Mystery Ailment - adrenals, thyroid, who knows?

Hey man, I wonder about how you're doing frequently, as I was one of the posters on here that has also struggled with something similar. Any updates on your condition? Hope that it has improved!

How are things 4 years later op? Im going through something the same but only last 3 weeks.

Hey, weird to see this pop up.

But anyway, I am still not the same person I once was. In a few ways I am functioning better, but i still struggle a lot. Very little energy and so on and so forth.

Got blood re tested about 6 months ago, somehow my ferritin dropped even lower even though I was making a point to not exercise or stress myself, and eat a more iron rich diet. It went from 32 down to 21. Thats really the only thing on my results that is curious. My iron is 138 (range goes up to 155). I just don't know how I can get my ferritin up, as Im pretty sure thats going to make me feel so much better.

Any suggestions would help. I've been taking a combination of a 1000mg Vitamin C, 2 folic acids, 1 ferrous sulphate, and 1 B Complex, all once a day. Not sure if its helping, been at it for about a month.

I haven't read all of the posts, OP, but have you done a sleep test? You could have sleep apnea. I was very surprised when I was diagnosed, but I've found that using a CPAP machine has helped a lot with my fatigue.

Doesn't sound like you followed this path, but, this guy was able to increase ferritin levels and alleviate his symptoms.

http://www.healthrising.org/forums/threads/iron-man-a-young-persons-pots-me-cfs-recovery-story-pt-i.4803/

Hey man, did you read through the entire link I posted? If you think ferritin is your problem, whatever your diagnoses, this guy was able to increase it with Venofer iron sucrose infusions. Fereheme infusions might be even more successful, but riskier and harder to access?

Anyway, amazing the difference in genetics, as he required a much a higher ferritin level than family members to feel remotely normal.

Bump... How are you guys managing?

How are you today?????

Easy.

Your ferritin is too low. It can easily disrupt hormone homeostasis causing hypothyroid and adrenal issues. I've personally found ferritin levels of 50-120 to be the best for running performance. I've had ferritin levels of 16 before and could barely get out of bed or jog.

Fastest way to increase ferritin is through iron infusions. The pills will take months to work. Injections will take days to kick in.

Make sure your eating foods like meat that increase iron absorption and not consuming foods and drinks that inhibit iron absorption like coffee and tea.

I just read through this entire thread. I had something similar happen to me. It started in 2014. I've just had my entire genome sequenced. Awaiting the results....

3 years since it started: I've been reduced to jogging just under 9 minute miles for 10-12mile runs 3-4 days a week, so sad. I have had fatigue, poor sleep, flushing of skin in hands and feet while training or after eating. Definitely low blood sugar, but not diabetes or insulinoma.

Anyone in this thread have any notable updates?

Bump.

Just read through, been suffering myself, very similar.

OP - are you out there? How are you doing?

I am here. My body is still pretty bad, just feel tired and achy all the time and running hurts a lot/heart rate goes through the roof/feels like I am barely hanging on even a few minutes into a run. Or any exercise really.

Last test I got my ferritin was at 89 and my iron at 97 I think. That somehow seemed to have turned around from the previous year at 21.

My sleep is pretty bad for the most part. I wake up a lot and feels like sometimes I have anxiety. But then sometimes I sleep really well and don’t really wake up at all. Either way I typically wake up feeling dead and like I haven’t rested much at all. I was able to complete a sleep study that came back negative for sleep apnea.

I’ve tried eating gluten free, as I’ve definitely had a lot of GI issues as well, and while it helped a little in that sense, the fatigue and everything else hasn’t gotten any better. I’m considering trying FODMOP to see what foods really give me issues and which don’t.

I still run a little here and there...when I go out my goal is to try to run as easy as possible to try to keep my heart rate somewhat low. It takes a painfully slow pace (8:15-8:45) to achieve that and even times (like the other night) when I do this I still just feel so tired/fatigued/in pain/out of breath that I have to stop and walk. I lift about 3 days a week, mostly heavy weights with low reps.

7+ years now...still have a dream of a day coming where I don’t feel like absolute $h!t and can train again and feel good doing it.

Would love to open up the discussion again.

Look into Ampligen... might be a life saver

Dr. Peterson fan wrote:

Look into Ampligen... might be a life saver

Interesting stuff. Looks like it’s $46,000 now? Also, reading some of the testimonials, I’m definitely not in as bad of condition as those people but I feel many of their symptoms for sure. Just to a lesser extent.

Interesting to look into though. Thank you for the response.

Hey OP! Still here? How are you feeling now? Better?

Wow, interesting to see this pop up again the minute I’m actually on this website, which isn’t often these days. I’ve ruled out several more things in the last couple years.

My new doctor is focused on getting my Vitamin D levels up significantly (level 29 back in 2012, 26 about a year ago, and last week, 20). He thinks that may be it.

He had me on 50,000 i/u once per week last year when it was at 26 and it didn’t do anything, obviously, so I do wonder if I have some issue with absorption perhaps.

Have you been tested for Epstein Barr Virus? It's the mononucleosis virus. Chronic EBV has been linked to chronic fatigue syndrome and similar illnesses that mirror many of the symptoms you're having.

While traditional medicine says there's new no cure for EBV, I started taking Lauricidin 8 years ago based on testimonials and it completely cured my problems with it. Although my problems were not a severe as yours.

Interesting if a little whackadoodle. This guy could be right...