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  • Vitamin B12 deficiency and extremely tired don't find injections help much

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    Old 10-08-2008, 04:56 AM   #46
    robinegg
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Quote:
    Originally Posted by moommin View Post
    hi my b12 is on low normal 227,range 180,800,doc said it is normal,i have a lot of symptoms ranging from twiching numbness,memmory problems,blurry vision,to name but a few,i get a lot of pain in the back of my neck and numbness in the front ,i also loose my sense of taste,do anybody have this or could it be nerves,thanks shirley
    Dear Shirley
    Your B12 is certainly low.....It is not surprising you have those symptoms....I had all those problems plus many more.........
    Has your doctor done a uMMA & Homocysteine test these will be elevated in a B12 defeincy even if your levels are in the normal (which by the way is 550-1200 in Japan it is way to low herre)....When you say could it be nerves do you mean stress,anxiety ect?......B12 will cause havoc on your nervous system.......I have a defeincy or should i say did almost all my symptoms have gone thanks to some good treatment from my doc......So if I can help in any way please let me know......scout is also knowledgable in this area perhaps she will chime in tooo.
    Keep in touch

    Cheers
    Rainbow End

     
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    Old 10-08-2008, 05:54 AM   #47
    Ashley9045
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Moomin,
    It is very interesting reading your post, loss of taste--- I have been anemic, low ferritin, low D, low thyroid this past 8months.. numbers have gotten better on supplements but I never had my B12 checked and my cortisol levels and had that checked last week. The Dr. called me and said I should start a B12, folic acid supplement twice a day due to the slighlty low number (although I do not know what he is considering slight). I too have had the numbness, the worst thing has been the loss of taste and I have not been able to explain it to anyone--sometimes it is fine and other times I cannot taste what I am eating. I wonder if it is coming from the B12 deficiency. Does anyone know if this can cause this. With the low ferritin and anemia that causes so many physical symptoms I have gotten so confused on what is causing anything anymore.

     
    Old 10-08-2008, 06:18 AM   #48
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    A B12 deficiency can cause loss of taste if you are lacking in zinc this can cause it too........

    I still have not much taste value hoping it will get better.......The other symptoms I had over shadowed this but now they are better you start focusing on the others like this one at least my apetite has improved

    Hope this helps

    But as i said I would talk to your doc about those injections especially if you have numbness,,,

    Out of interest what dose of supplements has your doc suggested you take?

     
    Old 10-08-2008, 10:27 AM   #49
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    i live in the uk,when i asked dr about b12 results she said b12 was ok and i dont need no treatment becouse my haemoglobin was ok,in my last post i said nerves making my neck numb i meant anxiety,as i was lead to believe all my symptoms were from anxiety for the last five years,i still have iron deficiency but am working on that,my main symptoms are bad memory,bad concentration,fatigue,numbness and pressure in side of face ,eye, neck,and sometimes down below,twiching eye and temple,and in thumb,this comes and goes,numb hands every morning (could be water retension?)brain fog,feel like im in a trance,joints hurt,blurred vision,, heart going mad iv had sound sensativity that comes and goes,anxiety dont like going out,driving anxiety,florescent lights in shops make me feel ill and spaced out,and i panic over every thing,i do have migrains,dr said also silent migrains,i still have iron deficiency,also MVP,shirley

     
    Old 10-08-2008, 09:17 PM   #50
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Hi Shirley.....I have good numbers for my hemoglobin and I am B12 deficient.I live in the US and my B12 was 279 when I was found to have a "hidden B12 deficiency"...RainbowsEnd is right on target...you need the other tests to go with the B12 level...your symptoms are the same as I have had...and I've had a Ton Of Them!!!!I'm so sorry you're going thru all this.

    Please know that when I wasn't getting my shots regularly I was diagnosed with MVP and now my Dr. can't even hear it when he checks my heart....So the low B12 can mess with your heart...Please Ask Your Dr. to give you a monthly shot to get your level up...I agree completely with Rainbows End>ask for the other tests or at least take a B12 supplement for now.

    Again I'm so sorry your Dr. is not knowledgable about B12...this seems to happen to so many people.

    Anything else I can say to help please post back....I Really Care!

    Scout~

     
    Old 10-09-2008, 12:16 AM   #51
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Hi Shirley..
    I agree with scout I also have normal blood levels although my MCV levels were edging up with every test....
    This is were a lot of docs drop the B12 thing because they think if your FBC is normal there is no problem if the bloods are out that can dictate Pernaciuos Anemia also know as Megablastic anemia........

    However this thinking is very out dated as you can have a severe deficiency without blood symptoms like elarged red cells, scout and myself prove that one..

    Its hard when you have to convince someone otherwise isnt it........Is it possible for you to try another doctor...Where abouts in the Uk are you there is a Dr Chandy over there how I believe is fabulous here treats CFS & MS with B12............

    If you can try to get those other tests mentioned before taking supplements as the supplements can skew the test results....

    But with all those symptoms you need treatment for sure ...neurological damage usually occurs before blood changes at least that is what I have heard...There is a small window to repair damage I was told once you have gait problems its around 6 months or it is irrepairable.......But I know of people who have had excellent results after a year of gait problems......When I was really bad I couldnt stand with my eyes closed I would just fall right over that and my digestive issues were the last to occur before I got treatment...
    Please keep us posted...........
    Best wishes to you

    Cheers
    Rainbows End

     
    Old 10-09-2008, 02:50 AM   #52
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    hi and thanks for your replys,i live in wales,i purchased b12 ,cyanocobalamin,50mg from the chemist,about six weeks ago,i asked for a good b12 ,they had to send away for it,( advice from flowergirl) it says take two to three a day or more,?i started taking them and did feel some benefit but stopped becouse dr said she will send me to see a neaurologist,so i thought i will see him first befor supplementing,then i had a change of mind as i could be waiting a long time for the appointment,so i started taking them again, do you think i should stop? will the tabs interfear with the tests?i(f he dose any) i was diagnosed with MVP 15 years ago ,that is another story, sorry if i diddnt answer some of your questions becouse as soon as they are off the screan i forget what you said ,thank you shirley

     
    Old 10-09-2008, 08:33 PM   #53
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Quote:
    Originally Posted by moommin View Post
    hi and thanks for your replys,i live in wales,i purchased b12 ,cyanocobalamin,50mg from the chemist,about six weeks ago,i asked for a good b12 ,they had to send away for it,( advice from flowergirl) it says take two to three a day or more,?i started taking them and did feel some benefit but stopped becouse dr said she will send me to see a neaurologist,so i thought i will see him first befor supplementing,then i had a change of mind as i could be waiting a long time for the appointment,so i started taking them again, do you think i should stop? will the tabs interfear with the tests?i(f he dose any) i was diagnosed with MVP 15 years ago ,that is another story, sorry if i diddnt answer some of your questions becouse as soon as they are off the screan i forget what you said ,thank you shirley
    Hi moommin

    I cant really say you shouldnt or you should that decision needs to be your chioce...........
    It depends how you are feeling really if the tablets are really helping you to feel better and then when you stop you feel worse then that is pretty good indication you need them
    If your doc does those tests then the supplements will skew your results which means he may go off that track all together and confuse the issue...But it has to be your decision.....

    Are you actually taking Cyanocobalamin now....You say you are taking 3 a day at 50mg is that right or is it 50mcg (if that is the case that is just to little amount for a deficiency)......Methycobalamin is a far better option as it works better on neurological damage and stays in the body longer acts faster as it does not have to converted like Cyano does Methyl is the active B12....

    Injections are the best way to start if you can get them as you need a porescription so then its all back in the hands of the doctor and he is going to need proof of the deficiency....

    If you need any more info happy to help you

    Best wishes
    Rainbows End

     
    Old 10-10-2008, 02:17 AM   #54
    moommin
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    rainbow, sorry i put mg ,and itis 50mcg i think i will stop taking them again until i see the neuro,why do you think b12 has dropped i eat a good diet,i do like my glass of wine on my days off from work , i read alchahol can lower b12 my liver tests are fine ,any way will let you know what happens when i see the neurologist,thank you shirley

     
    Old 10-10-2008, 11:51 AM   #55
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Anyone experience anxiety and shaking with a B-12 deficiency? My mom has been given a diagnosis of alzheimers but her only symptom is anxiety, shaking and very mild cognitive problems (forgets to lock the door). I am waiting to hear from her doctor on getting a test for this, but I did get her a supplement of 1000 mcg per day. I pray this helps. It has consumed her life!!! And mine! Thanks!

     
    Old 10-10-2008, 03:20 PM   #56
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Hi....Yes I had Extreme anxiety when my B12 was borderline low!!!!I get a monthly shot and it took about 7-8 shots to get rid of the anxiety.Also I read that a lot of studies are showing patiens with Alzheimers tend to be low in B12...great idea having your mom take a B12 tablet...you can get the sub-lingul(spelling) at health food stores..you just put a drop under the tongue...it's very good(better than the tablets!).

    I also was very shakey and confused when I was so low in B12.....mine is the B12 deficiency that was "hidden"....that's why your dr. needs to do he other tests that go along with the B12 level test...methylmalonic acid test,homocysteine test,folic acid test.

    That is so nice that you're looking out for your mom......hope everything gets better for your her.

    Keep us posted....everyone here on the boards are very helpful and kind.

    Take Care Scout~

     
    Old 10-11-2008, 07:30 PM   #57
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Quote:
    Originally Posted by moommin View Post
    rainbow, sorry i put mg ,and itis 50mcg i think i will stop taking them again until i see the neuro,why do you think b12 has dropped i eat a good diet,i do like my glass of wine on my days off from work , i read alchahol can lower b12 my liver tests are fine ,any way will let you know what happens when i see the neurologist,thank you shirley
    Dear Shirley
    Well I dont think a glass of wine on your day off would cause B12 deficiency I think this only applies to one who drinks a lot everyday consistently.. In fact if one has had a few drinks before having there B12 tested it can actually cause the levels to appear higher I dont know how this works ..
    50mcg is a mere drop in the ocean really I know with any form of neurological damage inc mental symptoms you need to have large doses and then keep the system flooded with it if we look at this in terms of lab tests that means having your levels held at around 1300-2000.......So you can see why those larger amounts are important as is the cofactors of B12.....
    There can be several reasons for a deficiency & it would be wise to have some tests to find out why.....But here are a few of the causes...
    Pernacious Anemia
    Chronic Gastritis
    Gastric Bypass
    Malabsorption Syndromes - such as Crohns, IBS, Celiac,..
    Small intestinal bacterial overgrowth
    Parasites
    Congenitial inborn metabolic errors
    Veganisim, vegatarianism
    Nitrious oxide from surgeries even dental
    pancreatic exocrine insuffiency

    Some drugs will cause for example

    PPI"s & H2 bockers taken for reflux, gerd ect
    Metformin for diabetes
    Alchol
    Some antibiotics (but not certain)

    Hope this gives some help for you.......I am sure your neuro can help some more although some research before you go on your part will help as well..

    Cheers
    Rainbows End

     
    Old 10-13-2008, 07:37 AM   #58
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Hi: I'm a 58 y.o. male with many neurological symptoms, blood test showed 234, doc gave me weekly 1,000 mcg injections for 4 weeks ending Oct. 3, and am taking 5000 Methyl subs now. Many symptoms improved, vision and mental fog within a couple days of first shot, however the fog returns now and then (but not as bad as before) and foot numbness is still there but has not gotten any worse.

    Here's what I am confused about: I have read elsewhere that once therapy has started the blood test is worthless because it will show normal or high.

    But on this board I read about people who get a series of shots, then their doctor tests them again and the number goes from 225 to 300 for example, and supposedly these on-going serum tests are used to monitor how well you are absorbing the B12. Yet other people claim this test is useless in these circumstances, aside from the fact that serum level and tissue level can be quite different.

    What is the truth?

     
    Old 10-13-2008, 08:01 AM   #59
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Quote:
    Originally Posted by Bluze View Post
    Hi: I'm a 58 y.o. male with many neurological symptoms, blood test showed 234, doc gave me weekly 1,000 mcg injections for 4 weeks ending Oct. 3, and am taking 5000 Methyl subs now. Many symptoms improved, vision and mental fog within a couple days of first shot, however the fog returns now and then (but not as bad as before) and foot numbness is still there but has not gotten any worse.

    Here's what I am confused about: I have read elsewhere that once therapy has started the blood test is worthless because it will show normal or high.

    But on this board I read about people who get a series of shots, then their doctor tests them again and the number goes from 225 to 300 for example, and supposedly these on-going serum tests are used to monitor how well you are absorbing the B12. Yet other people claim this test is useless in these circumstances, aside from the fact that serum level and tissue level can be quite different.

    What is the truth?
    hi Bluze
    Good to hear you are feeling better with the injections and great to hear you are taking methylcobalamin subs are you still having injections too?
    methyl is the best for neuro damage I have this in injections in huge doses and my numbness is gone noe I have a little tingling thats great cause I am healing...
    You ask a fair enough question and i will do my best to explainn it as i know it
    The docs usually will take another serum reading after the patient has been offthe B12 for say amonth b12 doesnt stay very long in the system so they usually will give a few injections hoping that it will biuld up & then test agian..if it is still low they may give injections more regularly or if its higher they may pull back a bit.......
    You are right the blood readings are always not reflective of what in the cells that is why the uMMA & Hcy tests are more conclusive........

    I personally think you are better off going by how you feel when you are having thereapy for example the injections or subs or pills may reflective a higher serum level but you can still be having neuro signs to help with alot of these symptoms you really need to saturate the system and the levels should be around 2000 and maintained there for healing to take place this has been my experience and the same for many others I know it is also important to have B12s cofactors as well..............

    I have 3 injections a week at 10,000mcg and my levels would be through the roof luckily my doc doesnt work like that is going by my lessening of symptoms it has worked really well I had severe symptoms for 5 years.........

    Oh I have rambled on again I do this when it comes toB12 it is my passion to make an awareness about it
    I hope i have helped answer your question

    Good luck with your healing

     
    Old 10-13-2008, 07:11 PM   #60
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    hi Bluze....when the dr. does a B12 direct test it measures the B12 that is stored in your liver.When your low on B12 you start using the B12 that is stored in your liver and when your liver stores start getting depleted you become B12 deficient.

    My dr. checks my B12 levels every four months.Yes it can take quite a long time to repair the damage from being too low.

    RainbowsEnd has given you excellent advice....I agree with her totally.

    Hope you feel better...it just takes time to heal.

    Take care~Scout

     
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