Hi All. Hope i don't go on to much. For a number of years i have had a lot of the symptoms that are connected with a vit b12 deficiency .After reading all the forums I finally asked my GP for a blood test. I rang today and spoke to him and asked what my levels were, her said the are in normal range of 230? I then went on explaining how exhausted , brain foggy, aches pains etc.. plus i have been on antidepressants for many years for these symptoms may i add! I practically begged him for a therapeutic dose to see if i would feel any better, but his reply was a very firm NO, as it is line with the NHS guidelines . However he did say that if i felt that strongly i could have them done privately within the practice, but it won't make any difference .. frustrated!!
confused with blood test: Hi All. Hope... - Pernicious Anaemi...
confused with blood test
Hi, would be interesting to know how much it would cost you, and how often he would sanction you having 'private injections within the practice'.
The only thing you could do other than go with your gp is to outside source and do it yourself to see if there is a difference. You could keep a diary log to show gp if your symptoms ease.
The trouble with being within their(gp) accepted levels is that many of us are symptomatic and some highly so and it leads to a verbal fight or submission.
Hi. Thank you for your reply. the practice rang back with the price. £210 for the loaded dose then £35 every three months. I would "reluctantly " go ahead with it but he said i won't have any benefit from it? it seems like a mind field
Have you been tested for PA? I.e.,intrinsic factor antibodies ? I had a level of 150 and had to go to a private GP to get diagnosis Trouble with that test is that the antibodies do not always show up ! If I were you I would have the loading doses if you can afford them (usually 5 or 6 )and see if you have any improvement ! I am assuming that you are not a vegan or very strict vegetarian , which can lead to B12 deficiency . I did this and had an immediate improvement but waiting for 3 months for next injection was terrible . My GP wouldn't give more frequent injections , so now I self inject weekly .? Best wishes to you
I see a private GP. He charged me £96 for the first consultation and £15 per injection. He's really kind and having his support has been so valuable. I think £210 is shocking.
Hi. Thanks for your response. Did the private GP have to take his own blood test before giving you the injections, or did you take a copy from your own gpersonal to show him? Thanks
He listened to me. I'd skewed my previous blood tests by taking a multi b supplement. But I'd been on ppi's for seven years and have a family history of PA. So he said we'd try a course of b12 injections to see what happened. Which is what I asked my own GP for.
Hi danibat82 personally I think he's a charlatan, a profiteer and and a cheat not giving you the treatment you need via the NHS - then wanting to charge those exorbitant sums of money for what costs pennies per shot.
On page 11 in the book "Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. under the heading "Types of tests for B12 Deficiency" talking about the Serum Vitamin B12 Test it says:-
"However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml). We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml
At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml."
The book is well worth while the purchase as is Martyn Cooper's "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" both available via Amazon.
Your level of 230 (if that is what it is) is in the "gray zone" and your symptoms "exhausted , brain foggy, aches pains etc.. " should be treated as a matter of urgency.
Treatment of cobalamin deficiency
"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,
Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks.
The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement.
However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment "
That is the regime your doctor should be prescribing for you.
I wish you well
I have travelled the road you are on.Self inject.know it sounds scary but your levels are low.B12 is non toxic so you will do no harm.pm me if you want more details..linda
Hi, thanks for your reply. I mentioned to my daughter who is a nurse about self injecting. She was horrified! Only because of bying the injections online. I have been looking at the forums, and see no horror stories. I am looking at purchasing from versadanpo in Germany. ?
I've been using them for a while now. They are the online branch of a bricks and mortar place that's been in business for 260 years. The online bit has been running for 10 years.
This is the stuff I buy -
Hi danibat
"his reply was a very firm NO, as it is line with the NHS guidelines ."
Has your Gp seen these documents that make it clear that people who are symptomatic for B12 deficiency should be treated to avoid neurological damage even if b12 results are normal range? I gave copies of these articles to my GPs.
1)ukneqas-haematinics.org.uk/...
2)bmj.com/content/349/bmj.g5226
See Summary points
3) Google "BCSH Cobalamin and Folate Guidelines" I found page 8 and page 29 particlularly useful
UK b12 websites
pernicious-anaemia-society....
PAS tel no 01656 769 717
b12 books
"Could It Be B12" by Sally Pacholok and JJ. Stuart
What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper
It could be that your GP is using local NHS area B12 deficiency Guidelines rather than the BCSH Cobalamin guidelines.
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