Quite a newby

[barbegrub]

When first diagnosed a year ago, the practice-nurse said she didn't need to test for PA. B12 was 76 and symptoms spoke for PA. She has B12d herself.

3 weeks ago I went to try for 8weekly IM. Wasting my time. Said we dont do bloods once we'd started treatment but she disagreed. Said I needed testing for PA. So now I'm within range! And negative PA.

Doctor didn't say anything about my continuing with injections but, I was refused at reception because rules were no face-to-face contact yet. Got message next day to make appointment for flu injection!!! Phoned and said this didn't add up. Had to have phone consultation with nurse who didnt know why she was ringing me. Said I'm in range and she cant overrule doctors. Rang again, told no appointment this month. (Three weeks ago)

I went to chemist for my injection. £30. Second time I've done this.

I did manage to chat to nurse. I'd emailed circular letter for doctor with more information. Doctor hadn't seen them. Nurse asked to read them so I emailed them. She was interested that I'd said there is no evidence that says we cant have 8weekly injections. I think she may be more interested to verify truth that there is no evidence. Not heard back.

Dont know where to take this. My son suggested 12 weekly at surgery 12 weekly at chemist. That way I'd be injected every 6 weeks and cost would be much less. Loved this idea. Until chemist said she wasn't sure they could do that

[Nackapan]

Ive not got a PA diagnosis . I know I cant absorb tablets as tried.

I asked outright in March to see if my injections were going to be stopped. I sti bought some online with help from here.

I would buy tour own until you sort things with the surgery. Tiu could do SC if not trained or happy with IM .

Write to the surgery . Copy in practice nurse and local Mp

Tell them your symptoms.

It seems if any neurological symptoms makes it harder for them to refuse.

PAS can help.

Ar e you a member?

Loads of posts and I fo on this if you press the magnifying glass at the top and type in the search bar. You may know this . I didnt for ages .

If you e any letters staying yoh need injections from specialists include those.

I am getting my injections but I still bought some as situations change and I'm afraid my trust has gone ad at times the right hand doesnt know what the left is doing.

It's too important and an essential treatment.

[barbegrub in reply to Nackapan]

Thank you. I will ask about injections. Also need to know, when to book appointments. Seems I ring up and they cant book that far ahead or they cant fit me in for weeks. This all makes my injections further apart.

[Nackapan in reply to barbegrub]

Yes my daughter having the same problems at present. Shes been having them but due next week but they havent rung back from Wednesday. Why they coukdnt book it in is beyond me . Nurses rotas are usuallyeat least 4 weeks in advance!!

Probably got themselv4d in a desk mess with catch up when they shouldnt have stopped in the first place I bet flu vaccines taking priority!!!

[Nackapan]

I've just looked it up. It cost £64.19 for 100 b12 ampoules.Then the cost of needles and syringes and a sharps box. Approx £1 an injection

The NHS get discounts for bulk buying . The cost of the nurses time and admin. Still cheap.

Or try and get a prescription and get taught to do it??

I knew flu jabs would happen as targets and money involved fir the practice!!

[wedgewood]

The doctors should know that 1) a negative Intrinsic Factor Antibody test does not mean that you do not have Pernicious Anaemia. About 50%of P.A. patients test negative. Our own Chairman Martyn Hooper tested negative twice at first . There is a scientific explanation for this — but I cont have the knowledge .

2) Once injections have started , no testing is necessary . Your levels must always be high , but that does not mean you can do without injections .They need to be high in order to get some B12 into the cells .

If you get nowhere with your surgery, think about self injecting . The wrangling with the doctor is so upsetting and debilitating ,especially when the symptoms start returning . Give it some thought - it is easy , convenient and cheap- about £1.50 a shot .

I’ll send you the information that you need .Then you can give it some thought . Best wishes .

[Cherylclaire Forum Support]

Your B12 was originally 76- whether measuring in ng/L or pmol/L, that is very low.

So if not pernicious anaemia, then what is the probable cause ?

Within range and no PA now ? Shame on your B12 def practice nurse. She of all people should know better. If she believed that you once had PA, then she must know that PA is not a curable condition. So you still have it - or else she was wrong to begin with.

This original test result must be on your record. I would certainly start by getting a copy of this B12 reading, before asking your GP why it was that low originally. Forget the nurse. Write directly to someone at the surgery, whether practice manager or your own GP. This should then end up on your medical file, so more likely to get a response. Use this as an opportunity to list your symptoms and when they return, state why you think 8-weekly injections would benefit you, mention any neurological symptoms you have.

8-weekly injections are not dependent on PA diagnoses: the NICE medical guidelines advise GPs to ensure injections are every 2-3 months. Those with neurological symptoms require an injection every 2 months. This is meant to be the treatment in this case only after loading injections every other day, until no more improvement can be had.

Also correct in thinking that testing plasma for B12 deficiency after treatment commences is farcical: measuring that which has been administered -which is already a measured dose.

What useful information can that give anyone ?

If it is safe to give flu jabs, then why not B12 jabs at the same appointment ? Covid can no longer be used as an excuse for this delay. No wonder so many patients are being pushed into self injection. They could have been taught how to do this safely by a nurse, even if on Zoom or smartphone- at least for the duration of restrictions, or talked through it after watching a recommended video.

Risk-free cheap solutions where no-one need deteriorate.

[3rdNettydoon in reply to Cherylclaire]

Thank you. Good information. I will send a letter. The practice nurse didn't test for PA. She thought it was so obvious. It was a different Dr. Who seemed to see B12d isn't important, and my symptoms could be from anything. I will get access to my medical notes.

[Cherylclaire Forum Support in reply to 3rdNettydoon]

It's always best to ask for copies of your test results etc. My GP now does this as a matter of course.

It is useful to check for yourself on direction of travel with folate and ferritin etc , useful for appointments to consultants, who don't always get to see the bigger picture of your condition, and for situations where there is some later misunderstanding about it. For instance, I was once sent to the hospital, by a locum, to have a B12 blood test just after I'd had my injection at the surgery. Although immaterial now, this result will stay on my record - and might have had some impact on treatment frequency.

If you have an initial very low B12 level or a pernicious anaemia diagnosis- I'd probably ask for a copy of that result and frame it !