I am not a physician. I am not qualified to make any recommendations to patients regarding their medications or medication dosage. You should never change your medication dosage without your doctor’s approval and supervision.
Part of my role as a Registered Dietitian Nutritionist is be knowledgable about which medications have nutrition-related side effects. If I suspect that a medication may be causing weight or appetite changes in a patient, then it is my job to bring my suspicions to the prescribing doctor’s attention. That is where my job ends.
Only your physician can decide if making changes to your medication or dosage is safe and appropriate.
Secondary adrenal insufficiency is a serious condition with life-threatening consequences. Never change your steroid replacement dose or stop taking your cortisol replacement without your doctor’s permission and supervision. Doing so can lead to death.
What is Secondary Adrenal Insufficiency?
Secondary Adrenal Insufficiency is a condition that results when the pituitary gland is not working properly. This can happen when a brain tumor, traumatic brain injury or other disease damages the pituitary gland. When the pituitary gland is isn’t working properly, Adrenocorticotropic hormone (ACTH) deficiency often develops.
The job of ACTH is to instruct the adrenal glands to release a hormone called cortisol, also known as the “stress hormone.” A healthy body releases small amounts of cortisol though out the day. It also releases larger amounts of cortisol during illness, injury and/or stress. If the pituitary gland is unable to make ACTH, then the adrenals will not release cortisol. Lack of cortisol can be life-threatening during illness or injury.
Side Effects of Cortisol Replacement
Cortisol is required to sustain life, especially during illness, injury and stress. Therefore, it is very important to replace cortisol if you body isn’t making it. The medication used to replace cortisol is a class of drugs called corticosteroids.
Corticosteroids are an important medication that can literally save your life. But they also have side effects. The nutritional side-effects of over replacement with steroids include (1):
- weight gain
- increased appetite
- high blood sugar
- increased insulin production
- insulin resistance
- high blood pressure
- increased fat-mass in the stomach and internal organs
- metabolic syndrome
- diabetes mellitus
- high triglycerides (fats in the blood)
- increased risk for heart disease
Symptoms of too little corticosteroid replacement:
- increased risk of death from adrenal crisis
- increased risk of death from heart disease, cancer and infection.
- cerebrovascular disease
Finding the “Sweet Spot” for Cortisol Replacement is Critical
Most patients with secondary adrenal insufficiency take a corticosteroid called hydrocortisone for cortisol replacement. Determining hydrocortisone dose is done using an equation based on body surface area. The goal is to give the lowest dose of hydrocortisone possible to control symptoms of adrenal insufficiency (2). Too much hydrocortisone and you will gain weight and feel more hungry. Too little and you feel tired all the time and can even die.
Over treating for cortisol replacement is common (3). It is impossible to replicate the way that the body produces cortisol with corticosteroids taken by mouth. Doctors must rely on their clinical judgement and signs of under or over treatment to determine if the dose is too high, too low, or just right. There are no reliable tests for this.
Doctors usually give a little extra hydrocortisone because they take into account that not all of it will be absorbed from your gut into your bloodstream. Also because some of it will be removed from your bloodstream (by your liver) before it has a chance to work.
Absorption and Clearance of Hydrocortisone Varies
100 percent of any medication that you swallow does not make it to your bloodstream. Some portion of it may pass out of your body with your stool. The amount of medication absorbed varies from person to person. Some people will absorb less of the drug than others.
There is also variation in how different people’s bodies dispose of hydrocortisone. That means that the drug stays in some people’s bodies longer than in others. The problem is that there is no widely available test for cortisol clearance, so it’s hard to assess who may need a lower dose due to decreased clearance of the drug.
What If I Am Making ACTH?
There is also the possibility that even when the pituitary is not functioning correctly, that it is still making some ACTH. There IS a test for this, which I will discuss below. If you are making some ACTH, then it is possible that you are making sufficient cortisol that you only need to take hydrocortisone in the morning (1). Some patients may even make small amounts of cortisol, and therefore only require hydrocortisone when they are sick or injured.
Which is Causing My Weight Gain? Hypothalamic Obesity or My Hydrocortisone Dose?
Most doctors will say that the low doses of hydrocortisone given for cortisol replacement do not cause weight gain or increase in appetite. That has not been my experience. Even a small decrease in my son’s hydrocortisone dose (once I found out that he was making some ACTH and under the doctor’s supervision) made a big difference in decreasing his hunger and food seeking.
If you notice that you or your child is more hungry and gaining weight after starting cortisol replacement steroids, there may be something to your concerns. If the patient develops high blood sugar, high triglycerides, difficulty sleeping, develops a “moon face,” double chin, thin skin, decreased bone mineral density or bone fractures, then the corticosteroid dose may be too high. While that does not mean that it is appropriate or safe for you to decrease or stop corticosteroids, it does mean that you need to have a conversation with your doctor about your concerns.
Be aware that increase in appetite and weight gain are symptoms of both hypothalamic obesity, over treatment with corticosteroids, and “high dose” steroids. (“High dose steroids” are often given after brain surgery.) It can be difficult to pinpoint the exact cause. In my son’s case, it was a combination. He definitely has HO, but his replacement steroid dose was also causing weight gain and increase in appetite.
What Questions Should I Ask My Endocrinologist?
- “Has anyone checked an 8:00 am cortisol level?“If the answer is “no” then request this blood test. If the answer is “yes,” ask what your cortisol level was. A cortisol level < 3mcg/dL is indicative of adrenal insufficiency and the patient will likely need to take hydrocortisone. If it was not low, then you may not need to take any steroids, or you may need steroids but only when ill or injured. This is great news! Keep in mind that if you have had surgery or radiation for a pituitary tumor, that you may one day need cortisol replacement. Also, you should wait at least 4-6 weeks or more after surgery to do any cortisol testing.
- If the patient’s cortisol level is low or undetectable, then you should ask: “Has anyone checked the patient’s ACTH level to see if their pituitary is making ACTH?” If the answer is no, then request the test. Again, wait at least 4-6 weeks after surgery or radiation to do this test. If the answer is “yes” then ask if your ACTH was within normal limits? If the answer to that is “yes” then this is good news! You may need to take steroids on a daily basis, but you may be able to get by with a smaller dose, or may only need a morning dose, which means less side effects on your weight, appetite and health (1).
Other Tests for Adrenal Insufficiency
There is also an ACTH stimulation test, which is the most common test to evaluate adrenal function. The doctor can check your morning cortisol and ACTH levels. Then they give you ACTH through an IV and measure your cortisol levels at various intervals to see if your adrenals are capable of making cortisol. This test is used to diagnose primary adrenal insufficiency, but may not be sensitive in identifying patients with mild AI or recent onset secondary AI (2).
A morning low dose ACTH stimulation test can be done for suspected secondary AI. Be aware that this test can have some technical difficulties. Some of the ACTH can stick to the tubing of the IV and sometimes dilution errors can occur (2).
Since even small replacement doses (and multiple stress doses) of hydrocortisone can increase appetite and weight, it is important that physicians not assume (after treatment of a pituitary or hypothalamic tumor) that the patient has secondary adrenal insufficiency. Testing should be done 4-6 weeks post surgery (or later) to make a formal diagnosis.
Patients with pituitary and hypothalamic tumors often struggle with hypothalamic obesity. Sparing these patients a lifetime of steroids, even if there is only a small a chance that they don’t need them, can make a big difference in the quality of their patient’s (and their family’s) lives. If the diagnosis of secondary adrenal insufficiency is made, then finding the lowest dose (of corticosteroid) that controls symptoms of adrenal insufficiency (2) is a goal that should be taken very seriously in light of the immense struggle these patients already face in controlling their weight gain and appetite from hypothalamic obesity.
- Graziadio, C, Hasenmajer, V, Venneri, MA, Gianfrilli, D, Isidori, AM, Sbardella, E. Glycometabolic Alterations in Secondary Adrenal Insufficiency: Does Replacement Therapy Play A Role? Frontiers in Endocrinology. (2018) 434: 1-7. doi:10.3389/fendo.2018.00434.
- Bowden, SA, Henry, R. Pediatric Adrenal Insufficiency: Diagnosis, Management, and New Therapies. International Journal of Pediatrics. (2018) 1739831: 1-8. doi.org/10.1155/2018/1739831.
- Pazderska, A, Pearce, Simon HS. Adrenal insufficiency-recognition and management. Clinical Medicine. (2017) 17(3): 258-62.