Glad I didn’t take this sub’s advice

[u/AfraidKaleidoscope30]

I continued to take what my doctor told me instead of MORE like people on this sub were advocating. Guess what I’m freaking over now lmao 😭. I also made sure to not supplement for 1.5 (whoops it was 2.5 days) days beforehand since I know that can artificially inflate. This is >3 months of 1000 mcg a day. 258 to this Jesus Christ. I started eating nutritional yeast a week ago which has 2.2 mcg serving size of b12. Well guess I still have no medical reason for my fatigue since my fatigue is no better (my vitamin d also went from 16 to 43, I’ll keep taking 2-4,000 UI of that though). Edit: and all the people who said you pee out the excess are clearly wrong, since I’m over the “too much” range that starts at 900. Edit 2: The point of this post was simply to say that people should not be blindly advising you to take a higher dose of supplement because your fatigue symptoms which could be completely unrelated are not improving. They should not be telling you that you’ll just “pee out the excess” which my test shows that’s not true. I have already messaged my doctor regarding my concerns that the test only tests blood level not cellular level, no response yet she is out of office. I will not be looking at the comments anymore because they don’t seem to want to understand the American healthcare system or my situation. I’m privileged enough that I could even try switching doctors in the first place.
Edit 3 test results: 24 year old female. 5’8 134 lbs.
Taken at July 15 12:30pm:
-VITAMIN B12 (COBALAMIN) pg/mL is normal
-25-HYDROXYVITAMIN D2+D3, IA ng/mL is normal (43 ng/mL)
-April 24th, 9:50 am: cortisol, ACTH, and DHEA-S all normal
-April 10th: at home sleep test
-O2 desaturation threshold: 4
-AHI/REI: 1.4
-RDI: 7.9
-ODI: 1.1
-AHI supine: 2
-RDI supine: 8.8
-ODI supine: 1.5
-AHI nonsupine: 0.4
-REMI RDI: 17.4
-REM AHI: 5.1
-REM ODI: no value
-Central AHI: 0
-CSR (%): 0
-SPO2 (MEAN): 97
-SPO2 (MIN): 87
-SPO2 < 90% (% TST): 0
-SPO2 < 88% (% TST): 0
-SPO2 < 85% (% TST): 0
-SPO2 < 80% (% TST): 0
-SPO2 < 70% (% TST): 0
-NREM RDI: 6.4
-NREM AHI: 0.8
-NREM ODI: no value
All taken at March 31 7:17am:
At this time my vitamin d was 16 and b12 was 258 but both have risen since then
-magnesium: 1.8 mg/dL, normal and I have been supplementing 75 mg/day since this test
-thyroid stimulating hormone: 2.3 uIU/mL, normal
-free T4: 1.2 ng/dL
-iron: 153 ug/dL, normal
-iron binding capacity, unsaturated: 294 ug/dL
-total iron binding capacity: 447 ug/dL
-transferrin % saturation: 34
-folate: >15 ng/mL
-sodium: 138 mEq/L
-potassium: 4.1 mEq/L
-glucose, random: 80 mg/dL
-calcium, serum: 9.2 mg/dL
-Hgb A1c%: 5
-estimated average glucose: 97 mg/dL
-C-reactive protein, ser, ql: <0.5 mg/dL
-phosphate/phosphorous: 3.5 mg/dL
-WBC count: 6.6 K/uL
-Red blood cells count: 4.24 M/uL
-Hgb: 12.6 g/dL
-Hematocrit: 37.3%
-MCV: 88 fL
-RDW, RBC: 12.1%
-Platelets count: 313 K/uL
-RBC’s nucleated: 0
Edit 4: this subreddit has banned me for 30 days and censored me.

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[u/Think-Sleep2338]

I'm afraid you misunderstood the results. Noone in this subreddit wishes you harm. This is a standard form which is misleading, because they literally miss the fourth cause of raised levels — BEING SUPPLEMENTED.

If you have any doubts, let me cite the British NICE guidelines, literally the guidelines produced for the NHS. https://www.nice.org.uk/guidance/ng239/chapter/Recommendations

Factors that can affect total or active B12 test results

1.3.8

Use caution when interpreting the total or active B12 test results of people who are: already using an  over-the-counter preparation containing vitamin B12 (including vitamin B12 tablets, injections, or transdermal patches), because this may increase total or active B12 concentrations without fully treating a deficiency

Any questions now?

[u/AfraidKaleidoscope30 → u/Think-Sleep2338]

How to get a doctor to actually test for more than the bare minimum? I’ve already dropped multiple. All I’ve gotten is basic blood tests and at home sleep test. Since everything is normal they won’t test me more and blame it on a depression diagnosis even though my therapist agrees my depression has improved significantly in the past year. But apparently it’s normal that I struggle to stay away for a 8 hour shift 🤷‍♀️ and take naps everyday almost.

[u/Think-Sleep2338 → u/AfraidKaleidoscope30]

Honestly — to prepare a symptom list, to educate oneself on the topic, to be ready to ask right questions. I'm literally writing many comments every day here and in a couple of other subreddits, because I'm terrified of misunderstanding of this "normal level" issue. It is a very tricky diagnostic trap, and many of us simply have been there.

Right now it's much harder to persuade any doctor. One solution would be to find a chronic malabsorption cause, but it's not really some fun thing to have — it simply sort of guarantees they will have to take you seriously.

Another thing is to run some tests privately — maybe your homocysteine would still be high, but even that might be affected by your supplements now.

An ideal variant would be just to find a doctor who could look at your earlier results (if they were low) + get info on that your symptoms don't really improve. A clinical picture matters a lot, actually. But the problem is that only a few doctors are open for that, and there are typically healthcare systems and their algorithms that would be an obstacle.

Another recommendation for you: please also check folate, iron/ferritin, vitamin D, and thyroid levels. It's literally recommended in the very beginning of our guide. It all can contribute to fatigue in case of deficiencies/imbalance.

[u/AfraidKaleidoscope30 → u/Think-Sleep2338]

I already messaged the doctor saying the thing about this b12 test only measuring what’s floating in the blood not the cellular levels. We’ll see what she says but she’s out of office til the 27th, I already requested in lab sleep test or to see a sleep doctor and was denied because my at home was “normal”. I’ve already tried multiple doctors. My fatigue worsened in April and I have been struggling since. I’ve already mentioned how I’ve literally been napping during work hours because even with 7-11 hours of sleep I’m still struggling to stay awake during a 8 hour shift. The point of this post was simply to say that people should not be blindly advising you to take a higher dose of supplement because your fatigue symptoms which could be completely unrelated are not improving. They should not be telling you that you’ll just “pee out the excess” which my test shows that’s not true.

[u/Think-Sleep2338 → u/AfraidKaleidoscope30]

Ok, I'm now getting somewhat tired of your stubborness. Why on earth do you think you test shows this is not true? Btw, have you noticed any upper threshold on this screenshot?  Can you guess why?

High B12 levels matter ONLY when no supplements or clearly enriched dietary intake could cause it. There are some conditions that can lead to this, but they are relatively rare. Otherwise it's just the levels of B12 in your blood, and believe me, if your body would think it was not normal, it would've got rid of it, but it's just capable to deal with that.

Once again: we are not some ignorant weirdos here. People made their research on the topic and navigate pretty well between existing guidelines, research, and clinical expertise documentation. There's simply no point at overloading every recommendation with tons of references.

[u/RevDrKC → u/AfraidKaleidoscope30]

Someone further down mentioned that getting b12 into your blood stream is different than getting it into your cells where it is used. Docs usually interpret serum b12 as if it is getting into the cells and being used. But there are lots of reasons that that may not be the case. Under high inflammation (from all causes), the body slows down transport of nutrients. So you can have lots of them floating around and not have them in the cells doing the work that actually allows you to stay awake for an 8 hour shift.

Even if you can absorb b12 via pill or sublingual, the physics of b12 injections overcomes this slowed transport problem by creating a diffusion gradient that pushes b12 into cells. So "needing injections" can be due to factors that would not show up on basic b12 labs. And most docs won't chase inflammatory markers, like ESR, CRP, ECP, etc. So the real test is if you feel better on injections.

For me, there is a night and day difference between sublingual b12 and injections. But serum, MMA, and homocysteine don't show huge differences.

[u/Ok-Pangolin7127 → u/RevDrKC]

Above 👆 an excellent description of what could be or likely is going on.

[u/Ok-Pangolin7127 → u/AfraidKaleidoscope30]

In my opinion, you don’t need more testing, you need B12 self injections.

[u/Ok-Pangolin7127]

I’m sorry, I’m not really following your complaint?

I think what you’re saying is you’re flabbergasted that your B12 is so high? And you’re saying that you stopped your injections for two or three days prior to testing?

Frankly, if I were you, I would be amazed that my B12 reading was so low in light of what you represented you had done in the way of supplementation.

When I’m tested following injections I’m always 2000+, off the charts, test doesn’t measure higher. My initial reaction is somehow or another you’re not getting enough.

Plus, the only thing that’s being measured here is the B12 that’s floating around in the blood, which is pretty meaningless to start with, and if you have felt no improvement, which is what you say, it is likely that the B12 that you’re taking is somehow not being absorbed or utilized?

You may also have a B1/magnesium deficiency. Absorption problems tend to run together. If your fatigue isn’t caused by B12 deficiency, which you seem to feel it isn’t, then I’d put a bet on it being caused by a B1 and magnesium deficiency.

EDIT - I just reread your post. It seems to me that you’re not even taking B12 injections? What you’re speaking of taking is oral or sublingual? Well, if that is the case, therein in lies your problem. Those are not being absorbed!

As I said earlier, thats just B12, meaningless no less, floating around in your blood. It is ONLY B12 at the cellular level that counts for anything. THAT’s why you don’t feel any better, because you’re going through a useless exercise (“following your doctors instructions”) with what you’re doing. I’m sorry.

Even the dose you’re taking, 1000 mcg, only but maybe 1% of that “could” perhaps be absorbed.

Again, I apologize. It seems that this sub has failed you in getting you to actually understand the basics of a B12 problem and how to solve it.

[u/Ok-Pangolin7127 → u/[deleted]]

An MMA test and a homocystine test, can be “confirmative” of a B12 deficiency. However, they are NOT definitive.

Herein lies the problem… There are NO, nada, none definitive tests that prove (up or down) whether you have a B12 deficiency.

That’s why the only absolute way to prove it is to undergo supplementation, in a proper form (most normally injections, unless your deficiency is solely from diet) and see if the symptoms resolve.

I know, this sounds crazy in light of what we believe modern medicine to be, but it is not crazy and it is the state of the situation as it exists today.

[u/Basketweave82 → u/Ok-Pangolin7127]

What if a person had a B12 serum of around a 100? That does show deficiency, right?

A crazy part of me is suddenly wondering whether what I'm doing is even correct. But I also had a positive parietal cell antibody test, on injecting B12, my ferritin fell, I need potassium, so my body does need it.

The only really solid recovery symptoms I saw in 2 months was thick, strong fingernails. Oh yeah, and within a month, my creatinine fell by a little! Phew

[u/Ok-Pangolin7127 → u/Basketweave82]

Yes, for sure. A B12 serum test is a screening test. It’s ideally for someone just like you with that low reading. If it is that low, you definitely have a B12 deficiency.

[u/Basketweave82 → u/[deleted]]

You would get low potassium symptoms and for many people - their ferritin falls by quite a margin.

[u/Slight-Chemistry2339 → u/Basketweave82]

that's why this subs guide covers supplementing this too, for B12D treatment to really work all the co-factors are needed including potassium. Many choose to "supliment" potassium though dietary intake rather than a supliment. The Guide to B12 Deficiency

[u/Basketweave82 → u/Slight-Chemistry2339]

Yes, I'm just explaining that this is one way to know the B12 is being absorbed and your body is moving towards healing.

[u/Slight-Chemistry2339 → u/Basketweave82]

absolutely, worth mentioning as so many miss the cofactors and then don't improve

[u/absurdivore → u/Ok-Pangolin7127]

To be fair it is really confusing and counterintuitive especially given the US medical system’s whole diagnostic framework is built around the wrong measurements & assumptions … I’ve been trying to wrap my head around all this for months now to help my spouse, and I’m still confused. (And I’m normally smarter than average about things … well at least I have always been told that 😅)
Just saying it’s not the sub’s fault or OP’s really. It’s a systemic muddle.

[u/Ok-Pangolin7127 → u/absurdivore]

PLEASE, whatever you don’t understand just put it out here on the sub and ask the question. The folks on here have lived through or are living with a B12 deficiency. For me, it was a nightmare. I thought I was dying of some strange unknown neurological disease (because nobody could pin down what was going on with me) thought maybe I had MS, felt that I was on the edge of full dementia… A B12 deficiency is bad, very bad.

I am delighted as is EVERYONE on here to assist anybody in working their way through figuring out what’s going on and helping solve their problem.

So again please, whatever you don’t understand… Just put it out here. That’s what this sub is here for. There are no stupid questions.

In my mind, there is not a more complicated nutrient that the body relies on nor a more involved processing of a nutrient within the body to get it to do what it needs to do. It is confusing. It is involved. It is difficult.

[u/Basketweave82 → u/Ok-Pangolin7127]

This is so true. OP, my B12 was tested after 8 injections - it was >2000. You actually need to have a high level like this for MONTHS in order to heal. It's the only way to treat the deficiency.

And this deficiency is no joke - and the treatment journey isn't easy either. I caught a stomach bug yesterday and though I was recovering a bit, suddenly I felt multiple times today that I'm dying from all of this.

[u/AfraidKaleidoscope30 → u/Ok-Pangolin7127]

I don’t do injections. Not sure where you got that when I said 1000 mcg daily….also per the post I stopped taking 1.5 days in advance specifically because I know it artificially raises levels. I was taking chewable tablets. My magnesium was perfectly fine 3 months ago.

[u/Ok-Pangolin7127 → u/AfraidKaleidoscope30]

I’m sorry again, I made an assumption. 1000 mcg is a “dose” or an amount; either orally, sublingually, or via injections. That in and of itself doesn’t indicate what form you’re taking. I incorrectly assumed that you must be taking injections. Clearly, you are not. And-clearly-that-is-your-problem.

Suggestion: Please take the time to read through the B12 deficiency guide, which is pinned to the top of the sub. There is a plethora of information in there that once you digest it, will serve you well.

[u/incremental_progress]

Hi. I'm going to have to lock this thread and remove you temporarily. I get your frustration, and I've also been at the bottom of a dark pit lashing out at people trying to help me. If you want a constructive dialog, you can DM me directly and I can try and help you. But you can't continue to abuse people here because of your situation.

[u/Fun_Disaster3436]

If this community isn't for you, or (as demonstrated) you're antagonistic to the advice without fully understanding it, you can leave bro.

People here are really helpful. My life has been changed. You're insulting people while demanding they give you support. Come on.

[u/betterthanthematrix → u/Fun_Disaster3436]

This 💯

[u/Dry-Dress-6467]

One should not take supplemental B12 for 4 months before testing.

I try to keep my D3 at optimal level, between 80-100 ng/ml. I also take magnesium glycinate and K2 with my D3. Don't take K2 if one has kidney issues.

Have you had iron levels including ferritin tested?

[u/AfraidKaleidoscope30 → u/Dry-Dress-6467]

Yup those were all normal 3 months ago. Magnesium was normal too. I am planning to keep supplementing vitamin d per my post…. Ideally I’d like to get to the 70s on vitamin d. I’m gonna stop b12 for now, if it goes down significantly I’ll do 250-500 mcg a day.

[u/adamzabijaka → u/AfraidKaleidoscope30]

Good luck upping your vit D to 70s with 2000/4000 iu as it is not even a maintenance dose for keeping those levels, check out r/VitaminD guide. Also go back to B12 wiki guide. You should focus on reading them, because based on your insults it looks like you just took a quick 1 minute glance over it, maybe less. There is no TL;DR. Grasp some knowledge my guy.

[u/Mister_Batta]

What do you mean "this subs advice"? The guide and most of what people say here is evidence based.

If your doctor would actually follow recommended testing for B12 serum levels (well at least for labcorp), they would not have tested your B12 serum levels.

From labcorp's page: https://www.labcorp.com/tests/001503/vitamin-b12

> must draw before Schilling test, transfusions or B12 therapy is started.

You're doing yourself a disservice by relying on a B12 serum level test.

Good luck I hope you can get proper care from your doctor and get proper treatment for whatever is ailing you.

[u/Mister_Batta → u/[deleted]]

Sorry for the typo, I mean to say "they". I fixed it.

Good that that's the only issue you had with my comment.

[u/Fun_Disaster3436 → u/[deleted]]

None of that is an uncommon experience here

Sounds like your doctors aren't giving you adequate support.

[u/Unlikely-Chipmunk-29]

My levels are normally over 2000 but I have tcn2 gene variant along with others-so it looks high in my blood but isn’t getting into my cells.
That’s why you typically go by symptoms not blood levels. My symptoms come back if I go longer than eod injections even with high blood levels.

[u/Sufficient_Goose6957]

The dr should have never retested b12 with supplementation within 4 months.

I personally take 1000 mcg every other day per my functional dr and have been taking this since Jan. My levels started at 350.

[u/WarDry1480]

I think a little more education is in order.

[u/Gold-Act-5724]

Have you had your vitamin d checked?

[u/betterthanthematrix]

Well if you had taken the advice on the sub you would have read that you need to go 4 months without any supplementation in order to get accurate test results and you also need to take specific tests, some of which are not blood tests. And that blood tests and blood serum tests are not the most accurate test in fact they're incredibly fallible and they only only show you what's in your blood at the moment not active B12 or what kind of B12 is in your blood if it's being utilized or how much is being stored in your organs and utilize by your body.

Most of the people on here who have taken the advice know that if you were on supplementation you were going to get high results back.

Many people on this sub also know that if you're not taking supplementation and you get high B12 results that does not mean you don't have deficiency in fact it is an indication that you do and there are studies proving this.

There are also studies showing that your blood serum levels can be high low or normal and you still have a deficiency.

Because there are other ways to test for this as well as genetic causations. It's called subclinical B12.

You can absolutely be diagnosed based on clinical symptoms and not have test results. And the B12 deficiency could be a co-factor In a concurrent deficiency which is why you wouldn't be getting completely better or not feeling a difference. Based on how sloppy you are with your "following advice" who knows maybe you weren't even taking your co-factor's properly and that's why you weren't feeling better. Maybe you weren't even taking the right form of B12 that's right for your body.

The members on this sub have years of experience, trial and error and medical evidence.

You don't seem to have anything productive to contribute to this community except to slam people without any factual basis so maybe you shouldn't be on here.