her with?" IV iron infusions, for the most part, will correct iron deficiency due to heavy periods or malabsorption issues.

 

[Gigi22]

I used to be anemic, but not as seriously as the OP. I was able to raise my Fe levels through vitamin supplements. After my levels stabilized, I was put on Materna (pregnancy) multivitamins for about 5 years. From what my dr. told me at the time, if the dr. cannot get a patient's iron level raised, the dr. will do tests to find out if the patient is bleeding internally. It would likely be worthwhile for the OP to discuss going off her vegetarian diet with her dr.

 

[Aimeedyan]

Your team of doctors need to find the cause.

I am on weekly iron infusions - it takes a long time to get your levels up. Have they actually told you there is nothing else to do? When you say treatment, do you mean an iron infusion or a blood transfusion? What iron are you on? What dosage? How long are you going between infusions?

 

[NatashaDisneyCM]

well, I have had stomach issues to which I am well aware of. They have been running all exams on me. Colon, and rectal cancer run in my family as well as crohn's. So I am thinking where I do have ulceration's on the distal part of my ileum, that do cause malabsorption.. to which I have.

But I have seen were they go as far as blood transfusions. Has anyone had to go that far?

I ate some chicken today, and I just cannot do it, it made me sick and I just cannot deal.
I am waiting on my doctor to come back from Spain. lol He has the test results that I have gone thru and I only want results from him.

I just do not have the energy to do anything!! I thought it was me, I am now guessing it is the lack of Fe?? lol

 

[Christine]

well, I have had stomach issues to which I am well aware of. They have been running all exams on me. Colon, and rectal cancer run in my family as well as crohn's. So I am thinking where I do have ulceration's on the distal part of my ileum, that do cause malabsorption.. to which I have.

But I have seen were they go as far as blood transfusions. Has anyone had to go that far?

I ate some chicken today, and I just cannot do it, it made me sick and I just cannot deal.
I am waiting on my doctor to come back from Spain. lol He has the test results that I have gone thru and I only want results from him.

I just do not have the energy to do anything!! I thought it was me, I am now guessing it is the lack of Fe?? lol

Well, even if your ulcerations are causing malabsorption, the IV iron treatments should take care of that. So your bigger problem is to find out why you are not "holding" the iron that you get by IV (that is bypassing your digestive system). Your bone marrow should be absorbing it (it's not quite such a simple process but, eventually, that's the final destination for it).

And, yes, the lack of iron will make you feel awful, make you mentally slow, and a host of other things. My low iron felt much worse than when my thyroid function was low.

 

[Imzadi]

I know I'm not the OP here but I wanted to add to what she said. She has been found to have anemia (iron deficiency type obviously) and she is on the last-line, max treatment for iron deficiency anemia (if I read her post correctly). If she is not responding to IV infusion iron, no oral iron, no vitamin C, etc. is going to work on her.

The thoughts now are "what are the causes that she cannot store the massive amounts of iron they are infusing her with?" IV iron infusions, for the most part, will correct iron deficiency due to heavy periods or malabsorption issues.

I figured it was more severe than anything I have. That's why I made sure to write, don't just go on what worked for someone on the internet, and chuck what your doctor has you do.

I asked the doctor if their periods could cause it, but she acted like it wouldn't affect it that much. So I want to learn what I can here.

Their dr. is currently a pediatrician? Perhaps he's not up on the latest info as that is not his specialty. If you ask a GYN who specializes in period stuff, they will tell you yes, it may be a cause of anemia. It depends on how heavy the flow, how long, other variables, etc.

I think my mother-in-law is severely anemic! I posted a thread about it in January. (http://www.disboards.com/showthread.php?t=2361423 ) She eats ice CONSTANTLY!!!! She carries a cup of it around with her all day and eats it with a spoon.

Yes, she has a condition known as Pica. Google it. I found out, on my own that my previously diagnoses "slight anemia" had gone to severe, because I was majorly addicted to Altoid mints. I was CHEWING Altoids. Who chews Altoids? One is so strong. But, not for me. I was chewing two at a time, and could go through a whole tin in an day & a half. I've read other people went through a couple tins a day, until they were diagnosed.

People who have Pica chew what are considered non-nutritious food items, like ice and mints, to totally non-food items, like chalk or toothpaste, because their body is craving iron to such a degree, it's trying to chew & suck out iron from whatever it thinks it can get iron from, even if the product - ice, mints, chalk, toothpaste, does not really contain any iron.

I'll see if I can dig up the runners forum thread where many people stated they had pica and other severe iron-deficiency anemia symptoms, so you can check & see how many other symptoms your MIL probably has. If she has Pica, then she most likely exhibits many of the other symptoms, too. When I read that thread, I found I had ELEVEN of the symptoms. I almost ran out to the 24 hr drugstore at 3am when I read that thread, to go get iron supplements.

Instead, I went to my health food store the next day. I was recommended the Hema-Plex I mentioned above. It has 85mg of iron. Is a vegetarian supplement. Amazon has some reviews for it. Perhaps she will try it as you can get it over the counter at a health food store? (This does not mean she shouldn't also get medical testing.)

Within several hours, a lot of the brain fog & exhaustion I had lifted. (The rest is due to the hypothyroidism, but that's another story.) And in a day and a half, my cravings for Altoids was totally gone. That was a year & a half ago. I still have 3 tins of Altoids I have never touched.

Of course, then I finally went and got proper blood testing to find out what my levels are.


ETA: I found the runners thread. It really helped me, as instead of a list of symptom, reading about people writing about anemia through their layman's terms experiences helped me realize how bad my anemia had gotten. The usual list of anemia symptoms are the same as the symptoms for so many other issues. Reading about the chewing of ice or mints, planning so I could sleep all day, helped nail it for me. This may help your MIL to go get checked.

http://www.coolrunning.com/forums/Forum4/HTML/010015-2.shtml

 

[curious3069]

well, I have had stomach issues to which I am well aware of. They have been running all exams on me. Colon, and rectal cancer run in my family as well as crohn's. So I am thinking where I do have ulceration's on the distal part of my ileum, that do cause malabsorption.. to which I have.

But I have seen were they go as far as blood transfusions. Has anyone had to go that far?

I ate some chicken today, and I just cannot do it, it made me sick and I just cannot deal.
I am waiting on my doctor to come back from Spain. lol He has the test results that I have gone thru and I only want results from him.

I just do not have the energy to do anything!! I thought it was me, I am now guessing it is the lack of Fe?? lol

I ended up having a blood transfusion. I guess it helped a little, but my anemia was period related. Once I had a hysterectomy, I got back to normal with just vitamins.

Hang in there and push your Dr's to find answers...anemia is beyond HORRIBLE when it gets really bad. You need to get that energy back!!!!!

 

[Imzadi]

but my anemia was period related. Once I had a hysterectomy, I got back to normal with just vitamins.

Hang in there and push your Dr's to find answers...anemia is beyond HORRIBLE when it gets really bad. You need to get that energy back!!!!!

My gyn is trying to get me scheduled me for a fibroid embolization instead of a hysterectomy.

I agree with you, anemia is beyond HORRIBLE. I feel for you OP. I hope you get the solutions & remedies you need.

 

[TwinsinCA]

I wanted to jump in this thread to follow along. Just last week I brought my 15 year old and soon-to-be 12 year old in for their annual well exams. They both were on their periods at the time of the exam. Well, the pediatrician did a finger stick to do a CBC on them. She called later that afternoon and told me that their iron levels were slightly low; they are slightly anemic. She told me to give each of them a slow iron tablet each day. So I have added that to their daily multi vitamin, vitamin c supplement, and vitamin d supplement. I asked the pharmacist about it when I was at CVS getting the iron. She said that this is normal in teenage girls, but I have never had low iron levels, and I do not take iron. Their multi vitamin has iron in it, but they need extra. I asked the doctor if their periods could cause it, but she acted like it wouldn't affect it that much. So I want to learn what I can here.

A few weeks ago I brought my daughters in for their well visit. One of my daughters had a low reading. I have identical twins who basically eat the same things, so I couldn't figure out why there would be a nearly 4 point difference in their levels.

We started her on the doctor prescribed iron drops and it was a pain. She had to wait to eat after, she couldn't lay down after she took it, it was hard to find a juice that masked the taste, etc. After a week I took her back in to be retested because I had a hard time believing she really had low iron. I didn't want to deal with another 6 weeks of that for nothing. Turns out her levels are just fine. There was either a testing error or they possibly got her sample mixed up with her sister's (I am half tempted to get HER retested, but haven't).

Everything I read that week said that having your period can affect your hemoglobin level. My daughters don't have that issue yet, but I thought I'd throw that out there and also mention that the tests can sometimes give false readings.

OP -- I hope they can figure out a way to get/keep your levels up.

 

[TLHB70]

I figured it was more severe than anything I have. That's why I made sure to write, don't just go on what worked for someone on the internet, and chuck what your doctor has you do.




Their dr. is currently a pediatrician? Perhaps he's not up on the latest info as that is not his specialty. If you ask a GYN who specializes in period stuff, they will tell you yes, it may be a cause of anemia. It depends on how heavy the flow, how long, other variables, etc.




Yes, she has a condition known as Pica. Google it. I found out, on my own that my previously diagnoses "slight anemia" had gone to severe, because I was majorly addicted to Altoid mints. I was CHEWING Altoids. Who chews Altoids? One is so strong. But, not for me. I was chewing two at a time, and could go through a whole tin in an day & a half. I've read other people went through a couple tins a day, until they were diagnosed.

People who have Pica chew what are considered non-nutritious food items, like ice and mints, to totally non-food items, like chalk or toothpaste, because their body is craving iron to such a degree, it's trying to chew & suck out iron from whatever it thinks it can get iron from, even if the product - ice, mints, chalk, toothpaste, does not really contain any iron.

I'll see if I can dig up the runners forum thread where many people stated they had pica and other severe iron-deficiency anemia symptoms, so you can check & see how many other symptoms your MIL probably has. If she has Pica, then she most likely exhibits many of the other symptoms, too. When I read that thread, I found I had ELEVEN of the symptoms. I almost ran out to the 24 hr drugstore at 3am when I read that thread, to go get iron supplements.

Instead, I went to my health food store the next day. I was recommended the Hema-Plex I mentioned above. It has 85mg of iron. Is a vegetarian supplement. Amazon has some reviews for it. Perhaps she will try it as you can get it over the counter at a health food store? (This does not mean she shouldn't also get medical testing.)

Within several hours, a lot of the brain fog & exhaustion I had lifted. (The rest is due to the hypothyroidism, but that's another story.) And in a day and a half, my cravings for Altoids was totally gone. That was a year & a half ago. I still have 3 tins of Altoids I have never touched.

Of course, then I finally went and got proper blood testing to find out what my levels are.


ETA: I found the runners thread. It really helped me, as instead of a list of symptom, reading about people writing about anemia through their layman's terms experiences helped me realize how bad my anemia had gotten. The usual list of anemia symptoms are the same as the symptoms for so many other issues. Reading about the chewing of ice or mints, planning so I could sleep all day, helped nail it for me. This may help your MIL to go get checked.

http://www.coolrunning.com/forums/Forum4/HTML/010015-2.shtml

Thank you so much for the link to the runners thread. Yes, she does exhibit other symptoms. She is tired all of the time! She takes naps each day, sometimes twice a day. I am going to forward her the link. Maybe she will read it. I want DH to read it to.
Yes, my DDs still go to a pediatrician. Older DD just turned 15 a week ago. Younger DD will turn 12 in two months. I take them each year before school for routine well checkups. This year it just so happened to hit while they were on their periods. We are all on the same cycle here now, within a few days of each other. I figured that the bleeding could do that; it only makes sense to me!

 

[bumbershoot]

Just in case ou do want to try supplements still...

Have you tried Floradix? It's at the health food store, it's veggie, it's a liquid, and it's pretty awesome.

I'm vegetarian and except for one period of time in my life where something bad had happened and no one told me that my iron was drastically low, my iron has always been great. Better than most of my omnivorous friends.

If you're taking supplements along with vitamin C containing foods, sometimes we take them with OJ. And sometimes people use OJ with added calcium. But calcium blocks the uptake of iron, so you're not helping anything but your vitamin C needs. If by ANY chance you're taking Ca along with the iron, change that.


Good luck, it can't be fun! I KNOW it's not fun, especially when you haven't a single clue of the problem (until you read your medical records and notice the hemoglobin level you were released with but never told of...a level that was half a unit above what a friend was transfused for...).

 

[TLHB70]

A few weeks ago I brought my daughters in for their well visit. One of my daughters had a low reading. I have identical twins who basically eat the same things, so I couldn't figure out why there would be a nearly 4 point difference in their levels.

We started her on the doctor prescribed iron drops and it was a pain. She had to wait to eat after, she couldn't lay down after she took it, it was hard to find a juice that masked the taste, etc. After a week I took her back in to be retested because I had a hard time believing she really had low iron. I didn't want to deal with another 6 weeks of that for nothing. Turns out her levels are just fine. There was either a testing error or they possibly got her sample mixed up with her sister's (I am half tempted to get HER retested, but haven't).

Everything I read that week said that having your period can affect your hemoglobin level. My daughters don't have that issue yet, but I thought I'd throw that out there and also mention that the tests can sometimes give false readings.

OP -- I hope they can figure out a way to get/keep your levels up.

Thank you! That makes more sense to me. It makes me feel better.
With my mother-in-law having it (I am sure!), it made me a bit concerned that it may be hereditary somehow and that they are getting it because of her. They are handling the iron supplements fine, but maybe I should go have them rechecked.

 

[MamaLema]

Severe anemia can cause depression and if you can't get your levels up, you may need a blood transfusion one day. This was my experience. It has taken a full 3 years to get my levels up.

I received shots for 6 weeks in the butt to jump start the process. On top of that I have taken a high quality brand of iron, not those cheap-o $5 bottles at the drugstore. Those will not help one bit if your anemia is severe. Be patient, it does take a long time to get there.

After so many years of misery, I am healthy and happy again. I wish the same for you.