Mastering Home Management for Cushing's disease

Here you will learn all about how to manage Cushing's Disease at home. You will learn about managing medications, monitoring the disease at home, and when to loop your provider in when thing change. 

Medication Management

Medications for Cushing's Disease generally fall into two categories, cortisol lowering drugs and pituitary targeting drugs. Cortisol lowering drugs, such as ketoconazole and mitotane, block cortisol production in the adrenal glands. Pituitary targeting medications, like pasireotide and cabergoline, reduce ACTH, the hormone that stimulates the adrenal glands. What is most important when it comes to medication management for Cushing’s Disease is: 

  • Taking medications consistently, this means at the same time of day, every day.
  • Getting labs checked when your provider orders them. Many of these medications can cause liver issues which is why labs are drawn when taking them.
  • Monitor for signs and symptoms of high or low levels of cortisol. 

If you are prescribed steroids, often glucocorticoids, it is important to not stop them abruptly. Even though these can cause increased cortisol levels they still need to be tapered. Stopping abruptly can cause an adrenal crisis, which is life threatening. 

Monitoring at Home

At home management of Cushing’s disease is important. There are a couple of key things that people with Cushing’s disease should be monitoring. 

Patients should keep a daily log with the following information:

  • Weight- be sure to wear the same thing daily when weighing yourself, and do it first thing in the morning. 
  • Blood glucose- there are many ways to monitor this, from finger sticks to continuous monitors that can connect to your phone. What is most important is that you work with your healthcare team to find something that works for you.
  • Blood pressure- make sure to sit with your feet planted on the floor (not crossed), with your arm relaxed. There are at-home automatic blood pressure cuffs that make this fast and simple.

    Knowledge Checkpoint

    1. What three things should you monitor daily?

     

    2. Why is it important to get labs drawn?

     

    When to call your provider!

    Cushing’s disease manifests in many ways. Keep an eye out for the following symptoms, and notify your provider immediately if you notice them:

    • Severe hyperglycemia
    • Infection
      • Fever
      • Confusion
      • Fatigue
    • Extreme weakness
    • High blood pressure

    More times to call!

    With Cushing’s Disease the goal is get cortisol levels within a normal range. This is generally done with medication. This means that there is a chance for cortisol levels to drop too low. It is important to be aware of signs of low cortisol levels, especially when there are changes to your medication regimen. These are the signs to look out for, and notify your provider if you notice them:

    • Low blood pressure
    • Hypoglycemia
    • Nausea and/or vomiting
    • Dizziness 

    These could be signs of an adrenal crisis, which is a life threatening condition due to a sudden and severe drop in cortisol levels. Adrenal crisis requires immediate intervention, and knowing the symptoms is very important for patients being medicated for Cushing’s disease.

      Knowledge Checkpoint

      1. Why would someone getting treatment for Cushing’s disease have low cortisol?

       

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