Pernicious Anaemia Society

B12 injections stopped... HELP!

Okay Hi i have been having b12 injections for 9 years. After being diagnosed with PA at 17. Was told i was on them for life and after around 3/4 years then went to 8 weekly after neuro problems. In 2011 a doctor took me off the injection completely and my whole world crashed. I went through a depressive episode, hormones went all over the place - they thought i was going through the change and had 6 months off work. I went to the doctor with my complaints (a new dr) in 2012 and she was disghusted someone had taken it away due to my levels being too high. So i was put back on every 8 weeks. I recently moved house and doctors and new dr was not happy on the 8 week so i explained i have a consultant letter and blah blah to then find they have only half of my medical files. He requested a blood test to which my levels are 2000. My folate was just under he said and He has rang today and said no injection. More bloods for (IF testing) and would like me to see a haemotogist. All this is happening 3 days before i am due. Im exhausted and need some help or advice here. I also have problems with coeliac - i don't know if i was diagnosed or not... its on my electronic notes but there is no paper notes as of yet to confirm as that was when i was age 2 ish. Im 26 now...

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Hi Frankiebee26,

Are you in UK?

If yes, I'd suggest you consider joining PAS (Pernicious Anaemia Society) soon. They can sometimes intervene by writing letters.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone so messages can be left.

Sadly there are others on this forum going though the same thing.

This is a link to another thread of someone else who has had injections stopped. May be useful info/links on thread.

healthunlocked.com/pasoc/po...

Links about how PAS has helped people who have had injections stopped.

martynhooper.com/2017/06/22...

martynhooper.com/2016/09/23...

martynhooper.com/2016/04/24...

PAS members can print out a leaflet called "Treatment is for life" to give to GP.

pernicious-anaemia-society....

Have you got a full set of your paper medical records?

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

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

In UK , some Gp surgeries have online access to a summary record but it is just a summary and may not have all info wanted.

I think it's sensible for people at risk of having injections stopped to try to get proof of their PA diagnosis.

If you're in UK, i'd suggest reading whole "BSH Cobalamin and Folate Guidelines"

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

I am not medically trained just someone who has struggled to get a diagnosis.

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Thank you for taking the time to reply. I've been chasing my old doctors and my paper notes are still there... 3 months after moving. :( i have asked for my old test result for IF and it came back unknown in 2008 so why would they treat me for 9 years on an unknown diagnosis. I don't know what to do here because my body and mind are reliant on this injection there now trying to tell me i may of never needed. I just want to curl and cry 😭

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You will probably need to formally write to your GP, copied to the practice administrator and the local PALS to summarise why the treatment you are being given is incorrect.

The IFA test is a waste of money in this case - if you have coeliacs then that is just as likely to be the cause of problems absorbing B12 as IFA and if the test comes back negative it is a long way from ruling out PA as it produces false negatives 40-60% of the time.

Normal range means nothing in respect of someone who has and is being treated with B12 shots. High serum B12 can kick off a reaction that leads to B12 being retained in blood and not able to pass into cells unless there is a lot of B12 in your blood so normal range doesn't apply after B12 treatment has started. BCSH guidelines were changed in 2014 to say that testing after treatment had started was not necessary unless there was a suspicion of non-compliance with treatment and the test results are only significant if they come back low.

B12 serum only measures what is happening in your blood, not what is happening in your cells which is where B12 counts - tests that can help clarify that are MMA and homocysteine but actually, as you know, further testing isn't what is needed - proper treatment is what you need.

Presumably you had/have neurological symptoms, hence the treatment with 8 weekly shots.

It would be worth drawing your GPs attention to the guidelines and the fact that they are not treating you correctly but do this in writing - copied as above. You could also suggest that they take a look at the PAS microsite for medics

pernicious-anaemia-society....

Another thing you could try is contacting your previous GP to see if they can help.

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Reply

Hi,

There are other conditions besides PA that can lead to B12 deficiency.

Risk factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Unhappy with treatment (UK info)?

Link about writing letters to GP about B12 deficiency.

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart above outlines when PA and Antibody Negative PA can be diagnosed in UK.

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin 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.

"Could it Be b12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Some other B12 info

1) Pinned posts on forum. I found fbirder 's summary of mainly UK b12 documents helpful to read. Link to summary in third pinned post.

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat people who are symptomatic for b12 deficiency to prevent neuro damage.

Lists of B12 deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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Forgot to mention my Mum has PA

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I'm so sorry you're having such a struggle to 'prove' to your gp that you need B12 injections. This happened to my son when a nurse overruled the gp and said he didn't need his 8 weekly injections after having them for several years & being told he needed them for life. It was never reinstated. We changed doctors and further blood tests showed him at the very bottom of the reference range but still within it so no more jabs!

Thanks to the help from this wonderful site he is now self injecting and hasn't looked back. It's an option worth considering if you can't persuade your gp to listen. The B12 and necessary paraphernalia are easily obtained and not expensive.

I hope you get it sorted soon x

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