Less Fat, Still Weak after Cushing's

Good news. 

Fat decreases after wild, errant cortisol overproduction from Cushing's is stopped. Just like we Cushies told everyone it would. See, it's not just from over-eating and not exercising.

Bad news.  

Muscle weakness persists. Cardiovascular risk associated with unfair fat symptom may remain.  So do cognitive issues. 

Shoot. This disease just won't let up.

*  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  

Body composition and cardiovascular risk markers after remission of Cushing's disease: a prospective study using whole-body MRI

J Clin Endocrinol Metab. 2012 May;97(5):1702-11. Epub 2012 Mar 14.

http://www.ncbi.nlm.nih.gov/pubmed/22419708

Geer EB, Shen W, Strohmayer E, Post KD, Freda PU.

Source

Department of Medicine, Division of Endocrinology, Mount Sinai School of Medicine, One Gustave Levy Place, Box 1055, New York, New York 10029, USA. eliza.geer@mssm.edu

Abstract

CONTEXT:

Cushing's Disease (CD) alters fat distribution, muscle mass, adipokine profile, and cardiovascular risk factors. It is not known whether remission entirely reverses these changes.

OBJECTIVES:

Our objective was to determine whether the adverse body composition and cardiovascular risk profile in CD change after remission.

DESIGN, SETTING, AND PATIENTS:

Fourteen CD patients were studied prospectively: before surgery (active disease) and again postoperatively 6 months after discontinuing oral glucocorticoids (remission). Whole-body magnetic resonance imaging was used to examine lean and fat tissue distributions.

OUTCOME MEASURES:

Body composition (skeletal muscle and fat in the visceral, bone marrow, sc, and inter-muscular compartments) and cardiovascular risk factors (serum insulin, glucose, leptin, high-molecular-weight adiponectin, C-reactive protein, and lipid profile) were measured in active CD and remission (mean 20 months after surgery).

RESULTS:

Remission decreased visceral, pelvic bone marrow, sc (including trunk and limb sc), and total fat; waist circumference; and weight (P < 0.05). Remission altered fat distribution, resulting in decreased visceral/total fat (P = 0.04) and visceral fat/skeletal muscle ratios (P = 0.006). Remission decreased the absolute muscle mass (P = 0.015). Cardiovascular risk factors changed: insulin resistance, leptin, and total cholesterol decreased (P < 0.05), but adiponectin, C-reactive protein, and other lipid measures did not change.

CONCLUSIONS:

CD remission reduced nearly all fat depots and reverted fat to a distribution more consistent with favorable cardiovascular risk but decreased skeletal muscle. Remission improved some but not all cardiovascular risk markers. Remission from CD dramatically improves body composition abnormalities but may still be associated with persistent cardiovascular risk.

*  *  *  *  

Thanks to MaryO for the post.

CUSHING’S: Relentless and Nefarious

I am 27 days post op for my second pituitary surgery. I had blood work done on post op day 16 after withholding for 24 hours, aka skipping my afternoon dose of hydrocortisone the day before.  Late last Friday, I received some terrible news from my lab results.  My body is making too much cortisol and ACTH so soon after pituitary surgery.

04/24/2011 post op day 5 @ 8 am (withheld pm dose on previous day)
cortisol 13.6 (4-22)
acth 24 (5-27)
glucose 96 (65-99)
sodium 142 (135-146)

05/06/2011 post op day 16 @ 8 am (withheld pm dose on previous day)
cortisol 17.1 (4-22)
acth 59 (5-27)
glucose 102 (65-99)
sodium 142 (135-146)

       My cortisol increased to 17.1 in the am, and ACTH is more than twice normal. I did capture some high ACTH values prior to my first pituitary surgery, with one high ACTH during the day, and that was 125 baseline for IPSS. Some daytime values were in the high 20s but not like this. My 4 am ACTH in 2007 were 78 and 105.

 ** ** ** ** ** ** ** **

       My friend Debra reminded me that a cure for Cyclical Cushing’s is very uncertain, often as low as 30% for the first pituitary surgery. She reviewed the medical literature and read every single study she could find on remission after pituitary surgery for Cushing’s. The highest cortisol value she could find that indicated remission was 14 (post op day 5 cortisol level while withholding HC dose for 24 hours). Mine are 13.6 and 17.1.  Debra pointed to this European Journal of Endocrinology article entitled The Prevalence and Characteristic Features of Cyclicity and Variability in Cushing's Disease, which was published in 2009.
       The second pituitary surgery did not cure my Cushing's.  There is no other conclusion. I am just heartbroken and devastated about this medical development, even though I have known it was a possibility since 2007.
Cushing’s patients whose bodies will not stop producing cortisol must remove both adrenal glands in order to ultimately stop all cortisol production at the source. Since high cortisol breaks down many body systems, it just not an option to let Cushing’s keep going.  So, we trade Cushing’s and high cortisol for Addison’s and low cortisol. REPEAT: I will trade the terribly relentless and rollercoaster cortisol levels of Cyclical Cushing's disease for the unpredictable make-no-cortisol-at-all and hope-there-is-no-emergency-or-trauma Addison's.  I am now making plans to have both adrenal glands removed in a procedure called a bilateral adrenalectomy (BLA). NYU’s Department of Surgery posted information on the adrenalectomy procedure.
       Last month, I posted a list of Cushie Warriors – 50 people from around the world who have had to have multiple surgeries in an attempt to rid themselves of Cushing’s. I wish we could get a restraining order for this Cushing’s menace.
       My current dose of hydrocortisone is 15 mg at 8 am and 5 mg at 1 pm.  I will taper that dose responsibly but quickly after speaking to my Cushing’s endocrinologist this Wednesday. 
       That’s all I have to say about that.
        
        Melissa

Recovery: Post Op Day 14

Hi everyone.  I felt pretty good up until yesterday.  Luckily, I had a follow up appointment with my endocrinologist who diagnosed me with Cushing's. He's a Cushing's specialist. I always feel so relieved after speaking with him.


I thought I would share my questions and his responses. It may help others figure things out post op. ~m
*************

Complications from surgery -- diabetes insipidus. Sodium levels in the hospital were 150, so they gave me DDVAP. Sodium levels dropped to 145 before I was discharged from hospital (post op day 3).

Improvements after surgery
Buffalo hump feels less rigid, skin not pulled so tight.
Belly fat is loose and jiggly. Stomach feels deflated.  Before surgery, belly tight as a drum from excess cortisol. Doc says this is a good sign.

Lab work -- 13.6 cortisol, 24 ACTH  (post op day 5 after withholding hydrocortisone dose in day 4 pm)

Concerned that I’m feeling bad now. I am 14 days post op pituitary surgery. Felt OK before yesterday. Not cartwheels but not in pain either. Yesterday, I woke up with a mild headache and stiffness in my neck and shoulders. I went to the chiropractor but it didn't offer much relief. I took a 4 hr nap and had 9 hours of sleep, but my symptoms remain. Today, my symptoms are the same, even after a 2 hour nap.

• Mild burning/itching in sinus
• Headache
• Pressure in head, upside down
• Overall body aches
• Stiff neck and shoulders
• Sore back
• Preference for dark rooms, no noise
• No drainage in throat so probably not a cerebrospinal fluid leak (CSF leak) 

Doc said feeling bad was a great sign. He is concerned because I am showing signs of hypoatremia, or low sodium levels.  This is common after pituitary surgery, especially for those of us who experienced diabetes insipidus which leads to hyperatremia, or high blood sodium levels. He said he often sees these symptoms happen right around this time (days 7-14 post op). At 8 am on Friday, I will have blood drawn for an electrolyte panel (includes sodium) with cortisol and ACTH after withholding 1 pm dose on Thursday. He suggests that when I drink fluids, I drink Gatorade only, no water, for the next two days. This will help rebalance my electrolytes.

University of California at San Francisco's Pituitary Center mention this in their post surgical instructions:

Some patients develop disorders of salt and water metabolism following pituitary surgery. Headache, nausea, vomiting, confusion, impaired concentration, and muscle aches might be due to hyponatremia (low blood sodium levels). This disorder typically occurs 7 to 10 days after surgery and is more common in patients who have had surgery for Cushing's disease. If you develop these symptoms, contact us immediately. Excessive urination, thirst, and the need to ingest large quantities of fluids might be related to the onset of diabetes insipidus or diabetes mellitus. These disorders put you at risk for dehydration. These symptoms require urgent evaluation and determination of the underlying cause so that appropriate treatment may be given.

I’m taking 10 mg Ambien sleeping pills at night. I tried a few nights without them and I didn’t sleep.
Doc asked if I had any other Cushing’s symptoms, as perhaps too much hydrocortisone was keeping me up at night. I told him I had no other symptoms, and I had lost 6 pounds. A person doesn’t lose weight with Cushing’s!  So, Doc suggested I move dose my 2 pm dose to 1 pm. This will hopefully allow the cortisol levels to be low enough for me to sleep at night.

Dose schedule – can I reduce my hydrocortisone dose now, 14 days post op or wait a few days until the weekend?  What are the next dose levels?

• Do not drop more than 2.5 mg of cortef at a time.
• Currently on 20 / 5
• Stay at 20 / 5 -- next few days, get through the next 8 am blood draw this Friday
• 17.5 / 5  -- stay at this dose for 10-14 days
• 15 / 5  -- stay at this dose for 10-14 days
• Appointment with Doc before dropping dose any lower

When do I need to have an overall hormone lab panel done? How far post op?  I haven’t done my labwork scheduled for after my appointment in January 2011.
Do this 6 weeks post op, or June 1, 2011.

When do I test?  Do I need to test 17-OHS or 8 am cortisol or 24hr UFC when dropping dose of Cortef?
No

~Moxie Melissa