My b12 injection reinstated.

[salsadancer]

A few weeks ago I was having problems with my GP who wanted to stop my B12 for 6 months. I am very happy it is now resolved. First when I got tested 2 months ago my levels were 2000, my doc got me retested again last week, which came back, my levels were 1200; it had dropped by 800 in two months. A doctor still said that my levels were too high. I told him that I was not happy with their decision not letting me have my injections for 6 months. I also got in touch with the Pernicious anaemia Society, who told me that my doctors should never ever stop my injection regardless to what levels they are at, and that pernicious anaemia injections are for life and I should not keep getting my levels tested . They advised me to speak to my doctor again and let them know that I have been in touch with PAS and if they did not reinstate my B12injections they would be in touch with the GMC, to which my doctors was not happy about. I gave my GP the name and telephone number of the person I spoke to. He then put me on hold, when he came back on the phone the Doc said that they would reinstate my B12 injections every 10 weeks as I had before, only because they had dropped down so much.

I had my injection today and hopefully will feel a lot better soon. Thank you everyone who has supported me giving me advise. I hope other people having trouble with their GP gets good results too, you have to stick up for your rights and never give up. Best wishes everyone.

[clivealive Forum Support]

Brilliant news salsadancer and well done for persevering and saving your life.

Pernicious means fatal - deadly

[salsadancer in reply to clivealive]

Thank you Clivealive.

[wedgewood]

I second clivealive’s comments . Excellent !

[salsadancer in reply to wedgewood]

Thanks Wedgewood

[Foggyme Administrator]

That's really good news salsadancer...well done for persevering. It's never easy having to stand your ground with doctors so know how difficult it would have been.

But goodness, how much better if it had not been necessary to fight so hard for a simple but oh so powerful...and life sustaining vitamin 🤔.

Hope you begin to feel better very soon.

👍

[salsadancer in reply to Foggyme]

Thank you so much Foggyme.

[deniseinmilden]

Thank you for posting this - hopefully it will help others in your position and give them welcome encouragement.

Well done for your persistence. I hope you feel better soon. Because your levels have dropped you may benefit from additional sublingual sprays or tablets to help get you back on track.

[salsadancer in reply to deniseinmilden]

Thank you so much Denisemilden for your respond, yes I truly hope my post will help others people. thank you for your advice.

[deniseinmilden in reply to salsadancer]

Thank you!

[Sleepybunny]

Hi,

Glad to hear your injections have been reinstated.

To anyone else in similar situation....

PAS has following leaflets available to PAS members.

"An Update for Medical Professionals: Diagnosis and Treatment"

"Treatment is for life"

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

"doctor still said that my levels were too high"

Useful summary of B12 documents in third pinned post on this forum addresses issue of retesting B12 levels once treatment has started.

"Treatment with high dose vitamin B12 been shown to be safe for more than 50 years"

stichtingb12tekort.nl/weten...

"Misconceptions about a B12 deficiency"

stichtingb12tekort.nl/weten...

Blog post about B12 injections being stopped

b12deficiency.info/blog/201...

I am not medically trained.

[salsadancer in reply to Sleepybunny]

Wow thank you Sleeplybunny for taking the time to type all this information on your post. It will be very interesting to read some of them, I am sure the information will help others too. thank you once again.

[Sleepybunny in reply to salsadancer]

Hi,

Have written other longer replies in past. Might be worth searching for my other posts.

[deniseinmilden in reply to Sleepybunny]

You might not be trained but you're a lot more knowledgable - and willing to help! x

[Cherylclaire Forum Support]

........makes you wonder at what point the GP would have started worrying. This "how-low- can-you-go" method of reducing frequency, or stopping injections altogether, seems barbaric to me. In what other circumstance would that be the deciding factor ?

Well done, salsadancer , that took courage - calls for a little victory dance !

[salsadancer in reply to Cherylclaire]

Thank you Cherylclaire, yes it did take me a lot of courage, but the way I was feeling I knew I had to stick up for myself. I think most GP's are not clued- up about pernicious anaemia, I'm sorry to say. It was the most frightening this for me ( the doc's saying can't have my injections for 6 month) I had to do something.

Sure will have a victory dance now, lol

[deniseinmilden in reply to salsadancer]

Good on you!! x

[Mannequin18]

Hi, so glad they reinstated your B12.

I had the same problem last year. Fought them and they agreed to reinstate mine also. But (I know this sound wierd but they only pretended to do them). In November I was very ill and had various blood tests which came back PERNICIOUS ANAEMIA. And also possible Sjogrens or Lupus.

I now have my real B12 injections. You know when you have had one.

And now we have this virus to contend with, and some surgeries are stopping injections, and giving tablets, which are useless for PA.

Mine are still giving them at the moment. But for how long who knows.