Recent PA diagnosis, serum levels high from oral cyanocobalamin, symptoms persist

[Greena51]

Hi folks,

47-year-old female writing from the US; so glad I found this forum.

After 10+ years of trying to get help with what I now realize were B12 deficient symptoms (mainly neurological; brain fog, clumsy, fatigue, low energy, grouchiness, sleep problems, etc.), my GP ordered a B12 test.

7/23: Results were B12 at 219 pg/mL and she suggested oral B12.

7/25: Started on 1000 mcg cyanocobalamin daily

8/31: Follow-up appt to test for cause of the B12 deficiency. Was given 2000 mcg cyanocobalamin injection. GP shared that injections may be necessary and she would prescribe syringes, needles and B12 for self-injection. Serum B12 and tests for PA were run.

Results from 8/31 visit: B12 >1500 pg/mL and positive for intrinsic factor. Diagnosed with PA with the suggestion from GP to continue with oral cobalamin and return in six months.

Early to mid September returned to my "old self" for a couple of days. Fatigue and brain fog have worsened since then, despite daily oral 1000 mcg cobalamin. Thinking that the injection was responsible for feeling better, I contacted the GP to ask for additional injections and was told the following:

"I would like to check your B12 level again before starting injections. If your B12 level is still low (or level has fallen significantly), we will start monthly injections.

Frankly most people w pernicious anemia eventually require injection B12 supplementation. Oral supplementation is much more convenient.

This is not a black and white issue. Some people absorb almost no B12, others some B12. (There are variable levels of anti intrinsic factor antibodies)

Please come in to see where you are. If you prefer, you can get an injection at the lab visit.

Once we get your results, we will make a plan for the future."

Based on 8/31 results from serum after a month of oral cobalamin, I suspect the B12 levels will still be high. I have read on the forum and linked articles that injections are necessary for neurological repair. However, I could use advice based on my specific results as well as how to discuss the topic with GP.

Many thanks

[wedgewood]

You will get more expert answers than mine, but I know how it feels when you are waiting for an answer . People over here are mostly still asleep at this time !

I also have diagnosed PA ( positive for Intrinsic Factor Antibodies ) My experience has been that no tablet , mouth spray , nose spray or patch has any effect at all , on symptoms , although they will increase the serum reading . Injections were the only help . We all need different amounts of injections , after having loading doses ( 6 over 2weeks ) There after I got 1 injection every 3 months . The symptoms returned . My doctor refused more regular injections. As we can only get b12 ampoules on prescription here in U.K. ( Same as in USA ) I have to get them from German online pharmacies ( no prescription needed there) Here we use the Hydroxocobalamin form of B12 , which is believed to be better than Cynocobalamin ( I don’t know why )

I need to inject once a week to keep well .You need to discover what you need by trial and error ! There is no danger of overdosing . I hear on this forum of PA patients who need to inject daily . Some manage on 3 monthly injections ! we are all different . There is no

one treatment fits all . But PA patients need injections FOR LIFE ! Very little research has been carried out on PA.

Also remember that Vitamin B9 ( folate /folic acid ) works together with B12 , so you need to supplement . PA patients have low/no stomach acid ( Hypochlorhydria/Achlorhydria) due to damage caused by antibodies to the parietal cells of the stomach , which produce the Intrinsic Factor and stomach acid . So it’s a good idea to take a modest multivitamin/multimineral supplement , as without a good quantity of stomach acid , absorption of nutrients from food is diminished .

Well I hope that I’ve given you a bit of useful information. Our marvellous chairman who founded PAS , Martyn Hooper , has written 3 books about PA ( (Amazon ) Sally Patcholok in USA has also written a book called “ Could it be B12 ?” Very best wishes to you and lots of 🍀

[Greena51 in reply to wedgewood]

Thank you for your quick reply. I will ask about folate as well. (Just as an aside, I realized that I wrote "tested positive for intrinsic factor" and left out the "antibody". These errors are typical of my symptoms and quite frustrating!)

[clivealive Forum Support]

Hi Greena51 the serum B12 test only shows what is swirling around in the bloodstream and not how much is actually getting into the cells and as wedgewood says above please ask to have your Folate level tested as this and B12 work together to make red blood cells.

You could also ask for an MMA test. Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Greena51 in reply to clivealive]

Thanks, clivealive. I will ask about the MMA test. I really appreciate the help and quick reply!

[Gambit62 Administrator]

significant numbers of people find that they need to keep B12 levels well above normal range to feel okay after having loading shots so whilst serum B12 is a reasonable test for diagnosing a B12 absorption problem it doesn't really mean a lot post injections and certainly can't be used to manage B12 absorption problems after loading shots.

This article talks about functional B12 deficiency - a condition that arises when B12 levels in blood are raised and the body reacts by making the process that allows B12 to get into your cells much less efficient meaning that you may have high B12 levels but not enough B12 is getting into your cells. This reaction is common enough for functional B12 deficiency to be recognised as a potential consequence of some relatively uncommon conditions that cause raised B12 levels (liver and kidney problems)

academic.oup.com/qjmed/arti...

There article from a haematologist might also be of interest to your doctor

bloodjournal.org/content/bl...

[Greena51 in reply to Gambit62]

Thanks for the link to the articles, Gambit62. I will update after my appointment.

[Greena51]

Update on my GP visit last week. First, thanks so much for the helpful advice and especially the journal article, "Vitamin B12 deficiency from the perspective of a practicing hematologist". The doctor was initially confused about my symptoms and suggested a brain MRI and visit to the neurologist. Once I reminded her about my PA diagnosis, she agreed to one shot but no more unless B12 was below 500 pg/mL. I don't know why she chose that value, but fortunately the test showed 404 pg/mL. After several messages back and forth, including the linked article, she agreed to loading shots tapering down to monthly shots for my treatment and to put off the brain scan for six months. I was trained on self-injection and picked up my prescription for cyanocobalamin, needles, and syringes yesterday. I am so thankful to have the support and advice of this forum. It is difficult to stand up for yourself as a patient but I stuck with it and hope to be back to my old self soon.