I was first diagnosed with Pernicious anaemia 3 or 4 years ago but thought nothing of it until my legs and arms started going numb and I kept falling round the place and had difficulty walking and getting up from a fallen or seated position. I now am aware of how serious it is, I've stopped drinking/smoking, eat well and have been following this forum which has been very helpful in raising my awareness of the disease and how it can be battled. I've had a consultation with an expert in England (I live in Ireland where I haven't heard of an expert) and am going to start self injecting. I'd like to have my doctor on board but so far he's having none of it as he says recent blood tests show (and they do) high B12 and no parietal antibodies (I think-at this stage I'm a bit out of my depth) and now he's questioning if I have PA at all. He maintains the evidence shows that I've too high B12 levels, no (I think)parietal antibodies (I don't understand this yet) and that without evidence no competent doctor or doctors body would prescribe injections every other day. I want to give him that evidence and convert him,so.....am I right in thinking the high B12 levels may not be functional B12 and that my body çant (or has difficulty) absorb it on a cellular level?
I need someone to explain the parietal cell bit to me and acopy of the society's leaflet for doctors and really abrief guide to PA for morans. Should I read the book and I'd be interested to hear from anyone in a similar position especially Irish readers like the old man whose experience in this jurisdiction could be useful.
Thanks for listening and keep up the good work. It really is big boost to know there are others out there in the same boat or similar or even that there is a boat and I'm not raving
Whiteways4711
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Whiteways4711
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Nothiing strange about high b12 results but they'd need to check a load more before turning ye down as such. . . . . . . . Where are ye. . . . . . . I in the mid west
The usual test for Pernicious Anaemia is the Intrinsic Factor Antibodies test ( IFAB) .BUT this test comes up as negative in about 50% of P.A. patients . . Doctors should know this if they read the guide lines. .
But you have a diagnosis of P.A. How did you get the diagnosis ?
. You can have what’s called a functional B12 deficiency with a high B12 (when you are not supplementing with B12 ) , which means that the B12 is not getting through to your cells
. Your doctor should be making his judgement on your symptoms , after he/she has eliminated all other causes of B12 deficiency — namely ………..
Causes of vitaminB12 deficiency.
In the U.K. , the most common cause is Pernicious Anaemia . This is one of about 100 autoimmune conditions.
The body “turns on itself” and produces antibodies that destroy the parietal cells in the stomach . These cells produce stomach acid and a glycoprotein called the Intrinsic Factor, both of which are needed in the process to absorb vitamin B12.
A positive test for Intrinsic Factor antibodies in the blood is proof of Pernicious Anaemia.But about 50% of Pernicious Anaemia patients test negative. Doctors must realise this, and make judgements according to the patients symptoms , and by ruling out the following other causes of B12 deficiency.
Diet is important, as B12 is only found in meat , fish , dairy products and eggs .So vegans and strict vegetarians must supplement with tablets.
Stomach operations can prevent B12 from being absorbed .e.g. Bariatric surgery
Certain medicines , like Metformin, Proton pump Inhibitors ( PPIs) antacid preparations and many other medicines also hinder the absorption of B12 .
Helicobacter Pylori bacterial infection can also cause B12 deficiency.
Certain diseases eg Crohns and Coeliac disease and other diseases can cause B12 deficiency
Abuse of Nitrous Oxide ( laughing gas )
Infestation of fish tapeworm ( different to meat tapeworm) caused by eating raw or insufficiently smoked fish
The elderly can also be vulnerable to B12 deficiency because as they age,they produce less stomach acid , which is vital to the absorption of B12.
Pernicious Anaemia is treated with life- long injections of B12 because it cannot be cured. Tablets are not the answer .
Initially 6 injections are given over 2 weeks .Different patients require different regular maintenance of the injections to keep them free of symptoms ( anything from daily to once every 3 months) .
In the case of neurological symptoms , every other day injections are needed until no improvement occurs .
Delayed treatment can result in irreversible symptoms .
There are many German online pharmacies which will supply Ireland with B12 ampoules . If you decide to self inject . In the UK , because of Brexit , we don’t have many who will supply us .
that is interesting I have recently had a high result of over 2000 ng/L and after a endoscopy after biopsy they discovered I had Helicobacter Pylori bacterial infection. Also paid private for b12 shots 5 months ago not sure if that’s why the result is sky high still
Many thanks everyone for your comments and advice. To clarify I was originally diagnosed by my GP 5 years ago, diagnosis confirmed by a Cambridge specialist (lm not sure if it's OK to name names) and I intend to start frequent B12 injections as I believe this is the right course for me. I'm trying to collect evidence to convince my sceptical doctor that this is the case so that I am working with him rather than against him, also to broaden his knowledge on the subject, and last but not least I'll get the stuff free if he prescribes it (and oddly there's something a bit seruptitious/junkielike about ordering thru the post-my bad. By the way I'm posting from Co. Clare in the West of Ireland, I'll let you know how I got on,Whiteways4711
Thanks Mixteca that's good to hear. He seems to know what he's talking about ,has done the work, and has many 👍👍👍I'm going to follow his advice going forward and try and bring my doctor with.
Is there any possibility of dehydration. . . . . .Some of those symptoms fit the bill. . As we get older drinking seems to be something we do less and less. . . . . I have a neighbour in his 80s and every time he admitted to hospital he is dehydrated and even I have suffered from it and I am aware of the problem. . . . . . I drink a table sized glass first thing before bathroom in morning and another before breakfast and I drink a table sized glass along with every meal of any sort. . . . . i do not rely on cups of tea/coffee as that is simply not enough to hydrate anyone
If you've been diagnosed with pernicious anemia, then you still have it, as there is no cure. If you were somehow cured this would be a medical first, and you will make the papers! Forum members will demand to know how! However... back to reality 😁
Tests for intrinsic factor antibodies may come back negative 50% of the time, even though you have PA. Ask your doctor to read up on the specificity and limitations of the test, they are well known and it is just lazy for him not to read up on this before making conclusions to you about it.
I'm not sure the reason for high B12 but B12 can be elevated for many months after injections. Once treatment for PA/B12 deficiency has started, measuring B12 is no longer useful to guage effectiveness of treatment, only the effectiveness versus symptoms matters.
There is more good info in the pinned post on the right column "Various B12D/PA Resources". It was compiled in the hope of not endlessly repeating same advice and information.
If you are on any kind of b12 supplementation, oral or a recent shot, B12 will come out high. Since you have already been diagnosed once for PA, you have PA and high B12 in the blood is not a criteria for treatment. Go for self-injection. Every other day may not be needed and in my experience, once-a-week gives as good results. Note that it will take time for the body to heal once the B12 is fixed.
More specific to functional B12 deficiency are the MMA and homocysteine tests. If your doctor can prescribe these, they may be helpful.
An MMA (methylmalonic acid) blood test can help identify whether there is a functional B12 deficiency issue: If B12 and MMA are not making the connection that will enable B12 to be transported to cells and tissues, then both B12 and MMA will build up uselessly in the bloodstream - and you will continue to experience worsening B12 deficiency symptoms.
If there is insufficient B12 in the bloodstream to start with, and MMA builds up, the loading set of 6 injections should rectify this - and that would indicate B12 deficiency, not a functional problem.
So if your B12 is measuring as high (you don't say how high), yet you are symptomatic, a secondary test on serum MMA might explain why. This test is not easily available from local labs so primary care can struggle to get this done. A GP referral to haematology might even get you there quicker.
High MMA levels might also indicate renal problems or small intestine bacterial overgrowth (SIBO)- both of which would need eliminating as the cause for a confirmed functional B12 deficiency diagnosis. SIBO identification relies on monitoring a series of fasting breath tests over the course of 3-4 hours. Since the SIBO bacteria rob you of essential vitamins anyway including B12, there would be no reason to hold up B12 treatment until after testing.
Renal problems only needs a blood test to rule out, so no need to wait on this one.
When you were first diagnosed with PA, what treatment was offered to you ? Were you given injections at all ? Were they continued ?
I’m very confused, I was diagnosed many years ago and have been getting the injections every 12 weeks at first and then every 10 weeks, from the practice nurse at my GPs. On May of 2021 I was diagnosed with AML (Acute Myeloid Leukaemia) I was in hospital over a 7 month period-I got home for 1 week after the first round of chemo, I had taken an infection and ended up with with infective endocarditis and was told while trying to fight this infection that I could die, but I survived. After the second round of chemo I had the endocarditis again but this time I got sepsis and had to be transferred to the high dependency unit, they didn’t think I would make it this time. But again I survived— I have great faith in God and have good support from family, church and friends. After that they didn’t know what to do with me! So they just sent me home for four weeks. I still had two more rounds of chemo to get. Finally after a month I was back in hospital and this time they started the antibiotics at the same time as the chemo I sailed right through it without any problems. I was then sent home with the last round of chemo (tablet form) for a year. At the very start they said my B12 was high and I don’t need it anymore. Also I didn’t need my vitamin D any more, so since the first week in May 2021 I’ve not had both of these medicines, I’ve been so so tired that I still after all this time (even though I’m in remission and they say my blood work is all in good or acceptable levels) need my granddaughter to come in and do my cleaning, I can’t even cook from scratch a proper meal, I ended up getting meals sent to me and I just take one out the freezer and put it in the microwave. I’m so exhausted and discouraged to still being at this stage.
I’ve also got Fibromyalgia, Chronic Fatigue, IBS and Reflux. The doctors who treated me in the hospital were Haematologists you would think that they should know about your blood levels when your on B12 injections. I just don’t understand this. 🙁
Dear Whiteways4711. Here's what know. I went to a hematologist who said he'd be shocked if I had PA. He ordered an IF test(intrinsic factor). Results came back positive for auto-immune antibodies. I had PA. Guess he was shocked. There are 2 things they look for in the IF test.
1 Blocking antibodies
2 Parietal cell antibodies
You can read about how each plays a role. My test said negative for the Parietal cell antibodies, but positive for the Blocking antibodies. Bingo I had PA. If you have one of the two or both, then you have a 95% or greater chance of having PA. So, pretty much any of them detected means you have PA. My wife had the test, but the Dr. only requested for her Parietal cells, so does she have the blocking type? We still don't know, but her symptoms have all improved since she started doing B12 shots and she does not seem to have all the severity of so many symptoms like I do. If she one day becomes more problematic for PA, then we know to test for the blocking ones. I thought they tested for both, but you have to be certain they check for both or you won't know for sure. If you have the IF test and it turns out negative for both, then you should feel pretty confident you do not have PA. My B12 levels showed 1,650 in the same month the IF test showed me having PA now shows over 2,000 with all my B12 shots. The lab tests show how much B12 you have in your circulating blood, but it does not indicate how much is in your reserves in your liver. About the lab testing levels or ranges for B12, they're about as helpful as a spoon in a mosquito-catching contest. Hope this helps. MJat
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