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    Old 02-04-2009, 05:52 AM   #1
    herekittykitty
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    Ferritin 2; Doctor will not test B12

    I am new to this board and trying to find answers. I have many symptoms of anemia and have had blood work done that proves I am anemic. Here are some of my levels:

    Ferritin: 2
    Hemoglobin: 9.5 (Low)
    Hematocrit: 30.5 (Low)
    MCV: 68 (Low)
    MCH: 21.2 (Low)
    MCHC: 31.2 (Low)
    RDW: 17.7 (High)

    I also had high Thyroid Antibodies (but with normal thyroid levels otherwise), and borderline ANA (autoimmune antibodies) and low Vit. D.

    I have extremely heavy periods (fibroids) and am in the process of getting my hormone levels checked.

    Here is my question:

    I have two relatives with pernicious anemia (my grandfather and uncle) as well as various autoimmune diseases in my family (MS, myasthenia gravis, celiac, Hashimoto's).

    My doctor started me on Vit. D, B12 1000 mcg., folate 1000 mcg., and ferrous sulfate 125 mg. twice a day. I wanted a baseline blood test on my B12 levels before I started on the B12 and folate, but she says just start on it and we will test my levels after a month and see if my hemoglobin and ferritin levels come up.

    I read that taking folate will mask Pernicious Anemia and am worried that this will happen with me as I already have some problems associated with this such as numb arms and hands, eyelid that twitches 24 hours a day, swollen eyelids, brain fog, tiredness, shortness of breath, heart palpitations, heart murmur, etc.

    Should I just take the iron supplements and B12 and not take the folic acid until after I get the additional blood work completed?

     
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    Old 02-04-2009, 06:51 AM   #2
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    Re: Ferritin 2; Doctor will not test B12

    Ive learned over the yrs to do what feels right to you personally im with you. I wouldnt take it until you have the blood test.

     
    Old 02-04-2009, 07:21 AM   #3
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    Re: Ferritin 2; Doctor will not test B12

    Hi HKK,

    First of all welcome to the boards. Your question is a very interesting one, but I want to address one thing before I begin. In today's world with information being available at anyone's fingertips who has the internet, a lot of medical information goes around to people and unfortunately in many ways it's out of context. As a result, tension arises between doctor and patient mostly because doctors are horrible communicators--even if they are right about something! I'm not totally siding with your doctor, but if you look at the values you gave for your bloodwork, and you have some medical training, it's easy to see that vitamin B12 deficiency is not your problem.

    Whenever someone has anemia, it is important to ask WHY. In your case, your anemia is almost certainly due to iron deficiency. Again, however, the question has to be asked, WHY do you have iron deficiency anemia? As a young woman with heavy periods, that is a good explanation to the underlying cause. Iron deficiency anemia is characterized, yes, by anemia, and evidence of low iron stores (i.e. a ferritin of <18), but there are other markers in your bloodwork which highly suggest longstanding iron deficiency. Your MCV or mean corpuscular volume (i.e. the average size of your red blood cells) is very low. Normal is between 79-97. Because your RBCs don't have enough iron to make hemoglobin, they end up becoming smaller. Additionally, your RDW is wide. What that means is that there is great variability between the sizes of your red blood cells. This suggests that rather than there being a DNA problem with your cells (i.e. in something like thalassemia) there is more of a problem in the blood getting iron. Some cells are able to get more iron than others and are thus bigger.

    So what the heck does this have to do with Vitamin B12? Well, in vitamin B12 deficiency your MCV is normally LARGE. On average, people with Vitamin B12 deficiency have MCVs which are over 100. If you had BOTH iron deficiency and Vitamin B12 deficiency, your MCV would probably be in the "normal" range because the small RBC effect of the iron deficiency would "cancel out" the large RBC effect of Vit B12 deficiency.

    Now on to your symptoms. I understand that your family has pernicious anemia, and yes, this does somewhat increase your risk for getting it; however, I would stop short of saying anything else. One common misconception by patients is that, if they list their symptoms to a doctor, s/he will be able to immediately tell you what disease you have. There is the idea of "specificity" of symptoms. To elucidate further, if someone walks in to the doctor's office complaining of a cough productive of green phlegm and a fever, well, that is pretty SPECIFIC for pneumonia. HOWEVER, most symptoms patients experience are very NON-specific. "Numb hands", "brain fog", "palpitations" (etc.) together do not point towards any one diagnosis at all. They are all very non-specific. This is why when people go to the doctor, it seems like the doctor isn't listening. What the patient thinks are important symptoms are rarely helpful in making a diagnosis. The doctor, however, DOES know the important symptoms, so s/he will often brush the patient's complaints off and ask specific questions. Unfortuantely, if the doctor is not a good communicator, this leads to tension.

    WHOOOOOOO, that was a long-winded post, but aside from my explanation of anemia, does my explanation of specific vs. non-specific symptoms make sense?

     
    Old 02-04-2009, 02:05 PM   #4
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    Re: Ferritin 2; Doctor will not test B12

    The reason they give you folate with iron is because it helps you to absorb the iron. I do have Hashimoto's and your blood labs are very indicative of Hashimoto's. Ferritin of 2 is terrible and if you aren't having horrible symptoms, I would be surprised. I was at 18 and have never been more miserable in my life. I was prescribed chromagen forte and four months later I am at 53 so much better. My vitamin D was at 11.8 and now after 2,000 iu per day my Vit D levels are still low but improved to 18. So it does sounds as if you have Hashimoto's which alone will mess with you and put you up and down and all over the place until your thyroid finally burns out. So tell your doc about your concerns with the pernicious anemia. I do believe in pernicious anemia the blood cells do look different under the microscope. However with iron deficiency anemia and hashimoto's your blood cells still may not look different, so ask your doctor that as well.
    If you have a doctor who doesn't like questions or request, you simply have a bad doctor. Any time an ego gets in the way, the person is not in the field for the right reasons, so move on if your doctor is that way.

     
    Old 02-04-2009, 02:07 PM   #5
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    Re: Ferritin 2; Doctor will not test B12

    BTW you are considered anemic based on your low hematocrit and hemoglobin. That means you need to get supplements now. Your ferritin is the total iron storage your body has available so when that gets low in conjunction with the low hct and hg, you need to get those numbers up now. I had only low ferritin and the other tests were normal and I was miserable so I can't imagine being in your position right now.

     
    Old 02-05-2009, 05:23 PM   #6
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    Re: Ferritin 2; Doctor will not test B12

    Quote:
    Originally Posted by herekittykitty View Post
    I am new to this board and trying to find answers. I have many symptoms of anemia and have had blood work done that proves I am anemic. Here are some of my levels:

    Ferritin: 2
    Hemoglobin: 9.5 (Low)
    Hematocrit: 30.5 (Low)
    MCV: 68 (Low)
    MCH: 21.2 (Low)
    MCHC: 31.2 (Low)
    RDW: 17.7 (High)

    I also had high Thyroid Antibodies (but with normal thyroid levels otherwise), and borderline ANA (autoimmune antibodies) and low Vit. D.

    I have extremely heavy periods (fibroids) and am in the process of getting my hormone levels checked.

    Here is my question:

    I have two relatives with pernicious anemia (my grandfather and uncle) as well as various autoimmune diseases in my family (MS, myasthenia gravis, celiac, Hashimoto's).

    My doctor started me on Vit. D, B12 1000 mcg., folate 1000 mcg., and ferrous sulfate 125 mg. twice a day. I wanted a baseline blood test on my B12 levels before I started on the B12 and folate, but she says just start on it and we will test my levels after a month and see if my hemoglobin and ferritin levels come up.

    I read that taking folate will mask Pernicious Anemia and am worried that this will happen with me as I already have some problems associated with this such as numb arms and hands, eyelid that twitches 24 hours a day, swollen eyelids, brain fog, tiredness, shortness of breath, heart palpitations, heart murmur, etc.

    Should I just take the iron supplements and B12 and not take the folic acid until after I get the additional blood work completed?
    Hello herekittykitty--I love your name, it makes me want to start calling cats LOL!

    From your labs they do point to iron deficiency anemia, why, is what you want to find out. You are considered moderately anemic almost, mild. Your MCV is not ~just low~ but severely low at 68. And....your are very iron deficient at a 2 ferritin which is considered no iron (under 10), according to my Hematologist.

    I know you were concerned about B-12 deficiency and PA, the other poster was correct in saying, if a B-12 deficiency coexists in the presence of IDA, it may not show and appear to be a normal reading. You are too low for that. That doesn't mean that you are not low in B-12, and you were right, you should have a baseline for B-12. Anytime there is anemia this should be checked. It takes years to deplete the B-12 and you could have something beginning that might only be a little low, but regardless it would show. You could have a B-12 of 400-500 and have symptoms, but be considered normal range. It's just not right in any way (other than you don't appear to have a B-12 deficiency from your docs point of view) that they didn't check it for you. You will have to keep pushing that issue. Don't give up and I promise you will win in the end!! I think that your doctor wants you to take B-12 and folate now because this helps in rebuilding healthy blood cells.

    I too have Hashi's (that is your elevated Thyroid Antibodies), and I am thinking that your ANA is related to that AI disease. It can come up that way I have read. Keep an eye on this, and your symptoms. Keep them written down because you can forget them and it is so helpful to go back and read. Also, keep a record of your labs for your own reference, especially with your history.

    I'm a little late to this post, have you made a decision about taking the folate or not? Best of luck to you. FLFLOWERGIRL

     
    Old 02-05-2009, 06:00 PM   #7
    herekittykitty
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    Re: Ferritin 2; Doctor will not test B12

    I decided not to take the folate. The doctor will probably be aggravated with me, but that's okay.

    I hope, like you said, my ANA levels are up because of the Hashimoto's and not some other autoimmune something going on.

     
    Old 02-06-2009, 07:17 AM   #8
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    Re: Ferritin 2; Doctor will not test B12

    Hi Herekittykitty

    [B]HKK: I see what you mean--I guess it really wouldn't hurt to do a simple test like a B12. The other thing about the symptoms you mention: remember that even though you have family members who have pernicious anemia with B12 deficiency, it STILL doesn't mean your symptoms are from that even if they had them. In fact, unless you have severe B12 deficiency with symptoms of cerebellar and dorsal-column spinal cord degeneration, the rest of the symptoms you describe (except for maybe the numbness in the hands) are not typical.[/B]

    I do not agree with this comment put up for you from another poster your symptoms inc numb hands are symptoms of B12 deficiency it causes sooo many symptoms all taht you mention the only one that doesnt fit is swollen eyelids taht I know of but it is possible as it does affect the eyes in fact it affects every system in our bodies it is a very important vitamin and you dont have to have anemia to have it.....there is a strong link between B12 and thyriod problems

    Good luck if your doc wont test which is just plain silly then see another......Do all the research you can on it and make sure your supplementing with Methylcobalamin the active form pretty much anything else will not bring the repair you are wanting there are also a lot of cofactors involved the B12 that need to be taken as well........To repair damage you will need large doses consistently and it can take many months......

    Last edited by robinegg; 02-06-2009 at 07:19 AM.

     
    Old 02-06-2009, 07:33 AM   #9
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    Re: Ferritin 2; Doctor will not test B12

    Quote:
    Originally Posted by cgranulomatis View Post
    Hi HKK,

    First of all welcome to the boards. Your question is a very interesting one, but I want to address one thing before I begin. In today's world with information being available at anyone's fingertips who has the internet, a lot of medical information goes around to people and unfortunately in many ways it's out of context. As a result, tension arises between doctor and patient mostly because doctors are horrible communicators--even if they are right about something! I'm not totally siding with your doctor, but if you look at the values you gave for your bloodwork, and you have some medical training, it's easy to see that vitamin B12 deficiency is not your problem.

    Whenever someone has anemia, it is important to ask WHY. In your case, your anemia is almost certainly due to iron deficiency. Again, however, the question has to be asked, WHY do you have iron deficiency anemia? As a young woman with heavy periods, that is a good explanation to the underlying cause. Iron deficiency anemia is characterized, yes, by anemia, and evidence of low iron stores (i.e. a ferritin of <18), but there are other markers in your bloodwork which highly suggest longstanding iron deficiency. Your MCV or mean corpuscular volume (i.e. the average size of your red blood cells) is very low. Normal is between 79-97. Because your RBCs don't have enough iron to make hemoglobin, they end up becoming smaller. Additionally, your RDW is wide. What that means is that there is great variability between the sizes of your red blood cells. This suggests that rather than there being a DNA problem with your cells (i.e. in something like thalassemia) there is more of a problem in the blood getting iron. Some cells are able to get more iron than others and are thus bigger.

    So what the heck does this have to do with Vitamin B12? Well, in vitamin B12 deficiency your MCV is normally LARGE. On average, people with Vitamin B12 deficiency have MCVs which are over 100. If you had BOTH iron deficiency and Vitamin B12 deficiency, your MCV would probably be in the "normal" range because the small RBC effect of the iron deficiency would "cancel out" the large RBC effect of Vit B12 deficiency.

    Now on to your symptoms. I understand that your family has pernicious anemia, and yes, this does somewhat increase your risk for getting it; however, I would stop short of saying anything else. One common misconception by patients is that, if they list their symptoms to a doctor, s/he will be able to immediately tell you what disease you have. There is the idea of "specificity" of symptoms. To elucidate further, if someone walks in to the doctor's office complaining of a cough productive of green phlegm and a fever, well, that is pretty SPECIFIC for pneumonia. HOWEVER, most symptoms patients experience are very NON-specific. "Numb hands", "brain fog", "palpitations" (etc.) together do not point towards any one diagnosis at all. They are all very non-specific. This is why when people go to the doctor, it seems like the doctor isn't listening. What the patient thinks are important symptoms are rarely helpful in making a diagnosis. The doctor, however, DOES know the important symptoms, so s/he will often brush the patient's complaints off and ask specific questions. Unfortuantely, if the doctor is not a good communicator, this leads to tension.

    WHOOOOOOO, that was a long-winded post, but aside from my explanation of anemia, does my explanation of specific vs. non-specific symptoms make sense?
    Hi
    Iam sorry but this is incorrect information here you state that B12 deficiency is clearly not her problem......Incorrect there is no B12 or HCY or UMMA results so I dont know how you can say that......
    However if you are talking about PA that is different the blood now changes the cells become large...and the MCV is elevated...You still need to have the B12 checked in any case

    You can have a B12 deficiency or insuffeciency without anemia.....And the symptoms listed are among them....I can list a whole lot of symptoms for your viewing it affects the whole body systems not just the blood it is serious in that it can cause a lot of damage with the correct type of B12 a lot are reversable.............I know as I am B12 deficient and I dont have anemia at all nor was my MCV elevated I had foggy head,numbness, fatigue,palpitations rapid heart rate loss of memory stomach issues concentration problems couldnt talk properly the list goes on and on..........My iron was on the low side as my ferritin but not severe vitamin D very low as was my folate........
    Thyriod conditions are strongly linked with B12 and also celiac disease which can acuse B12, iron vit D and folate deficiencies.........

    Cheers

     
    Old 02-06-2009, 07:52 AM   #10
    herekittykitty
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    Re: Ferritin 2; Doctor will not test B12

    It is methylcobalamin that I am taking and have decided not to take the folate right now. My grandfather that had pernicious anemia went undiagnosed for so long that he did have serious neurological problems that they think were caused from his lack of diagnosis. He even had to be fed because he shook so much that he couldn't hold his own glass or fork. He was only diagnosed when he couldn't get out of the bed one day and he had to be hospitalized and given immunoglobulin IV's and they ran every test in the world on him and finally thought about B12, and bingo, that was it. Unfortunately, a lot of damage had been done. I don't want that to happen to me.

    Last edited by Administrator; 03-22-2009 at 08:49 PM.

     
    Old 02-07-2009, 01:56 PM   #11
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    Re: Ferritin 2; Doctor will not test B12

    I appreciate what you are saying, but when someone has B12 deficiency as a cause of anemia, you don't need a B12 level to be able to rule it out. B12 deficiency has to be severe and longstanding in order to cause the megaloblastic changes and neutrophilic hypersegmentation seen in the complete blood count. If you understand all the different parameters that HKK has included in her bloodwork, it is clear that at least her anemia is not secondary to B12 deficiency.

    You are right, however, you can have neurological symptoms of B12 deficiency in the absence of anemia, but that is relatively uncommon. I appreciate you were having a myriad of symptoms, but again if you read my comments about specificity of different symptoms, all of your symptoms are non-specific. The symptoms you name have just as good a chance of being from any other health condition you have/had, as from the B12 deficiency.

    I agree with you that B12 has a widespread role in the body aside from just the blood, and this is because it is used in a critical step in DNA synthesis. The classic two systems which are affected from B12 deficiency are your hematologic system (generally one gets a megaloblastic anemia) and the nervous system (both the peripheral and central nerves). Other systems are definitely affected, but in a much more non-specific way. Because B12 deficiency will affect areas of the body where there are rapidly growing cells, other things which can happen include: atrophic vaginitis, chronic abdominal pain, nausea, hair loss etc.

    I don't want to trivialize your condition as you obviously have had trouble and were being treated for it, but your case is not representative of the vast majority of people who have severe B12 deficiency from many causes: Crohn's terminal ileitis, Diphyllobothriasis, Short gut syndrome, pernicious anemia, achlohydria etc. etc. A small amount of medical training will allow one to interpret HKK's CBC and see that it is not from B12 deficiency.

    Last edited by Administrator; 03-22-2009 at 08:50 PM.

     
    Old 02-07-2009, 03:38 PM   #12
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    Re: Ferritin 2; Doctor will not test B12

    Quote:
    Originally Posted by cgranulomatis View Post
    .... The symptoms you name have just as good a chance of being from any other health condition you have/had, as from the B12 deficiency....
    .
    Exactly!

    Quote:
    ... but your case is not representative of the vast majority of people who have severe B12 deficiency from many causes: Crohn's terminal ileitis, Diphyllobothriasis, Short gut syndrome, pernicious anemia, achlohydria etc. etc. A small amount of medical training will allow one to interpret HKK's CBC and see that it is not from B12 deficiency.
    Yes, I am in total agreement.

    Last edited by bethsheba; 02-07-2009 at 03:38 PM.

     
    Old 02-07-2009, 03:48 PM   #13
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    Re: Ferritin 2; Doctor will not test B12

    Quote:
    Originally Posted by cgranulomatis View Post
    ... In today's world with information being available at anyone's fingertips who has the internet, a lot of medical information goes around to people and unfortunately in many ways it's out of context. As a result, tension arises between doctor and patient mostly because doctors are horrible communicators--even if they are right about something! I'm not totally siding with your doctor, but if you look at the values you gave for your bloodwork, and you have some medical training, it's easy to see that vitamin B12 deficiency is not your problem.
    Yes, I think this is so very true.

    Quote:
    ...Whenever someone has anemia, it is important to ask WHY. In your case, your anemia is almost certainly due to iron deficiency. Again, however, the question has to be asked, WHY do you have iron deficiency anemia? ...
    It is easy to become myopic and overlook the big picture when we have something concrete, like numbers/labs, to focus on...sometimes when looking at details, we can't see what's staring us right in the face! The numbers mean little if you don't know the answer to the "WHY".

    Your post was much appreciated, cgranulomatis. Thank you.

    Last edited by bethsheba; 02-07-2009 at 03:49 PM.

     
    Old 02-07-2009, 04:56 PM   #14
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    Re: Ferritin 2; Doctor will not test B12

    Quote:
    Originally Posted by herekittykitty View Post
    It is methylcobalamin that I am taking and have decided not to take the folate right now. My grandfather that had pernicious anemia went undiagnosed for so long that he did have serious neurological problems that they think were caused from his lack of diagnosis. He even had to be fed because he shook so much that he couldn't hold his own glass or fork. He was only diagnosed when he couldn't get out of the bed one day and he had to be hospitalized and given immunoglobulin IV's and they ran every test in the world on him and finally thought about B12, and bingo, that was it. Unfortunately, a lot of damage had been done. I don't want that to happen to me.
    Hi herekittykitty
    You certainly have a lot of family history inc hashis,thyriod problems ect
    I can only gtalk about B12 and I feel you should have been tested it very foolish to get you to take supplements first as it skews the tests and of course after 1 month of it your levles will be higher but you never had a base to compare with thats just crazy thing for your doctor to do.........As you have been supplementing iy give an accurate reading 1000mcg a day is not enough to correct neuro damage I gather you are using the subs?
    If yo have not had your folate levels done it is crazy to take folate to.....and to not take it by that I mean if you are low in it and you are taking B12 and not folate it will just pull down folate more you must take them together they are cofactors......
    If you search B12 and methycobalamin you will find all info esp a place called B12 deficiency commonly misdiagnosed.....
    I am really sorry to here about your grandfather and I understand where you are coming from You may also want consider celiac and your ANA need further invetigating may have something t do with Hashis Even though you blood work doesnt not suggest PA doesnt mean you dont have a b12 thing going on...........There can be more than just one thing responsible for thhe things happenning in your body....

    I wish you all the best take care

     
    Old 02-07-2009, 04:58 PM   #15
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    Re: Ferritin 2; Doctor will not test B12

    I agree you need to find out why as things can be familial.....

     
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