diagnosed with PA without IFA. Anyone else have similar experience?

[Tigerlilly81]

I was diagnosed with PA in 2015 based off my APCA positive test. But my IFA was negative. Doctor retired. New doctor did not agree with PA diagnosis and stopped injections. B12 has been getting lower and lower and am very symptomatic. Get new doctor and 2nd opinion from a hematology specialist. He said beginning stages of PA, take the injections.

[wedgewood]

Well done for getting new doctor . I hope that you get your B12 injections reinstated . It is an established fact that about 50 % of P.A. patients test negative for Intrinsic Factor Antibodies . But a competent doctor can diagnose P.A,by knowing symptoms you have, and being able to add 2+2 together.

[Nackapan]

Stupid stupid.Why if they are working stopl them

PA is only one cause of b12 deficiency .

Whatever the cause if b12 injections have been prescribed they should continue.

Very very few would choose to have these injections if not needed.

Until a definitive test available

And other tests determining the cause of the absorbtion problem or process broken we need treatment.

If proved dietary great take a b12 tableg and see if absorbed.

Stop starting treatment cruel.

Im so weary of it.

I personally am on no other medication and to date nothing else found ???

eating a b12 rich diet including meat

I wax told at several stages dietary!

Rubbish.

Never was tested for IFAB

A very low serum b12 and symptoms dictated

Gps get second opinions as they really do not know.

Also to cover their backs if 'off licence ' or a high frequency. Needed To date 2 neurologists have 'santioned my b12 prescription.

I also buy it as if need to fight again i to keep prescription.

Need b12 !!

My surgery is closing in 2 weeks .

Managed to get 6m of b12 prescribed and a blood form.

No idea what's ahead .

5000 patients scrabling to find another gp practice .

Sense would say you are allocated a new gp .

Fight your corner

[Scott-rock]

I have no IF antibodies because i don’t produce intrinsic factor period . Confirmed by my cardiologist/physician.

[Sleepybunny]

A couple of links about diagnosis of PA

Testing for PA

pernicious-anaemia-society....

I've also read that a pepsinogen test can also be useful.

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

NICE guidelines B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

Have you been tested for coeliac disease?

nice.org.uk/guidance/ng20

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more 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.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

[Tigerlilly81 in reply to Sleepybunny]

I am celiac negative for sure. Tested multiple times.

[B12life]

SleepyBunny, you always have a great set of links! love it. don't stop as it's so helpful.

Here's another reference I found after being triggered by Tigerlilly81's question.

pubmed.ncbi.nlm.nih.gov/317...

Very interesting article about percentages of people with b12 deficiency that end up with anemia and macrocytosis. Neither of which I had but this was one of the justifications used to not treat me by the docs that diagnosed me.

I think this (and other articles) point out yet again that it is a misconception that you must have anemia and/or macrocytosis in order to be considered low on b12. Also, this article reveals that what is considered severely low (78) is very wrong and should be raised to a higher number based on all of our clinically proven issues that resolve with treatment. If there is one thing I will endeavor to change, it would be to raise this level.

And my fav article about the misconceptions: ncbi.nlm.nih.gov/pmc/articl...

While we can't get many physicians to fully embrace these misconceptions, it's so good to have all these resources, and I'm referring to not just these but the ones that SleepyBunny lists.

[B12life]

Tigerlilly81,

I just notices that you are in the US. DO NOT GO TO A HEMATOLOGIST!!!!! You will get treated very horribly because you don't have cancer. They will try to get you off the injections. I went to two of them and got the same results.

Neurologists understand this better; however start with a general practitioner as they can do everything you need for B12.

Just find a doc that WILL help you.

Print out and Take that many faces of cyanocobalamin article I listed above.

But docs are too busy to read these things, so create a summary page with key points from the document then highlight those in the document so the doc can quickly scan. Most don't have time to read things so the easier you make it on them the better. Hand feed this info. This should give the doc a solid medical reference that justifies treatment.

Don't cram it down their throat, ask them if they don't mind discussing an article you found.

If they get defensive, leave and find another doc. It's like religion or politics. you won't change them.

Below are key points in those references (esp the first one)

1. You can start having symptoms at 600 and 500. That first article states this but I started having brain fog and serious back pain that after 4 years became sciatica and severe fatigue. It shouldn't have gone that far. They should have been treating me at 500 and 600 to prevent the cognitive impairment.

2. The injections are harmless, meaning you cannot overdose on them unless you have an underlying kidney or liver problem. There is one article that states the contrary, but it was not founded on a reliable study. There are other medical documents that are well founded and definitively state that b12 injections are harmless and can be done frequently as long as you don't have any underlying issues with your kidneys or liver.

3. You will need frequent injections EOD (every other day), until symptoms resolve in order to prevent the symptoms such as brain fog and pain from becoming PERMANENT. That EOD could be up to 2 years. But don't tell the docs that, just tell them you need injections EOD until symptoms resolve and reference the 1st article.

4. If they train you on how to do the injections, you can get your own b12 (don't tell the docs this or that it is your intent), and then do your own injections. So if you can't convince them to give you frequent injections, don't argue too much, just try to convince them to teach you how to inject (you are tired and can't come in weekly so you want to do it yourself.)

5. The other thing they will try and tell you is that they can test the serum b12 levels after you start the injections. THIS IS ABSOLUTELY WRONG. again, the references above state this. This is because the b12 you are injecting is going into the blood stream and so you are testing what is in the blood but not what is in the liver or what has actually been absorbed. there is NO way to test what your cells are absorbing. B12 is responsible for cell generation. Our cells (brain, nerve, etc) are constantly dying and being regenerated. The reason why we have fatigue, brain fog , neurological pain (be it back pain, numbness in feet and hands, sciatica) and muscle tightness with B12 is that the cells are dying and not being regenerated. If left untreated the symptoms can become permanent.

If the doc won't give you injections and if possible, try and find one that will.

The problems we typically run into are that the doc doesn't think you need the injections, but you do and that you should stop the injections. But it's a lifetime need if you are not processing b12 your body needs it daily or it depletes the store in the liver.

Your body needs b12 daily. you can only get it from meat. your body doesn't need much, 2.5 mg / day which is easy to get. So what is happening is either you are not eating enough meat or your body is not processing the b12 that you take orally. If you aren't eating enough meat, then you just need enough injections to get your stores back to norm and then take b12 orally; however, if you eat enough meat but still are low, oral b12 will NEVER help. Yet many docs thing some how magically it will. I ask them how did I get this low when I eat a lot of meat.

you will need injections and most likely need them for life. It's been 2 years and I still do them daily (with cyano, EOD with hydrox). Thus don't argue that you will need this for years with the docs even though you know you will, just get the injections and get them to teach you and then you can do everything on your own!

Also, folate can cause anemia. Folate is required for b12 metabolism, this is why the folate levels are important. If your folate level is good, then no need to supplement with folate. I never did because mine were normal. I just did b12. Some say you need to take more folate to process the b12. Well ok, you can try that if you are normal, just take 400mg daily or less. Taking more than 1000mg of folate daily w/o a folate deficiency, can mask a b12 deficiency.

This forum and the PAS are the right places for information. People are empathetic and informed. There are NO dumb questions.

SO YOUR NEXT STEPS ARE:

Schedule your apt, then before the apt: get the two resources read (esp the first one) and the summary page written that emphasizes the need for b12 injections despite being in range with references to the first resource/article.

Then, once you have that ball rolling for getting treatment, take a little time here and there to read the resources submitted by Sleepybunny as they are priceless.

I was bed ridden with this and am a very athletic and ambitious individual. I went from being bed ridden to back to 80% of normal. My b12 was 190. Which isn't what they consider very low but has been clinically proven to be low. The medical industry just really doesn't get that there isn't a precise low, it can vary for each individual as is pointed out by these resources

Let me know if you have any questions.

[Tigerlilly81 in reply to B12life]

The hematologist I seen was very happy to help me. No bad experience at all.

[B12life in reply to Tigerlilly81]

my experience was 3 hemotologist that were horrible. the first was mayo clinic. This doc told me b12 wasn't the issue and told me to tell him what the problem is when I do find out. Then the other two chastised me for being on b12 and told me I should get off of it.

So you are fortunate to have found a hemotologist in the US that gets it. Nice!