Long Covid

[MrsBRE]

Starting a course of B12 injections tomorrow after a concerning blood test and 4 months of Long Covid fatigue, and a number of other issues. Interested in the links mentioned between these conditions.

[fbirder]

Interesting!

Did you have any symptoms of a B12 deficiency before getting covid-19?

Hope you get well soon.

[MrsBRE in reply to fbirder]

I experienced tiredness but none of the other symptoms. I’m also having to take Iron and Folic Acid.

[fbirder in reply to MrsBRE]

Hmmm. Pernicious Anaemia can also cause problems absorbing iron, folate and Vitamin D.

Do you know what your values were in that blood test?

I'm wondering if you may have had PA before the covid, or if the covid has caused the deficiencies.

[MrsBRE in reply to fbirder]

B12 was 142ng/lSerum folate 1.6 ug/l

PCV and haemoglobin low.

I’ve wondered this too, high hopes for these injections.

[Hidden in reply to MrsBRE]

Wishing you a speedy recovery Mrs BRE.x

[Jackiemary in reply to MrsBRE]

Please take folic acid before and together with the B12 injections. It may help you to join the Vitamin B12 Wake up group on Facebook. It's a really helpful page and people x

[Wagonwheel in reply to MrsBRE]

I really would not join the facebook page mentioned in another comment its full of misinformation. You found your way here, which is where you'll find informed and accurate advice and information

[Nackapan]

I hope the b12 picks you up a bit. Then tackle low folate and other deficiencies. You say you are having t take iron too.It takes time .

I wish you well

[Sleepybunny]

Hi,

"I experienced tiredness but none of the other symptoms"

Have at look at these lists; the symptoms of B12 deficiency are very varied.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

If you think PA is a possibility, I suggest joining and talking to PAS who can offer support and pass on useful info.

Have you been tested for PA?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

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.

There are GPs in UK who don't realise that it is possible to have Antibody Negative PA.

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

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

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

There are useful diagnostic flowcharts in above document.

BNF Hydroxycobalamin

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

If you have any neurological symptoms, read the section on treatment for those with neurological involvement.

NICE CKS

cks.nice.org.uk/anaemia-b12...

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

Treating a folate deficiency without treating a co-existing b12 deficiency may lead to neurological problems.

Useful B12 book

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in this book is out of date. See BNF Hydroxycobalamin link above.

Have you been tested for coeliac disease?

Guidelines in link below suggest that people with unexplained B12, folate or iron deficiency should be tested.

NICE guidelines Coeliac Disease

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

If unhappy with treatment for B12 deficiency, link below may be useful.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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

Vital to get adequate treatment for B12 deficiency. Untreated or under treated B12 deficiency can lead to permanent neurological damage including problems with spinal cord.

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....

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

A warning....

B12 deficiency is not always well understood by GPs and specialists so I suggest doing some homework on b12 deficiency in case doctors have not done theirs.

[MrsBRE in reply to Sleepybunny]

Thanks for this, no I haven’t been tested. How is it diagnosed?

[Sleepybunny in reply to MrsBRE]

Have a look at the links I posted about PA tests. More info about PA on PAS website.

I have added more to my original post.

I've written some very detailed replies with lots of B12 info eg causes, symptoms, more B12 books, more B12 articles that you may find of interest. See links below.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Sleepybunny]

There is some useful info on Long Covid on ME Association website.

Just put Long Covid in search box on website.

meassociation.org.uk/

"Starting a course of B12 injections tomorrow"

How many loading injections are they going to give you?

After the loading injections have finished , how often will you get injections?

BNF outlines two patterns of treatment for

1)B12 deficiency without neuro symptoms

2)B12 deficiency WITH neuro symptoms

See BNF Hydroxycobalamin link in other post for more info.

[Cherylclaire Forum Support]

Since you have low B12, low folate and ferritin, I am hoping your vitamin D level was also checked. I know you could do without another problem - but I was found to also have osteoporosis of the spine five years ago- and, as fbirder has already pointed out, B12 deficiency can affect vitamin D too.

Glad your B12 deficiency has been picked up and addressed.

I am recovering from covid which started on January 1st - and believe that five years of working to improve and stabilise all of these levels helped me. Blood test results in October last year were the best yet. Even so, in covid recovery, I increased the frequency of my B12 injections, partly because the symptoms seemed similar to those of B12 deficiency, but also because when at my worst with covid, it was impossible for me to self inject.

Really worth making a comparison with B12 deficiency symptoms -links supplied by Sleepybunny . A surprising array of long-ignored ailments can start improving and/or disappearing once low B12 is raised.

Good luck, MrsBRE .