Although I'm posting this as research (which it is), this is also personal for me. I was told by multiple doctors to have bariatric surgery. This included endocrinologists. I even went as far as making an appointment with a bariatric surgeon, going through the pre-surgical "talk" and consult, and asking a lot of questions. I didn't find him cognizant of the endocrine problems that might hinder recovery with bariatric surgery. Frankly, he dismissed my questions and walked out on me.I'm glad I did my research. And now, the medical community is looking at the repercussions of bariatric surgery to control weight without first testing for endocrine-related causes, especially Cushing's Syndrome.
The first article cited below is a plea for screening of obese patients prior to bariatric surgery. Dr. Ludlam is well-known in the Cushing's patient community because of his stringent protocol for diagnosis and treatment of Cushing's. He and the others who authored this article have dealt with Cushing's patients for a very long time.
In this article, the authors cite two cases where bariatric surgery caused the CS to be overlooked, resulting in a poor outcome. "One patient had progression of obesity, multiple vertebral compression fractures, poorly controlled diabetes and HTN during a 10-year period, and the second patient ultimately died." The second patient was 27 years old. His death is a tragedy.
The second patient had a rapid weight-gain at the age of 20. By the age of 24 he had undergone a Roux-en-Y gastric bypass to control the weight. After losing 170 pounds and with a BMI of 20 kg/m2 he still presented with "symptoms suggestive of hypercortisolism. These included
lower extremity edema, facial plethora, facial rounding, a dorsocervical hump, acne, proximal muscle weakness, and neuropsychiatric symptoms." These had been present prior to bariatric surgery, also.
The article goes into much more depth than I am presenting here. It is one which I believe all doctors who treat obese patients should read. The authors suggest who to screen , which can be summarized:
- Anyone with an adrenal incidentaloma
- Anyone presenting with HTN and Type II diabetes
- Patients with a "history of easy bruising, evidence of proximal muscle weakness, the presence of reddish-purple striae 1 cm wide, and facial plethora"
- Patients with rapid weight gain, especially in combination with other symptoms
- Young patients with "old" symptoms (i.e. HTN, osteoporosis, kidney stones, multiple infections)
- Any combination of the above.
The authors also suggest following the guidelines of research previously quoted in this blog.
The second article cited below is a response to the first article. In this article, the authors emphasize the need for screening of obese patients.
This article outlines possible contra-indications of bariatric surgery for obese patients, especially those with possible Cushing's. Those, along with the delay in diagnosis may cause "irreversible sequelae in patients with undiagnosed Cushing syndrome"....a recently published meta-analysis reported a prevalence of hypercortisolism in ≤2–5% when Cushing syndrome is systematically screened for in patients with poorly controlled type 2 diabetes and adrenal incidentalomas [2]. Conversely, the prevalence of Cushing syndrome in those with simple obesity is largely unknown. Moreover, a condition of functional hypercortisolism with subtle alterations of hypothalamic-pituitary-adrenal axis is frequently evidenced in those with simple obesity...
...However, despite the probability that the diagnosis of Cushing syndrome might be overlooked, the possibility arises that Cushing syndrome might be unrecognized among obese patients.
M FLESERIU, W LUDLAM, S TEH, C YEDINAK, C DEVENEY, B SHEPPARD (2009). Cushing's syndrome might be underappreciated in patients seeking bariatric surgery: a plea for screening Surgery for Obesity and Related Diseases, 5 (1), 116-119 DOI: 10.1016/j.soard.2008.09.011
S SAVASTANO, R PIVONELLO, A COLAO (2009). Bariatric surgery for obesity and hidden Cushing syndrome Surgery for Obesity and Related Diseases, 5 (1), 121-122 DOI: 10.1016/j.soard.2008.07.006
Obesity seems to have become the big bad cause of all disease and morbidity. It's the easiest problem to diagnose, 'everybody knows' it's linked to every 'lifestyle' disease under the sun, so they don't look any further, not to mention looking at the scientific literature that shows it's not the problem the marketing says it is.
ReplyDeleteRobin, you continue to amaze me in your writings.
ReplyDeleteThank you both for your comments. Steve, I just share information. I hope somebody is listening and it helps patients down the road.
ReplyDeleteWell of course its not hte answer, there are a lot of complication that could happen, and its downright expensive.....of course I am comparing this, to my dog who is obese (though can still feel her ribs, so technically its not really in the obese category) and has Cushing's diease. She's had it for quite some time, and it went into sleep as I think of it, till recently. And both times we've brought her in (both when she was diagnosed and just lately) the treatment is expensive, and because she is so old (along with her size), there could be complications. She wasn't as big as she is now when she was first diagnosed, but still then we decided not to get her treated, and if needed to put her down. We were told she would live for 6 more months (She was about 3 or 4)...well its been over 6 or more years, she is still kicking, though the Cushing's has come back. We don't know how much time we have left, she still is happy so we will wait. Even our vet told us (who has worked with our breed of dog much more than others) says that if she had a dog with Cushings, she would put her down, because the treatment was so expensive and there wouuld be complications. So we are just waiting till when we have to do the deed of putting her down. It will be a hard loss...its like loosing a family member (Had to put down a cat three years ago because she developed Diabetes and she was to skittish to give her insulin shots twice a day, we put her down three days before my mother's birthday, it was so devestating for her).
ReplyDeleteOh in which case, some who don't know Cushings Syndrome, is known in dogs as Cushings Diease...same thing..which is why I am commenting in my dog's standpoint.
Personally I thought this only happened in dogs, till I read about it here (Actually didn't read the whole blog post, but the word Cushing's made me just jump in and comment). So after i finish this comment I'm going back to offically read the blog, though not sure if I'm going to spam and comment again (commenting more than once, before a person comments after me, I concider it spam)
Anyways I bet it is a good post, so I will read it
Love,
Cada Emerson
as i lay in the hospital suffering from cushing's (the illness that killed my father and cousin and aunt and grandmother)i begged my sister to be tested. her doctor said to her that cushing's only happens in dogs and horses. so she took to the "net"(she is not a real doctor she just plays one on the internet)and found help from robin and crew that SAVED MY LIFE. then when 10 of her piers started blogging about new health insurance that covers bariatric surgery she said to them "wait a minute, get a pituitary work up first" 4 of them have already had their Pituitary surgery. how bout that. bloggers saving lives. over and over again. need i say thanks again robin. and the rest of u that have the strength and perserverence to tell the truth out here. (hope)
ReplyDeleteThanks for the post! I had gastric bypass surgery in Dec. 2006. I went from 345 to 225 in about a year then plateaued. The next thing I knew, I had regained 60 pounds in 3 months with no changes in eating. This should be impossible for a GBP patient. I had been presenting many of the Cushing's symptoms for a few years, but it took this weight gain, elevated bp, severe edema, and a different doctor to diagnose it. I was a lucky one because I've gone from diagnosis to surgery in less than a month. I am scheduled for surgery on July 8 to have a pituitary tumor removed. I wonder if the GBP would have been necessary if the Cushing's had been diagnosed sooner. I also am wondering what effects (if any) there might be after the surgery from being a GBP patient.
ReplyDeleteAngela
That would be just awful to be undiagnosed and go through those surgeries and recover from them only to be worse off than before!
ReplyDeleteI've been overweight most of my life. I still can't imagine what it must feel like to think bariatric surgery is the only option left. I think it's great that people try everything they can to lose weight and finally achieve the health they've always wanted. But I hope anyone considering bariatric surgery in a last attempt to lose weight will first consider a less permanent and more effective plan.
ReplyDeleteI started MediFast not to long ago and I'm astounded at my results. If anyone is considering this drastic surgery I hope you'll give this a try first. I'm 5'10' and soon I'll be reaching my goal of 165 lbs.
The program was originally designed to help people lose weight before surgery to reduce the risk of complications. Now it's used for anyone seeking to lose weight because it's so effective.
Please try this before going under the knife.
Hi, fitNgo. If your option worked for those of us with Cushing's, we would be ecstatic. Frankly, it might keep some of us from gaining more, but the weight gain/obesity is very hard to lose with this disease. I hope you didn't post your comment just to try to sell something. This disease is a very sad, hard disease and we already feel terrible about our bodies. We wish it were so simple.
ReplyDeleteOh. My. Gawd. I can't believe this. How ironic that it was my bariatric surgeon who suggested the possibility of Cushing's ------- but only after 19 months of not being to figure out why my LapBand surgery wasn't working. I had spent hundreds of dollars every month going back and going back and going back to get new adjustments to the Band and to figure out what I was doing wrong. Three times I had the Band adjusted so tight that I couldn't even swallow more than two bites of soup a day for a week .... and STILL was losing only ounces a week!!
ReplyDeleteThere was just no earthly reason to believe it had something to do with my eating. I'm sure the nurses, PAs, and other doctors I saw at the surgeon's office during that time thought I had to be lying about what I was eating.
Finally ... finally ... finally ... the surgeon suggested Cushing's disease. Two days later, initial abnormal lab tests sent me off to an endocrinologist referral.
Holy crap. This should be part of the diagnostic and testing process before weight-loss surgery.
Hi, Query Tales....thank you for your valuable comment.
ReplyDelete"Holy crap. This should be part of the diagnostic and testing process before weight-loss surgery."
I certainly agree!!
On Oct 23, 2009 I had Gastric RouxEnY Bypass surgery because all of my doctors: my general dr/my pain mgt dr/my spinal fusion (2) dr/ my chronic pain therapist ALL told me that Cushings Syndrome was soooo RARE that I just needed to lose this excess weight and ALL of my symptoms would disappear or improve. So, like a good patient, I had the bypass.
ReplyDeleteIt is 10 weeks post-op and I have lost 40 lbs (230 to 190, 5'7" tall, 39 yrs old)-this could be considered slow by some RNY patients. On Nov. 11, 2009 (only 2 weeks post-op) my new doctor, a young, female endocrinologist got my dexamethasome (1mg) results (finally) and loosely diagnosed me with Cushings. I have since had another 1mg test and an 8mg test, these also suggesting Cushings. I am scheduled for a MRI 2 days from today to see if we can see the size/location of the tumor on my pituitary.
For more than 2 years I have self-diagnosed my Cushings. I had EVERY symptom, and MORE, except the straie (SP?)(horrible red stretch marks). So, each time a 24hr urine-free cortisol test came back in the 'normal' range, I began to agree with my Dr's- my worsening symptoms must be due to growing obesity. I decided that I just needed to 'move on' with my life and accept the fact that I ate bad and did not exercise (due to my 4 back surgeries in 4 years, and my severe depression).
Well, if I have my way, my tomb stone will read: I told you I was sick!
I do not know if I will regret the bypass surgery down the road because I am not certain what that 'road' will entail yet.
At my one month gastric check up, upon hearing my news, my Dr was upset that I had never mentioned the word Cushings to him. (Again, I was having the gastric b/c Cushings was too RARE for my overweight self to have, so, it never occurred to me to mention it to him...) He also said "I would have never operated on you if I had thought you had Cushings". Later in our conversation he told me of his concern that once my Cushings was under control, that I would be too skinny because I had gastric.
I hope this comment helps someone out there.
Dear Anonymous, thank you SO MUCH for sharing with us. I hope you will join us on the Cushings Help support/message boards. We care, and would love to support you as you go through this.
ReplyDeleteWe hear the "Cushing's is too rare" speech so often that we expect it anymore. I am so sorry you did not get the support you needed from your doctors.
Please stay in touch.
I'm curious to know how much Bariatric Surgery (Gastrtic Bypass, etc) costs. Is it covered by insurance? Medicaid? What are the steps one should take? What are some after-effects
ReplyDeleteThis comment has been removed by a blog administrator.
ReplyDeleteFascinating read - I had a lap band (gastric banding) put in in 2004 after rapid unexplained weight gain that I just couldn't shift. I also felt much older than my then 28 years, had chronic back pain, weak ankles, round, flushed face to name a few. 6 years later I had the band removed - why? Because I am another 10kgs heavier than when I had it put in! I am now finally seeing an endocrinologist who is to start testing for Cushings - in the meantime I have developed a hump and my weight is now very much carried around my tummy and chest, plus fatigue, stretch marks, easy bruising, poor immune system etc etc. If I end up with a diagnosis of Cushings, which I suspect I will, I will write a calm and polite letter to every one of those doctors over the years who have pretended to listen to my symptoms and then told me to go away and eat less/exercise more. Some of them really need to learn to listen, to really listen, and to address issues they don't know enough about by referring to someone who does.
ReplyDeleteI was searching online for exactly what you are talking about here. It has been awhile since there has been any posts but I do have a question. What if the Cushing's is caused by steroid abuse (years of taking prednisonefor asthma)and a steroid dependant patient. If the patient was finally able to ween off of the prednisone, could the Bariatric Surgery be benifical to this patient in aiding in the weight loss? I hope your still out there to give me some feedback. Thank you, Tammy
ReplyDeleteHi, Aubintt. If you have weaned off the steroid, then you may be able to lose the weight without the bariatric surgery. It may be a bit slower. I've been able to lose over 100 pounds since my bilateral adrenalectomy (BLA). My BLA essentially took away all cortisol, the steroid causing my weight gain. I now take an optimum replacement dose at a much lower level. It's possible that you will lose due to the lack of the steroid.
ReplyDeleteIf you can't lose after weaning, I think bariatric surgery could be an option. You won't have the steroids wreaking havoc with your body. A bariatric surgeon who really understands endocrine function will be able to help you with that. My BLA surgeon is also a bariatric surgeon. He was/is very knowledgeable.
TY for the response!! I am in the process of STILL trying to ween off. I really dont think this will happen. Both Doctors Respirologist and Endocrine Dr. say I need to stay on the low dose and not rock the boat til after the surgery. I will be bringing this thought up to the Bariatric Dr. when I see him at the end of the month and again see what he thinks....They want to see some weight loss in order to send my file along to the Bariatric surgeon...and well that's quite difficult as you know I am on steroids and I was in car accident that had broke one of my screw I have in my back from a surgery I had done way back in 1991, and now all my fusion around that screw is discipating and i am in constant back pain and am now using a walker to move around....and Im only 44!! Again thanks for the input I really appreciate it!! :) Tammy
ReplyDeleteTammy, let me know how you are doing, if you will. I care.
ReplyDeleteHi Everyone ... i m 29 and a Cushings Disease patient. I have been diagnosed with a macroadenoma of the pituitary gland. Almost 2.4 cm. I have been putting on weight ever since 2003 and showing symptoms of fatigue, bone and muscle weakness and hormonal imbalances. But the tumor got diagnosed in 2011. All this while my doctors thought i was suffering from morbid obesity and PCOD. However the challenge i face is the super morbid obesity. i weighed 233 kgs until last month and suffered from immobility, pains, (i also have a avascular necrotic hip). Thats when i decided to get admitted in a hospital on my doctors suggestion for an aggressive weight and medical management program. i have lost 25 kgs .. and i weight approximately 205 kgs as on today. My physician has qualified all my other medical parameters as normal. (Heart, kidney, liver, BP, Sugars etc ) the only hindrance is the weight and immobility.
ReplyDeleteMy question is .. if i opt for the pituitary surgery. How soon will it start reflecting on my weight ? How does one feel post op? Should i undergo the surgery at this weight or should i aim for more weight loss??
I would be glad to share my detailed medical history with anyone who has had a similar experience or can help me take a good decision.
I am 6 months post op and have hardly lost any weight even though I am on an eating plan and exercise program. My Endicrinologist wants me to have bariatric surgery. I experience more pain now than before the op. I have severe muscle and bone pain and often get depressed. Be prepared to feel worse than before.
DeleteHi, Shazy D. I will see if some folks I know who have faced your dilemma wil post here. Thank you so much for sharing!!!!
ReplyDeleteShazy D, I wanted to add that I had pituitary surgery and it helped my weight some immediately. Afterward, though, my Cushing's came back and I had a bilateral adrenalectomy to remove both adrenal glands. Then, I was able to lose a lot of weight. It's not easy at first, but it gets easier as time goes on. Hugs.
ReplyDeleteSo thankful for people who are warning people by writing wonderful articles like this. For me, I had my gastric bypass in 2007 and it was successful for about 2 years and then as quickly the weight came off, the weight quickly starting coming back. And since thr surgery, I can't at that much, I was perplexed why I was gaining weight.... the drs would all say the same...eat less, exercise more. Eat less .... not sure how when consuming even 800 to 1000 calories is a struggle but I have let the convinced me I was doing wrong. As I started to have other health issues like very bad pcos causing me to have to have complete hysterectomy in 2012, then balance problems with being dizzy that caused me to fall down the stairs twice, once I broke my foot and the other had to have 2 discs replaced in my neck.
ReplyDeleteFast forward to now, my parents came across a brochure that they had found about cushings and told me I had been diagnosed with that when I was 12. Because that was 30 years ago, not much was known and so nothing was done. When I was 13, I had a tumor removed from the base of my spine and 18, I had a brain tumor. And since the drs never tested me, I wi never know if these were tumors causing me to have cushings . I am just now on the search to find a dr in Alabama that is knowledgeable and will work with me. And that itself is hard.
You just got a doctor recommendation below! Please join us on Facebook. There are several good Cushing's groups with lots of support.
DeleteI use UAB in Birmingham! I have a great ENDO, Dr Vaughn and neurosurgeon Dr Riley outstanding care for 12 years now!
ReplyDeleteI have a documented pituitary adenoma and have gained so much weight over the past 6 years. Before this I was thin my whole life except during pregnancy. I also have excessive sweating and as a woman need to shave my chin and lip twice a day. This is not just a few stray hairs. I have gone long periods of time without a period. My endo did one serum cortisol test on me at 11 am, which doesn't even have a normal range for it. He then referred me for bariatric surgery. I was devastated.
ReplyDeleteI'm sorry to hear this!! I bet you were. Have you found another endo?
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