The blood tests that help me monitor my Cushing’s disease

What my lab work looks like while undergoing Cushing's treatment

Written by Noura Costany |

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One of the most common questions I’m asked is what my lab work looks like while undergoing treatment for Cushing’s disease. I have blood drawn every three months at my local Labcorp at 8 a.m., after 12 hours of fasting. I had lab work done earlier this month, so I thought I’d share everything my doctor tests for.

Please note that I’m currently taking the following medications, which can affect my blood test results:

  • Progesterone: helps regulate my period and lower my testosterone level
  • Ketoconazole: reduces my cortisol level
  • Tirzepatide: regulates my insulin level
  • Synthroid (levothyroxine sodium): replaces my thyroxine (T4) hormone, normally produced by the thyroid
  • Spironolactone: lowers my blood pressure and helps me manage certain Cushing’s symptoms
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My current Cushing’s disease treatment plan is working well for me

Liver panel

My doctor orders specific tests to check my liver function, as some of the medications I’m taking can affect the organ. I do take supplements to help my liver, since I’ve had issues in the past, but they’ve been relatively easy to manage.

My protein, albumin, and bilirubin results are usually in the normal range. The rest of my liver panel, however, usually isn’t as great. My alkaline phosphatase level is almost always high, and my alanine transaminase and aspartate transaminase levels are sometimes elevated. High levels of all three enzymes are common in Cushing’s and may point to liver injury or damage.

Hormone testing

My testosterone level is measured through four different tests: total testosterone, bioavailable testosterone, free testosterone percentage, and sex hormone binding globulin. At least one test, if not all four, is always high for me, despite my taking progesterone. My bioavailable testosterone level hasn’t been normal in years.

Cushing’s disease can also cause thyroid issues, so my doctor checks my thyroid function, too, ordering T3, reverse T3, TSH, and T4 tests. The results have varied for me. During my last round of lab work, my TSH level was low. I take Synthroid to help with my thyroid issues.

Before I started Cushing’s treatment — and for about a year after — my ferritin (iron) and vitamin D levels were both incredibly low. They’re more normal now, but we continue to test them to make sure they stay in a good range.

I also have insulin resistance, so my doctor orders an insulin-like growth factor 1 test and a hemoglobin A1C test. My results used to be high, and I was prediabetic. However, thanks to treatment with tirzepatide, they’ve been normal for a while now.

Cushing’s disease tests

Lastly, there are the more typical Cushing’s disease tests: ACTH (adrenocorticotropic hormone) and cortisol. My cortisol is usually between 10 and 20 micrograms per deciliter, which is about normal, but that’s only because I take four pills a day to reduce it. My last ACTH test measured 130 picograms per milliliter (pg/mL). A normal ACTH level in the morning is between 7.2 and 63.3 pg/mL.

This is expected for me, as my pituitary tumor is producing excess ACTH. The high level is an obvious sign of my illness, and tracking it helps my doctor understand how much of the hormone my tumor is producing.

My results are helpful for monitoring my disease and the effectiveness of my treatment. I always review trends in my blood tests and raise any concerns with my doctor.

What other labs help you monitor Cushing’s disease? Let me know in the comments. You can also follow my journey on TikTok and YouTube.


Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.

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