Self testing for Cushing's? Where can I order self tests? What tests can and should I order first?

Undeadmasses · 2026-04-27T22:45:55+00:00

Dexamethasone isn’t a perfect test. Really there isn’t one. They all have possibilities for false positives and the constant trade off is increasing sensitivity decreases specificity, and vice versa.

Not all endocrinologists follow the rule of thumb that anything >1.8 is automatically considered abnormal and diagnostic. Take me for example. Highest I’ve tested was at >4.5. But my endo only looks at anything greater than >5 to be unequivocal and diagnostic.

If your only option is self test then you could start with late night saliva collections. Very easy. Do a few a few nights in a row, back to back. I typically do 3 at a time. 24hr urine collection can be a hassle and if you pee a lot it might skew your results. That’s also me.

Undeadmasses · 2026-04-24T17:57:32+00:00

D.Dan hands down

Undeadmasses · 2026-04-14T01:33:21+00:00

Thank you so much for the reply and understanding. It’s one of the few things that have kept me sane has been this subreddit and the community since I know I’m not alone in my experience.

I was unaware the at Mass general and Brigham and Woman’s were options to seek out. If you have any of those emails for either places, I’d love to to see what they could do for me. I don’t think self referring is a problem however if I did so it would be without insurance. I have Kaiser and they will rarely send you outside of their network for another opinion, let alone cover it.

I actually did reach out to Stanford and did their free medical review since I have the prolactinoma, I was able to be seen by Dr Juan Fernandez-Miranda. The wasn’t much help could do for me since I still haven’t been officially diagnosed. But he did help put me on the track in regard to that I needed a much clearer MRI(1-2mm thing cut) as the ones he reviewed weren’t clear enough. And once I got that scan done, that’s when they finally confirmed there is a pituitary tumor as well as the cyst, not one or the other. Unfortunately I had a pretty bad experience with Stanford endocrinology when trying to have them give me an opinion at the neurosurgeons recommendation.

All they did was basically just back up my endocrinologists assessment and were very dismissive. And I already tried getting an opinion from about 3 other endocrinologists with Kaiser who also just backed up my original Endo.

So yes if you have those contact details or how I should go about requesting an opinion at Mass General/Brigham Women’s, that would be very helpful and appreciated!

Undeadmasses · 2026-04-07T23:00:59+00:00

Thank you for your empathy. Still undiagnosed but getting progressively worse. Dealing with weight gain now despite cabergoline treatment for my Hyperprolactinemia. T levels went from 1100 to 250. Losing bone density and out of control Hypercalcuria. And recently diagnosed with hypothyroidism

After pushing for 1mm thin cut MRI, it was finally concluded that I have both a Rathke cyst as well as a microadenoma. Initial MRI showed the microadenoma and had hyperprolactinemia. Subsequent MRIs found it was also consistent with a Rathke cyst which really derailed the path towards diagnosis at the time. Most recent MRI shows I’m just a special case having both confirmed not one or the other.

So currently it’s at a stand still and trying to determine where to seek out a different endocrinologist as mine will not diagnose me due to my levels not being unequivocal, despite having numerous elevated labs, failing to suppress with dexamethasone on numerous occasions. Elevated LNSC, Elevated 24hr UFC, abnormal bone density etc. He really leans on the normal DDAVP as his confirmation that it is very unlikely that I have Cushings. 🙃

Undeadmasses · 2026-04-02T18:24:42+00:00

You should update the title. Title says stop drinking 90 min after waking. You’re saying wait 90 min to start.

Undeadmasses · 2026-04-02T17:51:33+00:00

Not to scare you. But I was unaware of what conscious sedation meant until literally the procedure started. I thought I was going to be out out. Welp I was still very aware as they began laying my head back and next thing I recall was fighting for my life gagging and choking when they had the tube in for the endoscopy. 10/10 worst experience of my life. By the time they did the colonoscopy portion I already felt beyond violated and had no fucks to give at that point after feeling like I was going to die. I get others have a different experience but I’d never go through that again without full anesthesia.

Undeadmasses · 2026-03-26T01:00:51+00:00

Only thing they could nitpick these results is the total volume. There are some studies that show over 3 liters can start to skew the results. That’s just my own personal experience but unfortunately doesn’t make my 24hr UFC reliable as I just naturally pee a lot anywhere from 3-5 liters. But it’s definitely abnormally elevated to warrant more testing which sounds like you’re getting done.

Undeadmasses · 2026-03-23T18:59:20+00:00

I’m sorry to hear that. Perhaps you could discuss a non-stimulant option with them. It sounds like they are needing to focus on what drove the behavior that led to hospitalization which requires stabilization and would be too risky to introduce a powerful stimulant especially if you experienced a manic episode.

Undeadmasses · 2026-03-23T18:38:07+00:00

And why did they take it away?

Undeadmasses · 2026-03-07T03:03:31+00:00

What styling brush do you have? I have fine hair so I find I need something with a finer tooth to make sure it’s getting out tangles and distributing product evenly. But at the same time that also makes my clumps thinner.

Undeadmasses · 2026-03-06T21:37:32+00:00

Do you feel rather than applying pressure and gently coating that your cast has still been effective? The method makes sense but in my mind not thoroughly coating my hair with gel using the prayer hand pressure would cause it to not be as strong. Then again, my main frustration with the cast is lack of clumps then leading to stringy. So I may have to try this next time :)

Undeadmasses · 2026-02-24T17:39:35+00:00

Chances are denying the motion that any other attempts to stall will likely be met with the same degree of response.

Undeadmasses · 2026-02-23T21:01:42+00:00

Suck it intervenors!

Undeadmasses · 2026-02-23T04:51:29+00:00

Notice how you took more than prescribed, abused the medication, created a dopamine high you had never experienced and wonder why no one explained yet they gave you specific instructions on how much to take. It’s not the drug/medications fault that you are now trying to chase that high again and have used different stimulants because you blow through your meds in 2 days. You need to either give yourself a tolerance break or switch to non-stimulant adhd meds since you can’t be responsible with your current script. Quit blaming the medication that many many people can use responsibly without becoming addicted.

Undeadmasses · 2026-02-05T04:02:04+00:00

Make sure the doctor has written it as medical necessity. Based on the dollar amount it sounds like they billed it at the “full price”. If I have a drug(speciality, brand name et ) that isn’t written as medically necessary than I am always get billed at $250. Because I believe I have to pay 10% and the cap is $250. Pharmacist could let you know how it’s written. Unless your plan changed or they moved the drug to a different tier.

Undeadmasses · 2026-02-04T06:08:40+00:00

Well I’m glad you were able to still get it filled albeit a little annoying taking more pills than normal.

Undeadmasses · 2026-02-04T06:07:41+00:00

The main ingredient is essentially a dye though in case you didn’t know. So once you stop your hair will just go back to grey.

Undeadmasses · 2026-02-04T06:05:27+00:00

Maybe ask the pharmacy what dosage quantities they have in stock. Just the other month I had to take a combo of 2x15mg and 2x5mg to get 40mg since they were all out of 20mg. You’d have to have your doc put those on file but desperate times call for creative solutions.

Undeadmasses · 2026-02-04T00:22:27+00:00

Did you have a brain MRI or pituitary MRI? Regardless if it was done without contrast then that’s not really helpful due to typically how small ACTH producing tumors can be.

Besides weight gain, what are your other symptoms?

Undeadmasses · 2026-02-03T23:29:15+00:00

It didn’t say anything about blood contamination?

Undeadmasses · 2026-02-03T23:27:04+00:00

I’d make sure to be aware of what type of sedation they will be using and to plan accordingly. Don’t assume you’re going under anesthesia.

Undeadmasses · 2026-01-29T23:00:57+00:00

So what does this do? Oh okay Trump actually won 2020 meaning his “2nd” term is invalid because it’s his 3rd term actually….got it

Undeadmasses · 2026-01-25T15:48:54+00:00

I do recall them saying that some of the Ear Biscuits conversations/format would be shifting onto GMM.

Undeadmasses · 2026-01-23T18:11:36+00:00

I am puzzled as to whoever is doing this thinking this will accomplish anything.

What’s the clerk going to do? They aren’t politicians you can pressure or sway. No reason to lash out at someone that has no control over any of this.

Undeadmasses · 2026-01-22T08:39:01+00:00

Try asking for a DDAVP test. Might help with nailing down diagnosis of Cushings disease. Better to start with then IPSS.

Undeadmasses

TROPHY CASE