I went to the doctor about 3 months ago with a number of symptoms. They'd all just been adding up and I was convinced there had to be something going on. I was almost relieved at first when I was told there was in fact a possible cause for it all, B12 deficiency...
I had some blood tests and was initially very impressed by the variety of tests the GP ordered. Came back with low B12 (162) and so this was investigated further with a follow up B12 (170), and other tests to determine the likely cause including coeliacs, intrinsic factor, MMA, homocysteine, etc. (I've never been vegan or vegetarian so thats ruled out straight away.)
This time nothing positive to indicate the cause, although I understand the pernicious anaemia assay can give false negatives. Nevertheless I was given the standard loading doses of hydroxocobalamin at 1mg/ml 3 times a week for 2 weeks. Initially I didn't notice much difference, but about a week afterwards I felt back to my old self and amazing!
The annoying thing is that the effects only lasted for about 2-3 weeks, at which point I crashed and felt like I had gone back to square one again with extreme tiredness, agitation and negative mental mood.
I've seen a few GPs at my practice now and the answer I keep getting is that the BNF advise repeat injection frequency of every 2-3 months which they refuse to budge on, regardless of my symptoms returning in full!
I've read quite a few people saying they have their injections more frequently. So my question is have you managed to get this approved by your GP somehow? I've also learnt that self-dosing seems to be what a lot of people are doing in this situation, but being new to this I feel like I want to keep trying with the doctor for a while longer.
Another question I have is are there other people out there who have B12 deficiency but don't know the cause?
I've found reading other posts really helpful so far and to know there are so many other people in this situation. Its all new to me so any thoughts or advice will be greatly appreciated! Thanks all!
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Jenniventuri
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There are a lot of people on here who supplement the B12 shots from their GP with self-injecting. I'm sure most of us would prefer to get the B12 on prescription, but - with a few exceptions - it seems that GPs will only allow B12 every two or three months. You could try giving your GP lots of information about B12 deficiency to see if that helps. If you don't get any joy from the surgery, self-injecting isn't difficult and lots of us have found it a life saver!
And there are lots of people who don't know why they're B12 deficient, though the poor accuracy rate for the blood tests for PA doesn't help!
It's good that you found the loading dose of B12 helpful - now you need to concentrate on getting more in to your system
I buy mine from Amazon.de. I use my English Amazon login details for the German site, and it works just fine. Postage is a little pricey, but if you order in bulk, it's not so bad. I think other people have used Goldpharma too.
We can buy the syringes and needles legally here in the UK and they're really cheap. You'll need green and blue needles for drawing up and then injecting. I got my last lot from Amazon UK, but I noticed the other day that the needles weren't coming up, so maybe their policy has changed.
An ampoule of B12 and the syringe and needle etc will cost under £1, and once you have learned how to do it, it's not hard. If you decide to go that route, make sure your folate levels are good too, as you need both in your system for optimal benefit. I also take a bogstandard multivitamin and top up my rubbish iron levels, and I generally feel pretty good these days!
Hi Jenniventuri I too have struggled against a "one size fits all" doctor who wouldn't budge. I'd had P.A for nearly 40 years and had for a long time noticed the return of neurological symptoms in the run up to my next injection so in 2010 I joined the the Pernicious Anaemia Society and asked the same question you are asking, discovered I was not the only person in the world and learned all I could.
I do now have more frequent injections.
You could try quoting the BSH guidelines which say "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
thanks clivealive, I'll take a look at both. I did have my folate levels checked just after my 6 loading doses, results were:
Serum folate 5.5 ug/L (3.9 - 25.0)
Serum vit B12 level >2000 ng/L (197 - 771)
My GP is refusing to believe that my symptoms have returned when B12 level is so high, but this was right after and I'm now 5 weeks on. I have also read in many places that re-testing after loading dose is relatively pointless!
That is correct about testing unless the result comes back LOW.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your level at 5.5 ug/L (3.9 - 25.0) is at the bottom end of the range.
Personally I have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember and it can be obtained cheaply over the counter of any pharmacy or supermarket.
you just have t keep keeping on! It has taken me a year of fussing and going back and back to my gp to finally have arrived at two weekly injections. I am really back to my old self and connot believe I had to wail and wave sheets of notes at them to get my way in the end.. The gp swore until she was blue in the face that they NEVER have injections more frequently than three months.... I have now shown this just was not true. hang in there Jenniventuri
I am newly diagnosed (B12 141) and it has taken me over 10years to get this far. I was elated yesterday to learn that I can now start a course of 5 loading doses, but after that the Gloucestershire protocol offers nothing at all! Despite now having neuro symptoms, because my IF was negative, I will then have to wait 6-12months for a B12 review, according to GRHNHSFT policy. Will I even be alive by then!!?? I have asked for a parietal cell test but this may be refused by the lab on account of the expense! No investigations to find out the cause are being offered at present. This is what we are up against in Gloucestershire. All of that said, my GP has been really good at listening so far, and she is the one who has helped me to finally get a B12 deficient diagnosis, so I love her!!!! She is definitely my best hope going forward.
For anyone else in Gloucestershire who may not yet be a member, the PAS is the most wonderful resource and the leader of the local group is an incredible source of help and freely given advice, so I highly recommend.
jillc39, may I ask what county/trust you come under? And how did you convince your GP to give you two weekly injections? Is that ongoing? Well done you, that is an incredible result!!! 😃👍😃
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