Gp to stop B12 again!

[greengrass100]

Hello,

I have a B12 defiencicy diagnosed March 2017 and have received 12 weekly injections from the surgery.

I have just received a random phone call from a GP from the surgery, to tell me I should not request any further B12 injections. I asked why and was told my last B12 blood test was 1360 (180-914) taken 20/12/18.

I tried to explain that I had just received an injection on 30/11/2018, 20 days previous so yes it would be high. The GP was very strange to say the least saying I had dangerously high levels and no further treatment would be provided.

My readings from diagnosis to date are

14/3/17 98 (180-914)

24/04/18 196 (180-914)

07/09/18 162 (180-914)

20/12/18 1360 (180-914)

As you can see I was deficient again in September so following fabulous advice from here I started to self injection. I gave myself loading doses again and have taken one evey four weeks since. I have continued to also receive them from my GP practice every twelve weeks. The GP who rang me today has still clearly not understood the information I provided him with from nice at the begining of my diagnosis (he at first cancelled all my loading doses and was over ruled by another partner)

I am now very worried about this and would also like to complain about him and his bedside manner again, could somebody please help me with my next step forward to educate this ridiculous man.

Many thanks for reading.

[fbirder]

I would join the PAS and give them a ring for advice.

[Annnon58]

I would carry on with SI and not bother trying to educate your ignorant GP as it will just stress you out and stress depleats B12 . I would send him some print outs of articles stating b12 is water soluble and non toxic , any excess is excreted in the urine . If your GP is unaware you SI it’s hard to explain why it’s at a high level to him . Your initial level of 98 is extreme low and it’s highly likely you have PA so injections should be for life , GP s need educating ASAP but it’s unfair for unwell patients to do so . Good luck

[greengrass100 in reply to Annnon58]

Thank you, its his arrogance that has annoyed me and other people will suffer because of this. Maybe I could request a test for this, don't think I'll ask him though lol.

[Wwwdot in reply to greengrass100]

Hi Greengrass

So sorry to read about yet another person who has encountered the wonderful arrogance and ostrich backside of the NHS. You are not alone and never will be alone now you are on this forum.

1. Take the advice already given and join PAS - best money I EVER spent.

2. Stop worrying about other people - YOU are the most important person!

3. You will have to row your own boat - take on this role now as that is the only way you will achieve the best quality of life.

4. Start with the NICE guidelines so inject EOD until symptoms disappear or plateau. (I plateaued so went to every day and the difference is incredible).

5. Ensure all your co-factors and vitamins are above mid-way, since adopting this approach (courtesy of insight from our lovely Wizard) I am making huge strides in my recovery.

6. Look to introduce different forms of B12 (again courtesy of insight from our lovely Wizard) as that has also made a huge difference for me.

There is also a number 7 but I this is work in progress and I have not yet shared with members but will in a month or so when I have more evidence/insight.

You can purchase all you need online, I get my B12 from Germany apohealth.de/en/products/vi...

and all the needles etc from a UK company

medisave.co.uk/bd-discardit...

medisave.co.uk/medisave-pro...

medisave.co.uk/sharpsguard-...

The needle depends on whether you inject intra-muscular (IM) or sub-cutaneous (SC) ie into fat - I do into fat - I find it less painful and I have plenty of it!!

Keep positive, and take control.

🤗🤗🤗🤗🤗

[Shhilo]

You could contact PALS but like Ann on said it will just stress you out. Trust me

[greengrass100 in reply to Shhilo]

Thank you, I'm going to look into making another ccomplaint about him, he isnt even my GP just another partner.

[Essence49 in reply to greengrass100]

Get the book it will equip you.

[JMN2017]

greengrass100

Can you get an appt to see the Partner that originally over-ruled the cancelling of the loading doses and try to get some sense out of him/her?

Fortunately, you are already self-injecting, which you can continue to do but that's not quite the point, eh?

I'm like you and would want to complain about this doctor. Firstly, maybe get advice from PAS as fbirder has suggested and then consider putting your complaint in writing. I agree, these doctors need education but, as Annnon58 and Shhilo say, it may well stress you out so please consider how you will stand up to the inevitable stress before putting in the complaint

Wishing you the very best of luck and lots of support

[greengrass100 in reply to JMN2017]

Thank you, I feel the stress will be worth it, I was totally ignorant of B12 until I came across the lovely people on here, I feel its my duty to make him understand. I'm going to inform the practice manager tomorrow of my intentions.

[JMN2017 in reply to greengrass100]

Good for you, greengrass100

Just take care and try not to get too stressed about it all. It's going to take a very long time to 'educate' Health Care Professionals but every little 'chip' at it will, hopefully, help ...

[Nackapan]

Good for you but take care. I got too stressed at one point when very ill when an injection was refused because 'the screen' said so. They gp put on the notes to try supplements. I had told him I'd tried them leading up to next injection. !!!Also a neurologist had said to have then 2 monthly . That letter on notes wasnt read

The every other day until no further improvement part was missed out. The nurses were no better either. They have all watched on from me barely able to walk, to walking on a straight line over the last 4 months. One G.p has had a complete turnaround and even sanctioned weekly as I didn't want to jump from every other day to 2 months as I got so ill when stopped before. So I would say gently gently and protect your self. But good on you

[waveylines]

I really feel for you....a mindfield of nonsense in the medical profession!

My surgery told me the max they can sanction is two monthly injections, -only a specialist can sanction more. It was my neurologist who did this.....but although theyve agreed & I offered to self inject am three months on waiting for the script as they seem incapable of sourcing syringes!! .....the B12 vials are prescribed! I started self injecting 6 months ago. Massive difference in me.

As I said I really feel for you. Join PA -they are very hrlpful.

Whatever you do keep your self injecting up.

[fbirder in reply to waveylines]

Your surgery lied.

Any doctor can do what's called off-label prescribing. They do it almost every single time they prescribe a medicine to a child.

Here is the UK government's advice on off-label prescribing - gov.uk/drug-safety-update/o...

And some quotes:

However, there are clinical situations when the use of unlicensed medicines or use of medicines outside the terms of the licence (ie, ‘off-label’) may be judged by the prescriber to be in the best interest of the patient on the basis of available evidence.

Healthcare professionals may regard it necessary to prescribe or advise on the use of ... a licensed medicine outside the terms defined by the licence (eg, outside defined indications, doses, routes of administration, or contrary to listed warnings).

Prescribers should pay particular attention to the risks associated with using unlicensed medicines or using a licensed medicine off-label.

Before prescribing an unlicensed medicine or using a medicine off-label you should

be satisfied that there is a sufficient evidence base and/or experience of using the medicine to show its safety and efficacy

So, any doctor is allowed to prescribe B12 more frequently than 8 weeks if they:

Think it would be in the best interests of the patient.

Are satisfied that it would be safe.

My GP prescribed my jabs every two weeks.

[Hidden in reply to fbirder]

Tha last 3 paragraphs of your quoted passage fbirder are the GP get out and enough to put any timid jobsworth into a flap. What a pity the instruction is so negative.

[waveylines in reply to fbirder]

Thanks fbirder for the info. Interesting. My GP is always pleasant but she told me it was the CCG calling the shots & she 'didn't dare.' as they told her what she may do......even though she was very impressed with the effects b12 shots were having. The neurologist was of the mind that I could carry on self funding the b12 shots as the NHS couldnt afford them.....it was only when I pointed out that I was retired that he was prepared to let the nhs pay for them.....the mind boggles!!! . It does annoy me that Ive jumped all their hoops/obstacles but still theyve not sorted my jabs! Am incredulous that the neurologist recommended the injections every other day in a letter to my GP surgery beginning of December but here I am beginning of March still without because they cant tract down the right syringes on their medical lists!!

If I hadnt started self injecting last August I dont like to think what state Id be in now.

Ive only pursued it with them because I want it on my records incase I was ever to become too poorly to look after myself in the future.....personally I can well believe they wpuld drop them off without realising the consequences. Very scary!!!

[Schenks]

Stuff them and self-inject. Safe supplement, safe injecting technique with hair-thin needles subcut. I got thoroughly whatstitted-off with my GP's appalling service and do it myself. And I'm needle phobic! Sorted.

[Hidden]

I detest these ignorant so called doctors.

My auntie died of pernicious anemia because she was denied her monthly b12 injections on the grounds her b12 was 2000. Her hair fell out she became a nervous depressed wreck with hallucinations amongst many more physical and psychological symptoms and eventually became bedridden and had organ and heart failure. They let her die. All of them let her die because of a vitamin being denied. She'd had pernicious anemia as a child and used to be fed liver in those days every day. She sufferd all her life with horrible symptoms and breakdowns and tried to commit suicide a couple of times because of the illness. Despite that she came through a war and married and had two sons. Only in her 70s in 2017 to have a doctor stop her injections and she died. So while we fight these ignorant doctors keep self injecting and don't think twice about stopping it ever.