EOD on the NHS?

[Pa234aw]

I went for my first 4 weekly B12 injection at my GP surgery today. I was expecting some push back from the nurse but she gave the jab willingly.

I asked if many people are getting 4 weekly or more frequent injections. Just 1. Me! I’m a bit of a novelty as everyone else is on 8 or 12 weeks.

This is a busy surgery in a large town and I know they give a lot of B12 injections, but it makes it very clear that anything less than 2 or 3 months is very rare, and forget about EOD on the NHS?

By the way, I only managed to get 4 weekly with support from my neurologist (and him speaking to a haematologist). My GP wouldn’t have agreed otherwise and even then she sought a second opinion with haematology.

[Nackapan]

I had 6 loading doses . Then a 5 week gap.( supposed to wait 12 weeks)

The back on every other day for 5 months

Then twice weekly then weekly.

Presently a 2 weekly prescription.

On the NHS .

Like you I'd been seen by a neurologist .

And at one stage a second opinion sought by partner in yhd G.l practice.

Hax been challenged on many occasions.

Glad you've got a regime on thf NHS thst suits your needs .

It is possible and does happen.

Needs to happen more .

Also prescriptions for SI

I do both

[Pa234aw in reply to Nackapan]

Thanks Nackapan,

Glad you’ve managed to get to a good position with the NHS but it’s far from easy.

I do wonder how many are suffering with 8 and 12 weekly and simply don’t know that more might help. It’s certainly not volunteered by many GPs.

I don’t know yet whether 4 weeks will work for me. I‘m only 4 months into this journey. But if not I’m prepared to fight for more. I’ve already told my GP that I’d be prepared to SI but I need to work on that a bit more. Or find other options.

[Cobalt1312 in reply to Pa234aw]

Great job advocating for yourself Pa234aw! I share your wonder about how many people (don't) know they might be helped by more frequent injections, and if they have any idea about how to request them. Keep up your great work.

[Nackapan in reply to Cobalt1312]

Yes or more time on tests and Gps c9sujts when thr answer could be more b12 needed??

[Jason_h123]

I have been prescribed EOD from the GP since August 23.

This has been challenged once but I referred them back to the letter from Cambridge stating I needed EOD ‘while symptoms persist’.

This has been a battle but you can get it.

[Pa234aw in reply to Jason_h123]

Well done Jason. I’m sure it’s possible. But as you say, it’s a battle!

I was just so surprised that at my surgery no one else gets less than 8 or 12 weeks.

[Jason_h123 in reply to Pa234aw]

I think for every 1 person willing to battle, like most of us on here, there are 99 that still don’t have the confidence, or information to challenge the GPs and this really upsets me.

[Pa234aw in reply to Jason_h123]

Totally agree. But it’s a complex situation that highlights a lot of what’s wrong with the NHS, mainly at the point of entry through the GP service. A lack of training is part of this but it’s also no doubt a matter of time and money.

To me, their needs to be a dedicated specialist team that GPs can refer patients with multiple symptoms that are hard to pin down other than through a degree of trial and error through various ‘ologies’, which just wastes time and delays any solution. Especially as it can take months to see any one specialist.

Such a team needs to apply a functional or wholistic approach looking at everything in parallel rather than single symptoms serially as with most GPs or the individual specialisations.

Wishful thinking!

[Nackapan in reply to Pa234aw]

This has been tried in many parts of the country .Also trialging and sign posting.

I think apart from training there just isnt the staff .

Gps are leaving the NHS in droves.

Even trained specialist nurses are scant now and everyone queuing for months for routine reviews at the hospital that used to be done at the surgery.

As for only one ailment per appointment or not the inability to book 2 .that worked to a degree in the past it seems impossible when so many things cross over.

Also the lack of examination now .

How can you see tonsillitis or whites of your eyes on thr phone??

Clinical skills are being lost .

Symptom checkers on computers

Also computers for s choice of drugs !

[Darkvarnish9 in reply to Jason_h123]

It's not always about information. I have given my Doctor a printout from the NHS website, with my symptoms ticked, the MAYO clinic and the new report from NICE and even a report from Sweden (in English and based on a conference in England). That said that if you have Vit D deficiency you may well have B12 too. They never even bothered to read them.

I know this, when I explained that I had three B12 shots privately and my A.Fib disappeared, my nerve problems and the other symptoms seemed to improve. "But B12 has nothing to do with the heart" she said speaking slowly so that I could understand.

I think I would get more sense out of a stuffed bear. Yes, I did tell her about the NHS that was ticked and she just said "oh".

Have I heard anything more? Of course not. I did complain to the practice manager. No joy from him too, I think he is the problem.

My heart has been scanned and there is nothing wrong with it. But nothing has been done about that either, just a few tablets. I can't take them, as they make me more breathless. My 24 x B12 tablets a day, do more to control my hear and the other symptoms.

Next step, complain to the NHS.

[MorningMist in reply to Darkvarnish9]

B12 has a lot to do with the heart. I had ectopic heart beats for hours at a time, singly and in runs of two and three. Everything was found to be normal in tests I had but all of it resolved after a short while on b12 injections.

All my gp cared about was prescribing antidepressants, beta blockers, statins for good measure. The usual toxic cocktail.

[Pa234aw in reply to MorningMist]

Been there too!

I’m increasingly of mind that some of those drugs (given out far too freely in my view by the GP computer) have some bearing on B12 deficiency. I was on Amlodipine for high blood pressure this time last year (stopped after 6 weeks as a cardiologist coukd find anything wrong) and I’ve not felt well since. B12 deficiency was discovered 5 months later. I had no B12 deficiency related symptoms previously. I also think some common antibiotics have an impact too. Trimethoprim?

[MorningMist in reply to Pa234aw]

Yes antibiotics, metformin, PPIs among others. Modern medicine just applies layers of complexity to existing problems instead of trying to see what underlies them.

[Pa234aw in reply to MorningMist]

Drugs are cheap and easy!

[MorningMist in reply to Pa234aw]

Well, readily available I’d say. But there are too many people with complex issues, not enough doctors or time to unravel the mess or straighten out the system.

[OldmanD in reply to MorningMist]

I tend to agree with you. . . . . Even here which doesnt hold a candle to the NHS or worse NI NHS problems I simply take the 3 month jabs which keeps the box ticked as they have little enough time on their hands. . . . It is simply an unfortunate side to the our healthcare systems with and increasing amount of treatments, some of which are pretty intense and time consuming plus longer lifespan combined with lack of staff. . . . . . . I may get ridiculed for this but I do have a valid point. . . . . How many staff would a clinic need if they were to supply everything everyone demanded/needed.thought they needed. . . . . I dont think it is doable . . . . . i think I'd rather preserve whatever we have rather than put more load on a already weakened system. . . . . SI is easier than most think. . . . So easy I'd rather SI than drive even a few miles/kilometers and sit and wait on a nurse. . . . . For many SI will be cheaper than traveling to the clinic. . . . . There will be those who simply cannot bring themselves to do so but for most who do SI I dont think it came easy either . . . . When ye get sick enough you'll do anything. . . . .It was not easy. . . . I had everything sitting for several weeks prior . . . .. . . As to neurologist's and hematologists a good and willing GP can diagnose and prescribe B12 jabs just as Dr Chandy did and just as my GP did. . . . . . All that referring to here and there for most is a road with no end as most GP's/Clinics are simply not interested in in anything but the 3 month nonsense . . . . . I dont mean to wind anyone up but I know several folks who suffer similarly and the storey is equally a similar. . . . .

[Rosecup]

how did you get your neurologist to speak to the haematologist? I’m told my tingling calves and feet are RLS and not B12 related even though I have PA. Any advice much appreciated! Thanks

[Pa234aw in reply to Rosecup]

It was a bit of good fortune I think. My neurologist had explored other nerve system areas with MRI and other scans before taking more notice of my B12 deficiency, which came from a blood test he requested. My GP had been seeking advice & guidance from haematology but they deferred to neurology as I was already seeing that speciality. I mentioned to the neurologist that I felt that I was stuck between him and haematology with neither seeming to take the lead on the deficiency and that seem to spur him into action. He took then the lead to speak to them and between them they agreed to increase my B12 injections . I’ve never seen a haematologist. I think it’s a case of perseverance and maki g sure you follow up every angle and point raised but the key thing is getting someone on your side that’s prepared to go a bit further.

[Nackapan in reply to Rosecup]

Difficult.Get copied in the letter sent to your Gp .

Take it with you yo the specialist to read .

[Lasue]

snap! 4 yrs and counting since we both had to have our respective consultants ‘request’ monthly injections successfully and then at start of pandemic GP suggested tablets but thank heavens agreed we could self inject the only pair to do it at our very busy surgery and the regime has remained in place at first only one ampule each in the monthly prescription! Now 5 each every you guessed it every 5 months but as many on this site never run short as delivery from EU tops us up nicely thank you ☺️ the best of luck with your B12 journey and take care

[Pa234aw in reply to Lasue]

Lasue, out of interest, did the surgery show you how to SI? I’m prepared to go down that route, and I’ve mentioned it to my GP, but would be more confident if shown how by a nurse, and of course get (some) B12 on prescription. Thousands of people SI insulin (subcut) so why not B12? Would take a lot of pressure off surgery resources and costs.

[Nackapan in reply to Pa234aw]

I do subcutaneous injections of b12 at home.

Buy my own needles ect B12 prescription.

One doctor put of 6 against alot of opposition agreed.

I had to take responsibility probably s box to tick to do it.

The nurse refused to teach me IM or sc .

The latter because not allowed as prescribed off licence.

Many are sent honr from hospital too with anti coagulation to self Inject !

[Mixteca in reply to Pa234aw]

I was shown how to IM by a nurse at the surgery as I was reluctant to go there for more than a few of my 6 loading doses. B12 is only licensed for intramuscular injections, so they won't show you how to sub-cut - I know as I asked.

[MorningMist in reply to Mixteca]

There’s no logical reason for that. All the instruction leaflets from the the manufacturers no less state for either IM or subcutaneous use.

[Mixteca in reply to MorningMist]

Agreed, but that's how B12 is licensed for use within the NHS.