I'm always confused

[Popcorn12345]

I don't understand if you should or shouldn't take folate if you have low b12

[wedgewood]

When you are going to be tested for low B12 , you shouldn’t take Folate /folic acid because it can mask B12 deficiency.

[Popcorn12345 in reply to wedgewood]

I have had all my blood tests

[wedgewood in reply to Popcorn12345]

Then do take a modest supplement of B9 / folic acid ( 400 mcg ) daily if you are being treated for B12 deficiency and have been prescribed B12 in tablets or injections. It works with B12 . Best wishes .

[Popcorn12345]

Thank you. I'm not being treated. I am taking a sublingual b12 supplement because my doctor won't listen to me. I'm just supplementing myself to try and help myself but didn't want to take the folate unless it was safe to do do

[wedgewood in reply to Popcorn12345]

It’s not only safe , but adviseable . If that sublingual doesn’t help your symptoms ( but it can raise your B12 level ) you need injections . Is there a reason you can think of for having a low B12 level ? Did your GP question you to try to find out ? He/she should have . Read through this ——-

VCauses of Vitamin B12 deficiency .

Pernicious Anaemia is the most common cause of vitamin B12 deficiency . It is an autoimmune condition.Autoimmune conditions seldom come alone . The most common autoimmune “companion”of P.A. is a thyroid condition . There are over 100 autoimmune conditions

In P.A. the body turns on itself and produces antibodies which destroy the parietal cells in the stomach . These cells produce the Intrinsic Factor and stomach acid , both of which are essential to the process of absorption of vitamin B12 .

Atrophic gastritis , which thins the stomach lining causes Pernicious Anaemia .

Unfortunately the Intrinsic Factor Antibodies do not always show up in the test for P.A. ( Intrinsic Factor Antibodies test). This happens about 50% of the time in P.A. patients — Often takes several tests before they show up .. …. Often doctors do not have this knowledge , and conclude that a negative test means no Pernicious Anaemia . Symptoms must always be treated .

Pernicious Anaemia is incurable and must be treated FOR LIFE with B12 injections.The regularity required to keep symptoms at bay can vary from daily to 3 monthly .. It is not known why there is such variation in need. More research is needed . Tablets are NOT the answer.

OTHER CAUSES

Vegan or strict vegetarian diet .B12 is only found in meat, fish, dairy products and eggs.( some food stuffs are supplemented with B12 ) eg marmite .

Certain medications e.g. Metformin .Proton Pump Inhibitors ( P.P.I.s) There are others — look them up .

Gastric surgeries Bariatric and others .eg Gastric Bypass, Sleeve Gastrectomy. B12 injections FOR LIFE required . Also radiation treatment of the stomach .

Infestation of fish tape worm ( different to meat tapeworm) caused by eating raw fish or insufficiently smoked fish that is eaten uncooked .

Abuse of nitrous oxide ( laughing gas) Midwives should take great care when administering nitrous oxide .

As we age , we produce less stomach acid, which can lead to B12 deficiency..

There is definitely a genetic connection to be considered if you have relatives with Pernicious Anaemia , or you know that they have treatment with B12 injections.

Best wishes .

[Popcorn12345]

I have no family history of PA. I am not vegetarian.

The only test to come back odd was my borderline active b12. Everything else was OK. The doctor won't do anything about active b12 as not offered on thr nhs. They are very arrogant.

This is why I'm taking sublingual b12 in thr hope this will solve the problem.

I have no problems with my thyroid

[wedgewood in reply to Popcorn12345]

If the tablets don’t help , come back here and get to know how to self inject . Easy and cheap .

I recently had blood tests which included B12 . The NHS one included the bog standard blood serum test , which is reputed to include up to 80 % of Inactive B12 . This test showed my B12 to be off the scale at over 2000.

The private test was an active B12 test and came out as 150 So just over middle of the range ( 37.5 — 188 pmol/L) These tests were within 2 days of each other. Draw your own conclusions . ( I need toninject once a week to keep symptoms at bay.)

[Nackapan in reply to Popcorn12345]

What are your symptoms?

[Popcorn12345]

Why do some people need injections. Why don't sublingual work?

[Gambit62 Administrator in reply to Popcorn12345]

sublinguals work through a process called passive absorption - which happens outside the ileum - on average 1% of B12 ingested will be absorbed through passive absorption. However, that is an average and it isn't clear why some people don't find this effective. It isn't specific to PA but is common across all absorption problems ... and probably those who don't have problems absorbing B12 in the ileum but it would be difficult to check that because the ileum is so efficient at absorbing B12.

There are people on this forum who have PA but find sublinguals work for them, but there are also a lot that don't - and by its nature the forum is probably skewed to those that don't find sublinguals effective.

If you aren't folate deficient then you don't need to supplement folate. Folate, like B12 is absorbed in the ileum which means that people with B12 absorption problems are also likely to experience problems absorbing micronutrients - the most common are folate and iron - so tend to need to supplement.

[OldmanD]

Follow

[wedgewood]

If your B12 deficiency is caused by Pernicious Anaemia ,which is an autoimmune condition , it means that you have produced antibodies which destroy the parietal cells in your stomach . These cells produce the so called Intrinsic factor and stomach acid , both of which are needed to break down food and absorb vitamin B12 . This means that you cannot absorb vitamin b12 . Only 1% of b12 can be absorbed in the ileum without the Intrinsic Factor , So in this case tablets are not successful in being absorbed and injections are necessary — lifelong , as Pernicious Anaemia is incurable .

Same applies to damaged parietal cells caused by surgery and radiation therapy . Life long treatment with b12 injections . We all have varying requirements when it comes to regularity of injections. We don’t know why this is — research is needed . The medical profession has poor knowledge of B12 deficiency,especially when it comes to P.A.

Other reasons for b12 deficiency can be treated with tablets . Pernicious Anaemia is the most common reason for B12 deficiency.

Hope that this helps .

[Popcorn12345]

But sublingual with methylcobalamin should be able to be absorbed because it bypasses the stomach

[helvella in reply to Popcorn12345]

If everyone could simply take methylcobalamin sublingually, I suspect that this would have become universal by now.

Pretty much everyone has an interest in a non-injection approach other than the people who make lots of money out of beauty-clinic-like B12 injections.

I'm not aware that sublingual methylcobalamin can and does reliably enter the bloodstream in sufficient quantities that it can be used as treatment in those with Pernicious Anaemia or other direct cause of failure to absorb in the digestive system.

[wedgewood in reply to Popcorn12345]

Not everyone is able to absorb B12 Methylcobalamin sublingually if they have Pernicious Anaemia . I myself have tried because I didn’t want to inject . Some P.A. Patients are able to use sublingual tablets to top up between injections. But I don’t know of anyone with proven P,A. who is able to absorb B12 entirely sublingually , without any injections . That said , of course , doesn’t mean that no one can . But I’ve never heard of it , after reading posts for 10 years on this forum .

For other reasons of B12 deficiency , sublingual tablets would work , but also normal oral tablets would work , and plenty of food containing b12 like meat , fish , dairy products and eggs .

If you get no help with your B12 deficiency symptoms , after trying sub- linguals for a few weeks , try to again to get B12 injections through your surgery , otherwise come back here to find out about self - injection , which is cheap and easy .

,

[Popcorn12345 in reply to wedgewood]

Where do you get self injections from? How do you know it's safe?

[Cornwaller in reply to Popcorn12345]

Agree with the replies. In addition it is worth noting that b12 is a large and complex molecule and the absorption process is biochemically complex and so passive and sub lingual methods of absorption are, at best, poor. This helps explains why if one or more of the normal active absorption steps or tissues are absent then a serious, ultimately fatal, deficiency results and the only reliably effective method to replace the compromised route is to inject thereby by-passing the absorption problem.

[OldmanD in reply to Cornwaller]

Glad to see someone write about the problems with sublingual. . . . I just havnt the tech stuff to remember the whole story. . . . . Well written. . . . .

[Popcorn12345]

Most injections offered are cyanocobalamin and apparently that's the worst form. I just don't understand it all

[helvella in reply to Popcorn12345]

Most injections in the UK are hydroxocobalamin. Especially if provided via the NHS. To the extent that anything else would be regarded as departure from standard UK practice.

[OldmanD in reply to helvella]

SI as we perform would be regarded as departure from standard practice as would methyl. . . . . .

[OldmanD in reply to Popcorn12345]

Many use Cyano and worst is a very strong word . . . . . And I would not say everyone on this forum uses Hydroxo. . . . . . Many German labs supply both Hydroxo and Cyano. . . . . Bear in mind probably more of the world still use Cyano than use hydroxo . . . . . . Amazon.de usually have both Hydroxo and Cyano and I prefer Amazon as it has excellent return policies which I used once as the use by dates were only 2 months to go without problem . . . . . . I got the return label and away home it went. . . . . Withing minutes of me dropping off the package in PO I got notice of new dispatch which had good date .. . . . As best I see it is the same German Pharmacies selling on there anyhow. . . . . Probably suit them also as Amazon has logistics well sorted out. . . . . .

[wedgewood in reply to Popcorn12345]

Cynocobalamin was also used in U.K. until relatively recently . It is widely used in the USA . I would not knock it . It works well and suits some people . Our member Clivealive prefers it to Hydroxocobalamin. It’s just not suitable for patients with Lebers eye disease .

Hydroxocobalamin is reputed to stay in the system longer than Cyno

. At one time I used Methylcobalamin ampoules to inject . Expensive and difficult to find now . For me, they brought no advantage over Hydroxocobalamin .

[boisland in reply to Popcorn12345]

Popcorn12345 - The type of cobalamin used should be the one that works best for you. . Cyanocobalamin works for many people, some people find cyano to work better than hydro for them, others find hydro works better, yet others can use both forms. It is individual circumstance.

[Popcorn12345]

The NHS refuse to treat me and anyone else has said it would be cyanocobalamin

[wedgewood in reply to Popcorn12345]

We on this forum use B12 depot Hydroxocobalamin which is the B12 used by the NHS . It is a prescription only medication in U.K. , so we get out supplies of single use ampoules from German online pharmacies . In Germany , B12 ampoules are an over the counter item . I will send you the information.

Needles , syringes etc can be purchased from U.K. medical supply companies . You can inject I.M. ( intramuscularly ) into your thigh — the outside middle third , the Vastus Lateralis .where it is closest to the surface . Or inject subcutaneously into the front of the thigh .

The following reliable German online Pharmacies (all registered with the German Health Authorities ) will deliver VitaminB12 Depot ( Hydroxocobalamin)single use ampoules to the U.K.

vesandapo.de( in Leipzig) Site is in German . Use Google Chrome for translation . This is usually the best value pharmacy.

Courier cost €9.99

apohealth.de ( in Munich) Site available in English . Union flag , bottom left on my device .

Courier cost €20.00 for 10 packets . Lower cost for fewer packets .

apotheke-marienbrunn.de( in Leipzig) Use Google Chrome for translation . Also deliver to Australia , New Zealand and USA.

juvalis.de Use Google Chrome for translation

First of all register with the pharmacy .

When filling out the address form, you will see that the country is already filled out with Deutschland / Germany .You must first change that to your own country by using the drop-down list to — U.K., United Kingdom , Vereinigtes Königreich — however it is expressed.Do this so that your post-code and the rest of your address is accepted . Otherwise,you will be unable to order , and you will be tearing your hair out

amazon.de also sell Pascoe and Hevert . But depending on the supplying pharmacy, may or may not supply to the U.K. You can’t use the Pharmaceutical reference numbers to order from amazon.de . You must use the brand names .

The following brands are usually available.

PANPHARMA ( formerly Rotexmedica)

1mg x 1 ml ampoules b12 DEPOT ( Hydrocobalamin)

Packet of 10

Pharmaceutical reference number 16199653

Most popular ampoule . Good value , but often out of stock .

PASCOE b12 DEPOT packet of 10 —1.5mg x 1ml ampoules

Reference no. 075686672

Packets of 10 x 10 ( 100 ampoules ) Reference no.07568695

The Pascoe are much cheaper per packet if you buy the offer of 10 packets . If you inject weekly or more frequently, you will be covered . Otherwise , the ampoules may become out of date .

HEVERT B12 DEPOT 1mg x 2ml ampoules 1 packet of 10 reference no. 06078368

HEVERT B12 DEPOT 1mg x 2ml 10 packets (100 ampoules ) Reference no. 06078380

Use the Pharmaceutical Reference numbers to order from the pharmacies, it’s easier , but not if buying from amazon.de

The above brands also produce Cynocobalamin B12 single use ampoules. They are cheaper than Hydroxocobalamin., but reputed not to stay in the system as long. Fine to use as long as the patient does not suffer from the rare eye-condition called LEBERS. Cynocobalamin is widely used in the USA I do not have the Pharmaceutical reference numbers for the Cynocobalamin ampoules..

PLEASE BE AWARE OF THE FOLLOWING .

Now that the U.K. has left the EU , there is a limit to the value of goods that we can order before tax is due .Tax is applicable if the value exceeds £135.00 ( roughly €158.00) Value does include delivery cost . On top of that , Royal Mail charges £8.00 for handling

I’m not sure how much the tax is , so please look it up .A member was quite shocked at what she had to pay when she exceeded the limit . YOU HAVE BEEN WARNED!

With best wishes .

I’ve not assembled information on how to obtain needles and syringes yet .

Information can easily be obtained . Also information on self injecting .

[Natural1970 in reply to wedgewood]

Excellent. Just the information I have been looking for. I'm now going down the SI route. My GP will only let me have 3 monthly. I definitely need more frequent. Thanks for your post.

[Nackapan in reply to Popcorn12345]

The NHS use hydroxcobalamin. Cyanocobalamin was used prior to this.The only reasong for the change was it is supposed to last for longer.

Even with unproven PA b12 injections are often the only thing that works .

I tried sublingual high doses and high dose tablets both need to be absorbed in the stomach

Wish they had worked but did nothing apart from waste my money .

Have the NHS done further tests to get to know the cause of your symptoms. ??

Also to eliminate other things ??

Folatw us tested at the same time as serum b12 .

So you shoukd have a level .

Only folate deficiency needs s large short term dose of folic acid. 5mg

Otherwise 200-400mcg sufficient for s maintenance dose daily.

[OldmanD in reply to Nackapan]

I'd agree with you. . . . . . But . . . .Does anyone have the actual like data on the "supposed to last longer" thing. . . . . I have read it so may times and I have tried both and still have both and for the life of me cannot see any advantage or disadvantage of either . . . . . . Methyl for me was a big a waste of money also . . . . . Were the Health services yet again "sold" somthing. . . . . .

[Popcorn12345]

They tested MMA and was fine. I had a negative intrinsic factor and paritial cell. Serum b12 was fine. The only thing low was borderline active b12. The doctor won't recognise active b12 result so says I am fine.

[Technoid in reply to Popcorn12345]

Maybe I missed it but I can't find anywhere that you described your symptoms. What kind of symptoms do you have?

MMA is the most specific test for B12 deficiency and if it's not elevated, many medical professionals will assume from that, that you don't have a B12 deficiency (although there is no gold standard test).

[wedgewood in reply to Popcorn12345]

Having a negative intrinsic factor test does NOT mean you don’t have P.A. ! Your GP should know this . About 50% of PA patients have a negative test . This is acknowledged in the guidelines for treatment .

[MrsTuft]

you should take folate if you have low folate.

[FlipperTD]

Scientist, not medic.

Folate should not be taken when deficient in B12 AND untreated. B12 replacement should be started before folate is commenced.

You don't state what your symptoms are; neither do you appear to have any abnormal results from those quoted.

The fact that your GP doesn't acknowledge a test result [active B12] that isn't provided by the NHS isn't a surprise, but given that even that is within range I'm on the side of the GP this time. Cyanocobalamin is widely used and trusted. Use of other cobalamins has support in some quarters, but cyanocobalamin is a stable and safe product.

Good luck!

[MorningMist]

A more accurate test than serum folate is red cell folate which shows your folate uptake over the past few weeks. Serum folate rises and falls rapidly with diet.

[ReallyWondering]

I’m in the US and I self inject cyanocobalamin weekly. I was diagnosed with pernicious anemia and autoimmune atrophic gastritis six months ago. My folate levels are high so I don’t take any. None of my doctors told me to take it either. The tingling in my feet just stopped recently and all my other symptoms (fatigue, brain fog, constant heartburn) are gone. It took 6 months of shots. I haven’t had any problems with cyanocobalamin. If your folate levels are high, why would you need to take it?

[JHEW0836 in reply to ReallyWondering]

Can I ask what your B12 level was when you were diagnosed? Do your doctors know you self inject? Have you been on weekly shots the entire 6 months? Trying to figure out how frequently I need injections. I too have a high folate level and have had injections for a year. I still have some symptoms but have not had as frequent of injections as you.