In march I started my own treatment of inject b12, hadn't been tested for b12 but the doctors waste of time, anyway then found out p.a ran in my family, had a blood test while I was heavily supplementing, even though I told the doctor I was injecting and taking orals, bloods came back in the normal range of 700. after finding out this p.a can be serious decided to stop the b12 wit for my symptoms to get bad again and have private active b12 done, got my active b12 back yesterday was >128, while I was waiting for my bloods to come back see that it was more accurate to have an umma, so done one of these last week, need to wait 16 days for result, have I still got b12 in system form injecting or am I barking up the wrong tree with having p.a! Have nearly all the symptoms of p.a and also the b12 did start to make me feel a bit better! Not a miracle cure but could start to walk a bit further, stay awake during the day, tinnitus calmed a little bit, I'm not the type of person to fall into the placebo type thing, as been having failed treatment for 6 years for chronic migraines, also I woukd say I have had symptoms of p.a for 6 years, surely I would have got seriously ill if I had, had p.a for all that time?
Thank you so much for you time
Liz x
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Lizreds1
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Hi Lizreds1 I'm not a medically trained person but I've had P.A. for over 45 years and it was 13 years after gastric surgery in 1959 before I eventually got a diagnosis in 1972 - the stomach surgery being the prime cause in my case.
We store several years worth of B12 in our liver and this is topped up by a good diet of animal products which together with Folate from vegetables keeps everything in balance.
However, as you say P.A. runs in your family you need to be tested for Intrinsic Factor antibodies to establish whether that is the cause of your (previously) low B12 levels.
That you have injected and felt a benefit suggests you may be on the right track and "accidentally" given yourself the correct treatment for P.A.
Going back to my own case, in 1968, (four years before my P.A. diagnosis) I was sent for a "Schilling" test which involved my being injected with a massive dose of B12. The test came back inconclusive for P.A. but perhaps "accidentally" the boost of B12 enabled me to struggle through the next four years until a second Schilling test came back positive.
I know you don't put great store in your doctor but list your symptoms, mention your family history and ask to have your Intrinsic Factor tested. Sadly the modern day test is itself not that accurate so it's a bit of a lottery.
You'll also need to ask for your Folate to be tested. Have you been supplementing with folic acid whilst B12 injecting?
Read through the NICE guidelines below. Click on the link, then on "Scenario Management" - read down and learn how your doctor should treat you.
Thank you for your reply, when the doctor ran my bloods she tested for if too, I hadn't been adding folate while injecting b12, my folate was just with the lower range, but only just, also my was just within the upset range by one point, oh my if was fine! I only supplemented for a very short time, I think two weeks, my tests that I'm having all seem to not point to b12, if my active b12 is so high why don't I feel fine? Don't get me wrong I don't feel nowhere as ill as I was before I had any b12 supplements, I did feel like I was dying before the b12, I can treat myself as I'm involved with the fitness world(used to be a fitness fanatic before my illness) and fairly easy to get hold of b12 injections. But was desperate for a diagnosis, I have been called all sorts of lazy names(even by doctor), as I said was super fit and can't stand being called idle and lazy!!!
Well, as I said the IFA test is not very reliable and as you cannot overdose on Vitamin B12 as being water soluble any excess is excreted via your urine and you apparently derive benefit by self injecting, in the absence of any help from your doctor, you may as well treat yourself as if you have P.A. as long as you have the wherewithal and means to do so.
However, as you say your Folate level is at the lower end of the range, please do also supplement with folic acid which can be bought cheaply at your local chemist.
Remember too that I'm not medically trained so my "advice" can only be based on my personal experience.
I wish you well.
Just a thought Lizreds1, but have you considered Magnesium as a possible concurrent deficiency. Mg is easily lost with exercise (I see you have done a lot) along with stress, caffeine and alcohol and others. I first became interested in it as my son does a lot of cycling so I bought Dr Carolyn Dean's book "The magnesium miracle", she is an MD, ND and I think she has specialised in Mg for about 25 years - so I hope her credentials are reasonable. I have been topping up myself since reading it, as a deficiency can cause pins and needles, muscle spasms and migraines (although I know there appears to be some disagreement on that).
However, as I said it is just a thought and here's a link if you don't want to invest in her book, she does have her own website too I think and a blog so you can make up your own mind.
Because I suffers chronic migraine, I used high dose magnesium for quite a while, but sadly didn't get no benefit, I used 600mg a day which is reccomended for migraine
Hi Lizreds1 - its all a bit like breaking the Enigma Code - I think we would all have been good at that!! I have never had migraines, just headaches, and starting B12 SI relieved them a lot, but not quite. I tried Mg Citrate and it didn't do much so I tried the Pico ionic Mg (which goes straight into the cells) and it seems to have done the trick.
However, my sister, who lives in the States suffered badly with migraines and eventually went to a Naturopathic doctor. He gave her a two-pronged approach. Keep a food diary, and watch out for MSG in food (monosodium glutamate), sugar and caffeine and give it 1 week. The other was that it could be a deficiency in prostaglandins which can occur from a lack of dietary Essential fatty acids (Omega, 3's etc) plus Calcium and Magnesium in a ratio of 1:1. Can't remember what worked for her, think it was the Omega 3's.
Anyway, migraines sound absolutely awful - hope you can find an answer.
the tests you have had are tests for B12 deficiency - not PA which is a particular cause of B12 deficiency.
really need to see what the MMA test results are - should be elevated if you have B12 in your blood but its not getting through to your cells.
I can trace my symptoms back over 40 years - because B12 is stored in the liver it can take decades for deficiency to build up - though symptoms will tend to snowball towards the end as the absorption problem gets worse and you run out of stored B12.
One feature of B12 deficiency as opposed to folate deficiency is that it tends to develop slowly over time.
However, at the end of the day it is also possible that there are other things going on - and it may be that there is more than one thing going on.
So everything is pointing to me being fine, however all my symptoms that seems to have abated since my injections are returning, I have started supppementung folic acid, but the main sympton that's returning fast is the head fog/pressure, I seem to get pressure in my head like I need to 'pop' my ears! Havnt had this since I had my injections, and pressure behind my eyes. I can pinpoint the exact day 6 years ago I felt the b12 defiency, my ears started ringing like I had been too close to some really loud music speakers, and yes gradually and slowly got worse, the worse symptom was the chronic migraines, but they are very few and far between since injections, even stopped the Botox injections for migraine, shall I have another injection and see how u feel? Also not sure how much folic acid to take, original bloods said folate was just a tad over the lower limit! I didn't know if I would be defiecient now as the b12 uses the folate?
if you aren't deficient in folate then would suggest 400mcg of folic acid from the supermarket.
Not entirely clear from the post if you have been self-injecting but if so suggest you go back to injecting yourself with whatever frequency you need to make you better.
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