Quick PA query

[linesandlines]

Hi All,

is it possible to have adequate serum B12, but still have PA? If so, how would you go about finding out if you had PA - persuading GP to do follow up tests etc?

many thanks

[Sleepybunny]

I have read that it is possible to have severe B12 deficiency with normal serum levels,

Recent UK documents make it clear that people who are symptomatic for B12 deficiency should be treated even if serum b12 levels are normal range.

see

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate Guidelines"

Have you contacted the PAS? Lifetime membership costs £20.

pernicious-anaemia-society.... 01656 769 717

Other UK B12 websites

b12deficiency.info/

b12d.org

martynhooper.com/

Useful B12 books

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by martyn Hooper

Could it be B12?: An Epidemic of Misdiagnoses By Sally Pacholok and JJ. Stuart

[linesandlines in reply to Sleepybunny]

Many thanks for all the links Sleepybunny  - lots to look at!

[deniseinmilden]

Others with more knowledge will answer your question but I have had severe deficiency symptoms without a PA diagnosis and know there are a lot of people who just say they are B12d, rather than having PA.  

I believe mine is an autoimmune illness but it is likely I have a genetic predisposition to it too. 

My serum levels were low before treatment but even when they are high through supplementation I can experience very bad symptoms due to the B12 not metabolising properly at cellular level.

One way of finding out if B12d is the problem is to supplement (after you have tested for it).  This is safe to do unless you have cancer.  If you feel better then this would suggest it is the, or one of the, problem(s).  If not then further investigation (vitamin D deficiency, thyroid, folate, etc) would be required.  

Good luck with finding out! 

[linesandlines in reply to deniseinmilden]

Many thanks deniseinmilden . Looks like some kick ass supplements are my next purchase!

[clivealive Forum Support]

Hi linesandlines ,

Do you know what your serum b12  and folate levels were and the ranges used?

Are you vegan or vegetarian?

Have you had gastric surgery?

Are you diabetic and on Metformin?

Do you use antacicds or are you on proton pump inhibitors for acid reflux?

Have you had surgery or dental treatment where nitrous oxide has been used?

These are just some of the many and various reasons why you b12 levels can be low.

What symptoms do you have that make you wonder whether you have P.A.?

I am not medically qualified but there are others in this community who will be able to give better advice.

[linesandlines in reply to clivealive]

Hi and thanks, clivealive  

tests in the last week put me at:

B12: 508 [196-771] and 304 [250-725]

Folate: 11 [4.6-18.7] and 24.5 [10.4-42.5]

(There's two sets of results because private thyroid tests overlapped with NHS tests.)

So my results look fine, really.

PA was not something I had ever considered until someone on the Thyroid page here suggested it, but I do have all the symptoms. The reason for my question about serum levels vs PA is that I recently did the 23andme gene sequencing, and it was noted that the genes for conversion of B12 are all defective. (Sorry, about to dash in to a meeting, so I can't be more specific about the actual genes)

In terms of your list of potential causes of deficiency, only the Proton Pump Inhibitors apply, and even then, it's been nearly a year since the last dose.

[Gambit62 Administrator]

Suggest you draw your GPs attention to this alert on going on just the numbers in a B12 serum test

ukneqas-haematinics.org.uk/...

It list the tests that can help to clarify.

This applies predominantly to the grey range - but even outside the grey range it is possible to have a deficiency at the cell level - its called functional B12 deficiency

[linesandlines in reply to Gambit62]

Many thanks Gambit62  - any evidence to persuade the GP it's not galloping hypochondria is always very useful.

[clivealive Forum Support]

Hi linesandlines ,

Your original question was "how would you go about finding out if you had PA - persuading GP to do follow up tests etc?"

Sadly I don't know what the current procedure would be as I got my diagnosis 42 years ago (next Tuesday) having undergone a "Schillings Test" whereby I drank a glass of radioactive B12 and the amount passed through my urine was measured. I was threatened with having to eat raw liver three times a day but fortunately had the option of B12 cyanocobalamin injections every four weeks for the rest of my life.

Things have moved on since then but again, sadly, even modern day tests are not very accurate.

Below is a list of P.A. Symptoms a lot of which will be mirrored by B12d perhaps noting which apply to you and presenting that list to you doctor might be a first step.

1.1 General Symptoms

The following general symptoms are common in those with PA:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 Abnormal yellow colouration of the skin (jaundice)

 Heightened sensitivity to hearing, smell, and taste

 Vision distortion, e.g. seeing stars, or double vision

 Breathlessness

 Headache

 Cankers (ulcers) in the mouth

 Sleep disorders

 Intolerance to loud sounds, flashing lights

 Intolerance to crowded malls (needing personal space)

 Tinnitus – ringing in ears

1.2 Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

1.3 Gastrointestinal Symptoms

The gastrointestinal symptoms of vitamin B12 deficiency may include:

 A sore tongue

 Appetite loss

 Diarrhoea and/or constipation

 Stomach pain

There is life after P.A. as I'm now coming up to 75 and I wish you well for the future.

(if you would care to read my P.A. Story click on my clivealive name).

[linesandlines in reply to clivealive]

Happy(?) Anniversary clivealive ! Thanks for your advice, and given the choice between raw liver and injections, it sounds as if you took the righteous path.

[Lilnicki]

Sounds like it could be functional B12 deficiency...... This was my problem, serum B12 level 605 , but difficient in the tissues.

[linesandlines in reply to Lilnicki]

Thanks Lilnicki , having looked at your previous posts, it does sound very similar to my current situation. How did it end up?

[Lilnicki]

Eventually found a neurologist prepared to trial injections, alternate days for 6 months 👍🏼

[linesandlines in reply to Lilnicki]

Brilliant! Well done for your persistence. You sounded really quite down and frustrated in your posts from a couple of years ago. I hope it's helping?