I recently received the book "what you need to know about pernicious anemia and vitamin B12 deficiency". I have managed to read through chapter 4 which discusses problems in diagnosing pernicious anemia. I am confused. I am in the United States and therefore trying to determine which test to request. All testing will be paid for out of my own pocket as I have no health insurance, so cost is a factor.
I understand that a test for intrensic factor antibodies that comes back negative may be a false negative 40-60% of the time. So i am considering testing for parietal cell antibodies first.
Question 1: if a test for parietal cell antibodies comes back negative is it still possible to have intrinsic Factor antibodies?
I am having additional testing done that requires that I be fasting to get a glucose level. So that leads to question 2.
Question 2: if parietal cell antibodies and intrinsic factor antibodies are produced in the gastric juices do I need to eat before having these tests done? If so how long after eating should I wait before being tested?
Thank you in advance for any and all replies
Written by
KimberinUS
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Sorry I can't really answer your question but will tell you what I've been through, hopefully it helps & someone else on the forum knows much more than I do. I'm in the US also, I've read the book also. I'm 20, I've had exhaustion, neuropathy which has been confirmed with an EMG. Mental cloudiness, pins & needles etc. My intrinsic factor has been tested twice and was normal. My B12 before any injections was 288, which is "within normal limits" My neurologist recommended B12 injections once a week for about 10 weeks, my b12 is now 1600. Since it is now summer it is hard to say if the b12 has helped the painful cold my hands & feet were this past winter. I have had every imaginable blood test run. If your b12 is under 500 this is NOT optimal. You can start having mental & physical symptoms under 300. Do not supplement in any way even with oral tabs if you haven't had any testing done yet. According to all bloodwork I do not have pernicious anemia but I do need to take folate because of MTHFR gene, so this may be skewing many of my tests. I am now trying injections once a month, possibly every 3 months depending on how I feel. I've seen 2 hematologists who claim that taking folate will not change results-this is incorrect! I'm sure someone else will post with better info than I have. I also had extreme hairloss which is a lot better now. Everyone just wants to throw antidepressants at me for depression which I still do have but it is slightly better & antidepressants don't work for me, I've even had genetic testing to see which meds should help. What are your symptoms? I'm sure whoever else replies will also ask you. I am not a vegetarian. B12 is only found in animal products not vegetables. Good luck!
Question 1) If a parietal cell antibody test comes back negative, it is still possible to be positive for Intrinsic Factor Antibodies ( this happened to me )
2) No, you do not need to fast before having the above tests .The antibodies are detected in your blood .
Be aware that the Intrinsic Factor Antibody test is notoriously inaccurate . If you test positive you do have PA, if negative you could still have PA .Much better to have the active B12 test ; unfortunately more expensive .
Ok so no need to ask for parietal cell antibodies. I will just ask for intrinsic factor test..mulitple times if i need to.
Thank you for the reply.
I emailed the company that manufacturers the active b12 machine/testing equipment. They said the testing for active b12 is not available in US, as of yet. Said hopefully it will be available in US in 2018.
I have had 9 weekly injections but last one was on 7-10-17 as i knew i was testing for ifa or parietal cell antibodies this coming week and some info says to not be injected for up to 2 weeks prior to testing.
Im still taking my multivitamin which has 250mcg of b12 but the absorbtion of 1% of that equals 2.5 mcg per day. So uhm basically just my daily need. No large amounts.
I'm in WV but was diagnosed in the UK. Never had the anti- IF not the parietal cell antibody tests.
There are also homocysteine and methylmalonic blood or urine test that some literature inficates may be a better tool. But ive not had them either.
For me the B12 blood test is all that has ever been done. Initially i was below the lower limit (i forget the exact number) so the diagnosis was straightforward.
Some labs here in the usa add a caveat to the results that 10% of the population exhibit neurological symptoms when the numbers are below 400 pg/ml.
The important thing is to get onto B12 therapy (i feel injections are the only way once neurological damage has occurred)
Then get of folic acid supplements (up to 5 mg daily - whatever you can tolerate) as well as B6 and B1. And a daily multivitamin to support the metabolism that kicks into high gear when you start on injections.
My b12 blood levels are off the top of the chart >1500 pg/ml which is where i feel they need to be to repair nerve damage as well as prevent further nerve damage. You cannot overdose on B12.
Start a logbook of all your symptoms and assess a daily score to each symptom. The repair is very slow and logbook help with short term memory loss in monitoring progress.
Also log all your food, drink and meds too see if there is a 3-24 hour delay from eating something to a symptom, or sequence of symptoms showing up.
Pain is a counterintuitive symptom that can arise from repair of nerve damage. This pain is an illusion and if you do gentle range of motion exercises and work through the "pain" you can get your brain to recalibrate to the stronger signal from the repaired nerve. This recalibration notmally takes 2-3 days. But if you can convince yourself that this pain is "good" it seems to go away faster.
Stress is a big consumer of B12 and the logbook gives you some control back and helps eliminate stress which makes the B12 last longer.
Discuss the symptoms with your GP especially the neurological ones and get him/her to buy into the logbook severity scores for monitoring. Provide a list of all your symptoms to your GP at each visit - be aware that everyone who has fought for more frequent injection has gone through the "ive got a hypochondriac on my hands" with their GP.
I'm currently self injecting 1ml cyano-b12 per week.
Do you have a diagnosed B12 deficiency? If not, what makes you think that you might be deficient? A methylmalonic acid test would would help you decide. Low B12 causes raised MMA.
If you are deficient the cause (PA or something else) isn't that important. I certainly wouldn't spend my own money on figuring it out.
I also had laughing gas during a dental visit in October of 2015, so that may be why even though my b12 test was a higher 246, in feb 2016, i felt worse than i did when my original test was at 169.
My first b12 test was 169 pg/ml in october 2014. Range 200 -1100. I was told to take a b100, which has 100 mcg of b12 daily and all other b vitamins.
I went back in feb 2016, 16 tortuous months later, for same tests, as i felt even worse by then. Result was 246 pg/ml, same range.
Doctors did not seem concerned. I was unable to think clearly, was super irritable, depressed, knees hurt, crying, no longer working.
Life kept going. I used multiple coping mechanisms to get through each day. I moved the following month, March 2016, to a new state. I used gps to be able to find my local grocery store for 8 months. My short term memory was gone! I couldn't remember the faces or names of people i had previously met up to 5 times. Let me be clear, i had zero memory of previously meeting them even after being reminded of spending time having dinners with them. These were my boyfriends coworkers and wives. Of course i acted as if i remembered once they started saying where we ate, ect. I struggled to do little things like the laundry. I know some people don't like doing the laundry but I used to find a sense of accomplishment when it was done, folded, smelled nice, put away Etc. Now it was exshauting to take the hamper to the laundry room and put it in the machine. I used to LOVE working in the yard. Mowing the grsss was awesome! I had gotten some exercise and the smell of fresh cut grass was nice. But no more. It wasnt even a consideration for me to mow the grass. Had to start paying to have someone do it and my boyfriend was angry about this as i stayed home all day. The last time i did mow the grass, i was down for 5 days, unable to do anything. I slept a min of 8 to 9 hours each night and woke up tired. I took 2 to 3 hour naps daily. I would sit to dry off after taking a shower as i couldn't stand on one foot anymore and bending over to dry my legs caused dizziness. I kept most of this from my boyfriend and definently from everyone else as this makes you seem like a lazy, crazy or both person. I considered that i might be crazy with a side of dementia.
My boyfriend got tired of dealing with me and we broke up and i moved out in May 2017. I started going to a naturalpathic doctor at the same time. Of course by then i had more symptoms. Anxiety, running into walls, thick tongue. Who knows what all issues I had. I cant remember all of them.
She looked at my prior tests and gave me b12 1000mcg to take 4X a day. Within 3 weeks my fog, and confusion started lessening. I was able to get thru reading articles on internet. I started weekly injections at the end of may 2017. After the first one i could suddenly breath better. What? I did not know that would happen. But it did. Even though my mcv was only 95.1 on my last test, feb 2016, well within the range that went to 100.
I have had 9 weekly shots so far. I want a diagnosis because i have to get a job to support myself soon, as savings is going out and nothing is coming in. The thought of trying to be "present" or "high functioning" for 8 hours a day makes me want to cry. I cant do it currently but i am going to have to soon. These are the facts.
Once i get a job, i will have insurance again. But even in America, doctors rule when it comes to requesting tests that an insurance company will pay for. I want a piece of paper that says Pernecious anemia so insurance will cover my on going injections and for my own peace of mind that im not a hypochondriac. And to explain to a company during a hiring interview, that i have been off work, for over a year, almost 2, due to a valid medical illness that has been corrected. So see, no need for the company considering hiring me to be worried that i am a lazy no good person that might quit if things are steessful at work. I want them to think, i had a medical problem. Now it is fixed. No need for them to know i still struggle.
So well there it is. That is why i want a diagnosis.
Hi Kimberinus. Everything you wrote I have been through and more. I'm in the US also and the doctor that did my testing was a gastro doctor. I had an endoscopy that showed that many of my stomach cells were gone. He then tested for IF antibodies and Parietal cell antibody and they came back positive. I started with 2 shots per week which felt like my body was jolted back to life for a couple days after the shots. Now I self inject every other day. That seems to be what I need right now. I only started injecting in March-april this year. I also sometimes go to weight loss clinics or Med Spas for injections. I have found several that are very affordable like $8 per shot. Both places use methyl b12 or hydroxo b12. Some functional doctors do shots also. Right now I'm trying to get my Dad tested as he's always had problems with b12 and his doc's don't want to run the antibody tests, so I'm trying to find them online. I found the If antibody test on labtestsonline.com but not the parietal cell test. Maybe you can use this site also.
Hi there, since this was originally posted i have been tested for H pylori, which was positive. It was difficult to get the test, as i had no stomach pain so had to argue about getting tested.
I am hoping my issues will resolve now that i have taken the massive doses of antibiotics used for treatment. I actually have stopped needing a daily 3 hour nap which is a huge improvement for me!!!
Also not dragging myself through my day.
Can thunk clearer and way less irritable.
I will be monitoring my bloods and b12 after a while to make sure my b12 remains above 500 or i will be back to injections in a heartbeat.
One test that might be worth your $$ is to have your Folate level checked.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
I'm not a medically trained person but from what you say above you are probably not folate deficient. I was just wondering if you had had it tested if and when you had others done.
Also i had iron panel done june 2017. Ferritin serum 98,range 15-150, total iron binding capacity 319 range 250-450, iron serum 68 range 27-159, reticulocyte count 1,1 range .6 to 2.6, iron saturation 21 range 15-55.
I had only had 3 weekly injections by then. I am going to have the iron panel redone as by now i should have lots more normal sized blood cells for iron to attach to and i want to make sure my iron stores remain good.
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