Have written letter to Gp asking why practice nurse stop b12 injections in 2015 . This happen on second appointment, told her to give it me which she did, asked her to find out why. Have no record of anyone contacting me back ( had other health issues going on, so I forgot about it) big big mistake. Have asked for copies of all blood result from Nov 2015 up to now, their going to really love me.
Have had three b12 injections so far and wow can't believe the difference in me already.
Thanks once again for everyone's help,this site is a lifesaver and also thyroid uk
"Have written letter to Gp asking why practice nurse stop b12 injections in 2015"
Have you kept a copy of this letter? It has been known for letters to get lost.....
In the past I have said within letters that I want a copy to be placed in my file. It's my understanding that this is supposed to be automatic with letters. In my experience it can be helpful to meet with practice manager.
I did wonder if your injections were stopped because the nurse was following local NHS B12 guidelines. These local guidelines can sometimes differ from national guidelines. The BCSH Cobalamin and Folate guidelines came out in 2014.
Some local NHS guidelines have not been updated for several years and some not since the BCSH Cobalamin guidelines came out.
Local NHS B12 guidelines might be found by an internet search, a search on local NHS website, a FOI (Freedom of Information) request to local NHS website, even MP might be able to help.
Do you know what local b12 guidelines were being used in your area in 2015?
Sorry don't know about guide lines, but I think nurse just took it upon herself she had injection in her hand when she said you don't need this. Have already written letter to Gp and done copy, this will be my second request for copies, have also written to ask for copies of letters between gp and consultants. I have just recently been diagonised with PA, only found out due to help given to me on this group
Would suggest you go into receptionist late morning and offer to wait while they do copies of bloods and notes- be prepared to pay. I had mine done a while ago, didnt take long nor cost much for five years plus of notes.
Got appointment tomorrow will ask then, don't mind paying want to find out what the hell has been happening
If you have a confirmed diagnosis of PA, treatment is for life. This info can be found on page 8 and I think page 29 of the BCSH Cobalamin and Folate guidelines and in the BNF (British National Formulary) chapter 9 section 1.2
Most Gps will have a copy of the BNF on their bookshelf...
Has your GP surgery seen the BCSH cobalamin guidelines? I take a copy of pages 9 and 29 with me when I have appts and gave Gps a copy of the whole document along with a copy of martyn hooper's book
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
Are you a member of the PAS? they are helpful and sympathetic and can probably suggest useful info.
I found the summary of mainly UK B12 documents compiled by fbirder helpful, if you click on link to fbirder's profile page there is a link to summary and there's also a link in one of the pinned posts on this forum.
fbirder's summary has some very useful quotes that have helped me when faced with a medic who does not have a full understanding of B12 deficiency.
I also wondered if you had ever been tested for Coeliac disease which can lead to b12 deficiency because the gut can be affected.
A person with one auto-immune condition has an increased chance of developing further auto-imune conditions.
Having telephone appointment with doctor tomorrow to find out whether it's B12 definicency or PA, my great grandmother on my mother's side had PA, we have her death certificate which states she had PA, Have had celiac disease test came back OK.
Hope the GP is aware that even if IFA (Intrinsic Factor antibody) test is negative a person can still have PA.
Page 29 of BCVSH Cobalamin and Folate Guidleines mentions Antibody Negative PA. Martyn Hooper , the chair of the PAs tested negative more than once on IFA test before testing positive.
This post on Martyn hooper's blog mentions that some patients test negative on IFA test (3rd paragraph).
Thank you for all your help, will e-mail links to him, having problems logining into coellac disease assessment site. Username do I put my email address in, password sent for new one, didn't get email with new password.
Sorry to bother
Sleepybunny just got B12 levels off nurse 23rd Feb 2015 172 injections stopped
19 the Aug 2016. 173
Don't remember whether I said I have graves disease, still waiting for GP to ring will get back to you when I get answer re PA
Hope you can help me with b12 level, is this near to normal range
Thanks
@ sleepybunny sorry meant to add injection 1mg in 1ml hydroxocbalamin, just had 4th. Injection.
If you get a copy of results it should state the reference range for b12(cobalamin) in your area. It can be helpful to include ref range with your results. Different areas have different reference ranges. Your result seems quite low but might be within range for your area of the UK.
The BCSH Cobalamin and Folate Guidelines mentions treating people with a level under 200ng. I found it very helpful to read the entire BCSH Cobalamin document.
Sometimes people start a new thread when they update people about what's been happening.
Sleepybunny thank you for that will look at it tomorrow, Have written to Gp asking for copies of bloods. Will post when I receive them.
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Help with GP and Holo TC TEST/ MMA
So nervous and upset.
Pregnant and GP has stopped my B12 injections!
Unhelpful GP
