High B12 AND High Folate aCID - Pernicious Anaemi...

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High B12 AND High Folate aCID

Lynneat
Lynneat

b12 IS 100 POINTS FROM BEING OFF THE CHARTS. FOLATE IS OFF THE CHARTS IT'S SO HIGH. NO DOCTORS KNOW WHY. SEEN SEVERAL SPECIALITIES. ALSO I HAVE BONE PAIN IN THE LONG BONES. OTHERWISE OK. NO ONE KNOWS WHY I HAVE EITHER. IF YOUR B12 SHOWS HIGH BUT COULD BE FALSE, HOW CAN YOU FIND OUT THE TRUTH?

9 Replies
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Hi Lynneat, I'm a fairly new member but I just wanted to reassure you a bit as those across the pond may not be awake yet.

I am guessing that answer is likely no, but had you been taking any supplements or medications before being tested for B12 and folate? If yes, how long did you wait before the blood was drawn?

I had bone pain in the long bones, it was quite frightening. It was very different from my normal chronic pain and fibromyalgia. B12 injections have helped with that significantly.

After developing abdominal pain, digestive issues and relentless lack of appetite/queasiness my gastroenterologist did an endoscopy and a biopsy that revealed autoimmune gastritis (or AMAG for short which leads to pernicious anemia). (I have read that abdominal pain/digestive issues are rarely found in AMAG, but in my case it fortunately lead to the correct diagnosis).

I am certain that I have had undiagnosed pernicious anemia for at least 2 years, although my B12 and folate levels were "normal" when my symptoms began in 2015.

Do you have any abdominal pain or digestive issues?

Yes. After surgery I began opioids. 4 months now I've been off...constipation is BETTER but not gone. It could be vagus nerve damage or a permanently slowed system (Gastroparesis). UGH I don't know about b12 shots. My doctor said I'm fine as folate is a b9 vitamin and water soluable...so he doesn't care. I do! I've heard b12 can be a lie with high folate but how can I prove that? Is there another test to prove that? Thanks! NO SUPPLIMENTS so nothing there to raise folate. Not even foods that have it. Hardly any... How do you get diagnosis of pernicious anemia?

Gambit62
Gambit62Administrator

if you are supplementing then that is likely to be the reason for the high results.

If you aren't supplementing then there are likely to be genetic factors involved.

Unfortunately it isn't really to comment on whether the bone pain is related to either of the results. There are a huge number of things that could be causing the problem.

Being off the chart for folate just means that your result is outside the range that the test method and machinery can measure with any degree of accuracy.

Lynneat
Lynneat in reply to Gambit62

I'm not supplementing so I need to get an eval from a genetic doctor? What are they called so I can try to find one? Thanks. Lynne

Gambit62
Gambit62Administrator in reply to Lynneat

It isn't clear where you are - although NHS is starting to wake up to genetic profiling in relation to some conditions profiling isn't generally available. I think it is more common in the US.

You can get genetic profiling done privately and I think you can pay for a service that includes interpretation but usually the results come back and you have to look at and interpret them.

If you are speaking to your doctor then you need to ask them to do a genetic profile.

Lynneat
Lynneat in reply to Gambit62

Columbus Ohio is my hometown. Thanks....I'll try to find one locally. I have heard so much about genetic testing but basically I thought it to be something that tells your genetic possibilities...you COULD have this or COULD get that. Not what you do have. Thanks for the tip. I'll follow up. I appreciate all answers.

Gambit62
Gambit62Administrator in reply to Lynneat

there are two types of genetic variants - latent and dominant. Dominant genes will affect you whatever the environmental circumstances. Latent genes will interplay with environmental factors but how often isn't fully understood - so a lot of it is about possibilities and possible ways of avoiding them - but there are a lot of variants and many act in opposite directions so I still think we are a long way from really knowing how any individual is going to react. I'm not saying that it will give you the answer but it might help narrow it down - particularly as there seems to be a family connection.

I don't know of any family connection. I'll try to find a genetic doctor. thanks.

A doctor was supposed to respond to me from here but I haven't heard anything.

btw I eat all things but very little veggies/greens except maybe green beans in a can due to motility issues. It's not my diet causing the high folate. I wish the doctor would reply....I sent my blood work and history. I have to chase the white rabbit following a red herring as I have bone pain and no one knows why. It could be serious...or not. I need to know. Thanks.

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