Jump to content



Welcome to the Cushing's Help Boards

Welcome to the Cushing's Help Boards. Like most online communities you must register to view or post in our community. Don't worry - this is a simple free process that requires minimal information for you to signup.

Be a part of the Cushing's Help Boards by signing in or creating an account.
  • Start new topics and reply to others
  • Subscribe to topics and forums to get automatic updates
  • Search for past information from more than 10,000 members
  • Get your own profile and make new friends
  • Get a free blog and photo gallery
  • Customize your experience here
  • And much more...
Please join us!
Guest Message by DevFuse
 

Photo

Dr Ted Friedman will return for his Third Live Voice Interview, Sunday, February 13, 2011, 9PM eastern time


  • Please log in to reply
62 replies to this topic

#21 ltw

 

    Chatty Cushie

  • ChattyCushie
  • 883 posts
  • Gender:Female
  • Location:North Florida

  • United States

  • Gender:
 

Posted 08 February 2011 - 03:36 AM

Question on pituitary hyperplasia...We've talked before about what it is, and if I understand correctly it's the "funky" cells filtering throughout the gland. This gives the surgeon no "clear target" as I was once told. If a doctor is leaning toward pituitary hyperplasia during the workup, what is the preferred treatment? It doesn't seem to make sense to go to surgery if the entire gland is affected. Would removing the half the gland give you "less" cushings sympotms? Seems like that is risky, possibly making hormonal imbalances worse? Logically it seems medication or BLA makes more sense? Thoughts?

thanks.
LisaMarie

#22 gumdrop

 

    Over 2000 Posts

  • Over 2000 Posts
  • 2,338 posts
  • Gender:Not Telling

  • United States

  • Gender:
 

Posted 08 February 2011 - 04:08 AM

I'd like to hear more about rest tissue and NP59. Is rest tissue in the adrenal bed typically cause by the surgeon not removing all of the gland or does it grow back?

Anything about cortisol pumps?

#23 Jo MacRaild

 

    Over 2000 Posts

  • Over 2000 Posts
  • 3,583 posts
  • Location:Edinburgh

  • Scotland

  • Gender:
 

Posted 08 February 2011 - 01:08 PM

Thank you ladies, congrats on all your continuing hard work.

I'd really like to know what A big ACTH response to CRH , but no cortisol increase is indicative of. & if theres any significance in the ACTH response doubling whilst on DDAVP .


Thanks, I know the good doctors time is precious, but its one I've never got an answer on, & think I'll be lifting the lid of my box , saying, hang on, before I go..any one know ??

#24 ltw

 

    Chatty Cushie

  • ChattyCushie
  • 883 posts
  • Gender:Female
  • Location:North Florida

  • United States

  • Gender:
 

Posted 08 February 2011 - 05:34 PM

Question on ACTH stim test...From what I understand, your cortisol should double from baseline. If one starts at 21 baseline, and then drops to 13 after the stim, can any conclusion be made about the function of the adrenals?
Thanks.
LisaMarie

#25 gumdrop

 

    Over 2000 Posts

  • Over 2000 Posts
  • 2,338 posts
  • Gender:Not Telling

  • United States

  • Gender:
 

Posted 08 February 2011 - 09:05 PM

If a person is cured/has a remission from Cushings and ALL hormones are balanced, then why don't many people see a return of their libido? Could it possibly be a neurotransmitter deficiency?

#26 alicia

 

    Chatty Cushie

  • ChattyCushie
  • 870 posts
  • Location:connecticut
  • Gender:
 

Posted 08 February 2011 - 10:34 PM

If a person is cured/has a remission from Cushings and ALL hormones are balanced, then why don't many people see a return of their libido? Could it possibly be a neurotransmitter deficiency?


Similar question as above....
If a person is cured/has a remission from Cushings and ALL hormones are balanced, then why do some still have trouble losing any weight?

#27 Nillie

 

    Nillie

  • Member of the 1000 Post Club
  • 1,843 posts
  • Location:Utah
  • Interests:Love to mountain bike, road bike, cross country ski, cook and sing.

  • United States

  • Gender:
 

Posted 09 February 2011 - 01:05 AM

I am excited too! Thanks for putting this together...

My question is:

After a BLA, if someone has Cushie symptoms come back even though they have lowered their Hydro (and no AI results), what could cause that? Is it possible if a dosage of Hydro is too low that symptoms like weight gain or swelling, central obesity could come back....maybe because the body could be thinking it is in reserve mode with in-adequate replacement and hold on to any food we eat or hold on to cortisol...?? Not sure if my question makes sense.

2nd: Does Cushings possibly cause a problem with a person's metabolic "set" point? If so, could that make it difficult to lose weight even if someone is cured?

Thought of another one...

After a BLA, how do you know if you are cured? My thinking leads to believe that if you get AI kind of easily with physical or emotional stress or activity and your symptoms are improving - you would be cured. But, if neither of those things are happening and your labs show your replacement doses are correct, does that mean you are not cured? If a person seems to be "cycling" after a BLA, what would cause that?

#28 monarchmomx2

 

    Long-time Board Member

  • Long-time Board Member
  • 353 posts
  • Gender:Female
  • Location:central Ohio
  • Interests:very blessed to have a loving supportive family of my husband and two daughers, age 16 and 20. I love scrapbooking/card making and am a bit of a "Disney freak", I volunteer at a local pantry serving on the Task Force, active member of Church and Emmaus

  • United States

  • Gender:
 

Posted 09 February 2011 - 01:56 PM

I have a question from the standpoint of undiagnosed and testing and/or awaiting appointments, as we know this phase can last quite a long time. Prior to my health decline I was an avid exerciser, for 15 years. I don't exercise because I love it, I do it to maintain a healthy weight and for the physical benefits that go along with doing so (energy, feeling strong, flexibility, mental health, etc) I find myself confused now. When I do exercise, my heart rate shoots up to my upper limit target heart range to even my max heart rate in no time at all. I have no stamina, my muscles are so weak it's difficult to sustain any length of time beyond 20-30 mins. For the remainder of the day I find I am not productive at all due to even more increased fatigue. Often I am sore for couple days, though I am exercising at a very low intensity comparitively. Realistically, it doesn't make sense to exert the energy, only to be set back for the remainder of the day. If I have anything I need to accomplish that day, I do not exercise for fear that I won't be able to make it through what I have to get done. Beyond that, I see no physcial results, i do not lose weight, my once toned muscles are now hidden under a layer of fat, and i have lost a substanstial amount of my flexibility. Clearly this situation is not motivating to workout, but it goes against all i have worked for in making a healthy lifestyle. At this point, are there benefits to exercising that outweigh the negative impact it has on quality of my day and productivity? It is enough to remain as mobile and active during the day as possible...after all carrying a load of laundry up the stairs puts me into my target heart rate zone for a few minutes :)

again, as many of already said..Thank you Dr F. for your efforts in educating both patients and endo's in Cushing's and for your time you give to people like me who desperately seek a diagnosis beyond 'diet and exercise', and for believing us when we tell you there is more than that going on!

#29 monarchmomx2

 

    Long-time Board Member

  • Long-time Board Member
  • 353 posts
  • Gender:Female
  • Location:central Ohio
  • Interests:very blessed to have a loving supportive family of my husband and two daughers, age 16 and 20. I love scrapbooking/card making and am a bit of a "Disney freak", I volunteer at a local pantry serving on the Task Force, active member of Church and Emmaus

  • United States

  • Gender:
 

Posted 09 February 2011 - 02:21 PM

one more -- what is the good Doctor's thoughts on pseudo-Cushings? it is a valid diagnosis in today's medicine?

#30 maddiesmom

 

    Chatty Cushie

  • ChattyCushie
  • 593 posts
  • Gender:Female
  • Location:Illinois

  • United States

  • Gender:
 

Posted 09 February 2011 - 08:21 PM

I would really like to ask why so many of us are still feeling so poorly after having a BLA. And I don't mean just a couple of months after a BLA, I mean those of us that have waited it out and still aren't feeling cured. I still have ALL of my Cushing's symptoms and am much worse off since my BLA.

I would also like to hear more about the PET scan with cosyntropin to find rest tissue/ residual tissue.
Also, are there other ways to look for rest tissue?

Thanks!

#31 Nillie

 

    Nillie

  • Member of the 1000 Post Club
  • 1,843 posts
  • Location:Utah
  • Interests:Love to mountain bike, road bike, cross country ski, cook and sing.

  • United States

  • Gender:
 

Posted 09 February 2011 - 10:20 PM

I would really like to ask why so many of us are still feeling so poorly after having a BLA. And I don't mean just a couple of months after a BLA, I mean those of us that have waited it out and still aren't feeling cured. I still have ALL of my Cushing's symptoms and am much worse off since my BLA.

I would also like to hear more about the PET scan with cosyntropin to find rest tissue/ residual tissue.
Also, are there other ways to look for rest tissue?

Thanks!



I second the question above. It seems the PET scan is the last possible tool to use in finding rest tissue. Would like to know how effective a PET scan is in finding rest tissue.

#32 ErinG

 

    Long-time Board Member

  • Long-time Board Member
  • 208 posts
  • Gender:Female
  • Location:Dayton, Ohio
  • Interests:I love nature, dogs especially Boston Terriers, art, psychology, and sports. I am hoping to get into grad school in psychology.

  • United States

  • Gender:
 

Posted 10 February 2011 - 01:42 AM

Dr.F.,
What are they symptoms of Rest tissue after a Bla? Can you have symptoms of Cushings and Addisons. And how do you test for Rest tissue?

#33 ltw

 

    Chatty Cushie

  • ChattyCushie
  • 883 posts
  • Gender:Female
  • Location:North Florida

  • United States

  • Gender:
 

Posted 10 February 2011 - 05:05 PM

Mary, Please note this question is not at all meant to be offensive. I know Dr F well enough I could ask him this in person, but since there won't be names attached to the questions, if you think it is too forward, just delete. Thanks.
LisaMarie


On a more "nosey" note...We appreicate all your help, care, and concern that you show to all your patients. We also appreciate all your hard work dedicated to research in the hopes that you can discover things that will allow you and other good doctors to help us better, and sooner. Since so many people have come to rely on you as their main cushings doctor, any plans to expand your "online office"? We realize their are only so many hours in the day, so I doubt you could expand your practice hours, but maybe another assistant to help with paperwork, etc.? With all the modern technology available today, maybe someone could help out remotely/electronically and take some of the burden off Lynne.

Just a thought...

#34 maddiesmom

 

    Chatty Cushie

  • ChattyCushie
  • 593 posts
  • Gender:Female
  • Location:Illinois

  • United States

  • Gender:
 

Posted 10 February 2011 - 05:08 PM

Awesome question Lisa Marie!

#35 missaf

 

    Cushie since birth

  • Over 2000 Posts
  • 3,748 posts
  • Gender:Female
  • Location:California

  • United States

  • Gender:
 

Posted 10 February 2011 - 07:08 PM

Non-cushie question:

Do you believe there's a connection between Fybromyalgia and thyroid disease, and what that connection might be?

#36 monarchmomx2

 

    Long-time Board Member

  • Long-time Board Member
  • 353 posts
  • Gender:Female
  • Location:central Ohio
  • Interests:very blessed to have a loving supportive family of my husband and two daughers, age 16 and 20. I love scrapbooking/card making and am a bit of a "Disney freak", I volunteer at a local pantry serving on the Task Force, active member of Church and Emmaus

  • United States

  • Gender:
 

Posted 10 February 2011 - 08:51 PM

one more if I haven't worn-out my welcome -- I read an article that massage can lower cortisol, it was on the benefits of massage and one of those benefits was lowering cortisol. Is that a concern for someone who is testing? If so, how long would the effects of the massage last?

#37 betseebee

 

    betseebee

  • Over 2000 Posts
  • 2,008 posts
  • Gender:Female
  • Interests:Acrylic painting, writing, reading

  • United States

  • Gender:
 

Posted 12 February 2011 - 07:09 AM

If a person has undergone two pituitary surgeries and the pathology reports have come back showing normal tissue each time, with no ACTH secretion and no pituitary hyperplasia, then why would IPSS (done at a reputable center) have shown a clear-cut pituitary source?

#38 rooon55

 

    Over 2000 Posts

  • Over 2000 Posts
  • 4,330 posts
  • Location:Hinesburg, Vermont

  • United States

  • Gender:
 

Posted 13 February 2011 - 04:18 PM

I have a question about renin and Florinef (Fludrocortisone Acetate) in a Post op pit patient. After two Pituitary surgeries and 3 1/2 years in remission with no adrenal function. Wouldn't the adrenals be atrophied and not producing properly? With all hormones balanced would adding a little Florinef be beneficial ? Would it help with swelling? If so what is the proper testing and how is it properly done?

#39 hockeygirl

 

    Over 2000 Posts

  • Over 2000 Posts
  • 2,805 posts
  • Location:Washington State
  • Interests:Hockey, hockey, hockey, and hockey. Along with Disney, anything Disney. I love to shop, too bad I can't fit into anything I like. Ha ha ha. I wish I looked better so that I could get an acting gig.

  • United States

  • Gender:
 

Posted 13 February 2011 - 05:07 PM

How common is it for things like asthma to reappear or get worse after a BLA? Since mine has reappeared with a vengeance, I've had to be placed on a steroid inhaler plus albuterol. Does cortef dosing need to be adjusted to account for the extra steroids in the inhaler or is it such a small dose it doesn't matter?

Thanks.

#40 Nillie

 

    Nillie

  • Member of the 1000 Post Club
  • 1,843 posts
  • Location:Utah
  • Interests:Love to mountain bike, road bike, cross country ski, cook and sing.

  • United States

  • Gender:
 

Posted 13 February 2011 - 05:17 PM

What are your thoughts on pregnancy after BLA? I am aware of 1 person who had successful delivery after BLA and 1 who was pregnant, but don't know the outcome.

I am wondering if these two were just lucky, or if it is very possible as long as adequate steroids are taken. If someone still has very significant osteoporosis and swelling before getting pregnant, could pregnancy compound those issues and make the pregnancy much more difficult or even dangerous since being pregnant puts a lot of weight on the mother (hard for the osteoporatic bones to support) and since a lot of people swell when pregnant, swelling could be even worse and unhealthy as well increasing the persons weight even more? Could toxemia be a higher possibility post BLA due to increased steroids? What other concerns would there be?

Thanks!




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users