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.
• in reply to
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:
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
• in reply to
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.
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
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
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
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:
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
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.
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 .
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
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.
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.
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
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.
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I'm new and have a question about folic acid
I finally saw the neurologist! Well, more accurately I saw his registrar! 
When do you reduce frequency of SI?
