This is my first post here and I'll try and keep this short and sweet as to not bore anyone lol. If you're not interested or don't wanna read my back story just scroll down to the ** later in the post to see my questions
I've been ill for a long time, I was diagnosed with a b12 and folate deficiency a few years back at around 19 years old. I had the injections (hydroxy I think) but I didn't see any improvement in energy or symptoms whatsoever. My mean corpuscular volume did return to normal though which is a positive. Over the years I've worsened, the doctor stopped giving me the injections because I "wasn't deficient anymore" seeing as my serum levels rose.
Well I got my thyroid tested recently through blue horizon and b12 and folate happened to be tested aswell. I was folate deficient again (third time now) and my b12 has steadily dropped over the years back to the point now where I'm like 24 above from being clinically deficient again. As a side note my reverse T3 was also high and the ratio was low, the TSH, T4 and T3 were all good though.
I'm fairly certain it's an intestinal absorption problem, I have some gastrointestinal problems and have done for years, although the intrisic factor test thing was fine. I was first referred to a gastro which showed thickening of the terminal ileum and swollen lymph nodes, told I have IBD but the colonoscopy was normal. A further scan showed the same inflammation, which leads me to believe it's something bacterial/microscopic in nature, but I was discharged. I've been through it with the various doctors I've seen, told I was crazy, it's all in my head, the lot, something I'm sure many of you here can relate to.
Anyway, I'm seeing my primary doctor on Tuesday to discuss my latest results. I think she'll prescribe me the injections again (and probably refer me to help figure out why I'm not absorbing well) but seeing as the hydroxy had no effect whatsoever, I'm interested in trying methylcobalamin injections. I really doubt she'll prescribe it though...
**so I was wondering if anyone knew any safe sources here in England where I can buy mb12 from? (Am I allowed to ask that? Lol). I'm wary about buying from the Internet and injecting myself with something I can't be sure of the purity of, but I'm at the end of my tether and I need to try. Dr Chandry sent me his number through the b12d charity and kindly talked to me. Sadly he said they no longer supply methylb12 because patients were complaining of pain at the site of injection and something about buffers. Has anyone here who hasn't responded much to hydroxy had better results with the methyl?
The other thing I was hoping for help with, was whether anyone could link me or point me toward some studies or something evidential that I can show my doc which highlights the importance of mb12, and maybe persuade her to prescribe it. I'm also going to ask her if she can get me the MHTFR test to see if I have some mutations or whatnot but I must admit I don't know very much about it or what to ask for specifically.
Well, I didn't manage to keep it short nor sweet but thanks for any help, it'd be greatly appreciated.
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Cynosure
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You could try sublingual methylcobalamin lozenges or spray. Some people find they work well.
Even if you have two copies of the MTHFR mutation your ability to make methylfolate (which is needed for the conversion of hydroxocobalamin to methylcobalamin) is only reduced to about 30% of normal. Rather than taking methylcobalamin (which, as you have discovered, is difficult to get hold of in injectable form) you could do what I do.
I have two copies of the 677C>T MTHFR mutation and I've found that taking methylfolate (available from Amazon) has helped quite a bit. I did try injecting methylfolate but it made me feel quite rough.
Thanks for the response. I remember trying sublingual methylcobalamin agesss ago and didn't notice much. I'm gonna try some methyl folate though definitely, and try my best to get some injectable mb12 lol (:
What should I request for the MTHFR mutation thing? Or do I need to go private to get it tested (probably lol).
I got my DNA tested for genealogical purposes (trying to build a family tree - didn't help as my only close matches were my Mum and her cousin). 23andMe will do the test for £125. They look at several thousand possible mutations, including those on the MTHFR gene, and give a (not very helpful) interpretation. There's a service called Genetic Genie that does a good interpretation of the methylation genes.
But I'm not sure I'd recommend it as the vast majority of the stuff on the interwebs about methylation and MTHFR is non-scientific clickbait.
Rather than waste money on the test (unless you're interested for other reasons) I'd just start taking methylfolate, just in case you're one of the 1% who may find it useful.
Here's a proper, real, scientist talking about the topic...
If I were female I might consider getting tested just for the BRCA1 and BRCA2 result. Some people have mutations that substantially increase the risk of breast and ovarian cancer - high enough to justify prophylactic surgery.
I got 23andme'd last year, year (I have ms and want my body to work as best it can and perhaps being more aware of specific genetic weaknesses/mutations will help?)
I found out what could be on the cards for me as a side effect. Other than treating my genes well (good food, sleep and stress minimisation) I'm not sure what else I can do now I know I have an increased chance of getting alzheimers, breast cancer, parkinsons?
For most genetic factors there's not really a lot one can do other than to live healthily. Some, like MTHFR, can give useful information as to how certain supplements, in certain cases may be helpful.
The biggie is the mutations for breast cancer (BRAC? From memory). Many people decide that elective mastectomy is a good idea if their genes and family history suggest that there's a very high chance of them getting it.
As far as I'm aware Methylcobalamin is not Iicensed for use in UK so your doctor cannot prescribe it . You can get it in dried form from OXFORD BIOSCIENCES. If you order it they will tell you where to get the saline to reconstitute it .
A company called INTRAVITA sells methylcobalamin in ampoules which are made by a German pharmacy company. I have used both of these sources and can vouch for them .
I have heard that Methyl is a good form of B12 to use for neurological conditions , but I don't know of any scientific papers on this subject. As you probably know , the medical community do not have much knowledge on B12 deficiency , which is a complicated subject . Hope that I've been of some help at least . Best wishes to you.
It's INTRAVITA (google it) You can use sub -cutaneous or I.M. (into the muscle) You need 1 ml syringes, a long needle for withdrawing the B12(1 1/2 " long ) an injecting needle 1 " long with a narrow gauge of 25.for i.m. You also need vH
I inject into my thighs ,(i.m.) , using the outer middle third portion .You can get lots of tips from the Internet on injecting .
Methylcobalamin seems to work better for my nerve damage. Tried several places and in the end ordered from biosciences. The price is going through the roof for methyl. One site worked out at £4 plus per vial. Very pricey if using on alternate days. Also seems to be a shortage of methyl.
The people involved in the child protection report which was endorsed by the BBC , Ed Balls and Andy Burnham among others , reserved methylcobalamin for the private sector . Many doctors then left the NHS or took early retirement , some of who took up private practice in order to take advantage of the methylcobalamin monopoly and cash cow which was created . Doctors in the private sector are charging upwards of £100 per dose for methylcobalamin which should only cost 70p per dose . Any child with undiagnosed and untreated b12 deficiency or pernicious anaemia which has been caused by nitrous oxide gas and vitamin b12 lowering pharma medications over several generations which has caused inborn errors of metabolism , have been taken into care by LA`s and are being denied treatment . Some look like Belsen victims ( hair has fallen out and they have severe weight loss and spontaneous bruising ) and LA`s have suspended contact with their parents to hide the abuse and neglect they are being subjected to in " care " .
Its interesting to hear what Dr. Chandy said, I recently ordered some Methylcobalamin from his charity, about 3 months ago, and when I plucked up courage to self inject it was so painful, I couldn't face it again. A nurse showed my husband how to do it, but once again it was so painful I can't let him do it again. Why would it hurt so much, and can anyone explain what you said about buffers?
Foggyme put up a post 14 days ago regarding this. If you scroll through Posts you will find it and there are lots of replies and advice on what to do to make this solution easier to inject.
There was a reply on here a while ago about the last lot of methyl B12 from Dr Chandy's charity being made up in sterile water, not saline. Because it's not buffered with the salts, so similar constitution to our blood, it hurts when you inject. I had some too and it was incredibly painful on injection. I think the next batch is supposed to be buffered.
You need to grab the fatty area at the back of your thigh at the top , near to your buttock , between your fingers and inject the pinched part of your flesh . You should find this much less painful and in fact you may feel no pain what so ever .
I'm in the U.S. where Cyanocobalamin is used a lot, but it did not work for me after monthly shots for a year. That is when I switched to methyl which works great for my fatigue and neurological symptoms. So that is my experience with methyl. I hope it works for you as well!
hi, sorry to learn of your ongoing issues! I have PA and the shots were not working for me at all. You can easily get Methylcobalamin B12 in vitamin form through a very reliable company named Solgar. Pretty sure you can order from them directly or through Amazon.. Best to buy the sublingual type, especially with an absorption problem. I take 5000 mcg daily, sublingual,y, under the tongue, and my B12 went from deficient to steadily above the high end of the normal range, which is fine, since it's water soluble and you body only keeps what it needs. Good luck!
Aw, thanks! That's great! I'm going to probably try some methyl sublinguals again soon. I just ordered some adenosylcobalamin. Have you noticed an improvement in symptoms as your b12 serum levels rose too?
People with Scandinavian ( blonde blue eyed ) Indo European (PIE) or African ancestral DNA share a genetic line which carries a mutation that prevents the production of intrinsic factor which is needed for the absorption of vitamin b12 . The medical dictionary says that people with blue eyes , vitiligo ( whitening of the skin ) and blood group A are likely to have pernicious anemia . That pernicious anemia is rare is an utter myth . The intrinsic factor test is not 100% reliable . Fermented foods are rich in b12 such as Korean Kim Chi jacknorrisrd.com/b12-in-fer...
Beetroot contains cobalt and trimethylglycine which binds to homocysteine and helps the body expel it . Blackstrap molasses contains iron , b6 and lots of useful nutrients and minerals plus trimethylglycine which is an important methyl donor .CoQ10 helps the gut to absorb and is very useful for stomach problems . It is a harmless enzyme which also has protective properties for the heart .
The Scandinavian thing is really interesting. Thanks for the list of foods containing b12, I've read liver has a lot too.
I was gonna try Kim chi, sauerkraut before for the probiotic effect. Maybe I'll try blackstrap molasses too, funnily enough though my ferritin has always been on the high side.
Welcome to the forum, Cynosure. May I recommend that you buy (if you haven't already) a copy of Martyn Hooper's latest book on PA, "What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency", published by Hammersmith Health Books. It's a very good introduction to the whole subject.
As for methylcobalamin from B12d.org, other members have pointed you in the direction of Foggyme's post from a couple of weeks ago. I think the charity are planning to distribute methyl again, but only once it has been reformulated. The last batch was very painful to inject, but I've never had any problems with previous batches from them. I prefer methyl as it seems to have far more effect on my neuro symptoms, but I can only get hydroxocobalamin at present. Amazon.de is a good place to look for hydroxo, as the ampoules are available over the counter in Germany, and while we are still part of the EU there are no customs charges to worry about.
With regard to injections, I'd recommend you look at YouTube videos to help you decide whether you would prefer to inject subcutaneously (SC) or intramuscularly (IM). The former is perhaps the easier technique, but there are pros and cons for each.
I inject SC. After the first fortnight of mini-meltdowns and bruises caused by my lack of experience, I found it very easy. I haven't yet tried to inject IM, but I keep wondering if I should, just to get the B12 dispersed more quickly. I'd really prefer someone to show me in person how to inject this way, but I may just bite the bullet and do it anyway. Mind you, thyroid problems and menopause have given me a thick layer of podge to penetrate: does a long enough needle exist, I wonder?
Yes! I am still a very nervous self injector, (irrational fear of needles)especially after hearing about so many people saying their jabs r painful. Never once had painful experience with their methyl. So will stick with them
Not sure about the needles. Got syringes, needles online in uk. Cheap. Can't remember! Sure someone else will b able to advise. Methyl 1mg/1ml. 39.90 euro. 5mg/1ml 49.90. But if u go on their website u can see all. Should automatically translate to English. If not email them. They are very efficient. Be sure to use tissue to break off cap of ampoule to prevent nicking finger. If unsure Google it. Learnt a lot through trial and error!(and wasted ampoules/ needles)
Thanks, I emailed them and am awaiting a reply. I emailed intravita aswell and they sent me a price list. £33 for 10 ampoules of 1mg methyl and £40 for 10 ampoules of 5mg methyl. Postage is £8
Cynosure, I have an emergency stash left of just a few Arnika 5g/1ml methyl ampoules. They are easy to break open. They have a dot on the neck - just hold the ampoule securely in your dominant hand with the dot facing you and use a tissue or swab, as cefjarth suggests, to hold the top of the ampoule as you break it off in the opposite direction to the dot. Hope that makes sense!
I used one last night, because even large doses of hydroxo, with methylfolate to help convert it, don't really address problems with my vision or give me much energy. I find that after 5g/ml methyl, by the next morning I can see more clearly and with much less effort (though I suspect the slow accommodation and general haziness are permanent). I knew I had a very busy day today with a big delivery and a lot of prep beforehand without my husband's help. The methyl got me through it without being totally flattened; I was also able to read more easily and get back to some artwork. Wish I could use it everyday!
I don't want to be too negative about hydroxo, as it does address a few other of my PA problems, just not that well. People vary in their response to different forms of B12.
Thanks once again Hillwoman. I'm actually going to purchase some hydroxy first to raise my serum levels a bit before using methyl folate and methylcobalamin.
Oh and I'm glad you get good results with methyl! Why can't you use it everyday? Because it's harder to get a hold of? It's a shame that something so helpful for health isn't readily available
And I completely understood your description of the ampoules. I should be receiving my first ones soon, fingers crossed everything goes well lol
Thanks - the methylcobalamin and hydroxyl both had no real effects on me. I'm gonna try the one from biosciences. It is actually a lot cheaper as well.
One question, where do you get the saline solution from? And I just have to pour saline into the bottle of dry b12?
Foggyme, not trying to be argumentative or anything, just trying to understand - how can you tell it's not of injectable quality? If you scroll down to the description it does say "solution for injection" (in the original: Injektionslösung). Thanks.
Had a look at the link again and the description I can see (next to the product image) doesn't make any mention of 'injektionslosug'' I've scrolled down the page and can see more products but no additional product description (am I missing something?). 😖
So, the best I can say is that if it states 'injectionslosung' anywhere on a product description, then you're right, it will be of injectable quality.
Anything in a plastic pod described as sterile saline which does not specifically state injektionslosung (or suitable for injection), is simply sterile solution and not an injectable grade product. (Usually used for eye wash etc.).
There have been instances where this type of solution has been used for injections - and it's not something I would recommend.
I think the main thing is to be absolutely sure that anything injected into the body actually states on the instructions that it is suitable and intended for that purpose.
o by the time you get the ampoule it's been ages in solution and amber glass only cuts out 67% of light.
So what? It's only the energetic, short-wavelength, light that does any serious amount of photodegradation. And amber glass cuts out almost all of that. It's why photographer's dark rooms have red lights - they don't degrade the emulsion in B&W film.
Hydroxocobalamin and cyanocobalamin are much more resistant to thermal degradation. That's why they can be stored up to 25ºC. Methylcobalamin, OTOH, is more thermally labile and many manufacturers recommend storing it in the fridge.
People who are homozygous (2 copies) of the C677>T MTHFR mutation may benefit from taking methylfolate. If you take this then there should be no problem converting other cobalamins to methylcobalamin. That means you can take the stabler, cheaper, more accessible forms.
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