Blood tests to request as having brain fog …

[Delilahmy]

My daughter is asking for her b12 to be checked and I said I’d ask for a reminder of other tests …. I said iron ferritin and vit d ….. any suggestions please many thanks

[Nackapan]

Folate is usually tested at the same time as B12 but wise to check.I imagine a full blood count will be done depending on symptoms.

Good idea to get a copy of the blood results.

[Delilahmy in reply to Nackapan]

Thankyou Nackapan … doctor agreed to do my daughters b12 it was last done in 2018 and he said it was 414 … but she has lots of fatigue and lots of b12 type symptoms (lab range 200-900 ) Thankyou

[Scott-rock]

calcium and parathyroid hormone. If high they cause brain fog and similar symptoms to b12 deficiency. B12 deficiency can also raise them .

[Delilahmy in reply to Scott-rock]

Thankyou Scott-rock

[Sleepybunny]

Hopefully GP would at least test serum B12, folate, ferritin and a full blood count (FBC).

If she suspects she also has iron deficiency, worth asking for a full panel of iron tests, see next link.

Iron Studies

labtestsonline.org.uk/tests...

I'd also ask for Vitamin D test as quite common on here for people to have Vit D deficiency.

Has she had any thyroid tests?

Again quite common on here for people to also have thyroid issues.

If she's symptomatic for B12 deficiency and her diet is B12 rich then maybe she could ask for tests for PA (Pernicious Anaemia) and Coeliac disease.

PA and Coeliac disease are both auto immune conditions that can lead to B12 deficiency.

Testing for PA

pernicious-anaemia-society....

NICE guidelines Coeliac disease suggests anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.

nice.org.uk/guidance/ng20

I suggest she takes a list of symptoms to hand over. I used PAS list below and added extra symptoms at the bottom. Make sure she includes all neuro symptoms and definitely any spinal symptoms and that she keeps a copy for herself.

pernicious-anaemia-society....

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

I'm not medically trained.

[Delilahmy in reply to Sleepybunny]

Thankyou Sleepingbunny … your advice and links are great … I’m hoping to print off links and make a list of tests she needs by going through the info …. Just have to wait for my fatigue and brain cells to catch up with my will to get the job done… a bit hit and miss at the moment but am determined she won’t miss anything if I can help .:.. with all the wonderful help here

X

[Sleepybunny in reply to Delilahmy]

It can be hard to persuade GPs to consider treating for B12 deficiency if a person has normal range serum B12.

May be worth looking into Functional B12 deficiency if her serum b12 is normal range but she has deficiency symptoms.

Functional B12 deficiency 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 person develops deficiency symptoms.

MMA, Homocysteine and Active B12 (holotranscobalamin) tests can help to diagnose Functional B12 deficiency.

If she suspects she might have PA then worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

PAS website has lots of useful info/leaflets etc that she could pass on to her GPs.

A bit more about thyroid issues

In UK, GPs often only test TSH which won't give a full picture of thyroid function.

There are other thyroid tests that a GP or specialist can order.

Thyroid tests

thyroiduk.org/thyroid-funct...

I suggest she puts any thyroid results on Thyroid UK forum on HU. It's a very active, supportive forum.

GPs and specialists can have misconceptions (wrong ideas) about B12 deficiency.

I suggest you both read about some of the common misconceptions that health professionals have in case she gets a doctor who lacks understanding of B12 deficiency. Try to find useful quotes etc to help you argue against the common wrong ideas.

B12 article from Mayo Clinic in US

Aimed at researchers and health professionals.

One of the best B12 articles I've found.

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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...

Diagnosis and Treatment Pitfalls

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

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

Local B12 deficiency guidelines

I usually urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board. Her GP is likely to refer to local B12 deficiency guidelines for diagnosis and treatment.

CCGs (Clinical Commissioning Groups) were replaced by ICBs in England in 2022.

List ICBs in England

nhs.uk/nhs-services/find-yo...

If she can't find them online or on this forum then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.

Read this blog post if you want to know why I suggest tracking down the local B12 deficiency guidelines.

b12deficiency.info/gloucest...

Compare the local guidelines with documents below.

UK B12 documents

NHS article about B12 deficiency (simply written)

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

BSH Cobalamin and Folate Guidelines (detailed/aimed at health professionals)

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

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and Folate deficiency

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 Nov 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 (lots of pages).

There may be some other useful info in threads below where I left very detailed replies with lots of B12 info.

Some info will be UK specific.

Some links may have details that could be upsetting.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

This next thread about Patient Safety has useful links for people who've had or are having difficult health experiences in UK.

healthunlocked.com/pasoc/po...

[Delilahmy in reply to Sleepybunny]

Thankyou so much Sleepingbunny … I’m getting all info together and will list tests that are suggested …. She’s really struggling with neurological symptoms and has a string of disorders that are so disabling …. I’m trying to look for a needle in a haystack with her …. But I’m on b12 treatment (SI) under active thyroid for 35 years …. So she has potential to be similar …. Thankyou for your time here … this site and all in it are soooo helpful

[Sleepybunny in reply to Delilahmy]

PAS (Pernicious Anaemia Society) can be a source of support.

PAS support groups in UK

pernicious-anaemia-society....

Not sure how active these groups are.

B12 Info.com (formerly B12 Deficiency Info) lists sources of support

b12deficiency.info/

B12d.org had online support meetings during pandemic, not sure if these still happen. Contact B12d.org for details.

b12d.org/

Good luck to you both and I hope she finds answers and gets the treatment she needs.

Has she seen a neurologist?

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist

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

If she's symptomatic for B12 deficiency and cannot get treatment then may be worth discussing in a letter and conversation with GP that untreated or under treated B12 deficiency increases the risk of permanent neurological damage. Severe B12 deficiency (which can occur with normal range serum B12) can affect the spinal cord.

It's rarer but this can also happen with folate deficiency.

Link below has letter templates to help people write to their GPs.

Point 1 is about under treatment of b12 deficiency with neuro symptoms present.

Point 5 is about being symptomatic for b12 deficiency with normal range serum b12.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Mentioning SACD, sub acute combined degeneration of the spinal cord may make the doctors take more notice.

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

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog about PA and B12 deficiency, mentions SACD

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

Martyn Hooper is the chair of PAS.

GP/patient relationship

Some GPs (and some specialists) cannot cope with assertive patients so be prepared for doctor/patient relationship to come under strain.

If this happens, see thread about Patient Safety.

[Delilahmy in reply to Sleepybunny]

Thankyou sooo much