Hi I’m 53 a single mum of a 16 yr old and also a self employed gardener. I’m in the middle of a 2 week course of b12 injections from my doctor.
Iv been feeling ill for quite a few month but carries on pushing myself until in the end I had to go for blood tests as I was shaking and energy levels were zero aswell as I have had hair thinning dry skin and a touch of depression which I had put all of these signs down to losing my mum a couple of years ago . Apparently I am dangerously low of b12 .
What happens now ??
Kerry x
Written by
Kaw142
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It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
It is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.
Both iron and folate may be needed so please have these levels checked by your doctor.
I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.
Thank you for so much for your advice . I’m pretty scared at the moment as feel totally lost and wiped out. I feel that my speech is slurring but friends have said I sound ok just look spaced out. Another injection tomorrow , half way mark xx thank you I’m glad I joined this group
My levels must have been near enough zero when I eventually got my P.A. diagnosis in 1972, 13 years after the removal of two thirds of my stomach in 1959 at the age of17.
Then aged 31 with two daughters under six and with a wife with heart problems my doctor gave me two years to live unless I ate raw liver three times a day or had B12 injections for the rest of my life.
I'm still "clivealive" now 77 years old and due my next injection next Monday
Clive's reply is pretty comprehensive, but I just wanted to say hello, and welcome, and that there is loads of good advice on here. I'm also the single mum of a sixteen year old (with an extra two as well :)) and low B12 is just utterly rubbish when life is so busy, so hugs to you.
Have the loading jabs and see how you feel. And don't forget that if it's not enough, self-injection might be an option. Now you're diagnosed, at least you can start treating it and getting yourself feeling human again x
Thank you you’ve made me feel that I’m not alone in all of this. It’s very scary as I struggle daily at the mo. Fuzzy head and my decision making is awful. My doc didn’t say much after my blood results except that my b12 didn’t really exist in my body so I much be very low xx will keep you posted and thank you once again xxx
Welcome to the forum and so glad your GP has started you on treatment. Just to add that with such low B12, loading doses may not be sufficient, especially as you have an active job . I hope these links will explain clearly why adequate treatment and not relying on blood levels alone to measure continued treatment is so important initially:
The latest BMJ research document summary below, (full document behind a paywall) states that there is no reliable test and, (bottom of page 4 ' under, 'How is Response to treatment assessed'), once treatment is given, blood levels will inevitably increase but it is the clinical condition of the patient that is important:
"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."
More B12 info in pinned posts including useful summary of B12 documents.
B12 books I found useful
"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 is up to date with UK b12 guidelines.
"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.
PA
Have you been tested for PA (Pernicious Anaemia)?
In UK, people with suspected PA are usually given an Intrinsic Factor Antibody (IFA) test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.
Flowchart link above outlines when PA or Antibody Negative PA can be diagnosed in UK.
PAS (Pernicious Anaemia Society)
If PA is suspected may eb worth joining and talking to PAS.
Can lead to B12 deficiency due to effect on gut. In UK, NICE guidelines on Coeliac disease recommend that anyone with unexplained B12, folate , iron deficiencies should be tested for Coeliac disease.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.
Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, tremors, memory problems, balance issues plus other possible neuro symptoms? See B12 deficiency symptoms lists.
If yes to neuro symptoms
1) Has your GP contacted a haematologist? Or have you been referred to a haematologist?
NICE CKS link above recommends GP should contact a haematologist for patients with
2) Have you been referred to a neurologist? It's important to exclude other possibilties for neuro symptoms.
3) "in the middle of a 2 week course of b12 injections"
UK b12 treatment for b12 deficiency without neuro symptoms is .....
6 B12 loading jabs over 2 weeks followed by a jab every 3 months
I suspect GP is using the above pattern of treatment.
UK B12 treatment for b12 deficiency WITH neuro symptoms is .....
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
A lot of UK forum members struggle to get adequate B12 treatment.
There is a window of opportunity to put things right with treatment before there is a risk of permanent neuro damage so it's worth fighting for correct level of treatment.
Many forum members report difficult experiences with GPs. B12 deficiency is not always as well-understood as it could be by GPs and specialists. My advice is to be well-prepared for any appointments. Some people take someone supportive with them to appts. Even better if person taken has read up about b12.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Make sense of my results 
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