I will try very hard not to be ramble, but like many others with this condition, the journey hasn't been a straight one. Fifteen years ago I was diagnosed with ME/CFS. As many will know, there is no test for that; diagnosis is reached by assessing clinical signs. Overwhelming fatigue and brain fog were dominant, the 'classic' joint pain less so. Since then, a focus on nutrition, carefully judged amounts of exercise and a range of supplements have kept me ticking over, but life was very much sub-optimal. In the past eighteen months things have nose-dived.
An even worse level of fatigue was joined by pins and needles and numbness in hands, burning sensation in legs, 'catching' on the ground with front of feet when walking, balance problems, forgetting words, blurred and 'darker' vision, marked deterioration in motor skills and coordination, memory and concentration (concentration is shot, I can't read books anymore) depression and irritability, dizziness and a distressing inability to breathe comfortably, manifesting as 'air hunger'. Added to that are tinnitus, insomnia and glossitis.
I have had a history of gallstones, successfully and completely controlled by diet. In Oct 2023 I had a six day episode of acute abdominal pain of a subtly different nature to the gallstone type. I was totally unable to eat or sleep. After 3rd day, I went to A&E querying pancreatitis. I was denied tests and sent home with two paracetamol(!)
Reading up on the subject, B12 deficiency of some sort seems the likeliest. Just before Christmas I had full bloods done through Blue Horizon. I had a nurse come to do the blood draw as a pin prick test would not have been sufficient.
Active B12 was 147 picamols/L, Folate 10 nmols and vitamin D 49 nmols. Bloods seemed unremarkable, although RDW was 15.6. Ferritin level was 146ug/L, and thyroid levels were fine.
However, for years I have taken B complex tablets giving me B12 25μg (1000%NRV),and folic acid 400μg ( 200%NRV). Also vitamin D 50μg (1000%NRV). If I had known then that supplementation would distort the results I would have acted differently, of course. The past few weeks have been a learning curve, and this site has been invaluable.
I wasn't used to reading bloods, and hadn't picked up the fact that the B12 was in picamols, hence I thought it was low.
Since then I have seen my doctor and presented him with my symptoms (cried a bit as I feel so awful). He said he would order full bloods. I did warn him that the B12 levels would be skewed by supplements but he said he wanted a 'baseline'. I felt I had to humour him, and the results have just come back. Serum B12 is just over 2,000, Folate is thirteen and vitamin D is now 29. RDW has gone down to 13.
He has zoomed in on the vit. D and says I need to supplement orally. I'm sure I do, but although a deficit can certainly result in symptoms, glossitis isn't one of them and, together with the others listed, my issues seem to me more indicative of B12 deficiency. Having known that the B12 reading would be useless I had continued to supplement, adding sub-lingual tabs and oral spray to the array. That would certainly have pushed up the figures. I figured that, as a number of my symptoms are neuropathic and could become permanent, I wasn't prepared to let them drop any further if I could get any B12 into my system passively. Certainly, I have taken enough B12 make a difference if I could absorb it. It hasn't really altered anything though.
Big question is.....why such a high level with no benefit? According to Dr David Morris who gives a very helpful video presentation on B12. vimeo.com/891099138/4150efa06b Most ME patients can't methylate B12. Is that part of it?
My doctor also ordered IFAB and Parietal antibody tests, which haven't come back yet. I have warned him that the specificity levels are only about 50%. and I have reminded him that the current guidance is that, with neuropathy present, IM B12 is advised without waiting for test results. I have a feeling he is just getting more sceptical.
I don't have the expertise or experience to unpick this. Can any of you clever people advise?
I lost enough of my active life to what I was told was ME/CFS. I can't afford to lose any more.
If anyone has got this far I thank you in advance for your patience in reading this!😊
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Rolloliveson
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Hello, and welcome. Thanks for the informative post. Whilst I can't answer the why, I do absolutely think you are on the right track. Your vit D is horrible, so you should be getting a prescribed high dose to get that back up to a good level as soon as possible, and no doubt it will help with some of the symptoms, but the bulk look like B12 to me. I did the same as you, took oral/sublingual/sprays etc as I knew I needed it and it helped, but it also skewed my bloods. Eventually I was offered a trial of injections (with serum B12 at 2000) and it is a game changer. You need to try injections, and it may be that you would also benefit from trying a small dose of methylfolate instead of the folic acid. B complexes also often contain the inactive form of B6, pyridoxine, rather than the active form P5P. Personally I use methylfolate and P5P.
This paper looks at the benefits of regular B12 injections for those with CFS, ME, Fibro - you may be able to get a trial of loading doses and then weekly injections (at least) on this basis, even if your GP will not follow neurological symptom guidelines
It talks of MTHFR, which is one of several enzymes which can be affected by genetic polymorphisms (SNPs/variants). It is by no means the only thing relevant to these complicated folate cycle/methylation/one carbon metabolism processes (and my own SNPs are mainly other than MTHFR but in the same sort of areas). I dislike that they only look at using higher doses of folic, rather than a lower amount of methylfolate or folinic, which are generally less problematic, but it is still an interesting paper.
You could ask for methylmalonic acid and homocysteine to be tested, but as you probably know, those may also be 'normal' and you still have a treatable cellular deficiency.
Thank you for the very prompt reply. I thought it odd that he didn't prescribe the vit. D as it needs to be a high dose one, but I am ordering a Better You spray type one with 3,000 D and K2, as I got on with their B12 spray. I will take an extra spray to make it up to the safe maximum of 4,000IU.
You are quite right; I checked the label of my B complex tablets and the B6 is pyridoxine (the B12 is cyanocobalamin) so I will stick to the spray (methylcobalamin) and the sub-lingual tabs, which contain Hydroxocobalamin, Adenosylcobalamin and Methylcobalamin. I will look for the P5P and methylfolate.
Out of courtesy really, I am waiting for the antibody results but, either way, when they are in I will make a firmer request for the injections. It is useful to know that they are therapeutic for the ME too. If I get a refusal I will start looking at the self -administered route. I'm pretty needle-phobic but anything is better than putting up with all this.
Once again, thanks for your help; it is much appreciated.
Thanks for your detailed reply, and the tip about Grassroots. I looked up their calculator for loading doses and it is clear I need to start on mega-high doses. I think I will nag the GP for a prescription for a liquid form. If I took it in tablets my stomach would be full of bulking and anti-caking agents.
I wonder how many patients have been mis-diagnosed with ME? In the early days certainly I think they just tended to give people antidepressants and bundle them out of the door - and I agree about doctors; a sense of vocation seems much rarer nowadays. All jobs have their difficulties, but I think keeping a sense of curiosity about your chosen field must help. Answers aren't always easily available - but asking better questions always helps.
My pleasure. Better You are good, I use their magnesium spray. If possible, use the 4000iu with K2 daily for about 10 weeks (to give you the c. 300,000 iu that you should have been prescribed - a family member has just been prescribed an initial 40,000 iu weekly for 7 weeks ) then retest (which you can do as a fingerprick postal test through an NHS lab via Better You if GP won't) - we all vary quite a lot in how well we absorb, some really easy, some terribly slow, and although you want the D to be good, you don't want it to be excessive. Once you know how well you personally absorb, you can fine-tune your maintenance intake to keep you at a reasonable level. ( I was told not to assume that anything below 125 nmol/L was ok, so I aim for that and vary between about 100 and 135 nmol. Careful with units as US use ng/mL. Multiply ng/mL by 2.5 to get nmol/L. Anything above 200 or 250nmol and you might be heading for toxicity, so worth testing and getting a feel for your own requirements.) And SI B12 is nothing like as hard as you might think, if you need to go that route. Lots of good advice here. Best wishes
I'm short of time now, sorry, but will ping a quick reply: all vitamins and minerals are inter-dependant and a shortage (or excess in some cases) of one can cause deficiency symptoms of another, just because it can't work properly because the thing that's short becomes the "limiting factor".
There's a good chance that if your vit D is low, your B12 will not be being utilised properly.
You could try some methylfolate to give you the methyl and see.
All B vitamins can cause tongue issues, especially B2.
I have mouth issues and pop blood vessels if my vit C is low. They can't/don't test for that but it responds well to supplements if that is a problem so it's easy to tell.
You get 11/10 from me for your diet! 😃
Your B12 levels suggest you are getting plenty into you, but once in, your body isn't utilising it properly.
I wish you luck with finding out what works.
I hope this helps.
PS lots of hospitals are hopeless about pancreatitis, unfortunately - even if you have a dx of chronic pancreatitis and associated conditions and you know exactly what you need for help. Only a few specialist places are really worth going to. If you want to find out if your pancreas is working ask your GP for a fecal elastase test. They usually will do them as they are relatively easy, cheap and reliable.
Thanks, lots of good advice there. I admit I was shocked by my reception in A&E; they weren't even busy at the time. I don't make a fuss easily (gallstone pain can be really unpleasant) and I've had root canal excavation on an abscess with no anaesthetic at all, but he wasn't having any of it!
These symptoms could also be caused by diabetes type two so it is important to have a test for HbA1C which will give you your average blood glucose over the last 3 months. I have both PA & diabetes type 2 and have to carefully monitor and treat both. I do a finger prick test of the glucose in my blood first thing every morning and it must be below 7 mol/mol. I inject B12 intramuscular ever other day. The diabetes I keep under control with a low carbohydrate - low fat diet.
I had a look at my bloods (I had a well-woman full bloods panel, as I didn't want to have to go back and test things I'd forgotten), and my HbA1C result was 34. You're right to ask, though. Some years ago I was sitting down having eaten a bar of chocolate, and was alarmed at how fast my heart began to race. I decided to put the brakes on there and then. I gave up all sugar except that in fresh fruit, and I cut out all fast carbs, as they break down to sugars. Bread, pasta, cakes, biscuits, pastry, potatoes and rice all eliminated for a year. I ate oats but not too much. I felt so much better. I still stick to it broadly. I think sugar causes inflammation on a cellular level, it makes so many illnesses feel worse.
Try B12 injections every other day. You have so many symptoms that the rest of us have. If it helps then keep doing them for life at a schedule that keeps your symptoms at bay.
Better You sprays are good. For vitamins C B1 B2 B3 B5 B6 B7 B9 and B12 as one easy pill in the methylated forms I take Igennus Super B-Complex.
I take vitamin D too.
I self inject B12 every other day too. I officially get it every 8 weeks from the NHS.
I honestly think your health is more important than being good and doing what the GP says. I would go to a beautician, dentist, whoever, to get an initial B12 injection, you need to know you don't react, then DIY. You will soon know if injections make a difference.
You don't say how high your homocysteine is. B12, B9 and B6 are needed in the body to process homocysteine, part of the protein recycling that goes on in the liver. If your body doesn't process it, it binds to fat and gets stored leading to non alcoholic fatty liver disease, ldl cholesterol artery blocks, type 2 diabetes and will probably be part of your gallstone trouble. The l-methylfolate made a big difference for me, having been told to take folic acid by the doctors. Just be prepared for a rough time when your system has a major clear out. I had a fever and appeared to poo pure fat!
As for high serum B12 not functioning, throw this one at your Doctor.
Other changes you can control, don't use fluoride toothpaste, Aloedent is good.
Don't go anywhere near glyphosate (B12 is the antidote to glyphosate poisoning). Grain crops and soya are desiccated with glyphosate pre harvest, oats are particularly laced with it, so get organic oats. Use (Amino poly) phosphate free washing powder, cleaning products and shampoo etc. Anything that binds to phosphorus could potentially disrupt B12.
Thanks for the good advice. I was looking at the homocysteine tests just as your reply came through. From what I can see, they are about £150 - there were a couple of cheaper ones but I wasn't sure how good they would be. The doctor texted me at the end of the week to say it was 'good news' and that the Ifab and Parietal tests had come back negative. Well, I had warned him that they were only 50% specificity so I'm not exactly overwhelmed by his good news, considering how rough I feel. I think now I will just go ahead with taking care of it myself.
Many of us here have a ME/CFS/Fibromyalgia diagnosis in our medical history.
In UK, ME/CFS is supposed to be a diagnosis of exclusion ... meaning it should not be diagnosed until all other possible diagnoses have been excluded.
Unfortunately, I suspect few GPs have the resources to exclude all other likely diagnoses so B12 deficiency can get missed.
Many of us have met health professionals with a poor understanding of B12 deficiency.
I was diagnosed with ME/CFS/Fibro and virtually all the symptoms improved after B12 treatment started.
I left some very detailed replies in these threads which i think you'll find useful eg B12 websites, suggestion of UK B12 documents to read, links to help those struggling to get adequate B12 treatment in UK etc
Some links may have details that could be upsetting to read.
I owe you an apology, I think. I meant to reply thanking you, but it slipped my - not very reliable - memory and I've had a bit of a crash since. I certainly wouldn't have thought you abrupt - I know how diligent and helpful you are with your posts.
I think a number of us with previous a ME diagnosis must feel rather cheated. I had no tests at all other than routine 'full bloods' with a serum B12 check. On that basis I trudged on thinking nothing could be done. Antidepressants were the only thing on offer and I chose not to take them. When I think what could have been done in those fifteen years with normal energy levels.....
Still, I have to look forward rather than back. My GP, the one who originally diagnosed me, is following the 'party line' and resisting the idea of B12 shots. I am getting worse, noticeably so even in the past few weeks, and I can't afford the risk of the neuro issues becoming permanent. I need at least a piece of my life back. On that basis I have contacted a doctor privately in Cambridge - you may know who I mean. We are not wealthy, but an hour's consultation is worth the cost to prevent any further loss. We have talked on the phone and I have sent him some records. His view is that I have Functional B12 Deficiency and, depending on a face to face consultation, he is happy to give me tuition on self-injecting and to explain the set-up regarding supplies. I am trying not to place all my hopes on this but, guardedly, I am anticipating a beneficial result.
When I have got the practicalities sorted out, I will be posting again. I have come across a couple of interesting things in my research. It has certainly been a crash course in B12 issues.
I think we all understand what it's like to live with long term fatigue.
I wrote a long reply and then lost it (dodgy internet) so check back as I hope to add more to this reply later.
I thought you might find this thread interesting.
It discusses why some forum members report deficiency symptoms with normal/above range serum (total) B12 or normal/above range Active B12 (holotranscobalamin).
Is there a link between functional B12 deficiency and functional B2 (riboflavin) deficiency?
I recommend searching online for and reading these documents if you haven't already...
1) "NICE B12 deficiency guideline" - published 2024
I have reservations about the above document. My personal opinion is that there is too much emphasis on using high dose oral B12 as an alternative to B12 injections.
NICE stands for National Institute of Health and Care Excellence.
3) Try to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England. Health Boards in Wales/Scotland. Sometimes the advice in these local guidelines differs from that in NICE documents so worth knowing what you're up against locally.
If you can't find them online then best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
It's also possible to submit a FOI request to your GP surgery but bear in mind that this may irritate them and affect GP/patient relationship.
Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).
His most recent article was an overview of diagnosis and treatment. Might be a good one to pass to GP.
Search for "Wolffenbuttel overview B12 2024" to find it.
In my personal opinion he's one of the few doctors who understands B12 deficiency.
4) B12d.org online talks may be of interest to GP.
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New blood test results, is this possible?
high levels of B12 in blood
I am so happy
Advice please 
