Hi everyone. I posted a couple of months ago about being hit with a barrage of neurological issues: muscles shaking/ tremors, twitching etc. These all started after a course of 6 injections after finding my b12 levels were under 150 (although no idea how far under 150!). GP has been great (although he has no idea about b12!). He rings me every week to see how I’m doing. I’ve spoken to a neurologist who is going to do a nerve conduction test and ordered an MRI. He’s also asked for me to be referred to a haematologist to try to sort out the b12 issue (he said to be fair to my gp there is loads of conflicting advice about b12 so isn’t surprised he doesn’t know what to do!).
He also did another blood test to see what my b12 levels are. As my 6 injection finished at the beginning of October, the nurse who did the test said, I bet your levels will be over 1000. However, the GP called yesterday and said they were 550ng/l. I wondered what everyone thought about this? I know it’s normal but I feel it’s low despite the injections.
Thanks everyone!
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Mayfly999
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The result is normal for someone who hasn't had injections - but given that patients who are on injections on average say that they need to maintain levels of 1000 that does put the result in a different context.How long after an injection were the results taken? Sounds like it was a month or two after the injections.
There is a huge amount of variation in how long people retain B12 for - the average for hydroxocobalamin is 2 months but in some patients it was retained for up to 4 years in the earlier studies - and for some it was retained for much less than 2 months. Unfortunately these studies just evaluated the serum B12 levels and didn't look at symptoms.
It does sound though as if you are likely to need more frequent injections.
Serum B12 is a difficult test to interpret as a single point test in a patient who hasn't had injections - its nigh on impossible in someone who has meaning that its better to go by symptoms.
Your GP might find this area of the PAS website specifically aimed at medical professionals and helping them improve the diagnosis and treatment of PA (and in the case of treatment people with other B12 absorption problems)
What are your folate and ferritin (or other iron tests) levels like now?
"posted a couple of months ago about being hit with a barrage of neurological issues: muscles shaking/ tremors, twitching etc. These all started after a course of 6 injections"
Did your GP check your potassium levels when these symptoms started?
There is sometimes a drop in potassium when b12 treatment starts.
If you have neurological symptoms then the recommended pattern of treatment in UK is
A B12 loading injection every other day for as long as symptoms continue to improve then an injection every 2 months. See BNF link above and read section on treatment for those with neurological involvement.
There is no set time limit on how long every other day loading jabs can continue, could be weeks even months.
You mention only 6 loading injections so I'm wondering if you were on the most appropriate treatment pattern.
For those without neuro symptoms, the recommended pattern is
6 loading injections over 2 weeks followed by a jab every 2 - 3 months.
More B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.
If your gp is as open minded and trying to help as it sounds as though they are. A weekly phone call is amazing you should get back to bnf guidelines which your gp will have abd every other day continued until no further improvement
My reading was under 15o tok 106pg/l
Even with that that there is a 2o% margin up or down.
I went back on every other day . Saw a neurologist had a brain mri .
I did get worses before improvements.
So with all the advice from above discuss with your gp
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Serum ferritin too high?
About German online Pharmacies. — If they follow pharmaceutical rules rules,they are not allowed to supply U.K. with B12 ampoules! 
Silent Reflux and B12 Deficiency- Any Link?
Bit of a success with frequency of B12 injections 
