So my problem started after one year of hydrocortisone. This was 2 years before I knew I had Lyme.
After tapering off I couldn't exercise anymore without feeling very tired two days later. I believe it was a mild form of secondary adrenal insufficiency.
In 2017 I received an acth injection to do a acth stimulation test to see what was wrong with the hpa axis. For some reason, after that injection I could do everything again without backlash. But it took me many months before I realized, I was always very careful to not over exert myself. So I didn't realize how much I had improved.
At some point I took a Chinese herb that raised cortisol. I felt amazing for one week then I became super tired and sick, weird grey/brown-ish patches appeared on my abdomen. I suffered a lot for a year. Then in 2019 I tried an acth injection again and I got the same positive result. I could walk, exercise etc. But it wasn't perfect yet so a week later I did two more acth injections and I had the same problem. Weird skin patches, super tired.
I now realize that everything was caused by my thyroid not working properly. Too much cortisol -> thyroid couldn't keep up and seemed to down regulate (? not sure if that's the proper term) itself.
Later that year I came across this study:
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc2613527/It's mathematical model about
resetting the hpa axis by pushing cortisol lower so the feedback loop would kick in and adrenals start producing more. I used mifepristone. It worked.
Long story short, I found out that raising cortisol by acth injections or caffeine or other medicine raise cortisol production, permanently establishing a higher baseline for the hpa feedback loop. Which cures my pem. (If we can call it that). But repeating the same process after a short amount of time pushes it too high and my thyroid can't keep up. It also works by lowering cortisol: mifepristone, metyrapone. It sets a higher baseline. For some reason, thyroid is ok with a higher baseline but when I raise it even further that's when I start to feel tired or cold.
I never understood why the feedback loop seemed so sensitive to the slightest external stimuli that raised cortisol. But it all makes sense now. It's the inflammation inhibiting t4 to t3 production. Pem / herx also disappear on high dosages of Japanese Knotweed (anti-inflammatory) but that gives me Raynaud's disease.
I have no antibodies and my tsh, t3, etc is normal. But those values were never tested when I felt very tired or was feeling shivering cold.
I'm still having adhd like energy after yesterday.
I can feel more energy one hour after my herbs so I can feel the hpa axis producing more cortisol and my thyroid keeping up. It's nice even though it feels like I drank 1 liter of coffee. :D
But it's also clear that the amount of selenium and iodine I took was too high. I think my thyroid is overstimulated now. Will have to find a way to properly tweak it. I'm concerned of it turning auto-immune or overcorrecting and becoming hyperthyroid.
But yeah, I'm optimistic. I think I will finally be able to exercise again. After more than 10 years!!
Edit:
I want to add that no doctor I ever told this problem to, even endocrinologists, never suggested it could be linked to my thyroid... They just said I needed to see a therapist...
Second edit:
I have also realized why colchicine was making me so tired and undermined my immune system.
Bing bot said...
According to the sources I found, colchicine is a drug that can affect the thyroid hormone synthesis and metabolism in various ways. Some of the possible effects are:
Colchicine can inhibit the organic binding of iodine in the thyroid gland, which is a necessary step for the formation of thyroid hormones1.
Colchicine can also reduce the formation of iodothyronines, such as T3 and T4, and lower the ratio of diiodotyrosine (DIT) to monoiodotyrosine (MIT), which reflects the efficiency of thyroid hormone synthesis1.
Colchicine can interfere with the stimulation of thyroid hormone synthesis by TSH and cyclic AMP, which are important regulators of thyroid function1.
Colchicine can suppress the oxidation of glucose and formate in the thyroid gland, which are sources of hydrogen peroxide (H2O2), a key component for iodination and coupling reactions in thyroid hormone synthesis1.
Post Edited (Vimzor) : 7/23/2023 9:43:21 AM (GMT-8)