![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 14 of 14. This is the beginning of the thread.
Posted by Kath on June 28, 2000, at 17:56:53
Hi Jennifer - I'm wondering how you are? Haven't seen postings from you & I'm just back at Psy-Bab after being away on holiday.
Take care. Kath
Posted by Jennifer on June 30, 2000, at 1:04:20
In reply to Jennifer - How are you?, posted by Kath on June 28, 2000, at 17:56:53
Kath...Thanks for asking! I've been so busy going from one doctor to the next, and having one test after another, that I haven't had much time to spend on here. I'm glad I had a chance to skim the messages tonight. I think my brain needs rebooting, so I haven't felt like I could provide any good info for anyone, so I just haven't responded to any posts.
Good news is that they are working on figuring out what is REALLY wrong with me, after all of these years. It does look like it is a high cortisol level. Of course nobody believes you if they think you are psycho. I've been complaining for 4 months about severe rib and back pain, which everyone just writes off. Finally got some xrays that were "negative".. and refused to believe it. One good resource was an ortho doc that I had grown up next door to and babysat his kids. He didn't know me to be psycho back then. I took him the xrays and he says I have probable osteoporosis, a compression fracture of the thoracic spine, and at least one broken rib. What is with all these other people that let you feel like crap all the time, and walk around with broken bones?!!!!
At any rate, I have a bone scan, and a bone density scan at Cedar Sinai Medical Center on Monday. It takes several hours to get there, and my appt is at 8am, but the endocrinologist says she needs the results right away! After all of my complaining! Plus, I get to collect these wonderful 24 hour urine tests every week for 3+ weeks, then lug the jug across town to turn it in. Best part would be that they would say,"Did you know that you had _______, and we're going to take care of it now. When we're done, you'll be 10 years younger, 2 inches shorter, thinner, happier, and without depression or panic attacks" Well, one could only dream!
Everything else is well. My girls both attend Girl Scout Camp 7/4-8, so I will have a few days to myself...I can get some things done (hubby will be at work). We may go to the mountains 7/8 if my ribs can take the drive. Have to wait and see. If not, I'm sure I'll get several things taken care of here. Well, sorry this was so long, but it was perfect timing to ask. My best friend (for 34 yrs) had surgery for cervical cancer yesterday, and all my focus, and everyone else's, has been with her. I haven't been able to share much of what's going on with me, since others have things much more acute to deal with.
I'm off to play tooth fairy to my 7 year old, and then to bed at a decent time for once. Talk with you soon. I'll keep skimming the messages...let me know how you are, Jennifer> Hi Jennifer - I'm wondering how you are? Haven't seen postings from you & I'm just back at Psy-Bab after being away on holiday.
>
> Take care. Kath
Posted by Kath on July 1, 2000, at 11:05:16
In reply to Re: Jennifer - How RU?(long) » Kath, posted by Jennifer on June 30, 2000, at 1:04:20
Hi Jennifer, Thx for the long answer to my post. I'll write you at length next week. My husband & I are off hiking & bed & breakfast for the weekend. Take good care! I'm glad you finally found someone who could read X-rays!! Talk to you soon. Love, Kath.
> Kath...Thanks for asking! I've been so busy going from one doctor to the next, and having one test after another, that I haven't had much time to spend on here. I'm glad I had a chance to skim the messages tonight. I think my brain needs rebooting, so I haven't felt like I could provide any good info for anyone, so I just haven't responded to any posts.
> Good news is that they are working on figuring out what is REALLY wrong with me, after all of these years. It does look like it is a high cortisol level. Of course nobody believes you if they think you are psycho. I've been complaining for 4 months about severe rib and back pain, which everyone just writes off. Finally got some xrays that were "negative".. and refused to believe it. One good resource was an ortho doc that I had grown up next door to and babysat his kids. He didn't know me to be psycho back then. I took him the xrays and he says I have probable osteoporosis, a compression fracture of the thoracic spine, and at least one broken rib. What is with all these other people that let you feel like crap all the time, and walk around with broken bones?!!!!
> At any rate, I have a bone scan, and a bone density scan at Cedar Sinai Medical Center on Monday. It takes several hours to get there, and my appt is at 8am, but the endocrinologist says she needs the results right away! After all of my complaining! Plus, I get to collect these wonderful 24 hour urine tests every week for 3+ weeks, then lug the jug across town to turn it in. Best part would be that they would say,"Did you know that you had _______, and we're going to take care of it now. When we're done, you'll be 10 years younger, 2 inches shorter, thinner, happier, and without depression or panic attacks" Well, one could only dream!
> Everything else is well. My girls both attend Girl Scout Camp 7/4-8, so I will have a few days to myself...I can get some things done (hubby will be at work). We may go to the mountains 7/8 if my ribs can take the drive. Have to wait and see. If not, I'm sure I'll get several things taken care of here. Well, sorry this was so long, but it was perfect timing to ask. My best friend (for 34 yrs) had surgery for cervical cancer yesterday, and all my focus, and everyone else's, has been with her. I haven't been able to share much of what's going on with me, since others have things much more acute to deal with.
> I'm off to play tooth fairy to my 7 year old, and then to bed at a decent time for once. Talk with you soon. I'll keep skimming the messages...let me know how you are, Jennifer
>
> > Hi Jennifer - I'm wondering how you are? Haven't seen postings from you & I'm just back at Psy-Bab after being away on holiday.
> >
> > Take care. Kath
Posted by Noa on July 1, 2000, at 12:52:23
In reply to Re: Jennifer - How RU?(long) » Jennifer, posted by Kath on July 1, 2000, at 11:05:16
>Plus, I get to collect these wonderful 24 hour urine tests every week for 3+ weeks
Jennifer, I sympathize. I am doing a 24-hour urine test today and it is not fun. I feel like I cannot venture out from home very far or long (am at the library now) because I have to be near that jug, which is in the fridge (what a sight to open the fridge to!). And I am so clumsy at the collection process. I can't seem to do it without making a royal mess (the boys have it much easier when it comes to this). You have do do this once a week for at least 3 weeks? I am sorry. But hopefully, it will answer the questions.I am doing it to test for Cushing's Disease, which I think involves too much cortisol? Or is it too little? I have to do some research, I am Cushing-illiterate.
The endo has pretty much ruled out congenital adrenal hyperplasia for me, so we are narrowing things down. I also had bloodwork for insulin resistance yesterday.
Posted by SLS on July 1, 2000, at 14:37:53
In reply to Re: Jennifer - endocrine test, posted by Noa on July 1, 2000, at 12:52:23
> I am doing it to test for Cushing's Disease, which I think involves too much cortisol? Or is it too little? I have to do some research, I am Cushing-illiterate.
>
> The endo has pretty much ruled out congenital adrenal hyperplasia for me, so we are narrowing things down. I also had bloodwork for insulin resistance yesterday.
Dear Noa,What is going on with you? (I really wanted to say, "Just what in the hell is going on with you?", but I decided against it).
Gosh, I didn't know you were in the process of screening for so many things. I don't mean to pry, but I was hoping I could be of help. Cushing's causes a secretion of too much cortisol, which as Cam W. keeps reminding us, can really "stress" the nervous system. It is also called hypercortisolism.
A good overview:
http://seattleinsider.adam.com/ency/article/000410.htm
I hope you figure out what needs to be figured out.
- Scott
Posted by Jennifer on July 2, 2000, at 4:55:23
In reply to Re: Jennifer - endocrine test, posted by Noa on July 1, 2000, at 12:52:23
Noa,
Seems like we're going down the same path. I'm going to check out the web site Scott suggested (thanks Scott!). I've had time to research all of this while they were narrowing things down. The insulin resistance came up negative for me, as well as PCOS (polycystic ovarian syndrome), thyroid was negative, etc. These urine tests are for Cushing's...it seems the most likely at this point. The ortho threw in some tests for arthritis and immune diseases, but most of that was ruled out long ago.
Hypercortisol causes many "not fun" things, of which you may have been experiencing. I have had a large weight gain this last year...purple straie (stripes) on my abdomen - not from weight gain...thin ankles and wrists...back, rib, and joint pain, bone fractures, swelling of the feet, thick toenails, vision changes, difficulty sleeping, acne, etc, etc. It seems that all of these are due to the high cortisol.
Now please tell me that the lab gave you a "hat" to urinate in! If they didn't, I know why things are a mess! The "hat" is a small bucket with a rim that goes under the toilet seat...you can pour the urine from the rim, right into the jug. As far as keeping it in the fridge, you don't have to. I keep a little bucket in the bathroom and put ice in the bottom. This lasts 12 hours, so I refill it before bed. The next day I put ice in a plastic bag, put the jug on top, and take it in. I'm getting good at this now, except with the last one the lab didn't pick it up in time, so they had to freeze it, and I won't get the results for another week. I have 2 more to go as far as I know. The endo said I may have to do up to 8! Guess there is such a thing as "cyclic hypercortisolism", which we are checking on also. I'm sure I won't have to do that many if my bone scan or density comes up with funky results. That should be enough to warrant the scan to find the tumor.
So your doc has not explained much of this? Hypercortisol can be caused by 4 things. #1 is stress, depression, anxiety, panic attacks - all raise your cortisol level. #2 is the most common - a pituitary tumor, usually benign, that produces too much ACTH which is the hormone that tells the adrenal glands to make cortisol. #3 is an adrenal tumor that makes too much cortisol, and #4 is a cancerous tumor somewhere else in the body that is secreting ACTH and so the adrenals make cortisol. The most common site of cancers like this is in the lungs. Usually a small oat cell cancer. Diagnosis of Cushing's needs to be made based on lab tests...not on looking for a tumor. 50% of the population has a non-functioning tumor of the adrenal or pituitary gland. Nobody wants to go through surgery to remove a benign, non-secreting tumor! Once the diagnosis has been made via lab tests, and physical symptoms, then you do a scan to locate the lesion. Adrenal and pituitary tumors need to be removed. They remove the pituitary tumor by going through your sinuses in the back of your nose. Some people have sinus problems following surgery. If they don't take off enough, the symptoms may lessen, but remain. If they take off too much, you can go the opposite direction and develop Addison's disease (hypocortisolism). The only time I have ever seen this was in a cat! The best thing you can do is to find the very best surgeon that specializes in pituitary surgeries.
Hope some of this info helps. Keep me posted on your progress. I've felt so crappy, and been so busy with all the medical stuff, that I only check in here every few days. Don't worry if I don't reply right away...I'm just off doing medical tests! Love Jennifer
Posted by noa on July 3, 2000, at 8:28:06
In reply to Re: Jennifer - endocrine test » Noa, posted by Jennifer on July 2, 2000, at 4:55:23
Jennifer, THANK YOU for the info. I will ask the lab for a "hat". It sounds like it makes the process so much easier.
My doc told me he was testing me for Cushings. When I read up on it over the weekend, I was not happy about what I read, ie, about the tumors needing surgery.
I have some but not all of the signs: weight gain, including a lot of weight gained in my abdomen in the past year or two, acne, swelling ankles, thin fingers and feet (but this runs in my family). I do have aches in some joints, like ankles and feet, and sometimes at the hips, but I don't have any fractures. I don't have the purple striae. My sleep is pretty good since being on the CPAP, and since lowering my effexor and raising my serzone.
I am so much hoping I don't have this disease. It is reasonable to think that if I have hypercortisolism, it might be secondary to chronic depression, with my most severe depression in the past year.
I brought in my first jug today. The doc's orders say to test for cortisol and creatinin. So I have to do another jug. I will do it Saturday, I think. It has to be a day that I can be at or near home all day. I could have done it today, since I don't have to work today, but I think it would have driven me crazy to stay home today. I came into work anyway, to check on email, etc. and just get some stuff done while it is quiet.
Posted by noa on July 3, 2000, at 8:38:38
In reply to Re: Jennifer - endocrine test » Noa, posted by SLS on July 1, 2000, at 14:37:53
Scott, THANK YOU.
I did see this article over the weekend, when I was at the library trying to learn more about Cushings from the web.
This is how these tests came about: I went to see an endocrinologist about my hypothyroid. While examining me, he noticed things that he felt were possible indicators of several other endocrinopathies---polycystic ovary disease, congenital adrenal hyperplasia (a genetic disorder common in some ethnic groups), Cushing's disease, and insulin resistance (which is apparently quite common--one article I read says up to 20% of American adults have it).
I haven't been tested for the adrenal hyperplasia, but after reading some old blood test results, from when I was tested for polycystic ovaries, he said it looks unlikely that I have adrenal hyperplasia, or polycystic ovaries, I guess based on my testosterone levels, which I believe would be high in both of those disorders.
I am hoping to be negative for Cushings, as I really really really don't want to deal with surgery.
Insulin resistance seems more likely, since it is more common and I think my father might have it (he had transient type II diabetes for about one year a few years ago) as well as his father, who had type II diabetes in his later years. If so, it could mean having to do a low carbohydrate diet, along with getting my act in gear to do exercise, and it could mean taking medication (glucophage--sp?), about which I know little. The exercise I need to do anyway. The low carbo diet would be extremely challenging for me.
Thanks for the concern.
Posted by SLS on July 3, 2000, at 11:48:51
In reply to Re: Jennifer - endocrine test » SLS, posted by noa on July 3, 2000, at 8:38:38
> Insulin resistance seems more likely, since it is more common and I think my father might have it (he had transient type II diabetes for about one year a few years ago) as well as his father, who had type II diabetes in his later years. If so, it could mean having to do a low carbohydrate diet, along with getting my act in gear to do exercise, and it could mean taking medication (glucophage--sp?), about which I know little. The exercise I need to do anyway. The low carbo diet would be extremely challenging for me.
>
> Thanks for the concern.
Dear Noa,I am not at all read-up on type II diabetes, but I don't think that severely limiting carbohydrate intake is necessary. Limiting fat may be more important. It is more important to focus on "glycemic load" than to simply count carbohydrate calories. Leaning a bit towards protein and away from fat and simple sugars, while eating more frequent small meals, might be plenty enough of a dietary change. Starches are good. Too much protein is no good. Amino acids can be converted quickly into sugars in the blood stream.
I saw an interesting show on PBS in which the speaker indicated that the greater the surface area of a carbohydrate food, the more of a spike is produced in blood sugar levels. He said that "puffy" foods like bread (even whole wheat) and rice-cakes were bad and that "solid" foods like pasta were better. Interestingly, he said that table sugar (sucrose) is not the worst thing in the world since it is not a simple-sugar. I don't know.
Yes, exercise is a big deal. Walk 30 minutes a day. (Don't walk backwards, or you'll undo everything you've accomplished by dieting).
I guess you'll need to exercise your always excellent talents for collecting information.
Just a quickie: http://www.swis.net/westbank/pl-ddiet.htm
- Scott
Posted by noa on July 3, 2000, at 12:22:15
In reply to Re: Jennifer - endocrine test, posted by SLS on July 3, 2000, at 11:48:51
> (Don't walk backwards, or you'll undo everything you've accomplished by dieting).
LOL, SLS!And thanks for the link to the glycemic info.
Posted by Jennifer on July 6, 2000, at 15:47:47
In reply to Re: Jennifer - endocrine test, posted by SLS on July 3, 2000, at 11:48:51
Noa & Scott, I'm going to be real lazy here and respond to both of your posts at once. Besides, I've got to get off to the dentist Yuk!
>If so, it could mean having to do a low carbohydrate diet, along with getting my act in gear to do exercise, and it could mean taking medication (glucophage--sp?), about which I know little. The exercise I need to do anyway. The low carbo diet would be extremely challenging for me.
This is the standard tx for insulin resistance, although it seems the opposite of what would be beneficial. Glucophage helps the insulin work better and get where it needs to go. There are several good low carbo diets out there, but a nutritionist is your best bet with helping with the special needs of insulin resistance.
>I don't think that severely limiting carbohydrate intake is necessary.
In insulin resistance, the chance of cardiac and stroke are much higher. A low carbo diet has been found to be extremely beneficial in reducing the effects of the resistance. It is realized that this is not usually the diet of preference, however, the usual low fat, things in moderation, diet has been found to be detrimental and worsens the condition of those with IR.
>(Don't walk backwards, or you'll undo everything you've accomplished by dieting).I LOL with this one too! I'm thinking of seeing if my treadmill will go in reverse!
Jennifer
Posted by SLS on July 7, 2000, at 7:24:36
In reply to Re: endocrine test Noa Scott » SLS, posted by Jennifer on July 6, 2000, at 15:47:47
Dear Jennifer,
I'm so glad you posted this. I would feel terrible (intolerably guilty) if I were to hurt Noa by urging her to do something so harmful. I guess diabetes type II and insulin-resistance are substantially different regarding treatment.
Thanks for the "catch".
- Scott
> Noa & Scott, I'm going to be real lazy here and respond to both of your posts at once. Besides, I've got to get off to the dentist Yuk!
>
> >If so, it could mean having to do a low carbohydrate diet, along with getting my act in gear to do exercise, and it could mean taking medication (glucophage--sp?), about which I know little. The exercise I need to do anyway. The low carbo diet would be extremely challenging for me.
>
> This is the standard tx for insulin resistance, although it seems the opposite of what would be beneficial. Glucophage helps the insulin work better and get where it needs to go. There are several good low carbo diets out there, but a nutritionist is your best bet with helping with the special needs of insulin resistance.
>
> >I don't think that severely limiting carbohydrate intake is necessary.
>
> In insulin resistance, the chance of cardiac and stroke are much higher. A low carbo diet has been found to be extremely beneficial in reducing the effects of the resistance. It is realized that this is not usually the diet of preference, however, the usual low fat, things in moderation, diet has been found to be detrimental and worsens the condition of those with IR.
>
> >(Don't walk backwards, or you'll undo everything you've accomplished by dieting).
>
> I LOL with this one too! I'm thinking of seeing if my treadmill will go in reverse!
>
> Jennifer
>
Posted by Jennifer on July 7, 2000, at 13:51:59
In reply to Re: endocrine test Noa Scott, posted by SLS on July 7, 2000, at 7:24:36
Dear Scott
You seem like an extremely knowledgeable person that has a real broad base of medical information. Polycystic Ovarian Syndrome (PCOS) is the latest "in" thing to look for in women with depression, weight gain, etc. There actually is quite a high incidence rate. You don't have to have "polycystic ovaries" ...that was just used to first describe it, since they initially found it in women who were infertile or had multiple miscarriages/difficulty conceiving. Now the infertility isn't even a necessity in the diagnosis. The only reason I'm up on it is because they ruled it out on me on this road to possible hypercortisolim. I never even thought it was a possibility since I don't have the polycystic or infertility things. At any rate, there are tons of resources on the net regarding PCOS, and you will see it discussed more and more. You may want to research it since you are one of our "bottles of knowledge" on this site. Can I ask what your background is for all this information you know? I read your posts, and I find them really knowledgeable and I learn a lot! If you don't feel like sharing, I definetly understand! Thanks for the tons of wonderful posts. I look for them to learn something whenever I'm on here. Jennifer
Posted by H.H. on June 1, 2001, at 22:05:43
In reply to Re: Jennifer - endocrine test » Noa, posted by Jennifer on July 2, 2000, at 4:55:23
Jennifer,
I just found this site and am dealing with Cushing's syndrome/disease right now. I was hoping you'd be able to tell me what has happened with your scenario within the last 12 months? I am scheduled for pituitary surgery in about a week and a half. They are going ahead with surgery because they feel confident that all of my diagnostic tests were consistent in pointing to a pituitary tumor as the source. However, my MRI did not reveal said tumor. I was told by my Doctors that in 50% or more cases, the tumor doesn't show up on the MRI. I was wondering if you've had resolution to your Cushing's? Did you have surgery? Anything you can tell me would help a great deal.H.H.
> Noa,
> Seems like we're going down the same path. I'm going to check out the web site Scott suggested (thanks Scott!). I've had time to research all of this while they were narrowing things down. The insulin resistance came up negative for me, as well as PCOS (polycystic ovarian syndrome), thyroid was negative, etc. These urine tests are for Cushing's...it seems the most likely at this point. The ortho threw in some tests for arthritis and immune diseases, but most of that was ruled out long ago.
> Hypercortisol causes many "not fun" things, of which you may have been experiencing. I have had a large weight gain this last year...purple straie (stripes) on my abdomen - not from weight gain...thin ankles and wrists...back, rib, and joint pain, bone fractures, swelling of the feet, thick toenails, vision changes, difficulty sleeping, acne, etc, etc. It seems that all of these are due to the high cortisol.
> Now please tell me that the lab gave you a "hat" to urinate in! If they didn't, I know why things are a mess! The "hat" is a small bucket with a rim that goes under the toilet seat...you can pour the urine from the rim, right into the jug. As far as keeping it in the fridge, you don't have to. I keep a little bucket in the bathroom and put ice in the bottom. This lasts 12 hours, so I refill it before bed. The next day I put ice in a plastic bag, put the jug on top, and take it in. I'm getting good at this now, except with the last one the lab didn't pick it up in time, so they had to freeze it, and I won't get the results for another week. I have 2 more to go as far as I know. The endo said I may have to do up to 8! Guess there is such a thing as "cyclic hypercortisolism", which we are checking on also. I'm sure I won't have to do that many if my bone scan or density comes up with funky results. That should be enough to warrant the scan to find the tumor.
> So your doc has not explained much of this? Hypercortisol can be caused by 4 things. #1 is stress, depression, anxiety, panic attacks - all raise your cortisol level. #2 is the most common - a pituitary tumor, usually benign, that produces too much ACTH which is the hormone that tells the adrenal glands to make cortisol. #3 is an adrenal tumor that makes too much cortisol, and #4 is a cancerous tumor somewhere else in the body that is secreting ACTH and so the adrenals make cortisol. The most common site of cancers like this is in the lungs. Usually a small oat cell cancer. Diagnosis of Cushing's needs to be made based on lab tests...not on looking for a tumor. 50% of the population has a non-functioning tumor of the adrenal or pituitary gland. Nobody wants to go through surgery to remove a benign, non-secreting tumor! Once the diagnosis has been made via lab tests, and physical symptoms, then you do a scan to locate the lesion. Adrenal and pituitary tumors need to be removed. They remove the pituitary tumor by going through your sinuses in the back of your nose. Some people have sinus problems following surgery. If they don't take off enough, the symptoms may lessen, but remain. If they take off too much, you can go the opposite direction and develop Addison's disease (hypocortisolism). The only time I have ever seen this was in a cat! The best thing you can do is to find the very best surgeon that specializes in pituitary surgeries.
> Hope some of this info helps. Keep me posted on your progress. I've felt so crappy, and been so busy with all the medical stuff, that I only check in here every few days. Don't worry if I don't reply right away...I'm just off doing medical tests! Love Jennifer
This is the end of the thread.
Psycho-Babble Medication | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
Copyright 2006-17 Robert Hsiung.
Owned and operated by Dr. Bob LLC and not the University of Chicago.