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NEW UPDATE + Question - Heart Problems vs Anxiety in teen? or something else entirely?


Ann.without.an.e
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10 minutes ago, 5lilpumpkins said:

 

I would not be satisfied until she is in a chair getting iron transfusions. Is there a good evidence based reason she is not having this prescribed? She will start feeling better immediately. She needs this. Demand it.

http://www.hematology.org/Patients/Anemia/Iron-Deficiency.aspx

If they are concerned about allergies, a red blood cell transfusion? Preferably from a screened peer. It really does make a difference the age of your blood donor!

 

I asked and they said she just needs large, very large doses of iron.  Her body should do what it needs quickly if it has the iron.

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17 minutes ago, Attolia said:

Ok final levels are in.

Hemoglobin is a 7

Her blood level ferritin range is supposed to be between a 15-150 and it is a 1.

Her serum iron is supposed to be between 60-180 and it is a 2.

NP and Doctor said they've never seen levels that low and they have no idea how she walked in there. 

They think this is 100% a deficiency.  

Have we told her that she can't be a vegetarian AND avoid most veggies?  Yes, yes we have.

She is now on extremely high doses of iron. They will retest in a month.  If levels don't increase she will see a hematologists.  They still want her to see cardiology though, ugh.

 

ETA - what if the HIVE hadn't suggested this?  How did I miss this?  Would we have seen a cardiologist and still left without iron checked?  Who knows.

When my numbers were that low my doctor demanded that I go to the hospital *immediately* for a blood transfusion.

I think waiting a month is not being aggressive enough.

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18 minutes ago, 5lilpumpkins said:

 

I would not be satisfied until she is in a chair getting iron transfusions. Is there a good evidence based reason she is not having this prescribed? She will start feeling better immediately. She needs this. Demand it.

http://www.hematology.org/Patients/Anemia/Iron-Deficiency.aspx

If they are concerned about allergies, a red blood cell transfusion? Preferably from a screened peer. It really does make a difference the age of your blood donor!

Yes.

Even if the cause is known, she needs immediate treatment.  Trying to bring her iron levels up slowly over the next month, ime, is just not good enough.

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A person can be that anemic from vegetarianism and menstruation if it's gone on long enough, but it's a rule out diagnosis.  There are reasons not to jump to an iron transfusion or a blood transfusion, I've been there and am not a candidate for either, there are criteria, but that is usually handled by a hematologist.

My concern is that it doesn't appear that they did all the test to differentiate that.  Did they do MCV,  TIBC, and iron saturation?  How are her platelets? If not then ask for the referral for the hematologist now.  Studies are showing faster and more successful treatments with ferrochel and other chelated iron products versus the traditional salts, please make sure she is on the appropriate product, at the appropriate dose.  Many GP don't prescribe high enough doses to effectively bring the iron levels up quickly.  

Edited by melmichigan
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21 minutes ago, Attolia said:

She is now on extremely high doses of iron. They will retest in a month.  If levels don't increase she will see a hematologists.  They still want her to see cardiology though, ugh.

 

ETA - what if the HIVE hadn't suggested this?  How did I miss this?  Would we have seen a cardiologist and still left without iron checked?  Who knows.

 

Younger boy and my results won’t even that low and the clinic wanted us to do another blood test within a week. Anemia runs on my side of the family so doctors tend to check me and my kids based on family history. They won’t check my husband though unless he explicitly request to be tested for anemia because there is no known medical history. My mom had fibroids which worsen her anemia.

When we relocated to the US, my pregnancy was already classified as high risk by my previous obgyn. The US obgyn that I saw said that the thick stack of medical history my previous obgyn supplied helped in getting additional tests approved by insurance. Mother medical history was sufficient for my kids to be tested and paid for by insurance.

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9 minutes ago, melmichigan said:

A person can be that anemic from vegetarianism and menstruation if it's gone on long enough, but it's a rule out diagnosis.  My concern is that it doesn't appear that they did all the test to differentiate that.  Did they do MCV,  TIBC, and iron saturation?  How are her platelets? If not then ask for the referral for the hematologist now.  Studies are showing faster and more successful treatments with ferrochel and other chelated iron products versus the traditional salts, please make sure she is one the appropriate product at the appropriate dose.  Many GP don't prescribe high enough doses to effectively bring the iron levels up quickly.  

 

I need to get the lab report. They called with the info. They did a full CBC and several other things. They are actually recommending 65mg twice a day since she’s vegetarian. I found something at vitamin shoppe to give her in lieu of the prescription. 

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12 minutes ago, Attolia said:

 

I need to get the lab report. They called with the info. They did a full CBC and several other things. They are actually recommending 65mg twice a day since she’s vegetarian. I found something at vitamin shoppe to give her in lieu of the prescription. 

Is it an iron salt or a chelated iron preparation, and is that 65mg of elemental iron?

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Poor girl 😞

I felt like death with a ferritin of 11- I took over 100 mg of chelated iron with that level and it worked well but considering where she's at I think the transfusion is a great idea, especially considering how she's suffering 😞 

I concur with PP's I'd not be happy with those dr's, I think it would be negligent to not look for a cause. Considering everything testing for Celiac and Crohn's seems like a complete no-brainer.

FWIW I take NDT but half my dose is NDT and half T3, I do not convert T4 very well so my RT3 shoots up if I go any higher in NDT, it took ALOT of tweaking to find the right levels. 

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Most carbs are iron fortified these days, I would NOT accept diet as an explanation. You don’t get iron from veggies anyway. Hecka serving of Cheerios has25 percent RDA! She’s obviously not absorbing her iron properly.push for them to check for celiac- they may be able to call the lab and addition without drawing more blood. Did they check b12?

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It is not 100% accurate that you don't get iron from veggies (though it isn't nearly as bioavailable as the iron in animal products)... but it is certainly true that with the amount of fortification in everything that she shouldn't be that low just from not eating her greens.

Please go back to the doctor or straight to the ER and insist on a transfusion. Sit there and yell and fuss and throw a stinking huge fit until they give her one, or at least prove that there's a damn good reason she shouldn't have one.

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I realize that everyone is concerned, as am I, but this an otherwise healthy teen, who has been vegetarian, has a simple cardiac clearance, and is assumed to have simple chronic anemia (if a full screen was preformed).  The hemoglobin is in range with the recommendations that the physician has given based on the patient age.  Could a hematologist possibly be more aggressive?  It depends on the individual history, allergies, and the amount of risk the family deems acceptable.

 

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33 minutes ago, Ktgrok said:

LOTS of people are vegetarian and not severely anemic. Vegetarian isn’t a good enough explanation. 

Has she had a recent growth spurt, does she have long or heavy menstual periods?  There are reasons doctors become concerned when young girls are vegetarians.  If it has been left unaddressed for years, it most certainly can be simply from poor diet and lack of supplements.  I have a 16 year old vegetarian!  We monitor supplements carefully and check blood work every six months at a minimum.  I screen my child myself for anemia on a weekly basis because I have had chronic anemia from the time I was an adolescent.  When low I take 200mg of elemental iron a day.  We are both followed by hemotologist and cardiologist, among many other specialist, but everything else that would cause anemia has been ruled out, and both of us respond to oral iron, as long as it isn’t salts.

Edited by melmichigan
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I will add that most insurances will not cover a transfusion in someone this age, with chronic versus acute anemia, that is stable and hasn’t done a oral trial of iron. The overall results would differ by 2-3 weeks if one opted for the IV, and the you have to consider the risks involved.  There is a reason they just lowered the threshold for hemoglobin in a stable patient, and that was from fatal sensitivities to the infusions.

 

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2 hours ago, melmichigan said:

Is it an iron salt or a chelated iron preparation, and is that 65mg of elemental iron?

 

31 minutes ago, melmichigan said:

Has she had a recent growth spurt, does she have long or heavy menstual periods?  There are reasons doctors become concerned when young girls are vegetarians.  If it has been left unaddressed for years, it most certainly can be simply from poor diet and lack of supplements.  I have a 16 year old vegetarian!  We monitor supplements carefully and check blood work every six months at a minimum.  I screen my child myself for anemia on a weekly basis because I have had chronic anemia from the time I was an adolescent.  When low I take 200mg of elemental iron a day.  We are both followed by hemotologist and cardiologist, among many other specialist, but everything else that would cause anemia has been ruled out, and both of us respond to oral iron, as long as it isn’t salts.

 

I didn't pick up the script at CVS, instead I went to Vitamin Shoppe and got a amino acid/chelated mixed.  

This is what I purchased 

https://www.amazon.com/Natures-Plus-Hemaplex-Vegetarian-Supplement/dp/B00014EFFQ?th=1

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32 minutes ago, melmichigan said:

Has she had a recent growth spurt, does she have long or heavy menstual periods?  There are reasons doctors become concerned when young girls are vegetarians.  If it has been left unaddressed for years, it most certainly can be simply from poor diet and lack of supplements.  I have a 16 year old vegetarian!  We monitor supplements carefully and check blood work every six months at a minimum.  I screen my child myself for anemia on a weekly basis because I have had chronic anemia from the time I was an adolescent.  When low I take 200mg of elemental iron a day.  We are both followed by hemotologist and cardiologist, among many other specialist, but everything else that would cause anemia has been ruled out, and both of us respond to oral iron, as long as it isn’t salts.

 

No, she hasn't grown since she was 11 or so.  She doesn't have heavy periods. 

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My DD's levels were higher than your DD's and they were aggressive in the treatment.They made us go to the hospital ER and got her admitted,Full work up and transfusion later they came up with an initial diagnosis of Crohns.

The next day was the scope which confirmed it.I am really shocked they sent her home and not the hospital.The iron supplements took a while to fix the deficiency.I'd still keep the cardiologist appointment.There might be an underlying cause to all this.Please don't ignore what all the others have said up thread.

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Just a few random thoughts.  I am not against vegetarians as I am actually a vegetarian as well.  

It does seem odd to me that her levels are that low.  I definitely want to keep an eye on it.  We are going to retest.  I specifically asked the NP about an infusion and she said it isn't necessary since she just needs lots of iron and time.  I think there are risks with that they prefer to avoid?  She didn't say that there is absolutely no other possible cause for the iron deficiency other than diet.  She asked a lot of questions at the office today about bowels, menstrual cycles, etc.  We are focusing on getting her iron up and then we need to talk about more testing. She did say that with her thyroid levels not being optimal that could be a factor as well.  DD has needed a med increase but has been refusing because of the racing heart and chest pains.  If she feels better on supplements then she can take meds and know that they aren't the cause.

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11 minutes ago, Attolia said:

Just a few random thoughts.  I am not against vegetarians as I am actually a vegetarian as well.  

It does seem odd to me that her levels are that low.  I definitely want to keep an eye on it.  We are going to retest.  I specifically asked the NP about an infusion and she said it isn't necessary since she just needs lots of iron and time.  I think there are risks with that they prefer to avoid?  She didn't say that there is absolutely no other possible cause for the iron deficiency other than diet.  She asked a lot of questions at the office today about bowels, menstrual cycles, etc.  We are focusing on getting her iron up and then we need to talk about more testing. She did say that with her thyroid levels not being optimal that could be a factor as well.  DD has needed a med increase but has been refusing because of the racing heart and chest pains.  If she feels better on supplements then she can take meds and know that they aren't the cause.

Oh absolutely Google Venofer. From what I know that is generally what is given in an Iv form,it does have risks as with anything else.So I do understand why they want to avoid that but having said that there are kids like my Ds who actually tolerate it well.At the least a hematologist should be involved as they deal with this everyday.Also the fact that she hasn't grown after age 11 seems that there could be an underlying cause.I have been a vegetarian for most of my life.I finally started eating meat and eggs after I had a host of issues that got caught while I was pregnant with ds. Glad you are going to keep a very close eye,do get her heart checked up while she is still getting her supplements.GL

 

Edited by mominco
Needed to add a few more thoughts
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The iron you purchased is a chelated iron and contains b12 (assuming methyl b12 I couldn’t find it on the listing), folate, and Vit C, which are all recommended by my hematologist. I take Thorne Ferrasorb, which is similar to what you have listed, and NovaFerrum Liquid.  As an adult I take 200mg a day, as directed so the dosing sounds similar considering age.  

It sounds like you are planning to keep a close eye on levels and continue testing to rule out any other underlying reason for the low level, which is necessary, as it’s a “rule out everything else so this must be it” type of a diagnosis.  As I mentioned they recently changed the recommended hemoglobin level for transfusion in a stable patient, so one could argue both sides of IV treatment and there are risks to consider.  

You can keep an eye on the coloring under her eyelids and the lines of her hands, they should start to darken as her levels rise.  Over time they are good indicators to monitor yourself and to teach her to monitor. I laugh because the first thing my hemotologist does is ask to see my hands. 🙂. I hope your DD feels better quickly!

Edited by melmichigan
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I agree that there are risks to infusions, and she probably doesn't need one. And I get that by looking at MCV and a reticulocyte count (assuming they did one) you can pretty much guess if this is a blood loss thing versus a lack of iron. BUT...there is no way to tell WHY she doesn't have enough iron without doing further testing. Sure, it is possible that she just never eats anything that is iron fortified ever but before shrugging and blaming diet they NEED to check for reasons she isn't absorbing her iron. I'm hoping they already checked B12 levels to rule out pernicious anemia, but a celiac blood test is something I'd be very firm on, given the genetics involved and the absurdly low iron.  Usually you don't see levels that low without another cause, even something simple like a daily reflux medication blocking absorption. But seriously, I was vegetarian for over a decade, and HATED veggies, and disliked pretty much all legumes, and never got that low. Not even when pregnant. It's odd enough that you need to check for an underlying cause. Anemia on it's own is a reason to run celiac bloodwork. 

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7 hours ago, Attolia said:

 

 

I didn't pick up the script at CVS, instead I went to Vitamin Shoppe and got a amino acid/chelated mixed.  

This is what I purchased 

https://www.amazon.com/Natures-Plus-Hemaplex-Vegetarian-Supplement/dp/B00014EFFQ?th=1

I don't know anything about this stuff, but  . . . you feel comfortable giving her an OTC product instead of a prescription? If she were my child I would not. Medical professionals know how she should react to the prescription because they can feel reasonably certain what's supposed to be in the prescription is in there. I suspect most have no idea how she should react to the OTC supplement. They'd have no way of knowing whether or not it even contains what it's supposed to (tests have shown that the overwhelming majority don't). This worries me, in that unless she responds well it will almost certainly complicate her treatment.. If her levels don't improve the NP very well may insist you get the prescription and try it. Which will mean a longer time for your DD not feeling well, and a further delay in diagnosing any other underlying cause(s).

I'm also totally baffled that a NP and doctor could say they've never seen numbers that low and don't know how she waked in there, and yet . . . send her home with a prescription. That doesn't make sense to me.

I'm sorry, I know you're probably feeling bombarded with comments and suggestions even though none of us are there, none of us talked with the NP, etc. I'm sure none of us means to pester you. We're just that concerned about such low numbers.

Edited by Pawz4me
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9 hours ago, mominco said:

My DD's levels were higher than your DD's and they were aggressive in the treatment.They made us go to the hospital ER and got her admitted,Full work up and transfusion later they came up with an initial diagnosis of Crohns.

The next day was the scope which confirmed it.I am really shocked they sent her home and not the hospital.The iron supplements took a while to fix the deficiency.I'd still keep the cardiologist appointment.There might be an underlying cause to all this.Please don't ignore what all the others have said up thread.

 

Having a Crohn's kid who's struggles with iron levels, I think this is where it is different.  For kids like your DD and my DS, they can't absorb the iron at a rate fast enough to help without an infusion.  He has teetered on the edge of infusion so many times.  They are working under the assumption that DD's intestines will absorb the iron.  She has no diarrhea or not crohns-like symptoms. 

10 hours ago, melmichigan said:

Has she had a recent growth spurt, does she have long or heavy menstual periods?  There are reasons doctors become concerned when young girls are vegetarians.  If it has been left unaddressed for years, it most certainly can be simply from poor diet and lack of supplements.  I have a 16 year old vegetarian!  We monitor supplements carefully and check blood work every six months at a minimum.  I screen my child myself for anemia on a weekly basis because I have had chronic anemia from the time I was an adolescent.  When low I take 200mg of elemental iron a day.  We are both followed by hemotologist and cardiologist, among many other specialist, but everything else that would cause anemia has been ruled out, and both of us respond to oral iron, as long as it isn’t salts.

 

I wanted to wrap back around to this and say thanks for listing an amount.  The ones I bought were 85 mg and I was thinking twice a day for a while but I was hesitant and if you were taking 200 then she should be fine.

1 hour ago, Pawz4me said:

I don't know anything about this stuff, but  . . . you feel comfortable giving her an OTC product instead of a prescription? If she were my child I would not. Medical professionals know how she should react to the prescription because they can feel reasonably certain what's supposed to be in the prescription is in there. I suspect most have no idea how she should react to the OTC supplement. They'd have no way of knowing whether or not it even contains what it's supposed to (tests have shown that the overwhelming majority don't). This worries me, in that unless she responds well it will almost certainly complicate her treatment.. If her levels don't improve the NP very well may insist you get the prescription and try it. Which will mean a longer time for your DD not feeling well, and a further delay in diagnosing any other underlying cause(s).

I'm also totally baffled that a NP and doctor could say they've never seen numbers that low and don't know how she waked in there, and yet . . . send her home with a prescription. That doesn't make sense to me.

I'm sorry, I know you're probably feeling bombarded with comments and suggestions even though none of us are there, none of us talked with the NP, etc. I'm sure none of us means to pester you. We're just that concerned about such low numbers.

 

Absolutely I do!  This is an area where pharmaceuticals is messed up.  Having a Crohn's kid who struggles with anemia, but somehow embarrassingly missing it with dd, what they prescribe is just awful.  It wreaks havoc with your stomach and it doesn't really work as good as a chelated iron.  He tried it, his stomach was so much worse, and his levels didn't budge.  I put him on a more natural alternative and it did wonders.  I don't know how they miss it so terrible at the pharmacy.

8 hours ago, Ktgrok said:

I agree that there are risks to infusions, and she probably doesn't need one. And I get that by looking at MCV and a reticulocyte count (assuming they did one) you can pretty much guess if this is a blood loss thing versus a lack of iron. BUT...there is no way to tell WHY she doesn't have enough iron without doing further testing. Sure, it is possible that she just never eats anything that is iron fortified ever but before shrugging and blaming diet they NEED to check for reasons she isn't absorbing her iron. I'm hoping they already checked B12 levels to rule out pernicious anemia, but a celiac blood test is something I'd be very firm on, given the genetics involved and the absurdly low iron.  Usually you don't see levels that low without another cause, even something simple like a daily reflux medication blocking absorption. But seriously, I was vegetarian for over a decade, and HATED veggies, and disliked pretty much all legumes, and never got that low. Not even when pregnant. It's odd enough that you need to check for an underlying cause. Anemia on it's own is a reason to run celiac bloodwork. 

 

11 hours ago, Tanaqui said:

It is not 100% accurate that you don't get iron from veggies (though it isn't nearly as bioavailable as the iron in animal products)... but it is certainly true that with the amount of fortification in everything that she shouldn't be that low just from not eating her greens.

Please go back to the doctor or straight to the ER and insist on a transfusion. Sit there and yell and fuss and throw a stinking huge fit until they give her one, or at least prove that there's a damn good reason she shouldn't have one.

 

A friend of ours is a doctor at the same location.  DD doesn't like seeing him because we know him and she prefers a woman. He is a fantastic Dr.  He texted me last night because the NP alerted him.  I bombarded him with questions this morning.  He says he is following her closely and looking into what he would suggest for more testing, etc. I don't like to bother him with medical questions.  I am so glad he texted me last night, haha.  He opened the door and I am taking this chance to ask away.

Edited by Attolia
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15 hours ago, 5lilpumpkins said:

 

Yes, he is very thin, always in the 5% for weight. He has been growing steadily. He remains pretty thin and has long muscles. Low on stamina but high in edurance-meaning he may not be a sprinter but he definitely could run forever.

No eye issues.

Ok, we brought up our 14yo ds feet at more than one of his well-checks when he was 5 6 and 7, each time we were told his were a natural variation of normal for his age and his feet would position correctly as he grew because he seemed to walk on the insides of his feet and ankles appeared to be rotated inward. I had read and was assured it was developmentally normal. I just checked his feet again and they do appear physiologically normal.

We have a Children's Mercy within 45 min of us and we will be asking for a referral if he appears to have the traits. Heading to the link now.

Thank you very much kbutton.

Feel free to PM me if anything else comes up--this all sounds familiar, and my son's systemic score was borderline. Family history of related but different disorders got us in the door. After diagnosis, the ped kept checking him out, like, "What did I miss?" And FWIW, I hope you have a budding marathon runner instead. 🙂 

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11 hours ago, Attolia said:

No, I suppose the cardiologist may choose something like that?  The NP thinks that her problems are 100% iron deficiency and not cardiac but she wants her to see the Dr to make sure.

A regular doctor can do it too.  Mine did for me.  That way you get some answers sooner than whenever the cardiologist has an opening.

Also, there was a time in my life that I lost half of my blood volume, and once the volume was corrected with fluid, I had symptoms much like you describe.  Once I had a blood transfusion, the symptoms completely reversed.  I could feel it happening during the infusion. 

Edited by EKS
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1 hour ago, Attolia said:

So our doctor friend responded with “iron infusion is not ‘a thing’”. She just needs iron supplements. This is completely a diet issue.

How do they KNOW it is "just" a diet issue? I mean, 24 hours ago all the doctors were convinced she was perfectly fine and it was "just" anxiety!!!! They only found out it wasn't "just" that with the tests you pushed! If they don't do the tests to check for celiac, at bare minimum, and B12 (I'm REALLY hoping they already ran that one, please let us know!) then they will never know if it is "just" diet. Or at least they won't know until a month from now when they recheck her levels to see if they came up. Checking B12, celiac, and a reticulocyte count (also REALLY hoping that one was run - it show if you are making red blood cells faster than normal and therefore indicates bleeding or losing blood versus just not making enough blood cells ) is totally non invasive, has zero risk, is not that expensive, and will give important information. (my 6 year old was diagnosed with anemia no where NEAR that serious, and has probably a worse diet as admitted by me, and we STILL ran those tests because that is what is indicated in those situations medically). 

I am not with those pushing an infusion unless she is not functional, save that for if she really isn't functional. And I agree with you that the prescription iron sucks (most prescription vitamins do - even my son's pediatrician advised us to use over the counter versus prescription for that reason). But a simple blood test will rule out celiac and a B12 deficiency and bleeding. It sounds like maybe they did check reticulocytes and that is why they think it is a deficiency, versus bleeding, but you still need to find out if she's eating iron but can't absorb it versus not eating it at all. And given how many foods are fortified (seriously, check the food she normally eats, even bread is often fortified with it, and snack foods, etc) it is really hard to get THAT low without an absorption issue. Maybe it happened, but it's rare enough that checking for celiac and such makes medical sense, just like checking for anemia rather than assuming anxiety makes sense. 

Seriously, push for a celiac test as hard as you pushed for the anemia testing. For the same reasons. And if that is negative, and the anemia doesn't clear up, push to see a hematologist and/or GI specialist. Probably both. 

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30 minutes ago, Ktgrok said:

How do they KNOW it is "just" a diet issue? I mean, 24 hours ago all the doctors were convinced she was perfectly fine and it was "just" anxiety!!!! They only found out it wasn't "just" that with the tests you pushed! If they don't do the tests to check for celiac, at bare minimum, and B12 (I'm REALLY hoping they already ran that one, please let us know!) then they will never know if it is "just" diet. Or at least they won't know until a month from now when they recheck her levels to see if they came up. Checking B12, celiac, and a reticulocyte count (also REALLY hoping that one was run - it show if you are making red blood cells faster than normal and therefore indicates bleeding or losing blood versus just not making enough blood cells ) is totally non invasive, has zero risk, is not that expensive, and will give important information. (my 6 year old was diagnosed with anemia no where NEAR that serious, and has probably a worse diet as admitted by me, and we STILL ran those tests because that is what is indicated in those situations medically). 

I am not with those pushing an infusion unless she is not functional, save that for if she really isn't functional. And I agree with you that the prescription iron sucks (most prescription vitamins do - even my son's pediatrician advised us to use over the counter versus prescription for that reason). But a simple blood test will rule out celiac and a B12 deficiency and bleeding. It sounds like maybe they did check reticulocytes and that is why they think it is a deficiency, versus bleeding, but you still need to find out if she's eating iron but can't absorb it versus not eating it at all. And given how many foods are fortified (seriously, check the food she normally eats, even bread is often fortified with it, and snack foods, etc) it is really hard to get THAT low without an absorption issue. Maybe it happened, but it's rare enough that checking for celiac and such makes medical sense, just like checking for anemia rather than assuming anxiety makes sense. 

Seriously, push for a celiac test as hard as you pushed for the anemia testing. For the same reasons. And if that is negative, and the anemia doesn't clear up, push to see a hematologist and/or GI specialist. Probably both. 

 

I think they feel so confident it is diet because her blood is iron depleted but her other numbers are good.  I do know they checked reticulocyte.  I remember that.  She also did a few other tests and I am sorry that I can't remember, it came so fast at me on the phone.  I will get a copy of the report on Monday and report back. My Crohn's kid wouldn't have had a CBC that was normal other than hemoglobin and serum iron/ferritin.  His numbers are all "off", every single one of them, and all the time.  I think because the rest of her labs were good, they are assuming this is simply a lack of iron. NP did tell her to pay special attention to her stools for red or dark stools/parts. 

They are retesting in a month and I am going to request the celiac test and a B12 if they aren't already doing it.  If those test come back abnormal, NP said she was directly scheduling her with hematology.  She isn't waiting beyond the month.  She seems to be taking it seriously and concerned but she honestly thinks she just needs lots and lots of iron.  

I am definitely concerned as to how we got this low.  I do not think that her diet is THAT iron deficient.  I think there might be an underlying cause for sure, but I feel like it isn't something so severe she can't wait one month?  Maybe I am wrong?   They checked what they needed for internal bleeding and it was good.  I am so very thankful for all of the concern.  I am concerned, the NP is concerned, but I think we all just want to see what her body does with a full month of high doses of iron and go from there.  I will request a celiac test.  They are pulling blood anyway, so why not?  It is a cousin to Crohns and having a sibling with Crohns makes her 40% more likely to have either Crohns, celiacs, or UC at some point.  

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36 minutes ago, EKS said:

A regular doctor can do it too.  Mine did for me.  That way you get some answers sooner than whenever the cardiologist has an opening.

Also, there was a time in my life that I lost half of my blood volume, and once the volume was corrected with fluid, I had symptoms much like you describe.  Once I had a blood transfusion, the symptoms completely reversed.  I could feel it happening during the infusion. 

 

The NP doesn't even feel like her heart is an issue at all, she feels like this is 100% anemia so she didn't even really deal with the chest pain and racing heart.  She does still want her to see cardiology because she said once that is questioned, we need to go ahead and clear it so we can all move on and know that it isn't a factor.

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3 hours ago, Attolia said:

So our doctor friend responded with “iron infusion is not ‘a thing’”. She just needs iron supplements. This is completely a diet issue.

Coming back to dosing.  The iron dosing sounds right but you may wish to check with your physician friend on the product you bought, just because it has extra vitamins involved and everyone is different. I am only allowed to take ~ 800mcg of Folate and 600mcg of vitamin b12 a day (methyl products), which is roughly two Ferrasorb a day (iron bisglycinate).  The bottle says may take three a day, but my hematologist said no.  Of the 200mg, 125mg is polysaccharide iron, so just elemental iron without supplements  I take one Ferrasorb with 1/2 the iron so I have the folate, and b12.  

I agree with calling and asking about running a b12 and folate on the blood already drawn if it wasn’t done.  You are going to supplement them, so the numbers won’t be accurate later on.  It should be a simple request to the lab on their part to add it.

Edited by melmichigan
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I'll add that when they run the celiac panel next month, having them pull B-spectrum testing (B12, folate, etc.) and a D level makes sense. I'd ask for those as well.  These are all part of my regular testing with rheumatology, so this isn't out of the realm of normal checkups if you already know of one abnormality. 

I'll add that having lived in different regions in the US, standard operating procedures for bloodwork very greatly.  Looking back retrospectively, some physician groups are just poorly trained in certain areas. It makes sense that most general physicians and NPs aren't deep in the details of what ideal for functioning labs look like v. ok by the lab parameters. You can have lab levels that look "ok" but leaving you feeling like you're barely in the land of the living.

I'm a bit worried that your doctor friends said that iron infusion isn't a thing. It actually very much is in certain spheres of the medical world. I'm going to link this here from the Cleveland Clinic just so you can read up on it and be aware. https://my.clevelandclinic.org/health/treatments/14571-intravenous-iron-supplementation  It's true that her levels can come up quickly if she has no underlying issues. I wish you all the best!

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Does your daughter have any easy identification with emergency contact number if she faints while outside by herself? If she doesn’t get dizzy spells with her anemia then that’s less scary when out and about. 

ETA:

I kept my home bathroom door unlocked in case of fainting while inside. Easier for my husband to come in and help if I felt dizzy than for me to go to the door and unlock it.

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1 hour ago, 5lilpumpkins said:

Thank you! I looked through everything in the link-he may be borderline-maybe? He does have an aunt on his Dad's side with Ehlers-Danlos-I really think the Gma has a form as well. She will never get tested for it though, just as she is in denial about her ADD, which also runs in thier family. There is definite hypermobility in at least one of our kiddos. I tried the physical tests and they were not really present for our ds but maybe the feet? They look pretty normal these days.

Yes to a distance runner. Just like his Mama!

I am going to be looking at POTS and MARFAN all of it. I just know how awful it was for their aunt to not be believed about her joint pain or ADD. She was not diagnosed with either ED or ADD until in her late 30s for ADD and early 40s for ED.

Nearly all of the connective tissue diseases have at least one manifestation that presents with what they call a Marfanoid habitus--that skinny, lanky build, even when Marfan is not present. I am glad you're going to look into it though! 

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5 hours ago, Attolia said:

 

The NP doesn't even feel like her heart is an issue at all, she feels like this is 100% anemia so she didn't even really deal with the chest pain and racing heart.  She does still want her to see cardiology because she said once that is questioned, we need to go ahead and clear it so we can all move on and know that it isn't a factor.

Looks like you are on the right track!

You know what I just realized?You and I had a convo about our kids in 2015,remember the ensure convo?You had a different name then!My DD and I took your advice esp when she gets a flare! GL hope DD feels better soon!

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I guess what I'm wondering is why wait a month to test for celiac? The blood tests they already ran will rule out bleeding, but the diagnosis of iron deficiency doesn't tell you WHY she's deficient. A month of more damage if she is celiac, a month of levels not improving if she can't absorb iron, etc....why wait?

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3 hours ago, Ktgrok said:

I guess what I'm wondering is why wait a month to test for celiac? The blood tests they already ran will rule out bleeding, but the diagnosis of iron deficiency doesn't tell you WHY she's deficient. A month of more damage if she is celiac, a month of levels not improving if she can't absorb iron, etc....why wait?

 

 Can they do that? Test on blood they’ve already drawn?  I guess I always assumed they dispose of it ASAP?  Also, we are a GF family. DD is not GF per se but she doesn’t get it consistently since I never cook anything with it. My plan was to have her eat at least some each day until her next draw. I’ll just make sure she eats some crackers or a slice of toast each day?

ETA - with her normal diet I sometimes buy her some real sourdough bread and she sometimes eats crackers or cheez it’s. She probably has a serving of gluten 3-4 times or less in a standard week.

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2 hours ago, Attolia said:

 

 Can they do that? Test on blood they’ve already drawn?  I guess I always assumed they dispose of it ASAP?  Also, we are a GF family. DD is not GF per se but she doesn’t get it consistently since I never cook anything with it. My plan was to have her eat at least some each day until her next draw. I’ll just make sure she eats some crackers or a slice of toast each day?

ETA - with her normal diet I sometimes buy her some real sourdough bread and she sometimes eats crackers or cheez it’s. She probably has a serving of gluten 3-4 times or less in a standard week.

Often times if the doctor calls soon enough they can add tests. They do keep it for a little while. Not long though. And they have to have it if Blood already. But if she’s not eating gluten it probably wouldn’t be accurate.

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5 minutes ago, Ktgrok said:

Also, if she isn’t eating gluten, and she isn’t eating vegetables, and she isn’t eating beans, and she isn’t eating meat, and she isn’t eating dairy, what is she eating? Fruit and potatoes?

 

I am wondering the same thing. 

 

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1 hour ago, PeterPan said:

Are they going to get her some nutrition counseling? She might need some guidance on how to eat for her issues and keep that iron up.

 

Check with your insurance company. Ours has the service where you can call and speak to various experts to work on exercise plans, nutrition plans, and so on. 

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19 hours ago, Ktgrok said:

Also, if she isn’t eating gluten, and she isn’t eating vegetables, and she isn’t eating beans, and she isn’t eating meat, and she isn’t eating dairy, what is she eating? Fruit and potatoes?

 

19 hours ago, Pen said:

 

I am wondering the same thing. 

 

 

 

Oh no, she loves beans.  Lots of beans 😉 She eats some gluten but not daily.  She likes eggs for breakfast or oatmeal.  She eats granola bars that aren't sugary ( in fact I noticed today that each bar is 9% of her daily iron and she eats at least 2 per day), she eats beans or soup for lunch, for dinner usually potatoes, gf pasta, or rice with some veggies (I either make her or it is a veggie she actually does like).  She eats some real cheese but not other dairy.  She will eat fish on a rare occasion but no other meat.  I have talked her into upping the fish intake.  Writing it out makes me wonder how it is diet, really?  She has a healthy appetite.

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1 minute ago, Attolia said:

 

 

 

Oh no, she loves beans.  Lots of beans 😉 She eats some gluten but not daily.  She likes eggs for breakfast or oatmeal.  She eats granola bars that aren't sugary ( in fact I noticed today that each bar is 9% of her daily iron and she eats at least 2 per day), she eats beans or soup for lunch, for dinner usually potatoes, gf pasta, or rice with some veggies (I either make her or it is a veggie she actually does like).  She eats some real cheese but not other dairy.  She will eat fish on a rare occasion but no other meat.  I have talked her into upping the fish intake.  Writing it out makes me wonder how it is diet, really?  She has a healthy appetite.

Beans are high in iron (for a vegetarian anyway), plus she's getting 18 percent or more of her iron in those granola bars, so yeah....sounds like dinner might sometimes be low on protein but that's it. Again, I'm thinking absorption issue, not intake issue. 

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Is she eating fruit? Fruit has enzymes to build her digestion. So when she's saying she doesn't feel well after eating certain meats or foods, that would be a big sign to look at fruit. The nutritionist I used puts people on 2-4 cups of fruit, divided across the day. 

She could put raisins in her oatmeal and have a tablespoon of molasses daily. Do greens like kale and spinach have iron? Check. That way they'd come with the enzymes. 

 

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1 minute ago, Pen said:

Her B12 sources? 

Interestingly, vit D is used in processing that, pulling the methyls off the methylcobalamin. Vitamin D is also a mood stabilizer. Turns out most of us in my family have a vitamin D receptor gene (VDR) defect and need supplementation, go figure.

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Now that you’ve identified the anemia, you might consider celiac testing. My friend’s daughter was severely anemic all through high school. It wasn’t until her early 20’s that she had a full blown celiac crisis and discovered that celiac was the cause of the anemia. She’s suffered a lot of consequences for how long it went unidentified. 

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