Pernicious anemia b12 levels loading doses
I have just been diagnosed with PA, b... - Pernicious Anaemi...
I have just been diagnosed with PA, b12 was 187, my GP won’t do loading doses, she says this is just within normal range, is this right?
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Thorpe1984
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Where in the world are you? UK?
If you've been diagnosed with PA then it must be treated. Any Dr is being negligent to suggest you don't require loading doses.
I'm not sure how they can diagnose PA but not offer to treat it?
I have had one dose of b12 and now I have to wait another 3 months for another, I’m worried as I have a lot of neurological symptoms 😣
Do the doctors know the neurological symptoms you have? You should be on loading doses followed by every other day injections until no further improvement, if you have neurological symptoms. I'd suggest you call them and highlight the BNF guidelines. bnf.nice.org.uk/drug/hydrox...
I rang her and said I have neuro symptoms she basically said it’s probably to do with stress and coming off some anti depressants in may. She didn’t even ask what neuro symptoms I had, she said as my b12 was in range I don’t need loading doses. Reading what others have put answers the NICE guidelines this don’t make sense to me!
It's very unfair how Dr's go by the book and by the arbitrarily set numbers. All they care about is what the data says, not what the symptoms say.
Anything under 200 is generally considered deficient but of course there are differences.
Do you know what the range is? Are they saying you're 'low normal', hence the 1 shot?
Sorry I don’t have the figures, she said normal is up to 188 and I’m 187!
In that case 187 would make you deficient. The range should start from around 200 and go up to around 950 or so.
If you're 187 and the range starts at 188 then you're deficient.
Try to get hold of the range and then see how close 187 is to the start (i.e. their range may be 180 - 950, in which case you'll be in the normal range)
Ok many thanks I’ll have to ring my surgery and see if I can get a copy of the blood test, I appreciate your time
I think I said it the wrong way round I’m 188 and low is below 187
188 bottom range sounds right. I believe my surgery also use the same reference interval. My level was just 191 but tested positive for IFab. GP was confused (because I was still just range) but I started loading doses that day. The problem is that if you have already had an injection it will affect your b12 levels for months and she will use that as an excuse not to give anymore. I know it's hard when you feel awful but can you write a strong letter of complaint to the practice manager and request you are treated correctly as per the BNF guidelines. Add that neurological symptoms can become permanent if not addressed early.
Ok thanks, what is BNF? I don’t really know where to start with a letter but I’ll give it a go, do I address it to the GP or the practice manager? This is why she is confused cause I’m positive for IF but my b12 is on the cusp
This is the link to the treatment guidelines for B12 & folate deficiencies. Doctors confusion is precisely the reason they should be following the guidelines to the letter. After all, they are supposed to 'do no harm '. I would write to practice manager. You don't have to copy in doctor if you don't feel comfortable doing so.
bnf.nice.org.uk/drug/hydrox...
Even on their summary page at the beginning it quotes
Pernicious anaemia and other macrocytic anaemias with neurological involvement
By intramuscular injection
For Adult
Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.
Do you think this applies regardless of your b12 level?
Your doctors focus on your B12 level should have stopped the moment you received your positive IFab test result. You have Pernicious Anaemia and your Doctor is refusing to treat it in line with published guidelines. You are justified in pushing for correct treatment 🙂This previous post has good advice on what to write in the letter
healthunlocked.com/pasoc/po...
& this is a link to some more advice
b12deficiency.info/writing-...
Thanks so much
You can always add a new post for members to check the wording of the letter before you send it. Good luck 🤞
BNF stands for British National Formulary. This is the book every dr should have In their room at the surgery.
She said if she leaves it and doesn’t give me any it will undoubtedly just go lower because of the instrinsic factor, because it’s just above the normal level she won’t do the loading doses reguardless of my other symptoms 🤬🤬
Yes UK
Weirdly that's exactly the same level I was given today and have been prescribed a course of B12 injections. I'm in Scotland. The description pernicious anaemia wasn't mentioned so I've had to find that out myself. I'd go back to your doctor. He said mine was definitely below the level it should be and injections were necessary.
I also showed up an antibody for instrinsic factor which makes it pernicious anemia. It’s a protein in your gut that won’t let you absorb b12. My gp said 188 is within normal range of b12 that’s why I can’t have the loading doses 🤦♀️
Unfortunately, I read these posts very often, be it here or in German forums. If you don't mind, you can consider injecting yourself. Many of us do so, and I think it's the best way to take control of our health back.
All the best!
Thanks, it’s something I’ll definitely consider, I guess I’m going to have to see what happens, dr has agreed to give me 4 more injections over the next 4 weeks, better than nothing I guess. What an absolute nightmare 🤦♀️
Hi I'm no expert but from my own experience of PA for 11 years your doctor is wrong. When I was first diagnosed through having chronic gastric problems I had a great deal of trouble with mainly surgery nurses who insisted I wasn't low enough for B12 when I eventually got it they kept testing and would stop the injections saying my levels were high. I informed my gastrointestinal consultant who immediately faxed the doctors saying I had PA and he didn't want me testing just to continue with B12. Due to extensive nureo problems I get an injection every month. It was hard work getting to this stage just remember they are wrong and there is lots of material and help for you. Best wishes ❤
My B12 was 250 with neuropathy. I fought doctors for 12 years. The tingling and numbness had spread through my whole body. Constipation... I saw neurologists, cardiologists, gastroenterologist, allergist, an internist, etc.
This year I couldn't breathe. My pulse kept dropping down into the low 30s. My brain seemed to turn off for a second and come back.. I get something like an electric shock? The ringing in my ears was almost unbearable. I was in a wheelchair at the cardiologist because the numbness tingling was so bad I couldn't feel my legs. I developed a heart murmur. My pancreas was inflamed. My spleen was enlarged. But... "you're depressed. It's all in your head. I'll write you a prescription for antidepressants."
Anyway, a couple of months ago, a nurse practioner put me on weekly B12 injections. I can breathe again, My pulse is better. The ear ringing, numbness and tingling comes and goes. My stomach is a little better. I have had 8 injections over the last 2 months. I know I need more, but she says I need a neurologist to prescribe it. So far no luck. I'm back in the loop going from doctor to doctor.
Keep going and keep pushing forward. Go to anyone they care to send you to.
Answers can come from unexpected sources:
It was an ENT consultant in a major hospital, referring me on to a salivary gland expert for a procedure, who told me that I was doing the right thing by self-injecting every other day, to carry on and not get disheartened -that it would take a long time to get improvements but that I would eventually if I was persistent. He also said that all of my symptoms were because of B12 deficiency.
( By then, I had been self injecting every other day for three months, aiming for a phased return to work in a couple of months' time, in order to keep my job. )
He praised my GP for a thorough report (which he had read and could quote from), he looked at my tongue, he agreed that salivary duct strictures and salivary gland infections would also have an impact on my ability to get any useful B12 from food (extrinsic factor) - but most of all he was calm, knowledgeable and kind.
No tests, no bloods, no going over figures and dates, no need to feel like I was sitting an exam with half a functioning brain: he knew exactly what B12 deficiency looked like.
I hope you find someone like him. These people make a difference to your life.
CherylclaireForum Support
No.
The problems that most people currently have with the Intrinsic factor antibody test (IFab) is that a negative result is wrongly being used to rule out PA entirely.
40-60% of those with PA will test negative - so it is possible to have PA (IFab neg) - except some of the medical profession seem to be unaware of this, despite the fact that it is well documented in medical guidance. Martyn Hooper, the founder of the Pernicious Anaemia Society, had three tests before getting a positive result.
When you do get a positive IFab test result, it is 95% accurate, which is just about as good as a test result can ever be.
You have a positive IFab test result, you have neurological symptoms. The UK treatment advice is clear on this and your GP is not following those guidelines. Why send you for a test and ignore a positive result ?
In 2016, my B12 was196 ng/L. The local range started at 197 ng/L - so I got a loading dose of 6 injections, then one injection every 3 months.
When I deteriorated on this frequency, my MMA was tested and it was raised. This is unusual. eight months after treatment has started, and gave me a diagnosis of functional B12 deficiency, confirmed by the hospital laboratory. My B12 injections were increased to two a week which lasted for six months. After that, I struggled on the 1 injection a month that was offered, so started self injecting every other day, now reduced to every three days. Even at this frequency, I have some remaining symptoms.
My MMA remained raised for three years, then finally dropped down to a normal level in 2019. My B12 level has become immaterial (and probably immeasurable).
The point of the B12 injections is, as far as possible, to control the symptoms. So the frequency should reflect that. Pre-empting return would be the ideal, not waiting for deterioration to be the cue for the next one.
I had cognitive and memory problems, sensory overload, confusion and mood swings, dizziness, tinnitus, was prone to infections and slow to heal, problems standing up without support, had muscle weakness and shaking, numbness tingling and shooting pains in lower part of legs, lower back/hip/groin pain, osteoporosis, aching joints, diarrhoea, angular cheilitis, bleeding gums, swollen burning tongue, hair loss, yawns, slept for about 14/15 hours then woke up tired. Needless to say, I was unable to work.
Please use the link to the BNF advice quoted in NICE guidelines in order to get your GP to treat your pernicious anaemia with neurological symptoms appropriately. Nerve damage can take a long time to repair fully, and can become permanent if not treated, so don't wait.
Your GP sounds ill-informed about PA/B12 deficiency, the true range and severity of symptoms and about treatment -none of this is unusual. But I would definitely find one who cares enough to look at the guidelines -as that's definitely her job, not yours.
Let us know how you get on and wishing you luck.
Thanks so much, had a bit of joy this morning, I wrote gp a letter this morning and had a phone call within an hour! She’s agreed to do loading doses but that means another 4 injections at one a week 🤦♀️ Still better than nothing I guess, thanks for your reply
BNF indicates that patients with "neurological involvement" should have
a loading injection every other day for as long as symptoms continue to improve then a maintenance injection every 2 months
See BNF hydroxycobalamin link below.
bnf.nice.org.uk/drug/hydrox...
"She’s agreed to do loading doses but that means another 4 injections at one a week"
I assume she's counting the one injection you've already had as one of your loading injections and is then planning 4 more (one each week)...that makes 5 in total.
That is not what is in BNF.
You could ask if she's treating you according to BNF
If she says yes , you could ask her to check her copy of the BNF Chapter 9 Section 1.2 or send her a copy of BNF info above.
If she says no, you could ask her what guidelines she is using.
You might also want to point to point out that BSH Cobalamin and Folate Guidelines suggest treating those with neuro involvement according to BNF.
b-s-h.org.uk/guidelines/gui...
I'm pleased that you have got some extra treatment but it is vital that you get adequate treatment to prevent permanent neuro damage.
Think your best bet is to join and talk to PAS about what GP is planning.
Just wanted to add that NICE CKS (Clinical Knowledge Summary) below suggests GPs should seek advice from a haematologist urgently for patients with neuro symptoms.
cks.nice.org.uk/topics/anae...
Has your GP done this?
Link also indicates that patients with neuro involvement should be treated according to BNF pattern of treatment
Loading injections on alternate days until no further improvement then a maintenance injection every 2 months
There is no set time limit as to how long these every other day loading jabs can continue. Could be for weeks even months ...if improvement in symptoms continues then so should the every other day jabs.
Maybe you could pass this info on to your GP.
Having had some very difficult experiences with doctors has made me very cynical.
I've been wondering why your GP is not treating you according to BNF and thought...
1) Maybe it's financial pressure.
B12 ampoules for injection are cheap (less than £2 per ampoule) but nurses' time to give injections is expensive. There may be pressure on GPs at your surgery to save money.
You could ask to be taught how to self inject....this may end up with you paying prescription charge for ampoules.
2) Maybe there are local CCG/Health Board guidelines on treatment of B12 deficiency that differ from BNF and there could be pressure on GPs to stick to those.
GPs are allowed to prescribe off license if they feel it is in patients' best interests.
gmc-uk.org/ethical-guidance...
3) I wondered if your GP was trained in a country where the standard pattern of treating B12 deficiency is different to BNF.
4) Possible ignorance....perhaps GP is just not aware of BNF guidance on B12 deficiency.
Did you include a list of all your neuro symptoms in your letter?
Perhaps you could say in a future letters/conversation that you want to have the best chance of avoiding SACD, sub acute combined degeneration of the spinal cord and that you'd like to discuss every other day injections.
She may not even be aware that SACD is a potential consequence of B12 deficiency.
GPs get relatively little in their training on vitamin deficiencies and their consequences.
Might be worth passing on PAS leaflet about SACD to her.
PAS (Pernicious Anaemia Society) can provide lots of helpful info and support.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS membership
pernicious-anaemia-society....
Link about "What to do next" if B12 deficiency suspected or newly diagnosed.
b12deficiency.info/what-to-...
"I rang her and said I have neuro symptoms"
I recommend putting queries about treatment/diagnosis into a brief, polite letter to GP as harder to ignore.
See Point 1 and Point 5 in letter writing link below.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Other options besides letter writing if unhappy with treatment include
1) Making a formal complaint...can put strain on GP/patient relationship
CAB NHS Complaints
citizensadvice.org.uk/healt...
2) Talking to your local MP.
To my mind you are being denied necessary treatment.
Get proof of your PA diagnosis.
3) Asking for a second opinion eg see a different GP in practice, maybe change to a different GP practice although no guarantee of better treatment.
nhs.uk/nhs-services/gps/how...
4) Ask to be referred to a neurologist and haematologist if neuro symptoms present.
cks.nice.org.uk/topics/anae...
See first sentence in link above.
No guarantee of better treatment but they may make treatment recommendations to GP.
Get copies of/access to any letters written by specialists to GP.
Accessing Health Records (England)
patients-association.org.uk...
Some people access test results and medical records with NHS app.
5) Going to the press...I think of this as a nuclear option as likely to permanently affect GP/patient relationship.
Newspaper article about patient struggling to get B12 treatment in Scotland
eveningtelegraph.co.uk/fp/i...
And a positive follow up story
eveningtelegraph.co.uk/fp/b...
News story about MP in Scotland who raised concerns about treatment of patients with PA
douglasross.org.uk/news/mor...
Neuro Symptoms
Has your GP got a list of all your symptoms especially every neuro symptom including any affecting spinal area?
Untreated or under treated b12 deficiency increases the chances of developing permanent neurological damage including damage to spinal cord.
May be worth mentioning any concerns over possibility of spinal damage to GPs in letters/conversations as could nudge them to reconsider their refusal to give loading injections.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of above document
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
Low dose cyanocobalamin tablets are sometimes used to treat dietary B12 deficiency.
My understanding of UK guidelines is that B12 deficiency with neuro symptoms should be treated with B12 injections whatever the cause.
BNF Cyanocobalamin
bnf.nice.org.uk/drug/cyanoc...
There are moves across UK to put more patients onto high dose oral cyanocobalamin tablets as an alternative B12 injections. I have grave concerns over this.
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
See section on "neurological involvement" in above link if you have neurological symptoms.
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/anaemia-b12...
cks.nice.org.uk/topics/anae...
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I recommend you track down the local guidelines for your CCG/Health Board and compare them with BNF, BSH and NICE CKS links.
I think it is a good idea to know what you are up against locally as some of these local guidelines are unhelpful. Some local guidelines have been posted on this forum.
Search forum posts for "local guidelines" or try an internet search or submit a FOI (Freedom of Information) request to your CCG/Health Board asking for a copy of local B12 deficiency guidelines.
I hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum for how B12 deficiency is treated.
b12deficiency.info/blog/202...
Link about contacting NHSE about treatment problems during pandemic.
pernicious-anaemia-society....
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges and treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
There may be some details in the links that could be upsetting.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained just someone who suffered with unrecognised B12 deficiency for years.
Amazing info thanks 🙏
Just to agree with everyone else - if you've tested positive for PA, your level is borderline/low and most importantly, you're symptomatic, you definitely need injections. For life. And initially you should have them every other day until symptoms improve. Folic acid is usually taken alongside B12 injections too, and would have been tested with your B12 along with ferritin.
Feel like I have lost my fight a bit tonight! My plan is to take what’s on offer and see if there is any improvement, if there isn’t im guessing I’ll ask to be referred to a haematologist???
Keep on fighting...
I had some very difficult experiences with doctors but I learnt a very hard life lesson and that was sometimes the only person who is going to help you is yourself.
Weigh up the risks of possibly upsetting GPs by being assertive, with the potential consequences of not getting adequate treatment.
I fought for a very long time to get treatment but was refused and in the end was forced to treat myself...I did eventually get some NHS treatment.
I need far more B12 than in the BNF guidelines. We are all individuals and vary in what we need.
Time is of the essence in treating B12 deficiency.
I hope you see improvements soon.
On the plus side, you have a diagnosis and you are getting some treatment. Some can't get this at all.
If I were you I'd get a copy of all the test results and a copy of your medical records that state your diagnosis (or get online access to your record and do it that way).
This is because some people have found their diagnosis has been changed later, and some doctors unfortunately believe once blood levels have gone up that you are cured.
I would also type a list of all your symptoms. It doesn't always work with every GP but for me it was better to hand over a list of B12 deficiency symptoms and tick which ones I had than to talk vaguely about exhaustion, dizziness etc.
Some people also chart their improvement when having treatment and showing decline (if they have decline) if/when treatment is spaced out or discontinued.
I'm not sure if a haematologist would be the best specialist to see - people have had widely varying responses from them. Sometimes people see gastroenterologists or neurologists depending on symptoms but again, it depends on the individual doctor as to how much they know about PA. There aren't many specialists in PA.
You could also contact the Pernicious Anaemia Society directly for advice.
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