On one of the low carb message boards I frequent, there is a person who maybe needs to be evaluated for Cushing's. Maybe.
I do think Cushing's is more frequent than we realize. There was a study that found many diabetics also had Cushing's. There's also a number of PCOS patients who actually have Cushing's. Not that they will ever be evaluated for it. Because it's so rare, you see. So why ever test for it, right?
Just to make it more fun, in case you didn't know, the care for Cushing's is poor, usually requires travel, is expensive and it's all on the patient to make medicine work for them. Which is like pulling teeth and very stressful.
A Cushing's diagnosis is not a magic bullet.
I gave my advice to the person and warned them to keep their expectations low of endocrinologists. Not only do endos routinely see thyroid and diabetic patients (seemingly) to the exclusion of all else, I suspect they also get a decent number of patients who think their weight issues are hormonal.
Which they are, technically, but, practically, medicine has little to offer.
Hormonal anything is a crappy diagnosis. We can't even get consensus on thyroid testing and care, which is a common problem! The care just gets worse from there.
So they came back and wrote something to the effect 'is it wrong that I want my weight problem to be Cushing's?'
*bangs head against wall*
After the hell I've been through? Yeah, it's wrong. There is nothing easy about a hormonal problem.
What should they want? What I want! Which is an easy diagnosis that tests well (plus doctors willing to do the tests) with an established and effective solution.
Given my experience thus far as a patient, I think that kind of diagnosis is a pipe dream.
What was the last slam dunk diagnosis you had? I think mine was pregnancy.
Showing posts with label pcos and cushings. Show all posts
Showing posts with label pcos and cushings. Show all posts
Monday, August 1, 2011
Saturday, April 17, 2010
Subclinical Cushings Syndrome...Or Things that Make Me Go Hmmmm
Look, I'm not saying I have Subclinical Cushings Syndrome or even Cushings Syndrome proper, but it would probably be prudent to rule it out at this juncture. At least from this patient's perspective.
The thing is, my gut has been screaming at me that something has been missed for a few years now. I'm not claiming to be a psychic or anything, but I always listen to my gut. It told me I had asthma when I was 12. It's been right more often than the doctors have (sorry to say).
So I don't know what's going on, but I have this uneasy feeling that we've missed something.
There are several things that have struck me as 'wrong' with the PCOS diagnosis.
I used to be a peer counselor for women going through infertility. I noticed I had nothing in common with them medically. They had mothers with PCOS, extended family with Diabetes. I have no family history. I even went back and asked third, fourth, fifth cousins--I was calling people who didn't even know who I was! You would think someone would have PCOS or Diabetes, but nope. No one.
These other women also lost weight with simple exercise and reduced calorie diets that were high in carbs. That boat sailed for me once I had Cushings (from prednisone for those who are new to this blog) and sank somewhere, never to return.
The fact I had Cushings previously has niggled and gnawed at me for a long time now. I don't think I came by my PCOS honestly especially considering I had cycles before the Cushings--everything starts with the Cushings. Some doctors have agreed with my hunch.
The other women with PCOS I talked to hyperstimulated and their ovaries 'blew up' with infertility drugs. I did multiple injectible cycles and barely grew any follicles. In fact, injectibles were a dismal failure. Although with IVF, I did end up with ovarian hyperstimulation syndrome, quite seriously too.
So anyway, I just keep reading, looking for ideas. Below is the research I've found recently. It has been helpful for me as a patient, as there are things in my medical history I hadn't thought to mention that actually might be relevant for my upcoming endocrinology appointment. (I will be posting the agenda for that doctor visit including my history, if anyone is interested in playing along at home. Also there are 2 posts coming up on my experiences with Cushings.)
The main point of the research is, if you have PCOS, be sure you are screened for Cushings because it is CURABLE. It's rare still and we all still probably have PCOS, but Good Lord, ladies a few of us could be CURED. It's worth the effort to get the lab work done.
(And actually I ran across a few studies talking about how Cushings is more common in Diabetes than previously thought. Looks like quite a few people should be screened.)
Here's the research. Links are provided to the source below each quote.
"With an estimated prevalence of 79 cases per 100,000 persons, subclinical Cushing's syndrome is much more common than classic Cushing's syndrome. Depending on the amounts of glucocorticoids secreted by the tumor, the clinical spectrum ranges from slightly attenuated diurnal cortisol rhythm to complete atrophy of the contralateral adrenal gland with lasting adrenal insufficiency after unilateral adrenalectomy. Patients with subclinical Cushing's syndrome lack the classical stigmata of hypercortisolism but have a high prevalence of obesity, hypertension, and type 2 diabetes."
Source
"In conclusion, we definitely need studies in putative high-risk patients for SCS such as women with PCOS." I can't find much other than this tid bit that says PCOS is a risk for SCS.
Source
"Recent studies, however, have reported increasing evidence that subtle cortisol production and abnormalities in the hypothalamic-pituitary-adrenal (HPA) axis are more frequent than previously thought.
In conclusion, an unexpectedly high prevalence of subtle autonomous cortisol secretion, associated with high occurrence of hypertension, diabetes mellitus, elevated lipids, and diffuse obesity, was found in incidentally discovered adrenal adenomas. Although the pathological entity of a subclinical hypercortisolism state remained mostly stable in time during follow-up, hypertension, metabolic disorders, and hormonal abnormalities improved in all patients treated by adrenalectomy. These findings support the hypothesis that clinically silent hypercortisolism is probably not completely asymptomatic."
Source
And here's the mother lode...other patients with PCOS who actually had Cushings.
"Clinical and/or biochemical hyperandrogenism with menstrual infrequency is found commonly in women with Cushing's syndrome. In fact, there are data to suggest that menstrual irregularity is linked to the level of glucocorticoid excess rather than to androgen levels.[7] Ovarian cysts are certainly not discriminatory; they are present in almost half of women with Cushing's syndrome.[12] It is also noteworthy that cysts, in isolation, do not predict the development of PCOS;
...the overlap between syndromes is large and, thus, screening tests are needed to exclude Cushing's syndrome .
Most importantly, all definitions of PCOS require the exclusion of other causes of hyperandrogenism; failure to do so increases the potential for misdiagnosis.[1,7] Although the present case illustrates this risk on its own, we know of three other cases in which an original diagnosis of PCOS became revised to that of Cushing's syndrome ( Table 1 ). Upon curative treatment, all symptoms, originally attributed to PCOS, resolved. The diagnosis, treatment and management of Cushing's syndrome have been the subject of recent discussion in this journal.[4] Here, we address the importance of correctly distinguishing Cushing's syndrome from PCOS to minimize the risk of misdiagnosis."
Source
The thing is, my gut has been screaming at me that something has been missed for a few years now. I'm not claiming to be a psychic or anything, but I always listen to my gut. It told me I had asthma when I was 12. It's been right more often than the doctors have (sorry to say).
So I don't know what's going on, but I have this uneasy feeling that we've missed something.
There are several things that have struck me as 'wrong' with the PCOS diagnosis.
I used to be a peer counselor for women going through infertility. I noticed I had nothing in common with them medically. They had mothers with PCOS, extended family with Diabetes. I have no family history. I even went back and asked third, fourth, fifth cousins--I was calling people who didn't even know who I was! You would think someone would have PCOS or Diabetes, but nope. No one.
These other women also lost weight with simple exercise and reduced calorie diets that were high in carbs. That boat sailed for me once I had Cushings (from prednisone for those who are new to this blog) and sank somewhere, never to return.
The fact I had Cushings previously has niggled and gnawed at me for a long time now. I don't think I came by my PCOS honestly especially considering I had cycles before the Cushings--everything starts with the Cushings. Some doctors have agreed with my hunch.
The other women with PCOS I talked to hyperstimulated and their ovaries 'blew up' with infertility drugs. I did multiple injectible cycles and barely grew any follicles. In fact, injectibles were a dismal failure. Although with IVF, I did end up with ovarian hyperstimulation syndrome, quite seriously too.
So anyway, I just keep reading, looking for ideas. Below is the research I've found recently. It has been helpful for me as a patient, as there are things in my medical history I hadn't thought to mention that actually might be relevant for my upcoming endocrinology appointment. (I will be posting the agenda for that doctor visit including my history, if anyone is interested in playing along at home. Also there are 2 posts coming up on my experiences with Cushings.)
The main point of the research is, if you have PCOS, be sure you are screened for Cushings because it is CURABLE. It's rare still and we all still probably have PCOS, but Good Lord, ladies a few of us could be CURED. It's worth the effort to get the lab work done.
(And actually I ran across a few studies talking about how Cushings is more common in Diabetes than previously thought. Looks like quite a few people should be screened.)
Here's the research. Links are provided to the source below each quote.
"With an estimated prevalence of 79 cases per 100,000 persons, subclinical Cushing's syndrome is much more common than classic Cushing's syndrome. Depending on the amounts of glucocorticoids secreted by the tumor, the clinical spectrum ranges from slightly attenuated diurnal cortisol rhythm to complete atrophy of the contralateral adrenal gland with lasting adrenal insufficiency after unilateral adrenalectomy. Patients with subclinical Cushing's syndrome lack the classical stigmata of hypercortisolism but have a high prevalence of obesity, hypertension, and type 2 diabetes."
Source
"In conclusion, we definitely need studies in putative high-risk patients for SCS such as women with PCOS." I can't find much other than this tid bit that says PCOS is a risk for SCS.
Source
"Recent studies, however, have reported increasing evidence that subtle cortisol production and abnormalities in the hypothalamic-pituitary-adrenal (HPA) axis are more frequent than previously thought.
In conclusion, an unexpectedly high prevalence of subtle autonomous cortisol secretion, associated with high occurrence of hypertension, diabetes mellitus, elevated lipids, and diffuse obesity, was found in incidentally discovered adrenal adenomas. Although the pathological entity of a subclinical hypercortisolism state remained mostly stable in time during follow-up, hypertension, metabolic disorders, and hormonal abnormalities improved in all patients treated by adrenalectomy. These findings support the hypothesis that clinically silent hypercortisolism is probably not completely asymptomatic."
Source
And here's the mother lode...other patients with PCOS who actually had Cushings.
"Clinical and/or biochemical hyperandrogenism with menstrual infrequency is found commonly in women with Cushing's syndrome. In fact, there are data to suggest that menstrual irregularity is linked to the level of glucocorticoid excess rather than to androgen levels.[7] Ovarian cysts are certainly not discriminatory; they are present in almost half of women with Cushing's syndrome.[12] It is also noteworthy that cysts, in isolation, do not predict the development of PCOS;
...the overlap between syndromes is large and, thus, screening tests are needed to exclude Cushing's syndrome .
Most importantly, all definitions of PCOS require the exclusion of other causes of hyperandrogenism; failure to do so increases the potential for misdiagnosis.[1,7] Although the present case illustrates this risk on its own, we know of three other cases in which an original diagnosis of PCOS became revised to that of Cushing's syndrome ( Table 1 ). Upon curative treatment, all symptoms, originally attributed to PCOS, resolved. The diagnosis, treatment and management of Cushing's syndrome have been the subject of recent discussion in this journal.[4] Here, we address the importance of correctly distinguishing Cushing's syndrome from PCOS to minimize the risk of misdiagnosis."
Source
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