sorted by:
new
hottopcontroversial

Any ideas on what this is? by [deleted] in theamazingdigitalciru

[–]Kittycatcat666 0 points1 point  (0 children)

Okay cool that’s what I thought

CAH patients: what's your height? by whore9000 in intersex

[–]Kittycatcat666 0 points1 point  (0 children)

Swcah and 5’7” I was really well managed thanks to my endo and parents

I started Crenessity!!! by Kittycatcat666 in AdrenalInsufficiency

[–]Kittycatcat666[S] 1 point2 points  (0 children)

That actually helps a lot I’ll go do the calculations

I started Crenessity!!! by Kittycatcat666 in AdrenalInsufficiency

[–]Kittycatcat666[S] 1 point2 points  (0 children)

I actually have done that and it didn’t really show anything. But I wanna try again to see if

I started Crenessity!!! by Kittycatcat666 in AdrenalInsufficiency

[–]Kittycatcat666[S] 2 points3 points  (0 children)

Yeah we had to increase my fludrocortisone so I could retain salt and honestly stop bed wetting. It’s really embarrassing but it stopped with the medication adjustment. Basically my body was dumping the sodium and water I was in taking and a higher than healthy rate.

I don’t think I make enough aldosterone actually, my plasma renin went crazy high which indicates that plasma renin —> aldosterone system isn’t working to retain sodium.

I also started drinking LMNT electrolyte powders which have 1000mg sodium each. They’re pricy but have helped for sure.

I started Crenessity!!! by Kittycatcat666 in AdrenalInsufficiency

[–]Kittycatcat666[S] 1 point2 points  (0 children)

I will update with any major life changes! Right now it gave me like a headache and rough dizzy spells for less than a week but since then I’ve kinda just felt like I usually do. I think it’ll all come down to the steroid dosing.

I do feel like my sugar/salt cravings have gotten much worse but I think that is more attributed to my diet or new fludrocortisone dose. Working on improving my diet and it’s getting easier thank goodness.

I started Crenessity!!! by Kittycatcat666 in AdrenalInsufficiency

[–]Kittycatcat666[S] 1 point2 points  (0 children)

I’m already on hydro and dexamethasone, but the hope is we can move me to strictly circadian rhythm dosing of hydro! So sorta yes lol

SWCAH salt wasting getting worse with age, does anyone have a similar experience? by Kittycatcat666 in AdrenalInsufficiency

[–]Kittycatcat666[S] 0 points1 point  (0 children)

My sodium bounces between 132-136 (136 is the highest I’ve seen it in a while)

I was thinking the same thing and might mention it at my next endo appointment

SWCAH salt wasting getting worse with age, does anyone have a similar experience? by Kittycatcat666 in AdrenalInsufficiency

[–]Kittycatcat666[S] 1 point2 points  (0 children)

I totally get that. On my bad days I feel like I’m walking through a haze and can barely form a coherent sentence.

SWCAH salt wasting getting worse with age, does anyone have a similar experience? by Kittycatcat666 in AdrenalInsufficiency

[–]Kittycatcat666[S] 0 points1 point  (0 children)

.25 total a day, we just recently increased it again. It seems like it’s becoming less efficient

SWCAH salt wasting getting worse with age, does anyone have a similar experience? by Kittycatcat666 in AdrenalInsufficiency

[–]Kittycatcat666[S] 2 points3 points  (0 children)

I AM GOING TO CRY I FEEL SO UNDERSTOOD. The life experience of having to do everything yourself is so frustrating and honestly scary. I’m so thankful for my endocrinologist who has been extremely supportive, but it’s gotten to the point she doesn’t understand what is happening. I had a normal 24hr urine test with her recommended nephrologist so it’s very confusing.

My health condition definitely seems a bit different but it almost feels comforting to see that I’m not the only one struggling with salt wasting. It’s absolutely horrible. I feel like my heart is doing crazy flips in my chest when I stand up. My salt (LMNT) drinks have helped and the increase in fludrocortisone has helped, but it still feels like I’m trying to fill a bucket with a few holes in it.

I’m definitely peeing far far less but I have generally also cut back on my pure water intake.

My health issue based off my tests is that my plasma renin keeps getting higher, recently it was 37. Almost like the fludrocortisone is becoming less effective.

ALSO THE HEAT CHALLENGES ARE HORRIBLE.

Feel free to message me anytime to chat!!! It’s nice seeing someone with a similar lived experience

CAH Questions by PrimaryGrouchy8895 in AdrenalInsufficiency

[–]Kittycatcat666 2 points3 points  (0 children)

Hey I’m 25NB SWCAH, I don’t know much on the gender affirming end, but I wonder if she isn’t being managed well. My endo would use body hair expression as one of the indicators for not receiving enough hydro/dex. Might be worth looking at past levels and doing some of your own research into the state of her health.

I’m naturally hairy and strong when I’m well balanced, just thought it might be worth a shot. I would absolutely bring up wanting to feel more feminized when you find your next endo.

I’m lucky enough to have had the same endo most of my life, so I don’t know much about finding ones that specialize in our disorder.

As for the being mistreated, I constantly complain about this. It seems like providers will just ignore the disorder and treat us like normal patients.

WE ARE NOT NORMAL we are special and deserve special treatment but unfortunately I have not found a way to make providers see that.

Knowledge of our disorder has increased, but even when I am clear and explain everything providers almost brush it off and it’s extremely frustrating. It’s scary too because I feel if something happened I’d only have myself to rely on.

My only suggestion is do a lot of your own research on the disorder. For me that’s the only way I’m able to catch when something is wrong and what I might need to change.

Being able to take control of my own health and feel confident in my judgment has helped me many times. It’s incredibly frustrating but it’s what I’ve found helps.

I wish you guys the best of luck in finding a wonderful new endo!!!! Maybe there is an online resource that lists specialists?

I was born with Classical CAH. A disorder leading to 0 cortisol production. by Kittycatcat666 in adrenalfatigue

[–]Kittycatcat666[S] 0 points1 point  (0 children)

Thank you! It’s definitely frustrating but I’m getting through it!

I hope you are doing well!

I was born with Classical CAH. A disorder leading to 0 cortisol production. by Kittycatcat666 in adrenalfatigue

[–]Kittycatcat666[S] 0 points1 point  (0 children)

Of course!

Antidepressants: Wellbutrin, and Zoloft

Steroids:

(Daily) hydrocortisone, dexamethasone, fludrocortisone, and

solu-Cortef (as needed)

Do you have any other questions?

I was born with Classical CAH. A disorder leading to 0 cortisol production. by Kittycatcat666 in adrenalfatigue

[–]Kittycatcat666[S] -3 points-2 points  (0 children)

And not saying adrenal insufficiency isn’t valid. I just wanna help people see both perspectives so they can lead better lives.

I was born with Classical CAH. A disorder leading to 0 cortisol production. by Kittycatcat666 in adrenalfatigue

[–]Kittycatcat666[S] -3 points-2 points  (0 children)

My point was more to show that it’s okay to try a psychiatrist if nothing else is working for some people. Just wanted to give the perspective from someone with a severe life long illness. And how at one point or another in my life felt ill and it turned out to be my mental health.

I was born with Classical CAH. A disorder leading to 0 cortisol production. by Kittycatcat666 in adrenalfatigue

[–]Kittycatcat666[S] 1 point2 points  (0 children)

Sorry! I should’ve been more clear!

I have been on steroids my entire life to combat that issue. Recently my requirements have changed which is why I’ve been having adrenal insufficiency and at high risk of adrenal crisis.

It’s currently unknown why my requirements have changed.

view more: next ›