This was my appointment after my loading doses and blood tests. Well I expect you can all guess how it went! I told my GP that I still had numbness and tingling. He told me that it was unlikely to be related to the b12 deficiency as my levels were now up following the loading doses and that it was unlikely I would have symptoms from b12 deficiency as I was not anaemic. He then double checked what my calcium levels were to see if maybe that was causing it but they were fine. He showed me the results from the ifa test which was 2.6 with a range of 0-6. So no obvious reason for low b12. He suggested 3 monthly injections going forward. When I tried to discuss this he told me that last year the surgery did an audit and at least half of everyone on b12 injections were trialled on tablets and they have managed to keep their b12 levels up on tablets. Get the impression they are anti injection! I did not have my print outs with my me as was off work with a migraine on Monday and all my prep was there!
Needless to say I am not satisfied with 3 monthly injections and now plan to self inject. Using info from previous posts I have ordered everything I need. I now need to overcome my needle phobia!
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Padders12
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My understanding (I'm not a medic) is that Antibody Negative Pernicious Anaemia can be diagnosed in someone who
1) Is symptomatic for B12 deficiency
2) has had other possible causes of low b12 eg diet, excluded
3) Shows a clinical response to b12 treatment eg symptoms improve
4) Has a negative/normal range result in IFA test.
PA requires lifelong treatment with B12 injections (in UK)
Has your GP seen the flowchart?
"he told me that last year the surgery did an audit and at least half of everyone on b12 injections were trialled on tablets and they have managed to keep their b12 levels up on tablets"
Think Martyn Hooper of PAS might be interested in hearing about your surgery.
My GP doesn't seem to be aware of anything! He did not listen to me about any of my concerns. The blood test I had was 6 days after the first loading dose and 30 mins after the second. I asked him if it may have interfered and he said no. He also said that he would have expected my levels to drop and as they were 100 in 2010 and 111 now must be absorbing some.
I don't want to wait any longer to feel better and will probably just accept that there is no reason at present and concentrate on getting myself better!
I can understand not wanting to wait any longer...I got to that point.
"He also said that he would have expected my levels to drop and as they were 100 in 2010 and 111 now must be absorbing some. "
What's the reference range for serum B12 in your area of UK?
A typical range in UK is 180 - 900 ng for serum B12 but ranges vary across UK . Reference ranges are usually next to blood test results on copies of test results.
I have not have any b12 treatment before as although tested low in 2010 after going to GP about fatigue, I was told my result was normal.
I was tested for celiac as well and my result was <0.1 with a range of 0.00 - 4.00 so he said a definite no for celiac. I definitely have adverse affects when eating wheat but may be just an intolerance. I suffer from ibs but was told that would not cause absorption issues.
He told me that sometimes people never find out. I had a few tests and the only one which showed anything was b12.
I have been tired for so long that I don't want to fight. I just want to feel better and I can do that myself. I think I will switch gps as have just moved and there is one closer to me. I will see what they say.
Hi Padders,I've given up on GPs who seem to either be miss informed about B12 deficiency or don't really care. I was told classic neurological B12 deficiency symptoms were unlikely to be caused by my low B12 (72 at one point.) When given injections they improved.I had a hard fight which was very distressing and got them to agree to alternate day injections for 4 weeks then 2 monthly.I am now self injecting and feel much better but continue to go for 2 monthly injections to keep me on their radar.I will continue to self inject for life as the wrong treatment from GP could have dire implications .Its actually painless when done on thigh. Good luck.
Thank you for the support. I am going to practice on some oranges first to see how I go. I am hoping the desire to feel better will outweigh the phobia😬
"I was tested for celiac as well and my result was <0.1 with a range of 0.00 - 4.00 so he said a definite no for celiac. "
If you only had one test for Coeliac disease it was probably a test for tissue transglutaminase IgA (tTG IgA)
if you look at the link to NICE guidelines on Coeliac disease you will see in Section 1.2.2 that two first line tests are recommended,
total IgA and
tTG IgA
Total IgA test is recommended because some people have IgA deficiency which means they will not make the tTG antibodies and will need alternative tests for Coeliac disease.
I think without doing the recommended total IgA test it's difficult to be sure that a person does not have Coeliac disease. If they have IgA deficiency then their tTG test will appear to be negative/normal range.
I would have thought that with a 2017 test result of 111 (ref range 130 - ?)and previous low B12 result in 2010, GP would be worried about the potential neurological consequences of long term B12 deficiency eg possibility of SACD
What is sacd? Not currently a member of pas but think I will join as so much useful info available! Every time I asked my GP about other tests he gave me the "what do you know" look! I agree that neither my pa test or my celiac were conclusive. I think the gp's are both under educated and penny pinching and therefore try to avoid more tests than they think absolutely necessary.
I think I will try again when I have switched gp's and have a bit more energy!
SACD stands for Sub Acute Combined Degeneration of the Spinal Cord.
The PAS article about neuro consequences of PA (link in my post above) mentions SACD.
If you join PAS you can access PAS article on SACD, link in post above. You can also access details of PAS support groups if a member. These can be a source of valuable info eg helpful GPs in the area
The needles are short inch long, you can hardly feel them. I guarantee u that you will be fine.
As there doesn't appear to be any problem with adverse reactions Padders12 then having a go yourself would seem to be a sensible proposition. (I am not medically qualified though so this is just my personal opinion.) I know what you mean about needle phobia and I suspect everyone who has to contemplate it has it to some degree. There was time when I would refuse to let anyone near me with a hypodermic needle so the sugar lump for the polio vaccine was a life saver for me as I was fortunate enough to be included in the clinical trials for it.
I was invited to self inject during the loading dose period and as my daughter had experienced serious problems from trying to get appropriate appointments for her B12 injections before she went onto SI 15 years before I agreed. That first time wasn't too bad and then the second time when I had to set everything up as well was better. When I came to do it on my own it was fine until I actually had to point the needle at my leg and then push it in. After a few moments steadying the nerves it was no problem. Now I disagree with some on this forum as I push the needle in slowly and it doesn't hurt a bit, then try pulling the plunger back to check I am not in a vein - and it doesn't come back so everything is ok - followed by slowly pushing the plunger down and injecting that tiny amount of the wonder drug which is also such a lovely colour. Pull the needle out quickly and a gentle rub of the area and then clear up the bits and pieces. All over until the next time.
There is a maxim I was taught a long time ago - If you can do it once, you can do it twice and then you can make a habit of it. It really is so very easy to do.
I hope you can find the courage to have a go for yourself as the benefits are so valuable - you will be in charge of your own treatment.
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Hallelujah 
Update! Seen my GP again. B12 272 folate 8.8
Another GP visit...
B12 deficiency - more frequent injections
If you are going to be ill, be a dog!
