9 replies to this topic

[Vimy]

Age 31. Male.

2012: Only two months hydrocortisone (HC). 25 mg. But took one year to taper off. Misdiagnose by quack doctor that prescribes everyone HC. Didn't know.

2013 - 2017: Feel sick, dizzy, weak after 'stress event': Excercise, long walks, arguments with people, driving, ... Limited in what I can do. If I overdo it, I get a backlash, feel very weak and ill, can hardly walk or open doors without great effort, I'm like a 90 year old. This happens the second day after a 'stress event.'

Day 0 / Stress day: Weak, dizzy after event, back to normal after an hour or two

Day 1: 'Normal'

Day 2: 90 year old

Day 3: 'Normal' again

 

 

2017: Can finally convince doctor to do ACTH stimulation test. Feel superb that day. Finally feel normal! Test show adrenals work ok.

I'm now convinced I have a mild form of Secondary adrenal insufficiency. Doctor say it's impossible, no such thing can happen after steroid use. Thinks my complaints are psychosomatic.

After ACTH stimulation test, something permanently changed. I can do more than before. Longer walks without feeling ill. I feel better in general. Still not normal reaction, I want to be normal again. I keep looking for solution.

2018: Read study claming Rehmannia Six (herb) resets HPA axis. I try it.

Rehmannia treatment also prevented or reversed morphological changes in the pituitary and adrenal cortex, appearing to antagonise the suppressive effect of >glucocorticoids on the hypothalamic-pituitary-adrenal (HPA) axis.8 Such inhibition of the negative feedback of glucocorticoids on the HPA axis by Rehmannia >could explain a trophic effect on the adrenal cortex.9 https://www.scienced...annia-glutinosa

 

 

First week I feel normal again, like before HC! Yes! It's working! Starting daily pushup routine. Second week I'm feeling weak and nauseated after my pushups. I stop the Rehmannia. Opposite effect of the ACTH test. I'm worse than before now. Severly limited in how much I can walk or other stress events. Feel nauseated afterwards. Starting to notice greyish spots on my torso and my cheek. Very subtle, not really noticable but they are there.

2019: Still worse than before the Rehmannia but slightly improved. No more nausea. Decide to replicate the ACTH stimulation test. Synacthen injection. Again, feel better. Can exercise without feeling sick. Seems to have permanently changed again. One week later try Synacthen again, thinking it will improve me even more. Feel sick after exercise but it's milder than usual. Thinking it was a fluke, try synacthen again three days later. Feel very sick that day (without exercising). Feels like the second day after a stress event, feels low cortisol. I feel very stupid because I should have stopped with the first injection.

 

The synacthen was without doctor because they refuse to help me. Went to doctor, told what I did, doctor again tells me Secondary adrenal insufficiency is impossible. Refuses to test my blood because she learned in school morning cortisol can only be tested at 8 AM. Doesn't understand I always wake up at noon so it was morning for me and refuses to help me. Doesn't understand the gravity of the situation. Useless.

 

Tried mifepristone on my own in May - August. 

3 doses of 200 mg. Spread over several weeks. It worked! I can exercise, I can handle (emotional) stress. Feels the same like 2017, after the very first synacthen injection.

Then one month ago, I got a toe infection. Started spreading to my leg. Had to take antibiotics but I waited to long (wanted to protect my gut). A couple days before I started the antibiotics I started to feel my cortisol go lower. Until it was really low and I panicked and asked for another synacthen shot. Big mistake. Seemed to have undone the mifepristone effects. Back to how I was before the mifepristone. Maybe slightly better than how bad it was. Still very bad.

Then last week my genius doctor thought Wellbutrin XL 150 mg would solve it. One pill made it even worse. So I'm back to how I was right after the rehmannia. 

To make matters worse, I think the mifepristone did something with my cortisol receptors. I feel low cortisol but when I take just 1 mg hydrocortison or supplements to raise my cortisol I feel it going even lower. Before the mifepristone, those supplements helped.

 

These make me feel worse now.:

Licorice root 

5-htp (raises acth)

Caffeine pill (raises acth)

pantothenic acid (building block for cortisol)

D-ribose (building block for cortisol)

American Gingseng

 

 

Current symptoms:

Light nausea when I wake up

Weak, low energy

Can't handle (emotional) stress. Very sensitive to stress.

Very subtle grayish spots.

Limited in movement. Only a couple hundred meters.

When cortisol is really low:

Muscle pain in arms and legs. Feel like throwing up. Very weak.

 

 

Observations:

- Hpa feedback loop seems very sensitive now.

- My cortisol levels are in range at the low-end but I believe they are too low for me personally. On the second day after stress event, when I feel really bad and weak, they are lower than on 'normal' days. 30 % lower. They are on average 50 % lower than before I took hydrocortisone in 2012.

- I feel a weird pain in the back of my head when I exercise too much/experience too much stress. It's like a spidey sense warning me I will be sick the next two days. 

- Afraid to take mifepristone a fourth time. The last time I felt flu-ish for a week and my skin felt on fire for random periods of time.

I attached a timeline. Thoughts? Ideas? 

 

Attached Files

•  Timeline.png   477.22KB   0 downloads

Edited by Vimy, 18 October 2019 - 03:27 PM.

[Vimy]

Bump.

No one has anything to add?

I'm going try 250 mg of Metyrapone. I'm hoping it will have the same effect as the mifepristone. My endo didn't think it could hurt. But tbh, he's just as clueless as I am about this whole thing.

 

[Seganfredo]

Dude. We're on the very same boat.

You don't know how much I feel like murdering doctors when they say it's all psychological and stress. THAT gets me stressed. I feel like killing those effin idiots.


I've got the exact same symptoms you mentioned - and I've considerably improved,
but there's still some 30% to go. The spots you mention are in my hands right now as I'm typing cause I've cut down many thick branches of trees around here and carried them around, 100s of kg (and a year ago they were in my upper stomach).

I do think I've FINALLY found what will solve this - could not experiment with it yet, but my years of research lead me to calculate squarely that this will solve the problem long term:

HYDROGEN PEROXIDE 35% FOOD GRADE. This may be the last, best answer to the problem.

I'd post a link to a response I gave, but it's crap to use this forum with a cellphone.

Do check the responses in my profile. You'll find loads of info.

I'm actually happy someone else has the very same symptoms I've had. Means I'm not that crazy.

Bump.
No one has anything to add?
I'm going try 250 mg of Metyrapone. I'm hoping it will have the same effect as the mifepristone. My endo didn't think it could hurt. But tbh, he's just as clueless as I am about this whole thing.

[Vimy]

I took one pill of 250 mg Metyrapone for 5 days and things improved. I can walk longer distances now and I'm more resilient to (emotional) stress. Going to attempt 1 gram next week.

 

[Seganfredo]

U a fucking bot?

[Vimy]

Yes. Beep. Boop.

I looked at your profile, didn't find it useful and posted an update.

[Seganfredo]

Good. Keep suffering unnecessarily a bit longer then, bot.

[DaveX]

I also feel like my HPA axis is messed up, slightly dissociated most of the time, some kind of emptiness inside and not really motivated to do anything. In my case it's probably the HPA axis being suppressed, or cotisol having some kind of suppressive action on the hippocampus and other areas. Apparently HPA-axis-like receptors, like the glucocorticoid receptors (the whole matter is always pretty unclear, so I say HPA-axis-like receptors), can regulate glutamate and dopamine: https://www.ncbi.nlm...pubmed/23590841, and the HPA axis during stress can suppress the hippocampus and can even cause it to shrink and get damaged over time (wikipedia and other things).

Anyway, while lots of herbs are said to have some effect or other on the HPA axis, I've found that only Rhodiola Rosea (salidrosides) and Schisandra (only the best extract or lots of powder) can have a noticeable effect on it and temporarily reverse the blunted affect or "emptiness" inside. However often they feel rotten at first, indeed quite similar to what your description of "nausea" and weakness sounds like. Also the "flu-ish" feeling of Mifepristone you mention. They also cause a heat-reaction, which is probably caused by an effect on TRPV3 receptors, which are responsible for that (also for example of frankincense and things like that).
But when their effect wears off, I feel much better than before. I don't know how you can apply this to your case. It seems you don't have this suppressive action on the hippocampus or wherever, but a weak HPA axis, which might be what Rhodiola and Schisandra simulate at first and therefore they sound similar. I guess I also have a "weak HPA axis" in some sense, but at the same time some cortisol switch seems permanently locked in a state of suppression also. I don't really know how it all works or if there is any similarity or relevance, but HPA axis certainly drew my attention, and Schisandra and Rhodiola are the only herbs with a noticeable effect in my experience.

Edited by DaveX, 22 February 2020 - 05:35 PM.

[Vimy]

An update: The Metyrapone worked. I took 5 pills of 250 mg and could walk, exercise etc almost like normal. But then I think I got covid and it messed everything up again. Because the last time I took 5 pills it made everything worse and covid symptoms appeared. Sigh.
 

[Vimy]

Update:

I finally understand everything.

 

It was reverse T3 all along...

 

The things I tried accidentally helped to uprelegate the thyroid feedback axis. Too much cortisol produced too much reverse T3 and it caused hypothyroid symptoms.

For some reason I don't understand yet, messing with the hpa axis, up relegating it, raised the T3 / cortisol limit and I could have more cortisol before reverse T3 appeared. That's why I was feeling better.

 

T3 / cortisol limit isn't the proper term but I hope people understand what I mean.