B12 and covid

[Blueeyes57]

My practice nurse refuses to see me for my 8 weekly b12 saying not worth risk of attending surgery and I can wait for few months as liver stores it! I know this is incorrect but couldn't be bothered arguing! Should I speak to gp or just self administer as already doing this alternate to my gp injections as sonorous after 4 weeks? If I do self administer which the nurse said was impossible as wasnt trained and dangerous- (Been doing with no complications for two years but they aren't aware!) If I admire this to gp are they likely to refuse me in future? Just don't know what you do really. I do know I am not going to leave myself without for months and go back to beginning.

[Nackapan]

Main thing is you've tour own supplies so can get treatment and stay calm.

I personally would write to the Gp.

State you coukd get very I'll

Offer to self Inject.

I've just managed to get a prescription for b12 ampoules . It took over 3 months for decision in which time I bought my own with help from here.

No needles as gps cant prescribe them.

Only recently as scared they would stop and trialling a higher frequency

I'm still having mine at the surgery and I feel it safe .

I think there might be more of a problem if yiy dont push now getting them back.

Get a telephone consult timed after they have recueved letter.

They need to be told thus is treatment you need.

Just my opinion in of course. But it needs to be on your notes .

I think it's disgusting what's going on.

[Blueeyes57 in reply to Nackapan]

Thanks for your response. Yes I agree I do need to act on it. I found on the PA site a letter from a retired GP who has PA and self injects to the bmj stating how dangerous he feels it is for gps to leave patients waiting saying too risky with covid. He feels they should be encouraging patients too self injects as with diabetes (my point exactly!). I am going to send this with a note to my GP and will also speak to GP once received. It is so wrong and will in my opinion do much damage that is sad her diss in his letter irreversible if neurological.

[Sleepybunny in reply to Blueeyes57]

Perhaps you can draw GPs attention to the risk of permanent neurological damage such as SACD, sub acute combined degeneration of the spinal cord if people with b12 deficiency are under treated?

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

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

Blog post from Martyn Hooper's blog, mentions SACD

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

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link has letter templates people can base own letters on.

More info in links in my other reply on this thread.

[Sleepybunny]

Hi,

I left a long reply in this next thread with info on impact of pandemic on B12 treatment.

healthunlocked.com/pasoc/po.....

It includes links to recent PAS news items and blog posts from B12 Deficiency Info which have suggestions on how to cope if injections stopped/delayed/swapped for oral tablets.

I wrote another very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

B12 article from Mayo Clinic (US)

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

Suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful treatment should not be stopped

Warning

I believe that many UK patients who have been on B12 injections will find it difficult to get them reinstated even after pandemic is over.

1) There are moves afoot in some areas of UK eg Gloucestershire to move patients permanently to oral tablets.

Blog post about Treatment of B12 deficiency in Gloucestershire (April 2020)

b12deficiency.info/blog/202...

PAS blog post about oral B12 treatment (August 2016)

martynhooper.com/2016/08/02...

2) There is pressure on GP surgeries to cut costs...I think some GP surgeries see patients treated with b12 injections as an easy target.

Have a look at the comments under this recent BMJ article about PA (Pernicious Anaemia)

bmj.com/content/369/bmj.m13...

Some of the responses below the article from GPs are very concerning. See response published on 24th April. Attitude of GPs seems very questionable to me.

Costs £30 to get access to original article. There was a recent thread about this article on the forum.

PAS

Have you considered joining PAS (Pernicious Anaemia Society)?

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.

I am not medically trained.

[Linzism]

I was finally successful in getting injection from GP. I have PA and usually have them every 8 weeks. Receptionist and nurse refused but call with GP over ruled them. She did mention that there were talks of trialling tablets in long term and stopping injections and I think that those who seem to be accepting injection postponed now will be targeted first. If you appear to be going up to 12 months without injection they will almost certainly identify you as someone to trial on tablets. Don’t give in - keep calling and they should back down and invite you in. Mask and gloves and don’t touch anything and it is fine. Good luck everyone.

[Cherylclaire Forum Support]

How sad this all is.

Here we have B12 deficient GPs who have to wait until retirement to be open and honest about the frequency of treatment needed exceeding that of the guidelines.

Then B12 deficient patients, discovering the same to be true for them, being unable to discuss this with their GP -and secretly self injecting between their surgery injections to avoid deterioration.

Somewhere then, there's the possibility of a B12 deficient GP and their B12 deficient patient both self injecting in secret !

You are right: if GPs are not fully understanding the severity of the condition, reading the research, or following the latest (revised) BSH guidelines, they might yet be swayed by a fellow GP's personal experience. Let's hope so.

The only sensible way to eliminate the current risk is to allow B12 deficient people to inject at home by giving them B12 on prescription, delivered by the chemist if necessary. They could use Skype etc to ensure safe administration of injection or recommend a Youtube video- or make one themselves !

As for the risk imposed by putting people on tablets when they have relied on injections for years- without consultation, monitoring or creditable research ? >sigh<

If this is a money-saving ploy, it is a very short-sighted one .

Long-term, this could prove costly for all of us.

[Midnight_Voice]

It may very well be true that B12 is stored in the liver for a year, though the evidence is one sole trial.

But clearly, if we injectees are supposed to be able to get by on this ‘store‘, then those who can absorb orally aren’t going to need monthly tablets either.

So why give people tablets at all, during the pandemic?

So just ask your practice why they aren’t expecting tablet users to ride out the pandemic on this ‘12-month store’ as well as injectees.

The answer, if they can give one, would be illuminating.