Long COVID with adrenal insufficiency, much better on hydrocortisone and cortisol pump
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 5 months
- Last post
- Feb 2023
In their words
- Condition: Long COVID
I'm also on an anti inflamatory and a beta blocker for the "long covid" symptoms.
In context ↗ - At worst: Moderate
I went about 5 months being unable to masturbate or work out at all. It sucked.
In context ↗ - Now: Much better
Now I'm on a cortisol pump and doing much better but not great yet.
In context ↗ - Began after: COVID
I got sick March 5th.
Read from 16 of their posts and comments; links to the 11 this page draws on
Summary
Kestrel 35361 fell ill with COVID-19 on 5 March 2020 and was later found to have adrenal insufficiency, with cortisol too low for the lab to measure. Hydrocortisone made a world of difference, and after oral dosing absorbed poorly a cortisol pump brought a higher quality of life than before the illness. Long COVID symptoms had resolved by mid-2021, though dose-finding problems and a genetic adrenal condition kept them limited.
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What they tried
Also tried
Their words about each treatment
- hydrocortisone · Helped a lot
Being treated for low cortisol has made a world of difference.
In context ↗ - beta blocker · Helped
Beta blockers helped T the worst of times
In context ↗ - anti inflammatory · Not said
I'm also on an anti inflamatory
In context ↗ - extra salt in my diet · Helped
I also have to have extra salt in my diet to keep me from getting too lightheaded and passing out.
In context ↗ - vitamin D · Helped
Cortisol and vitamin D were both super low and treatment is making a big difference.
In context ↗ - IV corticosteroids · Helped
it takes IV corticosteroids and fluids to bring me back.
In context ↗ - oxycodone · Not said
The car wreck kicked off 12.5 yrs of oxycodone use.
In context ↗
Approaches: Hormones & thyroid · Other drugs and medicines · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2020-03-05 | COVID-19 illnessGot sick Match 5th. Being treated for low cortisol has made a world of difference.In context ↗ | Moderate | |
| 2020-08 | crashed hard with very low cortisol, passing outAfter that I crashed hard, my symptoms changed, and I got hit with low cortisol. Low enough the lab couldn't measure kinds of low. I was actually passing out even.In context ↗ | Moderate | |
| 2020-09-05 | hydrocortisone for adrenal insufficiency, getting back to normalNow, I'm still limited on working out by the heart issues, but I'm getting back to normal as we get the dosing figured out for the hydrocortisone.In context ↗ | Mild | Hydrocortisone / cortisol |
| 2021-06-07 | long covid symptoms gone but still symptomatic while hydrocortisone dose figured outAt least I seem to be done with the long covid stuff now! ... I'm symptomatic right now on 30mg/day of HC which my doc thinks is too much.In context ↗ | Moderate | |
| 2022-10-04 | switched to a cortisol pumpNow I'm on a cortisol pump and doing much better but not great yet.In context ↗ | Mild | Hydrocortisone / cortisol |
| 2023-02-02 | insulin pump of cortisol; higher quality of life than beforeI now wear an insulin pump full of cortisol since the oral meds weren't absorbing properly and have a higher quality of life than beforeIn context ↗ | Mild | Hydrocortisone / cortisol |
Adverse events
- Hydrocortisone / cortisol“15 in the morning didn't go well for me. I'd get all moody and cry after breakfast every day.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Heart symptoms & palpitations
now I only get the palpitations late in the day and evening
In context ↗ - POTS & dysautonomia
I also have to have extra salt in my diet to keep me from getting too lightheaded and passing out.
In context ↗ - Brain fog
my symptoms changed from too much adrenaline to crazy exhaustion and brain fog
In context ↗ - Sleep problems
After a bunch of not sleeping for a few days, I finally crashed
In context ↗ - Headaches & migraine
and to have this headache stop
In context ↗ - Gut problems
I just want to not be burping up my stomach contents constantly
In context ↗ - Pain & fibromyalgia
Everything was written off as chronic pain following a car accident
In context ↗ - Breathlessness
I didn't find much that helped, but it went away I for me around the 6 month mark.
In context ↗
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