Pernicious Anaemia Society
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Advice on supplementation please

My adult daughter has been diagnosed with PA (numbness was what alerted her GP-diagnosis quickly followed thankfully though I now suspect shes had it for 10 years as at she gave blood at 18 and was told anaemic then)

I then suspected my late mum MAY have had it. So, as I have had tinnitus for years, anxiety for many years too and ridged nails,had my level checked.Came back as 318 told it was fine.

As I have now done research I suspect I am low and would like advice on supplementation please

4 Replies

Your result is certainly in the grey range - not sure where you are based but you may find the following useful if dealing with a UK GP

Both these underline the fact that B12 serum isn't a test that can be used just on the basis of numbers - it needs to be interpreted and clinical presentation taken in to account.

Unfortunately most GPs wouldn't know the clinical signs of B12 deficiency - far to focused on anaemia so it can easily be missed

A check list of symptoms might be useful.


It is going to be impossible to get a proper diagnosis once you have started supplementing unless you are prepared to stop for 3-6 months (which most of us aren't) - so something to think carefully about and weigh up against the difficult of getting through to your doctors and the effect that deficiency is having on your health before you start.

B12d is caused by absorption problems

Various ways of treating include:

- flood the gut with high levels of B12 hoping that enough gets through (1% absorbed outside the ileum which is where the problems tend to occur)

- use other membranes, eg tongue (sublingual tablets/sprays), nose (sprays/drops - my favourite) or skin (patches)

The form of B12 can also be a factor as people respond differently to different forms of B12 - I use a mixture as they work on different symptoms for me.

You also need to keep an eye on your folate levels as the body needs folate to process B12 ... so these need to be in upper half of the normal range - food is the best form but if you have an absorption problem this may also affect your ability to absorb other nutrients.

If you have anaemia you need to watch your potassium levels as these can also drop when you start supplementing - bananas are a good source of potassium.

Symptoms can take decades to appear as the body is quite good at recycling B12 (though that becomes less efficient as absorption problem takes hold because it also relies on the ileum). I had 4 decades of depression and anxiety before I managed to get my B12 levels under control. Didn't believe there was a connexion until I noticed that the depression had gone a few months into treating myself.

One final word of warning - some people have problems with methylated forms of vitamins (generally a variant of the MTHFR gene) so worth approaching them with care and if you have a problem when taking them try switching back to unmethylated forms and see how that goes.

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I started having tinnitus, psych changes, nerve pain, fatigue somewhere around 408 pg/ml. By the 300s I had anemia and neuropathy, balance problems, confusion, etc. It does happen. I suspect it's more common than thought.

My GP still thinks B12 isn't a problem for me.

You may want to look into further testing before you start supplementing, so you have more information. Tests for anemia, homocysteine, MMA, folate, etc. (Supposedly homocysteine is a good indicator of B12 deficiency, but my homocysteine was always low despite B12 deficiency nerve problems)

If you self supplement, it's not a bad idea to start slow with small doses and building up as needed. That way you can hold off if you get side effects like hypokalemia or rashes. Not everyone gets side effects, but you won't know until you try, so there's no harm in easing into it. I had success with taking fractions of a sublingual tablet, waiting several hours, checking symptoms and side effects, then taking a bit more if needed.

Different people respond to different forms of B12 and different administration. Anecdotally, some people absolutely love methylcobalamin, but it can cause severe reactions in others. It's possible to react to hydroxo or cyano as well. Some people feel a difference between shot, sublingual, nasal spray, skin patch, etc.

You may have to experiment and see what works for you. That's why starting with small test doses isn't a bad idea.

I hope this helps and I hope you feel better!

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I've assumed you're in the UK.

My top tip would be to phone the PAS. They are helpful and sympathetic. The library section on website is useful.

pernicious-anaemia-society.... 01656 769467

For many years I had results similar to yours and ever increasing symptoms so my belief is you can definitely be symptomatic at levels that are within range.

The documents/articles that Gambit mentions make it clear that patients who are symptomatic for B12 deficiency should be treated even if B12 blood results are normal range. I found page 29 in the "BCSH Cobalamin and Folate guidelines", a diagnosis flowchart, useful.

Another useful article with interesting summary points.

Have you ever had an IFA (Intrinsic Factor Antibody) test? This is a test that can help diagnose PA (Pernicious Anaemia). It is not always reliable because you can get a negative result and still have PA.

There are also MMA, homocysteine, Active B12 (Transferrin) tests that can help diagnose B12 deficiency. If GP won't order them, they can be done privately. Just google. There is also a blood smear aka blood film that is rarely done on NHS but can show up abnormally shaped blood cells.

I tried my absolute hardest to get a diagnosis from the NHS before I took the decision to treat myself. I still wonder if I did the right thing because although I have improved it is now impossible for me to get a diagnosis from the NHS as my B12 levels are really high and although I should be tretaed becuase I'm symptomatic, doctors seem unaware of this or say I'm not symptomatic becuase my blood levels are high. I am faced with trying to supplement myself for the rest of my life with limited funds.

Other useful links

Site has good section on writing to GPs if unhappy with treatment.

Could It be B12 by Sally Pacholok Comprehensive book about B12 deficiency

Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

Living with Pernicious Anaemia by Martyn Hooper

I cried when I read this as it was like reading about myself.

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Hi Beew. I also came to researching B12 deficiency through autoimmune disease in our family. It was a revelation! Everything began to make sense when I realised B12 is involved in the construction of DNA. My mum came to this country before the war to escape poverty. She'd had rickets as a child and there was obviously little meat.

This explained so much within the family and I so wish I'd known about B12 def. years ago. My vegetarian sister became severely deficient after many years of misdiagnosis but is now on monthly injections and we both take Jarrows Methylcobalamin 5000 mcg sublingually (good reviews on Amazon for neurological symptoms).

As others have already indicated, if you suspect PA and absorption problems (and it sounds as though this could be likely with PA already in the family), it would be better to ask for further tests as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - "Could it be B12?" by Sally Pacholok and Dr J.J. Stuart. These links might help persuade your doctor to investigate further or treat on symptoms now:

Very few GPs understand the symptoms, only looking for anaemia and large red blood cells, which is the last stage, may never appear, or be masked by high folate. Devastating neurological symptoms can appear before this stage and, if it has reached this stage, (tinnitus, anxiety, etc.) you should be treated with injections aggressively without delay.

Here are more links you may not have seen: (List of symptoms and an excellent film) :

The above is latest BMJ research document with useful summary if GP won't read the whole document. It also tells your doctor that, once treatment is started, high levels in the blood do not reflect how effective it is. It is the clinical condition of the patient that's important...

Best wishes for a good outcome.


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