B12 Injections

[kkeg75]

Hello everyone. I was diagnosed Celiac a few months ago and at the same time was told my B12 was low (200) and I should get injections. I had thought my vitamin D was low because I was miserable all winter. I was uncontrollably passing out at my desk at work, even if I slept 10 hours a night. I was scared to death I was going to fall asleep while driving. I have an hour commute to work every day. I get this dizziness in the back of my head, and have zero energy, like I can't even move my limbs. It's way beyond just tired. 

 

Anyhow, I started the injections once a day for a week (well, 5 days), then once a week for 4 weeks, then once a month for "several" months before they will re-check levels. I had actually starting taking they methyl b12 sublinguals since they couldn't get me in to do the shots right away. A couple of weeks into the shots, I started to feel human again!!! No more dizziness, I was awake the whole day, and could exercise!!! Until it got to the one month apart injections. By the time one month hit, I was pretty much on the floor. I could not function. I went last Friday and got the shot. I told the nurse that one month is too long and she proceeded to tell me how she gets tired in the afternoon too. (what??????? It was 9:30am anyhow!). She scheduled the next shot for one month . I felt slightly better Friday night and over the weekend, but it's now Wednesday and I'm feeling dead again already.

 

For those who have done this, what was your schedule like? Was a month between shots too long? Should I push to have my levels checked? I feel like it's not sticking with me. Any feedback would be greatly appreciated!

[mamaw]

 I  take B-12 shots  weekly  &  keep my levels  close to750/  800  I  retest  with blood work every three  months....

[kkeg75]

Thanks mamaw. I bet i'd feel like a million bucks if I could them weekly!

[cyclinglady]

What are the results of you lab tests after starting the b-12 shots? I would think your doctor would base your injection schedule and dosage on lab results and the fact you have celiac disease and not just because normal procedure dictates it for the average patient.

[kkeg75]

I haven't been tested since they started the shots. I was around 200 when they tested it to begin with and they said they wouldn't test me for several months, so I figured they'd go by how I feel. Apparently not. I think that's a ridiculously long time to see if it's bringing my levels up!

[cyclinglady]

Are you still taking the sublingual supplements? That might help.

[kkeg75]

Yes. It seems I have to take at least 3 (per day 1000mcg) for any effect. Does that sound right? I have no idea what the dosage of the shot is. I might have to order these things in bulk lol.

[mamaw]

From my  lab,  range  runs  from 250  to 850  , so a very  wide span... if  anyone  is in  the  range  they are  normal range. For  me  that  is a  BIG  gap so I  complained  that  I  felt  dead  in the water  &  I needed  more  because  as  soon as I miss  a  shot  my level  drops  fast  & I'm back at  260... SO now  the  doc  lets me have  the  shot weekly  & I  monitor  myself  for two months  &  then  get  blood work  every third  month....I've  been  doing this  for  over  two  years  &  at  times  I can  now  skip  &  do  bi- monthly  ...& maintain  my  750-800 level.....

[kkeg75]

I'm thinking I definitely wasn't ready to go to monthly. I felt as bad as I did before I started the shots, so probably back around 200 :/. I think the problem is that I need to talk to the doctor somehow, not just the nurse. The nurse tends to blow me off and talk about her own problems instead. 

[mamaw]

Can't  you speak to the doc  if you schedule to see   him?  Or  you could also  send  a private letter  just  for him..

[Galixie]

Do you know which form of B12 the injections are? Cyanocobalamin is the form most often used in the US and is usually given once a month. Hydroxocobalamin is the form more commonly used in parts of Europe. Generally speaking, cyano works more quickly but is not retained as well in the body as hydroxo.

 

Methylcobalamin is the newest form of B12 to be developed. It is not commonly in use by doctor's offices, although some are starting to warm up to it because it is the "active" form of B12 and doesn't require as much conversion in the body as cyano and hydroxo do. (But it's also more expensive than either of the other kinds and is not mass produced as an injectable the way the others are.)

 

Cyano manufacturers have stated that between 50%-98% of injected cyano is lost (excreted through urine) within the first 48 hours after an injection. So, if you received a 1ml injection, which is equal to 1000mcg, two days later only 20-500mcg remain for your body to use for the rest of the month. A typical person needs about 6mcg of B12 a day to replace what is naturally lost.

 

Another complication that you may or may not have, has to do with how B12 is recycled through the body in the methylation cycle. B12 is such a complicated molecule that the human body has developed a really complex system for dealing with it. If anything anywhere in that system messes up, the B12 never reaches its destination and is never used. That can sometimes mean that a bunch of inactive B12 is floating around in the blood, never able to be turned into active B12 for use. That is one of the reasons that tests of serum B12 after injections have been given are not considered reliable. There is an 'active B12 test' that has been developed but it is not widely available and is probably not covered by insurance. Once a person is on injectable B12, their treatment should be based on symptoms.

 

It would be a good idea to talk to your doctor and ask that your injections be based on your symptoms (in other words closer together than once a month) because you shouldn't have to suffer needlessly. There is no known upper intake limit for B12. That means you can't ever overdose on it (unless you have a pre-existing kidney condition/failure). Many doctors are not very knowledgeable about B12 and B12 deficiency. Some mistakenly believe that it is possible to overdose. If your doctor turns out to have that mistaken belief, ask him or her to provide you with scientific documentation to back up their belief. They won't be able to because it doesn't exist.

 

Unfortunately, getting B12 deficiency correctly treated is a bit of an uphill battle. Keep in mind that B12 works best in tandem with other nutrients such as folic acid and iron and that large amounts of B12 can lower potassium levels. Ideally everything would be measured and brought into correct balance. Realistically, sometimes you have to choose your priorities.

 

I'm sure the nurse means well, but she is probably not well-informed on the subject and you should really be talking to the doctor about increasing the injections. The nurse won't have the authority to do that.

 

One other thing to keep in mind, which is not a fun thing to think about, is that it is really important to know your limits when you are getting B12 shots. It is very tempting, once you finally have a burst of energy, to take as much advantage of it as you can. However, if you go full out, you are likely to overdo it and use up the B12 more quickly. Things that make your body use up B12 more rapidly are: stress, exercise, alcohol, and sugar.

 

Are you familiar with the Spoon Theory? It's a fairly good explanation of how you have to keep track of things in order to keep from running out of B12 before the next injection: Open Original Shared Link

[Lisa]

 I  take B-12 shots  weekly  &  keep my levels  close to750/  800  I  retest  with blood work every three  months....

Wow, that surprises me, after so long.  Do you have other concerns mamaw?  After diagnosis, I received  shots once a week for 4 weeks, then once every four weeks.  I was retested and no longer need it.  I do take pre-natal vitamins that are high in folic and b-12, daily.

 

At my worst, I could not walk a strait  line, nor complete a sentence.

[mamaw]

Lisa, I do have other issues besides not being to keep B-12 in my system... I drop off rapidly, been like that most of my life....I developed angio lymphatic edema a few years ago from Levothyroxine & for nine months I was nothing but a BIG mess from the neck up.. plus the soft tissue inside my mouth was raw & bloody most of that time...I went to two different Immunologists for help both said I was one of their worse cases ... Tried many things to combat this issue...then I read an article about B-12 possibly helping with my issues. I took to doctor & he said worth a try even though he never heard of it prior to the article. Well, it helped so much & the doctor said this condition would never totally leave me that for who knows what reason it could rear it's ugly head up.. The outer face & neck swelling is long gone but I still get swelling , sore soft tissue of the inner mouth at times.. plus very dry... they tested me for other dry mouth issues but all negative. The B-12 keeps this mess at bay....

After the dr. seen how well I responded he put his family member on it as well for a heredity form of edema....

[Alwayssomething]

I started out weekly for 8 weeks then monthly and have been doing that for 2 years.  My B-12 was 192 when I started and with last blood work almost 6 months ago I am barely 400.  I can tell when I am due my shot by my body not a calendar, and would love to go to every two weeks, but my dr will not let me.  I did take a 6 month break to see if my body could maintain my B12 and it could not.   

 

My only piece of advise is whatever you do DO NOT have your blood drawn close after just getting your B12 shot, do it a few days prior to receiving it.   It will skew your numbers if you have a new shot in your system.  

[kkeg75]

Wow. Tons of great info there. Thank you!!! Sorry it's taken me so long to reply to things. I sent a message in the portal to the doc about it being too long between shots. This is the second time I've put it in writing and said it once in person. I also asked to do the injections at home, since they told me initially, twice, that they would not charge me the copays, and when I got a bill for hundreds of dollars they refused to fix it. Now I feel like I'm battling them twice.

 

Anyhow, the injection they sent to the pharmacy was the 1ml of cyano, but I swear the amount they were giving me at the docs was 2 or 3, it was definitely more. Now I feel even further cheated. I gave myself the shot Friday, and this time noticed NO difference. I've been taking the NOW foods methyl lozenges, and that doesn't seem to be having much effect at all at this point, even if i take 5 a day. I'm stuck on the couch today. I cannot function like this. I've been in tears several times today. 

 

I do run, so I'll keep the exercise thing in mind. I'm also struggling with diet. Aside from no gluten, soy, or dairy, I apparently can no longer tolerate sugar. It's causing extreme bladder pain, urgency, etc. (gluten does the same although not even this bad!) Bananas are ok so far. Tomatoes are also bothering me (IC maybe?) and coffee if I have more than one cup. I also can't eat anything acidic or spicy because I'm still dealing with gastritis. I still haven't figured all of the gastritis triggers, let alone the bladder. I have never been so frustrated with my own body. I'm struggling mentally as well. My brain has no energy either. I feel like a nut case. 

 

Thank you Galixie for the very informative post. I'm still trying to "digest it all". (pun intended)

[kkeg75]

Wow, that surprises me, after so long.  Do you have other concerns mamaw?  After diagnosis, I received  shots once a week for 4 weeks, then once every four weeks.  I was retested and no longer need it.  I do take pre-natal vitamins that are high in folic and b-12, daily.

 

At my worst, I could not walk a strait  line, nor complete a sentence.

This is about where I'm headed! I went grocery shopping yesterday and ran right into 2 other peoples carts with my own. That has never happened before. I can't even tell you how/why. They were in clear view.