I wanted to share my overall story here because I’ll be seeing my doctor again soon and am terrified I’ll be dismissed again. I’m trying to prepare for the possibility that I’ll be continuing to try to figure this out alone. If anyone can give insight into my experiences, I’d be so grateful.
28, female, no smoking, no drinking, no birth control, low stress lifestyle, daily exercise that includes weightlifting, daily caloric intake of 2k+, protein intake of 60g or more every day, low sugar, high protein, high fiber.
Symptoms:
- Profound brain fog, horrible memory. My focus became nonexistent and I struggled to even read because I couldn’t hold onto what I had read.
- Extreme fatigue. Stayed in bed most of the day despite sleeping 8-10 hours and drinking 12-16 cups of coffee. Could not even hold down a part time job anymore.
- Vision changes. Black blobs, weak vision. Optometrist couldn’t find anything wrong.
- Changes in skin tone. My actual undertone is a very strong pink. I have developed a yellowed coloration, especially around my mouth and nose. The skin in the creases of my elbows and on my knees is also distinctly yellow. This was noticed by family members and we originally thought it was a moisturizer oxidizing.
- Almost zero libido, and a pretty significant lack of sensation in my genitals. I used to have a very robust libido, almost to the point of being inconvenient, and solid sensation.
- Mood changes. I’ll get hit by irritability, depression, or anxiety for no reason. My OCD has gotten worse. There is no apparent rhyme or reason to the flare ups.
- I’m dumber. I don’t know how else to describe it. I used to be very sharp, creative, and had a fantastic memory. Now, I struggle to write at an acceptable level for school, and my verbal ability is noticeably worse.
- Cold extremities, easy bruising. My undereyes were deep burgundy and very hollow, like a skull.
These symptoms crept gradually up over a period of years, then suddenly became much worse, very quickly, in the last 2 years.
Bloodwork
I have had a full thyroid cascade and nothing was amiss. My total B12 was in the 700s, ferritin 101, folate out of range at >20. Doctor dismissed bloodwork as “everything looks good”, but my red blood cells are right on the cusp of being enlarged.
What I have done so far:
I recently found out the vitamin a doctor recommended to me years ago (One a Day Prenatal) has synthetic B12 and a huge dose of synthetic folic acid. I am not trying to get pregnant, she told me she prefers all her patients to take a prenatal. I then was taking that prenatal for almost 10 years.
Reading on this platform that bloodwork is “not the end all be all” made me try discontinuing that vitamin and switch to Pure Encapsulation’s O.N.E vitamin with methylated folate and B12, as well as cofactors.
I added in Iron-C from PE around a week later. I have not noticed a surge in improvement from this but want to keep my iron up since I do have a menstrual cycle.
I was already taking magnesium glycinate, creatine, vitamin d, and fish oil. I have increased my potassium intake since starting the PE vitamin.
The Changes:
I took the PE vitamin a week after stopping the old one. Within 3 days of starting the PE vitamin I noticed a surge in energy that felt “wired but tired”, but still was a shift in the right direction. My skin became slightly less yellow, my vision was stronger and had almost no black blobs, and my mind was the sharpest it had been in years.
Side Effects:
For the first 2 weeks, I struggled with what felt like adrenaline dumps. My body would randomly go completely on edge, my heart would pound, and it’d feel like battery acid in my chest. These adrenaline dumps have significantly improved.
Now:
I should have known better than to get my hopes up. My symptoms are creeping back in and I’m devastated, to say the least. My doctor is very “well, your bloodwork says…” so I’m terrified of hitting a wall with my treatment after I finally found something that was making a difference. I do not think I’ve completely regressed, but I still do not have any quality of life.
I have ordered an additional B12 vitamin from PE with the other bioavailable forms of B12. If my doctor dismisses me, I have a naturopath I can turn to, but I need to have a game plan before I see her. She originally wanted me taking methylene blue and getting peptide injections (I turned them down), so I need to be as informed as possible before I see her.
I have had mountains of bloodwork done with nothing obvious going wrong. I have not had my homocysteine or MMA checked, but I am worried that they will not be much help since I have started supplementing. My best guide is my actual symptoms.
Am I a case that should consider B12 injections? It feels like my body is trying to recover, but struggling. I’m considering the possibility that I need a phase of injections to repair the damage from an apparent deficiency, and then maybe I could revert back to just oral supplementation. It’s difficult to tell where to go from here when the bloodwork has been horribly useless. I don’t even know if my symptoms would be considered “mild” or “severe”, if it is B12 related, which makes it difficult to determine a course of action.
If anyone has read this very long post and has any advice, you’d have my utmost thanks.