Doctor has asked to see me.......

[BeachArt]

I have been SI'ing for 6½ years now. I get some B12 on prescription, but just one a month. I buy the rest myself, and SI every 3 days. I put in my prescription last week and got a call today from the nurse. She said the doctor wants to see me to, and I quote, 'make sure I am doing it right'. I feel like I have been summoned to the headteachers office lol. I have a feeling the prescription will be stopped, and whilst I'm not relying on that B12, I want it on my record that I have them. Plus, I want the doctors to be more aware of B12 patients and the utter ridiculousness of the NHS's attitude to PA/B12d.Has anyone here told their GP that they buy their B12? If so, what reaction did you get?

[Nackapan]

I've had to see Gp too .My prescription was just stopped without being told by a pharmacist admin.

The new way apparently .

I imagine it was triggered by pharmacy or a nurse .

Have got my prescription back for now .

Ref. Earlier post.

My prescription is 2 weekly .

[wedgewood]

Yes , I told my GP and my insufficient injection of once every 3 months was immediately stopped !

[Narwhal10]

Hi BeachArt,

I think everyone has different circumstances and different countries have different treatment regimes. I was reading what happens in France.

The GP may just be checking that you are doing alright. So, the most important things to remember is that you have an illness, it requires treatment. According to your medical records, a monthly intramuscular (i.m.) injection of hydroxycobalamin keeps your symptoms at bay.

If you had had high blood pressure, would a GP start changing your beta-blocker medication if it was treating you just fine ?

Hope appointment goes well.

🐳

[deniseinmilden]

Yes, 8 years ago. My daily prescription for SI was suddenly reduced to 1 per month (which doesn't follow any guidelines) without warning, despite a neurologist's letter saying "no change in treatment".

I've never bothered to get my monthly injections from them, despite the ethical reasons, because it would just cost me too much in time, hassle, fuel, etc, and I couldn't afford to do it. And they were only 1mg ampoules so I had to supplement in addition anyway as I need 1.5mg per day.

Thank goodness for Pascoe brand ampoules - I've never looked back.

[Source in reply to deniseinmilden]

Hi, is that Hydro from Pasco that you take every day?

[deniseinmilden in reply to Source]

1.5mg in 1ml hydroxocobalamin.

[Source in reply to deniseinmilden]

Thank you! I’ve only recently started to SI EOD since mid September and can’t help but question whether I’d benefit from every day. I’ve had neuro symptoms for at least 6 years and feel/think I might/could benefit from everyday but I know I’d be going against protocol. It’s interesting that you do it and haven’t looked back.

[deniseinmilden in reply to Source]

The notes in some of the ampoules I've had, have said to use them every day so it isn't necessary not protocol.When I started to SI I was reassured by people who had been injecting every day for decades and somebody who had been doing it successfully for 38 years.

Since then several friends I've made have been injecting twice a day, including using the stronger ampoules, very successfully for years.

I can't believe how much I keep improving, even 8 years on.

[Source in reply to deniseinmilden]

That’s really interesting and helpful to know. I’ll give myself a bit more time and then think about maybe increasing. It never occurred to me to read the notes in the ampoules, mind you I’m following a doctors advice so I need to be mindful of that. Thank you for passing on your experience and knowledge.

[Ajane]

Yes, my GP knows I buy B12 & self inject every other day. Like you, I wanted it to be in my notes & to raise awareness at the surgery that one injection every 12 weeks is insufficient for so many people.

She acknowledges that my body needs it because of a recurrence in symptoms when I reduce the SI & she has arranged for my sharps bin collections. However, she is not prepared to give it to me on prescription 🤷🏻‍♀️.

[FlipperTD in reply to Ajane]

Shocking! Happy to do half the job, but not the whole thing. Inexcusable in my opinion.

[Jason_h123]

Mine knew, and prescribed it during covid every 2 months for SI, this then stopped when they had a post covid review.

Jump forward a couple of years and after a private consultation and referral letter they now have me back on SI every 2 days, and have prescribed ampoules to facilitate this !!

Hopefully yours will be sensible and listen to your needs.

[Espeegee in reply to Jason_h123]

Reading the comments here you'd think that GPs are a random bunch who just pick and choose treatments according to their whim and that there is no medical guidance whatsoever! Before you go print off the Nice guidelines about B12, if I remember correctly they're quite specific about the ongoing need for B12 injections for PA. He may just be being proactive but best to be prepared with "official" evidence just in case 😉

[Sleepybunny in reply to Espeegee]

NICE CKS B12 deficiency - Management

cks.nice.org.uk/topics/anae...

[FlipperTD in reply to Jason_h123]

A good news story for a change. Keep it up!

[Flintfootfilly]

I told mine. She was shocked but main concern was whether it was from a trusted source. In my records they use the phrase "supplements with a private supply from a trusted source" which probably sounds better than getting it from another country.

GP gives be an ampoule every two months, and I'm glad that's on my records, though who knows his long they'll continue that for.

If they invite me to a review, I will take a very short selfie video of me three days after a jab (knackered), and one four hours after a jab (far more normal). I describe how I feel in each video and it's a useful benchmark for me on whether treatment is still effective.

[Cherylclaire Forum Support]

My GP realised quite early on that I wasn't responding to the B12 injections (6 loading within a month, then 1 every three months) and was continuing to deteriorate. She had my MMA tested - it was raised. I was diagnosed with functional B12 deficiency and started on 2 B12 injections a week.

This worked - so GP continued this frequency for six months, until it stopped working so well. At this point, she reduced my B12 to 1 a month and sent me to consultants. She said that this had now gone beyond the remit of primary care.

At this time, I was trying to keep my job. I had four terms off sick and then an agreed phased return, starting with one day a week.

No other cause for my symptoms was found in six years of consultant appointments and many tests. When a locum haematologist advised my GP in writing not to give me more than 1 injection every two months, I started self injecting and told my GP the day after my first SI.

Her reaction ? She nodded, made a note of my intended frequency (EOD at first) and told me to ask the nurses if one of them would show me how to safely inject into my leg. (They wouldn't !)

It was another GP, in her absence, who later got my NHS injections stopped completely. A new one who I had not met before and who was unaware, it seems, of my medical history. He sent me a letter informing me that he'd taken this case to the group practice meeting and that this was their decision (while my own GP was still on holiday). Unless I stopped and complied with their 2-monthly regime - which, of course, I was unable to do without deteriorating again !

At first, I was devastated and furious. My own GP, when I informed her, told me that nothing else would change: I'd still have my folate, ferritin, vitamin D and thyroid levels checked and monitored by her. Never my B12, though: "Pointless". A really good GP who continued to support me and send me to specialists, who kept her promise. Unfortunately, along with two of her colleagues, she left post-covid to work in rapid diagnosis in hospital.

I was also honest with my employees, my work colleagues, my family and friends - and all of the medical professionals I met. I had to be. This can cause them to be distracted from the symptom/s and medical condition presented to them (the real problem) - but may also eventually get them to change their minds regarding B12 treatment and even recognise a link between B12 deficiency and the symptom/s.

So I would say that, if you are going to have it on record, tell a trusted GP, known to you - one who has your best interests at heart. Good luck.

[Bellabab]

I told him and he was shocked yet would not listen to the facts. Various problems getting ampoules prescribed and a pharmacist interfered which caused yet more problems.

Its clear there is a sustained campaign to stop adequate treatment from the top of the NHS or politicians. Currently my GP thinks I am addicted to injections. Me a retired consultant psychotherapist who specialised in addiction!!!!!

[helvella in reply to Bellabab]

We see the same suggestions of being addicted with respect to thyroid hormones (levothyroxine and, if lucky, liothyronine).

From personal experience, the last thing I and most others want is to have too much - or too little.

It sometimes feels like the experiences of, for example, benzodiazepines, are being translated to multiple other medicines without scientific justification or even rational thought.

Yet so many of these and other lessons are ignored with respect to some anti-depressants which seems to be offered at every turn to some.

[MorningMist in reply to Bellabab]

I am beyond shocked at all of this. I had a gp tell me ‘oh yes, the more injections people have, the more they want’. I just left without saying a word. Where to begin with such an attitude?

[BeachArt in reply to MorningMist]

Oh yes, because we all love to have such regular injections!! The sheer ignorance of some doctors is unbelievable

[LauraJane2 in reply to BeachArt]

Yes, I remember a nurse telling me that I must feel great after my injections. She believed they gave me some kind of instant energy rush. I explained that after I had had them I just felt vaguely normal, instead of feeling really ill!

[Sleepybunny in reply to MorningMist]

If you're in UK, I left some useful info in thread below for people having difficult experiences with B12 deficiency.

Patient Safety

healthunlocked.com/pasoc/po...

I wish I could say I was shocked but after years of being active on this forum and my own difficult experiences, I no longer am.

"Where to begin with such an attitude?"

Maybe give them one of these articles...

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

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

[MorningMist in reply to Sleepybunny]

I’ve read all of those articles many times, the problem would be getting gps to acknowledge that they have anything more to learn. I think club b12 might be a good recommendation though, with its emphasis on helping doctors increase their current knowledge about deficiency.

[Midnight_Voice]

A patronising smile, and the suggestion that any supposed benefit from anything more frequent than the NHS guidelines must be purely a placebo effect.

I asked where the medical justification for the NHS frequency, and the scientific research backing it up was (clue: there isn’t any).

Whereas our case might be purely anecdotal, and a little subjective, but we had arrived at an optimum frequency by a careful process of increasing the dosage frequency until no further benefit was obtained. And found a perhaps unsurprising correlation with activity levels that means varying that frequency between weekly in normal life and half-weekly when there is, unusually, a lot going on.

Now, why doesn’t somebody carry out some proper clinical trials along those lines?

Is it because it would be embarrassing for doctors to learn that they are underdosing us by a factor of anything from eight to fifty times?

[Wwwdot]

Hi BeachArt

I had six loading doses from GP in November last year but nothing else. I opted to see a private P.A. consultant who suggested EOD - GP stood back and has not made contact since and I stay clear too.

I send letters telling them how I am improving and how I am self treating. One GP will do a blood test every 6 months at the Consultants request. My nominated GP, who is head of practice, described my every day SI as “ridiculous” - no point talking to her!

It’s not the worst GP/patient relationship but it could be better for sure.

All you can do BeachArt is hope for the best and be prepared for the worst. Very best of luck.

🤗🤗🤗

[BeachArt in reply to Wwwdot]

Thank you Wwwdot. The premise, according to the surgery, is that the doctor wants to make sure we are administering the injections correctly. The nurse, at the same surgery, showed myself and my husband how to do the jabs. And that was 6½ years ago! So, we are of the opinion that a 'chat' is also on the cards. My husband is coming with me do that a) he can administer the jab in front of the nurse, and b) together we can educate her to the needs of PA/B12d patients, should the need arise. I'm not reliant on the ampoules from the doctor as I buy my own. But I want it on my medical records that I have them, and I want the doctors and nurses to be aware of us, and the many, many other patients out there that are struggling to survive on the NHS maintenance protocol.

[Wwwdot in reply to BeachArt]

Hi BeachArt

I think you have an excellent strategy and lovely you are approaching this as a team!

Ensure you have a team celebration when you come home regardless of the outcome!

I thank you for your selfless approach!

🤗🤗🤗

[Sleepybunny in reply to BeachArt]

Some help for GPs....

1) PAS (Pernicious Anaemia Society) website has a page for health professionals.

pernicious-anaemia-society....

There's no charge for health professionals to join PAS as associate members. Maybe you can persuade your GP and practice nurse to join PAS.

2) Perhaps GP would be interested in joining Club B12?

club-12.org/

Club B12 is a group of researchers and doctors who are looking into B12.

They have regular zoom meetings and have hosted a conference in UK recently.

3) A good article to pass to GPs.

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

[Wwwdot in reply to Sleepybunny]

Hi Sleepybunny

I will certainly try to get a GP from the practice to join Club B12. It would be great it attitudes changed.

Thank you

🤗🤗🤗

[BeachArt]

Well, I had my appointment earlier and, surprisingly, it was literally so the nurse could watch my husband administer my jab. No questions. No discussion. No debate. The nurse said that every once in a while the doctors like to make sure that people who have injections at home are still doing it correctly. My husband got an A*......but he has had a LOT of practice lol