Desperately seeking to understand the B12 mystery

[maiken77]

Hi everybody.
I have been reading different posts on this forum with high interest. There is just so much about being B12 deficient, that I cant understand, or my Doctor can understand, for that matter.
I have been reading for months, trying to figure out what to.
About me: Started out with a stomach ache 3 years ago, my hair starting to fall out, feeling more tired, nothing too alarming, but it continued to worsen, and two years later I learned, that it was a B12 deficiency. At that time it was 192.

In Denmark the common treatment for B12 deficiency is either an injection or an oral tablet in the form of cyanocobalamin. The doctor prescribed 1000 mcg of this oral tablet, called Betolvex. And OMG.. how it made me feel absolutely worse. Felt like I had the flu, extremely tired, glossitis developed on my tongue and the feeling of pressure to my brain. My Doctor never heard of such a thing happening, and assured me, that it was not from the supplement. Well ok....so I tried again weeks later - same thing happened. That's when I started reading about B12, and wow..there's a lot of different experiences out there!! I might add that I am smoking 10-15 cigarettes a day...I know..not good for you..... but maybe that was causing my reactions to the cyanocobalamin?? I read about this, but can no longer remember the explanation why (brainfog)..... - anyways, I've had no problems in the past with taking cyanocobalamin in multivitamins in smaller doses, now I do.
I learned that, when I thought i just might be deficient i some of the other B vitamins. I took a B vitamin complex, again with cyanocobalamin, and it send me to the ER, after 3 doses, with heart palpilations (pulse 140), try mouth, increased thirst/urination, sweaty/cold palms and feet, vertigo, blurred vision, diarrhea. The Doctors thought I had a thyroid problem, of course..negative testing, then they thought I had had a blod clot in my heart, and kept me overnight for observation, again negative. They even brought me back in for a CT scan of my heart, days later, and could not find anything wrong, besides from a rapid pulse. No one would listen, that I had just been taking supplement containing cyanocobalamin.
I started experimenting with methyl cobalamin, and did good, on small doses, very small, just 125 mcg. I increased slowly, and only got up til 750 mcg, and then..back to the heart palpilations etc. My Doctor thinks I must be allergic to something in the pills and send me to be checked for allergies. I waited for two months to get into the hospital to be tested, only to be told, that my symptoms didn't look anything like an allergic reaction. That's what I thought myself, two months wasted...
My Doctor has told me straight out, that he does not know what to do with me. And I think...how can Doctors know so little about this. It's not rocket science, it's just a freeking vitamin deficiency, sorry...just getting a little frustration of my chest!!

I have read about Fredds protocol, and thinking that it might be right for me. I don't think, that I necessarily have complex methylation problems. My own theory..and there has been quite a few of these...is that when I only take the B12, my symptoms are similar to folate deficiency. So I bought the B-complex from Pure Encapsulations, but I am actually a little scared of trying them, as I am feeling very weak now, with my B12 at a 140, and having a racing heart among other things, even though I have not been experienting with supplements for weeks now. So I am scared of feeling even worse.
Should I just go ahead and take the vitamins, or can it make me worse??
I also think that I have to imrpove my gut health, I am already eating a fairly healthy diet, but more friut than veggies, and very little fish. So I will also be starting on a good quality Probitic.

Hoping to hear from you.

 

[helen1]

You say you did well on small doses of methylcobalamin. You also are very deficient in B12. If I were you, I'd go back to very small doses of methylB12 and build up very slowly. Back off if to less if any symptoms return. I'd have methylfolate on hand to add later, once B12 is stable, in tiny doses. That's how I'd start anyway...

For sure it more than makes sense to treat your B12 deficiency just don't use cyanoB12.

@maiken77

 

[Hip]

There is just so much about being B12 deficient, that I cant understand, or my Doctor can understand, for that matter.

If you get benefits from taking high doses of a vitamin, that does not necessarily imply you are deficient in that vitamin.

High dose vitamins have metabolic effects beyond just fulfilling your vitamin requirements. Many compounds (vitamins, supplements and drugs) have dose-dependent effects in the body, and so the higher the dose, the greater the effect.

For example, oxygen is essential for human beings, and provided we have adequate amounts, it sustains life. However, if you start taking supraphysiological doses of oxygen, from treatments such as hyperbaric oxygen therapy (HBOT), the oxygen can start doing things in your body over and above just meeting you basic need for oxygen.

 

[PeterPositive]

@maiken77

I started experimenting with methyl cobalamin, and did good, on small doses, very small, just 125 mcg.

That's not a small dose, it's already 50x the RDA.
I have been through the same issues, being very depleted in B vitamins and not being able to tolerate them. As others have pointed out you need to start low and go at your own pace.

If 125mcg works for you, that's fantastic. Keep it that way and when you want to try a higher dose go in small increments instead of doubling the amount.

With your B12 serum level you certainly need B12 but you don't want to end up at the ER either. Find the dosage that doesn't cause any harm and you'll be fine.

You will probably also need to take a B complex for support. You can find a product with the basic dosage (100% RDA) and start with 1/2 or 1/4 of the dose and see if you can tolerate it.

Good luck

 

[ahmo]

Maybe useful references:
Diagnosing and Treating Vitamin B12 Deficiency‬ vid

http://www.b12deficiency.info/
This site was created as a hub to bring all the key websites on vitamin B12 deficiency together in one place.

 

[maiken77]

Thanks guys, for your response, I really appreciate it! It helps me to think that I am not so alone in solving my issues, when there is no Doctor to help me. I will definately try what you suggest

I dont have much experience in taking supplements, so how do I start with ½ a dose or 1/4 of a dose, when the B complex comes in capsules, do they not need to be swalloved whole?

 

[charles shepherd]

You may find these brief notes on vitamin B12 and ME/CFS, which are written from the perspective of a doctor who takes a fairly sceptical view about the value of vitamin B12 treatment in ME/CFS, to be helpful. The research and clinical trial evidence just isn't there at the moment. So the MEA has been discussing the possibilty of funding some new research into vitamin B12 in ME/CFS to see if we can get some answers as to whether there is any sound evidence of B12 deficiency in ME/CFS and whether vitamin B12 injections are of any value.


1 This is a very helpful (UK) document which describes in some detail how people with a blood test which indicates varying degrees of vitamin B12 deficiency should be assessed and managed:

http://www.ruh.nhs.uk/For_Clinician.../B12_-_advice_on_investigation_management.pdf

2 Research into vitamin B12 deficiency in ME/CFS, investigating vitamin B12 deficiency in ME/CFS, and the use of vitamin B12 supplements, is covered in the treatment section of the MEA purple booklet:

http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

3 At present, there is no sound scientific evidence of vitamin B12 deficiency in ME/CFS and no evidence from a good quality clinical trial to show that vitamin B12 is an effective form of treatment for ME/CFS. However, Regland et al from Sweden have reported that in a survey of 38 ME/CFS patients who had been receiving vitamin B12 injections in combination with folic acid at least once a week for six months, 15 reported a good response and 23 reported a mild response.

Abstract: http://www.ncbi.nlm.nih.gov/pubmed/25902009


4 People with ME/CFS must make sure that a diagnosis of pernicious (= vitamin B12 deficiency) anaemia (PA) has been excluded before using vitamin B12. This is because some symptoms of pernicious anaemia can overlap with ME/CFS and if not properly treated pernicious anaemia can cause permanent and serious damage to the nerves in the spinal cord.

Sub acute combined degeneration of the spinal cord:

https://www.nlm.nih.gov/medlineplus/ency/article/000723.htm

5 Vitamin B12 deficiency can also be caused by lack of the vitamin in the diet (vegans being at special risk) and stomach or bowel conditions that either effect the ability to produce intrinsic factor or decrease the absorption


6 Vitamin supplements are not recommended in the NICE guideline on ME/CFS. So most UK doctors are going to be reluctant to prescribe vitamin B12 injections to people with ME/CFS - unless there are sound reasons for doing so


7 What NICE regard as inappropriate prescribing of vitamin B12 in the UK can also lead to a GMC investigation:

http://www.sunderlandecho.com/news/...e-says-patients-at-risk-as-a-result-1-6725330

Good short summary on vitamin B12 deficiency:

http://www.webmd.boots.com/healthy-eating/guide/vitamin-b12-deficiency

PA Society:

http://pernicious-anaemia-society.org/pa-diagnosis.php

Vitamin B12 myths:

https://www.sciencebasedmedicine.org/vitamin-b12-the-energy-panacea/

Dr Charles Shepherd

Hon Medical Adviser, MEA

 

[PeterPositive]

@maiken77
You asked a question on my profile page, but it's easier to reply here:

You seem to know a lot about Methylation, I am desperate to understand how it works, and have been reading a lot. But I am not quite clear about how folate and B12 work together. Why cant you just take a B12 supplement, and not use folate. Does B12 alone not helt to elevate folate levels?

You can take B12 alone if you need to fix a deficiency. If you need to improve your methylation status (lower homocysteine, increase glutathione and SAM) B12 alone is not sufficient.

 

[Johnmac]

I appear to have largely fixed my chronic fatigue by switching from the Freddd protocol (which was effectual but complex & hard to manage) to the B12 transdermal oils - which provide bigger dosage & smoother delivery (& less supplements - e.g. no potassium or carnitine - & no dental caries). I take B2 & C & brazil nuts (Se) & cook with iodised salt for iodine, all of which are apparently needed to help B12 to work; plus I take a range of other stuff for cognition & memory, such as tumeric, cinnamon, cod liver oil & kyolic. I've gone back to 95% paleo (no grains or dairy) just to make sure. The results have been pretty good. Energy picked up right away; cognition & memory took about 3 months to show results. Yesterday I picked up a fallen tree I have been staring balefully at for 4 months, & threw it on the back on my pick-up.

In the middle of all this I got big gut problems (I don't know if they were related to B12), & luckily the first thing I tried was low-FODMAP. It's counterintuitive but was very effectual.

 

[Hip]

I appear to have largely fixed my chronic fatigue by switching from the Freddd protocol (which was effectual but complex & hard to manage) to the B12 transdermal oils - which provide bigger dosage & smoother delivery

Have you ever tried B12 injections, which you can buy cheaply at goldpharma.com for example?

 

[Johnmac]

Have you ever tried B12 injections, which you can buy cheaply at goldpharma.com for example?

Yep, but I find the oils a lot more convenient. Also uptake appears to be around the same.

 

[maiken77]

I appear to have largely fixed my chronic fatigue by switching from the Freddd protocol (which was effectual but complex & hard to manage) to the B12 transdermal oils - which provide bigger dosage & smoother delivery (& less supplements - e.g. no potassium or carnitine - & no dental caries). I take B2 & C & brazil nuts (Se) & cook with iodised salt for iodine, all of which are apparently needed to help B12 to work; plus I take a range of other stuff for cognition & memory, such as tumeric, cinnamon, cod liver oil & kyolic. I've gone back to 95% paleo (no grains or dairy) just to make sure. The results have been pretty good. Energy picked up right away; cognition & memory took about 3 months to show results. Yesterday I picked up a fallen tree I have been staring balefully at for 4 months, & threw it on the back on my pick-up.

In the middle of all this I got big gut problems (I don't know if they were related to B12), & luckily the first thing I tried was low-FODMAP. It's counterintuitive but was very effectual.

Sounds like the B12 oils could be worth testing. However, I'm living in Denmark, and it looks like the oils are sent from Australia, so it would probably take forever to get here, and at a cost of 75$ including delivery per bottle, it is a little much for me. Do you know of other places it can be bought, or does it have to be from www.b12oils.com to be most effective?

 

[Johnmac]

I haven't seen another oil, sorry.

 

[junkcrap50]

@maiken77 I'm also unaware of any other B12 oils, as I learned of a it from these forums. However, I can tell you that @ahmo (I believe, sorry to tag you if I have the wrong person) has had success in crushing up mb12 pills/lozenges and mixing the powder into moisturizer and applying it to her skin under a damp bandage. You can try searching the forums for her posts on it for more info or maybe she will respond here. I think maybe 1 or 2 other people also tried her DIY B12 oil method.

 

[ahmo]

@maiken77 I'm also unaware of any other B12 oils, as I learned of a it from these forums. However, I can tell you that @ahmo (I believe, sorry to tag you if I have the wrong person) has had success in crushing up mb12 pills/lozenges and mixing the powder into moisturizer and applying it to her skin under a damp bandage. You can try searching the forums for her posts on it for more info or maybe she will respond here. I think maybe 1 or 2 other people also tried her DIY B12 oil method.

Yes. I use a bit of fabric, w/ plastic attached to back, crush the tablets, and embed w/ a bit of body creme. I also use this method for B2, which I need less of since using it transdermally. Alternatively, I just use a few drops of olive oil, once I've already used some cream on the pack. I use the same 'bandage' for many days. I've been applying it to my calf, using a sock w/ foot cut off on top, to hold it in place.

I used 1 vial of B12oils. I don't appear to find any difference between it and my DIY method. I've now switched to nasal spray, using B12 crystals from a group buy. This has allowed me to use more, simply. I like this method, but the results don't seem to differ from either the commercial or DIY transdermal.

Some say that there's no comparison to injecting, but I haven't bothered to try injectable, as it's a lot more expensive, and I don't expect it would change my life, as I have no overt deficiency symptoms.