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Suggest Treatment For Cushing's Syndrome

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Posted on Sun, 15 Oct 2017
Question: I had cushings disease....had 1 adrenal gland removed that was producing 4x too much cortisol..the other adrenal was left. the problem is the other left has now a 4.9cm mass . It produces 2x cortisol. The problem is the adrenal I have is not functioning like its suppose to. Have had numerious defiencies and are being treated with all natural sups. If the mass keeps growing, the docs are wanting to take it out. What is the life expectancy of living w/ no adrenals? Is there a surgery or procedure to remove the mass?How many people have been treated with cushings by having their adrenal gland removed? What is the recovery rate? Life expectancy? Treatment options? How rare is my condition?
doctor
Answered by Dr. Mirjeta Guni (52 minutes later)
Brief Answer:
About Cushing Syndrome;

Detailed Answer:
Hello and thank you for asking!
I have gone carefully through your concern!
Biologically and radiologically it is approved that the remaining adrenal gland is having the same problem as the other one removed.
In 10% of cases the disease may be bilateral (in both glands).
In such great adenomas it is impossible to remove only the tumor and not the entire gland, so if there will be a decision to remove it, it will be adrenalectomy (the remove of the tumor together with the gland).
The surgeon can remove it through a standard operation or in some cases by using minimally invasive surgical techniques, with smaller incisions.

After the operation, you'll need to take cortisol replacement medications (lifelong) to provide your body with the correct amount of cortisol. The recovery period depends on the procedure. If you have an open adrenalectomy, you’ll probably stay in the hospital for four or five days. You can usually go home two to three days after a laparoscopic adrenalectomy. You’ll most likely feel some pain at the incision sites. If you have a laparoscopic adrenalectomy, you might also feel some cramping or bloating caused by the gas in your abdomen.
You may need some follow-up care if you encountered any complications from your surgery. However, most patients recover well and don’t experience complications. Generally, adrenalectomy patients can return to work as soon as they feel ready. However, doctors will tell you to avoid heavy lifting for six to eight weeks after surgery
Life expectancy is not altered if you adjust the replacement dose properly (as indicated by your physician) and follow the medical instruction of corticosteroid use in case of infections or stressful events.

Other treatment option is by using medications that block the corticosteroid production or its action.
Medications can be used to control cortisol production when surgery can not be performed or when it is refused.
Medications to control excessive production of cortisol at the adrenal gland include ketoconazole (Nizoral), mitotane (Lysodren) and metyrapone (Metopirone).

Mifepristone (Korlym) is approved for people with Cushing syndrome who have type 2 diabetes or glucose intolerance.
Mifepristone does not decrease cortisol production, but it blocks the effect of cortisol on your tissues.
It can be considered a rare condition, 5 person per million per year.

Hope i have been helpful.

Kind regards,
Dr.Mirjeta
Above answer was peer-reviewed by : Dr. Vaishalee Punj
doctor
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Follow up: Dr. Mirjeta Guni (50 minutes later)
Thank you for your response it was very helpful. My question though is what is the life expectancy of someone being totally on steroids with no adrenal glands. I thought steroids totally destroy the body. In some cases I have heard that patients can only live between three and five years on being totally dependent on steroids. What is your opinion on that?Dr. Guni, have not heard back from you...it's ok to say "your life expectatacy is not good"....I can take it. I just need someone to confirm. Only want your honest opinion. I'm tierd of drs giving the run around. Please respond.
doctor
Answered by Dr. Mirjeta Guni (17 hours later)
Brief Answer:
About adrenal replacement therapy;

Detailed Answer:
Welcome back,
As i mentioned before, the life expectancy is not changed if the Hydrocortison dose is adjusted properly.
There are studies that reveal 1 or 2 year lower life expectancy but is very important to be in continuous monitoring by a specialist physician.
Hydrocortison that is mostly used to substitute adrenal function, is a corticosteroid with low potency so do not worry about side effects. Of course if taken for long time without physician control, the symptoms of hypercotisolism may appear again.

In our days most of the hormones produced by our endocrine glands are easy to substitute.

Wish you good health.

Best wishes,
Dr.Mirjeta

Above answer was peer-reviewed by : Dr. Kampana
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Answered by
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Dr. Mirjeta Guni

Endocrinologist

Practicing since :2006

Answered : 2411 Questions

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Suggest Treatment For Cushing's Syndrome

Brief Answer: About Cushing Syndrome; Detailed Answer: Hello and thank you for asking! I have gone carefully through your concern! Biologically and radiologically it is approved that the remaining adrenal gland is having the same problem as the other one removed. In 10% of cases the disease may be bilateral (in both glands). In such great adenomas it is impossible to remove only the tumor and not the entire gland, so if there will be a decision to remove it, it will be adrenalectomy (the remove of the tumor together with the gland). The surgeon can remove it through a standard operation or in some cases by using minimally invasive surgical techniques, with smaller incisions. After the operation, you'll need to take cortisol replacement medications (lifelong) to provide your body with the correct amount of cortisol. The recovery period depends on the procedure. If you have an open adrenalectomy, you’ll probably stay in the hospital for four or five days. You can usually go home two to three days after a laparoscopic adrenalectomy. You’ll most likely feel some pain at the incision sites. If you have a laparoscopic adrenalectomy, you might also feel some cramping or bloating caused by the gas in your abdomen. You may need some follow-up care if you encountered any complications from your surgery. However, most patients recover well and don’t experience complications. Generally, adrenalectomy patients can return to work as soon as they feel ready. However, doctors will tell you to avoid heavy lifting for six to eight weeks after surgery Life expectancy is not altered if you adjust the replacement dose properly (as indicated by your physician) and follow the medical instruction of corticosteroid use in case of infections or stressful events. Other treatment option is by using medications that block the corticosteroid production or its action. Medications can be used to control cortisol production when surgery can not be performed or when it is refused. Medications to control excessive production of cortisol at the adrenal gland include ketoconazole (Nizoral), mitotane (Lysodren) and metyrapone (Metopirone). Mifepristone (Korlym) is approved for people with Cushing syndrome who have type 2 diabetes or glucose intolerance. Mifepristone does not decrease cortisol production, but it blocks the effect of cortisol on your tissues. It can be considered a rare condition, 5 person per million per year. Hope i have been helpful. Kind regards, Dr.Mirjeta