hi! I’m brand new here and actually still on a diagnostic path with pernicious anemia. I’ve had neuropathy issues for years along with extreme fatigue. My b12 has been up and down for about 5 years and only ever been given oral b12 on and off. I was given a dose of b12 injected recently but not loading doses as my GP has said that my b12 isn’t low enough (246). My intrinsic factor test was normal but I just can’t help but feel pernicious anemia is the most likely cause here!
has anyone else had trouble with diagnosis or can give any kind of advice?
thank you 💜
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Curiouselephant
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You are very far from being alone getting a diagnosis . . . . . .Near to everyone on here the last few years have had all kinds of diffs' making headway. . . . . . . I absolutely crashed with exhaustion in my 40s. . . . . . No one could find anything wrong to the point I was accused of having nothing wrong with me. . . . .I had worked day and night all my life up until I simly could not and being accused of being a bluffer was a real slap in the face. . . . . .The only near diagnosis I had was fibromyalgia which I didnt agree with. . . . . . . I had no energy and my head could not work anything out yet up until that point I had great dexterity and have had patents by me. . . . . . . . . . I had tingling in my hands and one thigh to the point I had burned myself so a danger to myself I suppose. . . . I was sent to the nerve clinic in the RVH Belfast to be told yet again nothing wrong. . . . . . I started using anything and everything available to me . . . . . . Between supplements and a craving for beef I somehow came around over a period of about 6 months once I was on a path I knew was doing something for me. . . . . I had not a clue and neither did any doctor. . .. . I even told them I feel a lot better if I eat beef/protein. . . . . . . and was fine-ish for about 7 years when I started to fail again. . . . . . In hindsight I can see it was poor absorption and I had added a ship load of vitamins orally and that worked for a while. . . . .The last straw was sore feet and being told to stop eating meat and it was pretty fast downhill after that. . . . . . . We moved from NI to Ireland and once settled with a new GP here made great headway. . . . . . Even my wife got HRT here which was flat refused in NI and got diagnosed with osteoporosis which I had suggested as she was getting shorter by the year and had had a fracture in her spine. . . . . I was never as glad to be shown my results on a screen which I wish I could remember the numbers but I do know my B12 was fine but my Carbocystiene and MMA were elevated. . . . . . . My wife had driven me that day and when I came out I cried as I felt vindicated and wifey was all concerned until she realised it was not bad news. . . . . . Once I told her she replied to me sure thats the jabs yer dad went for every month since we were married . . . . . . So it should have been known it was in my famlily but ignored. . . . . . . Mind though what ye suplement with. . . . . . . B9 Folic acid masks B12 problems. . . . . .
I am adding a little bit. . . . . . . . The cost of B12 diagnosis is minimal and the cost of treating the problem is low compared as my GP put it to the suitcase of antidepressants and endless dope I was getting. . . . . . So I dont know why so many doctors seem to avoid looking at the problem. . . . . . . Especially I suppose as I buy near all my own meds now. . . . . I am not and never will be "well" but I am a whole lot better than I been in over 20 years. . . . . Brilliant Doctors we have here where we are now. . . . . . . Maybe we just hit lucky I dont know
Another bit. . . . . . . . . My eldest daughter done her honours in dietetics so I have help at home also. . . .
There is concern that high intakes of folic acid from fortified food and dietary supplements might mask the macrocytic anemia of vitamin B12 deficiency, thereby eliminating an important diagnostic sign.
Hmm I had understood that low levels of folic acid would prevent B12 being utilised properly and therefore the B12 levels would remain falsely high …. Therefore masking a functional deficiency. I need to do more reading !
Welcome! I'm very early on the journey too I know that the intrinsic factor test is very unreliable (I think almost half of PA patients come back negative) so it can be used to confirm PA but can't rule out PA. Another test is parietal cell - have you had this one? It's more reliable but multiple conditions can cause the test to come back positive, so it's a bit of a jigsaw puzzle!
was 246 before your first ever injection ? If not what was the result before?
I was diagnosed at 190. Not much lower that 246 and I was bed ridden with fatigue.
You are absolutely low. Doc's just don't understand.
this article points this out and the many other facts you need.
Just find a doc who will give you daily or eod injections or just buy your own supplies and start injections. I tell people to find a doc who will give you injections and have their staff teach you how to inject. Don't tell them you plan to buy your own supplies. Then go get supplies.
Get liver and kidney function tests. If those are normal, then you are safe to inject as much b12 as you want.
Your symptoms are all B12 deficiency related and you need to be on regular B12 supplementation. I would suggest you try weekly injections till you feel normal and then you might be able to reduce the frequency. The other option is orals but they take some time to really kick-in, so they can be relied upon only for maintenance and even don't work for all. Don't delay and at least start some orals till you are able to arrange the shots.
My road to diagnosis was long and frustrating! When pregnant with my youngest, (now 31) I started dropping my iron, despite tablets, and I wasn't feeling great. Well, I was pregnant, what did I expect!
Fast forward, 14 years of being told it was stress making me feel ill, as I had two differently abled children. Went to the docs and a locum took one look at me and ordered bloods. I was diagnosed with megaloblastic anemia. Doc gave me more iron and did no furthur testing, because I was 'too young for the other thing'. At the time I had no idea what the other thing was. So I was told that it was all my own fault for not eating properly - I was eating a perfectly good, well balanced diet, but the Doc didn't believe me. So I was told to take a daily multivitamin tablet if I was going to continue being a 'silly girl'.
Another ten years later after various hospital visits for chest pain and stroke symptoms, I put two and two together after talking to my Mum, who has P.A., Doc did a B12 blood test, which was 'normal' at 256. So, I sat in the Doc's office and refused to move until she ordered an IFaB and parietal cell test. She told me that I was wasting her time and NHS money and to go home. I refused to move! So she ordered the tests, telling me it was a waste of time and effort. She then had to eat her words when both tests came back positive!
So yep, I had problems with diagnosis - it took over 20 YEARS!!!! I tuly believe that if I hadn't have had the strength to stick to my guns, that I would be dead by now. As it is, I have neurological damage that I guess is now permanent, as I have been self injecting for quite a few years now.
If a Doc had tested my B12 levels when I first complained of not feeling right 31 years ago, my life now would be very different. Moral of the story - if you think that something is wrong, then it probably is! Don't give up and don't be gasslighted. Stick to your guns.
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I know that the intrinsic factor test is very unreliable (I think almost half of PA patients come back negative) so it can be used to confirm PA but can't rule out PA. Another test is parietal cell - have you had this one? It's more reliable but multiple conditions can cause the test to come back positive, so it's a bit of a jigsaw puzzle!
diagnosis and symptoms
Measuring B12 levels after PA diagnosis 
Diagnosis 
Diagnosis
New pernicious anaemia diagnosis
