Stopping b12 injections

[Alfabeta]

Hi

Recently I posted that I believed that I receivedb12 injections because my doctor thought my b12 deficiency was PA related. I have since been having injections for 6+ years.

In my post, I stated that, due to suspension of injections at my surgery, I was going to rely on b12 tablets and b12 in food to see if it would suffice.

It has now been 10 weeks since my last injection and I have started to have a range of symptoms which may or may not be b12d related.

IBS symptoms

Mouth ulcers

Headaches

Dizziness

Fatigue

Peripheral neuropathy

My question is this:

Assuming that I do not have PA, is it likely that ceasing b12 injections after 6 years in itself (despite not having PA) one could get withdrawal symptoms from ceasing the injections.

OR

Is the return of symptoms an indication that I do have PA.

OR

Do I have a completely different set of problems relating to some other illness - even just acquiring IBS to my list of health issues?

Stay safe everyone.

[fbirder]

Write to your doctor. Include a copy of the latest BSH guidelines - b-s-h.org.uk/media/18259/bs...

Say that you want your injections and that you are worried the peripheral neuropathy is a sign of ongoing permanent nerve damage. cc: the practice manager, your MP, the local press, radio and TV.

[Traceyma in reply to fbirder]

Some gp practices in my area are allowing patients to self administer which my practice refuses to do. I have already got my mp and local CCG involved. The CCG wrote to all practices recommending patients be allowed to self inject if they wish to do so. My practice is still refusing and after 13 years I've been told my jabs will stop permanently unless I go back to having symptoms. I'm already having symptoms such as pins and needles as my jab is due now but I've been fobbed off with tablets. I will have no option but to source medication online to self inject

[Nackapan]

I think its symptoms returning. I havent a diagnosis of PA but b12 deficiency . I need injections.

Not withdrawal symptoms just lack of b12

[Alfabeta in reply to Nackapan]

Hi

Thank you for your response. It was Paresthesia rather than peripheral neuropathy.

Why would we need injections - I’m taking b12 supplements assuming that I can absorb b12.

[Nackapan in reply to Alfabeta]

I've tried tablets. My symptoms got worse. I didnt realise for ages that with absorbtion problems you cant store b12

You can have absorbtion problems without PA

Hence needing injections. If you e had them for 6 years and not questioned it I assume toy needed them.

[Alfabeta in reply to Nackapan]

I used to still get symptoms between injections even though I supplemented as well. I hadn’t had any symptoms for 24 weeks but that was, I think, because I had got my doctor to give me the injections every 8 weeks rather than 12. It’s been 10 weeks since my last injection so it seems logical that I will need an injection if symptoms are returning.

I think it might be that ones body has got used to high doses of injected b12 thus it cannot get enough from tablets and food. Sheer speculation on my part but this was my reason for asking my initial question - are we b12 junkies getting withdrawal symptoms when we cease.

Stay well

[Nackapan in reply to Alfabeta]

I think once on Injections your body needs higher levels of b12. Cant remember the explanation given.

Alsi with absorbtion issues you xant get enough from food or tablets.

Hence getting deficient in the first place.

So not withdrawal symptoms. B12 depleting symptoms.

Yes you stay well

[Sleepybunny in reply to Alfabeta]

Paraesthesia can be a symptom of peripheral neuropathy.

Link about Peripheral Neuropathy

nhs.uk/conditions/periphera...

I don't have a PA diagnosis but if I stop getting B12 injections my symptoms return or worsen rapidly.

[Frenchiebabe in reply to Nackapan]

If you do not have PA , but deficient in B12 it would be totally acceptable from NICE guidelines for you to review your B12 diet and to have tablets .

[Alfabeta in reply to Frenchiebabe]

Very true and desirable who wants injections if they’re unnecessary? I am now three weeks past my due date for an injection and I have light headed ness and paranthesia (sic) - these are b12 deficiency symptoms. I had hoped to get a check on my b12 levels to show whether my food and supplement intake were enough but I doubt if they’ll even do that at the moment. I can’t blame my surgery for wanting to protect themselves from getting c19 or for me to get it by going to the surgery but I’m sure that they have no right to arbitrarily refuse treatment for a recognised treatment when one has no other alternative other than trying to fund a supplier from outside of the NHS.

[helvella in reply to Frenchiebabe]

If the cause of low B12 is known, then the appropriate decision could be made. But there is not a nice clean dividing line between PA and "everything else".

1) We do not have a satisfactory test for identifying PA;

2) There are definitive others reasons for needing injections such as having had partial gut removal;

3) For some people, a regular injection is a more consistent and reliable approach than tablets. E.g. people with memory issues.

Mind, even the BNF appears to allow injections for dietary B12 deficiency.

[Alfabeta in reply to helvella]

Coronavirus update: how to contact a GP

It's still important to get help from a GP if you need it. To contact your GP surgery:

visit their website

use the NHS App

call them

The above is copied from the NHS website. I phoned about my b12 injection - the surgery has been closed for seven weeks but is still fully staffed. They will phone back for a consultation- I bet I say:

“I need my b12 injection”

They say:

“We’re not providing them”

I say:

“ what should I do then?”

They’ll say:

“ Take b12 supplements”

“I’ll ask:

“Why do you think I have b12 injections ?”

This is called a circular consultation.

[Traceyma]

I have been getting b12 injections for 13 years after a diagnosis of pa. I was informed by my gp yesterday that even after the pandemic is over I will no longer receive my jab and will have to have tablets. With pa tablets are not absorbed through the stomach so are not effective. I fully expect to get a full range of symptoms in the near future.

[Cherylclaire Forum Support in reply to Traceyma]

How many times will people be expected to deteriorate in order to prove that their condition is real ? Wasn't it real enough the first time?

A diagnosis of pernicious anaemia, being almost impossible to obtain given the lack of interest or reliable testing method, should be as immutable as a diagnosis for any other incurable lifelong condition that, left untreated, can kill you.

Or is that also up for dispute now ?

These tablets will be as much use to you as broccoli.

You know it, I know it... Matt Hancock? He's still not too sure.

Please don't wait until you are so obviously ill that even Gloucestershire would give you a jab. You might find it very difficult to get back again.

Take good care of yourself- especially if your GP won't.

Using the pandemic as an excuse to withdraw long-term treatment permanently is pretty shameful, don't you think ?

A B12 ampoule currently costs 65p, so if it's not all about money, what is it ?

[Traceyma in reply to Cherylclaire]

I totally agree. After 13 years taking b12 injections it now seems that I have to get ill to prove that I need them. When I was diagnosed I had severe neurological symptoms and I still actually have the tinnitus I developed then.I'm wondering if this is privatisation by stealth. Although the WHO consider this to be an essential medicine because it's a vitamin it can be bought and administered privately without the stringent checks that medicines have to comply with. I'm starting to think that they are deliberately making it difficult so that people will pay to get it done privately. My local pharmacy is offering b12 jabs for £30 and because I'm not prepared to do without I may have to go down this route!

[Alfabeta in reply to Traceyma]

If you had diabetes you would get your drug on the NHS and be trusted to inject yourself, B12 is far cheaper the insulin but we have to depend on our GPS to administer it! There is no sense in the position. I phoned today for my injection (2 weeks after it was due) only to be told that no appointments can be made and I need a consultation before anything can occur.

I really understand their position avoiding being a hub for C19 transmission for their sake and ours but, for pity’s sake, make the fricking ampoules available for purchase and self injection.

Can anyone state one reason why this is not permitted?

[Cherylclaire Forum Support in reply to Alfabeta]

No.

Have you given up on your self-experiment now ?

Yes ? Good, I'm so relieved . I get why you chose now to do it, but who is there for you if it goes a bit pear-shaped ? Obviously not your GP.

[Alfabeta in reply to Cherylclaire]

I’m three weeks beyond my injection date. I’m getting lightheaded and parathesia (peripheral neuropathy) is beginning so I assume that I am becoming b12 deficient again or just suffering from withdrawal symptoms from the injections.

[Traceyma in reply to Alfabeta]

I dont understand it either. 2 of my friends belong to a surgery that straight away allowed them to self inject. They were emailed a little instruction video and picked up the stuff from the practice. They have been given a years supply in case this goes on. If one surgery can do this why cant the others?

[Cherylclaire Forum Support in reply to Traceyma]

Like I said above, Traceyma - ampoules are 65p each.

People eventually resort to self injecting because:

- they haven't been able to get the frequency they need from the NHS, which in general seems to believe that unless you can "manage" on one injection every three months, you must be a hypochondriac or an addict- or there is something else fundamentally wrong with you.

If you are a woman, that usually seems to mean antidepressants.

Not all GPs are the same, but a mindset exists.

( GPs seem to be unaware that any of these "managing" patients are secretly self injecting between 3-monthly shots.)

- they can't afford to pay the extortionate price of private treatment: which only costs this much because they seem to realise what the NHS fails to see: that many people need more treatment than they are getting and are naturally afraid of self injection. So much so that they are willing to pay 45 times more for someone else to administer this, if they can.

(Wishing your sister was a nurse yet ?)

Still a lot cheaper than the intravenous B-cocktails offered by beauticians, but these are for rich people who don't need them at all. That's a whole world gone mad.

[Traceyma in reply to Cherylclaire]

I agree there seems to be a mindset emerging that these jabs are some kind of luxury that we dont need. After 13 years of taking b12 my gp suddenly decides I dont need them any more without even discussing it with me. I would have thought if a clinical review of an established treatment is taking place the patient should at least be informed and it discussed

[Cherylclaire Forum Support in reply to Traceyma]

Yes, it's the opportunist feel, the lack of transparency, and the uniformity of response that seems wrong.

[Traceyma in reply to Cherylclaire]

That's what is so worrying. I f they can do this to us what's next? X

[islandlass in reply to Cherylclaire]

Where did you get that cost from - 65p - in Uk? Think you had better check that out for UK. Last I heard it was much higher plus then the nurse to administer and equipment, all out of the practice budget. You should try hypothyroidism on top, same scenario and where T3 is needed, forget it, not a hope, except for a few rare occassions.

If you have P.A. then your absorption problems will be minimal if not non fuctional altogether so oral can be of little use to folk in those circumstances. I am still shocked at how badly people with life long conditions such as,PA, Thyroid etc are treated and can only say do not accept no teatment or be fobbed off with oral when your body is telling you otherwise. I need a jab every 3-4 days just to keep upright - then I am 78 - and cannot expect to be running around like a 2 year old. It is those on here who are much younger and having to cope with work and children that causes me pain.

God bless.

[helvella in reply to islandlass]

The British National Formulary does, indeed, now show a higher price than 65p.

bnf.nice.org.uk/medicinal-f...

Actually £1.74 per ampoule NHS Tariff price.

But that is only because of the perverse way they do things! Instead of prescribing five ampoules to an individual, they should buy 100 ampoules and simply use them up as patients come in for B12 injections. Like loo rolls for the WC.

[Cherylclaire Forum Support in reply to helvella]

Exactly. It's not like anything is going to change sadly, so calculations are , I would imagine, quite easy.

islandlass , 65p is what I just paid a few days ago.

But lets not split hairs; £1.74 is still a bargain compared to deterioration to the point of unemployability, registered disability, misdiagnosis, scans, consultants, blood tests etc.

[Marrob in reply to Cherylclaire]

Hi, can I ask where you buy the ampoules from, I am about to start self injecting! Thanks!

[Cherylclaire Forum Support in reply to Marrob]

Last lot was versandapo.de - still sending to UK. Needs "translate page" button as in German, but easy to use- and better to register first, so you get recognised as a customer next time.

[Cherylclaire Forum Support in reply to islandlass]

Me too. After 4 days, I realise I have pushed my luck a little far. If I don't realise, my partner is quick to tell me !

[Frenchiebabe in reply to Traceyma]

If you have PA with malabsorption then you can discuss this and request your notes are reviewed to see if it’s due to intrinsic factor .

May I just say all pts have been put on hold through NICE and CCG - it’s not the surgery that decided to withhold

[Seth12345]

Those sound like classic B-12 deficiency symptoms.