Thank you

[Mrsmr]

Just ordered b12 ampules from apohealth again So easy. Being able to self inject and be in control of my own health is brilliant after being fobbed off for so many years and offered antidepressants . 10 weekly jabs via surgery is not enough. So a big thank you to Wedgwood for all the information. Merry Christmas everyone. Xxx

[MorningMist]

I’ve been there too, only I was refused any nhs injections because the serum test was just in range, active b12 test doesn’t exist according to gp & pc antibodies were negative. Homocysteine was raised but ‘they have no knowledge of that’ so couldn’t interpret private test result! 🤯🫠🫠🫠

And yes Apohealth are excellent.

[Jillymo]

Merry Christmas and hopefully a happier, healthier New Year.

Hope you have a cracking Xmas.

[wedgewood]

They woukd rather offer anti-depressants because injections take nurse’s time . They surgery would have to employ another nurse if all the PA patients who need more than the bog standard ration to keep well, would get what they need . That must be avoided . Why ? Think it through !

Really pleased that you now have what you need. Very best wishes .

Such great news ! 3 Cheers !

[Mrsmr in reply to wedgewood]

It's interesting that doctors are reluctant to prescibe b12 injections for those of us who are happy to do so which would save nurses time. I believe it is a power thing and can be a threat if we challenge the system and are willing to take charge of our own health . Just a thought!

[Nackapan in reply to Mrsmr]

I have many ideas what it is .I don't think it's purely a power thing.

My thoughts ;

The 'system' is robust for a reason but there are always reasons this doesn't fit all.

There are strict practice rules which as doctors can hoose to go against in the patients best interest but need to take professional responsibility.

Alot too wary to do this.

I'm guessing ignorance of how vital b12 is .

Not looking at an individuals needs .

I plod on confronting the issue at the surgery.

Writing in to get it on staff agendas

To get B12 on blood forms . Paper or electronic routinely .

Some minds are open .

I self inject with an NHS prescription.

So nurses time argument lost

But only after a letter from neurologist to cover Gps back.

Things change too slowly in protocols.

Licensing laws I.e Sc for B12.

However many many things are prescribed off licence.

I also think fear of getting sued in the current climate fir prescribing more than the guidelines.

Gps need consultant level back up assurance .

They are not all bloody minded or in power struggles.

Hands are tied alot of the time unless they take responsibility for prescribing more.

The G.p I finally stuck with had alot of peer pressure to stop my 2 weekly prescription.

One if whom refused to sign off my prescription if on duty .

Sadly that surgery closed so lost that G.p.

So had to start again at new surgery .

Even the pharmacy I.T kicked my 'unusual ' prescription off cancelling it twice !

This trend of switching to oral B12 disgusting .

With no scientific evidence or review .

I did a 'trial' as requested by G.p

so on my medical record .

Refused to stop b12 injections but willing to try and reduce frequency of B12 injections.

She saw it failed.

Lack of training.

Lack of knowledge

Fear if prosecution.

The biggest hurdles I find is no communication.

No continuity

Nurses meddling questioning prescriptions even though a PDF hax been signed .

They are covered!

Not sure why nurses oppose doing b12 more thsn 3 months if back covered.

Theve upset me the most.

And then stick a needle in you .

Precarious situation

One even told me I was lucky.

Didn't feel 'lucky ' at the time especially with her poor technique.

Apparently she had to buy hers .

Wasn't B12 deficient??

Avoided her after 2 or 3 appts.

Hospital nurses lent out .

Just do what's asked / prescribed.

HCAs do as well.

It's the g.ps and nurses thst get set in their ways and appear closed to more learning I find the hardest to deal with .

It shouldn't be this difficult 😪

[Cherylclaire Forum Support in reply to Nackapan]

I had a nurse ask me once whether the frequency I was being given (2 per week) was requested from the GP by me - or was the result of a request from a qualified consultant.

This unwarranted level of suspicion shocked me. Suspicious of what exactly ?

It felt like an interrogation.

I was so obviously failing on the "usual" ( 6 loading, then 1 every 3 months maintenance) that my GP had continued investigations and seeking information from experts. She had found my MMA to be still raised, despite the B12 injections, had ruled out renal issues, which gave her a functional B12 diagnosis, confirmed by the testing laboratory. She had checked the treatment frequency with the consultants: restart injections at a frequency of every other day (EOD).

2 per week was the most that I was given - as the nurses were busy.

My partner, friends, family, workmates, employers, students and GP were all delighted with the obvious improvements. Seems only the nurse was disgruntled !

6 months later, even this frequency was not having so much effect on symptoms.

I started self injecting every other day - and told my GP the day after I'd done my first one. Just in case she tried to talk me out of it. She didn't. I was very lucky to have a GP who understood my condition.

Lack of B12 treatment, incorrect treatment or undertreatment could become a thing of the past if the medical profession in general had any real idea of the possible range and severity of the symptoms. This would explain why so many of us have problems with being able to function: working, shopping, driving, thinking, talking, walking, speaking, standing up, staying awake, remembering ......

we deserve better.

[Brevis]

Do you mind me asking which type of B12 you have been able to order?

[Oneash in reply to Brevis]

Go for hydroxocobalamin.Cyanocobalamin isn't as effective, because it isn't in a form the body naturally sees.

There's methylcobalamin and adensosylcobalamin which are good too, but don't seem to be readily available in injectable form.

[Brevis in reply to Oneash]

Thank you

[Mrsmr in reply to Brevis]

Hydroxocobalamin.

[MorningMist]

I really wish some of the more informed doctors would organise a national campaign to make others/ health authorities aware of the extent of b12 deficiency and the impact of ignoring it. It is all so shortsighted. It shouldn’t be left to the individual to plead their case.

[goldengirl]

Did you buy from Germany or the Australian website? I have looked at a couple of German sites and they don’t deliver outside Germany or Austria.

[Mrsmr in reply to goldengirl]

Apohealth in Germany