Hello. I have some questions for those that live with PA.
Can PA randomly develop at any point in your life? I’m 25, my issues started around the age of 18.
I was diagnosed over 3 years ago with a B12 deficiency of 86 pmol/L. (Range 115-1000 pmol/L) At that time I didn’t have any unusual symptoms, except for fatigue, which I have had for many years and is still ongoing.
I was tested for PA using MMA blood test, but it came back negative so PA was ruled out by the GP.
To treat my deficiency I had 6 injections over the space of a few weeks (don’t remember exactly). I was then left alone because covid happened and all clinics were shut. I was put onto a B12 supplement pill to take orally.
I had my B12 tested several times and the first one after my injections was quite high (around 300-400 if I remember), although this is quite normal. However since then (and after stopping b12 supplement altogether due to them no longer prescribing me it) my b12 has dropped, although still in “normal” range. Last time it was around 150 pmol/L.
I then ended up with a folate deficiency and was put on daily folic acid for 4 months. Folate was ok after that I think, but it made me worry about my B12 as I heard taking folic acid can mask B12 deficiency.
In the past 6-7 months I have been getting lots of tingling all over my body. Frequent pins and needles in my feet, hands, sometimes down my legs and daily pins and needles in my head. Leg pains wrist pain. This is not normal for me and it’s very concerning. I went back to the GP about it and I’ve been referred to rheumatology (dr querying rheumatoid arthritis, but seems unlikely to me). I also probably have Raynauds, as I get extremely cold hands and feet. Lots of colour changes in my hands, transparent skin during flares etc even when I’m warm. I also have had a dark brown circle around my ankle for around 5 months at least which I read could possibly be venous insuffiency, but I haven’t noticed any varicose veins etc. My symptoms have gotten 50x worse and I’m slowly declining in energy and the will to live due to pain and exhaustion.
My symptoms keep coming back to B12 and possibly hypothyroidism (family history of hypothyroidism so that’s a concern too, but TSH is normal at the moment).
My main question is - is it possible that I have PA even though my MMA test was negative?
Thanks.
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Diet is fine - malabsorption is possible. I have been to a gastroenterologist and had all tests - colonoscopy, MRI etc, as I have issues with chronic diarrhoea. But it was passed off as IBS in the end. I do try to battle that with Imodium from time to time. The stomach issues only really started around age 20 and they have gotten worse and worse since.
Medications I take: Propranolol sustained release 80mg daily (was referred to cardiology due heart palpitations and pre-high blood pressure without a cause, so on these as they make me feel a lot better)
Just recently started (in the past 6 months or so) taking Lansoprazole 30mg as I get a lot of acid reflux and heart burn, chest pain etc.
Amitriptyline 10mg on a night for chronic pain but it doesn’t do nothing, so I probably should ask the dr to take me off it.
I haven’t noticed any immediate changes from taking my medication. I’ve felt pretty much the same throughout albeit the neurological symptoms now.
As for ferritin/iron, I think this was also low at one point as the doctor mentioned it but I’m not 100% sure because they didn’t prescribe me anything or look into it probably. I don’t think I’ve even had the other tests like vit D, iodine etc. how do those relate to B12? Are they likely to be low if you have low b12?
I will try and many thanks again for a thorough response.
Ah yes that does make sense. Maybe I need to ask if I’ve had those tested as well then. As for the lansoprazole, I imagine that does happen, I hadn’t taken them for many years when this all happened, that’s only a recent thing, but it could be making it worse perhaps. Interesting about it being a symptom of it also! I also know that heart palpitations can be a symptom of b12 deficiency, I also had a really high resting heart rate but they found no cause for mine even though I’ve had the cardiology symptoms since this all began too.
your treatment is horrendous, all your doctors are doing is addressing each symptom , Acid reflux, pain, not addressing iron or anything else, ibs with imodium. This is exactly how I was treated years ago.
They are not even trying to get to the root of the Problem.
This is why so many people end up taking massive amounts of medication, which are not doing anybody any favours.
You need to try and find a doctor who will look at more than just one symptom.
Yup… unfortunately I’ve seen many different GPs and most of them just treat the superficial, surface problems like the acid reflux etc. I’ve only ever had a few GP who wanted to look into the actual cause of my problems. I really had to push and push for any kind of investigations. :/ I cannot afford to go private and find a doctor who will listen and investigate, or at least look at the bigger picture of everything combined, I’m sick of feeling ill all of the time. Every time I get a new symptom they just want to treat that symptom alone.
I can quite understand how you feel. The problem is resolving it. The acid reducing medication is the big problem, you need acid in the stomach to absorb vitamins and minerals. I hope you find some help soon.
Thr symptoms all sound very much B12 related - I also had very bad Raynauds when I became truly deficient. I'd had it on and off since Id been a teenager but by that point my hands were bright purple. Now theyre completely normal looking. So it's certainly connected to the pins and needles feeling, although rarely recognised as such.
Your level was initially extremely low. Oral pills seems an ineffective treatment but it did raise your levels. So this suggests you could absorb oral, digestible tablets. And most PA sufferers won't be able to do that.
I think it is still possible to have PA despite the tests. But you may need ongoing injections as 6 is rarely enough for most people.
Hard to say for certain. But does suggest you should find ways to keep injecting B12 since your doctor is unlikely to prescribe any more.
yes . He has had many odd things that can be classed under the umberella of connective tissue disorders. All relate back to B12.
I did post an article on this a while ago to nackapan, I will try and find information again, the same neurologist listed a list along with medication that affect absorbtion of b12.
Look under drugs that deplete b12, names the specialist and I think he also lists connective tissue disorders.
thats interesting. Yeah, I was so confused by my symptoms at the onset of illness that I thought I may have scleroderma or similar. In fact most of my symptom onset were a collection of many things Id been prone to i er the years which is what made it very hard to recognise.
However, all Raynaud's symptoms are now gone.
Why is there a drive to stop treating people for B12? If they are sick, they are sick,?
Mind you, I did notice a surgery once said that 'its not our problem if people aren't eating properly', which I thought was frankly outrageous to say. No-one should be judged for their illness, regardless of the reason. We all make mistakes or have life situations that can lead to bad habits or even addictions. We rely on public service Doctors to help us if we're unwell, and B12D is a terrible illness.
I hope a GP gets it soon as that seems the only way to wake them up
When was the last time, for instance, that anyone talking about a trendy vegan diet or recipe mentioned B12 deficiency as a real possibility ? Never is when.
If you want to help people take control of their own health, you have to give them access to the information you have.
(Well we know GPs don't have much vitamin info themselves !)
Or else teach it in schools - captive audience.
Me, I'd never even heard of b12, let alone B12 deficiency, or where to get B12 ........
In the program from last year, Tim Spector speaks widely about diet and says that, while his diet is now largely vegetarian, he does eat chicken from time to time as his B12 was falling.
Tim Spector and Food Myths
The Spark
Helen Lewis returns with a new series of interviews with people offering radical solutions - from loneliness to philanthropy, liberating women's economic potential and what we eat.
Trouble is you'd have to know about the risk of B12 deficiency to ask for monitoring in the first place, since it is not that usual for GP to add this to routine testing.
In fact, as I recall from a previous post, a GP advised in an article that GPs resist the urge to tick the B12 box !
I've come to the conclusion that B12 needs to be part of every training course for chefs.
It is all very well being able to concoct the most amazing dishes. But all chefs should have it banged into their skulls that, at least for the meals they are involved in producing, the health, the lives of their customers are in their hands. It is absolutely their responsibility.
A one-off meal with zero B12 is not the issue, of course. But it is far more important when people eat out regularly.
If the customer goes to a burger, chicken, kebab vendor and occasionally chooses a non-meat option, fine.
If the customer is a vegetarian (or vegan), that dishes ceases being a non-meat option, it stops being an option. That is it.
This applies across absolutely everyone who cooks for money. Hopefully, it will also reach those who cook for love, or out of necessity.
Listen to TV cooks and the ignorance regarding nutrition is staggering.
Even in London, there were no vegetarian restaurants to speak of and, aside from in Chinese and Indian restaurants, no vegetarian options on menus : it was cheese salad or cheese omelette if you were lucky. Not really worth going out for !
Except for one rather lovely place called Cranks, which due to massive popularity, became a chain. I still have a Cranks recipe book.
I had never heard anyone mention B12, not until I was found to be B12 deficient six years ago.
I had injections initially which raised my lvl (although not sky high as you would probably expect). After that was put on oral B12, with some breaks here and there due to miscommunications with GP, b12 has dropped since then but remains “normal”. It’s possible my “normal” is higher than the labs “normal”. Also I’m not sure if the test measure serum or active b12 or a combination, it doesn’t really tell me if my body is using that b12 appropriately. My b12 has never been higher than 400 pmol/L and that was after my injections. 😓
Yep, that’s exactly what I was trying to say. It seemed too low with injections. But they were not interested since I was in the “normal” lab range. It doesn’t seem right to me, even with my b12 dropping as much as it has even though it’s still within range and especially with the neurological symptoms popping up 😓
Yeah, there really should be a test to show up how the body is absorbing B12 and getting into the cells. I believe the serum test shows 'total' B12, so that would include everything in your system.
I think you really need to find a way to inject yourself, since Dr's will continue to rule out B12 as they always do after they've diagnosed and treated someone. It's just that the treatment is rarely sufficient for most people, yet Doctors refer to levels/numbers when in practice they become meaningless.
In essence, when Doctors do this they are treating us as robots. They think it's a simple case of getting the numbers up and don't think any more deeply than that.
I would find a way to learn to self inject and give yourself every other day injections. It can be daunting but is often the only way to recover. Some people inject every day to feel OK, even when they don't strictly have PA.
Worth looking at Wedgewood's posts for guidance on injections.
I suggest you put any thyroid results and an outline of your story on Thyroid UK forum on HU. GPs in UK often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests that they or a specialist can order.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
I should mention I had some issues with results of my FBC over the span of about a year. I had several blood tests done every 1-2 months. Low WBC and high platelet count, drs wondered if I had an infection but I hadn’t, I was fairly “well” aside from my usual symptoms. So they wonder if it could be auto-immune related, which made me think back to PA or something else. It all seems to lead to B12, although doctors never want to divulge into it more than testing and then saying “yeah it’s fine”.
Yes it’s possible to have PA without a positive MMA test. As the others have mentioned, it’s a difficult thing to diagnose - that’s why there are lots of different tests and none of them on their own can rule out completely that you don’t have it.
I get sore fingers wrists and feet if my vit D isn’t high enough.
I know you say your thyroid is normal but have you had the full thyroid panel or just TSH tested? TSH is not enough to assess thyroid. You also need to check T3 and T4. many gps can say it’s normal when it is in the subclinical range and giving symptoms.
You mention you can’t afford to go to a private doctor but could you afford a postal blood test to check your vitamins, iron panel and thyroid? I find a private blood test either puts my mind at rest or gives me evidence to discuss with my nhs Gp. They often do discounts e.g. medichecks had 20% off the other week.
I’ve had the full thyroid panel done once before I believe, but after that they test only TSH as the lab doesn’t like doing T3 or T4 without evidence to back doing it basically (so a low or high TSH). If TSH is normal they’re not bothered. I will have a look into a private blood test, I actually wondered about doing one before so it may be something I need to invest in doing at this point. Thank you. Interesting about the vit D. I don’t think I get enough of it so I will have to get it checked
MMA (methylmalonic acid) links up with B12 in the blood stream and so will build up there if B12 is low or almost non-existant. By the time you have had your loading dose, the MMA is likely to have gone back down to normal levels (barring any functional problems).
So, while it could be a good secondary indicator, at high levels, that B12 is low - or that part of the process to cell and tissue levels is malfunctioning (thankfully not common) - but MMA levels cannot tell you whether you have PA or not. It is not a positive/negative test result.
The Intrinsic Factor antibody test (or IFAb) can tell you if you have PA, but will only pick up about 50% of those who have it. Since quite a few GPs are unaware of this, a single negative result will probably convince them that you do not have PA. Martyn Hooper, founder of the Pernicious Anaemia Society, only got a positive result on the third test.
You started off with a very low B12 test result, and the loading dose of 6 injections. This will have brought your B12 levels up to a very high serum level and cleared any lingering MMA - so if this was initially high, it would likely not be after loading.
Does your diet ordinarily contain meat, fish, eggs -all of which contain B12 ? You said that last time your B12 level was checked it was 150 pmol/L (about 200ng/L), which is a borderline result to me. It is clearly going in the wrong direction.
You could have PA, but perhaps would have expected your B12 level to have dropped quicker with just tablets ? I wonder how soon after your loading injections your first blood test was taken, as "around 300-400", although normal, is quite low if soon after injections completed. It's all relative. Ask for a printout of test results - this will give you a better picture of timelines and direction of travel.
I first visited GP in 2015 with fatigue, back/left hip pain, daily diarrhoea. Nothing found except B12 deficiency. Gastroenterologists, three of them over the years since, have decided that I have IBS (irritable bowel syndrome) -which is a description for a set of symptoms, not a diagnosis. However, it is probable that having chronic diarrhoea would mean vitamin deficiencies are likely due to fast transit and malabsorption.
I also had strange "anklets" at some point: deep red rings around ankles. I remember taking a photo thinking "next time I go to see the GP, I'll ask her what this could be" - but of course never actually did. They just went away after a few days.
I also had a thumping heart, which got worse and would wake me suddenly at night. After a 4hr heart monitor, ventricular ectopics diagnosed : a condition that has no known reason for starting, and can as suddenly just stop on it's own. Although disconcerting, not dangerous - left to my GP to treat and discuss with me. I decided not to take the medication offered, and it went on it's own about 3 or 4 months later. Always worth checking cause of heart problems.
Acid reflux medication: Lansoprazole, Omeprazole - these can affect B12 levels if taken regularly over time. People here with PA often find that their reflux is actually caused by low stomach acid and so start their meal with a drink of cider vinegar or lime juice to give them more change of counteracting that. Difficult to know whether low stomach acid exists but try this:
if you get bicarbonate of soda powder (used in baking), put a teaspoonful in a small glass of water- and drink this down rapidly, first thing in the morning before eating or drinking, and wait .... you should burp a lot, as the acid in your stomach will make the powder bubble up and fizz !
You can test this out by squeezing a bit of lime juice onto a bit of the powder on a plate: watch what happens. Good way of testing if the powder is still working - tends to languish at the back of the cupboard, losing it's effectiveness and going out of date.
I have tried this test a couple of times -and have never yet burped.
It is quite a good idea to do this test with a friend or partner as a control - just to see the difference between a "positive" or "negative" reaction !
Also quite funny. That might be just me.
You have already been given sound advice on tests etc. Keep pushing for answers, even though we are living in difficult times right now. Always someone here to help: advice, support, shared stories - kindness.
thank you! Some very good useful information here. And yes, you actually jogged my memory (brain fog). It wasn’t MMA test I had now that you mentioned it. It was the intrinsic factor antibody test which came back negative. I don’t believe I had MMA done. After that they just tested B12 alone. My bad, lol.
My GP got my first test done. Not easy from primary care - it took three attempts. This because I was unresponsive to B12 injections given. Then got worse, then much worse.
She diagnosed functional B12 deficiency on raised MMA level, confirmed by the laboratory. Renal problems ruled out, then SIBO (small intestine bacterial overgrowth) - both of which can also raise MMA.
Then 4 tests from haematologists, because it was still raised, after loading injections, after two "maintenance" injections. Even after 6 months of reloading at 2 injections a week.
Finally, 1 from DNA specialists, three years down the line - by which time, it had finally dropped into normal range. Because by that time, I was self injecting at a frequency that helped me to control symptoms as best I could: every other day (EOD).
So nothing found to explain it, but no alternative condition ever found - despite many tests, many consultants. All looking at each symptom in isolation. What else can specialists do ?
Only seeing an oral medicine consultant now: burning mouth, still a daily symptom. Not dry mouth or cracked tongue, just burning. Tongue so swollen, it has teeth impressions around the edge ("piecrust" as good a description as any). Quite often and every day.
I don't expect anything to be found now - the first appointment was three years ago.
This is not the way to get answers, but really, for me, DNA was the end of that line.
Summary of BSH Cobalamin and Folate guidelines includes the phrase
" In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment "
Nitrous oxide is sometimes used in pain relief/anaesthesia. It's in gas and air mix used for pain relief in labour. Nitrous oxide turns b12 in the body into a form that the body cannot use.
Any chance of internal parasites eg fish tapeworm?
One potential sign of internal parasites is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found with Full Blood Count (FBC) results.
Just a couple of quick points, to clear up any possible confusion on these two points.
Pernicious anemia is just one of several possible causes of B12 deficiency. B12 deficiency and pernicious anemia are not synonymous terms.
Regarding oral administration of B12, the article "The Many Faces of Cobalamin (B12) Deficiency" covers this topic quite thoroughly. According to this article, it is not uncommon for people taking oral B12, even in multivitamins, to have serum B12 test results in the normal range, while cells are not getting sufficient B12. You would probably benefit from reading the article.
"The Many Faces of Cobalamin (B12) Deficiency" is easy to find, free, just by googling the title. It is one of the most informative research articles available about B12.
Both I (Age 62) and my daughter (Age 31) now have a Pernicious Anaemia diagnosis (2022) but oddly they are of a different type and took between 20- 30 years before diagnosis was made. My daughter recorded a low serum B12 and Folate but the GP decided it wasn't PA because her IFA test was negative, he did however decide that because her B12 and Folate were so low she would need B12 injections for life - I wanted a definate diagnosis to support this treatment however to ensure it could never be withdrawn.
As there is historical evidence of hereditary PA in our family and I had just been diagnosed, I wasnt ready to give up. I arranged for her to have Pernicious Anaemia Profile blood tests carried out through Blue Horizon. The IFA, MMA and HOLO tests were all negative but the Homocysteine was sky high and the folate was almost non existant. To be certain that my daughter didnt have PA caused by IFA and Atropic Gastritis she also underwent a Gastroscopy and as with the blood tests this turned out not to be the cause of her low B12.
I am lucky enough to have a consultant who is managing my treatment for true PA (100% IFA and very low B12 and low iron) and on referring my daughter to him, he immediately diagnosed her with an "Antibody Negative type PA". He also explained that the very high Homocysteine confirmed that my daughter had had PA for a very long time. Our specialist expects that as my daughter becomes older the IFA may well kick in together with gastritis (it would be odd to have different types but she could possibily have a different cause such as Nitrous Oxide which had been medically administered to her) but admits that our knowledge of B12 and PA is still in its infancy and there is much to discover.
We both suffer neuological symptoms such as yours (typical of those of us with long term misdiagnosis - chronic fatigue, fibromyalgia etc). I hope our story helps you to push on with your diagnosis and ultimately the right treatment. NICE & BNF recommend B12 injections every other day until no further improvement, then maintenance 2 monthly - although due to the severity and my age, mine has been set at once a month when I eventually get to this stage, hopefully.
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