Vit B12 readings OK but have symptoms of PA

[PolyannaYorkshire]

Can you have pA if you vit B 12 is OK? (424)

I have all the symptoms of PA/Vit B12 deficiency & my grandmother died of PA.

Thyroid problems run in our family I have been on levothyroxine for years.

[Nackapan]

If everything elsd ruled out perfectly possible There are other tests.

Active b12( private)

MMA

Intrinsic factor tests .

Functional b12 deficiency

Your result is well in range if pg/ml

Symptoms fo overlap

Are you s member of the thyroid group ?

Have you been on any supplements

Could raise levels but you u able to use it

Hopd you get some more investigations

[PolyannaYorkshire in reply to Nackapan]

Thank you Nackapan. Yes I belong to thyroid group. Think Ill go Intrinsic factor route next... Don't know whether to try B12 injections (either Germany or Superdrug). to see if I m any better. 🤗Jusy

[Sleepybunny]

Hi,

Short answer - Yes

Long answer - see links I left on your thread from a couple of weeks ago.

Have you been tested for PA and Coeliac disease?

Testing for PA

pernicious-anaemia-society....

Does your GP know your gran had PA?

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

Have you considered joining and talking to PAS(Pernicious Anaemia Society)?

Membership of PAS is separate to membership of this forum.

You do not have to have a confirmed diagnosis of PA to join PAS.

PAS membership.

pernicious-anaemia-society....

Flowchart below may be worth passing onto your GP if they are refusing to treat you because your serum (total) B12 is within normal range.

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

I suggest you get hold of the local guidelines on treating B12 deficiency for your CCG (Clinical Commissioning Group)/Health Board. Search forum posts for "local guidelines"or online for "name of CCG/Health Board B12 deficiency guidelines".

Summary below from BSH Cobalamin and Folate guidelines includes this statement which you may want to include in any letter you write to GP.

"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

You could point out any deficiency symptoms you have in any letter or conversation with GP.

Maybe use the PAS symptoms list below with any additional symptoms added to bottom of sheet.

pernicious-anaemia-society....

Point 5 in link below is about writing a letter to GP if symptomatic for B12 deficiency with an in range serum (total) B12 result.

b12deficiency.info/b12-writ...

I am not medically trained.

[PolyannaYorkshire in reply to Sleepybunny]

Yes I mentioned my Gran in the eConsult to GP... I will get tests done myself. Thank you for your very helpful info. (& support).🤗

[Sleepybunny in reply to PolyannaYorkshire]

"I will get tests done myself"

Bear in mind that UK GPs may not accept the results of private blood tests but if the private blood tests show something significant then it may be enough to nudge your NHS GP to order the same tests or refer you to a specialist who can order them.

The results of some blood tests may be affected if you are already supplementing with B12.

Apologies for repeating info I left on your other thread (I thought it might help others reading this).

Blood tests linked to B12 deficiency

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Gastrin test

labtestsonline.org.uk/tests...

I have also read an article that suggested a pepsinogen test could help to diagnose PA.

"Yes I mentioned my Gran in the eConsult to GP"

If you have time I would still suggest putting your queries about treatment and info about family history in a letter to GP and maybe also copied to practice manager.

In UK, letters to GP are supposed to be filed with medical notes. It's a good idea to keep a record of any communication between you and GP surgery in case there is a need for a formal complaint in future. This could be copies of letters sent/received/screenshots of online communication if appropriate to do so etc.

There are cases of people suffering severe permanent neuro damage from B12 deficiency, with serum B12 results within normal range.

Make sure your GP is aware of any neuro symptoms you have especially any affecting your spinal area.

See Point 5 in letter writing link in my other reply.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

You could draw your GPs attention to the increased risk of SACD in people with denied, delayed, inadequate B12 treatment.

Functional B12 deficiency

May also be worth drawing GPs attention to the possibility of Functional B12 Deficiency.

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the patient develops symptoms of deficiency.

Functional B12 deficiency is mentioned in Point 5 of the letter writing link.

This NHS link mentions functional B12 deficiency

nhs.uk/conditions/vitamin-b...

NICE CKS link below includes the Note

"clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."

cks.nice.org.uk/topics/anae...

Maybe useful to quote above in any letter to GP.

I had one below range serum B12 result and was only allowed one set of 5 or 6 loading injections despite having many neuro symptoms.

The rest of my serum B12 results were well within normal range eg between 300 - 500 ng/L and NHS refused to treat me. At this time I had over 40 typical symptoms, perhaps as many as 60 symptoms with many neurological problems.

I suffered for over 15 years and count myself as extremely lucky to have avoided dementia and SACD...I had dementia symptoms and symptoms affecting my spine.

Don't let them fob you off with inadequate treatment.

In the end, I was forced to treat myself as a last resort when all chance of getting NHS treatment ended. There are forum threads about people who treat themselves.

Some GPs find it hard to cope with assertive patients.

You may want to ask to record appointments that may be challenging. Doctors are unlikely to be keen on a patient recording but if you suffer from cognitive problems such as brainfog and memory issues, fatigue, pain then you would have a good case to be allowed to on disability grounds.

Link about recording appointments

bma.org.uk/advice-and-suppo...

It's my impression that GPs are likely to be more helpful if

1) there is a witness present

2) the appointment is being recorded

Symptoms Diary

Some UK forum members keep a daily symptoms diary that tracks changes in symptoms over time and if and when any treatment is received. May also be useful to note any blood test results in it. Could be useful evidence of any improvement or deterioration in symptoms to show GP/specialist.

Have you been referred to any specialists?

I would expect you to be referred to a neurologist if you have any neuro symptoms.

Referrals are expensive for GP surgery so you may need to argue your case persuasively.

I used to put referral requests in a brief, polite letter to GP and tried to back up the request with evidence eg symptoms list/extracts from UK documents eg BNF/BSH Cobalamin and Folate guidelines, NICE CKS B12 deficiency etc.

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

Link below outlines when patients with B12 deficiency should be referred to a haematologist or gastro enterologist

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).

[PolyannaYorkshire in reply to Sleepybunny]

Thanks!!🤗

[WiscGuy in reply to Sleepybunny]

Sleepybunny, another excellent post.

[Sleepybunny]

Hi again,

I think I posted these on your other thread but thought useful for others reading this thread.

Be well prepared for any appointments as it's been my experience and that of far too many on this forum that B12 deficiency is not always well understood by the medical profession.

If you know what the common misconceptions (wrong ideas) about B12 deficiency are, hopefully you can argue successfully against a health professional who expresses some.

B12 article from Mayo Clinic in US (aimed at researchers and health professionals)

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

UK B12 treatment guidance has changed since above blog post was written.

Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

[PolyannaYorkshire in reply to Sleepybunny]

Thank you so much!🤗

[Sleepybunny]

Hi,

Curious about your screen name.

I always suggest that people take care not to give out too much personal info, in order to protect their privacy/identity.

In case you are somewhere in Yorkshire.....

Some of these documents may be out of date.

Hull and East Riding Prescribing Committee

hey.nhs.uk/wp/wp-content/up...

Review date April 2021

York Hospital NHS trust

Were reviewed Sept 2021 so fairly recent

yorkhospitals.nhs.uk/seecms...

Sheffield CCG

Guidelines seem to be on a staff intranet system and I couldn't access them.

sheffieldccgportal.co.uk/cl...

Leeds CCG

leedsccg.nhs.uk/content/upl...

Bradford NHS Formulary

bradfordhospitalsformulary....

If the info you need is not here, probably best bet is to submit a FOI (Freedom of Information) request to your CCG/Health Board asking for a link to or copy of local B12 deficiency guidelines.

[PolyannaYorkshire in reply to Sleepybunny]

Thank you...very useful🤗

[grandmacutler]

Hi I'm in Canada. Your story is so similar to mine. Wishing both of us good luck in dealing with this.