I have just been diagnosed with pernicious anaemia by a haematologist. I asked to be referred at the beginning of the year when my doctor refused to give me the correct treatment for B12 deficiency (170) with neurological symptoms in the hope that the consultant would back my request up - no luck on that score I'm afraid! I was given loading doses over the Christmas period - two weeks plus another couple of injections as a sop for my stressing the neurological aspect of my condition. My last injection was on 15 January 2016. The haematologist has recommended, on my insistence, injections every two months but ..... and this leads to my question - no more loading doses (I have checked this directly with the consultant after reading her report on our meeting). Is this correct or should I have another two weeks of loading doses? I have had my first two-monthly injection on 23 June and feel no better for it. Could someone advise me as to whether or not I should be agitating for additional loading doses asap please.
LOADING DOSES: I have just been... - Pernicious Anaemi...
LOADING DOSES
The guidelines are:
Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.
Did you notice any improvement in neurological symptoms while on the loading doses?
Yes. Those were the guidelines I was advocating to my GP but the practice would not comply as their protocol was (the usual) 2 weeks of loading doses followed by injections every 3 months - hence my request for a referral to a haematologist way back in January 2016 after being refused the proper treatment for B12D with neuropathy. And yes, I did feel there was a slight improvement in the neurological symptoms though, as my symptoms are not severe, I cannot be that certain. My problem now is that I have had two weeks of loading doses over the Christmas / New Year period then nothing until 23 June - as I was considering taking the Active B12 test and did not wish the result to be skewed. My GP tested my B12 after the loading doses and it was (unsurprisingly) 2000: she did agree with me when I insisted that the result was predictable given that I'd had over 6000mcg of Hydroxocobalamin in the last couple or so weeks! I have been told that the 2000 (whatever) in my blood in January would last for months and months and that I would not need a further course of loading doses pre- my 23 June first two-monthly injection. The haematologist says I do not need another course but I think I do. Can anyone tell me if I'm right?
Hello E-A-S. YOU ARE RIGHT!!! YOU ARE RIGHT. YOU ARE RIGHT 😀...shouted just in case you have trouble believing that your medics can be so stupid and obtuse.
The practice protocol you describe IS NOT IN LINE with any of the current guidelines. Fbirder correctly ststes the guidelines and the emphasis is on 'until no further improvement'. You should be having intensive B12 treatment until this point, decided by you and your symptoms and NOT serum B12 levels (as per all current guidelines and recommendations). Also, the B12 serum test has been shown to be very unreliable!
You're also right - once treatment with B12 has started, your levels will be high...this is simple a reflection of the fact that treatment has taken place. B12 injections should never be stopped or reduced simply because you have a high level. Your GP should be treating your symptoms, not your blood results. He may not know this - but you do 😀.
Should you continue to push for proper treatment - most definitely yes. I say this from experience. When I was first diagnosed I was given insufficient B12 (it took two years for my B12 levels to even hit the bottom of the scale) and I now think I may have some irreversible damage (time will tell). If I knew then what I know now I might not have been in this position (I would have pushed for treatment or resorted to self-injection). If your GP refuses to give you the right amount of B12 to make and keep you well, you may have to do what many others here have done. Resort to self injection. This is not difficult and there are people here who can help if this is the path you choose. It's worth saying that high levels of B12 (above 1500, I think) are required for neurological repair to take place. Lower levels of B12 will simply keep you alive but unrepaired.
You will probably have to fight to get your GP to provide the proper treatment. It might be worth getting together some evidence about current guidelines to send or take with you. If you look at the first post I ever wrote, lots of people responded with information and links to current guidelines. Look, in particular, for BNF, NEQUAS and NICE guidelines, but there's lots of other 'stuff' too. Fbirder has also put together a document which summarises all current guidelines which is very useful (Frank Hollis document).
Please don't be surprised if you meet a level of hostility that might surprise you. Many of us do, so you would not be alone. Just pop back here and you'll get the support you need.
Hope your symptoms continue to improve and please let us know how you get on.
Well said Foggyme - yet one more doctor to be educated...
Thanks Clive alive. So sad that there are so many... xx
Have you contacted the PAS (pernicious Anameia society)? They can sometimes intervene on behalf of members.
PAS tel no. 01656 769 717
Office open from 8am till 2pm every day except Sundays. PAS website may be unavailable at moment due to redesign.
pernicious-anaemia-society....
There are stories on Martyn Hooper's blog about how the PAS can help people. PAS membership costs are due to increase soon.
martynhooper.com/2016/04/30...
martynhooper.com/2016/04/24...
Link about writing to GPs if unhappy with treatment.
b12deficiency.info/b12-writ...
"Those were the guidelines I was advocating to my GP but the practice would not comply as their protocol was (the usual) 2 weeks of loading doses followed by injections every 3 months"
Perhaps you could find out from your CCG (Clinical Commisioning group), your MP, NHS England, or a FOI (Freedom of Information) request to local NHS area website whether the "BCSH Cobalamin and Folate Guidelines" are being followed in your area.
nhs.uk/servicedirectories/p...
I found out that local NHS areas often have their own B12 deficiency guidelines and some of these have not been updated since the BCSH Cobalamin and Folate Guidelines came out. Do you have a copy of your area's NHS B12 deficiency guidelines? An internet search, search on local NHS website or a FOI request may track them down. It helped me to understand why the treatment i received was not what I expected.
fbirder has a useful summary of mainly UK b12 documents if you search through his posts.
I gave my GPs a copy of the BCSH Cobalamin Guidelines and a copy of Martyn Hooper's latest book
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
Thank you everyone for your prompt responses. I do know that the protocol practiced almost nationwide in every GP surgery is wrong, and also treatment should be based on symptoms not numbers. I have done a good 6 to 9 months intensive research as has my daughter on my condition and the implications and treatment required and offered. My question is very simple - I have had 2 weeks of loading doses the last one being on 15 January. I have now started my course of two-monthly injections the first being on 23 June. Given the time lag between the loading doses, ie, January and the first injection, ie, June, should I have been offered / do I need a further 2 weeks loading doses before starting the 2-monthly injections. Both my doctor and haematologist say no - but I don't trust them!!!!! If the answer is yes, ie that I do need another course of loading doses then I must have another injection tomorrow which does not give me any time at all to 'persuade' my GP ......
Hello again E-A-S. I note that you say above that you have neurological symptoms. If that is the case, you should NOT have been put on two monthly injections at all. You should always have been on every other day injections...
However...don't ask for more loading doses...I'll explain why below...
The regime for B12 deficiency with neurological symptoms, as stated by the BNF, NICE and the BMJ etc. is 6 loading doses and then injections every two days (the intensive treatment stage) until no further improvement. The stage of no further improvement should be determined by YOU and your symptoms and not blood results or some arbitrary time scale set by your GP. Once you have reached this stage then the guidelines state that B12 should be given every two months. However, many people find that this is not sufficient, fight for more B12 and, if not given, resort to self-injecting.
I suggest that when you talk to your GP you simply ask for the BNF treatment for B12 deficiency with neurological symptoms (every other day until no further improvement. Your GP will have a copy of the BNF on his desk and will simply have to look it up. BUT its the second paragraph, so he/she will have to read further than they normally do!
I think if you ask for more loading doses he will simply refuse, stating that you have already had them - ridiculous, I know, but that seems to be how they think!
In short, you should be having B12 injections every other day until YOU are sure there is no further improvement in symptoms. This could take many months (years, for some people).
I see you don't have much time to get information together...hope you get this in time...just tell him to read the b****y BNF on his desk!! (Sorry for the ***'s but GP's who fail to treat properly make me cross). It states quite explicitly exactly what you will be asking for.
Good luck...let us know how you get on.
Dear Foggy - thank you so much for the response. The recommendation to direct my GP to the BNF information - on her desk! - is totally invaluable. I will let you know how it goes.
BTW it will also be useful for my 95 year old mom whose Serum result over the last three months have dropped from 225 (above but in the 'grey area') to 191 (the lowest figure in the range 191-?) both being reported as 'no treatment' on the test report. I am dealing with this in the coming month so wish me luck with that too!
Whilst attending the hospital last week to see the neurologist - this time NHS (thank goodness) after paying privately, we met a young girl of about 17 and her mom who was also struggling to get proper treatment. We were appalled - her reading was 60! I can't tell you how grateful they were that we had plenty of time to chat - the registrar had not turned up and no-one had thought to ask the question why until I queried the nurses an hour after my appointment was due ... I was first on his list of seven groups in the waiting room! Apparently he had cancelled the surgery but the message had not got through! UN-BEE-LEEE-VABLE!
Before I finish I must just ask again. Do I really need more loading doses given that I had had them around Christmas. The neurological symptoms I had were very mild though worrying and I am presently satisfied that they have almost disappeared.
I thought I might need another two weeks worth of loading now as the serum reading way back in January was 2000 after the loading doses (of course!) and I was concerned that it may have been used up since then. I can now see that I should have had another serum test, or done as I was planning to do and had the Active B12 test, before the injection last week then I would have known my current B12 level for certain and been able to argue the case for myself. I just need to know whether anyone thinks the 2000 in January would have 'lasted' until now as I delayed following it up immediately in January with the 2-monthly injections straight away!
Hello E-A-S
Haven't much time at the moment so will be quick and answer first set of questions - will return to the rest later today.
Loading doses are the same as doses on alternate days (i.e. Both contain 1mg Hydroxocobalamin). The difference is that loading doses STOP after six doses. Alternate day injections for neurological symptoms should carry on until you stay stop. You will be asking for LESS treatment if you ask for loading doses again (and you GP will probably refuses as he will say you've already had them). And When loading doses stop, after six, you would then have to argue again to get every other day treatment.
You do not get a higher dosage of B12 with the loading doses - the dosage for both regimes is 1mg of Hydroxocobalamin per injection.
So...if you ask for loading doses you will get LESS B12. If you ask for BNF recommended treatment for neurological symptoms (every other day) you will get MORE B12 for longer.
Also - take care with the concept of symptoms that have 'almost disappeared'. They need to be COMPLETELY GONE then add a bit of extra time to make sure. If you reduce treatment too soon your GP will be extremely unlikely to increase you B12 again.
Need to say something about blood levels, serum B12 etc to help you clarify some of your thinking...but out of time...will return later today...
Good luck with your GP....stay strong and don't let him browbeat you xx
P.s. They are called loading doses simply because they are the first ones you get and they are supposed to top up your B12 stocks.
It is what happens AFTER that that is most important to people with B12 deficiency.
Many people struggle to get enough B12 after the loading doses.
Xx
Thank you Foggyme. I think that has answered my question - no more loading doses necessary then. Once you have had them - no matter how long a time span before you start your life-time course of treatment (whether every 2 or 3 monthly) - there is no need for further loading doses?
That's right. You have already had the loading doses.
What you now need is B12 injections every other day...intensive B12 treatment for neurological symptoms.
This is the regime you should have been on directly after the loading doses.
Dropping back to two monthly injections should not happen until there is NO FURTHER IMPROVEMENT TO YOUR SYMPTOMS. Your GP may not know is!
Good luck X
You are right Foggyme - my GP was willing (under great pressure and insistence from me) to give me the correct treatment for B12D with neurological symptoms immediately after the two weeks of loading doses before Christmas 2015, ie, continuing injections every other day until no further improvement. That was until she consulted her colleagues in the surgery. When I insisted again she capitulated and re-started the every-other day doses for the second time and then consulted the haemotologist I later saw who, as a sop to my pleas, suggested injections every 2 months rather than the surgery protocol of every three months - but stating categorically that any further every-other-day injections should be discontinued! How disappointed and frustrated do you think I felt after my hopes had been raised that I was really getting somewhere with my GP for the proper recommended treatment for B12D with neurological symptoms not just once, nor even twice, but three times!
I can't tell you how grateful I am that my neurological symptoms were slight rather than severe and seemed to improve during the initial series of loading doses. I'm hoping now that they do not get any worse and that the neurologist that I saw last week (although the 'suggestions' he would have made for treating my problems were to say the least bizarre) will come up with a reason for the icy coldness I suffer in my feet and the feeling that I have of wearing ankle socks (though the latter peculiar feeling has diminished since Christmas thank goodness).
One interesting thing that the neurologist happened to mention, in passing, was that the nerve conduction test that I had had was only sophisticated enough to asses severe nerve damage. Slight to moderate damage could not be picked up by this test!
Hello again E-A-S. Oh dear, this seems to all be a bit of a tangle!
First, the icy feeling in your feet and the feeling of wearing socks is a classic symptom of B12 deficiency!! It's probably diminished due to the B12 injections.
It should be unbelievable that TWO consultants have not only refused to treat you with the recommended treatment for B12 deficiency with neurological symptoms, but have stopped the treatment you were having! Unfortunately it's not - the same has happened to me and I think it's shortly going to happen again!
I think you really should keep on at your GP. How about asking her to provide evidence stating why she is flouting the guidelines and, in particular, what the dangers are of giving the 'extra' B12. Ask for it to be provided in writing and attached to your medical records. You could also put your own request for more B12 in writing, giving lots of evidence from this site. Ask her to explain why she has stopped the recommended treatment and ask her to confirm, again in writing, that you are not at risk of irreversible neurological damage or Combined Subacute Cord. It might just frighten her into reinstating the every other day jabs!
You really do need enough B12 to ensure that healing takes place properly or things will just get worse over time!
Earlier in your post you were talking about serum b12 tests and active B12 tests. Not sure how much you've read so here's some information for you (apologies if I'm saying stuff you already know). Please excuse me if just throw down some sentences without proper joined up linking words - getting tired and it will be easier for me. What follows is all according to various current guidelines. Here goes:
Once treatment with B12 has started, serum B12 testing does not need to be done again UNLESS looking for LOW levels - in which case more B12 should be given.
Normal or high B12 levels, after injections, are simply an indication that treatment has taken place.
Your GP should NEVER stop your B12 injections because you have normal or high B12 levels.
Medics should ALWAYS treat your symptoms - not your blood results!
A normal or high B12 level only tells you how much B12 is sloshing around in your blood. It does not tell you what is happening at a cell level - you could still be severely deficient, even with a high level.
Post-treatment, it can take B12 levels up to two years to drop down and be within what are called 'normal range'.
Always get copies of your blood results. Medics will often tell you that results are normal when in fact they are far from it!
The active B12 test has some limitations. It will only tell you how much B12 is in the cells. It will not tell you if the body is able to properly use the B12 from your cells.
So...you could have a 'normal' active B12 result but still be B12 deficient (i.e. If you do not have enough HTCB11 cells to carry the B12 to where it's needed, you can still be B12 deficient even if there's lots of B12 in you blood has made it into the cells.
Not many GP's have heard of the active B12 test and any who have will often refuse to do it.
BEWARE: if you do manage to get this test via the NHS and it comes back 'normal', you may well be told that everything is okay - no extra B12. Or treatment could be stopped completely (this has happened to many people).
Some people choose to get the test done privately and then only flag it to NHS medics if the results are outside the normal range. I know this sounds very sneaky and is far from ideal but it's a position forced on suffer's by the attitude and hostility displayed by many medics!
Do you know about having to take an appropriate amount of vitamins and minerals? Be aware that levels bumping along the bottom of the scale are no good for people with B12 deficiency (though your GP will think that they're okay).
Low levels inhibit or impede the absorption of B12. Again, if these levels are wrong you can have lots of B12 sloshing around in your blood - getting absolutely nowhere.
The main culprits to watch out for are are serum ferritin, potassium, magnesium, vitamin D, calcium and folate - can't recall more on this at the moment.
Oh dear...sorry for the long post...but hope some of it helps.
Post again and let us know how you're getting on.
Take care xx
Oh my goodness Foggyme, I do wish I had posted to this site late last year when I got my first blood test result showing a reading of 170. A lot of information you give is what I know already but good to have my reading of my situation clarified and reinforced - it has taken me since just before Christmas to get as far as that so you will understand how cross I am that I did not post before!
I thought that the wearing socks symptom (which seems to have almost disappeared for the most part) was a neurological symptom, but I have not seen it mentioned anywhere in the literature or on this site. All I seem to have seen are reports of tingling, pins and needles and numbness so I was not confident of my 'diagnosis'. The same with the icy cold feet which comes and goes and, given that my house is always rather cool, visitors often said that their feet were cold too so my cold feet were perfectly normal!
I will follow your advice about speaking to my GP, except that I will do it to the practice manager. My GP was reluctant to treat the neurological symptoms but did agree in the end after my insisting and giving all the reasons you list. But, after 'speaking with colleagues' she was forced to stop my every-other day injections. When I complained again she reinstated them but, after consulting the haematologist, she again stopped them. That is why I had two weeks loading doses (practice protocol) and then three further injections over the next couple of weeks! Strange but true!
I then asked to see a consultant neurologist but the referral was taking so long I went privately. He was hopeless - and still is - but at least I got a referral for a nerve conduction test out of him and a little more information such as confirmation that I had got some nerve damage to my feet ... but still an absolute refusal to follow the guidelines for continuing B12 injections until the symptoms had improved. I have accepted this for the present because, as I say, the ankle sock feeling has well nigh gone but I am determined to pursue the matter of the present practice protocol for treating B12D with nerve damage.
Your information will also be invaluable when I take up the matter of my mother's B12D with her practice as the protocol there is exactly the same as that of my surgery.
I was going to get the Active B12 privately and do as you suggested. I did not think the NHS provided the service and, in any case, my GP had not heard of it. I decided against it in the end for various reasons - which I can't recall now ('Could it be B12'!!)!. I think one of them was what you say in that it has its limitations too.
Finally Foggyme, the information you give about the various vitamins and minerals needed. That was going to be my next 'research' project. I understood that I might need folate and that there were other vitamins and minerals that I possibly should be taking. I was going to research and then ask my doctor for the various blood tests to check levels. She will be quite happy to do this I know as I asked her at Christmas time when I found I was B12D for tests for ferritin, folate and D3, which all turned out to be fine.
I always ask for my test results ... and read them avidly with the help of the internet. I also chase letters from consultants etc through their various secretaries who are almost 'friends' now. As you must know it is all very time consuming but at least I have my daughter to support me in everything medical - I call her my medical and legal secretary!
If you can remember anything more on the mineral and vitamin side I would be grateful as all information is welcome. Don't worry if not as I am sure you must have your hands full with your own issues - good luck BTW with your current problem.
You said you were sorry about the long post and I must return the apology for mine. I will keep you updated as things go along but I'm off to Versailles for three weeks very shortly and have a mountain of admin to get through before I go so don't expect too much for another month or so.
To end on a positive note I must say that today I am feeling more myself. Last week I had a cold which did not, for the first time in many years, turn into a chest infection. I have a severely impaired immune system due to rheumatoid arthritis, diabetes, hypothyroidism and now B12D and have recently been prescribed a background antibiotic which I take three times a week. I think it must be working!
The day before yesterday I took advantage of a burst of energy late in the afternoon but, as usual, I exitedly overdid it with cooking and sorting the freezer and ended up with a pain in my back every time I breathed in - something similar to the symptoms I had when I got pneumonia a couple of years ago. It was so severe yesterday that I had a telephone consultation with one of the surgery GPs followed by an appointment and thorough examination ... never rains but it pours. However, I am now taking an increased dose of Tramadol which seems to be working and I'm definitely having a good day so far - it began at 04.10 so I'm doing well - how good is that?
You take care too ..... onwards and upwards, eh?
Good news to report before I depart for VERSAILLES! I have received a copy letter from the haematologist following the consultation last week. It states 'vitamin B12 associated with peripheral neuropathy. Since starting the vitamin replacement therapy (currently every 2 months) (sic), the neurological symptoms have improved'. Which appears to confirm that all along this was my GP's diagnosis. She just did not tell me this or I would have insisted on the proper treatment rather than trying to get the neuropathy confirmed through various consultants and thus provide evidence to back up my demand.
What a shame that I have now had another injection before re-testing, after waiting so long since the last loading dose in January.
Any idea of how long it will take before my B12 will deplete again so that I can request another blood test - I know it varies widely so it may not be possible to say.
I think when I return from my holiday I will start pursuing the every-other day injections anyway because of the continuing problems with cold feet. There is no other reason for this condition - my diabetes is well controlled, etc, etc. We will see. In the meantime if anyone has any other advice please feel welcome to offer it!
Forgot to say - any info on additional vitamins and minerals required please?
No loading doses allowed 
Loading doses b12
B12 loading doses stopped
B12 loading doses feel terrible
Treatment post Loading doses
