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Dori Middleman, M.D.
MaryO: Dori Middleman, M.D. is a Psychophamacologist and a Certified Gestalt Psychotherapist in private practice seeing adults, children, and families in the Philadelphia area. She also co-leads workshops and training at the Pennsylvania Gestalt Center and is Founder and Director of the Center for a Healthy World, a volunteer-driven psychotherapy and training cooperative. Dori is a board-certified psychiatrist in private practice seeing children, adults and families.
Naturally, her other significant credential is having had Cushing's Disease herself! She has had both pituitary surgery and gamma knife.
Dr. Middleman was recently interviewed on a Philadelphia-area public radio
talkshow, Voices in the Family, and spoke about Cushing's Disease and how to
make meaning out of illness and adversity. The show is available for listening
online by going to
Dr. Dori Middleman: Mary, I'd like to thank you for organizing tonight and for your extraordinary efforts to help us Cushing's patients.
MaryO: Oh, thanks :)
Dr. Dori Middleman: I'm open to any questions about psychiatric issues, including various treatments: medication, therapy, etc.
DebMV: Dr. Dori, are you currently on medication to control your Cushing's or did the Gamma knife resolve your Cushing's?
Dr. Dori Middleman: I seem to be in remission after a pit surgery which failed and two gamma knives. I am on medications for my pituitary becoming inactive as a result of the gamma knife.
I just want to say that if I give what sounds like advice, people should still seek help from their own doctors and seek psychiatric help in person if needed.
CushingsMom: This is my first experience with this chat room I have Cushing's and would love to find some 1 to talk to about it.
Dr. Dori Middleman: You've come to the right place, CushingsMom!
MaryO: Dr. Dori, here's the big growth hormone question - do you think that would help with issues such as depression and such? My past endo seems to think it would help with social issues, too.
Dr. Dori Middleman: From what I've learned in the process of starting growth hormone just last week, people often experience an improvement in overall wellbeing. I suspect that means energy level. I haven't heard that it is an antidepressant per se.
MaryO: I think that my endo told me some things that weren't quite right :( Thanks, though.
Dr. Dori Middleman: Endos have experience with Cushing's patients and growth hormone....I'd inquire more from your endo.
MaryO: He's a long past endo now :(
Leslie: Dr. Dori, why does it seem that people i.e., me, can come out of this being, or feeling like someone we don't even know any longer?
Dr. Dori Middleman: Leslie, I think the experience of being so ill and going through all the procedures and treatments is traumatic. It shakes our foundations, and the world and our own beings are never quite the same. Life goes on...in some ways enhanced, in other ways it can be harder to ever feel normal again.
Leslie: It is just so frustrating to have been so self assured and confident, and now, wishy washy. Thanks
Dr. Dori Middleman: There are really three levels of psychiatric issues. How we were before Cushing's, how we are as a consequence of the derangement of cortisol, and how we feel post-traumatic experience of being ill.
MaryO: Dori, do you think our relationships change, too - people who didn't understand what we were going through and all?
Dr. Dori Middleman: Mary, yes relationships change...some improve, some fall by the wayside as some people find they can't deal with our illness and its ongoing symptoms.
DebMV: Is there much research about the effects of Cushing's on the emotions especially when withdrawing from steroids? We've heard various inputs regarding medications for depression including inhibiting the recovery phase. What is your experience?
KDewey: I feel as if I have had Cushing's so long I don't know what my true personality is. I am always so anxious, sleeping for the first time in years.
Dr. Dori Middleman: Deb, steroid withdrawal is really a post-Cushing's phase. Depression and fatigue are common psychiatric symptoms.
DebMV: Does the medication to control depression inhibit recovery? Post surgery, of course.
Dr. Dori Middleman: I think the best treatment for cortisol withdrawal is slowing down the taper to a bearable degree. My impression is that antidepressants should help symptoms of depression at any phase of illness. Some studies suggest that as many as 90% of Cushing's patients have psychiatric issues...usually depression. Is there some particular info. you have on this issue?
DebMV: No. Just another board member's input. Thanks!
Jane: Dr. Dori, when do you know you need to seek psychiatric help?
Dr. Dori Middleman: I think there is a role for psychiatric support for anyone with chronic illness. It's not a requirement, but can help people cope, and psychiatric medications can help with many symptoms which come from medical illnesses like sleep disturbance, depression, fatigue, anxiety, etc.
KDewey: how long before anti depressant start to work?
Dr. Dori Middleman: KDewey, it's a common myth that you have to wait a month for antidepressants to work. Most people experience some gain in 1-2 weeks. If a person hasn't benefited at all in 3 weeks, the dose should be increased or the medication changed, according to latest research.
MaryO: In light of that statistic, why don't more endos recommend some outside help, rather than sending us home with Valium or Xanax? Do you know of any psychiatrists around the country who understand Cushing's?
Dr. Dori Middleman: Mary, unfortunately, many medical professionals aren't knowledgeable about the potential uses of psychiatry, and many psychiatrists aren't very familiar with Cushing's! We need to educate them!
MyBattle: After the surgery, how fast did you re-grow another tumor and why did 2 gamma knifes fail?
MaryO: the million dollar question!
Dr. Dori Middleman: My endo thinks I never achieved remission after pit. surgery. Evidently they didn't get it all and it regrew. The first gamma knife looked effective initially but then I developed Cushing's symptoms again. Now I am 6 months post the second and holding my own so far. Pituitary tumors, while benign, seem to act sort of like cancers....hard to eradicate, and they seem to be able to regrow even if only microscopic areas of tumor are present
MaryO: Dori, how could we educate psychiatrists?
Dr. Dori Middleman: It would be great if each of us offered ourselves as speakers to medical schools and residency programs to educate all doctors about what it's like to have Cushing's. Talk to your doctors about this!
MaryO: great idea!
CushingsMom: what is gamma knife?
Dr. Dori Middleman: CushingsMom, gamma knife is concentrated radiation to the pituitary
I imagine many of you have been on antidepressants. Any questions about them? People often wonder why a doctor prescribes one over another. In fact, antidepressants all measure about equal in rates of response. The differences are in the side effects. Some are more sedating (helpful for people who are very anxious); some are more activating (helpful for fatigue).
CushingsMom: I'm afraid to go on anti depressants I take Valiums and sleeping pills but its not working I have 4 kids and all I do is scream and yell.
Dr. Dori Middleman: Antidepressants can be helpful for irritability and anger, CushingsMom. Talk to your doctors.
SuziQ: Dr. Dori, thank you for honoring us with a special chat. I wondered if you could tell me what it is that makes us connect so readily with each other. Is it the traumatic effects of Cushing's? Other diseases do not seem to generate people with this instant connection.
Dr. Dori Middleman: Hi Sue! Each of you have an answer to that question: what you gain out of this connection. For me, I immediately feel that the severity of my suffering is believed automatically when I talk to another Cushing's patient. You know how many different symptoms one can have and how overwhelming it can be.
I think that there is also a great need on the part of Cushing's patients for information and referrals due to the ignorance of many doctors we see and there is no better source than other patients.
MaryO: Are there any medications like this that can help with crushing fatigue? I sleep alot and the naps are getting longer each day.
Dr. Dori Middleman: There are a number of approaches to treating fatigue. Treating depression can help fatigue. The antidepressant Wellbutrin is particularly good for increasing energy level.
Stimulant medications, like Ritalin, Concerta, Adderall can be extremely helpful with fatigue due to medical illness. If a person has high blood pressure, however, this needs to be in control first and monitored as the stimulants are used. The sleep disorder drug Provigil is very helpful for alertness and doesn't increase blood pressure.
MaryO: You want to write me a prescription? LOL
Dr. Dori Middleman: Mary, I've been trying to get you to good doctors instead!
MaryO: I know, I know :)
Dr. Dori Middleman: There is a great value in having a doctor you can go to with all your symptoms rather than just hoping that one particular medicine or treatment will help. I know you know that, Mary, but I am saying this for the benefit of others too.
Cushie7: Why do some Cushing's patients experience severe psychiatric symptoms, like psychosis, and others none at all is there a biochemical reason?
Dr. Dori Middleman: Cushie7, probably the answer to your questions is that we each have an underlying predisposition to certain symptoms. Some people have more propensity to go into psychosis under stress, especially chemical stress. With high cortisol, people with a bipolar genetic background may become high or manic in mood.
Cathcart: I presented with Psychosis, my cortisol was so high. Is this a common symptom? Psychiatric drugs did not appear to help condition, only the lowering of my cortisol by adrenalectomy. Now I have low mood but unsure wether fatigued, lethargic due to general condition or depression.
Dr. Dori Middleman: Cathcart, psychosis is a known symptom which can result from excess cortisol, whether from a tumor or from someone taking steroids for another medical condition, like a pulmonary problem. Usually traditional anti-psychotics and mood stabilizers will help somewhat, but the real treatment is curing the high-cortisol state, just like you said.
Unfortunately, it often takes months or even years to resolve a cortisol illness like Cushing's, so psychiatric medications can be of great value symptomatically while in the process of diagnosis and treatment.
MyBattle: Do these antidepressants make you gain weight? That's the last thing I need!
Dr. Dori Middleman: MyBattle, the only antidepressant which almost never puts on weight is Wellbutrin. Only a minority of people gain weight with other antidepressants, but certain ones are more likely to cause weight gain, like Remeron, Paxil, and older antidepressants, called the tricyclics, like Elavil.
Of those who gain weight, some can catch it by noticing an increase in their appetites. Others may put on weight gradually over time by a slowing of the metabolism.
Again, though, the majority of patients do not gain weight with many antidepressants, and the benefits of antidepressants can be very significant. In fact, some people, when they feel better, can lose weight better on antidepressants because they are more motivated to control diet and to exercise.
Leslie: Back to antidepressants, can you suggest some that we could ask our doctors about for either categories? I am currently taking Wellbutrin, and I don't think it is doing much in the way of motivating/activating for me, although I do notice a big difference in my depression when I am not on it.
Dr. Dori Middleman: The first strategy with Wellbutrin would be to maximize the dose. A starting dose is usually 150 mg. The maximum allowable dose is 450 mg, and many people find increasing benefit as they go from 150 to 450.
Many people do best with a combination of two antidepressants: Wellbutrin (which is not a serotonin antidepressant) and an SSRI (a serotonin antidepressant, like Prozac, Zoloft, Paxil, Effexor, Celexa, and Lexapro)
Again, the response rates for antidepressants are about equal no matter what antidepressant you try. The main difference is in the side effect profiles, and there isn't all that much difference between SSRIs with their side effects.
SuziQ: If we were to put together a program for talking with medical schools, would you be available to advise us and help us to format this?
Dr. Dori Middleman: I'd be glad to!
SuziQ: Thank you!!
Dr. Dori Middleman: Good for you for thinking big, Sue!
MaryO: That would be fantastic! Thanks, Dr. Dori
DebMV: Since you've had Cushing's, have you recognized Cushing's in your patients and has your practice changed because of your experience with Cushing's? We've recognized Cushing's in strangers, but are uncomfortable with approaching people about the Disease. Any advise?
Dr. Dori Middleman: I haven't picked up any new patients in my practice, although I'm on the lookout. I think I am more compassionate and effective with people with any medical illnesses as a result of my own illness.
I think one approach which is non-threatening is to offer information about yourself if you suspect someone else might have it, "like, I just wanted to mention to you that I have a weight problem and I was found to have Cushing's disease. I had a very red face and a humped back, and my doctors tested my urine for cortisol and found that it was high. It's made a tremendous difference to me that someone figured it out."
MaryO: That sounds like a great idea, Dori, and easy to do.
DCrosley: Do you think that prolonged increased,almost toxic, levels of cortisol permanently damage brain chemical production/transmission?
Dr. Dori Middleman: dc, there is research evidence now that high cortisol actually causes shrinkage of certain parts of the brain. This may account for some of the cognitive effects...memory and concentration problems Cushing's patients have. The good news is that brains can return to normal size with the correction of the cortisol abnormality.
Jane: Dr. Dori, from experience I have found it best not to admit to having any depression as endo's seem to too easily blame all symptoms on "clinical depression" ...is there a difference between situational depression and clinical? what is the difference, if there is a difference? is the treatment different?
Dr. Dori Middleman: Finding an endo who makes the diagnosis of Cushing's disease and doesn't try to explain all our symptoms by some psychosomatic condition is the first and most important step in getting appropriately treated.
Most of us would have situational depression in that we have a situation of severe illness and disability to deal with. Most of us have some chemical depression due to cortisol problems. Clinical depression is commonly used to mean that a person has a lot of symptoms like appetite change, sleep change, energy loss, concentration loss, libido loss in addition to depressed mood.
I wanted to mention at some point tonight that most teaching hospitals (hospitals with medical schools) have psychiatric clinics which see people on a sliding scale where you can often get quite good care from residents in training to be psychiatrists.
Cathcart: I'm not keen on taking drugs for depression. Will counseling help especially if Cushing's has been treated? My memory is very poor.
Dr. Dori Middleman: One advantage to working with a resident is that they are supposed to use your case to learn from, and you then have an opportunity to educate them and have them work for you in learning about your illness from their professors and books
Call the Department of Psychiatry at any medical school and ask for the Psychiatric Resident Clinic.
Cathcart, psychotherapy is a proven effective treatment for depression. Your memory may be poor due to the aftermath of Cushing's as well as possibly due to depression.
MaryO: The teaching hospital/resident sounds like a very good idea - AND we can educate them a little, too.
Des: I am still undiagnosed, was on Zoloft, it seemed to stop working and was causing more Cushing's symptoms, like weight gain and memory loss weaned off because endo had told me my problems were caused by depression not Cushing's, I really need something to help me, but I am reluctant to take anything, in case it interferes with me getting a diagnosis.
Dr. Dori Middleman: Another function which psychotherapy can serve is to include family members in discussion with you about the impact of your illness on your relationships with them. This can help everyone cope better.
It isn't common for Zoloft to cause memory loss. It might be worth trying a different antidepressant, hopefully getting an antidepressant effect, and then insisting that your endo take your other symptoms seriously because they didn't respond to successful antidepressant treatment!
Des: I will do that Dr Dori, Thank you so much.
Dr. Dori Middleman: One of the big questions I had as a patient was whether cortisol-lowering agents could help my own psychiatric symptoms of anxiety, sleep disturbance, and agitation. I wasn't given ketoconazole when I was waiting several months for surgery and was highly symptomatic due to high cortisol. I suspect it would have helped my psychiatric symptoms.
Really, the best treatment for cortisol-related psychiatric symptoms is lowering the cortisol level...but not so fast as to precipitate severe cortisol withdrawal, which can create many symptoms itself.
KDewey: Would you recommend taking (Lexaprol) in the am with the corticoid or in the evening?
Dr. Dori Middleman: Usually, I tell people to try Lexapro first in the morning because for some people antidepressants interfere with sleep if taken right before bedtime (except Paxil and Remeron, which are quite sedating). Some people feel tired right after taking Lexapro, and this group does better taking it at night.
One whole area which I think gets neglected which pertains to us is the traumatic effects of all the medical appointments, crude things said to us by some medical personnel, and uncomfortable, scary procedures.
Shauna: Hi Dori, sorry for being late. What is the single greatest coping mechanism that you've used or seen used by a Cushie?
Dr. Dori Middleman: Greetings Shauna! For me, my devotion to and love for my children drives me to do the extraordinary, whatever it is, for my health. I also find humor very helpful. I try to make fun of my illness, doctors, hospitals, symptoms, etc. whenever I can!
Shauna: I agree...it's a great driving force in my life, also.
Dr. Dori Middleman: The more I have done to me, the more fun I can have!
MaryO: that's a great attitude
Shauna: lol...great attitude - guess that's why I like you so much!
Dr. Dori Middleman: I know, Shauna, I met and remember your two delightful children very well....from the Portland conference, for those not there.
SuziQ: Not really a question. Just a statement. Maybe knowing about the humor more will understand why I attempt this on the web site so often. Sometimes you must laugh.
MaryO: I think we'd all be lost with this, if not for the humor
Dr. Dori Middleman: Some of you may have found your way to my article, "How to Have Fun with a Pituitary Tumor". It's at http://www.cushings-help.com/dr-dori.htm. Some of it is also on my profile on the boards.
DebMV: What coping advise can we give for spouses, children and friends of Cushing's patients. Or is there an article out there that you've written? I've written a letter to adults and one to children, but we could always use more information.
Dr. Dori Middleman: Great question. I haven't written that article (yet)...I think it is important to try to figure out what their particular needs are based on who they are. Is your letter publicly available, Deb?
DebMV: It's on Mary's site and yes, it's available to anybody that needs it. ** children/spouses board.
Dr. Dori Middleman: I think it's helpful to try to keep some normalcy in relationships. Remind ourselves to relate how we used to relate before being ill at least part of the time so people can recognize us through our illness.
Shauna: Dori - you hit that one dead on. I never want to be known as "the sick one" even if it's truthful at times.
Dr. Dori Middleman: It's so easy, given the amount of suffering with Cushing's, to let illness talk overtake all our conversations. Not a good thing!
DebMV: Well, we often mask our symptoms to protect family and friends. Relatives need to know that.
Dr. Dori Middleman: Having a therapist gives us a place where we can focus on all our feelings and suffering and relieves the burden from our spouses and loved ones. It is very important to have a circle of close people to lean on when one is ill.
KDewey: what do you say when people ask how you feel after surgery to avoid talking about illness all the time?
Dr. Dori Middleman: I kept people in touch with me by doing mass emailings to my friends as I was going through various procedures. It actually made a number of my friendships much closer.
I said, "this illness is a long haul. A lot of people suffer for months and years even after having surgery which is supposed to cure it." Then I say, "I'm struggling; some days are better than others" or something like that, depending on how much I want the person to know.
DebMV: Yes, I've tried to express that. Also, with kids it's important to emphasize that the patient is going to die.
Shauna: Deb, NOT going to die?
SuziQ: Going to die? Excuse me for interrupting?
DebMV: yes, lol, thanks Shauna
Dr. Dori Middleman: Deb, let me take advantage of your slip to raise the question of fear of dying. Every once in a while I bring this up in the chatroom, but I don't hear a lot of discussion. I suspect this is an underlying fear for many of us. Cushing's is a potentially life-threatening illness.
DebMV: I think once people get through the surgery, the fear of dying goes away.
Dr. Dori Middleman: Fortunately, when Cushing's is treated, mortality rate returns to what it would have been before the illness for most of us. Deb, I revisit that fear periodically as well as the fear of losing my ability to function in my life as I've known it. I will forever feel somewhat frail and vulnerable having had Cushing's.
Guest22: How do we stay motivated when searching for a diagnosis? I'm often so tired that it's hard to keep pushing the medical personnel.
Dr. Dori Middleman: Guest22, this chatroom and message board will give you all the strength and support you need! Keep in touch with everybody here.
Lawanarisner: I had a tumor removed in 2002 and I think there is a chance I could have low cortisol or high cortisol, there was not a ACTH test done.
Dr. Dori Middleman: What sort of tumor? Pit, adrenal?
Dr. Dori Middleman: From where?
Lawanarisner: The pituitary, it was hemorrhaged
Dr. Dori Middleman: There probably is a chance your cortisol balance is still off. It takes the remaining pituitary tissue considerable time to recover, and then there's the question of whether you have achieved a cure with the surgery.
Lawanarisner: I have talked to a doctor in another state and told him my symptoms, I have had a GH stimulation test done and it was okay.
Dr. Dori Middleman: My ACTH level remained elevated following my surgery, which was one reason my endo suspected that the surgery was unsuccessful
Lawanarisner: I have had two cortisol serum test run since surgery and they were okay
Dr. Dori Middleman: Lawanarisner, I don't know enough about your case to figure this out with you, and probably you need endo advice more than psych right now, but 24 hour urine for cortisol (if you are off steroids at least 48 hrs) will tell you whether you are high or low.
Serum cortisol doesn't tell you much....it can be normal when the overall level is high or low.
Lawanarisner: That is what I was thinking I needed done. 24 hour cortisol test
Jane: Dr. Dori, what else do you think we need to know?, and a big thanks for sharing your time and knowledge with us.
Dr. Dori Middleman: I would urge all of you to recognize your own emotional needs with this illness and seek support and help from my profession and other mental health professionals and to also insist that your other medical doctors take your physical and emotional needs seriously.
There is still a stigma associated with emotional problems....and yet we all have them! Cushing's patients just have extra reason to have more! Nothing to be ashamed about!
Cathcart: Is the mortality raised greatly before treatment? I felt near death and very isolated. I am thankful for a site like this which brings great reassurance.
Dr. Dori Middleman: Cathcart....you may feel like your dying but be nowhere near death! Lots of us have felt that way! Cushing's can cause cardiovascular disease and diabetes which can be devastating for your health, but not everyone develops life-threatening symptoms. Just get a diagnosis and as prompt treatment as you can, and you have an excellent chance for a good long life!
MarieD: Dr. Dori, I'm been operated for pit 3 years ago. My cortisol is still low (5-12) The endo thinks it will never wake up. Now he is testing me for my growth hormone. Could this hormone be responsible for me being very tired as I need at least 12 hours sleep, a have a sore back for one year now and I have osteoporosis and I lost 40 pounds without trying.
Dr. Dori Middleman: People who have had pituitary surgery or radiation are at risk of growth hormone deficiency. Growth hormone is responsible for a lot more than our height. It helps maintain vitality and energy, helps our bodies regulate fat distribution and blood cholesterol and lipids, and helps prevent osteoporosis. It is wise to get tested for this if you have these symptoms post pituitary surgery
MarieD: I am being tested. Waiting anxiously for results. Thanks.
Lawanarisner: Could I go to my general doctor for a 24 hour cortisol urine test?
Dr. Dori Middleman: Certainly, and you should!
KDewey: Dr. Dori Do you see a difference in adrenal patients vs. pituitary?
Dr. Dori Middleman: KD, I don't have enough experience treating adrenal and pituitary patients to comment. My practice is a general psychiatric practice. I have treated patients with a variety of medical illnesses.
Liliana: Does anybody have a sense of the post surgery weaning period from replacement cortisol? I am one month post adrenal surgery.
Dr. Dori Middleman: It can take months to wean from replacement cortisol as your hypothalamic-pituitary-adrenal function recovers.
CrowdedHead: Dr. Dori, once the hyper-secretion of the cortisol is stopped via-surgery and/or medication will anti-depressant medications begin to work again. They used to work fine for me, but not anymore.
Dr. Dori Middleman: CrowdedHead, there's a very good chance your body chemistry will respond again as it once did once the cortisol is out of the way. Cortisol is such a strong substance, it can throw off lots of functions.
Liliana: Does hydrocortisone make you nauseous?
Dr. Dori Middleman: Lack of cortisol makes you nauseous.
CrowdedHead: So Dr. Dori you are 2 years post-op? Can you tell that you are feeling much better compared to before your surgery and subsequent gamma-knife treatments?
Dr. Dori Middleman: I am feeling fairly normal (if I can remember what that is!) but still have fatigue, a fat body, broken down tissues in some areas, and a wounded soul from being so ill for so long.
MarieD: Humatrope can help my osteoporosis?
Dr. Dori Middleman: Marie, yes, if it is related to growth hormone deficiency. Humatrope is not the first-line treatment. The bone drugs like Fosamax are still the first line.
MaryO: Dori, do you have any final wisdom and advice for us?
Dr. Dori Middleman: Appreciation is a life-giving activity. I am so grateful to all of you who provide support on these boards...to Mary, Sue, Lynne, and so many others, and to my many personal supporters. Spend time every day appreciating all you have in your life. Appreciation will improve your mental health and your relationships.
DrDori will answer questions in an online Voice Chat, June 12, 2008, 7:30PM eastern. Archives will be available after the chat.
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