Diagnosing PA

[Catriona1505]

If I have these symptoms of B12 deficiency

Tinnitus

Tremor

Paresthesia - numbness, tingling and pain

Confusion / disorientation

Weakness of legs, arms, trunk

Impaired vibration - position sense

Abnormal reflexes

Unsteady or abnormal gait / falls

Ataxia (Neurological disorder affecting balance, coordination and speech)

Balance problems

Difficulty walking

Dizziness

Restless legs

Visual disturbances / decreased-blurred vision / damage of optic nerve

Forgetfulness, memory loss

Dementia / intellectual deterioration

Impotence

Paralysis

Impaired fine motor coordination

Muscular spasticity

Bladder or bowel incontinence

Impaired pain perception

Nocturnal cramping

Disturbance in taste and smell

Neuropsychiatric

Confusion/disorientation

Psychosis

Memory loss

Depression

Mania

Anxiety

Paranoia

Irritability

Apathy

Sleep disturbances

Insomnia

Changes in taste, smell, vision, and sensory/motor function which can be mistaken for psychiatric problems

Haematological signs and symptoms

Anaemia

Macrocytosis (large red blood cells)

Generalised weakness, fatigue

Breathlessness

Pallor / jaundice

Chronic fatigue

Vascular Problems

Orthostatic hypotension/ Postural hypotension (low blood pressure when standing, which can cause fainting and falls)

Postural orthostatic tachycardia

palpitations

Female

Infertility

Gastrointestinal - signs and risk factors

Loss of appetite/weight loss or anorexia

Epigastric pain (poor digestion, bloated feeling after eating small or normal sized meals)

IBS - Irritable bowel syndrome

Constipation

GERD - Gastric reflux disease - ulcers / mouth ulcers

Decreased stomach acid

Gastropareisis

Malabsorption syndromes - Crohn's disease, coeliac disease etc)

Additional Signs and Symptoms

Dry cracked corners of the mouth

Premature greying

Glossitis - swollen / sore tongue, geographic tongue

Fainting/light headedness

Symptoms mimicking Parkinson's and MS

Nominal aphasia - difficulty recalling names or words

Increased susceptibility to infections

Poor wound healing

Malnutrition

Skin hyper pigmentation or hypo pigmentation

And these results

FOLATE 2.3 (2.5 – 19.5)

VITAMIN B12 195 (180 – 900)

What should I be doing about them please?

Thank you

[Sleepybunny]

Hi,

Are you in UK?

What has your doctor said about these results? Have you been offered B12 treatment by your doctor?

[Catriona1505 in reply to Sleepybunny]

Thank you yes I am based in UK and doctor has not commented on them. No treatment given.

[fbirder in reply to Catriona1505]

What tests have you had?

What were the results?

[Catriona1505 in reply to fbirder]

FOLATE 2.3 (2.5 - 19.5)

VITAMIN B12 195 (180 - 900)

[Polaris in reply to Catriona1505]

Very helpful site with list of symptoms and templates for writing to your GP if necessary:

b12deficiency.info/what-to-...

Latest BMJ research document on PA/B12def. with useful summary if GP won't read the whole document. A good idea to take someone close for support at your next appointment as low B12 and the neurological symptoms you are experiencing should be treated without delay every other day until no further improvement to avoid permanent damage:

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

Best wishes for good treatment Catriona.

[clivealive Forum Support]

Hi Catriona1505 are you saying that you told your doctor that you have all the above symptoms and with low B12 and deficient Folate readings he has not offered you or suggested any treatment? I am absolutely astounded

[Catriona1505 in reply to clivealive]

Thanks the doctor hasn't gotten back to me about the results so no treatment has been suggested. I got the results from the receptionist.

[clivealive Forum Support in reply to Catriona1505]

Ah - sorry, I apologise to your doctor as I (hopefully) misjudged him...

[Gambit62 Administrator]

your results show clear folate deficiency and possible B12 deficiency.

serum B12 isn't definitive as a single indicator of B12 deficiency - people vary a lot when it comes to B12 levels and used as a single measure it will miss 25% of people who are B12 deficient (and pick up 5% of people who aren't).

whilst your symptoms could also be due to folate deficiency treating a folate deficiency in preference to a potential B12 deficiency is problematic and can lead to permanent neurological damage.

Ideally GP should start treating with B12 shots and then 24-48 hours start addressing the folate deficiency. If your GP feels that they want further clarification before treating then MMA test should help clarify.

[JGBH]

Catriona - You must feel rather unwell... My advice is not to wait for GP to contact you, you could wait for ever... but on Monday ask to have an urgent appointment and ask for B12 injections treatment. Do not let your GP fob you off.... You need treatment to begin asap. It is also most important for you to know whether it is only B12 deficiency or PA (pernicious anaemia) as the treatment will be long term injections for PA, for life.

Wishing you luck and hope you will start to feel better once treatment has started.

[LtAngua52 in reply to JGBH]

As I understand it, if you 'only' have b12 deficiency as you put it, due to malabsorption, you still need treatment for life. The symptoms are the same, just as debilitating but you make it sound as if it isn't. Plus, many people may have PA, despite testing negative.

[JGBH in reply to LtAngua52]

B12 deficiency is debilitating of course and needs on-going treatment. Unfortunately in U.K most GPS don't follow the guidelines and post loading doses patients have to wait too long for their maintenance injection which is wrong. As I understand it once there are no more neurological improvement then GPS only prescribe maintenance doses of B12. If one has PA B12 injections are for life every other day.

Indeed the tests for deficiency and absorption problems are flawed and too many patients suffer as a consequence and need to "fight" for treatment! This is so wrong.

[KDSeabourne]

You need to start treatment now! I had majority of these 🙁doctor thought I was crazy 😒 it just gets worse and worse. Before I'd just stare at my hands and notice the colour pigments was changing? Like orange/blue fade colour. Get cold shocks and just have panic attacks and couldn't relax had to Bath about 5times a day just to get warm and relax id notice a panic attack by feeling my neck muscles get stiff and my face 😕I really suggest you get your doctor to rethink b12 injections! Refuse folate Meds until b12 is back up! Doctor failed this for me and made my b12 crash even more 😑

[Gambit62 Administrator]

in what context?

only a problem if you are B12 deficient/not being treated for a co-existing B12 deficiency

[Sleepybunny]

Hi,

I'd suggest reading the whole BSH Cobalamin and Folate Guidelines before next appt.

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin guidelines

stichtingb12tekort.nl/weten...

Flowchart makes it clear that in UK, patients who are symptomatic fro b12 deficiency should have an IFA (Intrinsic factor antibody) test and start initial b12 treatment. This applies whether or not B12 is low or within range.

B12 Deficiency Symptoms

I gave a copy of PAS list to my Gps with all my symptoms ticked.

pernicious-anaemia-society.... see PAS checklist

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

IFA test can help to diagnose PA (Pernicious Anaemia) but is not always reliable and it is still possible to have PA even if IFA result is negative(called Antibody Negative PA).

There are other causes of B12 deficiency besides PA. See lists below.

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

pernicious-anaemia-society....

What does your GP think is causing low folate and borderline B12?

To be honest with all the symptoms you have listed and your results, I'm surprised you have not been offered treatment.

Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage.

My experience is that some doctors are not as well -informed about b12 deficiency as they could be, so I'd suggest reading up as much as you can about it.

Other sources of B12 info

1) Pinned posts on this forum. I found fbirder 's summary of B12 documents useful to read. Link to his summary in third pinned post.

2) PAS (Pernicious Anaemia Society)

I'd suggest talking to them soon. They are sympathetic and can point people to useful info.

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left, may take a few days to get a response.

Martyn Hooper's blog

martynhooper.com/

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

3) BNF (British National Formulary) Chapter 9 Section 1.2

Details of UK b12 treatment. UK GPs will have access to BNF, probably a copy sitting on their desk or bookshelf.

evidence.nhs.uk/formulary/b...

4) B12 Deficiency Info

Person who runs website can be contacted by e-mail.

b12deficiency.info/

Lots of b12 info and an interesting blog about B12 issues.

5) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" By Martyn Hooper.

Martyn Hooper is the chair of PAS. He has written two other books about PA and B12 deficiency.

6) Book "Could it Be b12" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

Unhappy with treatment?

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment.

hdapatientcaretrust.com/

Blood test results

Have you had a recent full blood count? A FBC might give clues as to whether iron deficiency , folate deficiency or b12 deficiency are possibilities.

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

Do you get copies of all your blood test results?

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

What to do next?

b12deficiency.info/what-to-...

Folate Deficiency

Your folate level is below range. I have read that if someone is folate deficient, it is important to make sure any co-existing B12 deficiency is also treated. See Management section in next link.

patient.info/doctor/folate-...

I am not a medic just a person who has struggled to get a diagnosis.

[Gambit62 Administrator]

the risk is extremely small. it doesn't apply once serum B12 levels have been raised by injection. Standards recommend leaving supplementing folic acid until 24 hours after treatment with B12 starts.