Beyond b12 Injections - What else can we do?

[anon4035]

Hello,

I've been reading a lot to better understand pernicious anemia and figure out what else might be done to improve my long term outcomes. Basically, I want to see if others like me have come up with other ideas to ensure long-term health, beyond b12 injections. Here's a few examples I've found:

- Pernicious anemia leads to an increased risk of all sorts of cancers, mainly of the stomach (ncbi.nlm.nih.gov/pmc/articl.... "The American Society for Gastrointestinal Endoscopy also considers it a premalignant condition, they suggest that a single endoscopy be performed at diagnosis, noting that the risk of cancer appears to be greatest within a year of pernicious anemia diagnosis." This leads me to think we should be getting an endoscopy when diagnosed, and most likely regularly for life. I don't know what a good frequency is, however... any thoughts?

- Building on the above point, should our diet reflect foods that have the best possible chance of limiting inflammation and stomach cancer? Based on my research, this would include things like higher acidity fruits, which may help slow H. Pylori bacteria proliferation, which has been theorized to increase the chances of getting stomach cancer. This is difficult, however, as diets that reduce inflammation (for example the Meditteranean diet) downplay meats, which give the most b12. Perhaps we don't care about foods high in b12 anymore because we can't absorb it anyway, so this matters less.

- Realizing your risk of other autoimmune diseases (apjcn.nhri.org.tw/server/AP.... I had Hashimoto's/hypothyroidism for years before my b12 deficiency appeared. Has anyone come across literature like the above link that shows associations to other autoimmune diseases? If I know what other autoimmune diseases I might be more susceptible to, perhaps there's a way to screen or look out for them more diligently.

- Getting injections more frequently. If my symptoms go away with 1x month injections, does that really mean that's the ideal dosing frequency? I wonder if say, once a week or 2x a month would be better regardless, because it can't hurt.

Have you found, or learned through your own experiences, any other things we might do to help for the long term? Thanks.

[fbirder]

Stomach cancer:

The underlying cause of PA is Autoimmune Metaplastic Gastric Atrophy. As well as making it impossible to Absorb oral B12 this also switches off the production of gastric acid. This lack of acid means your levels of the hormone gastrin will be raised. And high levels of gastrin can lead to the formation of Neuroendocrine Tumours (NETs, also known as gastric carcinoid tumours) in the stomach.

But this is rare. I have gastric NETs and I’ve only ever encountered a couple of other people who also have them.

And gastric NETs are fairly innocuous. Since my diagnosis five years ago I’ve had a gastroscopy once a year to ensure they are still sitting there doing nothing. And that is what they tend to do, nothing. They can develop into more serious cancer, but it’s rare. Indeed, when I was first diagnosed I found tha the five-year survival rate for 60 year old men was slightly better for those with NETs than those without. I guess us netters have more health monitoring.

So having PA makes you slightly more susceptible to NETs (roughly from one in million to one in 100,000). And if you do have a NET then it is almost certainly indolent.

It is a good idea to have a gastroscopy, just to see if there is anything happening in the stomach. But I wouldn’t worry too much if you don’t fancy it.

Here is a review article about NETs written by my specialist at Kings College Hospital. pubmed.ncbi.nlm.nih.gov/246...

[anon4035 in reply to fbirder]

Thank you for sharing your knowledge, this is insightful.

[fbirder]

Diet:

No reason to divert from the sensible diet:

Lots of fresh fruit and vegetables. Meat or fish several times a week. Plenty of pulses, nuts and seeds. Top up to the desired number of calories with carbohydrates.

[fbirder]

Frequency of injection:

As often as is needed to keep symptoms at bay. As you say, it cannot hurt to experiment with more frequent injections.

[Gambit62 Administrator]

Actually if you can absorb B12 dietary requirements are quite low so a diet including small amounts of meat would still result in enough B12 from diet. Too much meat in the diet is linked to other health problems.

[fbirder in reply to Gambit62]

Small amounts of meat will only suffice if they are the right kind of meat.

To get 2.5 mcg of B12 you need to eat:

13 g of beef liver.

100 g of beef tenderloin

360 g of ham or pork chops

830 g of chicken breast

2.5 g of clams

3 g of cockles

19 g of herring

78 g of smoked salmon

280 g of cod.

3 g of dried termites.

Every single day. And some sources reckon that older people need closer to 5 mcg a day.

The NHS recommend you do not eat more than 70g of red, or processed, meat a day. That means:

Eat offal, shellfish, insects or oily fish. Or,

Eat humongous amounts of chicken. Or,

Take B12 supplements.

[Gambit62 Administrator in reply to Gambit62]

both the Iwo Jima and Mediterranean diets contain adequate amounts of animal product to provide B12 requirements which is one of the things that makes them health. Western diets tend to overdo meat content so what may look to you like a little is actually okay.If you have PA then the amount of B12 in your diet is irrelevant because you just can't absorb it.