Still waiting on B12 injections resuming

[Evo25]

Hi

I normally get my B12 every 3 months. The last one was in February. I spoke to the surgery who put me through to the triage nurse just prior to the May injection I was due. I was told I couldn't get one yet and I'd need to wait.

I wrote a letter to the Health Authority, citing information from here.

I got this tesponse:

" NHS Tayside Medicines Advisory Group advised the omission of B12 injections as part of the COVID response. With regards to vitamin B12 injections, a single B12 injection even for a patient who has no B12 stores will last for up to 9 months. Most patients have considerable stores of B12 and hence their stores will last for several years. The only exception for this is for a patient with neurological signs who should continue their replacement regime.

We are now at the point in NHS Tayside to be able to advise that mobilisations towards a new working with COVID normal and i know that the administering of B12 injections is part of the agenda. "

This was in June. I'm still waiting. I get pins and needles in my pinkies and am exhausted all of the time. I've also go a serious case of the sighs. As I also have asthma?, it's difficult to tell whether it's the asthma or the lack of B12 causing it. My moods are swinging all over the place. My partner has the patience of a Saint.

[Nackapan]

You have neurological symptoms. Write and state that . Your injections must be restarted.

Where they got the information that a b12 Imjections will last 9 months is worrying.

If that's the case why cant I last 9 days?? Also why if that's the case are people getting ill

Why if that's the case are they given more frequently in the first place. ??

[fbirder]

" With regards to vitamin B12 injections, a single B12 injection even for a patient who has no B12 stores will last for up to 9 months."

Write back. Quote the above. Ask them for the peer-reviewed evidence that people with PA can go 9 months without an injection with no resumption of their symptoms.

[MissKota]

I’m so sorry to hear what you’re going through. I’ve been having the same difficulties, read my last three posts.

It seems to me that some authorities are using coronavirus as the coverall excuse for cutbacks.

[Coachlady11]

I am also still waiting for go to resume B12 jabs although I had a message saying they would give me a flu jab!!

All they say is that they are awaiting guidelines but won’t say what they are!!

I am self injecting and will continue to do so

I have a feeling that when they decide to resume b12 I will be sent for a blood test and will have to admit what I have been doing and I don’t think they will like it!!

[Cherylclaire Forum Support in reply to Coachlady11]

Well- your body, Coachlady11 .

If you were pushed into a position where you either deteriorated or self injected, it is not a situation of your making. If they cannot give you a long-awaited B12 injection at the same appointment as a flu jab, Covid can no longer be given as the excuse.

As fbirder said above, no proof exists that a single B12 injection will last for 9 months. Or even 3 months.

With no reasons given, B12 injections were gradually reduced in frequency from one a month to one every two months, to one every three months and now NICE guidelines (2014) state one every two to three months. So the latest advice appears to be saying, if anything, that at least for some, 3 months is too long a wait. If it was known that one injection would last for 9 months, all the surgeries would now be saying the same thing - and they clearly aren't .

If this latest is an experiment, it is a particularly cruel one. If it isn't, where is the research ? Hold your head up, do what you have to do to survive. Then I'd tell them the truth and if they don't like it, how do they think you feel about it ?

This is the question they should be asking.

[Tonyworks in reply to Coachlady11]

Hi, I have had PA for 20 years and I have been told that I will not be needing them because by b12 is high enough.

They stopped giving me the injections which were due in May (after 3 months). So I told my surgery that they may not be following NICE guidelines but I am, so I am now self injecting. I can only assume that they are going to wait until the b12 levels fall below the "normal" range.

I told them that they should not be testing my b12, but the surgery insists that they will not give me any injections unless I get a test!

[Retteacher]

The myth of stores of B12 lasting nine months of more seems to arise from measurements made on normal subjects. My husband says that in brief about 60% of the body's stores of B12 are held in the liver and are released regularly into the bile and have to be reabsorbed from the gut - difficult for patients with reabsorption problems. The amount held is about 1.5gm and in normal subjects about 7to 10 mcg is released daily suggesting that it will last 150 days plus. However, in most homeostatic systems as a deficiency develops more and more would be expected to be released. When Dr Chandy's patients were deprived of their injections after outrageous behaviour by a PCT their symptoms returned much quicker than expected - a matter of weeks in some cases. This is proof that the assertions being made by your PCT are misguided, uninformed and detrimental to your care. His book is sold via Amazon on a not for profit basis.