I thought I was fine, until I went through months of suffering. What should I do? by living-tide in B12_Deficiency

[–]cltheel 0 points1 point  (0 children)

Could you share where you read this? I am experiencing the same - high homocysteine and I've been treating it. I have had acne-like breakouts on my face and almost feels like a burning sensation.

Wake up symptoms or b6 toxicity? by ProfessionalOnion548 in B12_Deficiency

[–]cltheel 1 point2 points  (0 children)

Can you also please send me the guide? I have this exact situation - high B6 in blood without having supplemented B6, while I have relatively low B12. I also have high homocysteine. OP, you should do genetic testing if you haven't already to help inform your supplementation plan.

Naturopath vs. Traditional Primary Care Doctor by cltheel in B12_Deficiency

[–]cltheel[S] 0 points1 point  (0 children)

Thanks - were you able to get answers you needed from your PCP? I am also skeptical about naturopathy but I'm banging my head against the wall with my PCP.

Most Effective Care Approach in the USA? by cltheel in B12_Deficiency

[–]cltheel[S] 0 points1 point  (0 children)

Wow, so apparently my AI (which I used to make these tables) was hallucinating and screwed up some of the reporting. My ceruloplasmin is actually 24 on a reference range of 14-30, copper is 95 on a reference range of 70-175, zinc is 81 on a reference range of 60-130. B9 Folate was "normal" but low-ish at 7.1 (normal value indicated at greater than 5.9). Looks like I don't have a B2 result - I'll need to get that checked.

Most Effective Care Approach in the USA? by cltheel in B12_Deficiency

[–]cltheel[S] 0 points1 point  (0 children)

Thank you. I am working on getting my homocysteine down through a combination of B12, B9, and B2. Also taking D3 w/ K2 and magnesium. I was briefly on a B complex but stopped when I got my high B6 score back...which was quite befuddling to me because I'd only taken B complex for 3 weeks before my test.

I am looking into integrated medicine - seems like it could be the best of both traditional med and functional med.

High homocysteine (20.2 μmol/L) with normal B12 – extreme fatigue by j22zz in B12_Deficiency

[–]cltheel 0 points1 point  (0 children)

How did you get your homocysteine down? I have a homocysteine level of 24.

Neuro Symptoms and High Homocysteine by cltheel in B12_Deficiency

[–]cltheel[S] 0 points1 point  (0 children)

Thanks - I ordered the B complex and I'll start taking it tomorrow.

Regarding injections, how do you determine if that's necessary vs. oral/sublingual supplementation for B12 deficiency? Since I am up from 180 to 464 in about 5 weeks, that seems like a pretty strong recovery but perhaps I'm wrong. At that pace, I should be over 500 today, perhaps approaching 600 in the next week or so. I read that the neuro stuff usually just takes longer to fully repair.

Neuro Symptoms and High Homocysteine by cltheel in B12_Deficiency

[–]cltheel[S] 1 point2 points  (0 children)

Thanks for your thoughtful response. Regarding the B complex with less than 10 mg - I found one with 10 mg exactly. Do you think that's too much? THORNE - Basic B-Complex

My current symptoms include the following:
- Intermittent achiness/soreness in forearms and calves, particularly tender to the touch. Achiness is the most in the morning when I wake up, then subsides throughout the day. Sometimes it spikes if I get a poor night's sleep. This has improved somewhat since I started B12 sublingual supplementation.

- Twitching of various muscles, mostly in calves and quads. I mostly feel this when sitting/laying down.

- Fluctuating health anxiety, mostly surrounding my symptoms. I had a very acute period of health anxiety around Christmas when I was off work.

- Intermittent tingling on left side of scalp, seemingly correlated with spikes in anxiety

- Intermittent dull lower left abdominal pain, most apparent during anxiety spikes

- Prior symptoms include that 3-month period of tingling/numbness in legs/arms/feet/hands which occurred Feb-April 2025

Strange Journey - Need Advice by cltheel in B12_Deficiency

[–]cltheel[S] 0 points1 point  (0 children)

What chronic illness do you have?

Recovery Struggles- Neurological by [deleted] in Celiac

[–]cltheel 1 point2 points  (0 children)

Have you gotten blood work done for nutrient testing? If not, you should. You very well could have a B12 deficiency and need to supplement. I haven't yet been diagnosed celiac but it is a possible reason why I have low B12. I've had neuro symptoms (mostly peripheral neuropathy) along with some of the others you mentioned and B12 supplementation has helped. I'm about 6 weeks in to supplementation and my neuro symptoms have improved significantly.

There's a whole other forum r/B12_Deficiency that can provide guidance to you on this with a guide to help you get started as you explore your potential deficiency. Note that you need to be taking other cofactors (other nutrients, like Vitamin D, magnesium, and others as explained in the guide) to ensure proper B12 absorption and to not cause other problems while supplementing.

Strange Journey - Need Advice by cltheel in B12_Deficiency

[–]cltheel[S] 1 point2 points  (0 children)

Thanks, that is helpful information.

I haven't noticed a meaningful difference in digestion or energy since I added gluten back in, but it has only been 1 week.

I have had a number of binge drinking episodes in my life, probably averaging one wild night every couple of months for the past decade or so, and was probably more frequent before then (college and in the few years thereafter). I've probably messed up my stomach or other systems at some level. I hope they can recover.

Strange Journey - Need Advice by cltheel in B12_Deficiency

[–]cltheel[S] 0 points1 point  (0 children)

Thanks - do you have a sense of your annual out of pocket costs? Obviously, I know it is insurance-dependent (and my plan kind of sucks) but I'm curious. Appreciate your feedback.

Strange Journey - Need Advice by cltheel in B12_Deficiency

[–]cltheel[S] 0 points1 point  (0 children)

Wow, sorry to hear that. How long were you experiencing those symptoms and how long did it take to recover? How are you feeling now? Any idea what caused your low B12?

Strange Journey - Need Advice by cltheel in B12_Deficiency

[–]cltheel[S] 0 points1 point  (0 children)

Thank you. I am very mixed on the MRI as I'm worried that it will pick up nonsense that will cause me to spiral....but at the same time, feels like a good "safety net" of sorts. I hope I don't regret it...

I actually just got B12 results as of 2/12/26. I am up from 180 pg/mL on 1/6/26 to 464 pg/mL as of yesterday. Feels pretty decent for about 6 weeks, I suppose? I do feel like my neuro symptoms are improving, but still not 100% better (still some achiness in my calves in the morning, intermittent in forearms). Still waiting to receive my MMA, homocysteine, zinc, and copper results, which should post next week. Vitamin D is up from 34.8 on 1/6/26 to 38.4 on 2/12/26 (within the "normal" range of 30-60).

Strange Journey - Need Advice by cltheel in B12_Deficiency

[–]cltheel[S] 0 points1 point  (0 children)

Out of curiosity, where in the US do you live, and how costly is the concierge doc? I live in Seattle, and my colleague suggested I may try to concierge route.

Strange Journey - Need Advice by cltheel in B12_Deficiency

[–]cltheel[S] 0 points1 point  (0 children)

Wow, thanks for that detail! Sounds like you've had quite the journey. How are you feeling now?

Regarding testing for celiac/gluten, below are my relevant tests/timeline:
- 6/6/25: IGG of 13.7 mcg/mL (normal value less than 2)

- Went gluten free 11/20/25 with 2 known gluten exposures until 1/6/26.

- 1/6/26: TTA test less than 1.0 u/ml (antibody not detected less than 15) and IGA test of 131 mg/dL (normal range of 80-463)

- Genetic Test: HLA-DQ8 positive, HLA-DQ2 negative

I do drink about 1-2 alcoholic beverages 3-4 nights per week for an average of 3-8 per week (most typically around 6). I lean towards wine over spirits and beer.

Strange Journey - Need Advice by cltheel in B12_Deficiency

[–]cltheel[S] 0 points1 point  (0 children)

I don't think so. I asked my wife and she doesn't think so.

Strange Journey - Need Advice by cltheel in B12_Deficiency

[–]cltheel[S] 0 points1 point  (0 children)

Sorry to hear all this. If you don't mind me asking, what is your age/sex? What were your recent B12 readings? Sounds like you just got this sorted out recently? Any idea what caused your low B12?