We are excited to inform our members that it will soon be possible to have the Active B12 test without a referral from your GP. The Active B12 test differentiates between Inative and Active B12 in your blood - up to 90% of your B12 level could be inactive, leading to the standard Serum B12 test misdiagnosing your levels as healthy.
We will update our members as and when we find out more, specifically where and how you can get this test.
The Pernicious Anaemia Society continues to campaign for a reform in diagnosis and treatment for Pernicious Anaemia and we thank everyone for their support in this! Remember that members can contact us via phone or email at any time for additional help and support as well as receiving our newsletter. If you haven't already registered as a member we would love you to, it helps add weight to our voice when campaigning on your behalf.
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This is wonderful news. Like many others I am supposedly 'within range' (at the bottom of the range), but like Pettals have many horrible symptoms and would like to find out the true picture. I will keep a close eye on your posts and hope I don't miss it wheni t finally happens. Ony hope it isn't too expensive! Thank you. x
It's around £20 to join, gives access to the helpline, downloads, etc. The forums are open to all and are very informative.
I did this and am forever grateful for all the info I got. Like you I used to have fatigue/falling sleep- no quality/nervous twitching/trembling/tingling (feet. legs, hands. up arms) Lost all these by using large doses sublingual methylcobalamin.
nostoneunturned, I am having similar problems to those which you experienced. Can i ask what amount the 'large dose' of methylcobalamin is which you are taking?
Hi, Johnners, and Pettals, I'll certainly tell you what I did but just please remember that I am not a doctor, I was just one desperate person whose GP did a blood test for B12 then phoned, said I was "marginally low" at 167ng/L (180-900) but I trusted him and thought "marginally low" was OK. I went on to develop 28 symptoms which only elicited GP's contempt for having kept a diary of what was going on.
Bear in mind that if you start on sublingual B12 that this will raise the B12 level and will therefore distort the results of subsequent B12 tests, to start will be your own choice. I had no option, nobody would listen, contempt and anger were showered on me. Dreadful.
I bought sublingual methylcobalamin, 5mg (5000 mcg) tablets, 60 per bottle, from Amazon. Another highly recommemded make is Jarrows, which has given many people success. Must be methylcobalamin, no other form, do not buy cyanocobalamin as this will not repair nerve damage which my symptoms indicated was already happening. I also bought methylcobalamin in spray form, delivers 500mcg per sprayPure Vegan B12.
The principles of the absorption of B12 by either sublingual or oral means, both different, are explained in Kevin Byrne's dissertation entitled "The Enterohepatic Circulation of Vitamin B12" available from the Downloads section of the Pernicious Anaemia site. Too long to explain, but basically he favours sublingual over oral. Sublingual: melt very slowly under tongue where there are membranes which absorb B12 and so avoid the intestinal route; oral, swallow with food.
My regime was to take 5 tablets spread out through the day, making a total of 25000mcg, or 25mg, per day, very carefully sublingually, do not crunch up! Does not work like that. Plus a couple of the 500mcg sprays daily. Sometimes I took 6 tablets a day, being rather desperate as the synptoms had rapidly being getting worse before I began this regime.
By the end of five weeks the symptoms had distinctly lessened and where before I had had to get up during the night and stamp around to try to mitigate the strong tingling and pains in feet, up legs, etc., I could bear the lessened tingling/pains better. By the end of four months of intense B12 therapy as described, all symptoms had gone, my twitching face muscles were the last to settle. My B12 level was above 1500, expressed as >1500. I now keep my level at around 1200-1300, and feel fine, normally energetic and pain free. Self finance blood testing at myrios.co.uk. but do check out Thyroid UK labs or others.
Kept up the regime for another 6 weeks just to make sure every symptom was gone, then I stopped taking the subl B12 but meantime concentrated on dietary means, with one Betaine Hydrochloride with Pepsin with main meal to increase strength of stomach acid in case that would help, threw out microwave as microwaving destroys B12, and learned of food sources of B12 -sardines, chicken livers (v high) liver (bumps up the folate levels - good) dairy products in all forms, red meat; sea fish..
I have had no supplementary sub-l B12 since April 2012 but monitored levels are still high, !000pmol/L (141 -489), divide pmol/Lresult by 0.738 which is the conversion factor, and this gives last level at 1355 ng/L (191 - 662). I would supplement at 2500mcg (splitting a 5000mcg tablet, twice daily sublingually as I/net studies indicate that should be enough, but remeber, I am no doctor.
This has worked for me but remember I did not have the usual tests for Pernicious Anaemia, just laughed at, but I found 6 months later that on the test giving 167 as my serum B12 level the lab had advised GP he should run tests for Intrinsic Factor and Parietal cell antibodies.
Trust nobody, always get copies of all blood test.
PS - used Swansons methylcobalamin as it was cheaper. Also GP did not quote any figures when saying i was marginall low, I learned the results six months later by which time i was a total cynic re some GPs. Not all though. v pleased with my hypothyroid treatment, though did learn from PAS B12 should be monitored in hypothyroid people. MIne never was until on knees.
Hi nostoneunturned, that is so helpful, thank you. I am currently having quarterly B12 injections for PA and on my last visit to the GP I asked if I could have them increased to monthly. As my B12 level had climbed to 600+ (after several years of treatment) she said it shouldn't be necessary to increase the frequency of treatment, despite feeling ghastly all the time.
My tiredness and sleeplessness symptoms (amongsst others) still persist but at least the GP agreed that I can go back after Christmas if symptoms are still evident to discuss treatment further. Meanwhile I'll start taking the sublingual B12 tablets, as you suggest.
Like you, I have completely lost faith with GPs who don't seem to have a clue how to look after PA sufferers.
She knows nothing. You should have much higher levels than this after all this time, no wonder you feel ghastly, I am so sorry. I know what you are suffering.
The Pernicious Anaemia Society at pernicious-anaemia-society.org will tell you on the helpline where your levels should be, certainly over 1000 if not more. Did you have the necessary loading doses of 1mg injected 3 times a week for 2 weeks?
As you have similar symptoms to those I had this means that you have neurological symptoms. The British National Formulary details how PA should be treated in Section 9.1.2 Drugs used in megaloblastic anaemias. Under Hydroxocobalamin I quote what it says, but the upper case letters are mine:
Dose
By intramuscular injection, pernicious anaemia and other macrocytic anaemias WITHOUT neurological involvement , initially 1mg 3 times a week for 2 weeks then 1 mg every three months.
Pernicious anaemia and other macrocytic anaemias WITH neurological involvement, initially 1mg on alternate days UNTIL NO FURTHER IMPROVEMENT then 1mg every 2 months.
Please note the differences between the two paragraphs.
I'll bet you have not been treated according to the second paragraph, as you should be.
You can access the BNF online at bnf.org, sign in etc as directed and you will have around half an hour to browse and print out. Or you can go to b12d.org/book/export/html/43 where the relvant chunk of the BNF is easy to print out. No wonder you feel so bad, I believe you are being chronically undertreated.
Please, if you find her intransigent even in the face of this information change doctors and get yourself treated properly as you already have nerve damage which could end badly for you.
Private testing of B12 and folate at myrios.co.uk is only £29 for one test checking both, and well worth it to know where you are.
If you have any other questions i will do my best to help.
forgot to mention folate - have you had your folate levels tested? You see, if you are deficient in folate the B12 will not be being methylised into the Active B12 the tissues need so the body will lose it through the kidneys. Folate should be around top quarter of the ref range. You should also be tested for ferritin, and the level should be around 90; and Vit D. aim for top quarter of the range.
Re Vit D, check out the Vitamin D Council just Google it.
Wow, nostoneunturned - your info is certainly an eye-opener. It may go some way to explaining why I have also been on medication for depression these last three years and lately have felt even less motivated than before, getting more tired and overweight.
Luckily, I have private medical insurance with my company so I shall get a letter of referral from my doctor asap and look forward to proper diagnosis and treatment (I hope).
It was only by reading an article in the paper, referring to a book on the subject, and visiting this forum, I realised I should still not be feeling the way I do.
I am so very glad to have helped you. If it were not for the Internet and the PAS we, and people like us, would sink without trace
Please learn all you can before any appointment, helpful books are "Could it be B12?" by Sally Pacholok and Jeffrey Stuart; "Pernicious Anaemia: the forgotten disease" by Martyn Hooper.
Martyn is the chairman and initiator of the Pernicious Anaemia Society, do join it, it is just invaluable, just £20 to get one's life back. A bargain!
Yes, I have been reading Martyn Hooper's book which is where I had many of those wondrous "I've also got those symptoms" moments which spurred me on to further investigate my problems. I certainly will join the PAS site now.
According to my 'GP' my folate and iron levels tested recently were "ok" (whatever she means by that). My thyroid results were also normaL
Mind you, this is coming from a surgery that said my blood test results were fine when I phoned up about them. But when I made an appointment to question the GP further about my levels she looked at all my results and said that the B12 and Folate ones had not even been tested - the most important ones! So there was another two week wait until I could go back and get the latest results.
The sooner I can get a referral the better, I think.
You have a right to copies of all blood tests, just ask the GP, they cannot refuse you, never accept their "normal" or "fine", a lot have not got a clue.
Thankyou for answering this query for us. Joining online is definitely the easiest method as it means you will be in the system to receive information from us such as newsletters.
Please remember if you have any questions or need information, any members are free to ring us during normal office hours.
Hi pettals, serum B12 which must be the test you had is not the same as Active B12, the test for which is still being rolled out. Active B12 forms a small fraction, somewhere under 15% I think, of the serum B12.
The MMA and homocysteine test will demonstrate a rise in their levels if there is not enough Active B12 in the serum B12. These two tests are rarely done - my GP had never heard of them, so promptly labelled me a hypochondriac. But I am a healthy hypochondriac now!
Yes, subl B12 worked, for me and many others. Please read Kevin Byrne's dissertation, and the other downloads, everybody will learn so much from them, I certainly did.
Would you mind telling us your B12 results with ranges? Folate levels should have been done along with ferritin and poss Vit D also plus a full blood count (FBC). My GP had at least tested folate (v high) and ferritin (low) no FBC but I worked on ferritin when I finally saw the results six months later
The body needs folate to use the B12 in food, folate is necessary for the methyisation of B12, that is why methylcobalamin form of B12 is so useful, it is already methylised so is readily absorbed and used by the body..
Hi pettals - I've seen some of your posts and know you've been going through hell, I'm so sorry that things have been so bad for you.
Not sure what my B12 blood level is right now but a couple of months ago it was 300 and something, down from 409 in March - so they say I am within range of course. With 692nmol I guess you would have no chance of any treatment other than what you could source for yourself.
The book 'Coud it be B12' is a real eye opener - that's where I first read that you could have a ton of B12 sloshing around your body, but active B12 could be much much lower.
I found that my D3 and ferritin were both abysmally low, so I expected the B12 to be low too - my diet is so restricted that I don't know where I'm getting even that level of B12 from, so wondered about the 'active B12' - but of course no way of finding out until maybe a glimmer of hope now, if this new test becomes available.
I'm like a prune too - but most of that is spare skin because I've lost so much weight. I did notice that most of the surface skin on my legs flaked and peeled off, which was pretty gruesome, but I don't think it was helped by sitting out in the sun - what there was of it - in an attempt to raise my Vitamin D! I didn't overdo it at all, but the skin still came off. Like giant dandruff - yeugh! Occasionally I also seem to get these rogue blister like things on my fingers where the skin just peels off - doesn't hurt, but weird. And an itchy lumpy red rash on my leg which drives me nuts. You're right, nobody wants to know.
I wonder if everybody counted up all their different strange symptoms, how many millions there would be.
I slosh gallons of moisturiser on my face, plus whatever cream is on offer at the supermarket, in hopes that I can prevent the skin peel from attacking somewhere visible Cream doesn't seem to make any difference to the legs though, just glues the skin back on temporarily.
I could easily put up with all these odd weird bits and pieces if only I didn't feel so lousy generally - its just the accumualtion of everything that gets hard to take. x
Maybe get tested for coeliac disease. It's what I had. Stops you absorbing iron, vit D, B12 etc, causes skin problems among a myriad of other symptoms. Have your thyroid (TSH & Free T4) checked too. All of these are autoimmune diseases and tend to occur together in people who already have one or two autoimmune problems like pernicious anaemia. Just came across your post now. So if I missed out that you already checked these things, just ignore. Best of luck.
Hi, pettals, I am told that it takes about 7 weeks to clear the system of supplementary B12. But do you have to clear out your system? You can have the Active B12 test anyway, which is not available to us just yet, it will tell you just how much Active B12 you have, which is usually about 10% of the serum B12 the current tests used check. I intend to have the Active B12 test when it is available even if I am supplementing then.
Whatt do you mean by saying you have "enough B12 in my blood"? How much and what is the range, please?
There's no way on earth I could get to London - unless I start feeling a million per cent better, which is ironic, because then I probably wouldn't need to. Oh well, thought it was too good to be true, for some of us anyway. But good news that it will be available for those who can get there.
The B12 book is quite scary, but lots of info in it. I can't recall if it says anything about your particular problem, but if you get it from Amazon and it's no use for you, at least you can return it.
Yeah, good old Vaseline. I like the little tins you can get with Aloe Vera and various other goodies in it. My husband is always nicking it for horrible dry flaky patches behind his ears no, I don't know why he gets dry patches behind his ears either.... x
It says on page 3 that 'talks are taking place between GSTS Pathology and Nuffield to see if the test can be carried out in all Nuffield hospitals throughout the UK' and 'Please note that GSTS require a referral letter from your GP before carrying out the test, for which there is a charge.'
I assume you'd have to pay at a Nuffield hospital anyway, and the GSTS bit wouldn't apply to me personally because I can't get there....but reading your post, just wondering if you have more up to date info from somewhere. From this it doesn't look like a done deal yet...
OK, just wondered. Guess we'll just have to wait and hope. No doubt if it does actually happen somebody will tell us about it....I so hope it does happen soon.
Hi Kangagirl and Nostoneunturned, the newsletter linked to isn't our most up to date one - the newest one is number 20 rather than 19. Kangagirl - are you a member? Only members can view our latest newsletters, via logging into the site.
Therefore that information is several months out of date, hence this post to let people know that the test will soon be available without a referral from a GP.
Sorry, I'm not too clear what you mean - do you mean that they would not know if you were absorbing any injected B12 you might be having? In the UK injected B12 is Hydroxocobalamin which has to be methylised in a process involving folate, which must be present in sufficient amounts, before Hydroxocobalamin then becomes useable by the body as methylcobalamin. I seem to remember that you have said that your folate has not been tested, it should be tested and the optimal result should be in the top quarter of the range.
I see that you are using Dr Mercola's Booster Spray. This delivers 1000mcg per 6 sprays so that if you are, say, taking the 6 sprays (1 serving) per day then you are only getting 1000mcg B12 as methylcobalamin extra a day. It is after all described as a booster, but nowhere does he claim that it is meant as a rectifier of deficent levels of B12.
If you are taking the 6 sprays spread out through the day then each spray is delivering only 1000mcg divided by 6 = 166mcg each spray.
According to Kevin Byrne's "The Enterohepatic Circulation of Vitamin B12" available from the Downloads section of the PAS site and which guided my dose decisions, it is necessary to take large doses of sublingual methylcobalamin to ensure a diffusion gradient steep enough to ensure absorption by diffusion through the cell wall. Diffusion occurs when the concentration outside the cell is higher than the concentration within the cell, therefore diffusion takes place from higher ouside B12 level to the lower inside level. This is why I took such seemingly high doses, 25000-30000mcg daily. I wanted to establish a sufficiently steep gradient constantly to ensure absorption by diffusion as well as by the membrane under the tongue. At least that is how I understood his dissertation, and it worked
To clarify: if someone takes supplementary B12, whether oral or sub lingual, and they have not had a diagnosis of either plain B12 deficiency or Pernicious Anaemia, then they might be found on testing B12 to have higher levels of B12 leading the doctor astray and his/her not doing further investigations.
Yes, ng/L is the unit in which NHS labs measure B12, mine does for instance. Most doctors would think that such a level, (yours - 692ng/L) which is of the total B12 in the serum, is OK. They do not take account of the fact that only around 15% of the serum B12 level is the Active B12, the form that is used by the body. So someone might be awash in what looks like high serum levels of B12 but in fact they might only have a very low level of Active B12 and so suffer symptoms indicative of a deficiency of B12.
You say in one of your posts that folate was not done, but it is essential that it be done, as folate is vital in the methylation of B12, methylation is the process whereby ingested or supplemented B12 is processed by the body to make the B12 into the Active B12 useable by the tissues.
Because of the necessity of there being enough folate, the guidelines to GPs include the need to measure folate, yours should have been measured. If folate is too low then there are difficulties in the use and absorption of B12 and conversion to the Active B12 form.
I have posted above to Johnners much information about sub-lingual B12 which can raise the B12 levels, including the clear distinction between the sublingual and the oral method, they are not the same. Sublingual B12 is absorbed under the tongue by membranes there and is also absorbed by diffusion into the cells. It is all explained in Kevin Byrne's excellent dissertation on "The Enterohepatic Circulation of Vitamin B12" available from the Downloads section on the PAS site. I also found a link in one of my posts to Johnners, which takes you to Martyn Hooper's blog where a Dutch person's comments confirmed the effectiveness of the use of large doses (25000-30000 mcg) daily.
You might not be converting enough of the B12 to Active B12 because of low folate - but you won't be able to deduce that is the possible reason for continuing symptoms until your folate -and ferritin - levels are known.
I understand that at the moment we do need a referral but the PAS Admin post of six days ago says that the Active B12 test will soon be available without a referral from a GP. Great news for all whose GPs are deaf (or worse) to everything we tell them. How soon is soon? Can't come soon enough for me!
Hi pettals, I'm sorry, I don't know what the difference is between the two! There seems to be so many different ways of measuring it (and everything else), and expressing the results, I don't have a clue if that's good or bad. I know mine was 409 of 'something', and then went down to about 375. It might have been the vit D that was in nmol (11.9), now I think back.
Anyway, my B12 wasn't seen as low enough to get any treatment, but injections helped me in the past so I'm pursuing that route on my own. It would be really useful to know for sure what your B12 status is, so I hope we are able to get the test soon, and without the 'dreaded referral'.
Hmm... well I sent away for the injectable B12 - you can get it from several sources apparently, but I came across it on a body building site - I don't know how dodgy these blokes are, you wouldn't believe what they do to their bodies, it's quite crazy. I certainly don't intend to do anything they do. I haven't heard of anybody else on here using exactly the same thing, but it seems to be all above board.
This B12 is a mix of Hydroxocobalamin and Cyanocobalamin, (more Hydroxo than Cyano) and is marketed as an appetite stimulator - which I certainly need if it's true, (so you don't need a prescription), and they say it can be injected subcutaneously OR intra muscularly. I don't think I would ever be able to do the intra muscular injections myself, but somebody on here very kindly sent me instructions on how to do the subcutaneous jab, with diagrams, which makes it much clearer than just a description.
It's not particularly cheap - but it seems quite strong, and I only intend to use a tiny bit at a time as I over react wildly to absolutely everything, so it should last a good while. I will pm you the website if you like. I got the short insulin syringes for subcutaneous use from Amazon, also recommended by another forum user.
I also got some much cheaper and weaker B12 (Cyanocobalamin) from Neem, the company who works with Dr Myhill on her transdermal sprays (I got my iron spray from them). I was quite happy with it being weaker because I didn't want to hit my system with a big dose of anything, bearing in mind how I normally react.
BUT - around the same time, my very nice endo was good enough to prescribe 3 1000mcg ampoules of B12 for me to try as a one off - or rather one on alternate days. I don't think she really believed it would help, but was prepared to try bless her. But she also just put 'syringes' on the prescription without specifying which type, so the pharmacy wouldn't get any. I wasn't too bothered because I already had the insulin syringes which I thought would be OK.
However, the pharmacist was absolutely horrified when I said I was going to inject it myself, (only told her because she asked), insisting that it had to be done intramuscularly - although I had seen on here and other websites that people do it subcutaneously with no problem. I practically had to fight her to stop her from phoning my GP and telling him, and she wouldn't even give me the ampoules until I promised to get the shots at the surgery. I lied. I didn't want the full 1000mcg all at once, and they wouldn't do it anyway. He had already said he wouldn't do anything about the B12 unless I had PA.
It would be easier to go out and get heroin than to get a B12 injection - how crazy is that.
So all the dire warnings from the pharmacist about what would happen if I tried to do it myself scared me into not doing anything at all!
Now I've got my nerve back a bit and I have made up my mind to look up those instructions again and have a go. It's just that I'm such a wimp that I'm afraid of doing anything that might potentially make me feel worse. It's stupid really. When you have both the pharmacist and the endo saying it MUST be done intra muscuarly, you do lose confidence, although you've seen in on here in black and white that others are doing it subcutaneously.
As a last resort, there is also the possibility of contacting the PA Society - if you're a member there are details of a doctor who can help with the injections - but that involves a long trip and more expense which I can't do at the moment.
So I'm basically awash with B12 and syringes - just got to get up the nerve to give it a go.
Let me know if you want me to pm you with more info on the B12. Hope this helps a bit.
I’m a new member. Could you please advise on how and where can I get an Active B12 test without a referral please? It would be great if you sent me this information to my e-mail address. Thanks in advance
Apologies for bumping, but is this still available? I'm looking to hedge my bets just in case my Dr doesn't refer me to St. Thomas. A B12 test without a referral might be the way.
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Cream doesn't seem to make any difference to the legs though, just glues the skin back on temporarily. 
no, I don't know why he gets dry patches behind his ears either.... x
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