Hi, should have been having my 8 weekly injection tomorrow, have been told that there is a new protocol, they are insisting that a serum b12 test should be done, if this too high then no b12 injections. But two months ago, I was on Folic Acid and Iron Tablets, even explained that hospital diagnosed PA in 2014, after needing 4 blood transfusions. Still getting pins and needles in arms and legs. Was told that is normal, but why am I on pregablin?
Have been a bit down lately, this don't help, just feel like stopping taking all my tablets including levothyroxine!!! and then see what happens (hospital????). Maybe time to change doctors.
But I thought B12 injections were for life not when it suits the medical profession, especially since mine is not diet related and also my late father had PA.
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JoB69
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That's odd as I've just picked up my blood form and b12 is written on it!!
Testing is not required once on B12 injections. Bnf guidelines. I'm on 2 weekly at present so of course leveks will be high as yours will be. What a waste if money. Stress for us and goes against guidelines written. I might cross it off my form. Did you know they were testing it?
You need your injection on time and I would push to get it.
Makes me so angry. They wouldn't refuse insulin if your ladr blood testest showed back a bit low!!
That is rubbish . There is no new protocol that states that your b12 injections should be discontinued if your B12 serum is high . It will always be high when you are receiving B12 injections .
You have PA , so injections are for life . Ask to see the “protocol “ . Take a copy of the guidelines governing the treatment of PA to your doctor .( look them up in Pinned Posts ) Why would a doctor lie about this ?
It is the recommendations written by the British Committee for Standards in Haematology. They are the biggest brains in British Blood.
Highlight the bit on p. 501 that states
No further testing for cobalamin levels is required.
Plus, on the same page -
1 Patients suspected of having pernicious anaemia should be tested for IFAB. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).
2 Patients negative for IFAB, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-IFAB-negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response (Grade 2A).
What a shame is not the one next door. They have an extremely sensible guide to treating B12 deficiencies based on the BCSH guidelines. Might be worth printing them out as well.
a) Could ask practice manager for a copy. Suggest putting request in writing.
b) Submit a FOI Freedom of Information request to local NHS website asking for a copy of "new protocol"
I doubt if there is a new protocol and cynically I suspect a cost cutting exercise...
3) You could write a letter to GP outlining your concerns. Always keep copies of any letters written.
In UK, letters to GPs are supposed to be filed with medical notes so are therefore less likely to be ignored than info passed on verbally or on photocopies.
Letter could include symptoms, personal/family medical history ( eg relative with PA), dates of relevant diagnoses (eg PA), blood test results, current treatment, extracts from UK B12 documents etc.
"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".
This is one I plan to to read
" "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Help for GPs
1) PAS website has section for health professionals. It's free for them to join PAS as associate members.
There is a useful summary of B12 documents in 5th pinned post on this forum. Issue of retesting b12 levels is mentioned.
I am not medically trained. More B12 info in pinned posts on this forum. I've written some very detailed replies on other threads recently, may be worth searching for them.
I think your best bet is to talk to PAS.
You mention that you are in Yorkshire, there is a PAS support group in Yorkshire. If you join PAS you can then access contact details for Yorkshire PAS group. They may be able to give you some moral support and possibly suggest helpful doctors in area.
Some GPs find it difficult to cope with assertive patients and GP/patient relationships can deteriorate.
Do you have someone supportive who can go with you to appointments that might be challenging? Even better if they have read about B12 deficiency and PA.
I would also suggest being wary of giving out too much personal information and accidentally making yourself easy to identify in case GPs get upset. Some forum members have had unpleasant experiences with medical profession.
Some people on the forum choose to self inject if they are unable to get necessary treatment from GP. To my mind this is an absolute last resort though.
1) Recommended UK B12 treatment for those without neuro symptoms is ......
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) Recommended UK B12 treatment for those WITH neuro symptoms is ......
A B12 loading jab every other day for as long as symptoms continue to get better (every other day jabs could go on for weeks even months if improvement continues) then a jab every 2 months
After you were diagnosed in 2014, how many loading jabs did you have at start of treatment?
"Still getting pins and needles in arms and legs"
With neuro symptoms , my understanding is that you should be on second pattern of treatment.
Do you have other neuro symptoms eg tingling, numbness, insect crawling feeling, muscle twitches, restless legs syndrome, memory problems, balance issues, vertigo, tinnitus, clumsiness, bumping into things etc?
If you were not given recommended pattern of loading doses in 2014 or your symptoms especially neuro symptoms have worsened recently, you might be able to make a case for having a repeat of loading doses.
Referrals
1)With neuro symptoms, have you been referred to a neurologist?
I used to request referrals in a brief, polite letter to GP. GPs do not have to agree with requests though and in cash strapped times may be reluctant.
2) Has your GP sought advice from a haematologist? NICE CKS link (in my other post) indicates that GPs should contact a haematologist for patients with b12 deficiency with neuro symptoms present.
Sadly ignorance about B12 deficiency exists among some specialists just as among some GPs so be well prepared for any appointments. Hopefully if you are referred you'll be lucky and get one who knows about PA and B12 deficiency.
Local MP
If you are not getting recommended treatment then your local MP may be interested in your story and may also be able to help you track down this "new protocol".
I'm in Essex and doctors messing around here as well. I was on B12 injections every 6 weeks for approx 2 years and prior to that every 8 weeks for a couple of years. When I had my last injection the HCA advised the doctors had changed it back to every 3 months. Have had no consultation no blood tests and no communication regarding this. Am going to be writing in to complain but haven't calmed down enough. Seems ridiculous they whinge about giving an injection that costs very little but had enormous benefit. Have been thinking of self injecting for a while so this might force my hand.
My doctors did this about 10months back. 6 weeks back to 12 weeks. Now I'm a poorly struggling to breath mess trying to become stable again. My advice is do not get to where I am. Don't make do with 12 weeks. I'm currently self injecting every 4 weeks hoping to get back to normal. Not meaning in any way to scare you, just to give you a heads up.
Changing GPs tomorrow, who are going to arrange for B12 injection to be given before I go on holiday, spent most of morning on phone trying to get to know who has change the guidelines, I eventually spoke to a nice lady at N.I.C.E. who said that the guidelines have not changed, every 8 to 12weeks, spoke to the surgery that we are going to register at, they have confirmed it twice that how they give B12 has not changed, and they have no notification from anyone about changing how they give it out. Meanwhile, practice manager of current surgery has just returned my call saying that they have a new protocol but does not affect everyone recieving B12, guess I am one of those because I have it every 8 week is costing them more money!!!! lol
Fingers crossed that your new GPs are on the ball when it comes to treatment of B12 deficiency including PA.
So glad to read that you are going to be given a B12 jab by new practice.
"practice manager of current surgery has just returned my call saying that they have a new protocol but does not affect everyone recieving B12, "
I'd be tempted to ask, which patients are affected and for a copy of new protocol, if staying at a practice like this.
Might be worth someone contacting PAS to warn them that people with PA and other causes of B12 deficiency in your area are potentially being deprived of B12 injections.
"guess I am one of those because I have it every 8 week is costing them more money!!!! lol"
A bit of cynicism can be quite useful.
The B12 injection is cheap, probably less than a £1 per jab. What costs the money is nurses' time to give jab.
If you feel cost might be an issue at new surgery, you could ask to be shown by nurse how to self inject so you can do it at home with ampoules supplied by surgery.
One of the most valuable lessons I learnt in over 15 years of trying to find out what was wrong with me was that doctors are not infallible and some of them are not willing to learn from their patients. I had bad experiences and lost a lot of respect for the NHS.
If you're an older patient eg 60 plus, I sometimes suspect that there is age prejudice. Symptoms are too often put down to ageing. Maybe some GP practices think older patients won't challenge them.
It just irating, the practice nurse phoned me, said that because 2 new GPs are starting, they are checking each one for the IF factor, and mine was negative when I was first diagnosed, so the doctor said no she has not got PA, even thou my late father had PA and I also had to have my gallbladder removed due to stones and it was perforated, but no they are still not having it!!!! It was consultant at hospital who said it was hereditary, they did all the scans and everything at the time. Just don't understand what they are trying to achieve. I looked on NICE and it says that even if you have test negative for IF you can still have PA. She also said that the national guidelines for B12 injections are very very vague!!
Ideal T4 replacement therapy indicated by TSH 0.2-2.0 miu/L
These are my last of bloods done in April. I been telling since Jan that something was not right, he only decided to listen after my old man told him exactly what the situation was like
depends on what guidelines she is looking at though they all have some points where they lack clarity.
IFAB cannot be used to rule out PA as it isn't a very sensitive test and give false positives around 50% of the time.
Sounds as if the surgery is suffering from appointments of idiots who have no understanding at all of statistics - unfortunately this seems to be all too common and it doesn't just affect PA but a whole raft of conditions - which is my irritated rant.
The BCSH guidelines are quite clear that IFAB negative doesn't rule out PA - it refers to IFAB-negative PA.
The removal of your gallbladder is another another risk factor for B12 absorption problems.
The results below show folate deficiency (symptoms of which overlap B12 deficiency). You don't have any obvious anaemia though your RDW is high - if I remember the ranges properly - which could indicate a mix of macrocytic (B12/folate deficiency) and microcytic (iron deficiency - as your ferritin is very low).
If you are hypothyroid that can affect gut transfer and lead to absorption problems.
PA also increases the likelihood of folate deficiency.
I have had my thyroid out due to goitre with cysts, the doctor put me on iron tablets but couldn't tolerate them caused me severe stomach cramping, diarrohea etc. At moment, none of bloods are coming back great, back in 2016 when my old GP did my B12 serum it was bang in the middle of the ideal range, he was doing my injections every 8 week because become week 6/7 I was so exhaustive and lost all appetite, I could cook for anybody but not for me, my old man started doing evening meals then and I couldn't eat it, I would play with my food! Which didn't go down well! Got appt with new surgery tomorrow for registration with practice manager and they have promised to arrange appt with nurse for injection before we go away on holiday, they are rushing me n old man through the system so I can have my injection.
Anyone needing more B12 than the doctor prescribes needs to get on eBay for some. Don't argue with me, naysayers - people can just do it or not. Save your life and health by getting the right amount of what you need or have a fight with bureaucrats instead. Or do both.
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So, no B12 injections until further? notice.
Folate and B12 levels recent blood test results
Result of 'active B12 test'
