All symptoms of PA, not showing in bloodwork

[Crzygirl]

Hi, I've been tested twice for intrinsic factor, it has come back negative both times. I was told that was normal, and I am absorbing B12. I have been getting B12 injections 1,000mcg every two weeks. My B12 is now 1602. (200-1000) One week after injection so I figured it would be high. I still have tinging in hands and feet. My neuro is now suggesting injections once a month or once every 3 months. I do take Deplin as I have MTHFR gene for low folic acid. My CBC is normal, and I've had a blood test for Celiac which was negative also. But I do have neuropathy in my lower extremeties which has been confirmed with an EMG. I'm in college and was even falling asleep in class before I started injections, nothing makes sense! I also lost 1/2 my hair, and the B12 seems to have helped with that. I also take vit D, and iron (Fesol) as my iron levels were on the lower range. Does this make any sense to anyone??? Any advice would be appreciated. Thyroid and antibioties have also been checked, all normal, lower range- also had ultrasound, which showed slight enlargement with diffuse nodules throughout, and was just told to recheck ultrasound in a year. MMA is also normal. I think I've been tested for everything.....

[Sleepybunny]

Hi,

"tested twice for intrinsic factor, it has come back negative both times"

In UK, the possibility of Antibody Negative Pernicious Anaemia (PA where Intrinsic Factor Antibody (IFA) test is negative) is mentioned in the BSH Cobalamin and Folate Guidelines, a UK B12 document.

b-s-h.org.uk/guidelines/gui...

stichtingb12tekort.nl/weten...

I don't know if the possibility of Antibody Negative Pernicious Anaemia is acknowledged in your country.

Is there a National Society of Haematologists in your country, who might be able to tell you?

Martyn Hooper, the chair of the PAS tested negative more than once on IFA test before finally testing positive.

PAS (Pernicious Anaemia Society)

There may be some useful info on PAS website. PAS is based in Wales, UK but has members from around the world.

pernicious-anaemia-society....

Are you symptomatic for B12 deficiency?

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Neuropathy

There are many possible causes of neuropathy.

patient.info/health/periphe...

patient.info/doctor/polyneu...

Have you had tests for diabetes?

Might be worth posting thyroid results on Thyroid UK forum.

I am not medically trained just someone who has spent years trying to find out what's wrong with me.

[Crzygirl in reply to Sleepybunny]

Thanks for the reply, I did see a hematologist here who basically just said "Well, occasional B12 injections won't hurt, but I don't know if all your symptoms are from B12". Since I don't have any antibioties showing up, they're saying I don't have PA or an absorption problem. Especially since my CBC is not showing anything abnormal also. (i'm in the US)

[Crzygirl in reply to Crzygirl]

Sorry, I've also been tested for diabetes......NOTHING is abnormal in blood work, only my EMG.....

[Hidden in reply to Crzygirl]

Hey! Did you leave it 1-2 weeks when having your b12 injections as sometimes this can affect the results. I am convinced i have PA as my mum has it and i have pins and needles hair loss etc but all i got was tablets, having to go private for intrinsic factor test, which only has a 60% chance of showing something

[Crzygirl in reply to Hidden]

My neuro knew I had an injection the week before the B12 test & intrinsic factor. At this point I know it's only about 50% accurate so I'm just going to keep on a monthly injection instead of every 2 weeks. I just wish I could get a true diagnosis on paper! I would assume with you, since it does run in your family that you do have PA. No one in my family does that we know of. So damn frustrating! Good luck , I hope something shows up for you in your bloodwork!

[Gambit62 Administrator in reply to Crzygirl]

depending on what system wasn't working because of the lack of B12 and hence what damage has been done whilst you were deficient the symptoms will resolve on different timescales - nerve damage is extremely slow to heal so may just be a question of time.

[Crzygirl in reply to Gambit62]

I've heard it can take a few years. This is just so frustrating because now I don't know how long I'll be able to get the B12. I'm assuming my neuro will allow them monthly for quite awhile. Cannot buy without a prescription in the US, but at least the pharmacy will sell syringes with my doses so my mom can inject.

[KimberinUS]

Hi Crzygirl,

I am also in the U.S. i have read thru all of your posts and cannot find any mention of your potassium levels in your posts or any of the replies. Potassium is on my Comprehensive Metabolic Panel (CMP) but not on my CBC. That may or may not be the same for your lab results but you might check. After you receive b12 injections your body needs more potassium. The recommended daily allowance is 4700 mg, which is a lot considering my healthy diet, including a fruit and spinach smoothie was only getting me about 700 to 1000 mg per day. I only figured this out after taking b12, feeling better (not great mind you) and then getting worse. My research revealed most multivitamins only have 25 to 50 mg of potassium. I have no idea why since, again, the rda is 4700 mg. Like you, after feeling somewhat better initially, i slid back to tired, lethargic, cramping in toes, cold feet, numbing of hands, feeling somewhat like i might have flu but no fever. I take pumpkins seed oil pills which have potassium and other nutrients in them so i was getting approximately 1700 mg from them for a total of 2700 mgs daily. Still not enough. I started drinking 2 fruit punch flavor of vitamin water daily, which have 880 mg of potassium each. The other flavors of vitamin water have way less potassium. This addition got me to around 4400 mg daily and i felt better in a couple of days.

Again, this may not be your issue. Please check to see if any of your lab results since your injections include your potassium levels. If not, try and figure out how much potassium you are injesting. Mine was not enough. I get vitamin water at my local walmart for 93 cents per bottle.

I hope you feel better soon, as the doctors leaving us with symptoms is ridiculous!!!

[Crzygirl in reply to KimberinUS]

Wow! I had. I idea. I know my potassium was originally checked prior to any injections but it has not been checked since. I'll try & find what my original level was, but I will supplement with the vitamin water. Thank you so much for your reply