I shared a couple of times here before and a member here explained to me that I do not have PA. I'm not sure that I'll be well received here now but I am just so miserable I really would like to share. I know a lot of members here have many of the same symptoms I'm experiencing.
I was told I had PA and given injections about ten years ago. But the doctor didn't record the diagnosis on my chart or explain anything about PA to me. Just that I woudn't absorb supplements and needed injections immediately. I think I got two injections. The doctor moved away and that was it. I've suffered for years with so many symptoms of unknown cause, diagnosed with fibro, B12 repeatedly coming back low (I'm vegan so despite my best efforts I suppose that's why) I am now being treated for lyme disease. I recently read about PA again and realised it might be worth looking into why I had been given this diagnosis so I went back to a doc. I took sublinguals for a few days before my doctor ordered the serum b12. It came back as 800.
So I've been told I don't have PA, and the docs say I'm fine. But I noticed more hair is falling out than normal, my skin is really dry and flaking off in random patches, I'm nauseous, dizzy, weak, breathless and have other digestive problems.
I know many things can cause these but I just feel frustrated. I got so hopeful that maybe I had found an answer to years of suffering and that my doctor would work to try figure out why I had been diagnosed with PA so that we could absolutely rule this out.
My understanding was the serum test wasn't really enough to go on but I am sure I just am not understanding something or other.
I feel like a bit of a fraud posting here but I just feel so unhappy. I wish I could get some answers. I wish I could get a medical degree and maybe then I could figure it all out myself.
Any thoughts, advice, support appreciated. Yeah. Thanks if you made it this far!
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MariaMe
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Please don't feel like a fraud - this forum is intended for people who are trying to piece together the answers for their health issues and you should feel able to post your questions without worrying about negative responses. If a GP told you you have PA then that seems like you have already had a diagnosis? Its a shame you had your most recent test after taking the sublinguals because no doubt your GP will now conclude you do not have a deficiency.
Out of interest - which brand of sublinguals were you taking? It sounds like they have been effective in raising your blood levels of B12.
My understanding is that its possible to have a functional deficiency - ie where you have evidence of B12 absorption in your blood results but something is preventing your cells from using the B12 adequately. I'm not sure I understand it fully but I believe the treatment is the same as for absorption related deficiency - B12 injections.
As I understand it, if your cells are not using B12 adequately then your methylmalonic acid (MMA) levels increase. The MMA test is usually only available after a specialist referral but you can order one privately from medichecks. We recently got one for our daughter whose Serum B12 levels were 315 (so well into the normal range) but her MMA reading came out very high, suggesting B12 deficiency. Now the challenge is to get our GP to prescribe a suitable treatment plan.
MMA is quite sensitive to recent supplementation so you might want to stop supplementing before you do the test. If you have a true deficiency then my understanding is that this will show in the MMA result, even if your blood serum levels are "normal".
Thank you very much for you kind response. Yes but with no record of the diagnosis on my medical record it is not much use. It only states that I was given injections. Which I suppose might in itself indicate something abnormal as tablets might be the standard first approach?
As for the tablets - they were from Solgar and kept right under the tongue until they dissolved. I took 1-2 a day for about a week before hand.
Thank you for the information. I did consider going privately as my GP doesn't seem interested. I have had some blood taken by my consultant recently. I'm waiting to see if he actually took B12 as I went on a big rant about my concerns to him! Hopefully he did and it will be interesting to compare them with the GP ones which were taken two weeks before.
Yes I know which is why I still went and mentioned it to a doctor. But then the frustration was that the doc didn't seem to think it was a big deal so it reinforced what I was told here!
I will have a look at your post. I appreciate you sharing the link!
Sometimes the stress of wanting a Dr to listen is as equally as painful as your symptoms.
In the end I gave up on the GP and took back my power and treated myself. I know my own body so i figured out it couldn't harm to experiment with a vitamin/mineral that we need to keep functioning as healthy human beings.
So I self inject, informed my GP of what I do and their response was zero lol. I actually emailed the Dr office so it was a written record for future purposes if ever needed.
B12 is not a drug and you cannot overdose on it. It is merely needed to help one survive.
I had severe
Headaches
Dry skin
Confusion
Pins and needles
Forgetfulness
Muscle weakness
Breathless only walking and I was previously able to run 10k a few times a week
Fluid around my heart
Etc etc and I'm only 39
The dr did soooooo many tests and scans and the only thing that came back to be addressed was low B12 so for me the answer couldn't be more clear.
Does that mean I have PA, I have no idea but it does mean something mechanically in my body is not working as efficiently as it could be, so I give it a help in hand.
Dont be afraid to not know the definite answer to your b12 deficiency, just know you have it and it can be treated.
Yes it's scary taking back your power as we are led to believe that a GP knows best and come to think of it politicians also but look at the state of our country.
So my advice would be.
Experiment with B12 injections and look forward to a brighter future.
Being vegan would result in a dietary deficiency if you didn't supplement B12.
However, being vegan doesn't make you immune from PA/a B12 absorption problem so you could also have developed PA meaning that oral supplementation would resolve your problem anyway.
I agree with the doctor that said you do not have PA.
You do (did?) have a B12 deficiency. But that can be explained by your vegan diet. When you did take B12 supplements your B12 level rose, which strongly suggests you do not have PA. The earlier doctor probably does what many people do and uses 'PA' and 'B12 deficiency' interchangeably, which is why he diagnosed PA when he treated your deficiency.
Keep taking the oral supplements and see what they do to symptoms. They are obviously being absorbed. It can take quite a while for symptoms to abate, especially after a prolonged deficiency.
If that doesn't help then I would get a test for methylmalonic acid (MMA). If the doc refuses then it's not horrendously expensive to get it done privately.
Thanks for your response. None of the doctors actually said I didn't have it, but like you that they didn't think it likely I did. I have been vegetarian eating lots of eggs etc, orally supplementing and still get low serum B12.
Sorry to ask when you've already explained so much - but could you clarify for me what happens with sublinguals? I've read that the sublinguals can raise the serum levels even in individuals with PA but that this does not necessarily mean that this means all of this B12 is being taken up and used by the body. Is this correct?
I have been wondering if I should just supplement or wait and go and get active B12, IF antibody test done privately.
And yes I did wonder if the doctor did actually misspeak when she told me I had PA. Wouldn't surprise me. But I think she also did an IF antibody test too which came back positive. But again no record of it!
Sorry for the scattered response. My brain is struggling to wake up.
Sorry I have just seev you have explained this on another thread (and probably numerous others) that if a person takes sublinguals and their serum levels rise they do not have PA.
I just wonder why there seems to also be conflicting information on this...
There is lots of confusion because people want it to be true (especially the people who make sublinguals). The studies I have seen show that the same amount of a sublingual dose is absorbed as in an oral dose.
If you give a normal person 1000 mcg of oral B12 they will absorb about 10 mcg. This is because the absorption of B12 bound to intrinsic factor has a limited capacity.
Some studies say that, if you give an oral dose of 1000 mcg of B12 to somebody with PA then they will absorb about 10 mcg (1%)via passive absorption.
But most of those studies aren’t done in people with PA. They’re done in people with low B12. Which might be dietary, or caused by PPI or metformin.
If 1% is absorbed passively then you’d expect 2% to be absorbed in people without PA (1% passively, 1% via IF). But they, too only absorb 1%.
If you give people without PA a 1000 mcg sublingual dose of B12 then they will absorb about 1%. You will be told that this is all absorbed sublingually. But surely they should absorb 3% (1% sublingually, 1% passively in the gut, 1% via IF).
Whenever you give people without PA 1000 mcg of B12 by any route they absorb 1%.
So when they do tests on people who are supposed to have PA and they, too, absorb about 1% then alarm bells should ring. There is something wrong.
The obvious explanation is that those subjects supposed to have PA don’t.
There’s other evidence.
If B12 could be absorbed passively across biological membranes then we would all take B12 suppositories. Absorption is greater the longer the drug is in contact with the membrane. With sublinguals it’s a couple of minutes, at most. But a suppository will have the B12 in contact for a many hours. You could get about half of a 1000 mcg dose absorbed. I’m sure I’d prefer it to having to do injections.
But nobody has successfully developed a B12 suppository. Why? It would earn them a fortune if everybody replaced their B12 injections with a weekly suppository. So why is it not available? Because they done work. Because B12 cannot cross biological membranes without help.
Although never a vegan, I had been a vegetarian for about 35 years when I was found to be B12 deficient. I'd never even heard of B12 then.
When I'd had my loading dose (6 injections in a month, I think), I was then on a maintenance frequency of 1 every 3 months. This caused rapid deterioration, and my GP then got my B12 and MMA tested : my B12 was through the roof (>2000) and MMA raised, so diagnosed with functional B12 deficiency by GP, confirmed by the laboratory once renal problems ruled out. I then had reloading: 2 injections a week for 6 months (when I started getting worse again).
I self-inject now, as I was sent to various consultants who have not agreed with this diagnosis, or have been unable to find evidence for it, but have failed to find evidence for anything else either: small intestine bacterial overdose (SIBO), Coeliac disease, bowel cancer etc. My GP knows what I do to minimise symptoms, and is aware that it works. I still believe in her diagnosis, and she is starting to believe in my solution (frequent injections).
It is not a miracle cure, I'm not back to my old self, but I'm able to work at least - for 2 days a week, anyway. I am still aiming for a symptom-free day, 4 years later. I'm expecting it any day now, in fact !
My ferritin and folate were low end of range, and still would be probably if I did not supplement both. Despite my diet, which is pretty much all ferritin, folate and B12, although still a vegetarian. I have osteoporosis of the spine- which means I get vitamin D tablets from prescription. These: ferritin, folate, vitamin D- and thyroid seem to be the most frequently affected alongside B12 deficiency.
All of the tests, scans etc I've had: all NHS. Including the 5 MMA tests (all raised).
Don't give up hope. Whatever this turns out to be, it is not your fault and it is not imaginary. Always ask for a printout of blood test results. Look at direction of travel and patterns. Record symptoms daily: frequency and severity. Take photos of any visible symptoms. Take photos and records with you to appointments. Take my best wishes.
The intrinsic factor antibody test (IFab), as Sleepybunny has written above, is unreliable as 40-60 % of those tested who have Pernicious Anaemia will get a negative result. Martyn Hooper himself had to be tested three times to get a positive result. Once you do get a positive, it is seen as a PA certainty ( 95% ).
The catch here would probably be the likelihood of someone getting a GP to agree to retest at all after a negative result.
There is also uncertainty surrounding the research on whether pills are fine or not: in fact this was discussed at the recent Pernicious Anaemia Society Conference. In the feedback posts from fbirder , I believe one of the speakers called it "rubbish" ! So maybe medical science has more work to do there first.
I agree with you about recommending Martyn Hooper's books; maybe we should all give a GP a copy for Christmas ?
I don't think that any of us are qualified to diagnose you with or without PA. I have tested positive for intrinsic factor antibodies and was diagnosed with PA in Sep of 2018. Before the IFA test, I had been taking oral B12 for about six weeks due to a low B12 reading (219 pg/mL). My B12 at the time of the IFA test was >1500 pg/mL. This level was back down to 440 pg/mL after three weeks of stopping the oral B12. Clearly, I am able to absorb some B12 even with PA. My doctor said that there are varying levels of IF antibodies and that it's possible for some patients with PA to absorb some B12 orally.
My symptoms persisted when taking oral B12 and I was able to convince the doctor to prescribe loading doses. I continue to have shots every four days. If there are neurological symptoms, I believe this is the recommended treatment. My symptoms are much improved.
It seems like you may have tested positive for IFAB at some point. Oral or sublingual B12 may be absorbed to some extent in your body (like it is in mine), but if what you need is neurological damage repair from a long-term B12 deficiency, then injections may be the fastest route to recovery.
Just wanted to come back and update this thread with a thank you to all those who took the time to share personal expriences and encouragement and to explain the science behind all of these tests etc. I really appreciate it!
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