I was diagnosed with PA two years ago, and after the loading doses was put onto a 3 monthly injection cycle. In the past 5-6 months I’ve had 3 bouts of horrible dizzy spells that at times have meant I didn’t feel safe to drive and struggled to look after my kids. I asked the GP for a blood test for b12 and she did it and said my levels were fine. Upon reading this forum however, it seems that those blood tests aren’t necessarily accurate.
Could this be a PA symptom and could it mean my jabs need increasing? Not sure how I’d even convince my GP to consider this to be honest but I thought posting on here would help as you are likely to understand my worries.
Thanks.
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Amymyla87
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Some links I post may have details that could be upsetting to read so you may want to have someone supportive to read through the info with you.
Other Deficiencies
Have you got recent results for folate, iron and Vitamin D. Forum members often report deficiencies in these as well as B12.
Thyroid
It's also quite common for forum members here to report thyroid problems.
Thyroid UK forum on HU is a good place to ask questions.
Neurological Symptoms
Dizzy spells are usually considered a neurological symptom.
The BNF (British National Formulary) is a book that contains guidance on treatment for UK doctors.
If GPs look in Chapter 9 Section 1.2 they will see that the recommended pattern of maintenance injections for B12 deficiency is
every 2 months for people with neuro symptoms
every 2 - 3 months for people without neuro symptoms
How many loading injections did you get at the start of treatment?
BNF suggests 6 loading injections of hydroxycobalamin over two weeks for those without neuro symptoms.
For those with neuro symptoms, it's a loading injection every other day for as long as symptoms continue to get better. This could mean weeks even months of every other day loading injections.
Did you have any neuro symptoms before B12 treatment started eg tingling, pins and needles, involuntary movements eg jerks/twitches/tremors, migraine, memory problems, balance problems, clumsiness etc?
If you have time and energy, might be worth searching for and reading these documents.
They are aimed at health professionals and explain treatment patterns and diagnostic process.
1) "NICE guidelines B12 deficiency" - published 2024.
3) Try to find the local b12 deficiency guidelines used by your ICB (England) or Health Board (Wales/Scotland).
If can't find local B12 deficiency guideline online, best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of it.
Consequences
Delayed or inadequate treatment can increase the risk of developing neurological damage.
I've left other useful links in my reply to Miler1969 . See thread below.
I can post links to some threads where I left very detailed replies with useful links for UK people struggling to get adequate treatment and a list of helpful info for GPs.
My dizziness didn't stop until I took B12 more often (SI sub-cutaneously) and haem iron (orally after a ferritin infusion) supervised by a haematologist (private), to raise my iron levels. In relation to the standard blood test scale I was not classified as anaemic but I still had the symptoms. The ferritin level is a reliable indicator of iron deficiency. With PA I aim for a ferritin level of around 100.
I suspect the blood tests were reasonably accurate, unfortunately your Doctor's interpretation of the results was suspect. NICE recommend against testing b12 serum levels if b12 is being injected. The standard range for b12 is not appropriate for assessing b12 deficiency treatment. Successful treatment is generally associated with serum levels well in excess of the standard range. The appropriate metric for judging the success of the treatment is the ongoing control and improvement in symptoms.
Not saying that it couldn't be B12 but it seems rather strange that it has come on after a year of being okay, which suggest that there may be something else going on.
Thanks for your replies everyone. A lot of useful information.
Orchard33 I often have a low ferritin result. It was 19 when I had the dizziest periods a few months ago and I am taking iron as a result. It has gone up to 42 now but I’m still taking the supplement.
Gambit62 The GP said it was BPPV - vertigo. Particularly as it’s worse when lying down/moving my head in various positions but I also get a residual dizziness with it. Maybe I should go back and discuss it further.
Re the vertigo, what was your folate originally and have you been supplementing? If so, with what? I found that my vertigo resolved with a moderate dose of methylfolate, which made me wonder. Doesn't mean it is the cause for you of course, but it could have dropped if you weren't supplementing while on the B12 or perhaps are on folic and it doesn't suit you. Best wishes
Yes, you probably need more frequent injections. You have clear neurological symptoms and a clear PA diagnosis. Go back to your doctor and try and persuade them to let you self inject as and when you need. If they aren't persuaded, do it anyway. Do make sure you are getting good co-factors. All the vitamin Bs, D, DHA omega 3 fatty acids and minerals zinc, magnesium, potassium and calcium in balance. So eat oily fish, green leafy veg and nuts.
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.
Newly diagnosed with PA help please
HELP desperately needed….. 🤒
Help needed 
PA test after loading doses...Help?
