Testing for B12 deficiency or PA

[Nadia1987]

I am a newly registered healthunlocked member and I have come from the thyroid forum and I have these results

I have coeliac as well

ferritin 12 (15 - 150)

folate 1.7 (2.5 - 18.5)

vitamin b12 197 (180 - 900)

vitamin d 20.6 (<25 severe deficiency)

I have these symptoms and signs from the pasoc link given to me by a thyroid member

tinnitus

tremor

numbness and tingling and pain

confusion / disorientation

weakness

of legs, arms, trunk

impaired vibration

abnormal reflexes

unsteady or

abnormal gait / falls

ataxia

balance problems

difficulty

walking

dizziness

restless legs

visual disturbances / decreased-blurred vision

forgetfulness

memory loss

intellectual deterioration

paralysis

impaired fine motor coordination

muscular spasticity

bladder or bowel incontinence

impaired pain perception

nocturnal cramping

disturbance in taste and smell

confusion/disorientation

psychosis

hallucinations

memory loss

delusion

depression

suicidal ideation

mania

anxiety

paranoia

irritability

apathy

personality changes

sleep disturbances

insomnia

changes in taste, smell, vision and sensory/motor function

generalised weakness, fatigue

breathlessness

pallor

jaundice

chronic facigue

vascular problems

orthostatic hypotension

postural hypotension

female infertility

loss of appetite/weight loss or anorexia

epigastric pain

irritable bowel syndrome

constipation

gerd

mouth ulcers

dry cracked corners of the mouth

premature

greying

swollen / sore tongue

fainting/light headedness

chronic pain disorder

increased

susceptibility to infections

poor

wound healing

malnutrition

skin hyper pigmentation and hypo pigmentation

How do I go about testing please?

Thankyou

[clivealive Forum Support]

Hi Nadia1987 did your doctor run the blood tests - the results of which you posted above?

[Nadia1987 in reply to clivealive]

Thankyou yes he did

[clivealive Forum Support in reply to Nadia1987]

Hi again Nadia1987 I'm not a medically trained person but assuming you are in the U.K. I'm guessing that your doctor reading your results on his computer screen will see that your Vitamin B12 level at 197 (180 - 900) is flagged as "Normal" so has thought no more about it whereas in reality you are "bumping along the bottom", you are low with ferritin and deficient in Folate as well as Vitamin D.

I know nothing about about thyroid problems other that they (among many others) can put you at risk of developing a Vitamin B12 deficiency.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. Your Folate is only 1.7 (2.5 - 18.5) so is very low.

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, salmon, orange juice, avocado, and milk

To prevent a vitamin B12 deficiency, take a vitamin supplement or incorporate foods high in vitamin B12, such as beef, liver, seafood, fish, cheese and eggs, into your diet.

That's fine as long as you don't have an absorption problem with your stomach.

However your list of symptoms suggests the need of a more radical treatment. Firstly, some of them may be related to your Vitamin D deficiency so I'm amazed if your doctor has not prescribed a supplement for that - or haven't you seen him/her yet?

Secondly (and remember I'm not medically trained just one who has had P.A. for 45 years) ask your doctor to treat both your symptoms of low B12 and Folate levels in accordance with the N.I.C.E. Guidelines.

google.co.uk/url?sa=t&rct=j...

Click on the link, then on "Scenario Management". This website "tells doctors" how they should treat their patients with B12 deficiency.

Thirdly, although the treatment is virtually the same, it is possible to be B12 deficient and not have Pernicious Anaemia as the causes of P.A. require specific testing. Your doctor may want you to be tested for that.

You asked "How do I go about testing please?". You already have the necessary test results to start with.

Make a list of your symptoms and present this to your doctor together with the guidance notes and ask him to treat you according to your symptoms and start you on loading doses of Vitamin B12 injections "until there is no further improvement".

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

​I wish you well and hope you get the treatment you need and deserve.

Hopefully there are others on here who will be able to give you some good advice and I wish you well

[Hidden]

Hello Nadia1987, coeliac disease causes damage to the intestines and this will over time cause malabsorption of essential nutrients, including B12. Your ferritin, folate and B12 are all far too low and I am not surprised you are suffering with so many symptoms. Ideally a full blood count would be useful, MMA (methylmalonic acid ) and tHCY (Homocysteine) and also good indicators of B12 deficiency but these are not routinely done. If you have a malabsorption problem then you will need B12 injections to bypass the intestines.

Cassie

[Polaris]

Hi Nadia. As you probably already know, B12 as low as yours can cause many symptoms, including neurological problems, which you are experiencing, and should be treated urgently with B12 injections as per BNF guidance - "every other day until 'no further improvement."

Here is a very helpful site with list of B12 def. with guidance on what to do next as well as templates for writing to your GP, if needed,

b12deficiency.info/what-to-...

Also, latest BMJ research document on PA/B12def. with useful summary if GP won't read the whole document - it might be a good idea to take someone's close for extra support to your next appointment:

cmim.org/pdf2014/funcion.ph...

The following document also stresses the importance of early treatment :

stichtingb12tekort.nl/weten...

"Early diagnosis is essential if treatment is to be effective, for the reversibility of neurological symptoms is largely dependent on their duration. The brain lesions which form part of the neurological syndrome of vitamin-B12 deficiency, although they have been recognized for more than half a century, are still much less familiar than those which occur in the spinal cord and peripheral nerves, to which by long usage the term “subacute combined degeneration” has been applied.

And in 1960 The British Medical Journal published A.D.M Smith - "the necessity for making the correct diagnosis cannot be overstressed, as delay is extremely dangerous and the condition eminently treatable, provided cerebral demyelination has not occurred.”

Very best wishes Nadia for a good outcome.