When I was diagnosed 3 years ago my B12 level was 85 I was getting IM shots daily for 5 days, then weekly for 5 months and then once every 3 weeks which is what I am currently still getting.
Symptoms I had were balance, numbness, tingling in hands and feet, I would even get it in my face, extreme fatigue, memory and comprehension issues, agitation .... the list could go on and on.
I have been to so many doctors where I live, I am in Canada, had so many tests done. Was hospitalized at one point for 11 days. They were checking me for everything under the sun, even MS. After a year I was diagnosed with Subacute Combined Degeneration of the Spinal Cord which is a result of the B12 deficiency and not being treated soon enough. Months and months before I was diagnosed I could see symptoms and was always told "Oh it must be your thyroid" (I have had hypothyroid for 26 years) or told "Oh, it's all in your head!" Even when I went to emergency a week and a half before I was diagnosed, my worst symptom of horribly off balance was said to be Migraine Aura because I had mentioned having a slight headache. Even then my B12 was not questioned or tested. I was sent to a Stroke Clinic for a consultation and the neurologist there put me through every bloodtest available (seemed like it to me) did we find my level at 85.
Still to this day I fight with doctors!! My B12 level as of yesterday, after 3 years of the injection therapy I mentioned above, is 269 which is fabulous but certainly not where I think it should be. I also am dealing with my Thyroid now being Hyper instead of Hypo (it has been out of whack for the past 3 years) and my Ferritin is at 6.
Do I have PA ....... again, not sure, I am confused. My GP dances around that idea. He says I don't have it because I have not been anemic. 2 other doctors I have seen in the past, one an emerg doc says I do! I have had tests done for it. That was 2 years ago. Antiparietal cell antibody positive. IF tested negative. Is there a need to do the bloodwork again with my Ferritin being so low, again????
To this day I still live with issues. I walk with a cane due to my unsteady gait, my feet are the worst with numbness, tingling where often I walk clumsily, stompy so I can feel the what is beneath me. My vibration sense is minimal. I still get fatigued and deal daily with the memory and comprehension challenges. I go to Physiotherapy in hopes of relearning my balance and to try and strengthen my muscles.........
After all this time, I still search. I look forward to reading and searching on this site. It is a breath of fresh air!
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mommer
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Dear heaven what a story but not uncommon, alas. It does not matter whether you have classic PA, caused by Intrinsic Factor antibodies, IFab test misses about 20% of those tested, not reliable. Your positive test for antiparietal cell antibodies means that Intrinsic Factor is not being produced, where the IFab means IF is being attacked. No difference in effect, B12 deficiency is the result. What form of B12 is used by Canada for injections? What is your folate level? Please give units used to measure and ranges used.
Joining entitles access to helpline, informative downloads. PA Soc. started by Martyn Hooper who has a similar story to yours, wrote book: "Pernicious Anaemia: the forgotten disease"
he also does not "hold" injected B12 for long enough has infusions like many other people here.
If you have not read "Could it be B12" by Sally Pacholok and Jeffrey Stuart it is well worth it as widens understanding.
Many people on the PA forums use sublingual B12 to maintain B12 between injections. Although you are having 3 weekly injections which have only got levels up to 269, sublingual might just help you increase B12. Worth a try! So here is a link to the best sublingual B12 form, methylcobalamin, sold by the Canadian Amazon. Methylcobalamin means B12 that is ready methylated for the body to use, does not have to go through the methylation process using folate which other B12 forms, as cyanocobalamin and hydroxocobalamin must before body can use them.
If you do want to try this, then the tablets must be taken by holding under the tongue for about 20 minutes allowing them to dissolve slowly and be absorbed straight into the blood stream via membranes under the tongue. To counteract the low absorption rate you will need about 5 or 6 tablets a day, that is 30000mcg daily, the Dutch regard this as the equivalent of 1 or 2 injections a week. This worked for me when I was refused treatment despite being below the NHS range and having 28 awful symptoms, tingling, shooting pains, spontaneously twitching muscles among others but I realise your problem is different. Still, worth a try.
Or you can learn to self inject as many do and give yourself even more frequent injections, I remember one woman has to self inject every other day, all the information is available from the PA Society.
Please get someone to take your ferritin level of 6 seriously. Ranges differ from one place to the next, but the lowest low end of the range that I have seen anywhere is 10. Probably your levels need to be over 22 at the very least and I'm being quite conservative about that number.
Low iron causes fatigue and poor concentration. When it's more serious, it causes diffuse hair loss, restless legs syndrome and more - and all of that can happen long before anaemia sets in. There's a good page on patient.co.uk about non-anemic iron deficiency.
Also, B12 deficiency masks the effects of iron deficiency on the red blood cells.
Agree re: the importance of methylcobalamin. It's the form of B-12 your body needs to help heal the nerve damage. Our adult son spent months with similar symptoms, similar hospitalizations, all the tests, MRI's, nerve conduction studies, etc. They diagnosed SCD and peripheral neuropathy (which really isn't a diagnosis, just a statement of condition). They then thought the SCD and neuropathy were due to CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). He ended up in a wheelchair since he couldn't walk. They wanted to start IVIG treatment-- which is a crazy expensive IV treatment with significant side effects.
At any rate, it was in fact a B-12 deficiency, not CIDP (in his case, brought on by use of Nitrous Oxide). We got him on the megadoses of sublingual methylcobalamin, and he showed some improvement. Then we purchased injectable methylcobalamin, and he started injecting 1500 mcg daily himself, subcutaneously. He's been on daily injections for about 3 months now; he's ditched the wheelchair, ditched the walker, and rarely uses his cane anymore. Still has some unrepaired nerve damage in one foot, which results in a slight limp, but he's 90% better. Goes for walks, rides his bike.
We, and he, had to take control of his health and treatment, as the doctors were dithering. We'd read "Could it be B-12" and everything fit and fell into place.
An interesting bonus is that the methylcobalamin acts to enhance mood, gives energy, and helps with depression-- he notices the difference in just a couple hours.
There's no toxic level with B-12, your body pisses away what it can't use. So I don't see any downside to trying it-- initially with the sublinguals, since they're widely available, then with the injectable methylcobalamin. Try it for a few weeks, and see whether it helps. If not, maybe your problem isn't a B-12 deficiency. If it helps, stay with it.
You probably won't be able to get your MD to give you daily injections of methylcobalamin (it's called mecobalamin in some countries). We bought ours through Trim Nutrition in Florida-- they use Nutrex Pharmacy, and their doctor issues a prescription. Concentration is 10,000 mcg/ml, and the vial has 5ml, so it's about 35 doses at 1,500 mcg per dose. Runs about $160 as a kit with syringes, so not cheap, but worth it if it helps someone take control of their health, and perhaps stave off permanent nerve damage. It's been a godsend for us.
Here's the link. I don't know whether they ship outside the US:
One final thing-- methylcobalamin vials need to be stored in a cool, dark place or they'll lose potency. A refrigerator is recommended. Even then, vials have a shelf live of just a couple months.
Thank you all for your responses!!!!!!! This is the most information that has been put in front of me for 3 years!
Nostoneunturned ....... We have, and I get, Cyanocobalamin for injections. Methylcobalamin for injection is not available in Canada. I just inquired at a pharmacy down the block this past weekend and no, not in their system as available. I am not a member of the PA society. I have read and still have a copy of "Could it be B12?" I should dig it out again!
My Folate level currently is 29.7 nmol/L. Now looking back, that is different than I can see in my records of bloodwork. I can see when I was diagnosed with the B12 deficiency the Folate level then was >45.0 nmol/L. So what I am currently is low??? My Folate is decreasing???
Just adding, my thyroid is at 0.03 mU/L. Which means I am now, for the moment, hyperthyroid. So out of whack!!!
Poing ...... My doctor has asked I come see him about my Ferritin and Thyroid levels. I will be approaching him with some questions for sure!!
I am wondering with the Ferritin so low, should I get checked again for PA???
Sblake7 ....... how wonderful about your sons progress!!! I do still walk with a cane but it is a great improvement when I had to use a walker also.
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Pernicious Anemia with worsening neuropathy. I'm new here.
What is the best next step please?
CFS now B12D - what next?
Thinking of self-injecting
