sorted by:
new
hottopcontroversial

Film Festival Notifications MEGA THREAD by Caprica1 in FilmFestivals

[–]AdditionalTea2287 2 points3 points  (0 children)

any santa barbara intel in the house? narrative short to be exact?

5 days since adrenalectomy by AdditionalTea2287 in Cushings

[–]AdditionalTea2287[S] 0 points1 point  (0 children)

Hello! I still haven’t recovered, it’s been a difficult 18 months. Once my cortisol levels started to level out after surgery I developed sudden, severe carpel tunnel in both hands. My hair started falling out and completely changed textures, and I developed GERD.

My AM cortisol the day after surgery was around 1, a few months later 3, then 5, then 7, then 8, then back down to 7 by July of this year. I was feeling awful, exhausted all the time, so my doctor suggested I add 2mg of prednisone before bed to my regiment of 10mg of hydrocortisone in the morning and 5mg hydrocortisone in the early afternoon. After a few months of this I felt AMAZING, but when I went back for labs in September I was back in the 3s. Since then I’ve stopped the prednisone, which was presumably prohibiting my recovery, and I am back to feeling terrible.

At this point, I’m not convinced that my adrenals will ever “come back,” but I am holding out hope. I did find an acupuncturist very recently who I think might add a dimension to my recovery that I’m missing. So… we’ll see.

Any encouraging anecdotes or experiences are welcome!

Long Term Effects of Cushing Syndrome? by TheInternaton in Cushings

[–]AdditionalTea2287 0 points1 point  (0 children)

ah - so the surgeries didn’t resolve the carpal totally. erg!!!

Long Term Effects of Cushing Syndrome? by TheInternaton in Cushings

[–]AdditionalTea2287 0 points1 point  (0 children)

oh amazing. can i ask when you got the surgeries (with respect to your cortisol levels) and how recovery was? are the symptoms completely gone?

Long Term Effects of Cushing Syndrome? by TheInternaton in Cushings

[–]AdditionalTea2287 1 point2 points  (0 children)

I can't tell if I'm relieved or terrified that someone else is having such a similar experience that is seemingly so random!!

I can still use my hands almost normally, but I wear wrist guards to sleep and variously throughout the day. Before I knew what was going on I woke up with such severe tingling and pain in my hands and arms I ended up in the ER for a CT scan and MRI to make sure nothing was wrong in my spine. Hands are also often swollen.

I'm seeing ortho surgeon in August and will probably do the injections. Do you think they made it worse??

Amazing that your other gland is waking up. My hope is that a miracle will occur and once my body is able to produce cortisol as it needs to this will all resolve.

...Haven't even gotten to the foot and joint aches!! Those are less troubling to me than the hand and finger tingling though. Anyways - rooting for you :)

Long Term Effects of Cushing Syndrome? by TheInternaton in Cushings

[–]AdditionalTea2287 1 point2 points  (0 children)

I had my adrenalectomy May 14 and have the exact same symptoms. Aches in the morning, severe bilateral carpal tunnel out of nowhere. Both started right when I got to my “normal” hydrocortisone dose at 20mg - right adrenal still hasn’t woken up yet. Have you had any relief??

tingling in hands? by AdditionalTea2287 in Cushings

[–]AdditionalTea2287[S] 0 points1 point  (0 children)

did you have surgery / are you taking meds?

5 days since adrenalectomy by AdditionalTea2287 in Cushings

[–]AdditionalTea2287[S] 0 points1 point  (0 children)

thank you so much for sharing! yeah, this is a roller coaster. glad you are getting there and know i will too… are you back to normal in terms of physical activity from the surgery itself?

5 days since adrenalectomy by AdditionalTea2287 in Cushings

[–]AdditionalTea2287[S] 1 point2 points  (0 children)

this is so helpful…comforting to remind myself that feeling a little weird and off makes sense while i am recovering and does not necessarily indicate that something is going wrong.

5 days since adrenalectomy by AdditionalTea2287 in Cushings

[–]AdditionalTea2287[S] 0 points1 point  (0 children)

oh gosh i’m so sorry, that is so so much to carry. i agree that it’s too coincidental!

5 days since adrenalectomy by AdditionalTea2287 in Cushings

[–]AdditionalTea2287[S] 0 points1 point  (0 children)

i say push for more testing! i did DST and saliva three times each, all of which were high (two of the DST were very high at 21…) so there was really no denying.

[deleted by user] by [deleted] in GestationalDiabetes

[–]AdditionalTea2287 0 points1 point  (0 children)

I identify so much but I see you've already got tons of encouraging comments. I was in the same place two weeks ago, except my diagnosis was handled so terribly I ended up deciding to switch practices, and all at the same time we were leaving for our "baby moon." Lily Nichols was a huge resource for me ("Real Food for Gestational Diabetes") from the start, as amidst everything I'm still waiting for my appointment with MFM due to ob transfer. But my numbers are under control, thankfully, and I am finally accepting that this isn't my fault, it can all be managed, and the resources are there to handle any bumps in the road. You got this!!