Firstly, I haven't been diagnosed with Pernicious Anaemia, but I am low on B12 and due to start my injections tomorrow (6 over two weeks then every 3 months thereafter). My B12 is currently sitting at 211 and Folate at 12.
Prior to this I had been supplementing iron for low Ferritin (was at 13 and a few months later raised to 46).
I'm interested to know if anyone else has experienced nerve discomfort at similar levels? Yesterday I discovered that I cant curl my toes/feet very well anymore and I have very brisk reflexes in my right leg. GP has also referred me to Neurology.
Written by
Angie8712
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Sorry for such a short reply but I'm about to go out.
"(6 over two weeks then every 3 months thereafter)"
The above is a UK pattern of treatment for B12 deficiency where there are no neurological symptoms.
If you have neurological symptoms and you're in UK then my understanding is that you should be on the pattern for those with "neurological involvement" in BNF link below which is
a B12 loading injection every other day for as long as symptoms continue to improve then an injection every 2 months.
There is no set time limit as to how long the every other day loading injections can continue for, for those with neuro symptoms. Could be weeks, even months of them.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
Some health professionals have misconceptions (wrong ideas) about B12 deficiency.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Links to forum threads where I left very detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books,B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
I suggest you read about B12 deficiency prior to the neuro appointment .
There is a lot of ignorance about b12 deficiency among GPs/specialists and other health professionals. It pays to do a bit of B12 homework in case you get a doctor who hasn't done theirs.
More about the wrong ideas health professionals can have about B12 deficiency
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
I'm not medically trained just someone who suffered for many years from unrecognised and untreated B12 deficiency. I want people to have the info they need to fight ignorance about B12 deficiency.
One thing I would urge you to do is to track down the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board and compare the info with BNF, BSH and NICE CKS links in my replies.
Your GP/specialist is likely to refer to the local guidelines when diagnosing and treating you.
Read the blog post below if you want to know why I urge UK forum members to do this.
To find local B12 deficiency guidelines, try a search of forum posts, an online search or submit a FOI (Freedom of Information) request to your ICB website or Health Board website asking for a link to or copy of local B12 deficiency guidelines.
CCGs (Clinical Commissioning Board) were replaced by ICBs (Integrated Care Boards) in England on July 1st 2022. It's likely that ICBs will take on the clinical guidelines of the CCGs they replaced.
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.
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