So my intrinsic factor antibodies test came back 'negative' and so GP said we therefore don't need to worry about PA, we can rule that out. Knowing what I know now, I think he is incorrect going by what is on the guidelines from the British Haematology and NICE. Also I noticed my Folate level was greater than 20ug/l does anyone know why, is it linked. I now feel in a worse position than ever to get the right diagnosis and treatment, I have pins and needles increasingly and worry about my appointment with the neurologist, is he actually going to be clued up about Vit B12 deficiency or is this going to lead to a misdiagnosis and unnecessary tests. If the doctors agree its only a Vit B12 deficiency and not PA how do they explain why I am deficient in Vit b12 and Iron, I eat meat every day and dairy products, in fact I eat a lot of meat? What are other causes of B12 defiency.
This is my current results
My Ferritin was 8ug/l reference (10.0-300).
Serum B12 156ug/l then a week later 214ug/l
Serum Folate
>20ug/l
Symptoms
Unexplained weight loss 1.5st lost in around a year
Pins & needles, which referred to neurologist in May, appointment in Jan 2018
Mood Swings and Irratibility and Depression
Hip Pain
Fatigue
Mouth Ulcers
Dry Mouth
Recurrent Respiratory Infections
I have taken Iron Tablets for years and its gone down not up. Should I wait until the 18th Jan for Neurology or book a private GP appointment? Is others experience of neurology lead to the right help?
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lc24
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I saw a neuro as I have pins and needles. He recommended pregabalin (which i haven't took). Was fed up with GPs so got a private referral to a haematologist - only Dr who didn't look at me like I was talking a foreign language. Agreed B12 problem could be the root of my symptoms and suggested a trial of B12. This was back in July. I see him again in Dec on the NHS. I've had no experience of private GP but seeing as GPs tend to be where I find most resistance, I'd save your money on that and get to see a good haematologist privately - look for one that states B12 or pernicious anemia as an interest of theirs if you can.
I made sure I got one of the nurse practitioners who I know to be a little weak on decisions! That said, I am fairly sure any if the Drs would have been fine referring me if I'd said I am willing to pay. Best 180 quid I've ever spent. Was refreshing to have someone take me seriously. That said, I've seen others on here have not been as successful with their haematologist so it could be luck of the draw. Hope you get it sorted
One other thing... have a read of the haematologist profile on Nuffield page as some consultants can be seen without referral.
My neurologists have been very clued-up on B12 and its role in peripheral neuropathy. They both knew that a negative anti-IF test doesn't mean you don't have PA. it didn't really help though, my PN isn't anything to do with B12. But they did halo a lot with advice on how to minimise the pain (gabapentin with the odd cocodamol when it gets really spiky).
Your GP needs to understand that your antibody test doesn't rule out PA.
If you don't mind me asking how do they know your pins and needles aren't to do with your B12? Is it because you still have them despite treatment? fbirder
It was the timing, more than anything, that made him suspect it wasn't B12.
When I was first diagnosed with PA I had a very slight numbness in my big toes. That got steadily worse and worse over the following year, which is not what you would expect when the B12 deficiency was being properly treated (fortnightly injections).
When the London specialist completed all his tests he said that the nerve conduction results weren't right for B12 either.
He reckons I have Idiopathic Axonal Neuropathy. He described how that would progress (a very, very slow deterioration) and, one year later, he has been proved correct. The severity and extent has remained fairly constant.
Apparently it's common in tall people in their late 50s. As I'm 195 cm and aged 60 I do seem to fit the pattern.
other possible causes of B12 are: coeliacs, crohns, low stomach acidity, SIBO, h pylori infection, various drug interactions, tapeworm infection ... and I've probably missed half a dozen.
as fbirder says you need to draw your GPs attention to the limitations of the PA test - it gives false negatives 40-60% of the time depending on the assay method so a negative is a long way from ruling out PA.
This is explained in the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies which your GP can access through the BNF but can also be found here
you could try printing out and highlighting the relevant section and sending it to your GP
The Neurologist I saw was very dismissive and said that my balance problems and neuropathy were my age (70). Didn't think B12 would do me any harm but not very positive and GPs convinced it wasn't B12.
I had tingling in my fingertips and toes for over 15 years and saw 4 different neurologists during the last 13 years. They all tried to help me with traditional autoimmune medications for MS, but none of them took my symptoms away. My symptoms got worse and worse. Last year, the tingling, numbness, and pins and needles were shooting all the way up to my shoulders from my fingertips. My toes turned from pins and needles to almost completely numb. The craziest thing is that within the first couple of days of being off of gluten (completely) the pins and needles started to subside. Now I've been gluten free for a year and all my symptoms are gone. You should try it. There's nothing to loose, but possibly your symptoms!
Hi Deedle88 I already have been gluten free for 2 years now. I eliminated after I had no luck with my deficiency's and wondered whether it was due to being gluten intolerant, I had the test for Coeliac and it came back negative but I heard about the test not being reliable and that you can also have non-coeliac gluten intolerance, so tried to eliminate it. It hasn't had any effect on my nutritional deficiency's other than feeling less bloated. I have stuck to a gluten free diet purely for feeling less bloated and less tummy problems. Thanks anyway
I read this article last week, I too have found cutting out gluten helpful but have tested not positive for celiac. I’m now wondering if it could be a fructan intolerance newscientist.com/article/21...
Yay Ic24, it was the title of your post that caught my eye. I had similar symptoms to yours for two years and after an MRI scan I was diagnosed with a prolapsed disc at the base of my skull which I have been told is the cause of the pins and needles and numbness in both hands and feet! I appreciate your thoughts are more PA and B12 etc. based so this maybe of no use to you but it was just a thought.
I just hope the neurologist takes me more seriously then my GP's. How did they treat your prolapsed disc Xene ? I hope I can get some answers soon. Thank you I have put so much hope on this neurology appointment for some answers, I just hope the 9 month wait to see the neurologist is worth the time.
Yay Ic24, I was only diagnosed last year and at that time I was told by the neurologist that the risks of a spinal decompression operation far outweighed the benefits! Now it's all change, wanting me to see a neurosurgeon? So I'm giving it a lot of thought before I let anyone mess with my spine!
Purely based on my own past experiences with the health profession, sometimes you have to fight them all the way whether a gp or consultant even if it means a second opinion! I know it's not always easy getting the correct diagnosis and treatment whatever it may or may not be and I wish you luck.
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