Pernicious anemia at twenty two!!!!!

Just diagnosed with serum vitamin B12 level of 103...can it be pernicious anemia??? Scared that this condition predispose to gastric carcinoma!!!!! Plz help

[LtAngua52]

Ok don't panic, the gastric cancer is rare. Is your doctor treating you with injections? What symptoms do you have? Also, is your doctor organising tests for PA, if not why not? Have a look at the main pernicious anemia society website for information. Many people are low in b12 for other reasons than PA, for example if they have low or no stomach acid and can't absorb. Or if they are vegetarian or vegan, or been exposed to nitrous oxide.

Look at other sites too b12awareness.org and b12D.org lots of info about b12 deficiency, symptoms treatment.

Please don't worry about gastric cancer, research and learn about b12 because you will probably have to educate your doctor!

[Hidden in reply to LtAngua52]

Thanks a lot for your response....... I will be having all those tests for PA in my next visit and will let you know about the results.....

[fbirder]

Yes, Autoimmune Metaplastic Gastric Atrophy (the cause of Pernicious Anaemia) can lead to gastric carcinoids (otherwise known as Neuroendocrine Tumours or NETs). But they are pretty rare.

Even if you do develop NETs they aren't much of a worry. I should know as I have them (I am, literally, one in a million). My gastroenterologist describes them as 'indolent'. They are so rare that he hadn't seen them before and I had to go up to London to see a specialist at Kings College Hospital. He agreed with me and my gastro that the optimum course of action was to have an endoscopy once a year, just to keep an eye on them.

My own research showed that, for people of my age, the 5-year survival rate for people with grade 1 carcinoid tumours of the stomach was actually better then for those without them! I guess it's because I have more frequent monitoring so they catch anything really nasty.

To put your mind at rest I would recommend your doctor giving you a test for anti-IF (Intrinsic Factor) antibodies. If the test is positive then you almost certainly have PA. if it's negative then you may still have PA as the test gives a false negative 50% of the time.

You should also be referred to a gastroenterologist for an endoscopy. This will show if you have Gastric Atrophy. They will also take some biopsy samples, which will show if there's anything unusual at the cellular level.

But the main message is - gastric carcinoids are very rare and if you are also one in a million then they're almost certainly nothing to worry about.

[Hidden in reply to fbirder]

Thanks a lot for your reply.... I will go for the IF ab test after 2week of the completion of my loading dose of B12 as the chance of false negativity decrease after that....... Just because I am having breathlessness and belching after talking food,,,I became afraid about the gastric carcinoma..... But your reply really calmed me.......

[fbirder in reply to Hidden]

If you do have AMGA then that can cause a lack of hydrochloric acid in your stomach. The symptoms are similar to those of too much acid. Do a search in here for 'achlorhydria'.

[Mar-y in reply to Hidden]

I've never heard of testing for IF ab after 2 week loading dose injections? Did your doctor say that? If you are being treated for B12 deficiency with injections, it shouldn't really matter if PA is the cause - it's quite hard to get a definite positive as has been said already the test is not 100%.

[Hidden in reply to Mar-y]

I have read it somewhere,,, the doctor never said it.....

[Wierdorwhat in reply to fbirder]

Hi fbirder,

I realise I am replying to an old post but my reason for this search on HealthUnlocked is that I had a routine OGD (hiatus hernia diagnosed and biopsies taken) in March and got my results at an outpatients appointment early last month - the general medical specialist said he didn't know what the histology report meant and he would have to take advice, and to go back to see him in 3 months (now 2). The long and the short of it is that the report said chronic inactive gastritis, neuroendocrine hyperplasia and hyperplastic inflammatory type polypoid changes. have looked on the internet for as much info as I can but am worried because it will be 5 months in total since the OGD and I am unsure if it could progress towards cancer quickly. Also I cannot seem to find an answer re - is neuroendocrine hyperplasia the same as NET's? I am B12 deficient (diagnosed 1 year 8 months ago) and have self injected B12 since then. I asked my GP for an IF test and he said (when I didn't know much about it) that it didn't really matter about the test because the treatment was the same whether it was B12 or PA.

Did you have to have anything excised etc after they found the NET's and where in your stomach are they. How long ago were you diagnosed? I'm pleased for you that you are having regular endoscopy's that must be reassuring. As for me I am biting my nails (figuratively) with worry at the moment and will be happier when I know what needs to be done, I'll be able to cope then - I will be asking him to refer me to a specialist but if it's so rare then I may have to go up to Dublin as I live in a remote part of Ireland.

I know you can't give me chapter and verse but any info you do have would be most welcome. From 1 in a million to 1 in a million

[fbirder in reply to Wierdorwhat]

Hi,

I'm a chemist, not a biologist, so I'm going to have to do some reading. I'll answer properly sometime soon.

But the main point is-

Do not worry. If you do have NETs (and my first impression is that you may well have) the chances are very high that it will make zero difference to length or quality of life. When I was diagnosed I found out that the 5-year survival rate of somebody in their late 50s who had NETs was slightly higher than in those of similar age without them!

I'll reply in detail later.

[Wierdorwhat in reply to fbirder]

Thanks for this fbirder, and for your very generous action of doing some reading on the subject, hopefully your background will aid in your understanding of this area much more than my lay persons understanding can.

I am somewhat re assured by your post and, of course, would be relieved if it all turns out as you suggest it might.

Thanks again

[fbirder in reply to Wierdorwhat]

First off, here's a post I made last week on the topic - healthunlocked.com/pasoc/po...

That post links to a paper that comprehensively covers the topic - ncbi.nlm.nih.gov/pubmed/246...

Your situation sounds similar to mine - A gastroscopy, back in spring 2015, showed a single polyp (your hyperplastic inflammatory type polypoid changes). Gastric polyps are very common and very rarely nasty. But, they like to whip them out just to be sure (and it's a simple procedure). I also had strange histology results. When they removed my polyp they injected an adrenaline solution beneath it (to raise it up and to minimise bleeding). The doc said that he saw lots of small, white, nodules in the raised area. So he took biopsy samples from them.

The polyp turned out to be totally normal. The white nodules (invisible normally) gave the same confusing histology as before. Luckily, when they discussed my case in their Inter-Disciplinary Team meeting somebody recognised the possibility of it being a NET (or Gastric Carcinoid).

The first thing they did to check was to take blood to look for chromogranin A and gastrin - and 24 hour urine to look for 5-HIAA (NETs produce serotonin - a neurotransmitter that gets metabolised to 5-HydroxyIndoleAcetic Acid). Only the gastrin was high (and that's the cause of gastric NETs, not the result). I then had a CT scan.

Normally, that would be it. But this was my gastroenterologist's first case of NETs and I think he wanted to play. So I went for an Octreotide scan (where they inject a chemical that binds to NETs and emits gamma rays) - nothing. Then I went for a DOTATATE scan (a similar injection, but this one emits positrons and they use PET/MRI to detect it) - nothing.

Finally, I had a marathon gastroscopy, where they took over 30 biopsy samples from all over the stomach - so they could figure out the extent.

Now we ignore them except for a gastroscopy once a year with just a few biopsy samples - just to make sure they are behaving.

Reading through your account it's beginnning to sound that you may have a simple gastric polyp. Or, it may be NETs. Whichever it is - they are really not at all scary. Chill out for the next two months. When you see the doc ask if you have NETs. Whatever the response ask for gastrin and chromogranin to be tested. If the first is high it've because of your gastric atrophy. If the second is high it means they need to do some more testing to find out why.

Your doctor's opinion on IFA testing matches mine. We are both diagnosed as having gastric atrophy and low B12 with no H. pylori infection (I assume they would have mentioned that). That's almost certainly PA. Having the test and it being positive would remove the 'almost'. Having the test and it coming back negative wouldn't change anything, except it will make it easier for stupid doctors to say that you definitely don't have PA (like my idiot haematologist). Whatever happens you will still have a problem that can only be fixed by injecting the right amounts of B12.

[Wierdorwhat in reply to fbirder]

Wow, what a fantastic post fbirder, some really interesting and very useful stuff there, thank you so, so much, it really is very much appreciated.

I inject B12 every other day and have done for the past 18 months, but I know it takes a really long time of injecting to 'heal' anything associated with B12d. I got an awful lot of info from PAS when I was first diagnosed, and then took it to my GP. I was prescribed PPI's long term,(little did I know then what a bad idea this was) they even upped the strength when I was constantly sick to my stomach and unable to eat - I worked out for myself that the PPI's were the problem - I don't take them now of course.

The histology report said no HSLO's seen (which as you know is H. Pylori). I also have Hyperparathyroidism and I know that MEN 1 is associated with that, so that is a bit of a worry too, but I don't really think it's a possibility as no one in my family has anything of the sort. I had a parathyroidectomy 7 months ago (I parathyroid removed), but it may well be I have another one yet. All autoimmune conditions I know.

Some of the biopsied fragments were reviewed at the intradepartmental pathology conference and clinicopathological and radiological correlation was advised (as you mentioned above re your own experience).

I notice that you mention the Fundus in one of the links you gave however the part of my stomach that is affected is the Atrum (but I have read that neuroendocrine cells are widespread throughout the body of the stomach), and the fragment that the polypoid sample came from is the Cardia area (stomach oesophageal junction area as you know). I have read that that is nothing to worry about and that most people will have these type of changes. I had already seen the NCBI one but it's nice to know that a gastroenterologist who you see co wrote it I also have a hiatus hernia which was found by the biopsy - at my age 68, that's not surprising really

Apologies for the very long post, it's just so good to talk to someone who knows what I'm on about. Huge thanks once again.

[Mar-y]

Ah ok. I'd be interested to know if it's true. My friend likely has PA (it's in the family) but is struggling with getting a diagnosis. I have PA and was lucky to get a positive for that IFAB test. In addition to other sites mentioned above, I've found this website really helpful: b12deficiency.info