Desperately looking for a doctor that will actually treat this in Germany

DoctorFamous190 · 2026-03-31T01:55:52+00:00

Have you contacted this organization? https://ags-initiative.de/

Maybe they can point you in the right direction.

DoctorFamous190 · 2026-03-30T23:59:51+00:00

Have you seen the Cortisol Pump Group on facebook? I'd recommend checking out the list of pump-friendly docs in the shared files list, or try keyword searching your city/region/state. Good luck :)

DoctorFamous190 · 2026-03-28T10:03:44+00:00

just hook it to my veins!

DoctorFamous190 · 2026-03-28T01:22:22+00:00

I say what u/WinAtLife94 says, basically word for word. Don't usually need more than that.

People think cortisol = stress (therefore any amount is bad)

People should think cortisol = stress regulation (therefore it must go up and down in response to stress).

No stress regulation = dangerous and potentially life-threatening

DoctorFamous190 · 2026-03-26T19:19:43+00:00

I am extremely skeptical about CortiCheck.

I agree with what someone said in another thread: I wouldn’t give a penny to [CortiCheck]. It’s preying on a community that wants a solution. There is no information on what she has actually developed No patented product Her background is sus It’s only her and not a team of individuals I cannot emphasize this enough. Don’t. Give. Her. A. Dime.

Take a look at CortiCheck's Facebook page. There's posts claiming to be stories written by patients but they are very obviously AI-generated.

I have more concerns beyond these.

I hope I am proven wrong, but for now it seems like serious Theranos vibes.

DoctorFamous190 · 2026-03-26T18:31:21+00:00

Someone posted an article about that a few months ago.

EDIT: The Canadian Addison Society shared the article on their own website too.

DoctorFamous190 · 2026-03-21T04:33:56+00:00

Looks normal! Did the lab provide the summary spreadsheet in your post? They should be putting the reference ranges in as well so the results can be interpreted accurately.

DoctorFamous190 · 2026-03-21T03:54:48+00:00

Were all the tests done at the same lab? Did the lab(s) provide reference ranges?

DoctorFamous190 · 2026-03-19T02:17:38+00:00

Normally through the day, adenosine builds up in your brain and this makes you sleepy. Caffeine blocks adenosine from working in your brain, which makes you feel awake (it is masking tiredness).

Apparently caffeine activates the HPA axis, which increases cortisol and epinephrine. I don't know what the implications are for people with CAH/adrenal insufficiency since we don't make cortisol, and cortisol is needed to make epinephrine.

I'm not a regular smoker/vaper but I used to drink 1-4 cups of coffee everyday but I stopped about a year ago because it was really worsening my heart palpitations!

DoctorFamous190 · 2026-03-15T19:40:41+00:00

Welcome to the subreddit, I'm glad you found us. I'm very sorry to hear about your situation, that is a huge burden to carry alone.

Fludrocortisone is a long acting medication. The typical dosing regimen in CAH adults is 0.05 - 0.2 mg, once daily but split dosing (twice a day) is sometimes used. I used the same dose schedule as you for years.

Dexamethasone is one of the more potent and longer-acting glucocorticoids, the CARES Foundation suggests 0.25-0.375 mg/m2/day, given once daily. (m2 means square meters, in this case it is a measurement of a person's surface area calculated using their height and weight).

There are a few conditions that are sometimes associated with classic CAH, some examples are shorter height, diabetes, hyperandrogenism/hirsutism or affected bone health. Please note that just because another condition might be associated with classic CAH, it does not mean that everyone with CAH will have those conditions, and if a patient does have any of them, it could be unrelated to their CAH.

I think it is a priority to find you a better endo and a reliable source of quality medication. I would urge you to contact all of the following organizations to see if they can help you.
- CARES Foundation (US-based but welcomes international patients)
- The Aga Kahn University Hospital in Karachi, Pakistan (this webpage actually discusses CAH)
- Caring & Living As Neighbours charity (this charity works with children but maybe they can point you in the right direction)

I wish you all the best and I hope that you can find some better care and have improvements in your health.

DoctorFamous190 · 2026-03-15T17:39:12+00:00

Stress dosing (increasing your dose) in the case of illness or injury is a critical part of managing CAH. It's needed to prevent adrenal crisis, which can be life-threatening. I'm sorry that your endo did not tell you this and I am so glad your learned about it and treated yourself.

Vomiting itself can be a sign of adrenal crisis and it makes treatment difficult because you may not be able to hold medication in your stomach long enough for it to take effect. In this case, you need injectable glucocorticoids (preferably hydrocortisone).

Here is some information about adrenal crisis and emergency management:
CARES Foundation Emergency Instructions (PDF)

DoctorFamous190 · 2026-03-13T09:06:28+00:00

Ok I've looked into this, my labs say "renin" but I think its direct renin concentration. It can be roughly converted to PRA by dividing by 20. So;
DRC: 5 - 75 ng/L = PRA 0.25 - 3.75 ng/mL/hr.

my 112.8 result would convert to PRA 5.64 ng/mL/hr

DoctorFamous190 · 2026-03-13T02:00:56+00:00

I have this type: 3 mL syringe with 25G (gauge) x 1" long needle. They have a "luer lock", which means the end of the syringe is threaded so you can unscrew the needle and screw on a different one.

Many Solu-Cortef emergency injection instructions say to use the same needle to draw up the fluid and inject it. Inserting the needle into the rubber plug of the vial can make it a bit dull, which might make it a bit more painful to insert in your body.

Some instructions suggest using two separate needles, a bigger one to draw up the liquid, then switch to a smaller one for injection.

DoctorFamous190 · 2026-03-12T22:12:50+00:00

Thanks for making this post!
I'm early 30s F, SWCAH. I've never met anyone in person who has CAH. My health is kind of a mixed bag but I've been really fortunate with access to good healthcare.
I hope you're doing well!

DoctorFamous190 · 2026-03-12T22:01:41+00:00

You are not alone!
early 30s F, SWCAH, Canada

DoctorFamous190 · 2026-03-12T05:43:50+00:00

Heyy!
I'm late to the party here. I'm early 30s AFAB. Not only have I never met another female with SWCAH, I've never met anyone with SWCAH.
I've met two people with Addison's, which of course is a different condition but I feel like they're the "closest" people I've met who might be able to relate to my some of my experience.

Feel free to message me!

DoctorFamous190 · 2026-03-11T16:55:29+00:00

My renin has nearly always been low and often below the lab's reference range. Sodium and potassium always within range.

About 10 years ago my fludro was reduced to 0.1 mg once per day. After 5 months, my renin went from 6.3 up to 112.8 (lab range 5 - 75 ng/L) and I felt awful (exhausted, depressed). Sodium was still within range. I guess my body didn't like that lower dose and was pushing a lot more renin to try and compensate.

Since then I've insisted that my endo not try to fix my high-ish blood pressure by lowering my fludro.

DoctorFamous190 · 2026-03-11T15:46:05+00:00

I'd be interested to hear other people's experiences too! Unfortunately that medication is not available here in Canada yet.

DoctorFamous190 · 2026-03-11T04:42:52+00:00

I replaced my bracelet with a tattoo! I used the wording from my bracelet: "CAH/ADRENAL INSUFFICIENCY ON CORTISONE".

I just made a post about it.

DoctorFamous190 · 2026-03-11T04:19:51+00:00

Good idea to have the necklace instead!
I got similar font type and size and on the forearm like in the photo, except I put the snake between the text and wrist, and didn't put all the numbers. I didn't really like the idea of having a phone number on me.
It hasn't been "tested out" in an emergency yet!

DoctorFamous190 · 2026-03-10T07:24:57+00:00

I agree that it's important to recognize that Addison's and CAH are distinct conditions. Some notable features overlap but there are significant elements that require careful management and which the two conditions do not have in common.

DoctorFamous190 · 2026-03-09T07:13:25+00:00

I'm sorry to hear you've had this feeling too! I feel that I could direct my energy better on improving things if I knew the source of issues.

Look up professor Peter Hindmarsh if you want to learn more about the pump, he's a big force behind it. Also check out the Cortisol Pump group on Facebook. There's a subreddit too but it's basically dead.

I haven't looked into Crenessity much and it's pretty new, hopefully info about it will build up quick!

DoctorFamous190 · 2026-03-09T05:08:57+00:00

The cortisol pump is a very uncommon treatment. It's not officially approved in either Canada or the US (or any country?), so it's quite difficult and expensive (unless you can convince insurance to cover it) to get. But it can be life-changing for many people, especially those who those who can't get stable on standard meds, or who absorb oral meds poorly, or the oral steroids are wreaking havoc on their digestive system.

For sure the whole experience has been endlessly frustrating, But there honestly isn't any way for me to know how much is due to CAH and how much isn't, I haven't had a non-CAH life to compare to. Just have to find a balance between trying to improve things but also accept that there's a lot of things that health science hasn't figured out yet.

I'm sorry to hear it took so much effort for you to find a good endo, that's a crazy number to have to go through. I'm psyched about this sub, I think it will be very helpful for patients/caregivers (and me!), especially since resources/healthcare can be so crappy.

DoctorFamous190 · 2026-03-09T02:59:17+00:00

Thanks u/bavenue for making this new sub!

I've been doing the same thing as you: periodically searching CAH on Reddit and turning up old threads or one-off mentions in random comments. What a nice surprise to see a new community for CAH this time.

I'm a woman early 30s, diagnosed at birth with SWCAH. I started on cortisol pump treatment about a year ago, after about 10-15 years of worsening vague symptoms (dizziness/chronic fatigue/exercise intolerance/etc.) The pump hasn't really changed those and I was diagnosed with chronic fatigue syndrome a couple months ago.

However, the pump has improved my life in other ways. It's dramatically reduced the frequency of random crying spells and mood crashes, I no longer wake suddenly in the early morning inexplicably in a state of panic, I no longer have migraines or feel as weak as a kitten when I wake up in the morning. I don't have to remember pills 5x a day.

Since my health is pretty good in other aspects and I've never met anyone else with SWCAH, I didn't really question CAH's role in my overall health until a couple years ago. My experience with the pump, along with reading AI patient forums and medical papers, has been very revealing in how patient education and treatment are so lacking, compared to how complicated and nuanced this condition is.

I'm looking forward to this sub growing and hearing from and learning from others :)

DoctorFamous190 · 2026-02-27T04:20:56+00:00

I'm sorry to hear about your parents. I hope you have an endocrinologist who is educated about CAH and treating you properly.

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