Hi. Long story short, I have serum b12 within 'normal' UK range but increasing neurological symptoms. My mum has PA. I take oral b Complex daily and have done for years, and have just been told this will skew all blood test results relating to B12 (MMA, homocysteine etc).
GP has agreed to refer me to a neurologist. But is there any way for the neurologist to confirm it's b12 deficiency (given that they are not a B12 specialist)? Taking more blood tests is obviously pointless.
Getting new symptoms daily and I am v anxious to get treatment.
Hope you can help.
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MrsShoe
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The oral supplements will only skew the blood tests if you do not have PA.
If you do have PA then you will not absorb the oral B12 and your levels will be unaffected.
If you can absorb the oral B12 then it will raise your B12 levels - which is what they're supposed to do.
The neurologist should be able to get a very good idea as to what causes your neurological problems. The local neurologist I saw knew enough to say that B12d or diabetes were highly unlikely to be the cause of my problems, so he referred me to a London specialist at the Hospital for Neurology and Neurosurgery.
He was excellent. He took a full history, loads of blood tests, lots of prodding, some hopping (which almost resulted in me crushing two students as I lost balance), nerve conduction studies and electromyography.
He wasn't at all fussed when I told him I was self-injecting once a week and had to explain to one student that high B12 cannot cause neuropathy - but B6 can.
I was there for a couple of hours. At the end of which he declared that I had Idiopathic Axonal Neuropathy which is, he said, very common in tall men in their late 50s. "Wow!" I said. "I'm very tall and I'm 59".
He explained what would happen to me and arranged an appointment for 9 months later. Everything he predicted about the progression was correct. He did another examination with more nerve conduction tests, found little change and told me that he didn't think we needed to see each other again. My problem will never go away and will deteriorate very slowly. It's been three years since then and he's right.
I would hope that, if the tests show that a B12d is a possible cause, (s)he will recommend that your GP start you on a course of B12 injections, as recommended by the BNF, and they wait six months to see if there's any improvement. If there is then you stay on the jabs for life.
Point 1 in letters link is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.
Neurological Consequences of B12 Deficiency
It's vital to get adequate treatment if you have B12 deficiency ( from whatever cause). There is a risk of permanent neurological damage if B12 deficiency is untreated or under treated.
I've written many other long replies on the forum which may be worth searching for.
"I have serum b12 within 'normal' UK range"
I had years of multiple typical symptoms of b12 deficiency with many neurological problems , had many misdiagnoses eg ME/CFS, Fibromyalgia , Hypochondria and years of deterioration.
All except one of my serum B12 results was well within range, most were between 300 - 500 ng/L.
GPs and specialists I saw would not consider B12 deficiency as a possibility even though I asked them to try B12 and pointed out I had typical symptoms and some blood results that were suggestive of B12 deficiency.
I resorted to treating myself when I had exhausted all chances of NHS B12 treatment but for me this was an absolute last resort when I realised I was headed for dementia and spinal damage if I didn't get treatment.
These days I have a life I can enjoy but suspect I have some permanent damage due to length of time ( many years) without diagnosis or treatment.
I have low B12 but after testing negative for PA one doctor passed it off as a dietary issue (I personally don’t think I shouldn’t be lacking in B12 based on my diet!), another doctor referred me to a neurologist but my appointment isn’t until December! They did give me a 2 week loading dose of injections but switched me to tablets and I’m not feeling much better! So I’m pretty much in a permanent state of anxiety, which I’m pretty sure makes my symptoms worse! So you’re not alone MrsShoe ☝️
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