B12 injections

[LynneG]

Is anyone a member/ obtain B12 ampules from/or know anything about Dr Joseph Chandy and his charitable group B12d? I found the site and emailed him for advice - he is in his 70's now and retired but when in GP practice he found many of his patients symptoms could be relieved or cured by vit B12 injections. So he tested his patients for low B12. Even treated when above the blood level min requirement. He was reported by the chemist who noticed many more prescriptions for B12. But his patients were better. He had kept meticulous records or as he said he would have been struck off. He wasn't but he was made to stop much to the distress of his patients in the North East.

[Hillwoman]

B12d.org are well-known, as is Dr Chandy, the joint founder of the charity. I've had some help from them, though I've never managed to get to their coffee mornings. They are in the same county, but a minimum 90 minute drive from where I live.

You'll need to email Dr Chandy to discuss your current health. After that, if he thinks B12 shots would benefit you, you will receive some ampoules - if the charity has any in stock, that is. Stocks depend on people making regular donations, though they will understand if you can't afford to contribute towards the cost of your treatment. You will need to buy your own syringes, needles and sharps bins. Medisave is a good source for these.

[LynneG in reply to Hillwoman]

Thanks hillowman, I did email on the link the website provided and Dr Chandy got back to me unbelievably within an hour or so. He said that I was deficient and needed to phone him at 10.30 today. I did but he didn't answer. No worries I will email again. I was just worried incase not legit - seemed too good to be true. What a wonderful gentleman.

To be honest, I am frightened of the thought of injecting and wondered about patches. But I really just wanted his insight as my deficiency appears to be due to my autoimmune condition (RA) ppreventing my Active B12 being transferred to cells. As my Active B12 level is sky high off the charts so stacking up in blood. I have not seen anyone else on here with that problem.

Thanks tho for explaining that it is a noteworthy charity and your testimony - means a lot

[Hillwoman in reply to LynneG]

You'll soon get used to injections. Remember that you have the option of injecting subcutaneously into fat - the midriff is a good site for that. Have a look at YouTube for videos, or ask Dr Chandy. If you have any more questions, just ask the forum.

[puncturedbicycle in reply to LynneG]

As Hillwoman says, the injections are easy to get used to. Can I add that if you get the ultrafine insulin needles (not the heavier ones used for intramuscular injection) you will not feel a thing. They're flexible and lubricated and only slightly more substantial than a human hair so your skin gives them almost no resistance.

[Hillwoman in reply to puncturedbicycle]

Good point. I use 18G, long-ish needles to draw up from the ampoules, very fine 29G or 30G half-inch needles to inject, and a 2.5 ml Terumo luer lock syringe.

[fbirder in reply to LynneG]

You have 'sky high' levels of active B12, yet Dr Chandy tells you that you have a B12 deficiency that is caused by RA 'preventing' it from being absorbed into the cells.

This is something that I've never heard of before, no do I have the slightest inkling as to how it could possibly work.

Have you actually been to see a doctor to check that any symptoms you may have aren't due to something else?

[LynneG in reply to fbirder]

Hi fbirder, Yes I have been to my GP - she was expecting like I was that my active B12 would be low - so flumoxed too. She was going to ask for advice from a haemotologist at the hospital and phone me back, which hasn't happened yet as she only works 2 days per week.

The very fact that my active B12 is so high shows that there is something abnormal going on with my B12 metabolism.

I emailed my blood test results to Dr Chandy and he did not say that RA or any autoimmune was causing Active B12 not to be absorbed.

(that was something I read in a link from an administrator on this site with a whole load of info about B12 metabolism, along with current guidelines for practitioners to take to my GP and lots of indepth info)

The info stated that the TC11 (enzyme?) could, re inflammatory processes eg someone with an autoimmune condition or cancer, prevent active B12 being transported into tissue - the language of the article - not mine.

And so deficiency be created in this way, even tho B12 was being absorbed and converted to Active B12 that it was being prevented by the effect of TC11.

What gets me is that there are lots of people out there with autoimmune conditions that are part and parcel of chronic high inflammation. My inflammation levels aren't even that high anymore - well in normal range (I know normal range counts for nothing as with most tests, but still!) And lots of people with inflammatory processes going on as well as with heart disease, skin diseases, IBS the list is endless. So you would think that someone would know about this, I cannot be the only one.

Maybe B12 deficiency is not the cause of my symptoms but they seemed to point to on Dr Chandy's chart as serious deficiency. And something is definitely not right with B12 metabolism.

My grandma was diagnosed with Parkinsons and that is when her B12 was taken for the first time and they discovered obviously too late that she had untreated PA. This concerned my father who was then in his fifties and so prompted him to request B12 level test, he too had PA and had ijections for life

In 2011 my B12 level was 191 (I was told by GP - normal and as then niaive and didn't ask for printouts) Dr Chandy stated that I had severe B12 deficiency and will most likely have been deficient since 2000. He didn't comment further just asked me to ring him the next day at a specific time but unfortuately he didn't answer. I am going to email again but just thought I would check with othes on here whether had heard of.

[fbirder in reply to LynneG]

Have you had an MMA or homocysteine test?

If your holotranscobalamin isn't getting into the cells then the levels of both of these should be raised.

[LynneG in reply to fbirder]

Not had MMA test.

Have been trying to lower homocysteine with food, high zinc foods. foods rich in folate and food rich in B vits, have been supplementing animal gelatin and homemade bone broth to support glutathione production. All supposed to help lower.

April 2016 homocysteine 9.7 umo/L (range 5 - 10.5)

Nov 2016 homocysteine 8.2 umolL (range 5 - 10.5)

Just found TC11 is the carrier protein that carries active B12 into tissue. So can be blocked or antibody production against

[fbirder in reply to LynneG]

So, you've not had an MMA test and your hCys is within normal levels. That really suggests you do not have a problem with B12 or folate.

[Barry1955]

Hi LynneG,

I can concur with Hillwomans comments, Dr. Chandy is a saint, but his charity has more requests for B12 than they have funds for, so rely on donations to buy the ampoules. The grants they get are only towards running the charity, I believe.

Have you registered on the B12 website and completed the health check form ? you need to do this before you can access the b12 ampoule request form, and need to state what Dr. Chandy said you need as far as treatment ( methyl or hydrox ).

I received 10 hydrox ampoules yesterday foc, but I will be sending a donation to cover their costs.

ATB

[LynneG in reply to Barry1955]

Hi Barry, did you know that Dr Chandy has just written a book

[fbirder]

Why not simply buy hydroxocobalamin from Germany? That way you get stuff that will work and you know it's from a reliable source.

[LynneG]

Thanks for all your help, advice and testimonies - really grateful. I really still don't know if I should be injecting/supplementing. Dr Chandy said I did when he replied to my email but I need to talk to him or someone who totally understands B12 metabolism. Because my active B12 is so abnormal high at about 70% - normal being 20-30%. Which logically means I am absorbing but something is blocking active getting in to cells and so the Active B12 is building up in my blood. So my cells are still deficient.

This was not what I expected when I had the test as have lots of symptoms of deficiency. It must be very hard to get GP's to take note of low but not abnormal low out of range B12 but to get anyone to take notice of high Active B12 with symptoms of deficiency is near impossible.

I have read that defiency can be caused by the body blocking Active B12 being transported into cells by TC11 (what ever that is? apparently there is TC1 and TC111 also) because of chronic inflammation as with autoimmune disease. As I have RA, I fit the bill although I have fought long and hard to get inflammation levels down and they are in actual range now, 6 months ago my CRP was only 1.9 (yay, the lowest ever)

So if I have some metabolic process preventing me getting Active B12 into cells - will it do any harm to supplement - just to see if I can override and some B12 be forced into cells and symptoms subside. Or will it just build up in my blood and be dangerous. Are high levels of Active B12 in blood dangerous? These are all questions that I need to ask but of who?

My total serum B12 is not high at only 392 pmol/L (range 140-250) just the active is 209.6pmol/L (range 25.1-165)

If anyone knows an expert that I could email, I would really appreciate it

Thanks

[LynneG in reply to LynneG]

oops just re read, can I just point out that Total serum B12 at the lab I had taken is range 140 - 250 pmol/L is classed as insufficient. So mine at 392 pmol/L is not high by any means. I believe it is in the grey zone as you call it. Its the Active that is far too high - thanks

[Steap]

I'm reading your posts with interest.

My b12 after supplimenting with methyl b12 spray rose to serum 666pmol in January but the Active went off the scale i.e. >256pmol.

That was with a seven day break between supplimenting and testing.

Before supplimenting it was serum b12 153pg (112 pmol) and the Active was 67.8 pmol/l.

All very confusing as I've been supplimenting since the end of November and feel rotten with fatigue and a host of sensation and visual annoyances.

I'd presumed that anyone supplimenting would have high active b12 on subsequent blood tests. Is that correct or was I actually getting plenty from the spray alone??

I've recently stopped the methyl b12 spray and changed to hydroxycobalamin sublinguals that I'm taking at 500mcg per day and feel like I can tolerate that better but my symptoms only seem 'still there' rather than healing.

[LynneG in reply to Steap]

Hi Steap, I know that it is 2 yrs ago , time flys when you are having fun! I just wondered how you are now? I had my active taken again last yr and was still abnormal high as the lab detailed but they didn't take the total B12 and so don't know the percentage. I had been told by someone else on here that some people have found similar ab highs and it seemed that the best action is to get total B12 levels up high (with liposomal supplements) around 2000 or higher and hope that some active B12 is forced in to cells. And that healing doesnt start until around a total of 2000 , someone else said healing doesn't start until around 1500

I still have symptoms. But the symptom of burning mouth is relieved more often when my B12 is higher. Other symptoms still remain constant. My total level reached 1170 and I decided to stop supplementing 6 months before annual GP blood test to see what would happen. Which gave me another 6 months before that to keep taking 5000mcg B12 so my level would have risen well above 1170. My total level when had tested had fallen to around 700 (sorry don't have in front of me) and as I couldn't get the result It was 9 months or more before I have just started supplementing again 5000mcg methyl and adenosyl (seeking Health brand) It fell to 600 or a bit less. During that time my burning mouth became worse and I started with severe vertigo . I was referred to neurology by my GP - the neurologist took the extra total B12 test at my request but was not interested in B12 as obv within normal levels and just said don't worry re B12 it doesnt matter if higher than normal - so misunderstanding my concern.

My Homocysteine level I had managed to get down to 8 from far too high at 9.7 by being proactive with B12 supplementation and foods higher in zinc. But annual test with having no B12 supplement (but high B12 food still) now shows 9.8 - devastated! Route to alzheimers /dementia. Ideal healthy level of Homocysteine 6-7 (see food for the brain website and research)

So my resolve is to keep taking 5000mcg B12 liposomal daily and get my total up above 2000 and hopefully will improve homocysteine.

Dr Chandy from the B12 Charity has just written a book to be sold on amazon x