Cushing Syndrome – Diagnosis and Treatment
Diagnosis
Doctors need several steps to diagnose Cushing syndrome or Cushing’s disease. If you take glucocorticoid medicines—like certain pills, creams, or inhalers—these can explain high cortisol.
In that case, reviewing all your medicines comes first. If those medicines are the reason, you might not need more tests.
If you haven’t used glucocorticoid medicines, your doctor will check for symptoms linked to Cushing syndrome.
They’ll look for a round, puffy face, extra fat on the upper back and neck, thin skin that bruises easily, and stretch marks. High blood pressure is pretty common, too.
Endocrinologists usually order lab tests next. These tests measure hormone levels, especially cortisol and adrenocorticotropic hormone (ACTH). Here’s a quick look at some common tests:
| Test Name | What It Checks For | How It Works |
|---|---|---|
| 24-hour urine collection | Extra cortisol in urine | You collect urine for a full day |
| Blood tests | Cortisol and ACTH levels in blood | Blood sample taken |
| Late-night saliva test | Cortisol pattern (should be lowest at night) | Saliva collected late in the evening |
| Dexamethasone suppression test | Cortisol response to medication | Medicine given, then cortisol measured |
Imaging Tests
When hormone tests point to Cushing syndrome, doctors often turn to imaging next. CT or MRI scans check the pituitary gland, adrenal glands, or other spots where tumors might hide.
Pituitary tumors that cause Cushing’s disease sometimes show up as small growths near the gland. Occasionally, doctors find a tumor in the adrenal gland.
Specialized Testing
If the first round of tests doesn’t give a clear answer, doctors sometimes use inferior petrosal sinus sampling. This procedure helps pinpoint where the extra ACTH comes from. They thread a thin tube into a vein near the pituitary gland.
Then, they compare blood from these veins to blood from your arm. If ACTH runs higher near the pituitary, a pituitary tumor (pituitary adenoma) is likely the culprit.
If ACTH levels are about the same, another source—maybe an ectopic ACTH-producing tumor elsewhere—could be to blame.
Why Different Tests Are Needed
Cushing syndrome symptoms—weight gain, fatigue, high blood pressure—show up in other illnesses, too. Depression, eating disorders, alcoholism, and polycystic ovary syndrome can look similar. That’s why a simple test often isn’t enough.
Testing at a Glance
- Urine Tests: Reveal if your body makes too much cortisol
- Blood Tests: Measure cortisol and ACTH to help find the source
- Saliva Tests: Show if cortisol drops at night like it should
- Imaging (CT/MRI): Spot tumors in pituitary or adrenal glands
- Sinus Sampling: Pinpoints where ACTH is coming from
Doctors work to confirm what’s causing the high cortisol—whether it’s the pituitary, adrenal glands, or somewhere else. Knowing the source helps them pick the best treatment to lower cortisol and ease symptoms.
Treatment
Gradual Reduction of Steroid Medication
Doctors often suggest reducing steroid use when Cushing syndrome comes from drugs like prednisone or dexamethasone. You have to lower the medicine step by step.
This approach lets your adrenal glands start making cortisol on their own again and lowers the risk of not having enough cortisol. Don’t ever stop or change your dose by yourself.
A slow taper can take weeks or even months. This way, you avoid withdrawal symptoms like extreme tiredness, weakness, or low blood pressure. Blood tests and clinic visits help guide the process and keep you safe.
| Reason for Reduction | Possible Medicine | Monitoring Needed |
|---|---|---|
| Overuse or long-term use | Prednisone, dexamethasone | Regular blood tests |
| Side effects | Corticosteroids | Clinic visits |
| Managing symptoms | Glucocorticoids | Symptom tracking |
Surgical Removal of Tumors and Glands
When a tumor or growth causes Cushing syndrome, surgery is often the go-to treatment. Specialists can remove pituitary tumors through a small opening near the nose using minimally invasive techniques.
Sometimes, they remove tumors from the adrenal glands or other parts of the body that produce ACTH, using either traditional or less-invasive operations.
If doctors can’t find or fully remove the tumor, or if Cushing syndrome sticks around, they might recommend taking out both adrenal glands—a bilateral adrenalectomy.
This stops extra cortisol production right away, but you’ll need medicines for life to replace both cortisol and aldosterone.
After surgery, your body may not make enough natural cortisol. Doctors prescribe medicines like cortisone after the operation. Most people need these replacement medicines for months, until their own cortisol levels bounce back.
Some individuals need to stay on hormone replacement for life. Blood tests and regular checkups track your recovery and help decide when to stop or adjust medications.
Use of Targeted Radiation
Doctors use radiation therapy when surgery can’t fully remove a tumor, especially in the pituitary gland, or if surgery isn’t an option.
The goal is to shrink the tumor or stop it from making hormones, while keeping nearby brain tissue safe. Radiation often brings improvement in weeks or months.
Sometimes, patients develop low hormone levels after radiation, so regular checks are important.
Types of Radiation:
- Fractionated Radiation: Small daily doses over several weeks
- Stereotactic Radiosurgery: One focused session
| Type of Radiation | Frequency | Purpose |
|---|---|---|
| Fractionated therapy | Daily for 4–6 weeks | Gradual tumor control |
| Stereotactic radiosurgery | Usually one session | Rapid, precise tumor targeting |
Possible Side Effects:
- Fatigue
- Headaches
- Reduced hormone production (sometimes needing lifelong supplements)
Doctors plan radiation carefully to protect healthy tissue.
Medicine to Lower Cortisol or Counteract Its Effects
Medicine steps in when surgery or radiation can’t fix the problem, aren’t possible, or must wait. These drugs lower how much cortisol your adrenal glands produce, block how cortisol works, or reduce hormone signals from tumors.
Some people use cortisol receptor blocker, which blocks the effects of cortisol instead of lowering production. This is especially helpful if you have diabetes or high blood sugar from cortisol.
Another option, somatostatin analog is an injection that lowers ACTH from a tumor, which brings cortisol down.
Advantages of Medication:
- Useful before surgery or as an alternative if surgery isn’t possible
- Can be stopped or adjusted if side effects show up
Possible Side Effects:
- Nausea, headaches, muscle pain
- High blood pressure, swelling
- Low potassium
- Rare: nerve or brain issues, or liver problems
If these medicines cause low hormone levels, doctors start hormone replacements to balance things out. You’ll need regular blood tests and checkups to adjust doses and catch any issues early.
Everyday Care and Helpful Habits
Living with Cushing syndrome means making steady, practical changes at home. Progress takes time, so patience and kindness to yourself really matter.
People often notice challenges like weight gain, upper body obesity, thin limbs, high blood pressure, type 2 diabetes, fatigue, and changes in appearance—like a rounder face or stretch marks.
Active Living
Try moving a bit more each day. Start with light activity and slowly add more. Walking, swimming, or stretching are good picks. Avoid exercises that could cause falls or injuries, since muscle weakness and osteoporosis are common.
Eating for Health
Eating well is important. Pick foods rich in calcium and vitamin D to help your bones. A balanced diet can also help with high blood sugar and weight gain. Here’s a simple guide:
| Nutrient | Why It Matters | Examples |
|---|---|---|
| Calcium | Keeps bones strong | Milk, yogurt, leafy greens |
| Vitamin D | Helps your body use calcium | Eggs, salmon, fortified foods |
| Protein | Maintains muscles | Chicken, beans, tofu |
Emotional Wellness
Mood changes and depression sometimes show up. If you’re feeling down, stressed, or just not coping, reaching out to a healthcare provider can be a big help.
Easing Discomfort
To ease aches and muscle pain, try relaxing activities like warm baths, gentle massages, or low-impact exercises such as tai chi. These can make daily life a bit more comfortable.
Finding Help and Support
Connecting with others who get what you’re going through can make things easier. Support groups let you share feelings and swap tips for living with symptoms, like depression. Family and friends can join in, too, so nobody feels alone.
Getting Ready for Your Medical Visit
Steps to Take Before Your Appointment
A little preparation before your appointment can really make your visit more helpful. You might start by seeing your regular doctor, but sometimes they’ll send you to an endocrinologist—a doctor who deals with hormone issues.
It’s worth planning ahead so you get the most out of your time. Here are a few things that can help:
Checklist for Preparation
| Task | Details |
|---|---|
| Know pre-appointment needs | Ask if you need to do anything before you go, like fasting or bringing results from past tests. |
| List your symptoms | Jot down everything you’ve noticed, even small things—headaches, feeling tired, mood changes, or changes in how you look (like weight gain, acne, or new hair). |
| Personal information | Note any big life changes, mood swings, relationship stuff, or problems with your sex life. If you have a recent photo that shows changes, bring it along. |
| Medications and supplements | Write down every medicine, vitamin, or cream you use or have used. Don’t forget doses, dates, and the names of any steroid medicines. |
| Bring support | If you can, bring a friend or family member. They might remember things you forget or help ask questions. |
| Prepare for questions | Make a list of what you want to ask. Appointments can fly by, and it’s easy to forget something. |
Questions for Your Healthcare Provider
You might want to ask about:
- What’s most likely causing your symptoms?
- What tests do you recommend, and what are they like?
- What treatments do you suggest?
- How much can I expect to improve with treatment? Will it change how I feel or look?
- What are the long-term effects of each treatment? Could they affect things like fertility?
- How will you track my progress?
- What’s the best way to handle other health problems at the same time?
Having your questions written down helps you cover everything, especially if you’re seeing a specialist like an endocrinologist.
Tips for a More Effective Visit
- Use your phone or a notebook to keep track of notes, medicines, and questions.
- If something doesn’t make sense, just ask your doctor or endocrinologist to explain it in plain language.
- Keep key dates and details handy, like when your symptoms first started.
Questions Your Doctor Might Have for You
Doctors—whether you see an endocrinologist or just your regular doctor—usually ask a bunch of questions to get a clearer picture of what’s going on.
Honestly, it helps if you’re ready to answer them, even if you’re a bit nervous or not sure about every detail.
Here are some common areas you’ll probably talk about:
Timeline and Nature of Symptoms
- When did your symptoms start?
- Do they stay the same, or are they getting worse?
- Have you noticed anything—like certain activities or foods—that makes things better or worse?
Physical and Emotional Changes
- Have you gained weight suddenly, or in weird places like your belly or back?
- Any new skin issues? More acne? Extra facial or body hair?
- Are you feeling moody, struggling to control your emotions, or just extra irritable?
- How’s your sleep? Are you needing more of it, or do you feel tired all the time?
Hormonal and Reproductive Health
- Have your periods changed, or has your interest in sex dropped?
- Any fertility struggles or missed periods?
Muscle and Healing Concerns
- Do your muscles feel weak, especially when you climb stairs or get up from a chair?
- Are you bruising more easily, or do cuts and infections seem to take forever to heal?
- Any bone pain or have you broken a bone recently?
Medication History
- Have you used steroids or hormone meds? What dose, and for how long?
Table: Example Doctor Questions
| Question Type | Examples |
|---|---|
| Symptom details | “When did your symptoms start?” “Are symptoms constant or do they come and go?” |
| Physical changes | “Have you gained weight? Where?” “Have you noticed more acne or hair?” |
| Emotional health | “Have you felt more down or irritable?” |
| Medication use | “Are you taking glucocorticoids? For how long?” |
| Daily life challenges | “Is it hard to climb stairs?” “Do you bruise easily?” |
If you prepare for these topics, you’ll probably find the appointment goes a lot smoother.
Jotting down a few notes or bringing a list can help your doctor, especially if you’re seeing a specialist like an endocrinologist, really get what’s bothering you.
Try to answer as honestly as you can. If you’re not sure about something, just say so—your doctor honestly prefers that to guessing.
And if you think you’ll forget something, bring a friend or family member along. They can help you remember what was said and maybe even ask a question you didn’t think of.
