First B12 and feeling worse - Pernicious Anaemi...

Pernicious Anaemia Society

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First B12 and feeling worse

RexandBoone profile image
17 Replies

I've had my first B12 injection and feel more tired, restless sleeping and definitely irritable. Just to add to the mix I have Hashis. But this doesn't feel like that.

I've done a lot of reading on here and it seems there's a link with high ferritin + low folic acid + B12 injection = huge fatigue. I've had my high ferritin investigated and it seems 'benign' but not had folates done. And after the MMA test with Medichecks plus cost of venous blood, I'd rather save my pennies for now.

Does this seem a reasonable conclusion? I figure folic acid supplement is cheap and if I feel a result, great! I must add that the GP is not involved as I was told they don't investigate low B12 and they don't recognise the MMA test (Lothian)

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wedgewood profile image
wedgewood

Unbelievable that your surgery does not investigate low B12 . Pernicious Anaemia is the most common reason for low B12 ., and P.A. is PERNICIOUS (i.e.DEADLY ) P,A. patients often feel worse when starting treatment. I assume as you are just starting , that you are receiving 6 injections over 2 weeks. , called loading doses?

.So you need to be patient.Best wishes for successful treatment .

RexandBoone profile image
RexandBoone in reply towedgewood

Is it just not glamorous enough for them? Cheap (relatively) to fix! My B12 was right down at the low end and the GP said they can't investigate, even if it was below the low end. When I presented my private test result for MMA, was literally told they don't recognise it. Crazy. But I was offered a prescription for B12 tablets. Hey ho.

I'm getting 3 injections over 2 weeks (at a pharmacy) of 500ug Methylcobal. I'll stick with it of course, but I was indeed expecting to bounce off the walls 😀

wedgewood profile image
wedgewood in reply toRexandBoone

Have you considered self-injecting? It’s what most people on this forum do . It is so cheap and convenient . ( Roughly £1.60 ,— ampoule , withdrawal needle , injecting needle , syringe , swabs included ) You can inject Intramuscularly or subcutaneously .

RexandBoone profile image
RexandBoone in reply towedgewood

Yes, I'll be doing that. I thought I'd get the loading dose done, then order online. Was worried it'd take too long to arrive

wedgewood profile image
wedgewood in reply toRexandBoone

The German online pharmacy that I use (versandapo.de ) uses DHL couriers and they take about 4 working days .

RexandBoone profile image
RexandBoone in reply towedgewood

Thank you 😊

Nackapan profile image
Nackapan in reply toRexandBoone

See another GP Did they do a serum b12 ax folate done at thd same time.

If tablets don't work tel them

Go back.

They do recognise Mma tests just don't do them if treating b12.

Many go's won't accept private test results ax it won't cover their backs if they treat off thd vacs oc them !

They do abd ca refer to specialists.

Neurologists

Haematologist

Gastro ect depending on your symptoms

RexandBoone profile image
RexandBoone in reply toNackapan

If they won't accept a private test, ok I get it, but just tell me or better still do your job that I've done for you! One concession the GP has made is to say she would facilitate me getting venous blood samples. I guess that's a win :/

Sleepybunny profile image
Sleepybunny

Hi,

Forum members often report symptoms get worse before they start getting better when treatment starts.

See side effects section in BNF link below.

BNF Hydroxocobalamin

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

"I've had my high ferritin investigated and it seems 'benign'"

Have you had other iron tests besides ferritin and have you had liver and kidney function tests?

Iron Studies

labtestsonline.org.uk/tests...

There is a section on what the test result means.

Some links below may have details that could be upsetting.

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

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link has letter templates covering a variety of situations linked to B12 deficiency.

NHS Complaints Scotland

nhsinform.scot/care-support...

citizensadvice.org.uk/scotl...

Local MP or MSP may be worth talking to if struggling to get treatment.

members.parliament.uk/regio...

parliament.scot/msps/curren...

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....

Testing for PA

pernicious-anaemia-society....

Have also read that a pepsinogen test may be useful.

PAS website has useful articles and a page for health professionals that your GP may find interesting.

pernicious-anaemia-society....

pernicious-anaemia-society....

Some other UK B12 documents/articles

NHS article about B12 deficiency (simply written, lacks detail in my opinion)

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

BSH Cobalamin and Folate Guidelines

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

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

stichtingb12tekort.nl/engli...

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 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).

Local B12 Deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down the local guidelines and comparing the info with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

"as I was told they don't investigate low B12"

That seems very strange to me and I suspect is a misunderstanding.

These may be the B12 deficiency guidelines covering your area but I suggest you check that.

apps.nhslothian.scot/refhel...

Best bet is probably to submit a FOI request to your CCG asking for a copy of local B12 deficiency guidelines.

You can also submit a FOI request to your GP surgery asking for a copy of the local B12 deficiency guidelines that the surgery uses. This might irritate them but could be useful to see what they say in their response.

Two B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info. See BNF hydroxocobalamin link for up to date info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Some health professionals have misconceptions (wrong ideas) about B12 deficiency.

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 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 deficienc

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

BNF treatment guidance has changed since this 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...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Sleepybunny profile image
Sleepybunny

Some links specific to Scotland that may be of interest

NHS Scotland link about B12 deficiency and Folate deficiency

nhsinform.scot/illnesses-an...

Accessing Health Records (Scotland)

nhsinform.scot/care-support...

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

A Scottish National Formulary (SNF) is being developed.

This will give recommendations on what drugs/medicines can be prescribed in Scotland and may affect what GPs can prescribe for B12 deficiency.

I believe at moment that the BNF (British National Formulary) is used in Scotland.

BNF

bnf.nice.org.uk/

Petition to Scottish Parliament about B12 deficiency (covers period from 2011 - 2018)

parliament.scot/GettingInvo...

Click on underlined headings in link above for more info.

Support Groups in Scotland

There was a PAS support group in South Scotland...think it needs a group co-ordinator at moment.

pernicious-anaemia-society....

There was also a Thyroid Support group in Kilmarnock which welcomed people with b12 deficiency

healthunlocked.com/thyroidu...

B12 Society (UK charity based in Scotland)

theb12society.co.uk/

You could always post your story on CareOpinion website.

People can post anonymous reviews and sometimes GP surgeries/hospitals etc respond.

Care Opinion website

careopinion.org.uk/

RexandBoone profile image
RexandBoone in reply toSleepybunny

Wow, what can I say Sleepybunny ? Thank-you do much for all the information which I'll take a look at. Really appreciate you giving me do much local avenues to pursue

Sleepybunny profile image
Sleepybunny in reply toRexandBoone

Here's another link that might be worth a look.

Healthcare Improvement Scotland

hisengage.scot/

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

May also be worth looking at B12 deficiency guidelines from other Health Boards in Scotland.

Some mention that their advice on B12 deficiency testing/diagnosis/treatment is nationally agreed so I suspect Health Boards in Scotland are moving towards standardisation.

NHS Highland

tam.nhsh.scot/for-healthcar...

NHS Greater Glasgow and Clyde

ggcmedicines.org.uk/blog/me...

It made a big improvement to me taking Lmethylfolate as I do not clearly convert regular folate which is not uncommon…

MoKayD profile image
MoKayD

Your sleeplessness and restlessness might be the result of taking the methyl type of B12. It did not agree with me. The two times I took it, it gave me insomnia, horrible anxiety, etc. This doesn't happen with my cobalamin shots.

RexandBoone profile image
RexandBoone in reply toMoKayD

Thank you MoKayD , I'd noticed that Methycobal isn't mentioned much. I'm on the Thyroid group too and have seen that different brands can affect you.

Sleepybunny profile image
Sleepybunny

Found this GMC link about Complaints in Scotland

gmc-uk.org/-/media/document...

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