How many times should we wait for new B12 level testing after loading doses?

[Emiroskui]

Hello dear friends. I wondered if how many times should we wait for a new B12 serum level test. I did my loading doses that can be reliableAppreciate any assistance

[Nackapan]

Mine were not retested. If injected 💉 the b12 goes straight into your system.

Your b12 levels will be high.

They are meant to say high.

Go by your symptoms not blood levels after injections start.

You will find what maintenance dose you need.

Very few manage to convert to b12 tablets or sprays.

If not an absorption problem tablets work to top up food.

Some absorb some b12 from food but not enough.

This happened to my sister .

Her vegetarian diet that kept her well for 30+ years now needs b12 supplements and symptoms of b12 deficiency resolved.

My daughter , mother and I need b12 injections .

Different regimes .

[Technoid]

Waste of time.

"Measuring vitamin B12 values during or after treatment, with the aim to measure the efficacy of the treatment, is of no use. "

from

b12-institute.nl/en/diagnos...

[Technoid in reply to Technoid]

in fact, if your doctor or other treating clinician sees the result (which will invariably be high), they may use this as an excuse to reduce or stop treatment (if you were receiving any).

IMO, there is nothing to gain from testing serum B12 at this point, and if you are still receiving treatment, everything to lose due to the very real danger of ignorant clinicians making a decision based on that result.

[Nackapan in reply to Technoid]

Yes my old surgery sent out blood forms with a letter .To everyone receiving b12

All to get b12 levels tested and IFA b tested.

If levels high( in range)

IFAB negative

B1e injections wouid be stopped !!!

Also too much b12 detrimental to your health stated

You can imagine I had plenty to say on that .

My blood form ripped up.

So wrong at every level.

A booked telephone appointment .

I did question the Gp.

Apparently s mistake sent to me ???

It was written by a receptionist.

Told by a G.p to do so.

Total ignorance 😒

[Cherylclaire Forum Support in reply to Nackapan]

My usual GP on holiday, I saw another one because of concerns about daily (and often nightly) episodes of heart arrhythmia that I didn't think could wait.

Huge mistake.

When the GP was told that I was self injecting B12, I sensed the panic : raised eyebrows the only visible sign. But then the rush to get me out of the surgery - so I knew a letter was pending.

The letter told me that, after a surgery meeting, my monthly NHS injections would be stopped if I did not promise to stop self injecting. This surgery meeting occurred without my usual GP's presence as she was still on holiday, and the letter arrived from this new GP before her return - which was a very quick response from someone I'd met for about five minutes total !

My GP had been unaware that this had happened until I told her.

Luckily, I did get my heart concerns addressed: a 24-hr heart monitor revealed 4,000 recorded incidents - I had ventricular ectopics: an uncomfortable condition but not dangerous. It appears suddenly for no reason and can disappear in the same way. I was offered statins but decided against them, hoping that the condition would resolve itself. A month or so later, it did.

Two options:

I could have lied and said that I had stopped self injecting.

I could have written back and tried to persuade this new doctor that I needed the additional B12, with some supportive evidence .

In the end, I did neither.

I did not bother to respond to him; way too ill to fight against a GP I was never going to see again. My choice. My usual GP assured me that nothing else would change: she would still monitor my ferritin, folate, vitamin D and thyroid etc (but obviously not my B12) and would continue to seek out help for me at secondary care level.

It had no real impact, apart from losing me one injection a month. Since I needed one every other day, it seemed the easiest option just to ignore him.

I've been IFab negative three times. My B12 has probably not been lower than 2000ng/L since 2016. Yet I still cannot manage my symptoms unless I have one injection every four days.

I have a functional B12 deficiency diagnosis from my usual GP, confirmed by the testing laboratory. Turner and Talbot suggest "such patients may respond to repeated high-dose injections of B12", the head nurse at my surgery said that there were only three or four patients (including me ?) at the surgery with this - that it was a "new thing" - and my GP said she'd only had one other patient in her entire career with raised MMA and subsequently the same diagnosis ten years previously (so that's two of us), but that she had managed well on one injection every two or three months. I asked her how she could be sure that this one other patient was not secretly self injecting. She didn't answer.

I have been honest with all of the medical professionals I have met in the past seven years. I have now stopped going to the surgery unless they call me. My usual GP has left, so have the two other GPs that I would have chosen to talk to. All now work in hospitals. I cannot choose to see a doctor face-to-face, nor choose which doctor I am given to speak to on the telephone.

Nothing is being monitored for me now, unless it is done in secondary care.

Absolutely no excuse for ignorance on this subject - look at how much we have all had to learn about B12 deficiency, in its many forms; despite being ill, with memory failure, cognitive problems, confusion, exhaustion.... not too much to expect from a GP to check whether there is an issue with over-treating a patient with B12. One of the nurses managed to check whether she was poisoning me when asked to change my frequency from one every 3 months to 3 injections a week: once she found out there was no danger, she was fine with me. Fair enough. But other nurses were either anxious or suspicious - given how obviously ill I was, I found this second attitude particularly difficult to have to cope with.

So much needs to change. NICE guidelines only the start. Education at all levels of the medical profession regarding b12 deficiency seems to be lacking.

We are all being let down because of that.

[Nackapan in reply to Cherylclaire]

Yes I totally agree .I've had so many run ins at my old surgery ( closed now)

Same as you one random locum doctor I had s telephone consult with not only didn't answer my questions i had from recent blood results about iron .

As so important wanted to get dose right .

Again as you state I had no choice do would be ringing.

Nothing said about B12 at all.

However when time to order my prescription it had been cancelled/stopped by that locum.

Wasn't even informed!!

Let alone a reason given.

B12 was not on the blood results .

I did write a short note .

Booked another telephone consult as no face to face.

A lottery.

This time got anotherGp I'd met once . A locum.

She reinstated my prescription.

At that time I could access gps comments on my NHS app.

Took note of doctors name who stopped my b12 without informing me or even mentioning the reason for my call.

The reason given for reinstating was not

Clinical need.

But 'the patient gets anxiety if' her' B12 reggime is challenged as discussed previously with ? MH

I left it.

'Her regime'

Nurses on several occasions have refused to give my b12 injection.

Getting the G.p .

Telling me noone has more than 3 monthly.

My mums b12 injectiins were stopped without explanation by a Gp.

On two occasions the district nurse team messaged her Gp to stop b12 as low priority in their workload.

All without a word .

Only discovered on chasing b12 due for mum.

Second time Gp rang mum then me !!

She reinstated them. Result .

The stress caused is appalling .

The time wasted on NHS time ridiculous.

Record keeping has gone downhill.

Then when good / rectified on my request so crystal clear the nurses still queried it.??

Then dependant on what Gp on that day the whole cycle repeated.

My new surgery decided not to allow me to seeing notes on the app.

Only codes .

And blood results .

I naively thought an I.T glip.

No access by phone.

Went in person as now able.

Took photo ID

Explained patiently to lead IT woman.

The app is wiped clean then they reload .

Even the only repeat prescription B12 wiped off .

5 months later .

4 letters later.

3 in person visits .

1 incoming phone call from pharmacist who rings every new patient and decides what to put back on repeat.

Prescription back on.

Errors removed

But still no access for me.

So now put s S.A.Rs request in.

I really did not want to do this .

But I'm so weary of not being listened to .

Should've been simple .

I've gone off on a tangent as I realise some of the reason so fatigued !!

We've all had so much to deal with on top of being ill.

We certainly have to pick our fights under the most difficult circumstances with no acknowledgement we are only doing this to get treatment we need. .

Not for 'the fun of it '

Or to be a 'nuisance '

Or because of mental health problems. ( well maybe if b12 withheld.

Too much precious time doing their jobs as my husband puts it.

Let's hope the new NICE guidelines really have an impact .

Also the work of PAS

Martyn Hooper

Tracy Witty

Dr.Chandry

Sally Pacholoch

Dr. H. Auwerda

G Minot

W Murphy

Dorothy Hodgkin

W. Castle

To name a few to be very thankful to in our quest.

[Cherylclaire Forum Support in reply to Nackapan]

You have not only had to fight for your own health, but that of three generations of your family. Repetitively.

I remember my GP saying that my daily symptoms charts were "bordering on the obsessive" - I told her that it wasn't obsession but desperation.

Maybe B12 not high on the list of priorities of a visiting nurse, but remains vital to us.

Never going back down that road !

Yes, thanks due to all of the above-mentioned, with a special mention to those who continue the fight on behalf of others while having B12 deficiency themselves.

[Dcarmarie76]

Hi I was with a lovely drs surgery. That l would definatly be on injections for life. ( Though only 12 weekly but face me a vial in between eventually as I was so poorly. ) P A runs in my family, iv been on p p is for twenty years also. Unfortunately my g p shut. So was transferred all ok to start. But suddenly decided I no longer need my jabs? I hadn't had B12 tested in a couple of years so not that excuse. I sent a long letter and not heard anything. About 4 months since I got my last one.

( My gran was always poorly with the same plus my first cousin. )

Assuming I just carry on myself else I'll be really ill again. Original level was 89 via a stomach consultant.

[Nackapan in reply to Dcarmarie76]

My surgery shut too.After struggling and fighting got a 2 weekly prescription.

New surgery so far have questioned but not changed anything .

Theve had such an infux of new patients it will only take time .

It should not be like this.

Yes reviews happen.

Last time challenged the partner that id never met messaged a neurologist I'd never met for advice .

Fortunately this unknown 'allowed' my regime to continue as nothing else found and a good clinical response.

My original level ( 106(200-900

Also mother daughter on b1e injections

Sister high dose oral

Not that I was ever asked about family history .

Hope you can get a doctors appt.

I've written alot of letters but it was telephone or face to face that got results .

Thank goodness you have your own supplies.

[Dcarmarie76]

Ok yes it's like a two month wait even for a phone appt. Got one start of October, as started me after waiting a year,,,,, on h r t. Letter etc was scanned onto records just not had a response yet. Was lucky at old surgery, nurse had the same thing. So got a B12 vial every few weeks. OBS realised I can do my own, but I buy them so know it's only about 50p a shot......

[Litatamon]

Helpful links -

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

All the best to you. Hope your recovery is going well.

[Emiroskui in reply to Litatamon]

Thanks for your help. It was so helpful🙃

🙃

[Hockey_player]

There is no point in retesting. If it works, keep using your B12.

[Sleepybunny]

Hi,

Articles about Testing B12 during Treatment

pernicious-anaemia-society....

stichtingb12tekort.nl/engli...