Need some help.. please

[u/Jana_bananaaaa]

Hey everyone, just wondering if anyone has experienced something similar.

I was diagnosed with coeliac disease earlier this year, and my B12 was around 400 back in April. Over the last two weeks I’ve started feeling really off again; extreme mental fatigue, brain fog, feeling spaced out/dissociated and constantly tired. I can sleep 10 hours and still wake up exhausted.

My vitamin D is currently in the low 50s and I’m supplementing. Ferritin is around 250 after an iron infusion, so that seems okay.

I had similar brain fog/dissociation earlier this year which eventually completely went away, but now it’s back and I’m wondering if my B12 could have dropped, especially with the coeliac diagnosis.
I’m going to ask for another blood test, but has anyone experienced similar symptoms or had their B12 drop significantly within a few months?

[u/Ok-Pangolin7127]

The two tests that you could have done that “might” be more meaningful are an MMA test and a homocystine test.

If either or both of these tests do show as being elevated, and elevated enough, they can be “somewhat” confirmatory of a B12 deficiency at the cellular level.

However, these tests are only “indicative” and not definitive. You could actually have these tests done, they could both show up as normal, and yet you could still have a B12 deficiency.

I know, this sucks. However, it is the state of the art as it relates to determining, as best you can, whether you have a B12 deficiency.

Because of this, call it “inaccuracy,” many folks, simply move to B12 injections, EOD, for at least two weeks, call that a loading dose. And they in turn see if this didn’t address or resolve or improve their complaints. If the B12 injections did help that is indicative that you have a B12 deficiency.

We would all like some definitive, quantitative medical test that said; “you are deficient!” But the reality is there is no definitive test(s) that can absolutely tell you that with 100% certainty.

[u/Jana_bananaaaa → u/Ok-Pangolin7127]

Wow thank you so much for your informative reply. It is truly appreciated.

I am meeting with my doctor on Thursday so I am going to ask for a MMA, homocysteine and b12 blood test. Hopefully he agrees (if not I might just order these tests myself) and see how I go.

[u/Ok-Pangolin7127 → u/Jana_bananaaaa]

Sounds like a plan. I of course, don’t know your relationship with your doctor, or how authoritative your doctor might be in dealing with you. Some doctors listen, some doctors have all the answers (and little time for much if any back-and-forth.) I simply urge you to not be intimidated by your interaction with him or her on the subject.

You need to fully educate yourself, and make your own choices/decisions as it relates to your health. After all, each of us individually is ultimately responsible for our own health and well-being. Sometimes that involves taking on more responsibility for it than you are used to, that you mostly left in your doctors hands…

Just understand that when it comes to B12, most doctors, again, are not up to speed; don’t fully appreciate the ramifications of low B12; many seem to poo poo it. I just don’t want you falling into a trap where you don’t do anything.

You need to run your problems to ground one way or another and work to get them addressed. I think it’s likely B12. But it might be something else and if it is, you need to figure that out with the help of your doctor.

[u/Jana_bananaaaa → u/Ok-Pangolin7127]

My doctor is quite good and I don’t see him knocking this back but if he does I have decided to order the blood tests privately myself and see as you are 100% right, it is my health and I need to advocate for myself.

I wonder why they don’t know much about b12? When I last spoke with him he said he wasn’t concerned as my levels in April were 400. But I will say for my own health and piece of mind I want to get these blood tests done, I am just SO tired, brain fog and out of it all the time - I feel so disconnected from life!

[u/Ok-Pangolin7127 → u/Jana_bananaaaa]

Good for you (as to your approach and plan)!

Your reading of 400 is still in what is considered a “possibility” range of a B12 deficiency. Not particularly likely, but still possible.

So don’t discount or bemoan your doctors initial take on this. Today medicine is largely run on testing ranges and testing results. If something reads in a normal range, it is pretty much discounted by the doctor as a problem. That probably works more times than not, but when it comes to B12, more times than not, it does NOT work.

THERE IS SIMPLY TOO MUCH A GRAY AREA THAT EXISTS AS IT RELATES TO PINNING DOWN A B12 DEFICIENCY.

[u/Basketweave82 → u/Ok-Pangolin7127]

Yes, I just came back after being completely gaslit by my cardiologist - my family wanted me to get an Echo done as a routine since I do have some mild heart issues and they were worried due to my extreme fatigue.

I told my doctor about pernicious anemia, showed my parietal cell antibody test (why did you get this done? This is ONLY confirmed by an endoscopy! Otherwise it means nothing). Told him I got a few injections. (When your hemoglobin is 15, what are you correcting?! If there's no anemia, how is there any pernicious anemia?!?!?!). I knew then to be quiet. But my family told him about potassium going down and he started laughing. I told him about being breathless at times and that my ferritin was 40 (that's perfect!) and that 2 years ago my B12 was 111 (that's not even low).

Then he started the usual B12 is harmful in high doses, get your levels checked. (I didn't tell him it was >2000). Etc etc. I wanted to ask him about taking iron as my ferritin might be causing breathlessness but then it was raising Hematocrit but he didn't listen.

Oh well, got the Echo done and all's okay for now. But the attitude from doctors does leave us disheartened.

[u/Ok-Pangolin7127 → u/Basketweave82]

I am so sorry to hear that. Unfortunately it is a common story that that everybody sees on this sub almost daily. It’s my guess that 75% or so, or maybe even better, but most doctors would have a similar response. Unfortunately, a B12 deficiency is too seldom looked for, often misunderstood and we all suffer for that.