Pernicious Anemia - with normal B12 (NEED HELP)

[JackFruitRob]

Hello all,

I am 26 yrs old male, 185/75 with an active/athletic lifestyle.

For the last 5-10 years I have developed the following symptoms:

- fatigue, tense muscles

- heart rhythm problems (palpitations, getting exhausted fast)

- gastric symptoms

- trouble concentrating, bad memory

- insomnia (interrupted/unrefreshing sleep

- sometimes feeling dizzy/off balance

Besides the above I am eating well (and decent amounts), have a good sex drive, have obtained 2 university degrees and a high-position job, but the mentioned symptoms are just wrecking my life.

To find some answer, around 2 years ago I visited endocrinologist which made a tons of tests on me and while some interesting bloodwork appeared - the doctor did not diagnose anything endocrine system related.

Hoever, based on the blood work done and further research, I developed a suspicion that I might have pernicious anemia. Here are the related blood work results:

Regular B12 - 500 (normal)

Active B12 (HoloTC) - 150 (normal)

Anti Parietal Cells Igg - 25 (positive)

Intrinsic Factor Antiboties - borderline (value could not be determined by the lab)

On top of all that I have Atrophic Gastritis that has been diagnosed back in 2017.

I would like to understand if the blood work results that I have noted plus the Atrophic Gastritis would mean that I have Pernicious Anemia.

If yes:

1) How should it be treated if my B12 levels are OK? Don't get me wrong, I would not self-medicate, I just want to understand what is the general treatment in such case.

2) Could my described symptoms be due to PA?

Will highly appreciate your feedback on this, as I am quite desperate on how to proceed with this.

Thanks.

[Gambit62 Administrator]

PA is actually an auto-immune disorder in which the body attacks the mechanism in the gut that allow you to absorb B12 from your food - it is an auto-immune gastritis so if your gastritis is auto-immune then you have PA regardless of your serum B12 levels.

Individuals tend to maintain B12 levels at a particular point in the 'normal' range that is right for them. It is a huge range so that means there is a huge variation in the amount of serum B12 that is right for a given individual so it is possible to be B12 deficient at the cell level (where B12 is used) well into the normal range for serum B12. If you have had B12 injections then the normal range doesn't apply and serum B12 is not that useful a test, unless it shows low levels and hence that your body is removing B12 (mainly filtering out excess in your kidneys) very quickly, meaning that you need more frequent B12 injections. People who have had injections may need to maintain serum B12 levels well above the upper limit of the normal range to function.

Both the tests above in relation to pernicious anaemia as a cause of B12 deficiency are inconclusive - GPCA because it tends to give false positives and IF because it tends to give false negatives.

Assuming that you haven't had any injections or supplemented with large amounts of B12 in the past it would be unusual to be B12 deficient with the levels that you report above but it isn't impossible. Tests that could clarify are tests that look at what is happening at the cell level, ie MMA and homocysteine - both of which should be elevated if your cells don't have enough B12 but as they can also be raised by other factors these tests need to be done in a context that rules out those possibilities - most commonly kidney problems in the case of MMA and folate deficiency in the case of homocysteine.

Did your blood work show any signs of macrocytic anaemia (larger rounder red blood cells), what was your folate status - could there be a mix of microcytic and macrocytic anaemias masking each other (eg through a high RDW).

[JackFruitRob in reply to Gambit62]

Thanks for the reply, really appreciate it.

GPCA has been positive twice, so I tend to believe that it should be correct.

IF 2nd blood work will be known in 2 weeks.

Homocysteine is normal, as well as folate.

MMA tests are not done in my country, and I am not sure about the signs of macrotyc anaemia, will check.

Is there a particular treatment I would need to follow if my B12 really would be OK? Meaning - treatment for PA with normal B12?

[Gambit62 Administrator in reply to JackFruitRob]

for the most part the treatment for a B12 absorption problem is the same - B12 shots for life. Some countries (eg US) try to push high dose oral as maintenance but there is a lot of evidence pointing to this not being as effective as was thought in the past. The treatment should not be dependent on serum B12 levels.

Having normal homocysteine dose suggest that the cause of your symptoms may not be B12 - so may be worth following up on anything else that looked unusual in your bloods. If you have thyroid results you may want to take a look at this forum, particularly if the only thyroid test done was TSH - its a reasonable indicator in a general enquiry but a long way from being conclusive.

healthunlocked.com/thyroiduk

If you have PA - and they should be able to tell by looking at the stomach for the characteristic damage in the ileum - then you may want to be monitored for the development of NETS which have a small risk of becoming cancerous (a consequence of the high levels of gastrin in patients with PA).

Suggest that you talk to your doctor and try and find out more about the gastritis.

[JackFruitRob in reply to Gambit62]

Thanks for your answer.

My thyroid was checked in a really detailed manner, so I dont think there's anything to find..

[johnandjo1]

Yes, you describe me, two years ago. All tests normal but active b12 25% above range. Total ignorance from local GPs but like you sought support in this wonderful forum. I found a genetic problem in my methylation cycle. The World Genome project was only completed in 2003 and consequently information is scarce but growing. I do alternate days injections with lozenges, sprays etc on non injection days. Once the specific gene has been determined then the appropriate RNA will fill in the missing link. Like you I do have tertiary experience albeit over 60 years ago. You can do this, please do, immediately. I can help with reading and academic references to help further your understanding. Please begin injections asap

Kindest Regards Jo Suggest genomic report.

[JackFruitRob in reply to johnandjo1]

Hi Jo,

Thanks a lot for your reply.

Is this genomic something specific or more like a general bloodwork?

I will have to check if something like that is available in my country.

[johnandjo1 in reply to JackFruitRob]

Yes , its your DNA report . I did 23and me 21/2 years ago but much has changed. Suggest Googling Dna reports. I personally like Dr Amy Yasko's work and consider her to lead in this field. Suggest to seek out a coming internet program "Interpreting your Genes April 1-7" its free available 24 hrs. Your genes will never change , so this is a good investment for life. I started the PA protocol, thanks to the wonderful support from this forum, before getting into the genetics. I'm in Aus but all my genetic research is US based.

I do not have PA but a B12 deficency within the cell and the best I can do is keep the b12 level up. Although now 80 years I have had these symptoms all those years. Lunchtime in Oz.

[JackFruitRob in reply to johnandjo1]

Thanks for the follow up.

I checked the tests available in my country, and found some sketchy gene tests that couls be done - but they cost like 1000 usd, and have no guarantee that they test for what I would need.

But thanks for your feedback anyway.

[evalan21]

Did you check your magnesium level

[JackFruitRob in reply to evalan21]

Magensium levels are fine. When taking magnesium, I am developing odd side effects - i e. I cant sleep due to being too wired on (even though taking low dosage in the morning).

Have tried various forms and various brands, results are the same.

On the other hand I feel mental symptoms and energy levels improving after ~2 weeks of taking magnesium - but the insomnia/sleep aspect doesnt allow me to take it long term.