Help with a possible diagnosis

[Nitrojen52]

Hello all,

I’ve been dealing with extreme fatigue for years- going through tests, switching doctors, etc...

My new doctor told me a few months ago that my bloodwork has always shown low B12- with sometimes my levels being in the low 100s.

So, she started me on injections. My last one was in December. After a normal sleep study, another doctor last week had asked me if I had pernicious anemia. After researching it, I was very curious and asked my doctor to do my B-12 levels again and test me for the other indicators of pernicious anemia. My B12 came back today. It dropped 100 from my last lab in December when I was getting injections every 2 weeks for a couple months. It’s 433 now.

After looking at some of the posts here, it looks like some of my other labs might also come back normal because I started treatment already, but I’m having a really difficult time finding good information- for instance, how long would I need to stop treatments to get accurate labs to know if I have pernicious anemia? What do I need to be asking my doctor about?

Autoimmune diseases run in my family as well, but I haven’t been diagnosed with anything specific. Genetic testing showed I have the HLA-B27 gene, but I don’t know if that has any connection.

I’m feeling lost and I just don’t want to be so tired all of the time.

Any help would be greatly appreciated!

[Sleepybunny]

Hi,

Apologies for a quick reply as busy with other things.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Two B12 books I found useful

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

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

I wrote a detailed reply on another forum thread which has links to B12 books, symptoms lists, B12 websites, UK B12 documents/articles and other B12 info.

healthunlocked.com/pasoc/po...

Hopefully there will be something of interest in it for you. I'm in UK so some info may be specific to UK but probably still of interest.

I am not medically trained.

[Gambit62 Administrator]

This is a link to information on the genetic variant you mention

ghr.nlm.nih.gov/gene/HLA-B#...

it would seem to mean that your body has a tendency to misidentify and attack proteins that the body needs - which is why it would be associated with auto-immune conditions

PA isn't actually mentioned as a possible consequence but a lot of other conditions are.

You would need to be off B12 injections for 3-6 months at least for a serum based/actve B12 test to give a base line.

The current test for PA isn't very sensitive so gives false negatives 40-60% of the time (depending on the exact test method) - though the period with out supplementation is much shorter - could be as little as 24 hours after an injection, but the high rate of false negatives makes it difficult to interpret.

If you are prone to auto-immune that PA would seem to make most sense ... and it would probably be easier to rule out other causes than rule in PA - eg Coeliacs, SIBO. Autoimmune thyroid conditions can also result in problems with B12 absorption - number of possible mechanisms and they could vary from individual to individual but even then, because of the auto-immune issue PA remains the most likely explanation.