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Re: Adding the evaluation of Cushing's to the schema for PA. Seems like it should be added esp if there is an adrenal bump. or bumps.

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Sounds like a good idea, thank-you.

Did you pick UFC because you were recommending 24hr urine test and it could be

incorporated into it? I suggest late-night salivary might be a good alternative

and more accurate but don't know the cost.

>

> As our discussions of cortisol production have been stimulated by the

> NIH experience I did a lit search and just found

>

> http://www.jabfm.org/content/25/2/199.full.pdf+html

>

> This article on subclinical Cushing's suggests that we need to add the

> screening for CS to all with an adrenal adenoma or any suggestion of

> Cushig's: HTN,obesity, glucose intolearance etc etc.

>

> In other words everyone with HTN should be screened.

>

> So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> urinary free cortisol testing-which have have done in many but never

> found (or at last recognized) a subclinical Cushing's. These authors

> suggest that a UFC at the upper limit of normal should have further

> testing for Cushing's. Again I have never seen this in at least 100

> pts with Conn's I have tested over the years. But did not have ACTH

> levels then.

>

> It seems like we should also add a plasma cortisol and ACTH to the

> blood testing on the aldo day.

>

> They do not suggest doing a P aldo or a renin in every suspected

> Cushing's but I just sent them an email adding this to their schema if

> the BP is above 120/80.

>

> If one looks at the evolution of PA the evolution of adrenal Cushing's

> would be similar using urinary cortisol as the illustrative plot for

> urine changes in cortisol and the stages of Cushings would be the same

> as I have for Conn's but the instead of renin going down we would be

> seeing ACTH going down and obesity/glucose intolerance increasing over

> time.

>

> More later.

>

> CE Grim MD

>

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Does this change your recommended MCB if CS comes back positive or is untested?

NIH was very clear that Spironolactone was the wrong medicine for me because of

the way it affected cortisol. (CYP11B2/CYP11B1) I believe they started Maggie

on Eplerenone.

>

> As our discussions of cortisol production have been stimulated by the

> NIH experience I did a lit search and just found

>

> http://www.jabfm.org/content/25/2/199.full.pdf+html

>

> This article on subclinical Cushing's suggests that we need to add the

> screening for CS to all with an adrenal adenoma or any suggestion of

> Cushig's: HTN,obesity, glucose intolearance etc etc.

>

> In other words everyone with HTN should be screened.

>

> So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> urinary free cortisol testing-which have have done in many but never

> found (or at last recognized) a subclinical Cushing's. These authors

> suggest that a UFC at the upper limit of normal should have further

> testing for Cushing's. Again I have never seen this in at least 100

> pts with Conn's I have tested over the years. But did not have ACTH

> levels then.

>

> It seems like we should also add a plasma cortisol and ACTH to the

> blood testing on the aldo day.

>

> They do not suggest doing a P aldo or a renin in every suspected

> Cushing's but I just sent them an email adding this to their schema if

> the BP is above 120/80.

>

> If one looks at the evolution of PA the evolution of adrenal Cushing's

> would be similar using urinary cortisol as the illustrative plot for

> urine changes in cortisol and the stages of Cushings would be the same

> as I have for Conn's but the instead of renin going down we would be

> seeing ACTH going down and obesity/glucose intolerance increasing over

> time.

>

> More later.

>

> CE Grim MD

>

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Guest guest

didn't the VA do a 24 hr urine cortisol on you?

> >

> > As our discussions of cortisol production have been stimulated by the

> > NIH experience I did a lit search and just found

> >

> > http://www.jabfm.org/content/25/2/199.full.pdf+html

> >

> > This article on subclinical Cushing's suggests that we need to add the

> > screening for CS to all with an adrenal adenoma or any suggestion of

> > Cushig's: HTN,obesity, glucose intolearance etc etc.

> >

> > In other words everyone with HTN should be screened.

> >

> > So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> > urinary free cortisol testing-which have have done in many but never

> > found (or at last recognized) a subclinical Cushing's. These authors

> > suggest that a UFC at the upper limit of normal should have further

> > testing for Cushing's. Again I have never seen this in at least 100

> > pts with Conn's I have tested over the years. But did not have ACTH

> > levels then.

> >

> > It seems like we should also add a plasma cortisol and ACTH to the

> > blood testing on the aldo day.

> >

> > They do not suggest doing a P aldo or a renin in every suspected

> > Cushing's but I just sent them an email adding this to their schema if

> > the BP is above 120/80.

> >

> > If one looks at the evolution of PA the evolution of adrenal Cushing's

> > would be similar using urinary cortisol as the illustrative plot for

> > urine changes in cortisol and the stages of Cushings would be the same

> > as I have for Conn's but the instead of renin going down we would be

> > seeing ACTH going down and obesity/glucose intolerance increasing over

> > time.

> >

> > More later.

> >

> > CE Grim MD

> >

>

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Not that I remember but I'll go back and look when time permits.

> > >

> > > As our discussions of cortisol production have been stimulated by the

> > > NIH experience I did a lit search and just found

> > >

> > > http://www.jabfm.org/content/25/2/199.full.pdf+html

> > >

> > > This article on subclinical Cushing's suggests that we need to add the

> > > screening for CS to all with an adrenal adenoma or any suggestion of

> > > Cushig's: HTN,obesity, glucose intolearance etc etc.

> > >

> > > In other words everyone with HTN should be screened.

> > >

> > > So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> > > urinary free cortisol testing-which have have done in many but never

> > > found (or at last recognized) a subclinical Cushing's. These authors

> > > suggest that a UFC at the upper limit of normal should have further

> > > testing for Cushing's. Again I have never seen this in at least 100

> > > pts with Conn's I have tested over the years. But did not have ACTH

> > > levels then.

> > >

> > > It seems like we should also add a plasma cortisol and ACTH to the

> > > blood testing on the aldo day.

> > >

> > > They do not suggest doing a P aldo or a renin in every suspected

> > > Cushing's but I just sent them an email adding this to their schema if

> > > the BP is above 120/80.

> > >

> > > If one looks at the evolution of PA the evolution of adrenal Cushing's

> > > would be similar using urinary cortisol as the illustrative plot for

> > > urine changes in cortisol and the stages of Cushings would be the same

> > > as I have for Conn's but the instead of renin going down we would be

> > > seeing ACTH going down and obesity/glucose intolerance increasing over

> > > time.

> > >

> > > More later.

> > >

> > > CE Grim MD

> > >

> >

>

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That is interesting. Given this topic, I was curious if anyone had these tests

done and if it is anything to consider possibly diagnostic. Given that my

Saline test showed suppresible aldosterone and that my aldosterone was not above

15 to begin with, my endo did some other tests to see if she could find any

other problems with my adrenals. It appears she was looking at congenital

adrenal hyperplasia, but as I read about it, I am not sure that it would fit me

as I am not a kid and did not have problems as a child.

Anyway this was testing done fasting at 8am.

DHEA-S 93.3 ug/dl (35-430)Normal

Testosterone total 50.3 ng/dl (20-80)normal

Testosterone free <.15 pg/dl(.04-2.03) normal

11 deoxycortisol 99 ng/dl (<=62) HIGH

deoxycorticosterone- see attached report but did not get a report.

17-Hydroporgesterone- 53 ng/dl (<=285)normal

Andristenedione- 202 ng/dl (47-268) normal

My cortisol level was not checked at that time. It was checked at the time of

saline infusion (done in February) and it was 10.6 ug/dl at 8am.

I do not get to see the endo again until July and doubt I will here from her

until then so just trying to figure out what this might mean and if she should

do any further testing. I do not have any sex characteristic changes and

menstral cycle is normal for 41 yr old women. Below is review of what has gone

on so far with me.

Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low

Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP,

3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d

and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700

with supplementation (feel better, but not myself). sx started 3 years ago:

brain fog, fatigue, pain in joints and muscles, exercise intolerence, light

headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia

and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile.

>

> As our discussions of cortisol production have been stimulated by the

> NIH experience I did a lit search and just found

>

> http://www.jabfm.org/content/25/2/199.full.pdf+html

>

> This article on subclinical Cushing's suggests that we need to add the

> screening for CS to all with an adrenal adenoma or any suggestion of

> Cushig's: HTN,obesity, glucose intolearance etc etc.

>

> In other words everyone with HTN should be screened.

>

> So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> urinary free cortisol testing-which have have done in many but never

> found (or at last recognized) a subclinical Cushing's. These authors

> suggest that a UFC at the upper limit of normal should have further

> testing for Cushing's. Again I have never seen this in at least 100

> pts with Conn's I have tested over the years. But did not have ACTH

> levels then.

>

> It seems like we should also add a plasma cortisol and ACTH to the

> blood testing on the aldo day.

>

> They do not suggest doing a P aldo or a renin in every suspected

> Cushing's but I just sent them an email adding this to their schema if

> the BP is above 120/80.

>

> If one looks at the evolution of PA the evolution of adrenal Cushing's

> would be similar using urinary cortisol as the illustrative plot for

> urine changes in cortisol and the stages of Cushings would be the same

> as I have for Conn's but the instead of renin going down we would be

> seeing ACTH going down and obesity/glucose intolerance increasing over

> time.

>

> More later.

>

> CE Grim MD

>

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I decided I'd better go back and look before I forgot. You are right, Dr. Trask

did one on Jan. 14,2011.

Results: CORTISOL.FREE 26.3 range 4.0 - 50.0 volume = 2600 ml

Looks like there is a question for Dr. Moraitis, Thanks!

> > >

> > > As our discussions of cortisol production have been stimulated by the

> > > NIH experience I did a lit search and just found

> > >

> > > http://www.jabfm.org/content/25/2/199.full.pdf+html

> > >

> > > This article on subclinical Cushing's suggests that we need to add the

> > > screening for CS to all with an adrenal adenoma or any suggestion of

> > > Cushig's: HTN,obesity, glucose intolearance etc etc.

> > >

> > > In other words everyone with HTN should be screened.

> > >

> > > So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> > > urinary free cortisol testing-which have have done in many but never

> > > found (or at last recognized) a subclinical Cushing's. These authors

> > > suggest that a UFC at the upper limit of normal should have further

> > > testing for Cushing's. Again I have never seen this in at least 100

> > > pts with Conn's I have tested over the years. But did not have ACTH

> > > levels then.

> > >

> > > It seems like we should also add a plasma cortisol and ACTH to the

> > > blood testing on the aldo day.

> > >

> > > They do not suggest doing a P aldo or a renin in every suspected

> > > Cushing's but I just sent them an email adding this to their schema if

> > > the BP is above 120/80.

> > >

> > > If one looks at the evolution of PA the evolution of adrenal Cushing's

> > > would be similar using urinary cortisol as the illustrative plot for

> > > urine changes in cortisol and the stages of Cushings would be the same

> > > as I have for Conn's but the instead of renin going down we would be

> > > seeing ACTH going down and obesity/glucose intolerance increasing over

> > > time.

> > >

> > > More later.

> > >

> > > CE Grim MD

> > >

> >

>

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, with this " 11 deoxycortisol 99 ng/dl (<=62) HIGH " I would suggest it

would be worth further checking for cushing's or " masked cushing " . Dr.

Stratakis at NIH (protocol 00-CH-0160) could give you some ideas I would think.

Actually I just looked back and with an ARR of 27 you might have PA masking

excess cortisol - CALL HIM:

http://clinicalstudies.info.nih.gov/detail/A_2000-CH-0160.html

What's this? " High PTH, high bone ALK phos, need high doses of vit d and

Magnesium to stay in normal range " Did she check calcium? NIH was surprised my

bone density test was so good (they said excess estrogen and I added 3 glasses

of milk/day for 64 years and 1 year of " momma's milk " !) They did put me on

8-weeks of vit-B suppl and will test again.

> >

> > As our discussions of cortisol production have been stimulated by the

> > NIH experience I did a lit search and just found

> >

> > http://www.jabfm.org/content/25/2/199.full.pdf+html

> >

> > This article on subclinical Cushing's suggests that we need to add the

> > screening for CS to all with an adrenal adenoma or any suggestion of

> > Cushig's: HTN,obesity, glucose intolearance etc etc.

> >

> > In other words everyone with HTN should be screened.

> >

> > So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> > urinary free cortisol testing-which have have done in many but never

> > found (or at last recognized) a subclinical Cushing's. These authors

> > suggest that a UFC at the upper limit of normal should have further

> > testing for Cushing's. Again I have never seen this in at least 100

> > pts with Conn's I have tested over the years. But did not have ACTH

> > levels then.

> >

> > It seems like we should also add a plasma cortisol and ACTH to the

> > blood testing on the aldo day.

> >

> > They do not suggest doing a P aldo or a renin in every suspected

> > Cushing's but I just sent them an email adding this to their schema if

> > the BP is above 120/80.

> >

> > If one looks at the evolution of PA the evolution of adrenal Cushing's

> > would be similar using urinary cortisol as the illustrative plot for

> > urine changes in cortisol and the stages of Cushings would be the same

> > as I have for Conn's but the instead of renin going down we would be

> > seeing ACTH going down and obesity/glucose intolerance increasing over

> > time.

> >

> > More later.

> >

> > CE Grim MD

> >

>

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, originally I had high parathyroid hormone and normal calcium. They

corrected my Vit d and PTH was still high. Bone markers show increased bone

turnover but my bone density was good. Now PTH is going down and so they can

not explain what is going on. I was on Vit B but it got too high so I stopped

taking it. Has not been retested.

Tanks for your input on the other. I was hoping to not go to NIH. Got 5 kids

and it would be hard, but may not have anyone here that can sort this out.

Stacey

> > >

> > > As our discussions of cortisol production have been stimulated by the

> > > NIH experience I did a lit search and just found

> > >

> > > http://www.jabfm.org/content/25/2/199.full.pdf+html

> > >

> > > This article on subclinical Cushing's suggests that we need to add the

> > > screening for CS to all with an adrenal adenoma or any suggestion of

> > > Cushig's: HTN,obesity, glucose intolearance etc etc.

> > >

> > > In other words everyone with HTN should be screened.

> > >

> > > So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> > > urinary free cortisol testing-which have have done in many but never

> > > found (or at last recognized) a subclinical Cushing's. These authors

> > > suggest that a UFC at the upper limit of normal should have further

> > > testing for Cushing's. Again I have never seen this in at least 100

> > > pts with Conn's I have tested over the years. But did not have ACTH

> > > levels then.

> > >

> > > It seems like we should also add a plasma cortisol and ACTH to the

> > > blood testing on the aldo day.

> > >

> > > They do not suggest doing a P aldo or a renin in every suspected

> > > Cushing's but I just sent them an email adding this to their schema if

> > > the BP is above 120/80.

> > >

> > > If one looks at the evolution of PA the evolution of adrenal Cushing's

> > > would be similar using urinary cortisol as the illustrative plot for

> > > urine changes in cortisol and the stages of Cushings would be the same

> > > as I have for Conn's but the instead of renin going down we would be

> > > seeing ACTH going down and obesity/glucose intolerance increasing over

> > > time.

> > >

> > > More later.

> > >

> > > CE Grim MD

> > >

> >

>

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, not sure you would have to go to Bethesda. They may have suggestions or

may be working with someone closer to you, where are you located?

How old are the kids? I take " fresh air kids " but teenagers scare me!

> > > >

> > > > As our discussions of cortisol production have been stimulated by the

> > > > NIH experience I did a lit search and just found

> > > >

> > > > http://www.jabfm.org/content/25/2/199.full.pdf+html

> > > >

> > > > This article on subclinical Cushing's suggests that we need to add the

> > > > screening for CS to all with an adrenal adenoma or any suggestion of

> > > > Cushig's: HTN,obesity, glucose intolearance etc etc.

> > > >

> > > > In other words everyone with HTN should be screened.

> > > >

> > > > So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> > > > urinary free cortisol testing-which have have done in many but never

> > > > found (or at last recognized) a subclinical Cushing's. These authors

> > > > suggest that a UFC at the upper limit of normal should have further

> > > > testing for Cushing's. Again I have never seen this in at least 100

> > > > pts with Conn's I have tested over the years. But did not have ACTH

> > > > levels then.

> > > >

> > > > It seems like we should also add a plasma cortisol and ACTH to the

> > > > blood testing on the aldo day.

> > > >

> > > > They do not suggest doing a P aldo or a renin in every suspected

> > > > Cushing's but I just sent them an email adding this to their schema if

> > > > the BP is above 120/80.

> > > >

> > > > If one looks at the evolution of PA the evolution of adrenal Cushing's

> > > > would be similar using urinary cortisol as the illustrative plot for

> > > > urine changes in cortisol and the stages of Cushings would be the same

> > > > as I have for Conn's but the instead of renin going down we would be

> > > > seeing ACTH going down and obesity/glucose intolerance increasing over

> > > > time.

> > > >

> > > > More later.

> > > >

> > > > CE Grim MD

> > > >

> > >

> >

>

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Guest guest

24 HR urine can only give total cortisol. I would think it would be important to

know what your cycle is as well.

> > > >

> > > > As our discussions of cortisol production have been stimulated by the

> > > > NIH experience I did a lit search and just found

> > > >

> > > > http://www.jabfm.org/content/25/2/199.full.pdf+html

> > > >

> > > > This article on subclinical Cushing's suggests that we need to add the

> > > > screening for CS to all with an adrenal adenoma or any suggestion of

> > > > Cushig's: HTN,obesity, glucose intolearance etc etc.

> > > >

> > > > In other words everyone with HTN should be screened.

> > > >

> > > > So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> > > > urinary free cortisol testing-which have have done in many but never

> > > > found (or at last recognized) a subclinical Cushing's. These authors

> > > > suggest that a UFC at the upper limit of normal should have further

> > > > testing for Cushing's. Again I have never seen this in at least 100

> > > > pts with Conn's I have tested over the years. But did not have ACTH

> > > > levels then.

> > > >

> > > > It seems like we should also add a plasma cortisol and ACTH to the

> > > > blood testing on the aldo day.

> > > >

> > > > They do not suggest doing a P aldo or a renin in every suspected

> > > > Cushing's but I just sent them an email adding this to their schema if

> > > > the BP is above 120/80.

> > > >

> > > > If one looks at the evolution of PA the evolution of adrenal Cushing's

> > > > would be similar using urinary cortisol as the illustrative plot for

> > > > urine changes in cortisol and the stages of Cushings would be the same

> > > > as I have for Conn's but the instead of renin going down we would be

> > > > seeing ACTH going down and obesity/glucose intolerance increasing over

> > > > time.

> > > >

> > > > More later.

> > > >

> > > > CE Grim MD

> > > >

> > >

> >

>

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Guest guest

Well Dr. Grim, so much for that idea. I sent Dr. Moraitis a message and here is his answer followed by my question:

In adrenal Cushing's, urine free cortisol is usually normal. It 's elevated only in the advanced cases.

Will touch base with you on Friday to discuss the final plan

Have a good day

Dr Moraitis

On Mon, Apr 30, 2012 at 10:49 AM, <jclark24p@...> wrote:

So, I hope you are done goofing off and ready to go back to work! (No rush, I have all DAY! )

I was looking through some of my prior tests from the VA this morning and found a 24hr urine test done on Jan. 14, 2011:

CORTISOL FREE = 26.3, range 4.0-50.0 VOLUME = 2600 ML

Does this shed any light on the "masked cortisol"? (I'm not sure if that indicates it appeared in the last 15 months or not, but you're the doctor!)

Regards and Thanks....

>> As our discussions of cortisol production have been stimulated by the > NIH experience I did a lit search and just found> > http://www.jabfm.org/content/25/2/199.full.pdf+html> > This article on subclinical Cushing's suggests that we need to add the > screening for CS to all with an adrenal adenoma or any suggestion of > Cushig's: HTN,obesity, glucose intolearance etc etc.> > In other words everyone with HTN should be screened.> > So in my protocol for easy diagnosis I am adding to the 24 hr urine a > urinary free cortisol testing-which have have done in many but never > found (or at last recognized) a subclinical Cushing's. These authors > suggest that a UFC at the upper limit of normal should have further > testing for Cushing's. Again I have never seen this in at least 100 > pts with Conn's I have tested over the years. But did not have ACTH > levels then.> > It seems like we should also add a plasma cortisol and ACTH to the > blood testing on the aldo day.> > They do not suggest doing a P aldo or a renin in every suspected > Cushing's but I just sent them an email adding this to their schema if > the BP is above 120/80.> > If one looks at the evolution of PA the evolution of adrenal Cushing's > would be similar using urinary cortisol as the illustrative plot for > urine changes in cortisol and the stages of Cushings would be the same > as I have for Conn's but the instead of renin going down we would be > seeing ACTH going down and obesity/glucose intolerance increasing over > time.> > More later.> > CE Grim MD>

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Guest guest

I am in Lansing, Mi so U of M is close but not in my insurance plan.

My kids are 14 to 5. So this doctor would answer your emails even if you are

not seeing him.

> > > > >

> > > > > As our discussions of cortisol production have been stimulated by the

> > > > > NIH experience I did a lit search and just found

> > > > >

> > > > > http://www.jabfm.org/content/25/2/199.full.pdf+html

> > > > >

> > > > > This article on subclinical Cushing's suggests that we need to add the

> > > > > screening for CS to all with an adrenal adenoma or any suggestion of

> > > > > Cushig's: HTN,obesity, glucose intolearance etc etc.

> > > > >

> > > > > In other words everyone with HTN should be screened.

> > > > >

> > > > > So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> > > > > urinary free cortisol testing-which have have done in many but never

> > > > > found (or at last recognized) a subclinical Cushing's. These authors

> > > > > suggest that a UFC at the upper limit of normal should have further

> > > > > testing for Cushing's. Again I have never seen this in at least 100

> > > > > pts with Conn's I have tested over the years. But did not have ACTH

> > > > > levels then.

> > > > >

> > > > > It seems like we should also add a plasma cortisol and ACTH to the

> > > > > blood testing on the aldo day.

> > > > >

> > > > > They do not suggest doing a P aldo or a renin in every suspected

> > > > > Cushing's but I just sent them an email adding this to their schema if

> > > > > the BP is above 120/80.

> > > > >

> > > > > If one looks at the evolution of PA the evolution of adrenal Cushing's

> > > > > would be similar using urinary cortisol as the illustrative plot for

> > > > > urine changes in cortisol and the stages of Cushings would be the same

> > > > > as I have for Conn's but the instead of renin going down we would be

> > > > > seeing ACTH going down and obesity/glucose intolerance increasing over

> > > > > time.

> > > > >

> > > > > More later.

> > > > >

> > > > > CE Grim MD

> > > > >

> > > >

> > >

> >

>

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Prob need more Spiro. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 30, 2012, at 9:23, StaceyF <ssminnow@...> wrote:

That is interesting. Given this topic, I was curious if anyone had these tests done and if it is anything to consider possibly diagnostic. Given that my Saline test showed suppresible aldosterone and that my aldosterone was not above 15 to begin with, my endo did some other tests to see if she could find any other problems with my adrenals. It appears she was looking at congenital adrenal hyperplasia, but as I read about it, I am not sure that it would fit me as I am not a kid and did not have problems as a child.

Anyway this was testing done fasting at 8am.

DHEA-S 93.3 ug/dl (35-430)Normal

Testosterone total 50.3 ng/dl (20-80)normal

Testosterone free <.15 pg/dl(.04-2.03) normal

11 deoxycortisol 99 ng/dl (<=62) HIGH

deoxycorticosterone- see attached report but did not get a report.

17-Hydroporgesterone- 53 ng/dl (<=285)normal

Andristenedione- 202 ng/dl (47-268) normal

My cortisol level was not checked at that time. It was checked at the time of saline infusion (done in February) and it was 10.6 ug/dl at 8am.

I do not get to see the endo again until July and doubt I will here from her until then so just trying to figure out what this might mean and if she should do any further testing. I do not have any sex characteristic changes and menstral cycle is normal for 41 yr old women. Below is review of what has gone on so far with me.

Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP,

3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile.

>

> As our discussions of cortisol production have been stimulated by the

> NIH experience I did a lit search and just found

>

> http://www.jabfm.org/content/25/2/199.full.pdf+html

>

> This article on subclinical Cushing's suggests that we need to add the

> screening for CS to all with an adrenal adenoma or any suggestion of

> Cushig's: HTN,obesity, glucose intolearance etc etc.

>

> In other words everyone with HTN should be screened.

>

> So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> urinary free cortisol testing-which have have done in many but never

> found (or at last recognized) a subclinical Cushing's. These authors

> suggest that a UFC at the upper limit of normal should have further

> testing for Cushing's. Again I have never seen this in at least 100

> pts with Conn's I have tested over the years. But did not have ACTH

> levels then.

>

> It seems like we should also add a plasma cortisol and ACTH to the

> blood testing on the aldo day.

>

> They do not suggest doing a P aldo or a renin in every suspected

> Cushing's but I just sent them an email adding this to their schema if

> the BP is above 120/80.

>

> If one looks at the evolution of PA the evolution of adrenal Cushing's

> would be similar using urinary cortisol as the illustrative plot for

> urine changes in cortisol and the stages of Cushings would be the same

> as I have for Conn's but the instead of renin going down we would be

> seeing ACTH going down and obesity/glucose intolerance increasing over

> time.

>

> More later.

>

> CE Grim MD

>

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Also ask how many x should it be checked to get a stable estimate and if there is any adjustment needed for age BMI and OSA. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 30, 2012, at 9:57, <jclark24p@...> wrote:

I decided I'd better go back and look before I forgot. You are right, Dr. Trask did one on Jan. 14,2011.

Results: CORTISOL.FREE 26.3 range 4.0 - 50.0 volume = 2600 ml

Looks like there is a question for Dr. Moraitis, Thanks!

> > >

> > > As our discussions of cortisol production have been stimulated by the

> > > NIH experience I did a lit search and just found

> > >

> > > http://www.jabfm.org/content/25/2/199.full.pdf+html

> > >

> > > This article on subclinical Cushing's suggests that we need to add the

> > > screening for CS to all with an adrenal adenoma or any suggestion of

> > > Cushig's: HTN,obesity, glucose intolearance etc etc.

> > >

> > > In other words everyone with HTN should be screened.

> > >

> > > So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> > > urinary free cortisol testing-which have have done in many but never

> > > found (or at last recognized) a subclinical Cushing's. These authors

> > > suggest that a UFC at the upper limit of normal should have further

> > > testing for Cushing's. Again I have never seen this in at least 100

> > > pts with Conn's I have tested over the years. But did not have ACTH

> > > levels then.

> > >

> > > It seems like we should also add a plasma cortisol and ACTH to the

> > > blood testing on the aldo day.

> > >

> > > They do not suggest doing a P aldo or a renin in every suspected

> > > Cushing's but I just sent them an email adding this to their schema if

> > > the BP is above 120/80.

> > >

> > > If one looks at the evolution of PA the evolution of adrenal Cushing's

> > > would be similar using urinary cortisol as the illustrative plot for

> > > urine changes in cortisol and the stages of Cushings would be the same

> > > as I have for Conn's but the instead of renin going down we would be

> > > seeing ACTH going down and obesity/glucose intolerance increasing over

> > > time.

> > >

> > > More later.

> > >

> > > CE Grim MD

> > >

> >

>

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Where do we read about the masking? In more detailMay your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 30, 2012, at 10:33, <jclark24p@...> wrote:

, with this "11 deoxycortisol 99 ng/dl (<=62) HIGH" I would suggest it would be worth further checking for cushing's or "masked cushing". Dr. Stratakis at NIH (protocol 00-CH-0160) could give you some ideas I would think. Actually I just looked back and with an ARR of 27 you might have PA masking excess cortisol - CALL HIM:

http://clinicalstudies.info.nih.gov/detail/A_2000-CH-0160.html

What's this? "High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range" Did she check calcium? NIH was surprised my bone density test was so good (they said excess estrogen and I added 3 glasses of milk/day for 64 years and 1 year of "momma's milk"!) They did put me on 8-weeks of vit-B suppl and will test again.

> >

> > As our discussions of cortisol production have been stimulated by the

> > NIH experience I did a lit search and just found

> >

> > http://www.jabfm.org/content/25/2/199.full.pdf+html

> >

> > This article on subclinical Cushing's suggests that we need to add the

> > screening for CS to all with an adrenal adenoma or any suggestion of

> > Cushig's: HTN,obesity, glucose intolearance etc etc.

> >

> > In other words everyone with HTN should be screened.

> >

> > So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> > urinary free cortisol testing-which have have done in many but never

> > found (or at last recognized) a subclinical Cushing's. These authors

> > suggest that a UFC at the upper limit of normal should have further

> > testing for Cushing's. Again I have never seen this in at least 100

> > pts with Conn's I have tested over the years. But did not have ACTH

> > levels then.

> >

> > It seems like we should also add a plasma cortisol and ACTH to the

> > blood testing on the aldo day.

> >

> > They do not suggest doing a P aldo or a renin in every suspected

> > Cushing's but I just sent them an email adding this to their schema if

> > the BP is above 120/80.

> >

> > If one looks at the evolution of PA the evolution of adrenal Cushing's

> > would be similar using urinary cortisol as the illustrative plot for

> > urine changes in cortisol and the stages of Cushings would be the same

> > as I have for Conn's but the instead of renin going down we would be

> > seeing ACTH going down and obesity/glucose intolerance increasing over

> > time.

> >

> > More later.

> >

> > CE Grim MD

> >

>

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Recall that excess also affects Ca and therefore PTH. SOME papers in our files. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 30, 2012, at 10:41, StaceyF <ssminnow@...> wrote:

, originally I had high parathyroid hormone and normal calcium. They corrected my Vit d and PTH was still high. Bone markers show increased bone turnover but my bone density was good. Now PTH is going down and so they can not explain what is going on. I was on Vit B but it got too high so I stopped taking it. Has not been retested.

Tanks for your input on the other. I was hoping to not go to NIH. Got 5 kids and it would be hard, but may not have anyone here that can sort this out.

Stacey

> > >

> > > As our discussions of cortisol production have been stimulated by the

> > > NIH experience I did a lit search and just found

> > >

> > > http://www.jabfm.org/content/25/2/199.full.pdf+html

> > >

> > > This article on subclinical Cushing's suggests that we need to add the

> > > screening for CS to all with an adrenal adenoma or any suggestion of

> > > Cushig's: HTN,obesity, glucose intolearance etc etc.

> > >

> > > In other words everyone with HTN should be screened.

> > >

> > > So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> > > urinary free cortisol testing-which have have done in many but never

> > > found (or at last recognized) a subclinical Cushing's. These authors

> > > suggest that a UFC at the upper limit of normal should have further

> > > testing for Cushing's. Again I have never seen this in at least 100

> > > pts with Conn's I have tested over the years. But did not have ACTH

> > > levels then.

> > >

> > > It seems like we should also add a plasma cortisol and ACTH to the

> > > blood testing on the aldo day.

> > >

> > > They do not suggest doing a P aldo or a renin in every suspected

> > > Cushing's but I just sent them an email adding this to their schema if

> > > the BP is above 120/80.

> > >

> > > If one looks at the evolution of PA the evolution of adrenal Cushing's

> > > would be similar using urinary cortisol as the illustrative plot for

> > > urine changes in cortisol and the stages of Cushings would be the same

> > > as I have for Conn's but the instead of renin going down we would be

> > > seeing ACTH going down and obesity/glucose intolerance increasing over

> > > time.

> > >

> > > More later.

> > >

> > > CE Grim MD

> > >

> >

>

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I would recommend U OF. M that is where Conn was from and several here have had good experiences. Try to see dr roger Greckin. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 30, 2012, at 12:18, StaceyF <ssminnow@...> wrote:

I am in Lansing, Mi so U of M is close but not in my insurance plan.

My kids are 14 to 5. So this doctor would answer your emails even if you are not seeing him.

> > > > >

> > > > > As our discussions of cortisol production have been stimulated by the

> > > > > NIH experience I did a lit search and just found

> > > > >

> > > > > http://www.jabfm.org/content/25/2/199.full.pdf+html

> > > > >

> > > > > This article on subclinical Cushing's suggests that we need to add the

> > > > > screening for CS to all with an adrenal adenoma or any suggestion of

> > > > > Cushig's: HTN,obesity, glucose intolearance etc etc.

> > > > >

> > > > > In other words everyone with HTN should be screened.

> > > > >

> > > > > So in my protocol for easy diagnosis I am adding to the 24 hr urine a

> > > > > urinary free cortisol testing-which have have done in many but never

> > > > > found (or at last recognized) a subclinical Cushing's. These authors

> > > > > suggest that a UFC at the upper limit of normal should have further

> > > > > testing for Cushing's. Again I have never seen this in at least 100

> > > > > pts with Conn's I have tested over the years. But did not have ACTH

> > > > > levels then.

> > > > >

> > > > > It seems like we should also add a plasma cortisol and ACTH to the

> > > > > blood testing on the aldo day.

> > > > >

> > > > > They do not suggest doing a P aldo or a renin in every suspected

> > > > > Cushing's but I just sent them an email adding this to their schema if

> > > > > the BP is above 120/80.

> > > > >

> > > > > If one looks at the evolution of PA the evolution of adrenal Cushing's

> > > > > would be similar using urinary cortisol as the illustrative plot for

> > > > > urine changes in cortisol and the stages of Cushings would be the same

> > > > > as I have for Conn's but the instead of renin going down we would be

> > > > > seeing ACTH going down and obesity/glucose intolerance increasing over

> > > > > time.

> > > > >

> > > > > More later.

> > > > >

> > > > > CE Grim MD

> > > > >

> > > >

> > >

> >

>

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Sounds like the same Grim concept of stages of evolution of adrenal disease. Huh? May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 30, 2012, at 12:12, <jclark24p@...> wrote:

Well Dr. Grim, so much for that idea. I sent Dr. Moraitis a message and here is his answer followed by my question:

In adrenal Cushing's, urine free cortisol is usually normal. It 's elevated only in the advanced cases.

Will touch base with you on Friday to discuss the final plan

Have a good day

Dr Moraitis

On Mon, Apr 30, 2012 at 10:49 AM, <jclark24p@...> wrote:

So, I hope you are done goofing off and ready to go back to work! (No rush, I have all DAY! )

I was looking through some of my prior tests from the VA this morning and found a 24hr urine test done on Jan. 14, 2011:

CORTISOL FREE = 26.3, range 4.0-50.0 VOLUME = 2600 ML

Does this shed any light on the "masked cortisol"? (I'm not sure if that indicates it appeared in the last 15 months or not, but you're the doctor!)

Regards and Thanks....

>> As our discussions of cortisol production have been stimulated by the > NIH experience I did a lit search and just found> > http://www.jabfm.org/content/25/2/199.full.pdf+html> > This article on subclinical Cushing's suggests that we need to add the > screening for CS to all with an adrenal adenoma or any suggestion of > Cushig's: HTN,obesity, glucose intolearance etc etc.> > In other words everyone with HTN should be screened.> > So in my protocol for easy diagnosis I am adding to the 24 hr urine a > urinary free cortisol testing-which have have done in many but never > found (or at last recognized) a subclinical Cushing's. These authors > suggest that a UFC at the upper limit of normal should have further > testing for Cushing's. Again I have never seen this in at least

100 > pts with Conn's I have tested over the years. But did not have ACTH > levels then.> > It seems like we should also add a plasma cortisol and ACTH to the > blood testing on the aldo day.> > They do not suggest doing a P aldo or a renin in every suspected > Cushing's but I just sent them an email adding this to their schema if > the BP is above 120/80.> > If one looks at the evolution of PA the evolution of adrenal Cushing's > would be similar using urinary cortisol as the illustrative plot for > urine changes in cortisol and the stages of Cushings would be the same > as I have for Conn's but the instead of renin going down we would be > seeing ACTH going down and obesity/glucose intolerance increasing over > time.> > More later.> > CE Grim MD>

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Yeap, Dr. Grim!! Kudos to you in seeing the similarities between these sister

diseases (btw you've been doing this for, what 40y ..?)!

But good luck to any PT comunicating with their young unexperienced endo about

doing PA and Cushing's testing in parallel.

I have tried, they say PA is very rare, Cushing's more so and they only go for

the $$$$ making procedures not a simple 24h UFC for diagnosys. And I have also

tried to convince my endo to do a saliva cortisol sampled 3-4 times/day to see

the diurnal cortisol cycle, they would not do-it, NOT DONE HERE, blah-blah, we

would have to order the saliva cortisol kits from the lab blah-blah and this was

a research oriented institution (University of California).

I've ended up doing couple of 24h UFC and one was wayyyy out of range (like 50%

higher then the upper limit).

You know what they said? This is OK, you were probably stressed, blah-blah, you

don't have the other signs of Cushing's (btw like that paper pointed out this is

SUBCLINICAL adrenal Cushing's).

So it will take much longer until the PA and Cushing's will get their correct

diagnosis workup unless you are working with Dr. Grim or the NIH doctors which

truly understand test results and interpret clinical signs correctly.

>

> > Well Dr. Grim, so much for that idea. I sent Dr. Moraitis a message and

here is his answer followed by my question:

> >

> > In adrenal Cushing's, urine free cortisol is usually normal. It 's elevated

only in the advanced cases.

> > Will touch base with you on Friday to discuss the final plan

> > Have a good day

> > Dr Moraitis

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Hi Dr. Grim,

Could that be " Subclinical Cushing's " == " Cyclical Cushing's " ?

One could have Cyclical Cushing and be subclinical at the time of evaluation

because cortisol cycle is bottoming out.

There isn't much out there about cyclical Cushing's ....

Your comments appreciated.

tiu

>

> As our discussions of cortisol production have been stimulated by

> the NIH experience I did a lit search and just found

>

> http://www.jabfm.org/content/25/2/199.full.pdf+html

>

> This article on subclinical Cushing's suggests that we need to add

> the screening for CS to all with an adrenal adenoma or any

> suggestion of Cushig's: HTN,obesity, glucose intolearance etc etc.

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I agree. That is where I am at, deciding if I am chasing a diagnosis that I

likely do not have because I want answers to how bad I feel or that there is

something truly there and I just need to get to some competent drs. who can sort

out the labs as you said. I have spent so much money and 3 years chasing labs

and seen so many 4 endo's already, one from U of M and have gotten no answers.

This latest one is young and has never seen PA but had at least the willingness

to look up what may need to be checked. But can she put it together.

I did not see Dr. Grekin at U of M and I have read about him and he sounds

competent. I am sure it will take months to get into him. Better than sitting

here waiting for nothing. Maybe NIH would be better, get it done and over with

instead of testing that takes years.

> >

> > > Well Dr. Grim, so much for that idea. I sent Dr. Moraitis a message and

here is his answer followed by my question:

> > >

> > > In adrenal Cushing's, urine free cortisol is usually normal. It 's

elevated only in the advanced cases.

> > > Will touch base with you on Friday to discuss the final plan

> > > Have a good day

> > > Dr Moraitis

>

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, this is all very interesting. I salute your research skills. I went to a U of CO endo in 2006. She was convinced that I had Cushings and said she'd dig until she got to the bottom of what was wrong with me. Cushing's tests didn't pan out as the urinary value always came in the high-normal range. Once she couldn't prove Cushing's, she lost interest. I went on my (un)merry way with BP = ~180/100. My ARR ranged from 21 - 35. I ought to go back and find those tests and see where urinary sodium was, assuming she even did it. I remember ACTH being off but don't remember whether it was high or low. Dopamine was low. I had a totally normal ACTH-stim test and after the injection of ACTH, I felt more calm than I had in years. That didn't pique any interest and of course, it didn't last. In 1999, I had high PTH and high calcium and had a parathyroidectomy. I'd had the high calcium for 14 years and my bones were trashed. That's why I say they will pry my estrogen out of my cold, dead hands. I have since had saliva cortisol tests and they have been sky-high but gradually falling as I've progressed with Lyme treatment. The rhythm is good but results are 3 - 4 x normal. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of , with this " 11 deoxycortisol 99 ng/dl (<=62) HIGH " I would suggest it would be worth further checking for cushing's or " masked cushing " . Dr. Stratakis at NIH (protocol 00-CH-0160) could give you some ideas I would think. Actually I just looked back and with an ARR of 27 you might have PA masking excess cortisol - CALL HIM:http://clinicalstudies.info.nih.gov/detail/A_2000-CH-0160.htmlWhat's this? " High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range " Did she check calcium? NIH was surprised my bone density test was so good (they said excess estrogen and I added 3 glasses of milk/day for 64 years and 1 year of " momma's milk " !) They did put me on 8-weeks of vit-B suppl and will test again. .

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Thanks for the salute but I had some good hints from NIH! (A couple nurses were

very helpful in the wee hours of the night, especially Jill - a traveling nurse

who is no longer there but knew about cushing's!)

>

> , this is all very interesting. I salute your research skills.

>

>

>

> I went to a U of CO endo in 2006. She was convinced that I had Cushings and

> said she'd dig until she got to the bottom of what was wrong with me.

> Cushing's tests didn't pan out as the urinary value always came in the

> high-normal range. Once she couldn't prove Cushing's, she lost interest. I

> went on my (un)merry way with BP = ~180/100. My ARR ranged from 21 - 35. I

> ought to go back and find those tests and see where urinary sodium was,

> assuming she even did it. I remember ACTH being off but don't remember

> whether it was high or low. Dopamine was low. I had a totally normal

> ACTH-stim test and after the injection of ACTH, I felt more calm than I had

> in years. That didn't pique any interest and of course, it didn't last.

> In 1999, I had high PTH and high calcium and had a parathyroidectomy. I'd

> had the high calcium for 14 years and my bones were trashed. That's why I

> say they will pry my estrogen out of my cold, dead hands.

>

>

>

> I have since had saliva cortisol tests and they have been sky-high but

> gradually falling as I've progressed with Lyme treatment. The rhythm is

> good but results are 3 - 4 x normal.

>

>

>

> Val

>

>

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of

>

> , with this " 11 deoxycortisol 99 ng/dl (<=62) HIGH " I would suggest it

> would be worth further checking for cushing's or " masked cushing " . Dr.

> Stratakis at NIH (protocol 00-CH-0160) could give you some ideas I would

> think. Actually I just looked back and with an ARR of 27 you might have PA

> masking excess cortisol - CALL HIM:

>

> http://clinicalstudies.info.nih.gov/detail/A_2000-CH-0160.html

>

> What's this? " High PTH, high bone ALK phos, need high doses of vit d and

> Magnesium to stay in normal range " Did she check calcium? NIH was surprised

> my bone density test was so good (they said excess estrogen and I added 3

> glasses of milk/day for 64 years and 1 year of " momma's milk " !) They did put

> me on 8-weeks of vit-B suppl and will test again.

>

>

>

> .

>

> http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId=

> 42780/stime=1335796399/nc1=3848641/nc2=5191945/nc3=5191951

>

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But if we are getting a 24 hr urine for Na, K and aldo and creat anyway seems we should always add cortisol and cats. They we are done.We did this for 10 years in Indy and as I recall never picked up a Cushing's well at least an advanced on that was not clinically obvious on PE. And only 1 pheo but as pheo is often fatal then some argue that it should be screened for in every HTN. I always do it in the difficult resistant cases. Again over 45 years only picked up one that was not already Dxed when sent to us based on labs the local practitioner had already done before sending to us.On Apr 30, 2012, at 6:10 AM, wrote: Sounds like a good idea, thank-you. Did you pick UFC because you were recommending 24hr urine test and it could be incorporated into it? I suggest late-night salivary might be a good alternative and more accurate but don't know the cost. > > As our discussions of cortisol production have been stimulated by the > NIH experience I did a lit search and just found > > http://www.jabfm.org/content/25/2/199.full.pdf+html > > This article on subclinical Cushing's suggests that we need to add the > screening for CS to all with an adrenal adenoma or any suggestion of ld > Cushig's: HTN,obesity, glucose intolearance etc etc. > > In other words everyone with HTN should be screened. > > So in my protocol for easy diagnosis I am adding to the 24 hr urine a > urinary free cortisol testing-which have have done in many but never > found (or at last recognized) a subclinical Cushing's. These authors > suggest that a UFC at the upper limit of normal should have further > testing for Cushing's. Again I have never seen this in at least 100 > pts with Conn's I have tested over the years. But did not have ACTH > levels then. > > It seems like we should also add a plasma cortisol and ACTH to the > blood testing on the aldo day. > > They do not suggest doing a P aldo or a renin in every suspected > Cushing's but I just sent them an email adding this to their schema if > the BP is above 120/80. > > If one looks at the evolution of PA the evolution of adrenal Cushing's > would be similar using urinary cortisol as the illustrative plot for > urine changes in cortisol and the stages of Cushings would be the same > as I have for Conn's but the instead of renin going down we would be > seeing ACTH going down and obesity/glucose intolerance increasing over > time. > > More later. > > CE Grim MD >

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I need to see the data that it is the wrong medicine. Will need to look into it. Can you send me the names of the NIH team again so I can search and contact them.Thanks,CEOn Apr 30, 2012, at 6:26 AM, wrote: Does this change your recommended MCB if CS comes back positive or is untested? NIH was very clear that Spironolactone was the wrong medicine for me because of the way it affected cortisol. (CYP11B2/CYP11B1) I believe they started Maggie on Eplerenone. > > As our discussions of cortisol production have been stimulated by the > NIH experience I did a lit search and just found > > http://www.jabfm.org/content/25/2/199.full.pdf+html > > This article on subclinical Cushing's suggests that we need to add the > screening for CS to all with an adrenal adenoma or any suggestion of > Cushig's: HTN,obesity, glucose intolearance etc etc. > > In other words everyone with HTN should be screened. > > So in my protocol for easy diagnosis I am adding to the 24 hr urine a > urinary free cortisol testing-which have have done in many but never > found (or at last recognized) a subclinical Cushing's. These authors > suggest that a UFC at the upper limit of normal should have further > testing for Cushing's. Again I have never seen this in at least 100 > pts with Conn's I have tested over the years. But did not have ACTH > levels then. > > It seems like we should also add a plasma cortisol and ACTH to the > blood testing on the aldo day. > > They do not suggest doing a P aldo or a renin in every suspected > Cushing's but I just sent them an email adding this to their schema if > the BP is above 120/80. > > If one looks at the evolution of PA the evolution of adrenal Cushing's > would be similar using urinary cortisol as the illustrative plot for > urine changes in cortisol and the stages of Cushings would be the same > as I have for Conn's but the instead of renin going down we would be > seeing ACTH going down and obesity/glucose intolerance increasing over > time. > > More later. > > CE Grim MD >

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