Hello I'm in need of advice if possible I'm waiting for a call of a doctor anytime today as I've have been begging for someone to hear me out. I'm pretty new here but have learnt a lot in my short time here. I've suffered with psoriasis since my teens I'm now 52 over the years I've tried lots of treatment & meds and uvb treatment but no luck over time I've started getting bad migrains eye sight got worse breathing probs stiff joints and bone pain as well as really bad back probs and mood swings as I have gone to doctor separate times for these things I've been give many different medications that I have taken over the years and told I need to for life.This bit shocked me after my first 2weeks of 6 loading B12 I felt better than I have in years and didn't need any of my meds at all for any of my symptoms I explained this to my nurse when having my next 10week b12 yesterday she has arranged for a doctor to call me today and hear me out. But what I don't know is how often should I be getting b12 injections.
Sorry if i went on to much but I'm really stuck on this.
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Green4me
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Try to track down the local B12 deficiency guidelines for your ICB (Integrated Care Board or Health Board as your GP is likely to refer to these guidelines for treatment advice.
Some local B12 deficiency guidelines are unhelpful so I think it's useful to know what's in them.
"didn't need any of my meds at all for any of my symptoms I explained this to my nurse when having my next 10week b12 yesterday she has arranged for a doctor to call me today and hear me out"
May be worth explaining this in a short letter to GP as harder to ignore.
Link about writing letters to GP about B12 deficiency
I left some links on your other forum thread that might be useful.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books and films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Hi Cocoa Doctor listened to what I had to say told me to go for more blood test and checking b12 again said they may need to do another loading dose and talked about me seeing specialist who deals with psoriasis affecting organs but same as everything else there is a long waiting list. I'm sorry your daughter has Psoriasis too it's a tough thing to deal with for some. Mine affects me more inside than out at the moment inflammation it's affecting my breathing and sharp chest pain plus stiff painful joints and migrains for some reason my first load of b12 sorted it all, better than any meds I've ever had but sadly it didn't last long I felt like rug was pulled from under me over night☹️
Some people resort to treating themselves when NHS treatment is not enough for them. I see this as a last resort but I had to when NHS refused to treat me.
Some try high dose oral B12 although this doesn't work for some people. Some get extra B12 injections from private GPs or beauty salons. Some turn to injecting themselves.
It shouldn't be like this...people should be able to have the level of B12 treatment that keeps their symptoms from returning.
I suggest you keep a daily symptoms diary which tracks up to ten symptoms. Score severity of symptoms each day. Note dates when treatment is received and how much. Can be useful evidence of improvement or deterioration in symptoms to show doctors.
If daily is too much then maybe a weekly diary.
If your symptoms return, get worse before the next injection is due, that suggests you probably need injections more frequently.
There are moves across UK to put more patients onto high dose oral tablets as an alternative to injections so watch out for this in your local area. Although it works for some, many forum members report it doesn't work for them.
Petition
There is a petition to get injectable B12 available over the counter in UK
You mentioned on your other thread symptoms that would usually be considered as neurological.
Have you pointed out to your GP ( maybe in a letter?) that BNF suggests that people with neuro symptoms should have a B12 loading injection every other day for as long as their symptoms continue to improve.
This could mean weeks even months of loading injections.
After improvement stops then it's maintenance injections every 2 months for those with neuro symptoms. Every 2 months is more often than every 10 weeks.
Perhaps next time your with your GP, ask them to look in their BNF book at Chapter 9 Section 1 sub section 2 or take a copy of BNF info in link below with you.
As a teenager I was covered from head to feet with psoriasis, it really flared up after bouts of tonsillitis/strep throat which was a frequent occurance. 30 years ago I had a my tonsils removed, the psoriasis completely disappeared and has never bothered me since. Take a look at this link:
I had massive tonsils when young - they fascinated my GP. He was against tonsilectomy, so did not get tonsils removed until I was 20. I had tonsilitis off and on throughout childhood and teens.
I had psoriasis after removal - mainly just scalp, elbows, knees. My mum and one of my sisters had more severe psoriasis. Mum also had vitiligo -which started from a childhood vaccination site on upper arm.
Autoimmune conditions such as vitiligo, psoriasis, Hashimoto or Grave's disease (prevalent in my family) are quite common companions to pernicious anaemia. It is not uncommon for those with PA to have one or more other autoimmune conditions and there are over 100 of them.
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