Pernicious Anemia treatment

[merfi]

Hi

I am writing to share my recent health diagnosis and to seek your advice on a more efficient treatment approach. I am a 37-year-old man who has been battling a series of debilitating symptoms for several years, including extreme fatigue, depression, anxiety, brain fog, decreased mental concentration, and noticeable tension/pressure in my hands and jaw muscles.

After a recent medical evaluation, I was diagnosed with Pernicious Anemia. My laboratory results from January 30, 2024, revealed the following:

Vitamin B12: 394 pg/ml (reference interval 232-1245)

Homocysteine: 13.7 umol/L (reference interval 0.0-14.5)

Intrinsic Factor Antibodies, Serum: 1.2 AU/mL (reference interval 0.0-1.1)

I was given the choice between sublingual B12 supplements and injections, I opted for the latter and was prescribed monthly injections of 1000 mcg cyanocobalamin. Despite expressing interest in more frequent injections to expedite my return to optimal health, I was informed that my current B12 levels did not warrant such an approach. Additionally, my request to assess my folate levels was postponed.

Following my first cyanocobalamin injection on February 8, 2024, I experienced significant fatigue, prompting further investigation. I ordered a folate level test myself and tested my b12 levels again. On February 23, 2024, the tests revealed:

Folate, Serum: 8.7 ng/mL

Vitamin B12: 449 pg/mL

I am eager to understand the best course of action to effectively manage my condition. Specifically, I would appreciate your insight on the following:

- Would more frequent B12 injections potentially facilitate a faster improvement in my condition? If so, which form of B12 would you recommend?

- Are there any additional tests or treatment strategies you would advise to ensure a comprehensive approach to my recovery?

I value your feedbacks and look forward to any recommendations you may offer to help me navigate this challenging period with greater efficacy.

Best,

[Technoid]

Fatigue following the injections could have many causes, but some things to monitor would be:

* Ensure your diet is generally of high quality to help support the healing process and obviously adequate sleep and rest (but avoid continuous bed rest if possible as it would reduce strength and fitness which could impact speed of recovery).

* Check iron as measured by an iron panel, particularly ferritin

* Boost potassium in the diet as it may be drawn on in early treatment

* Consider either boosting folate in the diet or supplementing with folinic acid (400mcg or so). Why folinic acid:

"Folinic acid represents over 90% of functional folate derivatives in plasma, and as such therapeutic uses of folinic acid have become important in modern clinical practice, especially because humans cannot synthesize folates de novo.[1] Clinicians can consider folinic acid supplementation superior to folic acid supplementation because folinic acid can reach higher concentrations in plasma, and it can function in the face of defective folate metabolism"

There is also no risk of unmetabolized folic acid build up as folinic is already in the active folate form.

ncbi.nlm.nih.gov/books/NBK5...

800mcg folinic acid example : naturesfix.co.uk/product/fo...

* Assuming you're already supplementing Vitamin D adequately, continue or increase if needed.

* Consider Creatine supplementation (5g) to top up ATP reserves, which may be drawn on when the body needs to produce adenosylcobalamin, one of the active forms of B12.

* Preliminary research indicates a possible benefit from supplementing Glycine and NAC to mitigate effects of early treatment decline but dosages have not beem determined.

*The form of B12 is unlikely to make a big difference but you could trial other forms to see if one suits you better.

* Keep an open mind about symptoms which are completely unaffected by injections, in case there are co-existing health conditions.

[J972]

Welcome to the forum. The following link from the Pernicious Anemia Society website outlines the range of tests available but it’s important to mention that the condition is notoriously difficult to diagnose

pernicious-anaemia-society....

It’s interesting that your serum B12 reading from January was in range - albeit low - was it this or your symptoms which prompted your GP to order further tests?

Regards

[Nackapan]

It's very early days .Only one injection .

Symptoms can get worse before getting better.

The regime in the UK is loadng doses of b12 6 within 2 weeks then maintenence doses .

With PA tablets won't work or sublingual.

Surprised you were offered this option.

[J972]

You might also want to trawl through this link and  Sleepybunny ’s fulsome response to another new forum member 🤗

healthunlocked.com/pasoc/po...

[am111]

Serum B12 level is inconsequential once on supplementation.

Your homocysteine level is too high, which can be affected by folate and B12. Ideally, it should be around 5. Folate is a bit on the lower side, it can be supplemented.

Regarding B12 treatment, generally a loading dose is given before monthly shots which are just maintenance. You should have been given at least a few weekly shots before going to monthly ones. I suggest weekly shots till you feel normal at which time you can go to monthly ones. Self-injections are possible if the doctor won't give you.

In any case, even with monthly shots, you should gradually recover.

Regarding fatigue following a B12 shot, this means your nerves are healing and using up nutrients from the body for this purpose. This is pretty common and a symptom that the shot is working. Nothing to worry about.

Good luck!

[Sleepybunny]

Hi,

Welcome to the forum.

Do you mind me asking which country you are in?

The reason I'm asking is that patterns of treatment and diagnostic process can vary between countries. Knowing which country you are in may help forum members to post relevant info.

A few links that might be of interest.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate from membership of this forum.

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

Thread about tests for PA/B12 deficiency

healthunlocked.com/pasoc/po...

B12info.com

Run by a UK campaigner on B12 deficiency issues.

b12info.com/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

Has useful lists of symptoms and causes.

b12-institute.nl/en/home-2/

B12 books I found useful

Published a few years ago so some bits may need updating.

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

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

If you're in UK there's a lot more info I can pass on.

I'm not medically trained.

[bookish]

Hi, with your homocysteine being too high, you may find a B complex useful as well as your B12 and folinic. The Bs work together and it has been suggested that B2, B6, B9 and B12 plus omega 3 may help to lower hcy. Not sure if any studies have been done on the individual other Bs and hcy, but it seems likely that they will also be involved. An 'active' complex may be worth considering and not too high with the B6. Best wishes

[OldmanD]

So many difference regimes for the same thing. . . . Here we get our loading every other day for two weeks. . . . . . Felt like rocket fuel with weird feeling everywhere inc inside my head. . . . . . After 5 1/2 weeks I was on my knees again. . . . . . I got another 3 jabs one week apart. . . . . . A roller coaster is what that was so any idea that monthly could be any use goes right past me. . . . . . The idea of no loading doses is also new to me. . . . . . . I hope ye get sorted but I beginning to think that those of us who suffer from B12D need way more B12 than once per month. . . . . And as bookish writes there may be connects to other Bs also. . . . . I cannot be doing without B6 especially . . . .