1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

I need some help regarding B12 self injections

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by PDPJ, Jul 16, 2010.

  1. PDPJ

    PDPJ

    Messages:
    13
    Likes:
    0
    I'm at a loss knowing what to do.

    I've had 2 critical health situations in the past 3 months putting me in the hospital through the ER. Just prior to this, I had some extensive labs done at my request due to health issues for the past 3 years. I just knew after all I've had since then, that I had to be deficient somewhere and sure enough, I am/was.

    My B12 was 148 on April 15th and 280 on June 7th, 2010, not NEARLY what the level should be ! Reaching the 280 was by taking 2000 of B12 subligual a day. My PCP said that clearly I was not absorbing it as I should be and that I should take B12 shots.

    He said for me to have 1000 every 2 weeks. I feel this is simply not enough often enough. At the least, I thought I should be taking 1000 a day.

    Another source has suggested to me that I take 10000,cyan daily. If this is a tablet form, I don't think it's going to be any better than the sublingual method.

    My Questions are:
    1. What is Cyan?
    2. Is Cyan available in injectable B12?
    3. Do I even want to take *Cyan* ?
    4. What daily dose might be a reasonable one to raise my levels to at least 900-1000?
    5. If I take a large dose daily, should it be divided up in segments of say, every 4 hours or is it ok to take a large dose at one time... will the body use it or toss off most of it.

    I'll have more questions but let's see what I can learn from this post.

    Thanks in advance. I'll appreciate whatever help I'm given.
     
  2. dsdmom

    dsdmom Senior Member

    Messages:
    390
    Likes:
    45
    I do self injections and think that 1000 a week wouldn't be enough. I do them every other day and think I use methyl. i'll have to check. But I have even gone over 1000 to 1500. And I do it all at once, not in segments - I couldn't handle sticking a needle in me more than once a day!
     
  3. PDPJ

    PDPJ

    Messages:
    13
    Likes:
    0
    What is Methyl vs Cyan? I'll appreciate your checking.

    I'm a diabetic and am so used to sticking myself multiple times a day, along with doing the finger prick as many times, so I'm not at all bothered by how many times I'd have to inject myself.
    I do wonder though if taking large doses all at once might not have me bouncing off the walls :D LOLOL
     
  4. boomer

    boomer Senior Member

    Messages:
    143
    Likes:
    6
    Where is the injection done - into the thigh?
     
  5. PDPJ

    PDPJ

    Messages:
    13
    Likes:
    0
    I do the B12 in the upper arm and the insulin in the abdomen.
     
  6. Lisa

    Lisa Senior Member

    Messages:
    446
    Likes:
    15
    Western Washington
    Hello PDPJ!

    My partner and I have both been doing hydroxocobalamin injections for about nine months now. Its 5000 mcg/1cc every 3 days.

    A few thoughts:

    Don't get the cyano injections, tabs, or anything with cyano. The cyano stands for cyanide - yup, to poison. Its bound the the cobalamin and then pops off when inside you which then makes your body have to deal with getting rid of the cyanide from your system.

    Hydroxocobalamin is a pretty good choice to start with, very easy for most people to tolerate and does the job safely. Methylcobalamin does have some safety cautions - some crash extremely hard from it while others tolerate it well. If you suspect you are a poor methylator or have a mercury body load (such as from lots of fillings or eating a lot of fish) then you may want to skip it as methylcobalamin can easily mobilize mercury from stored tissue and allow it to pass the blood brain barrier.

    B-12 shots done IM should be done in the hip area, honestly I can't remember why at the moment but I did ask the nurse showing me how to do it if I could put it in the upper arm instead and she was pretty emphatic that it was a bad idea in the arm.

    When our last vial of b-12 was going to expire before it was finished, I opted to increase the amount my partner and I both had in order to get it used up. Raised it by 10%. Seemed ok (though it did hurt a bit more due to the amount of fluid each injection) but then after a couple times of the bigger shots we both started noticing we were having a more wired effect. Sleeping less and ending up less rested all the time, unable to lay down for a nap/rest successfully, fidgety, etc. Otherwise we really didn't see much effect from the increased dose.

    If you are sensitive to chemicals (as many of us are), you can get preservative free hydroxocobalamin vials for your shots but have to get your doc to write the script for exactly that sort and then find a pharmacy that will fill it. We have to use a compounding pharmacy for ours and our normal one refused to make it without preservative for at home use (something about federal law requirements). With a little work though I was able to find a place that doesn't seem to have those same requirements applied to them (different state so maybe that is why) and we have not had any trouble without preservatives. On the other hand, with two of us using the vial at the same time it does get used twice as fast as one person alone would use it so I don't know if that would make a difference - its refrigerated between uses regardless.

    Hope that all helps!
    Lisa :Retro smile:
     
  7. Lisa

    Lisa Senior Member

    Messages:
    446
    Likes:
    15
    Western Washington
    Oh! And we use a 25 gauge syringe for the injections.
     
  8. Karin

    Karin

    Messages:
    92
    Likes:
    5
    I do one injection every three days of methylcobalamin 3750 mcg in the fat of my buttock. Injection in the buttock fat, close to the surface, ensures that the B12 leeches slowly into the blood stream over a course of 3 days. If it is injected somewhere else or too deep, it goes into circulation too fast and is eliminated in urine (signs for that would be pink urine). I do it easily myself, not painful.

    The 'methyl' form of B12 has only been available for a few years. Some believe it is more bio-available since it is already methylated. It can bypass a blockage in the mthylation cycle, where B12 and folic acid cannot be used effectively by the body, leading to deficiency down the cycle. Supplying the 'methyl' form of B12 bypasses the problem.
     
  9. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    758
    B12

    Hi, PDPJ.

    I can't give individual treatment advice unless a physician is involved to evaluate my suggestions. However, I can give general information. Given that you have some serious health issues, it is important that you check with your physician before acting on any of the information below:

    When you refer to "cyan," I presume you mean cyanocobalamin, which is the main commercial form of vitamin B12, because of its long shelf life. Most common B12 supplements are made of cyanocobalamin. When the dosage is in the range of the RDA for B12, which is a few micrograms per day, most people do not have a problem with cyanocobalamin. However, when the dosages get up to thousands of micrograms per day, there is a possibility of cyanide toxicity in some people, if their body's four pathways for detoxing cyanide have become depleted. I consulted on one case of CFS in which this occurred, and the person had to take high dosages of hydroxocobalamin (which will bind cyanide) and be given oxygen by mask in order to recover.

    The normal way that B12 comes into the body is that it comes in with food, and the acid in the stomach separates it from protein in the diet. It is bound by R protein (haptocorrin), and passes into the first part of the gut (duodenum). The R protein is broken down in the gut, and intrinsic factor, also made in the stomach, binds to the B12. In the latter part of the small intestine (the terminal ileum), the intrinsic factor bound to B12 is absorbed into the cells lining the gut (enterocytes). The B12 is transferred to transcobalamin, and is exported into the blood. The cells of the body have receptors for transcobalamin, and they take in the B12 bound to transcobalamin and utilize it.

    Some people have problems with this process at one stage or another. There are several ways to compensate for this. Large dosages of B12 can be taken orally, and about 1% of it will be absorbed by diffusion in the gut, without the intrinsic factor process. However, if there is a major deficiency, or if the problem is with the transcobalamin, then this approach will not do the job.

    B12 can also be taken in liposomal form, which will assist in its absorption. It can also be taken transdermally. Sublingual administration is very common, and usually very effective, if large enough dosage is used. B12 can also be injected intramuscularly. In the DAN! approach to treating autism, methylcobalamin is commonly injected subcutaneously, in order to smooth out the blood levels over time. Some people with CFS are taking several milligrams (several thousand micrograms) per day of hydroxocobalamin, methylcobalamin, and/or adenosylcobalamin (dibencozide). In my protocol for CFS, I favor hydroxocobalamin. If you read the main B12 thread in this forum, you will find a lot of information, as well as different views about how B12 should be taken.

    If large dosages of B12 are taken sublingually or by injection, it is best to spread the dosage out over the day, because at large dosages the binding capacity of transcobalamin is exceeded, and free B12 in the blood is water soluble and will be filtered out by the kidneys, making the urine pink or red. By spreading out the dosage over the day, the average blood level will be higher, and more B12 will diffuse into the cells.

    The usual serum B12 measurements used by conventional physicians does not give an indication of whether the B12 is being used functionally by the body in the proper way. It will show if there is a gross B12 deficiency, but if the result is in the normal range, one could still be functionally deficient in B12. It is better to get a urine methylmalonic acid (MMA) measurement for this. If MMA is high, it is an indication of functional deficiiency of B12.

    I hope this is helpful.

    Best regards,

    Rich
     
  10. mhj

    mhj

    Messages:
    21
    Likes:
    8
    Norway
    Hi ;)

    I use 10mg/2ml hydroxycobalamin injection once a week. The B12 shot is injected intramuscularly in mine buttocks by my boyfriend (lucky him :D).

    B12 in mine treatment-protocol due to two reasons:

    1. Prevent B12 deficiency because of malabsorbtion in the gut/small intestine. Tablets will do no good.

    2. Most important that B12 chelats peroxynitrite. Big doses and 1 inj/week for detox.

    Peroxynitrite: http://en.wikipedia.org/wiki/Peroxynitrite

    -----------------------------------------------------------------------------------
    You have to make sure that yours B12 deficiency is not because of Pernicious anemia.

    http://en.wikipedia.org/wiki/Pernicious_anemia

    Some cases of CFS is probably misdiagnosed because of PA.

    ---------------------------------------------------------------------------------------
    What i can see, it seems that CFS protocols recommend hydroxycobalamin.......

    Why is so, see post by Rick.

    Regards

    ;)
     
  11. PDPJ

    PDPJ

    Messages:
    13
    Likes:
    0
    LOTS of good information you've all given me ! ~ Thanks.

    I was given a script from my PCP/internist/endro. for 1000 mcg of cyanocobalamin to be taken every 2 weeks. He is well versed on my conditions (as well as being frustrated with them) so I'm not doubting his judgment about the type of B12 he is prescribing. BUT I do disagree with only taking every 2 weeks.

    My plan is to obtain B12 in a legal,reputable and reliable place that does not require an Rx. Why? Because I will be taking more ( likely 1000 per day for about a month) and then taper off either the amount or the frequency. The script my Dr. has given me won't cover me for the amounts I'm planning on taking so I have to use a source that will provide the quantities I'll need.

    I thought this would be a simple objective ~ thinking that since B12 is water soluble, my system would just toss off what isn't used/needed. I didn't realize there were *kinds* of injectable B12. I sure as heck don't want to get myself into trouble but I also want to get my levels up ASAP so that I can have a particular surgery done before the end of the year... hopefully, by the end of September.

    Would it help if I posted my latest lab results. ( Oh, pernicious anemia has been checked for. I don't have pernicious but I am anemic.)

    I just tried attaching the lab results but files are too large. I'll give the photobucket links to the files:
    These are for April 6 hours before I was admitted through ER for 1/2 of body's blood loss.
    [​IMG]
    [​IMG]

    These are for May, AFTER another critical ER admission for a massive UTI infection that went into the blood (sepsis)
    [​IMG]
    [​IMG]
    [​IMG]

    So now you know more about me than you ever wanted to know :tongue:
     
  12. mhj

    mhj

    Messages:
    21
    Likes:
    8
    Norway
    Hi ;)

    You are probably right about putting labs test online is crazy stuff for us "nerds" :D but is a good way of learning new topics.......

    So, If you allow me? i see that you really got som issues.......

    1. Poor regulation of blood sugar levels.

    2. Ya, not PA, but anemic as you said. From the testresults mybe: Microcytic anemia
    http://en.wikipedia.org/wiki/Anemia

    3. B12 deficiency because of anemia and malabsoption/malnutrition. See you have D-vit deficiency also, due to malabsoption.

    4. Are you developing Diabetic nephropathy? http://en.wikipedia.org/wiki/Diabetic_nephropathy

    5. High levels of Eosinophils is a concern, particularly with low s-albumin. That may indicate parasitic infestation, and you are anemic as well.

    http://en.wikipedia.org/wiki/Eosinophil_granulocyte

    What is your doc saying about that?

    6. B-12 injections. Ya think you can manage by your self. Discuss with the doc to take it at least once a week. Set it subcutane in abnomen. Still Metylcobalamin is more effective than cyan......

    Good stuff: no liver problems, urine pH lever are fine (ideal level 5,4 - 5,8), no bile problems and no Hep-infections:Retro smile:

    Take care and good luck ;)
     
  13. JAH

    JAH Senior Member

    Messages:
    283
    Likes:
    161
    San Jose
    Have any of you injectors actually noticed a benefit from the b12 injections. I just talked this over yesterday with my doctor and am considering it. (I have done it in the past with no result, but that was before the whole methylation treatments were developed)

    thanks,

    JAH
     
  14. PDPJ

    PDPJ

    Messages:
    13
    Likes:
    0
    5. High levels of Eosinophils is a concern, particularly with low s-albumin. That may indicate parasitic infestation, and you are anemic as well.

    http://en.wikipedia.org/wiki/Eosino...this was dealt with when cauterized). [edit]
     
  15. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    407
    Upstate SC, USA
    I started out using cynacobalmin(?) 1000 mcg / ml 2x a week subQ and after three months my serum levels had only increased about 30 - 40 points. I was changed to hydroxycobalmin(?) 3000 mcg / ml 2x a week subQ and I changed to a very small and short needle (30 ga. x 3/4") and in 3 months it had gone from 220 (approx.) to 595. I knew it was up because I could physically tell. A compounding pharmacy made my hydroxycobalmin and I had asked the pharmacist about methylcobalmin injectable and she said it was very, very senstive to environment. As in that it had to kept at a steady temp below 80 deg., not exposed to any type of light for a good length of time and it had a short shelf life. She didn't say she didn't make it, but strongly suggested the hydroxycobalmin first. I still take the hydroxycoblamin, but I only take a .5 ml 1 time a week and my level stays steady around 500 (Labcorp).
     
  16. PDPJ

    PDPJ

    Messages:
    13
    Likes:
    0
    I wonder why my PCP isn't more flexible in what he's prescribing for me to do. I know he doesn't want me taking the B12 on a daily level so I won't be able to get a script from him for more than he has already given me... let alone having something compounded.

    I don't know if this forum allows what I'm about to say. I suppose if not, a mod will edit it out. I feel I am being forced to have to go to Canada to get the amount of B12 I feel I should be taking. I have learned that I don't want cynacobalmin, which is what is being prescribed for me, and that what seems to be better is the methylcobalmin. Maybe because of the cyanide is why only injectable every 2 weeks?... to avoid a toxicity problem?

    What is the difference between the hydroxycobalmin and the methylocbalmin? I need to be at and maintain a level of at least 1000. Why are you staying at a 500 level?
     
  17. PDPJ

    PDPJ

    Messages:
    13
    Likes:
    0
    Re: Vitamin D

    I've been doing some research on the Vitamin D deficiency you mentioned.

    Steroids
    Corticosteroid medications such as prednisone, often prescribed to reduce inflammation, can reduce calcium absorption [93-95] and impair vitamin D metabolism. These effects can further contribute to the loss of bone and the development of osteoporosis associated with their long-term use [94,95].


    I take prednisone for the non stop itching I've been having, however, I've also taken it, in much lesser quantities for years, but with this itching, I've been taking anywhere from 20 to 40 mg a day.

    Since V D is not water soluble, how much do I need to be taking in order not to create a toxic situation but enough to get my levels to where they should be?
     
  18. zoe.a.m.

    zoe.a.m. Senior Member

    Messages:
    361
    Likes:
    17
    Olympic Peninsula, Washington
    Hi PDPJ,
    I think this may be as simple as MDs are simply not taught about vitamins, minerals, herbs, supplements, etc. I saw a nationally-recognized internist who prescribed the cyan B and who prescribed 1000 mcg/month. I asked her why not the methyl form and she said she did not know that another B existed! It was my local PCP's idea to do shots weekly and then go to monthly.

    I saw a new doctor--an environmental physician--who asked me if I wanted a script for up to 5000 mcg/3xweek of B12 (whichever form I preferred). So, there are doctors who certainly are open to giving this kind of nontraditional prescription. I do not know where you live, but you might check the physician listings on this sight to see if someone near to you is noted as a "good" doctor. Many doctors/naturopaths who prescribe outside of the norm are available to do phone consults if you live far away. Someone mentioned on page 1 that Key Pharmacy in WA state makes injectables to order and I have received my first script from them and would recommend them highly.

    You could look at the beginning of the B12 (the hidden story) thread to read about why Freddd recommends methylcobalamin and Rich Van K's paper which speaks to using hydroxocobalamin is available on this site (or at least linked from this site). I can say that their opinions differ on this and it's best to read what you can of the B12 thread to assist you in making your own decision. For myself, there was a pretty dramatic change in how I felt after 2-3 wks and likely before my level even reached 500, so you may want to try a plan for several weeks or a month and go by how you feel.

    I, personally, have switched to the Perque B12 hydroxocobalamin (sublingual) because of issues pertaining to something that had changed with me, though I can't be sure it is/was the B12 shots. After minimal reading, I decided not to take one more shot of the cyan B. BTW, after 5 shots (about 6 wks) of 1000mcg cyan B12 my level had gone from about 240 to 570, so it was working apparently--though there is much more to this than just a basic level.

    Because I have a system that tends to get very rough side effects from any meds, supplements, etc., I decided to use the B12 that I thought would be least likely to cause another CNS upheaval: this may prove to be incorrect, but it is what I am doing for now.

    Read what you can about the Perque B12 if you like, as it's supposed to be about 95+% as bioavailable as shots. It would be one way to be able to control your frequency and dosage (there are 100 tablets of 2000mcg B12 per bottle). Personally, I think the shots are the best thing when a person is deficient, but you might be able to supplement your shots with sublinguals also. I am no expert on these matters but there are a few people around (already posted on this thread) who are and there are many ways to proceed. Also, my first 4 shots were IM and the next 2 were subcu. The subcu are far less painful.

    My D levels have been abysmal: 12 after a year's supplementation of 2-4000iu/day. I switched to another D3 (fat-based) and saw my level rise to about 30 in 8 wks and by doing 3 wks at 10,000iu/day and then 5000iu/day afterwards. It's best to have some guidance on this IMO. A nutritionist I saw (a good one, not a run-of-the-mill USDA-type) spoke to the importance of a food-based supplement. These are expensive and harder to find. I can tell you my PCP said she has prescribed as much as 50,000iu/week for severely-deficient patients. The new standard for D for everyone is supposed to be 2000iu/day--just saw this via Dr. Oz's show with an "expert" in the field on who corrected Oz's 1000iu/day figure. So I would think you would be looking at above 2000iu/day for certain.
     
  19. PDPJ

    PDPJ

    Messages:
    13
    Likes:
    0
    Thanks Zoe... lots of helpful information ! I'll read that thread. I sort of jumped around in it before, but now I'll make a serious effort to read all of it.

    My PCP IS a GOOD doctor and as his also being an internist and endocrinologist, I would think he would be well versed on supplements etc.... especially B12. I've been seeing him for well over 25 years and he's never led me wrong. I really dislike engaging someone else to deal with the B12 issue, but I may have to if I can't get what I feel it is I need.

    Likely, before the end of the year, I'll be having a surgery that will create many malabsorptive issues so it's really important, in view of my already unhealthy state of being, that I get myself in the best physical condition possible in order to survive not only the surgery, but the 6 months post surgery.

    Oil/fat based vitamins will not work for me after the surgery so I'm looking into dry forms to replace the typical fat based ones.

    I'm sure after reading the B12 article, I'll have questions/comments, so I'll be back !
     
  20. taniaaust1

    taniaaust1

    Messages:
    8,265
    Likes:
    5,219
    Sth Australia
    Im a great believer in those with CFS trying B12 injections (not cyanocobalamin in the levels we often need it in). It was B12 injections which made my CFS start to improve (I'd tried so many different supplements which didnt do a thing before that). My blood tests didnt show I was deficient in B12 thou.

    I take 1000mcg of hydroxocobalamin twice weekly.

    When i first started to take it I tried it once a week, I herxed on it the first two times I took it but on the third time I took it I noticed it was helping clear some of my brain fog and I actually found my memory issues improving.

    As i noticed the good effects on my mind wearing off by about the 4 day after taking it (in my case I could easily tell when injection affects were wearing off as my memory would start severely degerating again), I then started taking it twice weekly. Since that time my CFS has slowly gotten better and better (i dont know if that is due to the B12 but the B12 is certainly responsible for my memory improvement.

    After 2 years on the B12.. I can now stop it for 3 weeks or so and not notice my memory and mind fog regressing. (Ive actually as I dont know if i still need it, have considered stopping taking it).

    I dont know about other countries but in Australia one can get it without a script, if one just causally asks for it (as long as one seems to know what they are doing, they will not give to one if one appears like they dont know what they are doing). So try just asking for hydroxocobalamin ampules for injections. (then i get free needles etc from the place which give out free ones to anonomous drug addicts etc. I get my needles this way free by the box :) .. many chemists will not sell needles without a script). I too had the issue with no doctor supporting me in doing B12 injections but are so so glad i took matter in my own hands and done it anyway. (Otherwise i would still be in the same mind fog, severe memory loss state that i was in years back).

    My partner usually does the injections for me in my butt.. when he isnt about I'll do it in my thigh.
     

See more popular forum discussions.

Share This Page