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Pernicious Anaemia Society
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DAILY VITAMIN B12 ORAL SPRAY

Hi there

I am new here.

I have been recently diagnosed as being deficient in Folate and have been prescribed a 3 month course of folic acid.

My blood results are:

VITAMIN B12

Serum vitamin B12 level 478 ng/L [197.0 - 771.0]

Serum folate level

Serum folate level 3.1 ug/L [4.6 - 18.7]

Below low reference limit

Low serum Folate, Suggest folate supplements

However, I know that the problem is deeper - the tingling in the extremities, loss of feeling in my heel, the drowning fatigue that follows me around, the depression and sadness for no reason - I am constantly fighting to keep on top of my emotions, the itching, low level panic attacks, the feelings of being overwhelmed, the memory loss, paranoia, anxiety .. and on it goes.

So, I am starting to take the folic acid - a 3 month prescription.

I am also taking a vitamin B12 oral spray (just two days in) - and I am starting to feel alive again - my mood has lifted dramatically. I understand from others in my position that my body is unable to process B12 through the normal digestive processes.

Because my vitamin B12 levels are seemingly okay, I do not think for one second that the GP will consider B12 injections - so I have taken it into my own hands.

I realise that I have got to wait until my Folic levels are up before considering self injecting.

I would just like feedback on the oral spray route.

I am terrified of not doing anything about the B12 supplementation - I don't want to risk any more damage to my mind or body.

thanking you all in anticipation ....

12 Replies
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Hi jacjc

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Do you eat plenty of leafy green vegetables? Sprouts, broccoli, asparagus, spinach peas, beans etc are all good for Folate plus many breakfast cereals are now fortified with folic acid.

Whilst your Serum vitamin B12 level 478 ng/L would be classed as "normal" you will be doing no harm to yourself by supplementing with the oral spray and you may never have to inject.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

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Hi Clive - thank you so much for your prompt reply.

My diet is good, I honestly can't understand how my Folic levels have fallen so low - but I will make a conscious effort to up the sprouts etc.

I am hopeful that once my folic levels are up that my body will process B12 more efficiently.

I do not have coeliac disease but I am gluten intolerant - so I have also, just recently, decided to go gluten free - which hopefully will improve absorption.

Once again, thank you.

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Hi - make sure you take methylfolate & methyl b12. Also get tested for MTHFR gene mutation - for more go to mthfr.net. I just learned this about myself. Good luck!

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at the very least that should be the other way round - no point in forking out on expensive formats if you don't need them ... and as far as methylcobalamin goes there is very little evidence that you really need it even if you do have MTHFR variants - even if you have two copies - and even some people with MTHFR respond very badly to methyl folate or find that it has no advantage for them over and above cyano and hydrox.

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I have heard you say this before Gambit. Where is the evidence/articles/studies. I would appreciate the info :)

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This is a link to a diagram explaining the involvement of various enzymes in the methylation process.

puregenomics.com/methylatio...

MTHFR uses B2 (riboflavin) as a co-factor, not B12.

B12 is used in conjunction with other enzymes at other steps in the process

MTHFR in genetics refers to specific gene mutations that control the MTHFR protein and how efficient the cell is at converting B9 and THF to 5-MTHF

That's why B12 isn't really relevant to MTHFR - though related genetic variants can make it relevant to other steps of the methylation process.

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I would be wary of taking folic acid prescribed by the GP. NHS always use the cheapest option. As far as I am aware, we need Folate (not folic acid) - Folate is found in foliage (hence the name) And Folate levels tend to go up and down (blood test a snap shot in time) depending on the meals we have just eaten (that's according to my GP) Not sur if we can store Folate - no idea! presume not as human development so consistent with eating foliage or eating animals that have grazed on green grass/leaves.

Google Folate rich foods and stuff yourself with them. Folic Acid needs conversion to folate in the body. For those who can't convert this is a massive problem

See Chris Kresser nutritional clinician /functional medicine practitioner (Functional medical doctors/practioners aim to find the root cause of a patients problem not just react and give out a prescription) Did your GP offer to find out why your folate is so low? No I bet not! Google Chris Kresser Folic Acid V Folate

If after reading you wish to be Folate - go to Amrita Nutrition .co .uk (Seeking Health brand)

I have not had a problem with folate but admire Dr Ben Lynch who owns the brand and has been a cutting edge expert on the methyl cycle (find video info on you tube) He developed own brand as no product that he could refer his patients to. Is this ethical - I am not sure but I would rather buy a brand from a knowledgeable researcher/expert than just any commercial company.

I buy my 'Seeking Health' B12 tiny disolve in the mouth tablets from Amrita. They are so tiny - not much bigger than 2 pinheads. I buy the 5000mcg B12 which is methyl and adenosyl. Your body will hopefully convert methyl to adenosyl when required by your mitochondria. We need methyl and adenosyl forms of B12. If we have symptoms I see no point in not giving our mitochondria a helping hand by providing some adenosyl B12

Our mitochondria need support, they are our life force - probably the first life form evolved. They are present in most cells, hundreds in heart cells or any organ cells that require energy - so most but some have just a few and others hundreds if not thousands. If your mitochondria fail then your health fails and you start getting symptoms in 'which ever' organ pathway or usually a multitude of pathways. Which is why B12 (methyl cycle) deficiency exhibts with many different symptoms across many different pathways.

Also ask your GP for a homocysteine blood test - when you next see. Instead of GP practice nurse taking blood, GP requests straight on to the comp system and you just go to the local hospital for blood draw of all your blood tests needing taking (check by phone that their labs test for homocysteine) some do some don't. It is easier as don't need an appointment for hospital blood dept. But test should be fasting.

Homocysteine is converted into methionine if your B12 is getting into cells and working. You can have a good B12 level in blood but no active B12 getting into cells. Homocysteine test ia good test which indicates whether B12 is working for you.

Ignore normal level range (is an average so includes sick peoples blood ranges) you want optimal healthy range as a guide. Homocysteine should be no higher than 8 ideally 6 or 7. B12 in working in your cells and so effective will lower homocysteine levels. Be prepared to explain this to your GP and why you are requesting. I have symptoms of B12 deficiency dear GP so this is why I want the homocysteine test. GP may not even have heard of! But is available on NHS.

See Food for the Brain website for info

foodforthebrain.org/alzheim...

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Hi there Lynne

I want to thank you very much for your response.

I am away from home as I write so sorry for the delay in getting back.

I can see that I have a lot of research and learning to do.

I am concerned about the reason for the folate deficiency, my diet is good .. but there is always room for improvement. I prefer the natural route and will adopt some permanent lifestyle changes. I will have to as I am feeling quite poorly as I write.

Once again, thanks, and hopefully we can stay in touch.

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Of course, hope so too :) I have re read my reply. Thought I was a little confusing re folate. Do read the Chris Kresser Folate V Folic Acid. What i meant to get across is that some people have an issue converting the synthetic lab made compound of folic acid (put in vitamin supplements and prescribed by our GPs) That is the massive problem I referred to, as a build up of the synthetic isolated derivitive will cause harm.

My opinion, why take the risk of Folic Acid - it's not in any natural recognizeable form. if you can't convert the synthetic stuff, well then your body doesn't recognise it - why should it. Your body is intelligent and has evolved to use folate from natural food sources containing all the compounds that work naturally together - vegetation.

Especially if you may be having B12 issues so possible methylation cycle issues I would not take Folic Acid. Why not just boost your folate rich food consumption for a couple of months and re test blood level folate again to see if you have got it into a healthy range. Surely your GP cannot refuse re test, she found it was low and you both need to know it has risen. And if so, you know to keep eating those foods in those amounts. But even if your level has not improved sufficiently you still need to eat for folate. But then your levels may indicate that you need to supplement as well so I would think it would be best to take a natural folate supplement. (Seeking Health - from Amrita website would be my go to) You can make your own mind up when reading up on.

I have a nutribullet (approx £70) slim, doesn't take much room up on worksurface, you need it there and handy. Fill the cup with great fruit and veg and water - I now use coconut water in mine for added minerals. Just put in the organic fruit and veg that you can buy and whiz for approx 20 secs and you have your homemade smoothie. Needs to be organic as the nutrients being broken down are more accesible to the body. You don't want herbicides and insecticide toxins being more readily absorbed. The nutribullet takes no washing just rinses out in seconds.

Apple cored but with peel on is a must as it sweetens your smoothie. other great veg to use are fresh beetroot (organic sold in Tesco) cucumber, celery and a peeled kiwi is great for zinc and flavour and a few berries - you won't have room for many in the large cup. All these you can easily get organic. Pour into 2 glasses (don't leave in plastic unless taking to work, then the nutribullet cup with lid is handy) You may not like the veg but made into a smoothie taste totally different - I add level teasp or less of powdered ginger spice. Or other good for you spices (thyme, rosemary, lemon balm/ fresh or Waitrose sell organic powdered spice)

Always ask for a print out of your blood tests/any tests from the receptionist. Do not accept being told 'oh it is normal' you need to have the numbers and look up yourself. Can also refer to compare previous tests

I started my health learning journey with listening to Chris Kresser his articles and podcasts. If you want to know anything eg bone density or BP, cholesterol etc. I use green med info website (Sayer Ji, researches the research) so google say Magnesium greenmed info or whatever you want to no more about. Similarly Chris Kresser. Chris Masterjohn another fantastic researcher - delves into absolute detail re vitamins and minerals. So explains optimal levels, iron, cholesterol, B12, K2 Has a brilliant 'K2 resource' for info, foods containing etc. Functional doctors/clinicians - the cutting edge folks who know what works for their patients/also scientists, researchers in the health field are often interviewed/ conferences - so check out James Maskell's Functional Forum. I will post a link to one functional forum and the Chris Kresser Folate article also. Also Functional Forum's conference in Guernsey 'Journey to 100' is a great watch and a lot to learn. It makes you realise that there is a movement out there focusing on helping us all improve our health. Just that the NHS hasn't recognised it yet. But it is said by most researchers that it takes on average 17yrs for accepted acknowleged agreed research to filter down through to the hospital consultant/GP and change practice !!! Bloomin Ummer.

Just be aware that your brain/body is not going to work well without sufficient magnesium - food source mainly fruit and veg. Can buy magnesium sprays for skin absorption the best way to absorb. Also soak in hot epsom salt bath (no toiletries)

Also vit D (high up blood levels of 125 nmol/L or higher if have health symptoms) Everything works together. Vit D is a fat soluble vitamin so requires other fat sol vitamins. So A, E, and K2 - note K2 not K1. You can usually get enough A and E from food but K2 (MK7 usually needs supplementing) K2 (Mk 4 ) usually get enough from cheese eggs grass fed meat fat) Always have vit D blood test to see where you are. If decide you need to supplement, I use 'Natures Answer' vit D3 drops - 2000iu per drop easy to take every day - I take 2-4000 per day if I dont get in high sun that day. see you tube video Dr Hollis Researcher of vit D for 30 yrs, I will post also as have. Worth watching. B12 methylation needs Vit D. Vit D helps body absorb calcium so you need vit K2 to make sure the enzyme pathway is activated and calcium is escorted to where it needs to go majorly bones and teeth otherwise it will gravitate to soft tissue and muscle - you don't really want stiff heart tissue or hardened arteries to the brain. We all get calcium from food so we all need sufficient K2. Most people are deficient in K2.

Lastly Low Folate (if eating fruit and veg and so not the reason) can indicate absortion problems in intestinal tract. I asked my neighbour who was diagnosed at 59 with coeliac/gluten intolerance what prompted her GP to send her for endoscopy when she had just gone to the GP with feeling tired. It was the low Folate measurement that made the GP consider.

I know with my family history and so research that I have done that the current UK testing for coeliac/gluten intolerance is abissmal /stoneage. Unless intestines are really damaged - they will not find. There are a min of 60 gluten proteins. The NHS test for antibodies against 2. Also 50% of people with an issue with gluten do not have the HLA DQ2 or 8 gene - so that tells you nothing either. Cyrex labs in London can more definitively test - are able to test for antibodies to 14 gluten proteins but costs hundreds of pounds.

However professor Marsh (established the Marsh test for gluten) state that if they could have gone into the brain as easily as the digestive tract, that coeliac would be known as a brain disease. Also WGA in Wheat negatively affects the brain. See Dr David Perlmutter's book Grain Brain/you tube videos. Cardiologist Dr William Davis - Wheat Belly/you tube. The experts state that wheat is more addictive than heroin. Which is why food producers who know this, put it unnecessarily in many foods so that you will re buy. And why people hate the idea of giving up wheat.

Having low folate and brain issue symptoms. I would definitely read Dr Perlmutters book grain brain. Watch you tube videos of Dr Tom'o'Bryan - he organised the Gluten Summit some years ago (2013? ) interviewed 20+ of the worlds eminent gluten specialists from around the world. His website thedr.com has videos/also many on you tube. Then make a decision as to how important it is to you to remove Gluten and most grains from your diet. That's the very first thing I did.

chriskresser.com/folate-vs-...

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Jacjc The video talk re vit D I mentioned

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Forgot to mention Books to read Kate Rheaume Bleaue 'The Calcium Paradox, a little known vitamin that could save your life' And British practising GP/was on the European Board for Cardiology so not your average GP Dr Malcolm Kendrick, his books 'The Great Cholesterol Con' and his mind blowing insight into health practices 'Doctoring Data' Also here is the Functional Forum health conference I mentioned youtube.com/user/functional...

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I will only speak for myself, but my low folate has been totally addressed by using the much cheaper folic acid daily, in addition to my fortnightly B12 injection. It may be worth trying first.

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