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  • B12 Deficiency questions, help please....

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    Old 06-06-2010, 02:39 AM   #16
    Rawspice
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    Re: B12 Deficiency questions, help please....

    Quote:
    Originally Posted by TracyRae View Post
    I know it's confusing but there are always 2 possibilities. If you have a B12 deficiency, like I do, you have megaloblastic anemia. That is anemia from B12 deficiency. To have pernicious anemia, you lack intrinsic factor, a product of the somach, that takes B12 from food and distributes it throughout the body. To find out of you have pernicious anemia, they do what is called a "schilling test". It's too hard to explain so if you are curious, look it up under search. But if they have never done that, than you must just be deficient. I have been getting B12 shots for 10 years because I had been anemic when it was discovered, and even with the shots my B12 level dropped to 324, which they consider anemic, so I am now getting my shots twice a month instead of once, just to get my levels back up. It does take time to build it, but normal levels of B12 are 180-914. Although most Drs. tend to think under 500 is anemic. So they prefer you to be at the higher end.
    But I read somewhere that megaloblastic anemia is also called pernicious anemia? My doctor told me that I don't have anemia, he checked my intrinsic factor, he said he doesn't know why my B12 level is so low unless it's to do with my diet...but I'm not a vegetarian, my diet is varied. You mention that anything above 180 is in the 'normal range', but you also say that most doctors reckon that anything under 500 is considered anemia, so they are saying that anemia is considered normal?

    Interestingly my B12 went up from 91 to 101 BEFORE I started my injections, I had the blood test before I took any shots, I only got the results last week. My doctor is going to check my B12 again after my next shot in late august, then we will see if the injections have helped.

    What type of B12 are you injected with, Cyanocobalamin?

    Last edited by Rawspice; 06-06-2010 at 02:52 AM.

     
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    Old 06-06-2010, 02:41 AM   #17
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    Re: B12 Deficiency questions, help please....

    Quote:
    Originally Posted by jonnstar View Post
    It may be then that the low B12 leval was coincidental, and your ill health has some other cause. However, I would give it some more time before you make that assumption.

    I take it you have had your heamoglobin, ferretin and thyroid checked?

    Do ask your doctor if you can take a multivitamin with iron, it might make a difference to your wellbeing.
    I was thinking the same, that my ill health could have some other cause. Is it possible that your B12 can be 91 and not have symptoms?

    My doctor gave me another blood test to investigate why my B12 is low, he said the rest of my blood work is normal but I'm not sure of all the things he checked for. He can't think of a reason why my B12 is low unless it has something to do with my diet, but I eat a lot of meat and dairy products. However I don't eat cereal anymore and I don't drink tea, so I'm losing out on some milk there, but could that alone cause my B12 to drop that low?

    My doctor said my iron is fine so I don't need to take anything.

    Last edited by Rawspice; 06-06-2010 at 02:54 AM.

     
    Old 06-06-2010, 02:58 AM   #18
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    Re: B12 Deficiency questions, help please....

    Provided you eat some meat and stuff, i think the low leval would be due to malabsorbsion from the diet. That can be due to bacterial overgrowth in the gut, coeliac disease, and other things that affect the gut. It might be worthwhile asking about a test for gluten intolorance

    If you didnt have pernicious/megoblastic anaemia, then yes, it is possible that the lack of B12 wasnt causing any symptoms. That doesnt mean you shouldnt treat it though, because it can have severe consequences later on if not treated now.

    Last edited by jonnstar; 06-06-2010 at 03:02 AM.

     
    Old 06-06-2010, 12:18 PM   #19
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    Re: B12 Deficiency questions, help please....

    Quote:
    Originally Posted by jonnstar View Post
    Provided you eat some meat and stuff, i think the low leval would be due to malabsorbsion from the diet. That can be due to bacterial overgrowth in the gut, coeliac disease, and other things that affect the gut. It might be worthwhile asking about a test for gluten intolorance

    If you didnt have pernicious/megoblastic anaemia, then yes, it is possible that the lack of B12 wasnt causing any symptoms. That doesnt mean you shouldnt treat it though, because it can have severe consequences later on if not treated now.
    My doctor has already tested me for coeliac disease.

    Well I do know that my mouth ulcers were due to my low B12, I was getting ulcers one after the other, that was the reason they checked my B12 in the first place. As for my other symptoms I don't know.

     
    Old 06-06-2010, 05:34 PM   #20
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    Re: B12 Deficiency questions, help please....

    What, briefly, are your other symptoms?

     
    Old 06-06-2010, 09:00 PM   #21
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    Re: B12 Deficiency questions, help please....

    Well I've had ill health for many years now, I've had some symptoms in the past that I don't suffer with right now, that's important to point out because I don't know how long my B12 has been low, could be years or just months. The symptoms I have 'right now' are below.

    I can get major fatigue where I need to take naps often, very weak and arms and legs feel heavy/ache, many tender points...I always feel cold! Loud tinnitus in one ear, mega itchy scalp with hair loss, my neck always aches/feels stiff and you can see a bulge in my neck and feel another one on the back of my shoulder, lower back ache. Diarrhea sometimes, I can find it hard to say certain words sometimes, hard to concentrate, mood swings. I'm sometimes sensitive to sound but more so in the past. In the past I also suffered with these symptoms below.

    Stomache cramps(this seemed to go away when I stopped eating certain things), dizzy, tmj/headaches, sweating for no reason. You only have to look at my past posts on this forum to see that I suffered greatly with TMJ and nasal problems, I realize that some of my symptoms can still be related to that.

     
    Old 06-07-2010, 02:37 AM   #22
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    Re: B12 Deficiency questions, help please....

    Have you considered CFS/Fibrmyalgia as a diagnosis?

    Hopefuly there is still time for the B12 to make a difference, and you can still ask the doctor about a multivitamin/mineral supplement

     
    Old 06-07-2010, 04:06 AM   #23
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    Re: B12 Deficiency questions, help please....

    Gee you are right.....I hadn't compared the 2 anemias before (megaloblastic vs. pernicious) so having 2 different names I assumed they were not the same. In my case then I guess I just have a deficiency that makes me anemic because I have never been tested for pernicious. I plan to see my Dr soon and get some answers. I don't know why mine is low either, as I too have a varied diet and am not vegan. But yes, the "norms" at the labs for B12 are 180-914, yet if you get too low they consider you to be anemic, as your RBC goes down, which mine has done.....which makes people anemic. I don't think your body has to be completely out of B12 to be anemic, you just have to be on the lower side. Drinking milk has nothing to do with B12 deficiency.....that would be more likely a vitamin D deficiency. Meat and eggs have most of your B12.

     
    Old 06-13-2010, 03:11 AM   #24
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    Re: B12 Deficiency questions, help please....

    Quote:
    Originally Posted by jonnstar View Post
    Have you considered CFS/Fibrmyalgia as a diagnosis?

    Hopefuly there is still time for the B12 to make a difference, and you can still ask the doctor about a multivitamin/mineral supplement
    Yes, I have brought them up before with my doctor, especially Fibro. My doctor said there was no point diagnosing me with that because there is nothing they can do for it anyway...

    I got a letter from my doctor yesterday saying that another blood test result has come back, it shows that my Vitamin D is lower than normal. My doc wants me to start taking 2 calcium tablets a day...I think I might have Osteomalacia. I shouldn't think that all my symptoms are related to one thing, I could be suffering with more than one condition.

    Last edited by Rawspice; 06-13-2010 at 03:12 AM.

     
    Old 06-13-2010, 12:55 PM   #25
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    Re: B12 Deficiency questions, help please....

    Rawspice--Welcome

    Have you had a full work up for autoimmune diseases by a Rheumatologist? I wasn't sure, I haven't read all your posts, but wanted at least to suggest this if it hasn't been already. I have many of the same (many non-specific) symptoms as you and after 3 years of that (due to my long term anemia) I was DX'ed with FM, for what that is worth. There are meds to treat with if you can tolerate them. Hope this helps. Yes, you can always be looking at multiple things. Take care.
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    Old 06-13-2010, 09:55 PM   #26
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    Re: B12 Deficiency questions, help please....

    hi,i just wanted to add that it is worth it to get a fibromylagia diag.your gp can send you to a rhumatolojist for this and there are a few different tablets that can help you with pain.i had been in so much pain all over my body for years and my gp kept saying i had a viris or flu.i stopped going and suffered in silence till i could take no more of the pain,night sweats,tiredness boby aches arms and legs felt like led weights were attached to them and i had nerve pain all over body.many other symproms sore skin felt like i had been burned.my rhummy sent me to his pain clinic and put me on dyhydracodene and gabapentin im also on a patch called butrans.i have the pain under control some of the time but not all,i now have the odd good day were i can leave the house for a little while.dont rule out being diag with fibro you should get help for this as i think you could have it ( no im not a dr) just by your symptoms.also iv been getting my bloods done every month since aug o9 and my b12 is low im now waiting on results of thyroid ters and ceoliac disease also perniciouse anaemia.i get my results this week so we seem to have some things in common.i was happy that you got so many replys as iv been worrying myself sick due to waiting on these results and wondering why my gp hasnt put me on b12 injections.i was at hospital reasently and they asked me how i was doing on the injections and when i said i wasnt on them they called my gp to find out why.ill find out more when i get my results im not a vegetairn either and my diet is varied,but i cant eat daity as i get bad diorrea and vomiting even with a sip of milk.i wish you the best of health and hope you feel better soon bellagal

     
    Old 06-13-2010, 10:21 PM   #27
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    Re: B12 Deficiency questions, help please....

    If your vitamin d is low, you will need to take extra vitamin d as well as calcium.

    NSI make good quality vitamin d that is avaliable online quite cheaply ($10 for a years supply)

     
    Old 06-18-2010, 04:20 AM   #28
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    Re: B12 Deficiency questions, help please....

    Quote:
    Originally Posted by FLFLOWERGIRL View Post
    Rawspice--Welcome

    Have you had a full work up for autoimmune diseases by a Rheumatologist? I wasn't sure, I haven't read all your posts, but wanted at least to suggest this if it hasn't been already. I have many of the same (many non-specific) symptoms as you and after 3 years of that (due to my long term anemia) I was DX'ed with FM, for what that is worth. There are meds to treat with if you can tolerate them. Hope this helps. Yes, you can always be looking at multiple things. Take care.
    Hi FLFLOWERGIRL,

    I've never seen a Rheumatologist, or at least I don't think I have, I should ask my doctor about seeing one. I've never had an MRI either. How is your health now compared to before you were diagnosed? Thanks for your advice.

    Last edited by Rawspice; 06-19-2010 at 09:20 AM.

     
    Old 06-18-2010, 04:22 AM   #29
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    Re: B12 Deficiency questions, help please....

    Quote:
    Originally Posted by jonnstar View Post
    If your vitamin d is low, you will need to take extra vitamin d as well as calcium.

    NSI make good quality vitamin d that is avaliable online quite cheaply ($10 for a years supply)
    I started taking 'Calcichew D3 Forte' the other day which my doctor prescribed, I took one in the morning and one at night but I started to get stomach aches. So last night I took both tablets together at night instead to see if that helps my stomach...

    Last edited by Rawspice; 06-18-2010 at 04:22 AM.

     
    Old 06-18-2010, 04:26 AM   #30
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    Re: B12 Deficiency questions, help please....

    Quote:
    Originally Posted by bellagal View Post
    hi,i just wanted to add that it is worth it to get a fibromylagia diag.your gp can send you to a rhumatolojist for this and there are a few different tablets that can help you with pain.i had been in so much pain all over my body for years and my gp kept saying i had a viris or flu.i stopped going and suffered in silence till i could take no more of the pain,night sweats,tiredness boby aches arms and legs felt like led weights were attached to them and i had nerve pain all over body.many other symproms sore skin felt like i had been burned.my rhummy sent me to his pain clinic and put me on dyhydracodene and gabapentin im also on a patch called butrans.i have the pain under control some of the time but not all,i now have the odd good day were i can leave the house for a little while.dont rule out being diag with fibro you should get help for this as i think you could have it ( no im not a dr) just by your symptoms.also iv been getting my bloods done every month since aug o9 and my b12 is low im now waiting on results of thyroid ters and ceoliac disease also perniciouse anaemia.i get my results this week so we seem to have some things in common.i was happy that you got so many replys as iv been worrying myself sick due to waiting on these results and wondering why my gp hasnt put me on b12 injections.i was at hospital reasently and they asked me how i was doing on the injections and when i said i wasnt on them they called my gp to find out why.ill find out more when i get my results im not a vegetairn either and my diet is varied,but i cant eat daity as i get bad diorrea and vomiting even with a sip of milk.i wish you the best of health and hope you feel better soon bellagal
    Hi Bellagal,

    Yes it's like my legs and arms have weights attached to them. Night sweats is another symptom I've had actually but I have not had one for a long time now. I shall have to mention dyhydracodene, gabapentin and butrans to my doctor when I next see him, do any of these things have nasty side effects that can make you feel even worse? I'm sorry you have been suffering so much, sounds like you have been through hell. So you're almost housebound, you have someone that helps look after you? All my symptoms ruined my life, I can't do anything I want to do anymore. I was tested for ceoliac disease, have you got your results back now? How low is your B12? If your B12 is low then your GP should have already started you on injections, there is no point waiting for other results. When my doctor said my B12 was low he also sent me for other blood tests, but he said you can start the injections now if you want. So I said to him I don't know, you're the doctor lol, you tell me if I should start them now, then he said that I should start the injections now so I did. I think I had a blood test years ago that showed I was slightly allergic to cows milk. Thanks for the advice.

    Last edited by Rawspice; 06-18-2010 at 06:05 AM.

     
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