New to this site. Diagnosed B12 and Folate deficient Jan 2018 after complaining of a number of problems/ symptoms to my Doctor (I also have Reflux and Atrial Fibrillation). Don't have PA and IF was OK. Suspect Functional B12 deficient. GP agreed to loading doses and then 3 monthly injections. My health has improved immensely during the past 18 months after 10 years of suffering, I now have almost no symptoms.
During my last B12 injection the practice nurse said a note would be sent to the GP asking if I should continue as a new prescription would be required. Yesterday had a call from the nurse to say NO prescription would be issued by the GP.
I'm very concerned . I know as my B12 depletes over the coming months I will be back to those 'dark days'. My thoughts are to speak with my GP who I must say has been very supportive regarding my other medical conditions.
I would have no problem to self inject and also look at alternative tests to blood plasma , but I would rather find a solution with the GP.
Would welcome your thoughts and inputs as to the best way forward. Thank you.
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guitarman49
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Treatment for PA is B12 injections for life. There are other cuases of B12 deficiency that require lifelong treatment.
Unhappy with Treatment (UK info)?
I feel it is more effective to put queries about treatment/diagnosis into a letter to GP. Letter could contain symptoms, test results, personal/family medical history, extracts from UK B12 documents. In UK as far as I know, letters to GPs are supposed to be filed with medical records so in my opinion are less likely to be ignored.
If you were tested in the past, were both recommended tests done?
1) tTG IgA
2) Total IgA
tTG IgA test checks for a particular antibody to gluten.
Total IgA checks which patients have IgA deficiency.
Patients with IgA deficiency cannot make the antibodies to gluten that tTG IgA test checks for, even if they have Coeliac disease and they will need alternative tests for Coeliac.
If tested in past, did GP tell you that you needed to eat plenty of gluten in more than one meal per day for several weeks before testing?
One reason for a negative Coeliac result is that the patient was not eating enough gluten prior to tests so not enough antibodies to gluten were in the blood to show a positive result in tTG IgA test.
Any chance of internal parasites eg fish tapeworm?
Do you ever eat raw or under cooked fish? One potential sign of fish tapeworm infection is a rise in eosinophils (type of white blood cell). Eosinophil result can be found with Full Blood Count results.
Link about "What to do next" if B12 deficiency suspected
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Adequate treatment is vital. There is a risk of permanent neurological damage if B12 deficiency is untreated or under treated.
Have you asked GPs to explain to you why they have stopped your B12?
If you know the exact reason, it is much easier to argue against it.
Have you had your B12 levels tested recently? Some GPs mistakenly think that high B12 levels after treatment for B12 deficiency has started, are harmful.
Some UK areas are using out of date B12 guidelines, may be worth tracking down local guidelines on treating B12 deficiency and comparing them with national guidelines.
Practice Manager should be able to tell you.
GP/patient relationship
Asking questions and being assertive can affect relationship as some GPs find it difficult to cope with this. Have a back up plan eg another GP surgery to go to and I suggest taking a supportive person with you to appointments that might be challenging. GP smight be kinder with a witness present.
Wish I'd had a witness at some of the appointments I had....
Referrals
1) neurologist
If you have neuro symptoms, has GP referred you to a neurologist?
2) haematologist
NICE CKS link suggests GPs should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms.
I'd have thought you'd have been referred to a haematologist if your provisional diagnosis was Functional B12 Deficiency.
3) Gastro -enterologist
If you have gut symptoms, a gastro specialist should be able to spot signs of gut damage due to PA, Coeliac, H Pylori infection and other gut conditions eg Crohns.
Be well prepared for any specialist appointments, sadly ignorance about B12 deficiency can be found in some specialist doctors as well as some GPs.
If GP is unhelpful, are you able to consider private treatment? I will say that going to a private GP/specialist does not guarantee better treatment.
Thank you Sleepybunny for a very informative reply. Lots of information to read and follow up. I have made an appointment to see my GP Monday next week and as you suggest ask for the reason why he has stopped the medication. I can then reason with him to find a way forward. One injection every 3 months seems to do the trick and that's all I'm asking for. Seems the nurse generated the request although I did have a brief discussion regarding the subject with her and posed some questions I don't think she understands what the subject of B12 means.
Certainly the information in the links you provided would indicate that I should be treated for life. I'm 70 yrs old . Much appreciated.
Hello Sleepybunny Once again thank you for all the info it certainly helped today when I met with my GP for a review meeting relative to my recent post.
He did listen and when my next injection is due early October will take blood serum for B12 , folate and Vit D . I did ask about the validity of the test given that I am on regular injections and is aware of the guidelines. He does seem positive that I should continue with 3 monthly injections .We will see . I will push all the way.
Interestingly I also met with the nurse after my GP for a Shingles vaccination. Needless to say she was very apologetic , read the Doctors notes back to me and said she was also hopeful that injections would continue. Update you in 2 months time.
Hello 226lowlane Thank you for your reply. Now have appointment to see my GP so hopefully he will see myside of the discussion. If not then I will mention self inject (once every 3 months seems to work for me) and wait for the reaction. When you reach 70 yrs nothing seems to surprise me any more .
Sorry to hear your wife has to self inject so often hope the situation improves for her.
Unless your B12 deficiency was diet-related, and your diet was corrected, the NICE guidelines are crystal clear that B12 injections should continue for life, irrespective of any test results for B12 levels, which are no longer a reliable indicator once injections have ever been given.
If your GP is properly aware of these guidelines, you should enquire politely why he/she is departing from them.
Thank you for your reply. It's definitely not diet related although as mentioned I have gastro issues medicated with Proton Pump Inhibitors which can cause B12 deficiency issues. For me this is the most probable reason why I say I have Functional B12 Deficiency . I also had folate deficiency.
I have an appointment with my GP on Monday next week so hopefully he will reverse his current decision. Thank again
1) UK recommended treatment for B12 deficiency without neuro symptoms is....
6 B12 loading jabs over 2 weeks then a jab every 2 or 3 months.
It used to say a jab every 3 months but now says every 2 or 3 months so your GP may not know about the change.
2) UK recommended treatment for B12 deficiency WITH neuro symptoms is...
A B12 loading jab every other day then a jab every 2 months
If you have neuro symptoms eg tingling, pins and needles, tinnitus, restless legs syndrome, memory problems, balance issues, word finding problems, muscle twitches, numbness, etc then my understanding is that you should be on the second treatment pattern.
Help for GP
PAS website has section for health professionals which your GP may find helpful.
Some forum members have been prescribed PPI drugs for high stomach acidity and then eventually found out that the problem was actually low stomach acidity.
Did GP consider the possibility of low stomach acidity?
The symptoms of high stomach acidity and low stomach acidity are very similar.
You mention that you are 70 years old. I have read that a decrease in stomach acidity is possible as someone ages.
I know your replies are to another poster guitarman but id just like to say thank you for all the tips youve put on, i have been having the same trouble with my gps regarding b12 injections.
If you don’t have the injection every three months then your b12 will go down as you are deficient in it.
I really don’t think it would be her job to even suggest it, just keeping an eye on your levels than anything.
Seems a bit off to me but I would talk to your doctor or even write a letter voicing your concerns about it and how concerned you are then you will have a paper trail and if something like this happens again you will have something to go on again.
About 50% of people with Pernicious Anaemia do NOT have antibodies to intrinsic factor. So not having antibodies is NEVER a reason to rule out PA.
You clearly had a lot of benefit from B12 treatment, which confirms that you were deficient before. So indeed you should continue with treatment. It's extremely important for your whole nervous system (including the brain) that you have enough B12. Not getting enough B12 puts you at risk
You could * Speak with the GP * speak to the Clinical Commissioning Group * make a complaint - GPs are sensitive to those * register with another GP if you know one who is more sympathetic. * Or try sublingual / oral tablets 5000 microgram daily. You may find that this is OK for all you need. But really, people with PA should get their medication on the NHS [if you are in the UK that is]. * If all else fails, consider making a complaint or suing them. Or telling the GP if no solution is reached, you'll have no alternative left than to complain or sue them. After all, it's your health you're defending. I'm sure they'd rather settle for injections than pay for lawyers etc. But that may not help your long-term relationship with the GP - although they should not treat you any different for having made a complaint.
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