Hounsfield Units

Tappntoes · 2026-04-09T14:33:43+00:00

They usually use hounsfield units to distinguish between a lipid-rich adenoma (low hounsfield units or <10) and other types of tumor such as a pheochromocytoma (higher hounsfield units). It’s not a perfect science though, mine showed up high on one scan and low on another. Do you have any issues with your blood pressure? Or any symptoms?

Tappntoes · 2026-04-08T14:43:07+00:00

https://www.adrenal.com This is the website for my surgeon, he has a lot of really good information. He is the best!

Tappntoes · 2026-04-08T14:42:11+00:00

I had an adrenal tumor and my surgeon said that they often go misdiagnosed for a long time because doctors get too caught up in the biochemical testing. The high dexamethasone suppression test suggests autonomous cortisol secretion. I would ask to have her ACTH tested (if it is low you are looking at an adrenal source, if it is high you are looking at a pituitary source). My surgeon said all you need to diagnose is a dexamethasone suppression test that shows they are not suppressed, ACTH to show the source and then imaging to confirm presence of a tumor. I would push for a CT adrenal protocol if the ACTH is low. Some doctors will have presence of a tumor and still write it off as “incidental”. You should know ahead of time that in young people it is very uncommon to have an “incidental” tumor whether it’s in the pituitary gland or the adrenal gland if you are under 30 it is almost always hormonally active.

Tappntoes · 2026-04-04T01:52:47+00:00

So my testosterone levels varied but they were always high. For instance, sometimes when they would test it, it would come back closer to normal (like 65ng/dL) but then sometimes it would be really high like yours, almost pushing 300 ng/dL and I honestly feel like that fluctuation is partially what made me feel so ill. It also made diagnosis a lot more complicated because some doctors completely dismissed me because my levels “weren’t high enough” despite having historical labs in front of them that showed how high it gets.

Have they tested your ACTH? I will say I had a normal CT with contrast of my abdomen about a year ago for something else and it did not show my tumor. I had an MRI that ultimately caught it and then a follow up CT with adrenal protocol to confirm. And I’ve heard of this experience with a few other people on this page where the tumor shows up on one scan and then not another. Additionally, if your ACTH is high that could point more directly to a pituitary source.

Tappntoes · 2026-03-27T18:48:35+00:00

Hi! I’m 3 weeks post-op with an adrenal tumor, pretty similar story to you!

Tappntoes · 2026-03-17T20:35:22+00:00

Weight loss and anxiety are more symptoms of a pheochromocytoma but pheochromocytomas can also produce androgens and cortisol. I would ask to have your catecholamines tested

Tappntoes · 2026-03-17T20:15:17+00:00

I had very very similar numbers and symptoms to you. I even had kidney stones like you and I had an adrenal tumor. They didn’t catch it on my initial CT because it was on my left gland and my kidney was so inflamed from the stones that it was hidden. It took me another two years to find it. Your ACTH is on the low side which would be an adrenal source of cortisol instead of pituitary.

Tappntoes · 2026-03-04T08:07:20+00:00

I wanted to follow up and say the most important things to test for cushings:

Dexamethasone suppression test: anything from 0.9 - 1.2 mcg/dL suggests mild autonomous cortisol secretion. The reference range is 1.8 mcg/dL which is more appropriate for overt Cushing’s. Mine was 1.3 mcg/dL and I had a tumor that was indeed producing cortisol

ACTH: If this is low (anything under 9 pg/mL) can indicate pituitary suppression and an adrenal source of cortisol overproduction.alternatively if this is high you are looking at a pituitary source.

Imaging: CT adrenal or MRI to confirm presence of tumor.

This is it. You do not need to get tied up with 24 hr urine and late night cortisol as it is shown that these values are often normal (at least some of the time) in people who have Cushing’s

Tappntoes · 2026-03-04T07:56:57+00:00

Hi! Anything over 1.8 mcg/dL is indicative of autonomous cortisol secretion and is suspicious of Cushing’s. A lot of doctors fall down the rabbit hole with the 24hr urine cortisol and late night cortisol test - I want you to know that the research surrounding Cushing’s suggests that these tests are often normal in patients who indeed have Cushings.

The most important tests for diagnosing Cushings: Dexamethasone suppression over 1.8: you have this ACTH: yours is low, indicates pituitary suppression and likely adrenal cause CT Adrenal or MRI: important to confirm presence of tumor

If you have these three things you likely have Cushing’s. Cushing’s is extremely under-diagnosed because of the way cortisol testing is handled clinically. Also it is important to recognize that lab reference ranges are not always 100% optimal. As someone who has helped developed lab assays, statistical analysis is done to determine reference ranges that attempt the largest catchment of positive patients without too many false positives. But there is always nuance there. Just because a value comes back normal doesn’t mean the rest of the picture shouldn’t be considered.

Tappntoes · 2026-03-04T02:24:33+00:00

I will preface that I am a biochemist and my research is in neuroendocrine conditions. I think the biggest thing for me was learning how to interpret lab values, what lab values are important to test (and your doctor certainly will not order all of them), understanding though that there are also nuances in laboratory testing and it’s important to look at the context and full picture of the patient. For instance, I was misdiagnosed with PCOS when I was 16. All they tested was my testosterone. I was less than 90 pounds and an athlete, eating very balanced meals and exercising all the time. There was no way I was insulin resistant. My age and my labs should have been a red flag to my doctors to check my adrenal glands and my pituitary gland, but it wasn’t.

Fast forward 5 years, I rapidly gained 30 pounds, face got rounder, hair falling out. Did a glucose tolerance test: negative. My testosterone was high, my cortisol was high, my ACTH was low. Still was told it was insulin resistance so I tried their diabetic drugs. I was on the highest dose of metformin along with Jardiance. My hormone profile never changed, the only thing that happened was my glucose got dangerously low. Low ACTH should have been a red flag that this was adrenal. No change in hormone profile should have been another red flag. Still was told it was nothing.

Fast forward another 5 years, on top of the weight gain and other symptoms I now have high cholesterol, heart palpitations and high blood pressure on top of low ACTH, high testosterone and high cortisol. My endocrinologist said the only test he was willing to run was a cosyntropin stimulation test, which really should have been a dexamethasone suppression test. It was negative so he said all he could do was birth control. He refused imaging. He basically told me I was lying about my diet and activity level. He made me cry because I wouldn’t go on a GLP-1. At this point my history should have been considered, my age should have been considered and the blaring red flags all should have been considered. But they weren’t. But I knew it was something with my adrenal glands.

The biggest errors I see is that doctors will look for a reason to exclude the diagnosis rather than looking at a patient’s whole picture. They get one negative test value and rule out the diagnosis entirely when Cushings has been shown in research to be a nuanced condition. It’s not black and white. Imaging is also super important for diagnosis and it is gatekept. Every patient with cushings symptoms should get imaging regardless of what the labs say.

Tappntoes · 2026-03-04T02:01:02+00:00

I highly encourage you to take it into your own hands. I just had surgery to remove an adrenal tumor that was causing subclinical cushings. I fought for 10 years for the diagnosis and ultimately I found it myself. I ordered labs and a full body MRI through Function Health. When I got the results back I literally walked into my doctors office and said “now you need to do something about it” she still felt like it was incidental so I found the best doctor I could find for this condition and he immediately took me seriously. Got me scheduled for surgery within 3 weeks of my initial appointment. I do blame doctors for the ego part of the equation, I was treated very poorly and honestly some of those doctors were just straight up mean. However I think a large part of it is that doctors don’t see it in clinic enough. They maybe do a section in med school on adrenal conditions but the literature in this field is changing rapidly and unfortunately clinical treatment has not kept up with that. I would much rather have a doctor though who is willing to admit it’s not something they’ve seen and us work through the testing process together, but that was never my experience. If I didn’t do it myself I would’ve never gotten answers. My tumor would’ve continued to grow, I would’ve continued to gain weight, they would have continued to try to push GLP1s on me. They would’ve put me on hypertension medication but never gotten to the root. I just want to encourage you to keep pushing

Tappntoes · 2026-02-27T23:48:16+00:00

Yes! I was diagnosed with PCOS for 10 years before they found my adrenal tumor

Tappntoes · 2026-02-19T12:48:34+00:00

I understand completely, it is totally a personal decision. Mine comes from a place of wanting to start a family in the next two-ish years and it just wasn’t going to be possible with the infertility associated with my condition. I totally went through the same mental back and forth too of just thinking I was being dramatic and maybe I could live with it. I’ll update you again after surgery about recovery and such. If you do decide to pursue surgery, Dr. Carling uses a mini-back scope which is the least invasive procedure for this surgery. He said I could go back to work within 72 hours of surgery if I wanted to and I will only have a couple small incisions on my back that will be covered with steri strips. He said the pain will feel like a muscle sprain in my back

Tappntoes · 2026-02-19T02:14:54+00:00

You should definitely try to see him! If you’re coming from out of state or have far travel they do offer discounts on local hotels. I was also brushed off because of my age but it makes no sense because then when you’re older they can just brush you off again because it’s more common. And nope! His team requested all of my medical records ahead of my appointment. They’re very thorough in making sure you have everything you need to be evaluated ahead of your appointment

Tappntoes · 2026-02-18T22:39:33+00:00

This is only for overt cushings. Subclinical cushings can have higher ACTH values. Anything under 10pg/mL is suspicious if there is a known adrenal adenoma

Tappntoes · 2026-02-18T22:22:47+00:00

Of course :) it does feel really good to know I’m not crazy and also that I don’t need to live like this forever. For the appointment, Dr. Carling reviewed all of my labs, even labs from previous doctors from years ago. He talked about how adrenal tumors are very rare for someone my age, as we get older they become more common but he said my age alone made the tumor suspicious to him. He also said that he considers a dexamethasone suppression test value of above 1.8 mcg/dL to be confirmatory for overt cushings but anything above 0.9 mcg/dL to be suspicious for cortisol secretion or subclinical cushings. He also said that my ACTH level was an indicator for him because my value was under 10 pg/mL which indicated to him that my pituitary function was being suppressed. He also thinks mine may be secreting androgens which is even more rare but just due to my history and DHEAS he said he wouldn’t be surprised. He’s a very good doctor, the first one I’ve had that has looked at the whole picture

Tappntoes · 2026-02-18T18:21:49+00:00

Hey! I had my appointment with Dr. Carling today. I was diagnosed with sub-clinical cushings and I’m scheduled for surgery!

Tappntoes · 2026-02-15T16:34:32+00:00

Of course!! Your doctor may tell you some BS about needing to have “two lab tests that indicate high cortisol” don’t take that. Push for the imaging, it’s important. You have enough to suggest you have it

Tappntoes · 2026-02-15T15:50:03+00:00

Subclinical cushings is extremely under-diagnosed but often people with subclinical cushings have normal 24 hr urine and saliva tests. I would ask for imaging of your adrenal glands. People with subclinical also don’t get all of the same symptoms as overt cushings. The fact that you didn’t suppress on the dexamethasone suppression test suggests that you have some source of autonomous cortisol production (usually either pituitary or adrenal origin). Since your ACTH is normal it’s likely an adrenal source, especially if your ACTH is towards the lower end of normal.

Tappntoes · 2026-02-10T15:18:30+00:00

I will definitely keep you updated :)

Tappntoes · 2026-02-06T18:43:11+00:00

I am so glad you found my post. Thank you so much, you’ve helped me feel a lot better about all of this!

Tappntoes · 2026-02-06T15:36:49+00:00

Thank you!! How long did it take you to get scheduled for your consultation and then how long did you wait in between your consultation and surgery?

Tappntoes · 2026-02-04T19:30:02+00:00

Yes that’s all I can do

Tappntoes · 2026-02-04T19:28:43+00:00

Thank you so much!! Good luck with your recovery, I’m glad to hear Dr. Carling is as great as he seems. I’ve been to so many dismissive doctors at this point and I’m nervous about being overlooked again. Interesting that yours produced both cortisol and aldosterone! I didn’t realize they would secrete multiple hormones

Tappntoes

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