I'm new so please forgive me if I ask a redundant question..

My first symptom of having a B12 defiency was that my toes tingled and went

numb overnight. The numbness spread rather quickly to just below the knees..

both feet at the same time. The numbness turned into very painful bee-sting

like pain.. My ankles swelled moderately..my skin is normal to dark pink..

I was rushed into a MRI .. apparently there is a disease in which the body

can go completely numb before it repairs itself. I failed the nerve conduction

tests (they were painful) My MRI came back perfect...

Finally they tested my vitamin levels.. I was told that B12 is the culprit. My

neuro said that she wanted to test the other B Viatamins..she said that too

much B6 and B1 can make the nerve problem just the same. I was also

not doing well with B9... whatever that is... so I was prescribed B12 shots

every 2 weeks for 2 months and then once a month for as long as I need

them. My numbers reached the bottom of normal range and I was told to

stay on this schedule. I would be checked again..in 4 months. She also

added Inositol Capsules..1000 mg a day.

Now I talked to someone on this forum who said that injections were available

to buy from a certain pharmacy. My husband said "You call your neuro first

before doing that- I am not going to okay this" so I did.. She said that the

levels should rise slow and steady and that if I was going to self treat myself

then I was going to be dropped from her practice. She warned me that she

knows what she's doing and I am right on target where she wants me..

I can take my injections between 3-4 weeks..(never had a loading dose)

I feel exhausted, My feet are still hurting, burning, stinging, and numb as heck.

So naturally I am going to do the injections by myself...I put in an order to

the pharmacy and I also bought some on Amazon along with needles...

Am I missing a test for folic acid? Can you guys tell me what tests I need

to request? Can you tell me minium levels or numbers that I should shoot for

to be in the higher range?

My primary (GP) doctor agrees with my neuro and so does my Rheumy (I do

have RA) I just feel so crummy that I feel that I need to put my health into my

own hands. I am otherwise pretty healthy - I eat a lowfat/ low carb meal twice

a day and snack on fruits and vegetables all day long. I run almost every day

as long as I am not having a flare from RA..I am taking big gun drugs for RA

like Simponi and Avara -both kill my immune system so my body doesn't

attack my joints. Oh, and I eat a lot of grilled fish, chicken, Pork..

Please suggest for me?

[helvella]

B9 is the name sometimes used for folic acid.

umm.edu/health/medical/altm...

Rod

[Hidden in reply to helvella]

Thanks I am just finding this stuff out. I appreciate the link.

I have no point of reference except what you guys and girls

tell me about. Thanks.

[Hidden in reply to helvella]

Thanks again. I was taking Inositol (b9) with Advil everyday.

No wonder it's not working yet.

[Hidden]

Have a read through this, might be helpful:

pernicious-anaemia-society....

[Hidden in reply to Hidden]

Also, have you watched the documentary from B12awareness.org

youtube.com/watch?v=BvEizyp...(Not working as expected?)

[Hidden in reply to Hidden]

What the heck...I was told to take the B12 shots and

to add B9.. 1000 mg... Did my doctor make a mistake?

I am to take a multivitamin as well, I was told.

I eat totally healthy, I exercise, I drink tons of water..

I feel like I have so much in common with those that

were featured in this video. Maybe it's too late for me.

For some reason, I cannot absorb it.. I just want to go

against my doctors advice and inject myself for at

least a week or more.. I feel very strongly that I shouldn't

wait any longer...3 doctors told me not to take shots

sooner even though I am at the very low on the normal scale.

They said that it will rise after a few months of shots. .

but once a month is not going very well. = /.

I bet that my B12 is wrong because I am well loaded with

B9....Oh I'm so upset tonight.

[Hidden in reply to Hidden]

Take a deep breath Yikes, you're OK. You need to take folic acid (B9) when you're on B12, they work together. It's only a problem when they give it INSTEAD of B12, because it corrects macrocytic anaemia and the B12 deficiency isn't spotted. The documentary is pointing out that this is a particular problem in the USA because food is fortified with folic acid. But you're getting B12 and your deficiency is diagnosed, so you're OK. From an RA point of view, I'm not sure about the drugs used in America, but in the UK they commonly prescribe Methotrexate. This is a folate antagonist so people on this drug will also be prescribed folic acid. So your doctor hasn't done the wrong thing, EXCEPT in that they think keeping you at the bottom of the B12 range is acceptable, it most certainly is not.

B12 is water soluble and is excreted in urine, so a large amount of that which is injected is not retained by the body, you basically wee most of it out within 48 hours (50 to 98%). The major portion is excreted within the first eight hours. Also, there's no way of knowing how much is actually reaching cell level where it is needed. So you can see how giving an injection once a month, or once every 3 months as it is in the UK, would be a big problem for some people.

B12 treatment is not just about correcting haematological changes (anaemia, macrocytosis), or about getting blood serum levels back into the "normal" range (which is set too low anyway), but this is what doctors do. To feel well, and have any chance of reversing some of the neurological damage caused, we normally need blood levels well over 1000, not just in the hundreds. And the blood serum B12 test should most certainly not be used to monitor progress once treatment has started, it should be about symptom relief.

B12 is a non toxic nutritional supplement, not a narcotic drug. There is currently no known toxicity hence the WHO have set no upper limit. Just my opinion, but I'd rather have too much (which my body can excrete) than not enough.

Read as much as you can about this (the 2 books I mentioned in my previous post are excellent), and perhaps try and work with your doctors first, and educate them. If you were in the UK I would say show them the British National Formulary (BNF) guidelines on dosage, which allows for injections every other day until no further improvement, where there is neurological damage:

evidence.nhs.uk/formulary/b...

Obviously you use cyanocobalamin in the USA, and I don't know what your equivalent to the BNF is? Perhaps the PAS would know so you could try calling them?

You also need good iron levels so make sure you have this tested.

H x

[Hidden in reply to Hidden]

I am going back in today to show them

this stuff. I didn't even make an appointment,

I'm just walking in to talk with the nurse practitioner.

I am armed now with good stuff and I will be

getting those books at barns and noble.. today.

I talked with a friend who offered to get me the

shots even if the doctor says no. I did

have 3 of them say "NO, NO, NO...they

want to try to balance out my body so my

body doesn't just excrete it.

My family was also talking about those 5

hour energy drinks..and the ones that have the

b vitamins without the caffeine punch.. do

some people benefit from those..? I see people

using them in the gym all the time. The taste

puts me off but I would so do it if the effects

would raise up my B vitamins.

[suki65 in reply to Hidden]

hi what do you class that b12 should be ,i have the level should be 450-1100 not 150 what my doctors say and folate and iron what levels do you personally think they should be at to be healthy ? Could It Be B12?: An Epidemic of Misdiagnoses

have you read this book its brilliant

[Hidden in reply to suki65]

My honest answer? You can be deficient at any serum B12 level. The level needed to feel well is different for everyone. Could be in the hundreds for some, and in the thousands for others. It is not a great test, symptoms are what matter. Folate usually recommended top half of lab range, ferritin around 80 or 90. And totally agree, that book is fantastic. H x

[suki65 in reply to Hidden]

hampster1 what can you take from this i had my b12 done 2 months it was 276 and my folate was 12.4

2 months later after taking b12 supplements up to the day before the test and now b12 648 folate 6.4 i am feeling better no more numbness ,cramp and tingling but my left arm is still not able to move normally is it good that my folate has halved the doc is saying everything is normal

magnesium ,iron,homocystine should i have any of these checked ? thank you

[Hidden in reply to suki65]

You really need to take a folate supplement when taking B12, they work together. So it's no surprise that your folate dropped. You also need good iron/ferritin levels. And a B-complex, so the other Bs don't get out of balance. See here:

b12deficiency.info/assets/p...

[suki65 in reply to Hidden]

hampster1 thank you ever so much for this info my next lipid appointment is 22nd oct i have lots of info to ask now you have helped me in 2 messages more than what i have been told in the 2 years with the specialist

[Hidden in reply to suki65]

You're welcome, God bless the internet!

[suki65 in reply to Hidden]

this is absoulutely amazing it should be all over sites available for everyonne to watch thank you hampster1

[Hidden in reply to suki65]

You can find some more videos and info here suki65:

b12deficiency.info/

[Siang]

I was diagnosed with B12 deficiency in Feb 2012. I was suffering hair loss, anxiety, memory loss, I couldn't remember my colleagues names in work, I suffered pins and needles in my legs hands and feet. I had a loss of appetite and lost a lot of weight. Walking became extremely difficult and I ached all over my body. I put it down to stress with my job. I went on sick with stress from work and the doctor diagnosed B12 deficiency. I was given the injections immediately and every 12 weeks have a follow up injection now for the rest of my life.

My life has totally changed. Whereby I was feeling like an old lady at 50, I am now full of life, my hair is thickening and I rarely have pins and needles in my feet and hands. I cannot believe how ill I felt. Luckily for me, my doctors were excellent. I did not know how serious the condition was, I was totally ignorant to it. What is dangerous is that this illness can go undetected for years and cause so much damage. HealthUnlocked has been a great source of information for me and I thank you.

Sian G

[Hidden in reply to Siang]

I do second that! HealthUnlocked is a fantastic starting point.

[johnbarriesmith]

Sorry you are suffering , as you say you know how you feel , I have been there 33 yrs serious ill health , 20 yrs trouble free diabetes then was given G/M insulin the rest constant battle with NHS & denial .

I think they are missing something , it possible the medication you are taking is causing it , I .

have reactions to a whole range of synthetic medication , I tell them that drugs are made for shareholders not patients .

Have you thought about an independant 2nd opinion , I had to do that in 2006 , was told there was nothing wrong with me , was so ill 2nd opinion told me I had suffered Poly Glandular auto immune damage to 5 glands caused by G/M insulin , P/A , Pancreatic Insufficiency (the cause of the 229 insulin coma`s) ,Hypothyroid , Adrenal impairment . The NHS knew what was wrong but commercial ties would`nt let them , Novo Nordisk owns the Diabetic Service.

Because of the Hypo thyroid they started giving me drugs for bone density , I reacted to 4 different ones the last Residronate caused a lump on my left nipple NHS confirmed it , refused any more , take Vit K2 instead .

So if it is auto immune your battling do be very carefull NHS are`nt very good at that .

You will have to fight your own battle question everything keep a diary for with dates for new medications to relate symptoms dates .

Best of luck Kindest Regards Barrie

[Hidden in reply to johnbarriesmith]

Good to know this. RA is one tough auto-immune disease, yes.

I am betting that a medication is definitely causing my deficiency.

It's noted that B12 doesn't get absorbed well in patients who are

treating the symptoms of RA. You have a good point by telling

me that I should do as I am told but keep a diary.

[suki65 in reply to johnbarriesmith]

excellent exactly what i have a diary i cant believe what medicines did to me but now i am changing what statins did and i will never take them ever again

did you ever try getting your insulin up and running naturally i have with mine i eat for 7 hours a day and the rest of the time i drink only sugar free or water this then makes your body use insulin properly by working on the fat in your body rather than any sugar you have left from over eating ,this is also helping keep my cholesterol levels down from 12.1 to 6.2 i am so pleased .

i now take b12 supplements ,vitaminD with calcium ,ubiquinol and opti-omega 3 s these are all repairing the damage that the so called medicines did

take a good look at b12 and vitamin d e.g docs say b12 should be between 150-900,rubbish 450-1100 is more like it and vitamin D they say above 25 also rubbish above 50

[Hidden in reply to suki65]

I am not anywhere in the range, even the low that you provided

as what they say is normal.. I cannot take calcium. I had a

big spill of it shown in my blood.. I know what that means..

good chance of bone cancer in my future.. but I do think

that the tests were some kind of fluke.. I am back to normal

blood draw without the proteins and calcium in my blood.

I still can't have the calcium..as a supplement.

For me, I am a super healthy eater.. I have my foods down to

a science.. I eat to live rather than live to eat.. I have some

amazing recipes that I use to get it all in during the day.. My

body won't absorb vitamin B12 through the gut and neither

will it absorb vitamin D.. that's why I am supplementing those.

Injections are my answer.

Fish, nuts, vegetables, fruits, little red meat are the staples in

my diet.. good thing that I love fish.. I use spices as they

contain much more than just good flavor to my food.. the only

one that I hate with a passion is Curry.. can't deal with that.

What is it suki that you have against statins? That is one subject

that i am in the dark over.. I have zero information on them but

millions of people are taking them.. some people that I love

are taking them... I am interested in what is bad about them =)

I mean this in a serious question...(smiling, nice, ears open)

- it sounds so bitchy since you can't see my face or hear my voice.

sorry about that... =))

[Hidden in reply to johnbarriesmith]

Oh yeah.. I have 4 doctors on board -all specialists who must

agree before treating me. My Rheumy, My Hematologist, My Primary Care Dr.

and my crabby Neurologist She-Rah Dr. I would think that it would be

enough to cover my bases. I have so many because of that calcium spill that I had indicates that bone cancer isn't far off.. RA doctors work with every single doctor and NOTHING gets by their eyes or opinion.

In the USA states.. the networks are connected so every doctor who ever treats me including the dentist..can look who's treating me for what and

they also have a connection to see which medicines I am on. I am positive

that even my Chiropractor was on the network.. My chemist/ pharmacy

does communicate with my doctors for me..they send for refills and they

can also relay messages to me from my doctor...like- before we can refill

this prescription, you need to have labs done...etc.

Not every single part of the USA has that Network but I do.. my insurance company set it up to be that way. I like it a ton..that way tests are not repeated and I get new information every time I go in...I still prepare madly for my doctor appointments. I print out latest lab works, medications that I am on and what treatments I already tried, and lastly..any interactions with the meds that I know of.. I put it right on the doctors desk so he/she doesn't have to look through tons and tons of past tests...(sometimes they do)

Every doctor agrees that I need to raise up the level b12 more slowly

but I am sick of feeling low and crappy..so I am taking the b12 shots

now and I am feeling better already after a quick inject last night. I will

do injections on my own every week... not any sooner.. and I added the

b12 5000 mcg. sub-lingual. I am making the tablet melt under my tongue

to last 30 mins or longer.

I do have that diary going..thanks for reminding me to take it along with me.

I am leaving for a few days..I need to.. haha. We are 3 days into the month

and it's been long already.

[Hidden]

Oct 14th, I am set up to have all of my vitamin and mineral levels tested.

My doctor decided to start it over again.. I brought in a bunch of these

articles..first he told me that my levels were rising very slowly but very

steadily. I finally just came out and told him that my symptoms are

so bad that I am having trouble running, the pins and needles have me up

at night and I am sick of it...so much so that I will buy the shots b12...

take whatever supplements that I need to after the testing..I am going to get

the levels up. I am finished feeling like I do..I'm dragging my butt around..

it's like pulling a long train behind me.. so now I just wait.

[suki65 in reply to Hidden]

do you take vitamin D with calcium also i have found that taking these and b12 supplements are helping me

[Hidden in reply to suki65]

Opps... please read above.. thanks for the tips=)

[Hidden]

Who's this clown John bazzymore no wonder your down talking to this clown bloody heck Karen ¥¥¥¥¥¥¥¥¥

[Hidden in reply to Hidden]

tsk tsk.. ah hello?

[Jill60 in reply to Hidden]

What you said is unfair. His info will help others

[Hidden in reply to Jill60]

My comment was in relation to what was said by SirLeonard,

Not by Sir johnbarriesmith I do agree with all of my heart that

what Sir John said is going to help others out. =)

I did address the issue with him by private message since

someone interfered. Thank you for sticking up for him. =)

[Jill60 in reply to Hidden]

Oops yes I agree with u, that's what I meant, the comment was for the person slagging off sir johnbarriesmith....unfortunately, my reply went to u and that other person, so I tried twice to do this, but still showed your name, anyway, soz but I had to say something x

[Hidden]

I did as well.. pea shooter peas and paper airplanes at Sir Leonard20 for

the comment..don't worry,I shall throw my shoe at him..haha.. He's a good-shiiiiet,

he likes to rip on me for fun..but again, I do apologize to sir johnbarriesmith for

sir leonard20's intrusion on our recent conversation.