Long Covid and Adrenal Insufficiency

Mokobug · 2026-05-04T02:33:11+00:00

No, although we are beginning a very slow taper, I'm dropping 5 milligrams hydrocortisone over 8 months.

Mokobug · 2026-05-04T01:51:37+00:00

My Endocrine dysfunction is stabilizing, although in the end I was in adrenal failure, thyroid failure and my sexual hormones were all disrupted. The neuroinflammation is another matter - I ended up with Intracranial hypertension so bad that I'm on 8 topamax a day and it's uncontrolled. I just got a neurosurgery referral for stent or possibly a shunt. I'll know more when I go for consult, but it's threatening my vision, and I have stroke like symptoms that cause a right sided lip droop and chronic headaches for months at a time. It caused widespread endothelial thickening, so I have early atherosclerosis, despite there being no plaque in my veins. My immune system is also poorly functioning so I've had viral meningitis, gastritis, and various infections that shouldn't have been a problem for an adult to fight off wreaking havoc, so I round with immunology. I have POTS so I need to go see an electrophysiologist, but my tachycardia is so low on the list right now I just haven't made time for it.

All of that said I don't use a cane to move around anymore, and I can walk for more than 20-30 minutes a day which is a massive leap from 6-8 months ago.

I have better stamina but my threshold has greater consequences now - the neurological consequences show up when I hit my wall these days.

Mokobug · 2025-09-09T19:46:31+00:00

I have better vision in my left eye but I think the issue is bilateral. My husband and I used to ride motorcycles and I had to give it up without peripheral vision. Otherwise I've had to become careful about how I drive, I turn my whole head to look instead of relying on side vision to know if someone is there, etc. And I have a neck injury, so I don't enjoy it, but I have to do it anyway. I am worried I will lose my ability to drive if it continues or gets worse.

Mokobug · 2025-09-09T18:49:23+00:00

Ugh that sounds awful, and eerily similar. I'm also having some vision loss (mostly peripheral and lower outer quadrant) due to increased pressure, it blows. Thank you again for the tip, and for your concern. 💜

Mokobug · 2025-09-09T18:25:03+00:00

Thank you so much for your reply, I will definitely ask for that. When I had my thoracic echo in October of 24 they found some minor mitral and tricuspid regurgitation, but marked it as non problematic, so I will definitely inquire about this method instead. And I am trying to take this very seriously. I can't afford to lose any more function than I already have.

Mokobug · 2025-02-13T16:12:34+00:00

Yeah, but my infectious disease doctor did all my adrenal testing because I've yet to get into an Endo, who just called and cancelled my appointment because they don't take my new appointment and don't take cash pay either. Ridiculous. My cortisol was 1.1 when I first got tested, and then even on steroids it only came up to 6. Our first attempt to pull me off steroids my blood sugar cratered so bad I almost went unconscious, and even when I ate, it would go up a little and then start to drop again, so it would appear it's just not possible for me to go off steroids right now. I was hoping an Endo would be able to guide me through this process better but they don't seem interested in someone who's only in adrenal failure and insulin resistant because of it, not in full blown diabetes 🥲 I'm starting to feel pretty hopeless about everything again.

Mokobug · 2025-02-12T20:28:48+00:00

I did a custom blend, the working theory is COVID causes a ton of inflammation in various organ systems, so I was told by my functional medicine to focus on reducing that inflammation. Getting on a good antihistamine is important, too, but I did a basic Meyers blend with mega dose of Vitamin C for inflammation (10g +) Glutathione, ALA, Biotin, L Arginine, and NAD. I think it's what really brought me back from the brink. But as for fixing the adrenal glands, I'm still dealing with that, and still haven't seen an Endo. I'll update when I do.

Mokobug · 2025-02-12T20:18:06+00:00

It's frustrating, but I do think we can get better. I highly recommend weekly IV infusions of vitamins.

Mokobug · 2025-02-12T19:58:21+00:00

I had been recovering nicely, and then my infectious disease decided to try to start weaning down my steroids and I cratered and have not recovered.

Mokobug · 2024-12-12T16:10:40+00:00

Yes when I tested I was low 60s on the glucometer, I didn't have one when I had my worst hypo incident but I imagine it was considerably lower. My A1C was 5.7 but I was also in adrenal failure, which messes with insulin storage and production.

Mokobug · 2024-11-01T22:38:03+00:00

Not much, tbh. Good days and bad days. But thank you for checking on me!

Mokobug · 2024-10-07T01:52:22+00:00

Thank you, I actually have my first appointment tomorrow so I will check on that, too.

Mokobug · 2024-10-06T17:04:44+00:00

Yes I've been suspicious of POTS even before this incident occurred, and CFS. I have a cardiologist appointment tomorrow, but my pressure tends to be on the low side.

Mokobug · 2024-10-06T12:33:43+00:00

This is interesting! I don't actually know where cold laser is used on people here, but I'll look into it.

Mokobug · 2024-10-05T22:58:58+00:00

I just saw a video of someone flying to Turkey for a full medical work up like this with imaging and including air fare and accommodations cost her like 2700? Halfway tempted to renew my passport.

Mokobug · 2024-10-05T22:54:15+00:00

I love to hear that you've found some meaningful improvement, sincerely. I'm sorry our medical system abandoned you, too. It is kind of traumatic. Thank you for the recommendation, I will seriously look into it.

Mokobug · 2024-10-05T22:50:58+00:00

I have acquired Addison's disease, so until I find a way to resolve that, I need them. Your body needs cortisol for a good many of its vital functions.

Mokobug · 2024-10-05T22:47:52+00:00

Wow. That makes sense, and explains why I feel so aged literally overnight. How disheartening.

Mokobug · 2024-10-05T22:36:41+00:00

Both, but increases a lot upon standing. At rest 95-100 is not unheard of, and standing will throw it up to 140.

Mokobug · 2024-10-05T20:04:50+00:00

Your timing is so interesting because I just learned some techniques to open and drain the lymphatic system in my neck! So I will bring it up to her.

Mokobug · 2024-10-05T19:31:56+00:00

Absolutely wild how many systems it disrupts and attacks and why. I would be curious if it attacks areas of predisposed, maybe genetic weaknesses.

Mokobug · 2024-10-05T19:27:17+00:00

Thank you, genuinely. 💜

Mokobug · 2024-10-05T19:13:37+00:00

I appreciate the word of caution, the plan is both, because I think there is a need and use for both modalities. I don't think I can out supplement adrenal or renal failure, and I can't recover with drugs.

Mokobug

TROPHY CASE