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di3004

marshallka wrote: »

My daughter has just been diagnosed "anemic" and been given iron tabs BUT her ferritin levels are normal, its actually her hemoglobin that is low....She has to to see a specialist in December but I cannot understand why they would do this. I emailed the American Society of Blood disorders and got this reply

Dear Karen,
Thank you for contacting the American Society for Clinical Laboratory
Science (ASCLS). You are correct that a person does not need iron if ferritin levels are normal. ferritin is the storage form of iron. Because of the nose bleed and petechiae, I am thinking of a hemostasis problem. This may or may not be related to the low hemoglobin. I would ask that she be screened for basic coag tests, PT, PTT, Fibrinogen and also have a platelet function test done (whether bleeding time or other). A condition that is often overlooked in women is vonWillebrand''s disease. Some testing should help rule this out.

Again, thank you for using the ASCLS Consumer Information Web Page. As a
member of this profession, I am pleased to represent clinical laboratory
scientists who perform millions of laboratory tests yearly. The clinical
laboratory is composed of several sub-specialty areas: Chemistry,
Hematology, Immunology, Microbiology, and Transfusion services and
provides over 70% of the objective data that physicians need for
accurate diagnosis and treatment.

Jeanne Isabel, MSEd, CLSpH(NCA)
ASCLS Consumer Information Team


Also it says here

Hemoglobin is not iron! Unfortunately physicians prescribe iron to anemic people who test with low hemoglobin. Yes, the patients are anemic, but the iron is collecting in storage instead of going into hemoglobin. These people are iron-loaded. They need iron removed despite the anemia. The anemia should be treated with B vitamins, especially B12, B6 and folic acid. Many patients with anemia are dying of iron overload, and some are hastened to their death by their physicians who give iron. Blood banks seem to believe that hemoglobin and iron are the same. They have prepared lists of high iron foods to give out to donors with low hemoglobin. They invariably tell these people: "Your iron is low." Dangerous misinformation.



Would you take her off the iron tabs from this information. It was only monday evening she started them and it was friday she was seen at the docs for petechia and first nose bleed. This has been ongoing since she was 3. I don't know how to tell my doctor tomorrow as I am getting a telephone consultation that I have found that they have treated her wrong... I trust the blood specialists more than a general GP

Hi Marshallka

I am so sorry to hear that, bless her, so young as well.

My niece, she is now 16 but when she was 2 had this problem.
And nose bleeds was a bit problem for her as well.

I hope this sorts out, its a big worry when it comes to your own children.
I do not understand how this works myself to be honest, but lets hope something can be sorted out very soon.
Thinking of you and your lovely daughter.

Hope someone can give you some useful advice on this one Marshallka, it must be a very difficult time for you. (I do not see my sister that often, but if I do I will try to find out on this for you), but hopefully someone can get back to you quicker on this XX

Di
XXXXXXXXX

marshallka

di3004 wrote: »

Hi Marshallka

I am so sorry to hear that, bless her, so young as well.

My niece, she is now 16 but when she was 2 had this problem.
And nose bleeds was a bit problem for her as well.

I hope this sorts out, its a big worry when it comes to your own children.
I do not understand how this works myself to be honest, but lets hope something can be sorted out very soon.
Thinking of you and your lovely daughter.

Hope someone can give you some useful advice on this one Marshallka, it must be a very difficult time for you. (I do not see my sister that often, but if I do I will try to find out on this for you), but hopefully someone can get back to you quicker on this XX

Di
XXXXXXXXX

Di, its been hell just of late with one thing and another. I want to know why they have prescribed iron tabs to my daughter who is anemic BUT not in the iron department as her tests PROVE. Its hard to be able to tell a doc that they are wrong but I KNOW they are IF her ferritin (which is iron) is normal to which I have asked two different people at the surgery about now and BOTH say it is. I want some answers tomorrow and going to hold back on the pils from now.

What did your niece have cause the specialists at our hospital have said they only know of one other person to have what my daughter has and to this day they don't know why. They did say it was her way of ridding a virus to bleed.

maxdp

marshallka wrote: »

My daughter has just been diagnosed "anemic" and been given iron tabs BUT her ferritin levels are normal, its actually her hemoglobin that is low....She has to to see a specialist in December but I cannot understand why they would do this. I emailed the American Society of Blood disorders and got this reply

Dear Karen,
Thank you for contacting the American Society for Clinical Laboratory
Science (ASCLS). You are correct that a person does not need iron if ferritin levels are normal. ferritin is the storage form of iron. Because of the nose bleed and petechiae, I am thinking of a hemostasis problem. This may or may not be related to the low hemoglobin. I would ask that she be screened for basic coag tests, PT, PTT, Fibrinogen and also have a platelet function test done (whether bleeding time or other). A condition that is often overlooked in women is vonWillebrand''s disease. Some testing should help rule this out.

Again, thank you for using the ASCLS Consumer Information Web Page. As a
member of this profession, I am pleased to represent clinical laboratory
scientists who perform millions of laboratory tests yearly. The clinical
laboratory is composed of several sub-specialty areas: Chemistry,
Hematology, Immunology, Microbiology, and Transfusion services and
provides over 70% of the objective data that physicians need for
accurate diagnosis and treatment.

Jeanne Isabel, MSEd, CLSpH(NCA)
ASCLS Consumer Information Team


Also it says here

Hemoglobin is not iron! Unfortunately physicians prescribe iron to anemic people who test with low hemoglobin. Yes, the patients are anemic, but the iron is collecting in storage instead of going into hemoglobin. These people are iron-loaded. They need iron removed despite the anemia. The anemia should be treated with B vitamins, especially B12, B6 and folic acid. Many patients with anemia are dying of iron overload, and some are hastened to their death by their physicians who give iron. Blood banks seem to believe that hemoglobin and iron are the same. They have prepared lists of high iron foods to give out to donors with low hemoglobin. They invariably tell these people: "Your iron is low." Dangerous misinformation.



Would you take her off the iron tabs from this information. It was only monday evening she started them and it was friday she was seen at the docs for petechia and first nose bleed. This has been ongoing since she was 3. I don't know how to tell my doctor tomorrow as I am getting a telephone consultation that I have found that they have treated her wrong... I trust the blood specialists more than a general GP

Just found this too.

The other thing to note is that hemoglobin is not iron! Yes, you are anemic if your hemoglobin is low but that does not necessarily mean your iron is low. Indeed, what might be happening is that the iron is collecting in storage instead of going into hemoglobin. You are actually iron-loaded and need iron removed despite the anemia. The anemia should be treated with B vitamins, especially B12, B6 and folic acid. Many patients with anemia are dying of iron overload, and some are hastened to their death by their physicians who give them more iron.

Even a small amount of excess iron can damage heart and brain and other storage sites in the body and lead to heart attack or stroke. There is exaggerated concern when hemoglobin falls temporarily, following surgery, for example. Blood transfusions are over-used. A study shows that surgery patients who do not receive transfusions survive better than those who do.1

Sorry to hear above Marshallka. Good for you for researching it. She is your daughter and if they are barking up the wrong tree you have to tell them. I know it is difficult but am sure you will do this. You could also ask for a second opinion. Has she seen a specialist at all.

di3004

marshallka wrote: »

Di, its been hell just of late with one thing and another. I want to know why they have prescribed iron tabs to my daughter who is anemic BUT not in the iron department as her tests PROVE. Its hard to be able to tell a doc that they are wrong but I KNOW they are IF her ferritin (which is iron) is normal to which I have asked two different people at the surgery about now and BOTH say it is. I want some answers tomorrow and going to hold back on the pils from now.

What did your niece have cause the specialists at our hospital have said they only know of one other person to have what my daughter has and to this day they don't know why. They did say it was her way of ridding a virus to bleed.

I am not sure Marshallka I will try to find out, as its some years ago.
It all started down to regular nose bleeds she was having daily, but as her dad had Leukemia, this was the main reason of why they checked this out.
However, I don't think it was a rare type and she is now okay.

I do hope you come to the bottom of this Marshallka, I am unable to get in touch with my sister at this time, but am hoping to hear from her at some point, but you need your answers on this now.
What about the helpline within the NHS?
Just a thought, but obviously its a worrying time for you.

I know you have researched on this, but came across some info:
http://www.about-blood-disorders.com/articles/iron-disorders/types-of-anemia/index.php

pinknico

Go with your instinct Marshallka and don't give up until you are happy with the answers and they have done the other tests suggested.
Best wishes to your daughter.xx

marshallka

maxdp wrote: »

Sorry to hear above Marshallka. Good for you for researching it. She is your daughter and if they are barking up the wrong tree you have to tell them. I know it is difficult but am sure you will do this. You could also ask for a second opinion. Has she seen a specialist at all.

Going on 22nd December. I know she is anemic and that is for sure BUT she is not iron deficient. I have researched some more and i would say that its b12 which my sis has again. She was sent to hemotology in 2005 for this problem. Enlarged red cells and now she has lost 2 stone in two months and has even larger red cells and her b12 is down and all others are raised, she is going back to hemotolgy. I really need someone to listen to me now as it could answer my daughters, mine and my sissies probs but how do I get someone to listen. I have my daughters levels and also my own since last attending. They have put me down as having thrombocytosis and high white cells etc etc etc but been discharged until ill again. I have just seen this condition called Pernicious Anemia and wondered about my daughter and sister. My sis is worrying me too. In fact everything is worrying me at the moment.

marshallka

di3004 wrote: »

I am not sure Marshallka I will try to find out, as its some years ago.
It all started down to regular nose bleeds she was having daily, but as her dad had Leukemia, this was the main reason of why they checked this out.
However, I don't think it was a rare type and she is now okay.

I do hope you come to the bottom of this Marshallka, I am unable to get in touch with my sister at this time, but am hoping to hear from her at some point, but you need your answers on this now.
What about the helpline within the NHS?
Just a thought, but obviously its a worrying time for you.

I know you have researched on this, but came across some info:
http://www.about-blood-disorders.com/articles/iron-disorders/types-of-anemia/index.php

Di, Luekemia is what worries me TBH. I have had a test for a Polycythemia Vera but JAK2 negative but still could have essential thrombocythemia which is a Myeloproliferative disorder. I have got a diagnosis at the moment for thrombocytosis but nothing else. I wondered if we all had something now.....

di3004

marshallka wrote: »

Di, Luekemia is what worries me TBH. I have had a test for a Polycythemia Vera but JAK2 negative but still could have essential thrombocythemia which is a Myeloproliferative disorder. I have got a diagnosis at the moment for thrombocytosis but nothing else. I wondered if we all had something now.....

I have just left a message on my sister's answer phone Marshallka, she is at work and am hoping she will get back to me as soon as she comes home.
To be honest all this confuses me, and hope you get to the bottom of it, and of course its bound to worry you, this is understandable.

marshallka

Yeah I know Di. I am sorry for all this.. I really need a doctor don't I.... Just spouting off really cause I am worried...:o:o No-one but a doc can help I suppose but just wanted to write down about the iron tabs and how my daughter can be deficient in iron when her iron levels are fine. That I stand by in taking her off the meds.. I get my telephone consultation tomorrow and I bet they will be annoyed that I actually looked it up. I know I am right though and it was confirmed by the american blood society. She does not need meds if she is not low iron and it can be damaging. She is anemic but its not iron.

di3004

marshallka wrote: »

Yeah I know Di. I am sorry for all this.. I really need a doctor don't I.... Just spouting off really cause I am worried...:o:o No-one but a doc can help I suppose but just wanted to write down about the iron tabs and how my daughter can be deficient in iron when her iron levels are fine. That I stand by in taking her off the meds.. I get my telephone consultation tomorrow and I bet they will be annoyed that I actually looked it up. I know I am right though and it was confirmed by the american blood society. She does not need meds if she is not low iron and it can be damaging. She is anemic but its not iron.

Hi Marshallka
Do not be sorry for this, its not your fault, I would be the same as you in this situation.
Its only natural that your concerned/worried and upset by all this.
I could not cope myself to be honest, but I do hope something is sorted tomorrow your only doing what any loving mother would do.
She is your daughter and your bound to be all over the place right now.
I pray this is all sorted for you Marshallka, to ease your mind here.;):AXXXXX