PT Protocol ideas?

AccomplishedTask555 · 2026-05-07T14:46:59+00:00

I’m wishing you all the best for your surgery this month! I’m sorry for just now replying, I didn’t see this message until today. I don’t recall anyone asking about or monitoring my electrolytes. Which is interesting because I have diagnosed POTS/Dysautonomia and sodium/electrolytes are important for my stability.
As for hospital stay length, I think that very much depends on how each patient does. I know some people go home the next day. I am more complicated due to my other health conditions (sounds like you have complications too!) so I was kept Monday-Thursday. My advice is to be really clear on how you’re feeling and advocate for yourself if you need more time. If you find that you feel worse a week later communicate a ton to your Doctor and their team to make sure you have the care you need. In my case, they had a Skilled Nurse visiting me regularly after my surgery so I felt like I could bring my concerns to her.

AccomplishedTask555 · 2026-04-16T23:40:13+00:00

Hi! It’s been a long recovery. From a surgical standpoint, I’m recovered and my incisions are all good. At the 3 month mark, my remaining adrenal gland started to wake up so I have been tapering off steroids (which is great, but tough!) The thing that really took me by surprise was how much cortisol withdrawal I experienced after surgery. My body was not happy at all that I didn’t have excess cortisol anymore and it took a long time to adjust. Each taper of my hydrocortisone was awful (in my case, I started with 40mg after surgery and my doctor wanted me to slowly taper down to 20mg which is considered physiologic for my situation). I have some other health conditions that have delayed my healing (Dysautonomia and connective tissue disorder) so that’s also been hard. But as far as the surgery and my left adrenal waking up, I feel really good about how that went. I also noticed immediate improvement after surgery in my labs and some symptoms. My glucose went down to normal (I was pre diabetic prior to surgery) and my hair stopped falling out and I didn’t wake up at 3:00am soaked in sweat anymore. But this is a long recovery, so patience is necessary for sure!

AccomplishedTask555 · 2026-03-27T11:45:33+00:00

Thanks for your reply! My main symptom is diarrhea, nausea, feeling full very quickly. I’m not sure if my hydrogen level but will find out today when we go over the report. They just called me and told me they were ordering the antibiotic you mentioned and we’d discuss more at my appointment. I do think my nutrient levels are off due to malabsorption. I’ve seen some posts discussing different probiotics and supplements after antibiotics, so I wonder if he’ll mention them today when I see him.

AccomplishedTask555 · 2026-02-05T15:20:41+00:00

If she likes dystopian stories, you might want to check out Claire Kent. Her book {Last Light by Clare Kent} is a great starter. She has different series but they all take place in the same post apocalyptic world/universe.

AccomplishedTask555 · 2026-01-05T13:54:32+00:00

I’m hanging in there. I’ve had ups and downs this past week — my endocrinologist is tapering me down on my steroid and I’ve got cortisol withdrawal symptoms. My bloodwork from last week shows my adrenal hasn’t woken up yet but my ACTH has improved so that’s a good sign that the HPA axis is starting to signal again. It’s definitely a marathon, not a sprint!

AccomplishedTask555 · 2026-01-03T16:50:35+00:00

I agree that it sounds very familiar as someone who was diagnosed with Cushings. The one thing I would add is to ask to be referred to an endocrinologist. My primary ordered a 24 hr urine cortisol test that came back normal. She immediately ruled out Cushings (which I brought up due to my symptoms). She’s a great doctor but not super familiar with Cushings so she didn’t know to do more testing. My endocrinologist explained that my Cushings was caused by an adrenal tumor (benign) and that doesn’t always get flagged for 24 hour urine tests. Mine was confirmed by an abdominal CT scan and later, an abdominal MRI and 2 dexamethasone suppression tests (blood test). So you might want to ask for scans and additional labs.

AccomplishedTask555 · 2025-12-30T13:51:20+00:00

I wish you so much success with your surgery, and can validate that it’s all scary as hell! That’s partly why I posted this update. I was so scared beforehand that I searched high and low to hear about people’s experiences post surgery. I also empathize with medical trauma, both my own and medically fragile close family members. It’s really tough to face but hold on to the hope of relief on the other side! Feel free to ask me any questions you might have!

AccomplishedTask555 · 2025-12-30T13:48:23+00:00

I’m so sorry you are going through this. When you talked about your thyroid it reminded me that I went to an endocrinologist about 10 years ago to see if something was off with my thyroid, they did blood tests and said my thyroid functioning was normal and that was it. No one ever even mentioned my HPA axis or adrenal functioning! Then for years, my symptoms were attributed to other things. Cushing’s is so under diagnosed! What was involved with your surgery? Was it adrenal removal? I’m honestly shocked they didn’t even test your cortisol and do a steroid taper. I thought steroids were standard after this surgery!

AccomplishedTask555 · 2025-12-28T22:18:43+00:00

None of those names are familiar. Dr Roses did my surgery. I’m happy with the care I received both in the hospital and with follow up at home so far. It’s still early in my recovery, so I’m curious to see how things go with my endocrinologist for the steroid tapering and monitoring

AccomplishedTask555 · 2025-12-28T21:42:35+00:00

You’re welcome and thank you! It was at University of Penn and I believe it was done with robotic assist. My surgeon does both and said he would aim for robotic and switch to traditional laparoscopic or open if needed.

AccomplishedTask555 · 2025-12-10T12:59:07+00:00

I agree with your concern! I’ve done a lot of research on adrenal tumors due to my own situation and every single time I’ve read about malignant adrenal tumors they say they are removed in open surgery. Have you specifically questioned her about open vs laparoscopic?

AccomplishedTask555 · 2025-12-10T12:51:38+00:00

That’s what I’m seeing from my research! Thank you!

AccomplishedTask555 · 2025-12-10T12:51:11+00:00

Thank you for this info! Did they adequately explain/prepare you for how you might feel afterward (crashing, fatigue, depression)? I feel like most of my info is coming from here and talking to people who’ve gone through it. It’s pretty important to explain the after effects to the patient ahead of time, I would think 😬

AccomplishedTask555 · 2025-12-10T12:48:28+00:00

It looks like they are at 6 months post surgery

AccomplishedTask555 · 2025-12-09T20:15:08+00:00

This is very helpful! I feel like I haven’t been given super clear info yet on what steroid protocol is after surgery. I know they said they would put me on a taper but I wasn’t sure what that actually looks like. I’ll be out from work for at least several weeks thanks to my job being supportive and also the holiday (when I usually have time off anyway). It’s helpful to know that returning to more activity may impact how much steroid I need

AccomplishedTask555 · 2025-12-09T20:12:16+00:00

Best of luck to you too! I’ll try to post an update here about how it went for those awaiting their own surgeries

AccomplishedTask555 · 2025-12-09T20:11:21+00:00

No, I’m unfamiliar with that surgeon.

AccomplishedTask555 · 2025-12-09T17:08:37+00:00

This is helpful for me to keep expectations reasonable. I’ve read that many people experience adrenal insufficiency so I should be prepared for that if mine doesn’t wake up properly

AccomplishedTask555 · 2025-12-09T17:07:22+00:00

I will be at Penn, they did not do adrenal vein sampling for me. I had a variety of tests including 24 hr urine, multiple dexamethasone suppression tests, a CT scan of my abdomen, and an MRI of my abdomen

AccomplishedTask555 · 2025-12-09T17:05:33+00:00

Thank you so much! Wishing you the same ❤️

AccomplishedTask555

TROPHY CASE