I was diagnosed with PA about 12 years ago but suffered much longer than that. I am currently 37yrs old. I take B6 and Methyl-folate daily also. I am still learning and want to share my most recent experience in the hope it helps some of you. This can be a very frustrating and mysterious illness to deal with.
So my life is very high stress and can be physically draining. Lately because of the growing season and several high stress situations I have been struggling with many illnesses. Random things like my kidneys hurting, my bladder hurting, headaches, dizziness, arrhythmias and high heart rate, a numb toe, and painful to walk on foot. Just random wide-spread bodily illness and pain. I take 2 - 1ml shots of hydroxocobalamin a week. I was never given loading doses at any point in my life, but was put on 1 shot a month and than overtime and with a more understanding Nurse Practitioner I got more doses of the right type of B12. She put me on 1 dose of Hydroxocobalamin dialy. Because of the lock downs I went to 2 doses weekly out of fear I may not be able to get B12 and rightly so as I did have a dry spell twice where I could not get my prescription filled.
Recently I just learned about how the body does store B12, but with stress or the use of alcohol, or physically draining activities the bodies stores can be depleted. No one told me this nor have I had the time to research the topic. Well I don't think my stores were ever restored because I never felt 100% well. So recently after hoarding B12 for a while I have began loading doses after an extreme stress event sent me to the hospital and kept me sick for many months. I am currently taking 5 - ml shots a day just to keep me upright. As soon as the spasming, dizziness and heart palpitations start up again I take another shot. It is a lot, but after 5 days of this I am starting to see a noticeable change. I have been trudging along just pushing through wondering on a day to day bases if my kidney or heart are giving out or if I'm not taking enough probiotics. When in realty I just needed more B12. I don't understand why I need so much, but having so much is the only thing helping me. I hope this will not be the case after every bout of stress, but time will tell. So for those of you still not filling well; if your like me for whatever reason you may just need a ton more B12 than anyone would have thought.
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PaintLadie
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I wondered if your doctors had checked your potassium levels.
If you're in UK, threads below might be worth looking at.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Apologies, I am in the USA. The medical system here is in a very poor state and not geared toward health or anything other than supporting the pharmaceutical industry, and is also very expensive almost unaffordably so. I have also had a hard time getting ahold of good information that is not generic in nature as you have to be licensed to access much of the information even online. I do however intend to get that book you suggested to get up to speed.
My potassium levels are usually good sometimes a little high but always within range.
Sally Pacholok, author of Could it be B12 ? book has written some online articles about B12 deficiency which might be worth searching for and has some Youtube videos.
When I searched online for "Pacholok B12 slide show" I found a presentation she gave some years ago to a conference on ageing.
Films and videos about PA (Pernicious Anaemia) and B12 deficiency
Glad to hear you're doing better! Indeed some of us just need really high doses, me included.
It sounds like you are already splitting doses during the day, but you could try experimenting e.g. 2 in the morning, 1 in the afternoon, 2 in the evening. Getting too much at one time can just cause the body to eject it that much faster, a known phenomenon with many substances. And ideally you want to inject before the symptoms start back up, so if you can keep a log and see if there's any pattern, you might be able to get ahead of the symptoms hour-by-hour.
You may also want to check folate levels, because taking more B12 can use up folate. Or add in a 400-800mcg dose of folic acid / methylfolate. Sometimes we think we need more B12 but in fact we could also use more folate.
Thank you! I have not been splitting doses and did not think to do that. I will most definitely experiment with doing that. I am taking a Methyl-folate and a B6.
For the B6, what cornwaller said. Some people are sensitive to it and can overdose. Conventional wisdom says no more than 10mg B6 per day, and even that is too much for some.
High B6 can cause the same symptoms as low B12, including nerve damage.
My understanding is the amount absorbed at one time decreases with the dize of the dose. So it is not exponential. I have never found definite research in this (as it likely varies from one person to another) but as with tablets one may absorb only 1% of the dose (just an example) There are diminishing returns the higher you go so splitting the doses makes a ton of sense here. In fact, you may not need so much if you take the injections spaced apart. I wish I had a good explanation for this but I do remember grasping the concept somewhere on the (long) thread about B12 absorption rates on Phoenix Rising. Obviously we know we absorb better with injections but it is faulty to think that we absorb 100% of a dose.
With all that B12 I am guessing your need for folate is much higher.
Hope this didn’t confuse you and if anyone disagrees or has a link that explains this, please share.
I hadn't thought about the absorption rate, but the clearance rate can be higher with increasing dose. This is well-known with cortisone, the more you take, the faster it gets cleared, so potentially one has less circulating cortisone with a higher dose - thus the recommendation to take no more than 10mg hydrocortisone an hour. This will of course depend on the pharmacokinetics of the particular substance.
I had looked this up a long time ago for B12 and didn't save the results, but a new search found this: onlinelibrary.wiley.com/doi... Can't say I understand all of it without reading the full paper (it's behind a paywall), but this seems to suggest the same thing, in an animal model:
The negative relationship between dose and normalized AUC is compatible with possible saturation of tubular reabsorption, thus increasing renal clearance at higher doses. [but they're also looking at long-term over many days, which I've totally ignored here. but also of note they are using very high doses]
I do vaguely remember reading once that the reason the standard dose is 1mg is that it's within the optimal range of absorption versus clearance. But good luck to me finding that back, and I'm too tired to look further LOL. Also I don't know if the pharmacokinetics of cyano and hydroxo are different (they probably are, see the last bit regarding cattle).
If you ever find that Phoenix Rising rising link back, I would love to read it.
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This paper compares nasal vs intramuscular but of interest is Figure 1, B. Levels seems to stay for around 250 minutes (~4 hours), so PaintLadie that would make a good argument for injecting no more than (I'm guessing) 1 to 2mg every 4 to 5 hours to minimize the clearance effect.
Also found this interesting little gem , looking at cyano vs hydroxo in cattle . Sorry this one is totally off topic but deniseinmilden might appreciate this one!
Cyanocobalamin (CNB12) had lower retention in plasma and liver than hydroxocobalamin (OHB12) (p < .05). Cobalamin levels peaked in plasma by 8 h after treatment in both groups. However, OHB12 reached a higher peak compared to CNB12. Levels of cobalamin in plasma dropped closer to baseline levels 24 h after CNB12 treatment while OHB12 maintained higher concentrations. Hydroxocobalamin increased significantly hepatic concentration of cobalamin 28 days after treatment, while CNB12 did not increase liver levels relative to pre-treatment (p < .05).
The last 2 days thank to the suggestions on here I have cut my doses in half. I'm now splitting the doses after 5 days of 5 - 1 ml injections. I had been recovering significantly on the 1 ml doses and have tested splitting the doses the last 2 days. I am still doing good and am taking a half ml about every 4 hours, but after my "loading doses" it's hard to say if the half doses would have worked just as well as the full dose with the severe symptoms I started with. It would be something to test out if I ever experience such a low again. Which I hope never happens again. I am totally all for reserving my B12 as it can be hard to get on occasion.
If you split ampoules it's best to wrap the syringe with the other half in something like aluminum foil, for the light, and put it in the fridge, to reduce any bacterial growth. Best wishes, i hope you stay well 🙏
Thanks. I was kidding myself when when I thought it was a significantly higher retention rate. I was hoping you would chime in. You seem to know these technicalities.
B6 supplements can be helpful but negative effects can also be induced quite quickly in some people. If this is a possibility with you then you might consider trialling not taking the b6 for a period and see how that goes. You can always restart if it doesn't help.
Thank you, I tend to have to much iron (hemochromatosis) or something like that, without kidney and liver issues. B-6 along with the B12 supposedly helps with this, but I will make sure I don't take to much. Sometimes with somethings less is more even if more is only temporarily what you need.
HiI hope you are keeping an eye on your thyroid as this can be affected by b12 shots and be aware NHS only test TSH levels, T3 & T4 tests are required to get an accurate result. Also, I'm sure you already know, you iron & folic acid levels need to be increased.
Hi thank you, yes my thyroid has been tested several times so far all is well with it. I will make sure to have them do both tests at my next yearly as things could change by then.
I take B6 in the form of Pryridoxal-5-Phosphate. My research and experience indicates it is beneficial and no known problems have been established. The information that it is harmful started in the Netherlands when for reasons unknown people were taking 5 grams a day and after a year there were issues that went away when they stopped. The myth has grown from there.
It seems from my experience and research my body may store B12 but it like oral supplementation can not be used by my cells which is all I care about.
I embrace and act on symptoms are what matter with postive results.
My understanding from reading Martin Hooper’s book is that if you can’t absorb B12 orally then you can’t use any liver stores either hence why you need injections for life. Be careful with B6 - easy to overdose. Maybe you need more frequent injections?
I need to get that book. The topic of B12 stores always puzzled me. Yes, I wonder if stress and a demanding physical day make the difference in the amount that is needed.
Yes absolutely makes a difference. Even emotional stress and hot weather can increase b12/folate need. However if you're always playing catchup with symptoms you probably just need a higher dose/frequency on a regular basis, of b12 or folate or both.
B12 stores from what i understand : the b12 stored in the liver is secreted back into the intestines. From there, it again needs IF to put it into circulation. If you can't absorb from food/tablets, you won't be able to absorb the liver reserves either.
Whether we can build up liver reserves is a separate question & i'm not sure what the answer is.
Thank you all this has been a most helpful thread. I intend to read it and reread it again as well as invest in Martin Hoopers book among other things.
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