Do I need to Self Inject?: I was... - Pernicious Anaemi...

Pernicious Anaemia Society

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Do I need to Self Inject?

Kazzie19
Kazzie19

I was recently diagnosed with PA and had 2 injections per week for two weeks from my GP. I have noticed a small improvement in my symptoms but still have significant symptoms (interrupted sleep, extreme fatigue, brain fog and general aching pain). My doctor says I am not due an injection for another two months. Should I consider self injection?

12 Replies
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clivealive
clivealiveForum Support

Are you in the U.K. Kazzie19? because if you are according to the N.I.C.E guidelines loading doses should "continue until there is no further improvement" in neurological symptoms which include those you mentioned above so one option would be to list them and go back to your doctor asking for the injections to continue.

google.co.uk/url?sa=t&rct=j...

Click on the link, then on "Scenario: Management" and scroll down.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

Kazzie19
Kazzie19 in reply to clivealive

Thanks very much Clive alive I am in the UK - other replies indicate that I am not getting treatment within UK guidelines so I will start by going back to my GP - thanks

Will you get another blood test prior to your next 2 monthly injection! That will show if the booster injections has raised your B12 levels. If you self inject now and your blood test shows increased B12 levels then your surgery may suggest no further injections required which is a dilemma,

I did not get another blood test after my booster injections, but still felt "rough" I now inject in between my top up injections at my surgery. After two years i feel good

I trust this helps

Kazzie19
Kazzie19 in reply to keevee

It does help - thank you. I am not expecting another blood test - but I am not sure yet. I think I will try to take the advice offered here and get back to my GP first. Thanks

Hi,

Have you considered joining and talking to PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK. but has members from around the world.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone so messages can be left. May take a few days to get a response.

PAS support groups in UK

pernicious-anaemia-society....

If you're in UK, I'd suggest reading following documents.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

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 is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

Is your GP aware of the consequences of under treating B12 deficiency?

PAS news item on Neuro Consequences of PA

pernicious-anaemia-society....

PAS article on SACD, sub acute combined degeneration of the spinal cord, available to PAS members.

pernicious-anaemia-society.... See page 2.

UK B12 blogs

May be relevant stories on these blogs especially if you're in UK

martynhooper.com/ Martyn Hooper is the chair of PAS.

b12deficiency.info/blog/

USA B12 website

b12awareness.org/

Dutch B12 website (has some english language articles)

stichtingb12tekort.nl/

More B12 info in pinned posts on forum.

I am not medically trained.

Kazzie19
Kazzie19 in reply to Sleepybunny

Wow! Thanks for all the information! Loads of reading to do before I make any decisions!!

Sadly, although it would be good to get the treatment you need from your Dr, you may well need to.

Lots of us do because we can't live without it and serious damage and ultimately death can result from the deficiency. Doing the injections is much easier than the thought of it and getting your life back is priceless, as is not having to fight health practitioners all the time.

For more information, including sources of supplies, you could look up my profile by double clicking on my name and scroll down to see my post "My Experiences".

If you inject regularly you may benefit from taking a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron to support the additional B12.

Feel free to ask more if you need to.

Good luck!

Thanks! This is so helpful - I have had some very generous responses and have some work to do - it seems likely that I will end up self injecting but I need to try again with my GP first. Since my question I have explored this site further and am very grateful for the wealth of information available.

Hi again,

NICE CKS link in my post above recommends that in UK, GPs seek advice from a haematologist for people with B12 deficiency with neuro symptoms present.

Has your GP contacted a haematologist or referred you to a haematologist if you have neuro symptoms eg tinnitus, tingling, pins and needles, memory problems, balance issues, tremors plus other neuro symptoms? See Symptoms Lists links for other possible neuro symptoms.

If you have neuro symptoms, have you been referred to a neurologist?

Although PA can lead to neuro problems, it's important to exclude other possible conditions.

In UK, it's your right to ask for referrals to a specialist, although GP does not have to agree. I prefer to put referral requests in a brief, polite letter to GPalong with reasons why I think referral necessary eg symptoms, relevant test results, extracts from documents etc

"had 2 injections per week for two weeks from my GP"

"doctor says I am not due an injection for another two months"

The pattern of treatment you have described is not typical of UK B12 treatment so either you're in another country which has a different treatment pattern to UK or if you're in UK, GP does not appear to be following recommended UK b12 treatment.

BNF British National Formulary Chapter 9 Section 1.2 and BSH Cobalamin and Folate Guidelines ( a quarter through guidelines) have details of UK recommended treatment pattern. All UK GPS will have access to BNF, probably a copy sitting on their desk or bookshelf. Possible that some GPs may not have read BSH Cobalamin guidelines, I gave my GPs a copy.

In my opinion, there is no excuse for not knowing recommended UK B12 treatment when it's in BNF. It's possible to get own copy of BNF or local library may have a copy.

In UK, for B12 deficiency without neuro symptoms, it is 6 B12 loading jabs over 2 weeks followed by a jab every 3 months.

For B12 deficiency where neuro symptoms are present,it is a B12 loading jab every other day for as long as symptoms continue to get better (this could mean loading jabs for weeks even months) then it's a jab every 2 months.

My personal opinion (I'm not medically trained) is that in UK, sometimes B12 loading doses are not given for a long enough period. It can take weeks even months for improvement to show especially if symptoms are severe.

"it seems likely that I will end up self injecting but I need to try again with my GP first"

Before you resort to self treatment, I think it's worth talking to PAS. You have a confirmed diagnosis of PA and PAS may be able to intervene by writing a letter. You would need to be a PAS member.

May be worth getting copies of test results/medical records that show PA diagnosis. Some forum members have been denied treatment or had injections stopped because the PA diagnosis had not been recorded in notes or lost from notes.

Access to Medical Records (England)

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

nhs.uk/chq/pages/1309.aspx?...

Kazzie19
Kazzie19 in reply to Sleepybunny

Thanks sleepybunny and everyone else who has responded - I have not been referred to any specialist - I am very grateful for the information. It's natural to assume that your GP will do everything they are supposed to. Although it seems like mine may have not fully understood the problem on this occasion. I will try again to get better treatment now that I am better informed. I am a little bit overwhelmed by the support and information you have all offered and will work my way through it and produce a summary of what seems most relevant to my symptoms. Then back to my GP as a first step. ( Maybe a letter also). Thanks again

No.

Most people do not need B6 supplements.

Taking B6 supplements can cause peripheral neuropathy.

Foggyme
FoggymeAdministrator

All....please note....some recent replies to this post are inappropriate, misleading or contain dangerous advice. These replies have been deleted therefore some appropriate responses to those replies now appear out of context.

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