Hi doctor,
I am 21 years now. I weigh 60 kg and was diagnosed with cyclical Cushing's syndrome at the age of 20. I had an MRI scan for a pituitary tumor in my brain. But, the clinical findings did not match up. I went to a top end endocrinologist who is a professor in endocrinology. I have beard like hair in my chin, upper lip and neck. I have high pulse rate, a moon face, central obesity with sparing of the limbs, stretch marks on my hips and boobs, anxiety and depression, severe PTSD (posttraumatic stress disorder) from 13 years of extreme abuse, acne, hyperhidrosis, fatigue and weakness, severe headaches and cognitive/attention problems that is so severe, because of which I had to quit my job at a cafe. I also have fatty deposits and irregulars periods. Currently, I am on Venlafaxine 300 mg per day following 4 panic attacks and depression. Clonazepam up to 4 mg for panic, Dextroamphetamine, Isotretinoin for extreme acne but nothing has been administered for physical exertion. I get breathless when climbing stairs. I have already been scanned for PCOS, which came as negative. My thyroid function has been erratic, as for the T4 level that I had about 5 years ago was 20. Then, in two years, it dropped to 14. I got it tested two years later after I got sick and it dropped to 7. Now it is hard, because T4 level is back to 20 like what is normal for me. I was not taking my thyroid medication, because at the time I smoked. I have stopped smoking now. I have been chronically ill to the point my muscles are so weak, that whenever I get up I black out, or am shaking uncontrollably. I was a ballet dancer, and I stopped due to the physical demand. Just walking to the letterbox is excruciating my muscles. Though I am young, it makes me feel like a 90 year old. I have done some 24-hour urine samples for cortisol levels, yet they always come back negative. My endocrinologist said that there are chances, but it could take 10 years to find. I cannot wait that long. Are there any pituitaries anywhere else in the body? And if so, and everything comes back fine, how will I get treatment for cyclical Cushing's? Are the pee tests fine? Is there a medication for this illness? It is ruining my life and the ability to act. I know cyclical Cushing's is a clinical challenge as it is not widely documented. Please help.
Hi,
Welcome to icliniq.com.
- No, there is no other pituitary in the brain and sometimes urinary test fails to detect hormones.
- In cyclical Cushing's, the cortisol levels fluctuate over time, making the diagnosis even more difficult.
- The source of ectopic hormone production should be searched for, once located, the next attempt will be to surgically remove it. If that is not possible, radiotherapy or drugs to control symptoms are started.
- Cyclical Cushing's syndrome is a pattern of hypercortisolism in which the biochemistry of cortisol production fluctuates rhythmically. This syndrome is often associated with fluctuating symptoms and signs.
- Cyclical Cushing's syndrome is seen mostly in pituitary-dependent Cushing's syndrome.
- However, it has also been described in primary adrenal disease, in carcinoid tumors and in other tumors producing ACTH (adrenocorticotropic hormone) ectopically.
- You can have a review consultation in six months for reassessment; laboratory testing can be performed thereafter if necessary.
For further queries consult an endocrinologist online --> https://www.icliniq.com/ask-a-doctor-online/endocrinologist
Hi doctor,
Thank you for your response. Even though my condition is cyclic, my symptoms present all the time, and do not fluctuate. What are ectopic hormones? In regards to adrenal issues, is it possible to have undetected adrenal tumors which would be causing these symptoms? Do I require an MRI scan to detect it? If it was not detected, and my results keep coming back negative, does it mean that I will never receive treatment despite having consistently severe symptoms? What symptom management involve if there are no test results that match with my clear physical presenting symptoms of Cushing's?
Hello,
Welcome back to icliniq.com.
Thanks for your follow up.
- Since you have symptoms that means there is some hormone production, but it is not detected on laboratory examinations, because levels are fluctuating. That is why it is addressed as cyclical Cushing's rather than Cushing's disease or syndrome where levels are high all the time.
- Ectopic means occurring in an abnormal place. Ectopic hormones are inappropriate hormones which are formed by tissue outside the normal endocrine site of production like ACTH production from thyroid, thymus tumors but that does not mean you have one. It is just an example.
- In case of suspected ectopic ACTH production, specific biochemical testing for carcinoids is required.
- Even though the urine test is sensitive to pick up Cushing's, there are 5-6% chances of it missing the diagnosis. In that case, we do a second test like a Dexamethasone suppression test (test to detect abnormal cortisol levels) or a salivary cortisol test also the tests for cyclical Cushing’s are abnormal at times and normal at other times.
- Usually there is a window of a few weeks or a few months where cortisol is found elevated. A night time salivary cortisol levels is advised.
- Cyclical Cushing's overlap with subclinical Cushing's which is a very rare entity. This is extremely difficult to diagnose and several salivary cortisol samples may be necessary.
- Since your MRI brain was negative for pituitary tumor, it might be possible that you have very small foci of hormone production in adrenals that warrants radiological investigations. In fact all the sites susceptible of releasing ectopic ACTH should be scanned but that is a very tough task.
- The recommended diagnostic approach in cyclical Cushing's is computed tomography (CT) or magnetic resonance imaging (MRI) scan of neck, chest and abdomen. Sometimes PET (positron emission tomography) scan is also required to track ectopic hormone site.
- MRI seems preferable as it may detect bronchial carcinoid tumors overlooked on CT imaging.
- The cyclical Cushing's originates in 54% of cases from a pituitary corticotroph adenoma, in 26% from an ectopic ACTH producing tumor and in about 11% from an adrenal tumor, the remainder being unclassified.
- Treatment of cyclical Cushing's syndrome (CCS) is dependent on its cause and is similar to that of patients with sustained hypercortisolism, if tumors are found they have to be removed surgically.
- To relieve patient from his symptoms, medications are suggested.
- Several drugs can be used for this, including Ketoconazole, Aminoglutethimide, Metyrapone (Metopirone) and Mitotane (Lysodren).
- In case of ectopic ACTH syndrome, treatment with somatostatin analogues may be considered for amelioration of ACTH secretion and glucocorticoid excess.
- So, I will suggest you to be patient and have faith in your endocrinologist because he knows better. With time, things will clear and your doctor is at better position to treat you.
For further information consult an endocrinologist online --> https://www.icliniq.com/ask-a-doctor-online/endocrinologist
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