know where i am in folate previous test have been normal 12 months ago which ive learn't means very little
loading dose (taking folic acid 400 mcg with it today )of two weeks of 6 injections my level was 145 ng/L range of
130-800 my GP is treating me by
my symptoms :problems with short term memory waking up with pins needles in hands at night sometimes
sensations (very slight )numb in part of big toe and feet which has become noticable i can sometimes miss read meanings of words have recently noticed tinnitus hissing in ears in a quiet place and night in bed.
I have been advised by members on the forum that may need more than 6 injections what would anyone suggest please can anyone explain do these qualify as major symptoms and should i be pushing for example another 3 injections for a third week? As obviously want best result but there are even many other views from professionals that explain weekly injections given for 3 months then monthy for a year .It can become quite confusing as to the best treatment with many views i would be grateful for some clarification on
these different ideas.
to help me understand better.
also could use sublingual between loading injection althouth on the pinned homepage have seen that
trials with sublingual may not be so good anyone had good experience
with sublinguals?
thanks
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Advice1
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page 8 of the "BCSH Cobalamin and Folate Guidelines" outlines UK b12 treatment.
page 29 of same document outlines recommended process GPs should follow with someone they think has b12 deficiency.
Have you had an IFA (intrinsic Factor Antibody ) test which can help to diagnose PA (Pernicious Anaemia)? This test is not always reliable and it is possible to have PA even if the IFA test comes back negative.
My understanding of UK treatment is that those with b12 deficiency with neuro symptoms should get loading injections every 2 days for as long as the symptoms continue to get better and then injections every 2 months.
B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
"Could it Be b12" by Sally Pacholok and JJ. Stuart
I am not a medic jsut a person who has struggled to get a diagnosis.
I am in the UK ,thanks for all the information you have kindly provided
BCSH Cobalamin and Folate Guidelines much appreciated.
I was tested in May and Aug 2015 by GP who explained Ferritin was fine
and Folate was in good Range although the B12 was 155 ng/L (114 pmol)
So because of Border line explained it can take years for B12 to go even lower
so wanted me to agree to another test 1 year later, i sort of understand his reasoning
but 1 yr later its lower at 145 ng/L (107 pmol) Probably would of been of benefit
at the time to do IFA (intrinsic Factor Antibody ) test.As i was not on any B12 supplements. I understand the numbers dont really mean much more so symptoms
from what i have read from Guidelines.
So where i am now is visited another GP he saw FBC which stated
""Just in Normal"" so agreed,after seeing my letter, explaining the BCSH Guidelines and my wanting the Loading Doses ,yes he was happy to give 6 Injections over
2 week period.(but did not offer to investigate further with IFA test which could of been helpful.
My symptoms DO not include....
Fog
Irritability
Tiredness,i walk alot full of energy.
impatient: as i am a very patient person some say too patient!
My Symptoms DO include.....(which i have noticed since 2012)
1.Bit slower. my wife says. eg Emails making errors thinking and saying wrong words when i mean something else.
2.Short term memory problems ...Passwords, where i recently put something etc.
3.Pins and needles in hands at night (waking up with this) 2-3 times a week.
4.Miss reading words and sometimes seeing a word but seeing it but substituting as another,then
go back and see its not the word i thought it was after re-reading.
5a.Tinnitus gradually getting worse (hissing in ears at night)
5b, Right Big toe on inside seems to be a little numb to touch
6.Was having 7 migraine Auras (no headache) a month but they stopped since taking
Magnesium Bisglycinate(but family history)*so may not be relevant.
So not as many symptoms as in the Guidelines shows .
My mother who was diagnosed wit PA very late in life has most of the symptoms in the Guidelines except the tongue problem.
So i dont know if i should contact the GP to get an extension of the loading dose?
It does appear to be B12 is my problem but the most important thing is to get this all right from the start with the dosing.Maybe i am not needing over the 6 injections as i am just moving towards PA .and the 2 month injection will be enough.
Just wondering what you and others on the forum may think on this.
Just realised i made a mistake in reply meant to say my where i am at now another GP saw my B12 result Just in normal but in regards to the FBC it was normal only B12 was issue after the GP saw it and i analysed it with my copy .
Hello Advice1. the confusion might arise because different countries have different regimes for treating with B12 injections.
It sounds as if you have neurological symptoms so if you live in the UK, the regime for B12 deficiency with neuro symptoms is as follows:
6 x loading doses 1mh Hydroxocobalamin given every other day then 1mg Hydroxocobalamin every other day, until no further improvement. Once you reach this stage, you should then be prescribed 1mg Hydroxocobalamin every eight weeks. Your GP may not know this.
The information is contained in the British National Formulary (BNF) - your GP will have a copy on the desk and can look it up. It's the second item down so they'll probably have to read further than usual to see it!
Your GP may check your B12 levels three weeks into treatment - this is to check if your levels are still too low. The level should be high, due to the injections, and your GP should not stop your injections because of this. Many do, and it's wrong. Treatment should be based on symptoms, not blood results, and the neurological regime (as above) should be followed irrespective of high serum B12 levels.
As I've said, this regime applies in the UK so if you live elsewhere the guidelines may be different.
Not sure about the sublingual as I don't use them. Some people use them for a top-up between injections for a quick boost and I understand that they work for some people, but not for others. It's an individual 'thing'. In terms of long term treatment for B12 deficiency / PA, injections are the best and most effective option.
Please do ask any more question or post again for advice if your GP is reluctant to treat you as per the guidelines.
If you check the PAS pinned posts to the right of the forum home page, you'll find details about all the UK guidelines. Some like to print them off and take along to their GP's, especially where there is a reluctance to prescribe B12 (unfortunately this happens far too often).
I learnt from experience that what I was told was fine/normal face to face or over the phone was not always fine/normal when I got a paper copy (some surgeries now have online access to test results).
Some of the symptoms you describe can be found on lists of b12 deficiency symptoms under neurological symptoms eg tinnitus, pins and needles, numbness, memory problems, word finding difficulties.
Some people on the forum join the PAS (Pernicious Anaemia Society). They are helpful and sympathetic and a good source of info. Members can access details of local groups.
"So I dont know if I should contact the GP to get an extension of the loading dose?"
Untreated or inadequately treated b12 deficiency can result in permanent neurological damage. Some people develop "sub acute degeneration of the spinal cord".
I had multiple typical neuro symptoms of b12 deficiency but had no luck getting NHS treatment other than one set of loading doses and resorted to self treatment in end. I believe I would have gone on to develop dementia type symptoms and maybe spinal problems. Correct treatment is worth fighting for because the alternative is not pleasant, pernicious means deadly.
So where i am now is visited another GP he saw FBC which stated""Just in Normal""
Did you see the FBC results? There can be useful clues on FBC.
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