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    Old 10-13-2008, 07:34 PM   #61
    scout316
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Hi RainbowsEnd.....I decided to post on the anemia board to you,seeing B12 is discussed more over here.Hope you find me here!

    I wanted to ask you how your platelet levels are.Mine have always been borderline low,but they picked up since getting the B12 shots.They are at the low end still,but better.

    As far as repairing the neurological damage goes I noticed I have less back problems now.I used to feel this penetrating weakness down my whole spine,but seems to have gotten so much better in the last few monthsDo you have back pain/weakness or did you have it before?Just wondering.

    Once in awhile I get the pins'n needles feeling in my fingers or a slight numbness,but not bad like it used to be.Also I used to have a lot of pain in my shins,but that is gone now.

    I still feel the weakness in my hands,arms and legs,but it's less than it was.I noticed that the blurrines is less now too.Before I would be watching television and I would look away and the colors would seem to hang on.

    Anyways I hope you are feeling well this week.....I'm so happy you have so much good advice about B12...you are soooo helpful to everyone here...thank you Scout~

     
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    Old 10-14-2008, 04:00 AM   #62
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    It is really interesting--I just found out I have a B12 deficiency and I have had all of the symptoms they talk about having this deficiency, weakness, foggy head, etc.... I am anemic and thought all of the symptoms are coming from that, but now I am wondering if some of these symptoms are not from low B12..

     
    Old 10-14-2008, 06:47 AM   #63
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Quote:
    Originally Posted by Ashleymichele23 View Post
    It is really interesting--I just found out I have a B12 deficiency and I have had all of the symptoms they talk about having this deficiency, weakness, foggy head, etc.... I am anemic and thought all of the symptoms are coming from that, but now I am wondering if some of these symptoms are not from low B12..
    Hi
    Yes I would have to say they probably are....
    What sort of B12 therapy has your doctor suggested for you........And do you have a lot of tingling numbness ect

    Cheers

     
    Old 10-14-2008, 06:56 AM   #64
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Hi Scout
    I found ya
    Lovely to hear things are really improving for you
    I will check my platlets and let you know I know my ferritin was low...

    I had shin pain to it would kill every time I walked...and severe back pain in the middle of my back around my spine that was horribel I remember thinking that I had pancreatic cancer at the time...The anxiety you get with the deficiency just compounds everything your thoughts just run in the worst case directions I would freak if my kids hurt themselves or has a headache I would presume the worst thank goodness that has all gone......

    I had another injection today I love the feeling I get from them it is really hard to explain it is like a feeling of real wellbeing very calm and centered I havent felt like that for years if at all.....

    Keep up the great work with your posting and your true compassion for other is just lovely what an inspiration you are.......

    Well chat soon
    have a great day I hope its not to cold

    Rainbows End

     
    Old 10-14-2008, 06:56 PM   #65
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Hello RainbowsEnd....love talking with you about our B12 issues!

    Hey I know the feeling...when I used to get my injections from the hematologist I always felt better...the first one was surreal..I felt like I was on a tranquilizer...all the anxiety just seemed to flow out of me...and I felt like that for 3 whole days.I wonder if I was getting methylcobalamin then?I'll have to find out on that one!

    Yes I researched the pros and cons of methylcobalamin verses cyanocobalamin....of course my dear you were Absolutely right!I knew you would be....oh my gosh I hope my dr. will change me to methyl.I read cyanocobalamin hasto be converted to methylcobalamin and it actually has a bit of cyanide in it....Oh No Yuck!!!!That makes me want to vomit!!!!

    Also they said that methylcobalamin goes directly to the tissues and repairs the damage better.

    I'm so fortunate you shared your knowledge about this with me...otherwise I probably never would have known there was such a huge difference in types of B12 they use.

    I just looked at my lbs from a few weeks ago...they are pretty good,but my dr. didn't check too many things.

    My B12 was up to 420(normal 200-1100 here),my folate was 16.4(normal here is above 5.4)so that was excellent..my folate serum has always been normal so no folic acid deficiency there.Does your dr. check your MMA often...this dr. has Never checked my MMA

    My methylmalonic acid(I suppose that is MMA isn't it?)has always been extremely high...that's what all my other drs. found out on my labs before.So I am curious to know how it is now

    My other counts were:
    white cells 7.0(3.8-10.8)
    red cells 4.76(3.80-5.10)
    hemoglobin 14.6(11.7-15.5)
    hematocrit 42.5(35.0-45.0)
    MCV 89.2(80.0-100.0)
    MCHC34.5(32.0-36.0)
    RDW 13.0(11.0-15.0)
    Platelets 161(140-400)

    So my dr. said it looks good...but I don't feel that good...hahaha!

    So those are my current lab numbers.Any comments from you I surely love to hear!My dr. thinks my B12 is so good now...but he still gave me a shot,because he knows it drops soon afterwards.

    Last time he checked my ferritin it was 11(the range was 10-90(I thinkthe high # was 90...not sure,but I know the low # was 10!)....but he never told me I needed iron........a year later a different dr. checked it and it was up to 55...so I have no idea what it is now,but my dr. says my iron should be okay,because my hemoglobin is okay.I just wonder,because I still get a lot of weakness in my hands and feet.

    Labwork is so exciting though,now isn't it?Ha Ha Ha!I guess that's what we look forward to when we are being treated with B12 injections....so funny!

    Is it better now that my white cells are up so much,because they are usually around 3 -4?Just wondering about that one.

    I am so tired lately...I slept 10 hours last night(a lot for me!).Maybe I'll have some energy tomorrow...I hope so,because I desperately want to go shopping!I must note that I have a passion for the Teletubbies(my little grandson Benny is 7 and my husband and I raised him for over 5 years(his mom has emotional problems and my son had to work so we helped out watching the liitle guy..Benny has mild cerebral palsy...he talks better than kids his own age,but he uses a little reversable walker,but he can walk slowly with a walking cane now)...anyways Benny has loved the tubbies since he was a little baby and I fell in love with them too...hahaha!I found a lady who sells brand new teletubby stuff online and so I managed to buy quite a few tubby items from her....I'm so funny,aren't I?

    So anyways I'm soooo happy your shot works so well for you...that put a Huge Smile on my face to hear that!!!!

    Take care...talk soon~Scout

     
    Old 10-15-2008, 07:19 AM   #66
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Yes, Scout and thank you for your reply. My mom was admitted to another hospital back in December (Neurology Unit) and had an MRI, CAT scan, etc. They said she was depressed. She was there a week and that's all they could find. Which is why I don't understand this diagnosis. She had a PET scan and it was to determine if she had Picks or Alzheimers and it came back as Early onset Alzheimers. Yet, MRI's are finding nothing. I don't know. I am having the ALF doctor test her B-12 levels and see if this is a possibility? Why didn't her neurologist think about this??? Ughh!!! If I find out that this is the reason for all of her Anxiety and confustion....I will be elated and really ****** off at the same time! She has lost everything, her life, her home, job, everything!!! Not to mention a whole year of her life! Thanks for the help...I'm so glad I found this board!!!

     
    Old 10-15-2008, 08:10 AM   #67
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Quote:
    Originally Posted by emmaspaws View Post
    Yes, Scout and thank you for your reply. My mom was admitted to another hospital back in December (Neurology Unit) and had an MRI, CAT scan, etc. They said she was depressed. She was there a week and that's all they could find. Which is why I don't understand this diagnosis. She had a PET scan and it was to determine if she had Picks or Alzheimers and it came back as Early onset Alzheimers. Yet, MRI's are finding nothing. I don't know. I am having the ALF doctor test her B-12 levels and see if this is a possibility? Why didn't her neurologist think about this??? Ughh!!! If I find out that this is the reason for all of her Anxiety and confustion....I will be elated and really ****** off at the same time! She has lost everything, her life, her home, job, everything!!! Not to mention a whole year of her life! Thanks for the help...I'm so glad I found this board!!!
    Hi
    I am so sorry about your mum.....When you have her tested foe B12 I recommend you ask for the following..

    B12 serum
    Homocysteine
    MMA (these will be elevated in a deficeincy even if the levels are so called normal)
    Folate

    Most doctors just dont think about it if you dont have anemia which is soooo wrong.......

    I believe but dont quote me on this if they have not ever checked your mums B12 levels and she has damage because of it is malpractice But docs may have done it & just never said anything as it may have been in the normal range which is grossly wrong anything under 500 can cause neuro damage...

    But for now it is great you are getting this tested but please make sure to ask for all 4........I hope you get the answer because at least it can be treated.....

    I wish you luck and all the best for your mum

    Good Luck

     
    Old 10-15-2008, 08:54 AM   #68
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    I am SO surprised at how these doctors do not check for the B12 deficiency when people keep coming back with the same symptoms. When I had my B12 checked a few weeks ago and the only reason I had it done was because of these boards and hearing the symptoms and I pretty much have most of them they talk about w/B12 deficiency, along with anemia, my doctor called me and said I was deficient and take B12 w/Folic acid, but that is all he said, I have no idea what my numbers were and he made light of it. This could be the reason why I am exhausted, why I feel brain fog and why I have weakness when I walk sometimes, it sounds like these are all symptoms of this. Why do the Drs. miss this?

     
    Old 10-15-2008, 09:35 AM   #69
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Quote:
    Originally Posted by hopalong_too View Post
    ....I also paid for a Candida Albicans test (ELISA) and just got the results--POSITIVE. ...

    I hope I can get to the bottom of the problem before it manifests into something unfixable! I am just not sure where to turn anymore!..
    If I were in your shoes, I would do some serious reading about lyme's disease and about Babesiosis, a coinfection of lymes. While lyme's presents with over 100 different symptoms (some people only have one symptom), anemia is a symptom of babesiosis...other symptoms include fever, chills, fatigue, muscle and joint pain.

    Doctors often use the elisa to test for lymes but often it comes back "negative"...interesting that you tested positive...lymes and candida are common "friends".

    Take care.

    Bethsheba

    Last edited by bethsheba; 10-15-2008 at 09:38 AM.

     
    Old 10-15-2008, 11:11 AM   #70
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Quote:
    Originally Posted by Rainbows End View Post
    Hi
    I am so sorry about your mum.....When you have her tested foe B12 I recommend you ask for the following..

    B12 serum
    Homocysteine
    MMA (these will be elevated in a deficeincy even if the levels are so called normal)
    Folate

    Most doctors just dont think about it if you dont have anemia which is soooo wrong.......

    I believe but dont quote me on this if they have not ever checked your mums B12 levels and she has damage because of it is malpractice But docs may have done it & just never said anything as it may have been in the normal range which is grossly wrong anything under 500 can cause neuro damage...

    But for now it is great you are getting this tested but please make sure to ask for all 4........I hope you get the answer because at least it can be treated.....

    I wish you luck and all the best for your mum

    Good Luck
    Thank you Rainbows End...I just spoke to the doc at the ALF and he basically told me that I am in denial about my moms dementia and that I need to accept this. Okay, then please tell me why NONE of the Benzodiazepines (Xanax, Ativan, etc.) have helped her nerves or shaking. She is in a constant state of Anxiety and can't tell me why she's shaking! She walks around like she is in a daze and only speaks when spoken to and VERY softly. This is a woman in her mid 60's who just a year ago was living by herself, had her own business, cute sporty car, always looked nice, etc. Now she walks around hunched over and looks like she could be 80!!! It is so sad and I just can't stand for her to be in such turmoil. If I can help get rid of her anxiety or at least help it, then I wouldn't care if she could remember my name! Which, she does know by the way! Thanks for the help!

     
    Old 10-15-2008, 02:00 PM   #71
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Emmaspaws,

    I have just read your post and I don't think you are in denial, I think you are wise to question EVERYTHING...and I don't think your mother has alzheimers...as for the doctor, my opinion, but I would fire him!

    There are over 200 conditions that can impact memory and cognitive function...the fact that she speaks softly suggests her senses may be hypersensitive (she hears things louder than they are or feels vibrations stronger than someone else would for example) the shaking, the anxiety, etc.are other symptoms of something gone amok...

    Can you give us more info??? What kind of health history does she have? What meds has she taken? When did her symptoms occur? Did they occur overnight? Gradually? Do they come and go?

    Although she may have a b12 deficiency, it is important to find out what is causing her other symptoms as well...because they all may be caused by another conditon.

    Bethsheba

    Last edited by bethsheba; 10-15-2008 at 02:23 PM.

     
    Old 10-15-2008, 07:04 PM   #72
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Quote:
    Originally Posted by emmaspaws View Post
    Thank you Rainbows End...I just spoke to the doc at the ALF and he basically told me that I am in denial about my moms dementia and that I need to accept this. Okay, then please tell me why NONE of the Benzodiazepines (Xanax, Ativan, etc.) have helped her nerves or shaking. She is in a constant state of Anxiety and can't tell me why she's shaking! She walks around like she is in a daze and only speaks when spoken to and VERY softly. This is a woman in her mid 60's who just a year ago was living by herself, had her own business, cute sporty car, always looked nice, etc. Now she walks around hunched over and looks like she could be 80!!! It is so sad and I just can't stand for her to be in such turmoil. If I can help get rid of her anxiety or at least help it, then I wouldn't care if she could remember my name! Which, she does know by the way! Thanks for the help!
    Hi There emmaspaws

    Oh I am really sorry to hear about your run in with the doc however it is not surprising.......
    I agree you are not in denial (they think they know it all dont they) you are wanting to help your mum I think the fact that if you are right he is wrong and we cant have that can we LOL.....
    Vever miond the fcat that dementia can be caused by a B12 deficiency in the first place and that is caused by something else you dont just get it for nothing......Any one of your mums age presenting with those symptoms needs a B12 test it is wrong to deny her that...
    I agree with the preceding statement fire the doc and hir a new one you may need to do this s few times but i think it is a option worth considering......

    She certainly has the symptoms...Are you able to get copies of all the bloods shes ever had to see if they have taken B12..........
    As I said they are obliged to take a B12 with neuro symptoms you could put that to him...You could say ok if you are right then ok your right but lets check anyway we have nothing to loose...And if I am right perhaps we can help my mum"...Or well if your right the B12 tests will be normal and your right but what if your wrong" Sometimes we need to be bold and persistant this is the only thing that worked for me.....There is plenty info out there about your mums symptoms and b12 take it to him annoy him persist demand if you have to........
    If there is a deficiency none of those meds are going to do much at all...What did he say when you said that to him ...about the meds not working

    Please keep trying I know you will any way I can detect some very strong determination your mum is lucky to have you there and I am sure she appreciates what you are doing you have to try dont you.....

    If she has a B12 deficeincy the type of b12 is crucial and the amount as well to get the symptoms healed all haltered at the least.....

    You could try using the subs if you cant get any doc to acknowledge you but i feel it is important to find out why she has it.......

    If you can get copies of those bloods even FBC post the results I would love to see them........

    The very best of luck go for it I am thinking of you

    Cheers
    Rainbows End

     
    Old 10-15-2008, 07:10 PM   #73
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Hi Bethesba, thanks for the support. yes, I can give you more details. It started back in September of '07 when she was complaining of severe stomach pains and the doctor diagnosed her with H Pylori and GERD. He put her on Nexium, CIPRO and was on Omeprazole as well. These are all stomach meds and she started on them in March '07. In April she was put on Phenazopyridine for her frequent Urinary Track Infections, which she got probably once a quarter for the last two years. In May he put her prednizone (not sure what that was for). In October just as the anxiety attacks started coming, she started taking Tetracycline for her H Pylori. The doctor put her on samples of Lexapro for the anxiety/depression as well as 1.5mg Xanax per day and she was taking Metoclopramide HCL for Stomach problems. When she complained that the anxiety wasn't going away and the stomach problems weren't resolved, he increased her Xanax to 3mg per day(double!). She was only 117lbs and 5'2". Petite little thing! While visiting one day, she was so lethargic and couldn't speak, so I took her to the hospital (it was a Saturday and her doc wasn't available). She was told that she was on too much Xanax and gave her fluids. The Nurse Practitioner in the ER said to stop taking the Xanax immediately and that she needed to see a Psychiatrist. (we had an appt. for the next day). She was in the ER all day and I am guessing went through withdrawal...by the time we got home that evening, she was angry, talking about secrets she had kept from our family all my life, almost suicidal. We took her to the Psych ER at the hospital and she was so violent that we had to Baker Act her and she tried to kill herself because they put her in a very small room and she is VERY claustrophobic. The Psychiatrist in the hospital the next day (without taking a family history by the way) diagnosed my mom as Schizophrenic! Say what???? We were apalled and totally helpless. Now she was locked up and they started giving her Haldol, Geodon, Prolixin Dec, not to mention Folvite (not sure why) and Prilosec, Nexium, Pepto Bismol, Mylanta!!! The list goes on and on. She went crazy after a week of being on all that stuff! This lady (aside from the stomach meds she started taking in '07) had never had to take medicines for depression, anxiety, never showed any signs of being Schizophrenic, etc.

    AFter two weeks of being in that place, we got her in to see another pyschiatrist and he took her off the Geodon and Haldol and put her on Risperdal, Ambien for sleep, Klonipin for anxiety. Nothing, I repeat nothing even touched her shaking and nervousness. She has been in and out of hosoitals even through December. She was admitted on the Neurology ward for one week and had CT scan and MRI and saw a psychologist while there. They left there not knowing any more than going in. She was diagnosed with depression. While taking the Klonipin, she started losing some cognitive function (she insisted that the frozen meals were raw and that she didn't know how to cook them in the microwave). After telling her it was already cooked, she kept arguing with me...but how do I know it's cooked??? That was the first sign of memory loss. Her next Psychiatrist claimed that the Klonipin has been making her lose her memory and then prescribed Paxil for her anxiety. BIG MISTAKE!!! She then went ballistic and told my sister that the voices told her she had to kill her. We panicked and got her doctor to admit her into a different hospital for her safety. She was there or two weeks and was put on Seroquel and many other meds for her hallucinations, etc. He then diagnosed her with Psychotic Depression. When she got out of there, we never heard from him again. He didn't know what to do with her. So now we have her at an ALF and she is depending on people to cook for her. She still has the ability to toilet, bathe, eat, etc. on her own. In april she was taken off ALL meds for a month to see what her body would do. The shaking continued and her speach got very quiet. She does play with my children, but very limited. She likes to play the same games that she knows. She walks about 5 feet behind me and walks very slowly. She kind of walks like a duck.

    After seeing a neurologist for a month, she ordered a PET scan to determine if the dementia is Lewy Body Dementia or Alzheimers. The PET scan indicated early onset Alzheimers. I guess the PET scan uses metabolism of sugar and the levels based on her PET scan showed Alzheimers.

    I am not convinced because she doesn't seem to have a memory problem. She has some cognitive problems, like she forgets to lock the door, she walks in front of people and isn't conversational at all. She is like a zombie.

    If you could have seen her last year...she was a 65 year old vivacious woman who drove a sporty car, worked for herself. Completely independent and lived for her grandbabies!!! She absolutely LOVED life! Now, a year later, her anxiety isn't any better and she shakes all day. Complete misery. If this is Alzheimers, why aren't any of the Benzodiazepines working. By the way, she is also on Exelon to help with memory (an Alzheimers drug). Why isn't anything helping her????

    I am not willing to stand by and watch her in misery every day because nobody wanted to test her for B12. It may not be the problem, but how can I not have her tested???

    Sorry about such a long post, but maybe someone will read this and have an idea that I may not know about. Thanks for reading!

    emmaspaws

     
    Old 10-15-2008, 07:15 PM   #74
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Quote:
    Originally Posted by Ashleymichele23 View Post
    I am SO surprised at how these doctors do not check for the B12 deficiency when people keep coming back with the same symptoms. When I had my B12 checked a few weeks ago and the only reason I had it done was because of these boards and hearing the symptoms and I pretty much have most of them they talk about w/B12 deficiency, along with anemia, my doctor called me and said I was deficient and take B12 w/Folic acid, but that is all he said, I have no idea what my numbers were and he made light of it. This could be the reason why I am exhausted, why I feel brain fog and why I have weakness when I walk sometimes, it sounds like these are all symptoms of this. Why do the Drs. miss this?
    Hi Ashleymichele23
    Most certainly is thecause of your problems
    It is great you heeded the advice and you obviously felt truth in it and had the tests good for you...
    I dont know why docs dont pick it up perhaps they like to look for the major things first even though we know deficiency is very major.. I had many tests for it but at first it was always in the normal range even though it was low then it went way down past normal by this stageI was pretty well ill......I think if I wasnt diagnosed )and it really was very strange how I come to get that last test but thats another story I know persistance helped) I would have no memory either be dead or in a nursing home and i really mean that I was that bad & I am only 43.....
    Can you get hold of your levels?
    I also think he is being to blaze about this you need to have other tests to find out why you are deficient there can be some big issues underlying there that need to recognized gluten being one of them..
    Also are you taking oral pills or injections and how much and what type of B12 these are all relevant......

    Cheers
    Rainbows End

     
    Old 10-15-2008, 07:29 PM   #75
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Dear emmaspaws

    Thanks for recent posting it has helped a bunch I was thinking h-pylori and you confirmed this this will cause a deficiency not to mention all the drugs that are taken for it Prilosec, Nexium, Pepto Bismol, Mylanta!!! oh my goodness.... Destroying even more stomach acid when there was hardly any to start with.....
    Then all the other meds will just mask the deficiency and wont do any thing as the deficiency is continuing to eat away at the nervous systems brains and cardivascular systems.....

    Under the circumstances as this started around the H-pylori and then all the meds compounding the deficiency & just a continuing down slide in a short time (she may have had the h-pylori for a very long time) I wil say she is probably B12 deficient for sure.......

    Cheers
    Rainbows End

     
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