Is it possible to have PA when B12 and haemoglobin test are in normal range? My B12 level is just over 600. I've had chronic fatigue and IBS for nearly 20 years, and whilst the IBS has been pretty much cured by taking high doses of kefir for 6 months, the CF just doesn't get any better. I started taking a general vitamin B supplement 3 weeks ago, and there was an improvement in my energy levels and brain fog - enough to stop me falling alseep at my desk, but not enough to allow me to function as a normal human being. I've tried enough things to tell the difference between placebo and real effects, so I know it's real. The tinnutus and tingling feet are still there. My GP refuses to try the B12 injections.
Any advice would be greatly appreciated.
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mouldy63
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The symptoms of B12 deficiency overlap with a number of other conditions, which includes folate deficiency.
600 (either ng/L or Pmol/L) is a high result for serum B12 and one that wouldn't often be associated with a B12 deficiency. The most likely cause of a B12 deficiency is an absorption problem - and this would reduce your ability to absorb B12 significantly - to a small fraction of normal so unless the supplements contained very high levels (150mcg) of B12 they are unlikely to have made any difference to your serum b12 levels.
Did they contain folate? what were you folate levels like in your last blood tests.
The tablets give me a daily dose of 1mg B12, so well over 150mcg. The GP said this wouldn't affect the blood tests, which is an indication of her level of ignorance I guess.
do you know if your blood work showed any signs of anaemia.
presuming that the b complex wasn't prescribed by doctor - if you mentioned a b complex they were probably thinking more about the doses you get in general supplements which are much closer to RDA and would not have made a difference if you had an absorption problem.
Unfortunately its likely that you would have to stop taking supplements for several months now to get a proper base line for B12, or for the other tests - MMA and homocysteine to show up anything. IFA is still a possibility but would mean no supplements for 10-14 days.
Repair of nerve damage is very slow and can take years but the fact that you have noticed some improvement in other symptoms suggests that your B12 levels may be building up again.
I ordered them from the US, as they were the ones featured on the BBC program 'Doctor in the House' dealing with a guy with chronic fatigue. They are expensive, and B12 injections would be cheaper.
If my B12 blood levels are good (possibly due to these tabs), but I still have chronic fatigue, might that indicate that the tests have measured predominately inactive B12, and that I have a problem converting it to active B12. If so, do I need an active B12 injection, not the usual inactive one?
Yes, it is possible to have PA/B12def. with these levels.* BMJ research document summary below, as well as * UKNEQAS.
Although your B12 levels are within range, symptoms do suggest PA/B12 deficiency and, being neurological, should be treated as BCSH (BNF) guidelines, 'every other day until no further improvement', especially as you also suffer from CFS and IBS.
I don't know if this might help convince your GP to do further tests but, otherwise you may find it necessary to resort to self injecting.
"Autoimmune chronic gastritis (AIG) is an organ-specific inflammatory disease leading to gastric atrophy, hypochloridria, and eventually to pernicious anemia. AIG is characterized by lymphocytic infiltrates in the gastric mucosa and by destruction of parietal cells, resulting in mucosal atrophy (15). In most AIG patients, serum anti-parietal cell autoantibodies (PCAs) are detectable"
The above latest BMJ research document is supported by many research papers, has a useful summary* and information about further tests.
It also tells GP that, once b12 treatment is started, test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....
My saved BMJ document has changed itself to Spanish! 🤔
and I can't access it anywhere but here are the summary points:
"Vitamin B12 deficiency is a common but serious condition
Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment
There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance
There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency
If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features."
Thanks Polaris, that's very useful information. I now have to decide whether to persist with my GP, or go to a private practitioner. Can you recommend a private practise?
After decades of Crohns with resection I had some strong anemia symptoms i.e., inability to draw enough air, brittle nails, headache. X-rays showed no lung disease so I began B-12 self injections weekly for six weeks my headaches and breathlessness are gone however my blood test was about top normal scale. The VA doctor refuses more monthly shots.
The supplement I take daily contains 1mg. If it were possible to raise blood B12 levels adequately with supplements, why is injecting the recommended method?
Eaoz, 100mg is the recommended upper limit in the US, 25mg is the recommendation in the EU and 12.5mg is the recommended upper limit in UK.
Studies have shown toxicity and neurological damage from use over time but not aware of a study that showed damage occuring with doses below 100mcg.
mouldy63 you need to bear in mind the possibility that your CF may not be related to B12. The full details of the case in Doctor in the House were never given so its a bit dangerous to assume that what helped him will also help you. There were some genetic factors involved for him but even those weren't expanded upon.
Personally if I was looking to high dose B12 supplementation I would look for something that was just B12 - there are a number of things in the tablets you are taking that could cause toxicity if you take too much.
Trouble is that I've had the CF for 17 years, had every test going, and they never find anything. I'm at my wits end TBH. B12 deficiency seems to be the most common cause of CF, and the standard tests seem unreliable. The B12 injection is low risk, so that's what I'm trying to get. Just want to be sure I get the right type of injection.
I appreciate that this is all very difficult and hear your desperation.
As far as I am aware B12D is not a cause of CFS - but is one of the things that should be ruled out when diagnosing CFS.
CFS is a potential misdiagnosis of B12 deficiency and I believe there are studies that show that patients with CFS can benefit from B12.
Injections are only needed if you have a problem absorbing B12 from food - ie something wrong with your gut. Otherwise you should be able to absorb it from tablets and that would make the difference. Even if you needed high doses because of a problem somewhere else in the process of metabolising B12 - which would basically mean a genetic problem that means that your body isn't as efficient as it should be in using B12 in one of the processes that happen at the cell level - then you should still be able to get enough by taking high dose tablets without needing to resort to injections.
Possible absorption problems include PA (though the test for this is notoriously prone to false negatives - 40-60% of time depending on the assay method so a negative is a long way from proving that you don't have PA), coeliacs, crohn's, h pylori infection and various drug interactions.
Very high dose oral can be as effective in maintaining B12 levels even in patients that have B12 absorption problems as a very small amount of B12 is absorbed outside the ileum but exactly how much varies from person to person.
Unfortunately even going private doesn't guarantee that the person you see will be prepared to look into B12 injections - though, particularly if you are UK based it might be easier to find someone who was able to look more specifically at whether there are any genetic factors that are affecting your ability to use B12 and leading to the problems.
What makes me think it's a B12 deficiency is that I have responded to supplements, and I have many of the symptoms, including many of the neurological, neuropsychiatric, vascular problems & gastrointestinal; albeit some are very generic symptoms, but things like the tinnitus and tingly feet seem fairly specific. All these years I've focuses on my IBS, assuming the CFS is a result of it. And whilst the IBS is almost gone, the CFS is still bad, so maybe they have a common cause. Who knows.
But my gut remains very sensitive, and the B vitamin supplements are aggravating it enormously, so much so I have decided to discontinue them, as the net effect is negative, and I'm feeling better already. The positive response I have had makes me determined to pursue this, so I'm left with under the tongue supplements, or injections. I'm assuming the detrimental affect on my gut is due to the tablets in my digestive system. If it's due to the extra B vitamins in my blood then I'm stuffed!
I've read a lot of interesting articles, and understood some of them, but it's all very confusing for the non-medic, and a lot of it contradictory. It's clear the tests are unreliable at best, which makes me wonder why the doctors rely on them exclusively, and are blind to actual symptoms. Surely the proof of the pudding is in the eating, and since they injections are cheap and low risk, I don't understand the reluctance to use them. As ever, the short sightedness of doctors drives people into the hands of charletans and purveyors of snake oil.
I was diagnosed with ME/CFS in 1992 after feeling very unwell for 8 years after the Epstein Barr Virus. I had numerous health issues after that time. In recent years I have been diagnosed with Ehlers-Danlos type 3, Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation. I would check out the possibility that any of these could be the underlying condition. Autonomic dysfunction, which led to POTS, gives all the symptoms of ME/CFS and a growing number of people seem to have links with these other conditions.
Hey mouldy63, have you had your thyroid checked? Also, it is normal to have normal labs with PA but eventually your B12 will drop & you will need B12 injections. You're doctor won't give you injections when you're labs AKA blood counts are normal. Too much B12 can hurt you or kill you. In the meantime I know how to get you're energy level up. Take a vial of the her Ginsing when you awake. You can take a extra one a hour later if you're still tired & foggy brain. Also Ginko Biloba with Gotu Kola is great for the brain. Take everyday with a 8oz. of water 30 minutes before eating your first meal. It takes about 3 weeks before you notice a big difference. I hope this helps you.
Not to disagree with anything that anyone has said already but to add to it, my understanding is that a deficiency of any B vitamin can affect energy levels, and it's possible that the benefit you were seeing from taking the multi-B vitamin was due to you being low in some other B vitamin. Here are a few websites which discuss B vitamins and fatigue in case it's useful:
If you have gastric problems then you cannot absorb B12, you can have good levels of it in your blood but as the specialist explained to me it need the stomach functioning well to absorb and convert it, I’m coeliac so have B12 injections and supplements regardless of my blood test results, tinnitus and your other symptoms are a big sign to get injections, I self inject as my my doctor is great and onboard with me but in the Uk beauty salons ect now offer injections, you can google the b12 stomach link for more info
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