Helloo everybody , I have been diagnosed with PA last year but only given shots for three weeks then nothing! I have had regular blood tests but they keep saying it has to go lower. it has gone lower now , they are finally going to give me one shot and test me 3 months later. my Gp didnt even bother informing me of my result .i only came to know when i had to see the nurse for an emergency appt for a UTI. i was so upset that my GP could be so unbothered when I spoke to her. In the past months my life has truly been miserable. sleep all day .lost so much hair cant think straight .This is exactly what the Nhs want is me to die a long and painful death over a cheap vit b12 injection. i am crying as i write this. life is too short to be treated so badly. i will be buying and self injecting from now on.
GP is sooo bad: Helloo everybody , I... - Pernicious Anaemi...
Pernicious Anaemia Society
Call GP today ask for print outs of all your blood results in last 3 years with reference ranges. This is your right so insist. Ask for numbers specifically of last B12 results to be given over phone there and then. Post results here. People on here WILL be able to help you and there is hope. Have you had thyroid testing and ferritin folate and vit D? Make a list of all your symptoms. And print out the B12 treatment guidelines read and highlight the relevant sections so you are informed and armed next time you visit GP. Also is there another Doctor you can see? The treatment your GP have given you is shocking and she is not following the guidelines. You will get help here. There is hope. x
Hi, I know your pain and frustration as I'm in a similar position with my gp practice. This website is a godsend with advice and encouragement, please hang in there, I've read of people living productive happy lives when they get the optimum treatment for them whether that is taking it into your own hands or perseverance with the nhs. To survive at the moment I'm using subligual b12 liquid 5000mcg and b12 patches 1200mg these help but not ideal. Hang in there!
Hi jhumkah what an awful story of neglect. Are you sure you were diagnosed with Pernicious Anaemia as any doctor or nurse worth their salt would know that you will need B12 injections for life and testing your levels is practically less than useless as the injections will skew the results - unless they come back very low.
Is it possible that the next three monthly injection is the beginning of the "standard" schedule of injections? Ideally they should be every 8 weeks.
You really need to go back and demand to be treated in accordance with the B.N.F. and N.I.C.E guidelines for the treatment of cobamalin deficiency for patients with neurological symptoms such as you have as highlighted below.
Treatment of cobalamin deficiency
Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,
Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.
The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.
However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment
Also, if you have the results of your blood tests to hand, check whether your Folate was tested and if not ask that it be done and monitored as it is essential to process the B12.
Please don't give up the fight just yet. If you do have P.A. it is for life and you deserve to be treated by the N.H.S and you really do need to "stay in the system" if possible as self injecting will become a long, ongoing expense.
I wish you well
When you feel like giving up, dig deep, hold on tight and do not waver. A year ago I was where you are now. This site will not only save your life, it will give it you back. If you have taken the decision to self inject, good for you!LI have been s. i. daily for 6 months wow what a difference. Read this site daily, you will be amazed at what you will learn and try for yourself. Make sure you keep up with plenty of foods rich in potassium, magnesium and folate. Just google it you will find them. Be patient b12 deficiency for whatever medical reason is a slow rot. Recovery does not happen overnight. Look back in six months time and recall how you were. Now get your head up and smash a path through this.
Have you considered contacting the PAS (Pernicious Anaemia Society)?
They can sometimes intervene on behalf of members by writing letters. I'm sure that they would at least be able to point you to useful information.
PAS tel no +44 (0)1656 769 717
Messages can be left on answerphone. May take a couple of days for a response.
There are stories on Martyn Hooper's blog about how PAS has helped people. Think it's easier for PAS to help people with a definite diagnosis of PA.
This next link is about writing letters to GPs about B12 deficiency. The person who runs website can be contacted by e-mail.
"I have had regular blood tests but they keep saying it has to go lower."
Think your GP needs to read the "BSH Cobalamin and Folate guidelines" . Within this document I think it says that testing B12 levels after B12 treatment has started is irrelevant. I'd suggest you read the whole document. I gave a copy to my GPs.
b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency"
This should be on page 3 of listed guidelines or put "cobalamin and folate guidelines" in search box.
Have you read "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS. The book is up to date with current UK B12 guidelines. I gave a copy to my GPs.
He's also written other books about PA and B12 deficiency.
Unhappy with treatment?
MPs may also be worth talking to.
There is a lot of useful info about B12 in pinned posts on this forum. I'd recommend reading fbirder 's summary of b12 documents. Link to summary in third pinned post.
In the end after failing to get NHS treatment, I started to self treat as I felt I had no other option.
So sorry to hear your story, I get angry and frustrated with the system and the doctors inability to look past the end of their noses, I too am having an on going battle seeming to be running around in circles getting nowhere.
Try not to self inject only as a last resort as unfortunately that is what I did, and it is pretty much scuppered my chances of getting any b12 injections through the NHS or at least for the time being.
There are so many people on here that will point you in the right direction, ad if you haven't joined the pernicious-anaemia-society.org please do as they can help.
Good Luck xxx
are you based in the UK?
If so your treatment is appalingly bad - draw your GPs attention to the BCSH guidelines/NICE guidelines which state that B12 testing is not required unless there is reason to believe non-compliance with supplementation and that maintenance shots are every 3 months. Giving maintenance shots on the basis of serum B12 results after a deficiency due to absorption problems has been established is basically out of the ark in terms of treatment.
Thank you for all your replies. I'm so sorry I was overwhelmed and I needed to get away from this situation for a day or so. I am Hypothroid for 20 years plus. now have diabetes , high blood pressure. All my life I have had symptoms , When I first was given injection in Jan2016 . after a few months my blood sugar and blood pressure came down naturally. They never gave me again. I had to change GP due to moving and I have been here summer. I have since spoken to GP , had trouble getting my blood results. when I got the printout it says that I need to be on 12 week jabs . They (GP and diabetic nurse who ordered the test) have made every excuse for why this happened , mainly my fault ( I should of provided notes from previous doctor) , I need to be tested again, etc etc. I had my bloods taken on end of jan 2017 and now after finally getting my test results on 24Feb it clearly states on the results that b12 is low and need to be on 12 week injection. I spoke to nurse on 3 feb 14 feb then GP on 15 feb . The results were sent back to GP according to the test results on 2Feb but they failed to mention it. I had been seeing the nurse 2 times in Dec and then 2times in jan and each time telling her how terrible I was feeling and I that I felt that I need to see if my b12 are running low. finally she agreed to take a test in end of jan.
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