PRODGIRL
12-21-2005, 11:03 PM
So, I was just told by my MD that my Cortisol is elevated which is what is most likely contributing to my weight gain and exhaustion. She needs to refer me to an Endocrinologist for further testing.
Any suggestions would be appreciated.
Any suggestions would be appreciated.
Sponsor
annemv
12-29-2005, 08:27 AM
It appears that your doctor is suspecting cushings.
Do you have other symptoms?
Do you know the endo that you are going to see? That is very important!!
I am in the process of getting diagnosed with this myself and it can be a very long haul.
Let me know if I can help.
Anne
ps put cushings in your browswer and you will find a great site!!
Do you have other symptoms?
Do you know the endo that you are going to see? That is very important!!
I am in the process of getting diagnosed with this myself and it can be a very long haul.
Let me know if I can help.
Anne
ps put cushings in your browswer and you will find a great site!!
PRODGIRL
01-12-2006, 12:24 AM
Hi Anne,
Have you learned anything further about Cushing's?
I am hoping you can help me shed some light while I wait until I see the endocrinologist on 1/30.
My MD ran many blood panels on me and one came back with an 'elevated cortisol' - she thinks my Cortisol could be Cushing's Syndrome...She did talk with the endocrinologist and he told her to have me take the dexamethasone prior to my next panel.
However, my MD has said this is out side her realm of experience and really can't help me out any further.
My readings are:
12/16/05 - Fasting
Low: 31.5
High: 3.1
Normal Range 22.4 ug/dl
1/3/06 - Fasting with dexamethasone
Low: 1.3
High: 3.1
Normal Range 22.4 ug/dl
Thanks~
Heather
Have you learned anything further about Cushing's?
I am hoping you can help me shed some light while I wait until I see the endocrinologist on 1/30.
My MD ran many blood panels on me and one came back with an 'elevated cortisol' - she thinks my Cortisol could be Cushing's Syndrome...She did talk with the endocrinologist and he told her to have me take the dexamethasone prior to my next panel.
However, my MD has said this is out side her realm of experience and really can't help me out any further.
My readings are:
12/16/05 - Fasting
Low: 31.5
High: 3.1
Normal Range 22.4 ug/dl
1/3/06 - Fasting with dexamethasone
Low: 1.3
High: 3.1
Normal Range 22.4 ug/dl
Thanks~
Heather
lucky charms
01-20-2006, 02:50 PM
It appears that your doctor is suspecting cushings.
Do you have other symptoms?
Do you know the endo that you are going to see? That is very important!!
I am in the process of getting diagnosed with this myself and it can be a very long haul.
Let me know if I can help.
Anne
ps put cushings in your browswer and you will find a great site!!
Im curious about this as well, How elevated does the cortisol levels have to be before it can be considered cushings..Reason why I ask my blood test showed pm elevated cortisol levels and salvia test showed am and pm elevation..Sorry i dont mean to hijack a thread but this is interesting. my drs look at as oh well you are stressed. take care
Do you have other symptoms?
Do you know the endo that you are going to see? That is very important!!
I am in the process of getting diagnosed with this myself and it can be a very long haul.
Let me know if I can help.
Anne
ps put cushings in your browswer and you will find a great site!!
Im curious about this as well, How elevated does the cortisol levels have to be before it can be considered cushings..Reason why I ask my blood test showed pm elevated cortisol levels and salvia test showed am and pm elevation..Sorry i dont mean to hijack a thread but this is interesting. my drs look at as oh well you are stressed. take care
annemv
01-21-2006, 10:57 AM
Cushing is very complicated.
I always thought that I had some type of adrenal insufficiency, since my cortisol and acth are low in the morning. But at the same time I had more cushing symptoms. I also have a pit tumor and am secondary hypothyroid and am in the process of getting diagnised with growth hormone deficiency. :eek: and to think I just thought I had a little thyroid problem.
Anyway, I went to lots of docs who said there is nothing wrong with me.
I had a saliva test show low am, low pm, and not too high but higher midnight. My urine and blood cortisol and acth's were all over the place.
After a few years of this I finally decided to go see a specialist in Los Angeles.
I wish that I would have spent the money and h=gne to him right away!
He believes that I have cyclical cushings. He thinks the tumor may release too much stuff in periods. Which explains my syptoms. It does seem to me know that I am getting more regular cushing symptoms.
My problem cold also be GH deficiency or both.
So, for now I do 24 hr urines and midnight saliva tests.
This can be a lond tedious process.
But, at the same time you both already have elevated cortisol.
I would not take it lightly!!!
Like Me, the docs are MUCH worse at this than thyroid.
So if I were you girls I would go to a specialist, a real specialist.
I would also insist on an MRI of brain with and with out contrast, dynamic if possible.
If nothing shows there tehn ask for a scan of the adrenals.
I really don't know that much about cushings, but it does seem to be progressive, not everyone has all the symptoms(bruising, stretch marks).
Good Luck to you both and please find a good doctor!!!
I always thought that I had some type of adrenal insufficiency, since my cortisol and acth are low in the morning. But at the same time I had more cushing symptoms. I also have a pit tumor and am secondary hypothyroid and am in the process of getting diagnised with growth hormone deficiency. :eek: and to think I just thought I had a little thyroid problem.
Anyway, I went to lots of docs who said there is nothing wrong with me.
I had a saliva test show low am, low pm, and not too high but higher midnight. My urine and blood cortisol and acth's were all over the place.
After a few years of this I finally decided to go see a specialist in Los Angeles.
I wish that I would have spent the money and h=gne to him right away!
He believes that I have cyclical cushings. He thinks the tumor may release too much stuff in periods. Which explains my syptoms. It does seem to me know that I am getting more regular cushing symptoms.
My problem cold also be GH deficiency or both.
So, for now I do 24 hr urines and midnight saliva tests.
This can be a lond tedious process.
But, at the same time you both already have elevated cortisol.
I would not take it lightly!!!
Like Me, the docs are MUCH worse at this than thyroid.
So if I were you girls I would go to a specialist, a real specialist.
I would also insist on an MRI of brain with and with out contrast, dynamic if possible.
If nothing shows there tehn ask for a scan of the adrenals.
I really don't know that much about cushings, but it does seem to be progressive, not everyone has all the symptoms(bruising, stretch marks).
Good Luck to you both and please find a good doctor!!!
pams37
03-12-2006, 10:46 PM
Hello every-one,
I tooo might have Cushing's Disease or Syndrome.
Back in 1990 when I was like 20 years old I had hormonal imbalance.
My mother told me to go to my family doctor and ask why I have so much hair growing on my face.
Plus back then OHIP would cover treatments for hormonal imbalances(now they don't)
I had electrolisis done on my face.(for like 10 years)
Anyways back in 1990 the doctor sent me to see a hormone doctor.
he told me I had PCOS(Polyistic Ovarian Syndrome)
Plus he told me that I had elevated allll male hormones.
Plus my Estrogen was tooo high.Plus elevated cortisol.
But they never told me that what the people wrote on my lab report was Cushing's Syndrome.
My doctor never ever told me about cushing's.
They told me to just go on birth control pillls and that's that(they acted like it's a darn magic pilll)
They said my hormones willl be better and I don't have to worry any-more.
YEAHHH RIGHT.
But you know some-thing.
Just last summer I have been having problems(with my health)
Anxiety,depression,marks alll over abdomen,breasts,legs,They are more like Cushing's marks(stries)or stretch marks.
But when this started happening I also lost like 30 pounds(from July-Sept)
I thought wowwww.I'm losing weight.
But then I realized it was not fat I was losing.I was losing alll nutrients your body needs.
Now my uric acid in body is low and Potassium is gettting low and my protein is high for blood work.
But this to me sounds like Cushing's disease.
Anyways so from Sept-Dec I kept going for these pathetic ultrasounds.
of course they found nothing.
Welll in Sept they found in my uterus(get this)they found my uterus made of Nabothian cysts and 6mm of thickness of lining of uterus.
Plus I have been in pain down in pelvic area.
But now I'm not really in pain down in pelvic area as much now(just when my periods come)but I have not ovulated I guess since July(I keep track of these things)
Ohhh plus in Sept when alll these things were happening to me okk my groin(I guess it's the lymph gland)it swellled out(groin)
It's been swelled since Sept.
It does not hurt and it does not get any bigger now(It was getting more swelled until I guess Nov,Dec)
Now it just stays swellled,also I have discharge from it(it does not hurt)sorry to sound gross but it just smellls very very bad.
But nooo burning,just discharge that wont go away.
They did at least 5 lab tests on it.four times it came back not knowing what it was.
Then the last one said Pus Cells(I know lymph would smelll bad and say Pus cells)that's what I read.
Ok so basicallly I really had nooo help with doctors.
Noo one knew what was going on in my darn body.I was getting frustarated.
Ultrasounds keep saying it's nothing,just gas in abdomen.
So basically doctors would say it's in your head.Just don't think of the pain and it willl allll go away(ohh yes,don't I wish)
So finally I thought okkkk maybe I willl go see a hormone doctor.
Within 1 weeek I got in.
She was upset that I had PCOS since 1990 and nooo doctors watching over my uterus.
So right away she did blood work for every hormone you can think of.
But when I went in to see her they checked my blood sugar(pricked my finger)felt weird.I never had that done before.
She told me my blood sugar was high and what did I eat.I told her I had one thing(hot dog)4 hrs before seeing her.
But then I told her that I think I might have elevated Cortisol(she said yep that would do it)
She said having one thing to eat would not make it go that high.
She said it was'nt tooo high.But high enough where they need to investigate it.
So anyways she said that she wanted me to have a CT scan (I guess once the results for blood work came back)
Ok the last time I had cortisol checked(in 1990)they just chcked my blood once for Cortisol.
But the one I had done this year was the morning and afternooon test.
It was a pain having to go to lab at 8am(with 2 smalll children)then back with them again by 4pm.
GLAD IT"S OVER.
So within a weeek they got the tests back and they called me right away.
They said they boooked CT scan for fulll abdomen(or body and for Pelvic area)
But get this.It's not until middle of June(I'm pisssed)
So this Wed I am going to go and see her.
I need to know what they think they found and what is elevated.
I willl keep you alll updated ok.
I just have a feeling that Cortisol is elevated.Some-thing is damaging my liver.
Ohhh back in Sept they just found a Fattty liver.
I read that cortisol damages your liver(especially if it's elevated)
Plus I'm always tired.I need to sleep alll the time and I never seem to have any energy at alll.
Plus my kneees are always hurting me.Walking up just 2 stairs and I feeel like I just walked up 30 or 40.
It just hurts so bad.My back tooo hurts.Every-thing.
Ok every-one I willl keep you alll updated.
Pamela
I tooo might have Cushing's Disease or Syndrome.
Back in 1990 when I was like 20 years old I had hormonal imbalance.
My mother told me to go to my family doctor and ask why I have so much hair growing on my face.
Plus back then OHIP would cover treatments for hormonal imbalances(now they don't)
I had electrolisis done on my face.(for like 10 years)
Anyways back in 1990 the doctor sent me to see a hormone doctor.
he told me I had PCOS(Polyistic Ovarian Syndrome)
Plus he told me that I had elevated allll male hormones.
Plus my Estrogen was tooo high.Plus elevated cortisol.
But they never told me that what the people wrote on my lab report was Cushing's Syndrome.
My doctor never ever told me about cushing's.
They told me to just go on birth control pillls and that's that(they acted like it's a darn magic pilll)
They said my hormones willl be better and I don't have to worry any-more.
YEAHHH RIGHT.
But you know some-thing.
Just last summer I have been having problems(with my health)
Anxiety,depression,marks alll over abdomen,breasts,legs,They are more like Cushing's marks(stries)or stretch marks.
But when this started happening I also lost like 30 pounds(from July-Sept)
I thought wowwww.I'm losing weight.
But then I realized it was not fat I was losing.I was losing alll nutrients your body needs.
Now my uric acid in body is low and Potassium is gettting low and my protein is high for blood work.
But this to me sounds like Cushing's disease.
Anyways so from Sept-Dec I kept going for these pathetic ultrasounds.
of course they found nothing.
Welll in Sept they found in my uterus(get this)they found my uterus made of Nabothian cysts and 6mm of thickness of lining of uterus.
Plus I have been in pain down in pelvic area.
But now I'm not really in pain down in pelvic area as much now(just when my periods come)but I have not ovulated I guess since July(I keep track of these things)
Ohhh plus in Sept when alll these things were happening to me okk my groin(I guess it's the lymph gland)it swellled out(groin)
It's been swelled since Sept.
It does not hurt and it does not get any bigger now(It was getting more swelled until I guess Nov,Dec)
Now it just stays swellled,also I have discharge from it(it does not hurt)sorry to sound gross but it just smellls very very bad.
But nooo burning,just discharge that wont go away.
They did at least 5 lab tests on it.four times it came back not knowing what it was.
Then the last one said Pus Cells(I know lymph would smelll bad and say Pus cells)that's what I read.
Ok so basicallly I really had nooo help with doctors.
Noo one knew what was going on in my darn body.I was getting frustarated.
Ultrasounds keep saying it's nothing,just gas in abdomen.
So basically doctors would say it's in your head.Just don't think of the pain and it willl allll go away(ohh yes,don't I wish)
So finally I thought okkkk maybe I willl go see a hormone doctor.
Within 1 weeek I got in.
She was upset that I had PCOS since 1990 and nooo doctors watching over my uterus.
So right away she did blood work for every hormone you can think of.
But when I went in to see her they checked my blood sugar(pricked my finger)felt weird.I never had that done before.
She told me my blood sugar was high and what did I eat.I told her I had one thing(hot dog)4 hrs before seeing her.
But then I told her that I think I might have elevated Cortisol(she said yep that would do it)
She said having one thing to eat would not make it go that high.
She said it was'nt tooo high.But high enough where they need to investigate it.
So anyways she said that she wanted me to have a CT scan (I guess once the results for blood work came back)
Ok the last time I had cortisol checked(in 1990)they just chcked my blood once for Cortisol.
But the one I had done this year was the morning and afternooon test.
It was a pain having to go to lab at 8am(with 2 smalll children)then back with them again by 4pm.
GLAD IT"S OVER.
So within a weeek they got the tests back and they called me right away.
They said they boooked CT scan for fulll abdomen(or body and for Pelvic area)
But get this.It's not until middle of June(I'm pisssed)
So this Wed I am going to go and see her.
I need to know what they think they found and what is elevated.
I willl keep you alll updated ok.
I just have a feeling that Cortisol is elevated.Some-thing is damaging my liver.
Ohhh back in Sept they just found a Fattty liver.
I read that cortisol damages your liver(especially if it's elevated)
Plus I'm always tired.I need to sleep alll the time and I never seem to have any energy at alll.
Plus my kneees are always hurting me.Walking up just 2 stairs and I feeel like I just walked up 30 or 40.
It just hurts so bad.My back tooo hurts.Every-thing.
Ok every-one I willl keep you alll updated.
Pamela
orion
03-13-2006, 10:08 AM
I suggest you look up the pituitary tumor network, a non-profit organization dedicated to helping people with pituitary tumors.
pams37
03-13-2006, 02:48 PM
Helllo Orion,
That's what I'm thinking tooo.
That's why I want to go and see the hormone doctor this Wed,I hope she is honest with me and tellls me what she thinks.
I hate when doctors don't telll you much(especially if they sort of know)
I know they don't want to scare you(until the CT scan says every-thing)but I have been going through a rough time since the darn summer.
Things are getting worse instead of better(just energy wise and I'm also losing a lot of I mean like so much fluid in my darn body)
I keep losing weight.My family keep saying how good I look.
But deep down I know it's not fat I'm losing.It's alll the nutrients you need for energy.
But if it is to do with a tumor or Cushing's.I don't want pittty or sadness from my family.
Alll I want is understanding.They don't realize how right now I feeel so useless as a parent.
I have a beautiful son(who just turned 7)he also has Tourettes,ADHD,Compulsive disorder.So it's so hard raising a child who needs your attention.
I try my best.But I want my family to understand that I'm trying as best as I can with my 2 beautiful children.
I'm trying.But I know my family don't mean to do this.
But they make you feeeel like you are so lazzy and don't care.
I care.But just tooo much going through my mind.
I'm so close to getting diagnoised.But I know my family willl flip if they know it's Cushing's or any kind of disease.
But I know Pituitary tumors or Adrenal tumors are reallly not that bad(compared to getting tumors that cause cancer)
But the only thing bad about pituitarys and Adrenal tumors is I read that the tumors do keep coming back.
Thanks and I willl keep you posted
Thanks from Pamela
That's what I'm thinking tooo.
That's why I want to go and see the hormone doctor this Wed,I hope she is honest with me and tellls me what she thinks.
I hate when doctors don't telll you much(especially if they sort of know)
I know they don't want to scare you(until the CT scan says every-thing)but I have been going through a rough time since the darn summer.
Things are getting worse instead of better(just energy wise and I'm also losing a lot of I mean like so much fluid in my darn body)
I keep losing weight.My family keep saying how good I look.
But deep down I know it's not fat I'm losing.It's alll the nutrients you need for energy.
But if it is to do with a tumor or Cushing's.I don't want pittty or sadness from my family.
Alll I want is understanding.They don't realize how right now I feeel so useless as a parent.
I have a beautiful son(who just turned 7)he also has Tourettes,ADHD,Compulsive disorder.So it's so hard raising a child who needs your attention.
I try my best.But I want my family to understand that I'm trying as best as I can with my 2 beautiful children.
I'm trying.But I know my family don't mean to do this.
But they make you feeeel like you are so lazzy and don't care.
I care.But just tooo much going through my mind.
I'm so close to getting diagnoised.But I know my family willl flip if they know it's Cushing's or any kind of disease.
But I know Pituitary tumors or Adrenal tumors are reallly not that bad(compared to getting tumors that cause cancer)
But the only thing bad about pituitarys and Adrenal tumors is I read that the tumors do keep coming back.
Thanks and I willl keep you posted
Thanks from Pamela
BorderGirl
03-27-2006, 08:17 PM
Someone asked how high cortisol has to be. My excellent endocrinologist began testing me for Cushings before I ever had an elevated reading due to some other abnormal labs and the presence of a pituitary tumor. Long story short, he still tests me every 3 months and we have watched my cortisol level slowly increase over the last 3 years. My dad asked him if it could be stress related and he said no way. So we'll keep watching and waiting and hopefully I stay asymptomatic. I'd encourage anyone who has tested high for cortisol to get an MRI and find an endocrinologist to stay on top of it.
berniluvspat
04-16-2006, 12:32 AM
Wow, this is so interesting. Last week, my hubby and I were watching the discovery channel and there was a medical show on. A woman was on saying she has been gaining weight, no dr would believe her. Losing her hair, hump on her back etc. My hubby looked at me and said I want you to have a dr appt tomorrow. You have a hump on your back by your neck. He never said anything to me, but had been keeping a eye on it. So the next day, called my hmo and got a appt. Not with my regular md, because he would of blown me off. My hubby actually came with me, and this dr was so nice. He checked my back out, and of course I have had awful searing pain in my hips going into my legs for about a year now. I had to start using a cane, because the pain was unbearable. I have looked up the symptoms of cushings and I am kinda scared. I have many of them. The dr ordered a 8 am cortisol test, but the labs didn't open till 8:30 and I didn't get in till 9. I hope that doesn't make a difference. But thanks all for the info.
berni :)
berni :)
BorderGirl
05-24-2006, 12:16 AM
This is a very late reply so I'm not sure if you'll get it, but make sure they do a 24 hour urine test in addition to the serum cortisol. You need both to get best results.