Hello to you all on this precious platform, thank you for saving my sanity on many occasions.
I was diagnosed with pernicious anemia 10 years ago. My elder sister, following a lengthy battle with her GP was diagnosed a couple of years ago and given loading doses followed by 8 week top-ups. We both SI in an attempt to get back to who we were, and what we could achieve pre PA.
Our younger sister has just received the results of recent blood tests which show as 'borderline', and no treatment has been offered. Elder sister received the same results, before battle with the GP commenced.
Can anyone please explain how IF results can show as borderline?
Younger sister has gone straight to SI. Am I correct in believing that any future blood tests will now never result in a PA diagnosis?
Our mother had presenile dementia, which eventually took her life. We are convinced this was a result of B12 deficiency.
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Discombobulated247
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There is a strong Family History and I am dreadfully sorry to read of your poor mum. I note that :-
1) Mother.
2) 3 daughters which consists of :-
a) An older sister who was diagnosed 2 years ago.
b) Yourself who was diagnosed 10 years ago.
c) Now, your youngest sister has received ‘borderline results’.
Therefore, your youngest sister has first hand experience of seeing your mother and her older sisters with this disease. Plus, is aware of the lengthy battle and events around your poor mother.
Therefore, your youngest sister is being proactive and has opted for blood results not to become pathological. Thus, reducing further complications and to have a better Quality of Life with a better outcome.
In medicine, we use jargon such as likelihoods and probabilities. Therefore, it is highly likely that your youngest sister has Pernicious Anaemia where pernicious means deadly.
Please note that Clinicians need to be aware that Diagnosis is to be achieved in a timely manner.
By your youngest sister responding to treatment, confirmation of an illness, condition or disease can be achieved. It is called Cause and Effect.
Please consider that the 3 of you join the Pernicious Anaemia Society, Bridgend who can provide you with literature to pass to your General Practitioners, other Specialists and Health Professionals. So, they maybe properly educated and can use your individual cases and the information as Evidence in their Continuous Professional Development showing that they are Up to Date with Clinical Practice which is for revalidation of their medical registration.
Plus, your names are individually are used in research which includes ‘length to diagnosis’.
I must admit that washing my dishes, I thought Oops, I forgot to put the PAS. There is only one PAS.
I merely added Bridgend for my own personal reasons and ties to the town. We want the cycle of Education to continue for doctors, nurses, midwives, physiotherapists, occupation therapists etc. to continue. So, care and treatment is Patient Centred.
Yes most of us on here know the risks. Unfortunately, in the wider picture, most people don’t know the risks, which is a scary fact
However, I’d like an honest and open discussion about Disco247’s question. It’s fine if you don’t have the answer, hopefully someone does and will come along soon
Okay, so say as a patient you complained of headaches and migraines. As a clinician, I ask questions. There is no scientific way to prove you do or do not have them.
I have to take you very seriously. I have to make sure that nothing sinister is occurring. So, neurology input but I would examine, ask about nausea, flashing lights, when they occur, how often. Any warning. What makes them worse or better. A whole host of questions.
I prescribe analgesia and inform you what to do if they worsen. Giving the appropriate urgent and emergency telephone numbers.
Medicine is Evidence Based Practice but a clinician’s individualpractice is Art. It does not rely on a computer, or an arbitrary figure on a screen.
So, I believe the patient has migraines. So, if the analgesia stops or reduces the patient’s headaches/migraines then the Diagnosis is simple.
My family and I practice ‘old school’. Let’s take a good look at you, I’m just going to wash my hands. I am going to feel, listen and touch your body with your consent. Is that ok ? We are gaining informed consent. Can you show me how you walk please. We have already observed how they staggered, limped into the room, we have clocked how they have sat down. We may offer an arm or support them to the examining couch. We are absorbing a huge amount of information. May I take your pulse please ? A machine will only ever give a number. When a person presents their wrist, I note their movement, their skin, I feel how warm, cool their body temperature is, I feel the strength of the pulse and lastly I count beats per minute. Then I would order blood tests via the computer and ask them to book an appointment at reception to see the phlebotomist. I would tell them which bloods and if they wished to take a photo of the form on their SMART phone or I would think, hey let’s just take bloods now, if I had equipment of blood bottles in the room.
Migraines are associated with P.A./B12D and coeliac disease/gluten sensitivity.
I have masses of information to work with. I get a much better idea of what that person is really suffering. 😘
Oh bless you, I’m a complete weirdo and Welsh, I would call you love or Lovely which working in Londinum did not go down well. So, just to be more annoying, I’d do proper sing song Valley accent and say, I’m thick and Welsh, we don’t even ‘ave cars. Got the shock of my life when I moved ear. 🤣😂
You can still have an IFA test for PA but you need to stop supplementing for about a week before the test as supplementation can cause false positives. But the test isn't very reliable as it produces false negatives 40-60% of time.
What if oral supplementation has taken B12 to good levels?
B12 levels that have risen as a result of oral supplementation look good on paper. A straightforward B12 test won’t show us why levels are good or whether the B12 is active
If a more definitive test is done, say homocysteine or MMA, do those tests show us if we have PA even with a high B12 level that’s been gained through supplementing?
Once a person has raised their B12 levels with supplementing, they will always be in danger of not getting a diagnosis as medics will say their levels are good or even high. This happened inadvertently to me before I knew not to supplement before a test. The only way to get a true reading after that is to come off supplements, but that can take months and obviously the person becomes more ill.
I believe from previous answers to my posts that you have to cease B12 for some time before IFAB, but this seems to vary. Also I believe the same applies to homocystein/MMA too. Not to say it won't give a positive result, but that it can be affected.
Thr pathways for diagnosis show however, that if there are neuro symptoms, these should be treated anyway, but as we know, many GPs and even consultants are unaware of this.
Hope that helps, altho there are many on here who know much more than me on here, so I'm happy to stand corrected! 😊
MMA being (still) raised after B12 injections have started (ie both serum B12 and serum MMA high):
This would show that the introduced B12 is not making the expected link with the methylmalonic acid (MMA) and both are then stuck, the B12 unable to be transferred to cell/tissue level. That would indicate a functional B12 deficiency.
Usually, those with B12 deficiency would find that their MMA drops back down to within range quite quickly once the injections start - certainly by the time the set of 6 loading jabs has been completed. Someone with PA would normally find this to be true.
My MMA did not drop into range for about three years, on my 6th MMA test - despite frequent B12 injections. My 3 Intrinsic factor antibody (IFab) tests were as expected - all negative !
MMA tests are usually difficult to get requested at primary care level. It can be used if B12 deficiency is suspected due to symptoms presented, but serum B12 result is returned as borderline. A second test as a double-check.
It can also be requested if there is no alleviation in symptoms despite B12 injections, and patient continues to deteriorate. A check for the functional problems mentioned above.
Without B12/ with insufficient B12 available in bloodstream, MMA will rise, and continue to rise, sometimes to quite alarming levels, if lack of B12 is not addressed. This is why hardly anyone stops to check it initially - well, that and being unaware of it's existence and function ... and the prohibitive costs ... and local hospitals being unable to provide this test. My GP tried three times before she found a hospital that would say "yes".
Most of my MMA tests were requested by haematology consultants. Easier for them.
"Functional B12 deficiency" really just means that there is something wrong somewhere in the long and complex process of getting the B12 to where it is needed - to cell/tissue level. B12 is needed in every cell in your body. If your B12 injections aren't getting to where they should be, your blood test could show that your B12 is high - but you would still be suffering from B12 deficiency, because of a malfunction.
One of the points at which a malfunction can be monitored is with the linking in the bloodstream of the B12 and methylmalonic acid (MMA). The MMA would normally take B12 on to cells and tissues - so a build-up of MMA in blood could mean that this link is not being made effectively. Injected B12 would in this case be measurably high in the bloodstream -but most of it would be unable to go any further.
B12 deficiency symptoms can be wide and varied - from stiff numb feet and difficulty walking to hair loss - and everything in between. Some are very visible symptoms like fingernails with vertical grooves or a cobbled surface and no moons. Some are invisible but far more of a problem - like not understanding what people are saying or short-term memory loss. If untreated or under-treated, the symptoms can get worse or increase in number or frequency.
The treatment for "functional B12 deficiency" is to give the patient frequent B12 injections - ensuring that sufficient B12 can manage to get through to the cells and tissues. So serum B12 will remain necessarily high.
There are other conditions that can cause MMA to be high - so renal problems need to be ruled out (blood test) and small intestine bacterial overgrowth (SIBO) - ruled out by a fasting series of breath tests taken over 3-4 hours. The bacteria rob the poor host of several vitamins, including B12.
But for most people with non-dietary B12 deficiency, MMA will be within range once B12 replete (after loading injections completed). For those who have B12 due to malfunction problems, that will need plenty of B12 just to get enough through. Luckily this is quite rare.
This explains the Diagnostic Process. It is not simple and cannot be hurried. Unless, it is an emergency or urgent, then we pull out all the stops.
As stated, the Cause and Effect. So, if Discombobulated247’s younger sister responds to B12 treatment then they have diagnosis. As a matter of Candour which works both ways between Patient and Doctor so promoting trust, it is very advisable that Discombobulated247’s younger sister informs their GP of SI. So, they can be taught properly by a Practice Nurse. This reduces resources on GP Surgeries.
I am non clinical. Yesterday, I did not leave my home and have first, worked with Computers. I know that people become very addicted to technology. Me, I shut it down, airplane mode and go out into the big Wide World. www = World Wide Web. Not a chance in Hull.
So, on average an autoimmune disease can take 10 years to diagnose. I definitely do not wish people to be fobbed off with antidepressants, sent for Cognitive Behavioural Therapy, told to exercise or whatever other nonsense .
At one appointment, I took my PACING planner to an appointment :-
The doctor was suitably impressed. I was polite but firm, That is how you run a ward.
I meant these are all the basics that are to be achieved, however, I know that my staff and I will be hit with emergency after emergency.
But, I would have checked my emergency equipment, stock of emergency drugs, know my staff are ok and to come to me with any problem, the place was spick and span because of Infection Control.
Then when I learnt of P.A./B12D, I cried for a whole day because I had not been taught. All those people I had let down by not knowing. So, I am now doing something about it. Midwives are affectionately known as rotweillers who wear lipstick. Devoted, self-assured, steady and fearless.
If your younger sister has any symptoms of B12 deficiency ,and a “border line Intrinsic Factor Antibodies result with the medical history that you mention , she more than likely has P.A. and should start treatment with B12 injections ASAP . The condition is not called PERNICIOUS for nothing . There’s always this confrontation when it comes to getting adequate treatment for P.A. I can’t imagine why —B12 injections are cheap -But there’s no connection to “ Big Pharma “ . … Make of that what you will . ….
. It took so long for me to get treatment , that I now have an irreversible symptom that impacts my life . Dont let it happen to your sister. I now self -inject to keep well . Very best wishes .
Me too, very grateful for all the knowledge and support. I find it very difficult to not loose it with GP's at the moment. When I first suspected PA was one of my problems They just ignored my concerns , I supplied lots of information, tried to educate and the response was to gaslight and threaten me with all the problems and dangers I was putting myself in by SI. Then the sneakily added a B12 test in with regular tests and started to tell me how dangerous such a high level was. I did stop injecting for a little while but soon felt things deteriorating and restarted. I could forgive them not having the knowledge, grudgingly but the lieing , BS and gaslighting is a step too far. I also now self treat with T3, (hypo) and to top it off the last GP wanted to drastically reduce my levo because TSH is suppressed, she was telling me how dangerous it was to take T3 and then actually admitted she had no idea what T3 was in fact had never heard of it 🤦♀️, I just don't have the words
I think learning to forgive is part of the journey. Erm, you cannot have bloods taken without your consent. You ask what bloods are being taken. Do not roll up your sleeve until you have been told.
You just state,
Do not test my B12. Please write on the form. Patient does not consent to B12 testing to the phlebotomist, nurse, whoever.
It is your body after all. I know little about T3 then I’d say look it’s your illness, tell me more.
Just a funny, years ago, after changing a nappy, I picked up this gorgeous baby, her head snuggled into my neck. She smelt wonderful. I automatically kissed her. My heart dropped, I stammered my apologies to the parents who thought it was lovely. I then reported myself and filled in an incident form. 🥵
I had to laugh earlier, I was wherever and needed to sit down, walking like Quasimodo, someone helped. I was asked10 minutes later, Was I ok ? Yes, it is like Multiple Sclerosis. The reply I received was, At least you are young!!
The person was wearing a name badge. I stated quite bluntly, Do you know how long it took to get diagnosed ? No, well keep your mouth shut.
Nobody actually thinks oh P.A./B12D can be classed as a ‘Traumatic Brain Injury.’
See this is a concept that no one ever discusses. I have been told for so many years, your a woman, your a mum, you work, of course you'll be tired, eat less., eat more, exercise mlore, rest more, you need to lose weight, it's menopause, well your at that age, buck your ideas up, stop being dramatic, and of course the classics, your exaggerating, your being dramatic, it can't be that bad, everyone gets tired. It really is a miracle there are not more murders committed, if we had more energy they'd be in trouble 🤔🤫
Discombobulated247 has written about her mum and then her older sister’s battle. I shall write a post on this subject. We also need to be having the conversations around the ‘D’ word.
I stopped one doctor in their tract. It was amazing what it triggered. I simply stated, I have received a lot of discrimination. I do love a bit of panic in a person’s voice.
I particularly like the work of Baroness Julia Cumberlege and I do believe that Dr Rupa Huq and Jane Hunt receive more information on this disease. Keeps me out of mischief. 🤣😈
I am fuming, bloody GP. Sometimes I don't always get the full picture during an interaction but it all gets stored, then ra ndomly appears like a video, verbatim. Tonight's showing woke me at 03.55 with a start. Haven't been able to switch off since so in the end got up for tea and toast.
So after appointment last week thought it was a 50/50 result. Got referral's to Endo and Rheumatologist, but the GP sneaked something through that I had not agreed to. She wanted to reduce Levo, I tried to explain why that was not happening. I said " I do not agree to a reduction on my Levo px, I feel better on the current regime than I have for some time. I understand you are concerned so I will take 50 mcg less on 3 days per week , Mon, Wed, Fri 100mcg other days. I do not agree to my repeat px being altered as, if my symptoms deteriorate I will adjust back upwards as needed. Blood test in 6 to 8 weeks and then discuss again. Yes my TSH is low but that is because I am taking T3 which will suppress TSH" (long explanation re what T3 is 🤦♀️), Then before I left I summarised for clarity and again said " So to clarify, I do not agree to a reduction in dose , I want the repeat PX to remain at 150mcg daily, and I am aware of your concerns ". I explained fully my SI routine and frequency, reasons for this and my ST with T3 and the justification for it, she looked dumbstruck.
So lots of red dots appeared on MyGP app yesterday and when I had time I looked to see what had been added, wish I hadn't, my repeat px has been reduced , GP has noted " Has agreed to a reduction in PX, to 150mcg/ 100mcg alternate days, to repeat bloods in 3 months, patient has very strong health beliefs" 🤬🤬🤬🤬🤬🤬
It’s in your inbox. I have a meme of the Glenda the Good Witch of the North from the Wizard of Oz which says the last person who started on me, got buried under a house.
I’m sure Discombobulated247 deserves a giggle or 2. ✨
👍🤫 don't tell everyone but once upon a time that was me 😉 I don't like conflict and spent all my adult life desperately fighting the inner urge to let fly , pre 22/20 I was a complete nightmare, when the red mist descended it was a bit well a lot scarey, think Quentin Tarantino . It is emotionally draining , just uses up all your spoons and leaves you spent. So I do try to not to go there. Doesn't mean I won't if pushed and they're pushing. I think they should be thankful I'm the person I have learnt to be
I urge UK forum members to find local B12 deficiency guidelines used by their ICB (Integrated Care board) or Health Board and compare them with NICE CKS link above.
Some local B12 deficiency guidelines are not helpful. See blog post below.
If she can't find them online or by searching forum threads here then best bet is to submit a FOI (Freedom of Information) request to ICB/Health board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
I think it might be helpful for her to join PAS and talk to their helpline. They can suggest info to pass to GP.
PAS membership is separate to membership of this forum. You do not need a PA diagnosis to join.
If her GP is reluctant to start treatment then might be worth showing them PAS leaflet on SACD. I suspect many UK GPs don't realise how serious (or pernicious) PA can be.
PAS article about SACD, sub acute combined degeneration of the spinal cord
I've written other detailed replies on this forum recently which may have other useful info.
I think I understand why she has chosen to SI. I suffered for many years and in the end was forced to self treat as NHS refused to treat me despite 50 plus typical symptoms including dementia type symptoms and spinal symptoms.
More info in pinned post "Various PA and B12D resources". Pinned posts are on right hand side of screen if on computer.
It’s a great recommendation, not being a health professional. where Pernicious Anaemia is concerned. How many PA patients have suffered and are still suffering due to Health professional’s ignorance and dismissal ? It’s a national disgrace .
It is a Public Health issue. However, on 29 March 2021, the U.K. government restructured so the Office for Health Improvement and Disparities and U.K. Health Security Agency were introduced.
Discombobulated247 and their siblings can indeed write to their M.P.s giving them a brief synopsis of circumstances. Can you imagine 650 MPs scratching their heads, saying I have had a few letters from my constituents about Pernicious Anaemia or vitamin B12 deficiency. They became really disabled and had to self-treat. Another M.P. pipes up, yes, I had letters on that very issue. So, did I. They look at each other and think, What is going on ?
M.P.s are voted into power by the people for the people. As shown in this post, B12 is required in the 300 trillion cells to make POWER
"Am I correct in believing that any future blood tests will now never result in a PA diagnosis?"
I think Martyn Hooper, the former chairperson of PAS (Pernicious Anaemia Society) had a positive result in his third IFA test which suggests that levels of IF antibodies can fluctuate.
Gastric parietal cells produce intrinsic factor (IF) and intrinsic factor antibodies attack IF.
The AMAG (autoimmune metaplastic atrophic gastritis) associated with PA means that parietal cells are lost.
If a person has few or maybe no parietal cells left then they will produce little or no IF and therefore there will be few or no IF antibodies produced.
Might be worth her discussing this with GP especially if she has gut symptoms and has been diagnosed with gastritis.
Some laboratories say to leave at least 48 hours after a B12 injection before testing IFA and some say leave up to two weeks after a B12 injection.
Some laboratories say that is is not necessary to leave any time between B12 injection and IFA test but I think the time interval needed depends on the type of machine they are using to analyse their blood samples.
Perhaps Technoid could explain this better than me.
It's possible to get IFA tested privately in UK but many NHS doctors will not accept private blood test results.
When a patients tests negative for antibodies, but Pernicious Anaemia is likely, this test can be used. 85-90% of patients with Pernicious Anaemia will have a high serum gastrin."
I've read articles that suggest there may be a genetic component to diverticulitis.
Just wondered if your relatives with a PA diagnosis had a positive IFA test and if not whether diverticulitis was considered.
Diverticulitis can sometimes affect the small intestine (think this is quite rare). The terminal ileum (at end of small intestine) is the part of gut where B12 is absorbed into the blood stream.
Elder sister and myself had positive IFA test results. I too was diagnosed with diverticulitis earlier this year. Had no idea there could be a link with PA.Many thanks for the information.
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Normal levels for intrinsic factor antibody? 
Intrinsic factor
Intrinsic Factor test after injecting B12 for 2 years ???
Intrinsic Factor Antibodies
