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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Not sure where to start

Messages
6
Basic protocol was going OK until I added glutathione and grass-fed whey to the mix. Suddenly the real live actual *energy* I've been feeling was gone and I didn't know why.... Until I stumbled on Fredd's comments about exogenous glutathione/precursors. Removed both, bumped up the B and the energy more or less returned.

THANK YOU FREDD!

I've spent weeks reading, trying to understand how this all works and clearly I'm still confused. I don't want another setback so I'm just going to ask for your input/guidance. Please. Any suggestions on what to do/not do would be much appreciated.

Main issues: life-stopping fatigue (mental/physical), bizarre weight gain
  • do not have pain
  • do not have GI issues
  • I've made all the usual "lifestyle" changes
  • have a history of TBI (1999, 2001)
This has been going on for almost 2 years. Has happened twice before after prolonged periods of extreme stress, but not to this extent. Been diagnosed with "maybe lupus", "could be CFS", adrenal fatigue (cortisol panel was fine). Drs basically have no idea.

23+me results:

VDR taq +/+
COMT v158m +/+
COMT h63h +/+
MTRR a66g +/+
MTHFR a128c +/-
BHMT 2, 4, 8 +/+
CBS c699t +/-

I know COMTs are supposed to overmethylate, but think my VDR status complicates this? Not 100% clear. I have never experienced what other people describe as overmethylation and have tried different combos of methyl donors at once. I do get activated from mB12 but in a way that just feels... alive.

Drs have run every test know to man, most are normal. Exceptions:

B12 - high 1485 nr (211-946)
Have always tested high, even when I was vegetarian for 10+ years. Was bad about supplementing; guessing it came from food additives. I now eat meat, no longer eat processed food and levels have come down over the years but still not normal.

DHEA - low 60 nr (64-357)
Has been this low for a year, apparently not great for a 40 y/o female. Has not responded at all to low dose DHEA/pregnenolone supplementation, per Dr.

A1C - high 5.7%
This one puzzles me. Have tracked glucose with home meter, before/after meals. It's always in the 90-120 zone (high as 120 is infrequent). Fasting insulin was on very low end of normal.

MCV - 97
highest level = 107
lowest level = 94
(saw Fredd mention this, not sure where it fits)

Vit D - I have S.A.D and understand that D levels can effect severity. I'm constantly outdoors in the sun (Nor California) and supplement D in high doses (10,000 - 20,000 IU/ day, depending on season) but have a hard time getting levels to reach/stay above 50. Thinking this relates to VDR taq +/+??

Triglycerides low side (~20)

Apologies for the epic-ness of this post. Did my best to be thorough yet concise :|

Thank you in advance!
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
VDR doesn't lower your vitamin D levels, but it makes what Vitamin D you have harder to use, because the receptors don't work as well. Makes it all the more important to have good Vit D levels. I'm just now learning about needing Vitamin K when you take Vitamin D. Others may help there.
 
Messages
6
VDR doesn't lower your vitamin D levels, but it makes what Vitamin D you have harder to use, because the receptors don't work as well.

Ahhh. Thanks for making that distinction. I thought it was a storage *and* use issue. Vitamin K is definitely recommended. The ratio in most supplements is 10:1 D/K, but I haven't gotten any clear answer on how much K to use with high doses of D.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
DHEA - low 60 nr (64-357)
Has been this low for a year, apparently not great for a 40 y/o female. Has not responded at all to low dose DHEA/pregnenolone supplementation, per Dr.

A1C - high 5.7%
This one puzzles me. Have tracked glucose with home meter, before/after meals. It's always in the 90-120 zone (high as 120 is infrequent). Fasting insulin was on very low end of normal.
I was lying in bed thinking about this last night. My DHEA was 17, dropped to 14, and stayed there even when I started supplementing with 5 mg DHEA transdermally (ref. range 26-200). My A1C was 5.9 (ref range 0-5.7). So I am wondering if some of what it going on with you may be related to what's going on with me. More results were progesterone undetectable, free testosterone 0.6, free estradiol 0.04, saliva cortisol lower 10% of range in morning, undetectable afternoon and evening. ACTH stim test: fail. Symptoms: loss of all body hair and most of pubic and underarm hair, no sexual response, frequent hypoglycemia (55-75), insomnia, nausea, dizziness. These things may or may not sound familiar. If some of them do, please, let me know.
 
Messages
6
Aw, I *really* appreciate your thinking. I can't imagine how awful you must have felt with numbers like that. I'm pretty much on the low-normal end of all hormones. Low enough to feel lifeless, but not low enough to alarm doctors? Oddly enough, my menstrual cycle is the only thing that appears to be working normally (after not having a period for 8 months). Thankfully, I haven't experienced any of the issues you listed.

Mental/physical fatigue and weight gain are the biggies for me. I've almost gotten used to the fatigue, but mid-day naps don't help with the weight. Went from a very normal 140 to 190 (I'm 5' 10") in less than two months without any chance to my eating and it's still creeping up. My thyroid levels are normal/consistent with past tests and other that the elevated blood sugar, no significant lab changes. I swear doctors just think I'm sitting around all day eating, even though I've expressed concern about my complete lack of appetite.

Just... frustrated.

Thanks again for thinking about me & trying to help!
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
@frolic , you're welcome. I rarely have my subconscious bug me about not responding to something in a post, but since it did, I thought I'd ask. You're right about my feeling awful. I still do, but I've been turned away by my endo and three others (two because I'd been a patient of hers. I finally have an appointment next March 7 to address labs from a year ago and the pituitary tumor they pointed to and would have found then, if only I could have got them to pay attention. Sorry I don't know enough to help you!