Re: Subclinical Cushings? What to do?

[Guest guest]

, let me see how many blanks I can fill in. I had 6/24hr urine test at

NIH. Cortisol came back normal on 4 and slightly elevated on the other 2. DEX

supression came back normal and if I remember right they said this ment the

excess cortisol was not being caused by the pituitary (you should confirm this

with your doctor). Where they confirmed the SCS was with a late night durnal

cortisol test two nights in a row at 11:30pm and midnight. (Cortisol was

elevated both nights when it should be shut down preparing for sleep.) They

called this " PA masking SCS " .

I have a 2cm adenoma in my right adrenal. My AVS lateralized both excess

aldosterone and cortisol to the right side. I thought this ment a rt. ADx and I

would be as good as new! (not) They recommended eplerenone and watching which

really surprised me and maybe my attending physician - he had already indicated

he wanted to remove it! My guess is they are concerned about my size and risk

but have not considered all factors, my preference may be the biggest factor! I

have just completed a local round for second opinions (PCP twice, Neper, Endo

and 3 Phsyc doctors). They all seem to agree with me but nobody wants to

overrule NIH but they don't scare me! I start the process of getting the detail

from NIH this week but that is a different story!

OK, I had my rant - back to your question.

1) If you do produce excess cortisol you should NOT be on spironolactone due to

the way it antagonizes androgen. This happens in channel 8 and androgen

(CYP11B2) lives next door to cortisol (CYP11B1). The reduction of CYP11B2

causes an increase in CYP11B1 thereby causing excess cortisol to add to the

already excess cortisol and not the best for depression, anxiety and PTSD where

the balance may already be impacted. (I won't get into Seratonin and a

continuious stress loop today!)

2) If you have an adenoma and both aldo and cortisol lateralize to the same

side (the " normal abnormal case " as I understand it) you are all set for ADx.

Your team should be prepared to supplement cortisol until other adrenal kicks

in.

3) The real issue is when one adrenal produces excess aldo and the other

produces excess cortisol. When this becomes a problem they would remove the one

producig cortisol and leave the one with the known adenoma. (They have meds to

control PA but nothing satisfactory for CS! If anybody wants to argue that, I

don't want to hear it - the key word is " satisfactory " . I understand there is

new meds in testig but nothing approved.)

Hopefully that helps you and if it starts a discussion among those

treating with MCBs who happen to have extra stress, depression, insomnia or

maybe even " brain fog " I'll blame you! (I wouldn't have had to explain if you

hadn't asked!)

Questions? Just ask....

>

> mentioned subclinical cushings in an earlier post. I was tested for this

due to a higher than normal 24hr urine cortisol test and glucose intolerance on

some 2 hour glucose test. The doctor did an overnight dex suppression test. My

number came back at 0.40 on that test so the doctors kind of moved on.

>

> My pituitary shows some abnormality on MRIs. All blood work for the pituitary

has been normal.

>

> I am scheduled for an AVS on August 23rd. What does subclinical cushings add

to this puzzle? If one has cushings, would surgery not be recommended even if

unilateral production of aldosterone is found?

>

> I am assuming that one would still recommend removing the offending adrenal,

and then removing the pituitary adenoma if one is found.

>

> I know you have a lot of knowledge about this. My docs at Mayo and Wash U

don't seem concerned about cushings. However, they are always receptive to my

questions and actually collaborate with each other from time to time.

>

> Does subclinical cushings mean that the PA could be a biproduct of the

cushings? Does this mean that even if an AVS shows that surgery is possible,

this could be inaccurate?

>

>

> 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

>

[Guest guest]

Subclinical does not have elevated 24 hr urine cortisol. But could have cyclical Cushing's. As GTT abnormalities are typical of PA esp with low K always be sure you are K repleted before GTT. Most will just do HbA1c now.The best would be for an adrenal bump to be making both cortisol and aldo and when it comes out it cures both.Need more details on what Pit problem on MRI is called. CE Grim MDOn Jul 24, 2012, at 11:16 AM, crzylnebkr wrote:

mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.

My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.

I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone is found?

I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.

I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time.

Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?

35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

[Guest guest]

My MRI shows that the pituitary has a concave type wave to it. Does not appear

to be a pituitary tumor according to the neurologists that have looked at it.

It could be a congenital issue. Very tiny as the local hospital did not see it

on the first MRI done. When I was at Mayo getting evaluated for the 5mm brain

lesion, the neuro there spotted the pituitary abnormality on my original MRI and

the new MRI ordered at Mayo. I have had several follow up MRIs to check on the

brain lesion. The pituitary issue has remained unchanged. My tests for

hormones have all come back normal except for the aldosterone/renin ratio and my

testosterone. Testosterone has been low on 3 out of 6 tests. I am 35 and have

lifted weights most of my life. I don't have any symptoms of the low T other

than maybe anxiety issues about a year ago.

>

> > mentioned subclinical cushings in an earlier post. I was tested for

this due to a higher than normal 24hr urine cortisol test and glucose

intolerance on some 2 hour glucose test. The doctor did an overnight dex

suppression test. My number came back at 0.40 on that test so the doctors kind

of moved on.

> >

> > My pituitary shows some abnormality on MRIs. All blood work for the

pituitary has been normal.

> >

> > I am scheduled for an AVS on August 23rd. What does subclinical cushings add

to this puzzle? If one has cushings, would surgery not be recommended even if

unilateral production of aldosterone is found?

> >

> > I am assuming that one would still recommend removing the offending adrenal,

and then removing the pituitary adenoma if one is found.

> >

> > I know you have a lot of knowledge about this. My docs at Mayo and Wash

U don't seem concerned about cushings. However, they are always receptive to my

questions and actually collaborate with each other from time to time.

> >

> > Does subclinical cushings mean that the PA could be a biproduct of the

cushings? Does this mean that even if an AVS shows that surgery is possible,

this could be inaccurate?

> >

> >

> > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> >

> >

>

[Guest guest]

Personal factor is an important thing to put into the risk benefit analysis. Consultants experience/judgement also goes into the equation. But you are the one that decides the risks you can tolerate. So if your goal is to as certain as possible that you will be around next month (say) for your daughter's wedding then many would delay surgery if you said this is a MUST. If they and you think the risk analysis is unacceptable if you MUST be there then delaying surgery would be the likely outcome of a cost benefit analysis. But you need to work all of your consultant's advice into a risk benefit analysis equation. If you have not gotten a copy of Clinical Epidemiology by D Sackett et al -even one that is 20 years old, I recommend you get it and work on the risk benefit analysis chapter, set it up and then take it with you to each visit so it can be fine tuned. Will be a useful exercise for you and for them.CE Grim MDOn Jul 24, 2012, at 2:04 PM, wrote:

, let me see how many blanks I can fill in. I had 6/24hr urine test at NIH. Cortisol came back normal on 4 and slightly elevated on the other 2. DEX supression came back normal and if I remember right they said this ment the excess cortisol was not being caused by the pituitary (you should confirm this with your doctor). Where they confirmed the SCS was with a late night durnal cortisol test two nights in a row at 11:30pm and midnight. (Cortisol was elevated both nights when it should be shut down preparing for sleep.) They called this "PA masking SCS".

I have a 2cm adenoma in my right adrenal. My AVS lateralized both excess aldosterone and cortisol to the right side. I thought this ment a rt. ADx and I would be as good as new! (not) They recommended eplerenone and watching which really surprised me and maybe my attending physician - he had already indicated he wanted to remove it! My guess is they are concerned about my size and risk but have not considered all factors, my preference may be the biggest factor! I have just completed a local round for second opinions (PCP twice, Neper, Endo and 3 Phsyc doctors). They all seem to agree with me but nobody wants to overrule NIH but they don't scare me! I start the process of getting the detail from NIH this week but that is a different story!

OK, I had my rant - back to your question.

1) If you do produce excess cortisol you should NOT be on spironolactone due to the way it antagonizes androgen. This happens in channel 8 and androgen (CYP11B2) lives next door to cortisol (CYP11B1). The reduction of CYP11B2 causes an increase in CYP11B1 thereby causing excess cortisol to add to the already excess cortisol and not the best for depression, anxiety and PTSD where the balance may already be impacted. (I won't get into Seratonin and a continuious stress loop today!)

2) If you have an adenoma and both aldo and cortisol lateralize to the same side (the "normal abnormal case" as I understand it) you are all set for ADx. Your team should be prepared to supplement cortisol until other adrenal kicks in.

3) The real issue is when one adrenal produces excess aldo and the other produces excess cortisol. When this becomes a problem they would remove the one producig cortisol and leave the one with the known adenoma. (They have meds to control PA but nothing satisfactory for CS! If anybody wants to argue that, I don't want to hear it - the key word is "satisfactory". I understand there is new meds in testig but nothing approved.)

Hopefully that helps you and if it starts a discussion among those treating with MCBs who happen to have extra stress, depression, insomnia or maybe even "brain fog" I'll blame you! (I wouldn't have had to explain if you hadn't asked!)

Questions? Just ask....

>

> mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.

>

> My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.

>

> I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone is found?

>

> I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.

>

> I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time.

>

> Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?

>

>

> 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

>

[Guest guest]

Are you taking or have you ever taken any weight lifters potions, supplements etc. Many contain testosterone but you may not know it as it may not be labeled. Esp if you look or ever looked like Arnold S used to look.And some of these artificial Testost may not show up on routine testost measurement. That is why atheletes use them instead of the real stuff.CE Grim MD On Jul 24, 2012, at 2:34 PM, crzylnebkr wrote:

My MRI shows that the pituitary has a concave type wave to it. Does not appear to be a pituitary tumor according to the neurologists that have looked at it. It could be a congenital issue. Very tiny as the local hospital did not see it on the first MRI done. When I was at Mayo getting evaluated for the 5mm brain lesion, the neuro there spotted the pituitary abnormality on my original MRI and the new MRI ordered at Mayo. I have had several follow up MRIs to check on the brain lesion. The pituitary issue has remained unchanged. My tests for hormones have all come back normal except for the aldosterone/renin ratio and my testosterone. Testosterone has been low on 3 out of 6 tests. I am 35 and have lifted weights most of my life. I don't have any symptoms of the low T other than maybe anxiety issues about a year ago.

>

> > mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.

> >

> > My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.

> >

> > I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone is found?

> >

> > I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.

> >

> > I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time.

> >

> > Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?

> >

> >

> > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> >

> >

>

[Guest guest]

No weightlifting potions. In high school 18 years ago our football trainer

mixed creatine with our gatorade/water during practice. This is the only thing

that I have ever taken and this was unknowingly given to me.

My testosterone was at a high point 545 and at the low point (at Mayo) 124.

Different labs, but the " normal at Mayo was 225.

> > >

> > > > mentioned subclinical cushings in an earlier post. I was tested for

this due to a higher than normal 24hr urine cortisol test and glucose

intolerance on some 2 hour glucose test. The doctor did an overnight dex

suppression test. My number came back at 0.40 on that test so the doctors kind

of moved on.

> > > >

> > > > My pituitary shows some abnormality on MRIs. All blood work for the

pituitary has been normal.

> > > >

> > > > I am scheduled for an AVS on August 23rd. What does subclinical cushings

add to this puzzle? If one has cushings, would surgery not be recommended even

if unilateral production of aldosterone is found?

> > > >

> > > > I am assuming that one would still recommend removing the offending

adrenal, and then removing the pituitary adenoma if one is found.

> > > >

> > > > I know you have a lot of knowledge about this. My docs at Mayo and

Wash U don't seem concerned about cushings. However, they are always receptive

to my questions and actually collaborate with each other from time to time.

> > > >

> > > > Does subclinical cushings mean that the PA could be a biproduct of the

cushings? Does this mean that even if an AVS shows that surgery is possible,

this could be inaccurate?

> > > >

> > > >

> > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

If you ever used strong man type supplements from the gym or Nut store or if you look like Arnold S used to look beware of testost in these things.Some types will not show up in test test and may indeed lower the blood test result.This is why sports guys take them. So cavet emptor. And God Bless America for letting us have access to all the supplements we can buy without gov interference tactics like monitoring what is in them or requiring that the manufact demonstrate that they do good (or harm) to those who use them. Isn't it great to be able to play the great game of "you bet your life" without an intrusive big brother looking over your shoulder or at how small your testicles may be getting. See: Popular ergogenic drugs and supplements in young athletesR Calfee… - Pediatrics, 2006 - Am Acad Pediatrics... Although taking an erroneous dose of a supplement can be risky, an even larger warningto athletes was born out in this study. One brand actually contained 10 mg of testosterone,which, as an anabolic steroid, is banned in the sporting arena. ...On Jul 24, 2012, at 2:34 PM, crzylnebkr wrote:

My MRI shows that the pituitary has a concave type wave to it. Does not appear to be a pituitary tumor according to the neurologists that have looked at it. It could be a congenital issue. Very tiny as the local hospital did not see it on the first MRI done. When I was at Mayo getting evaluated for the 5mm brain lesion, the neuro there spotted the pituitary abnormality on my original MRI and the new MRI ordered at Mayo. I have had several follow up MRIs to check on the brain lesion. The pituitary issue has remained unchanged. My tests for hormones have all come back normal except for the aldosterone/renin ratio and my testosterone. Testosterone has been low on 3 out of 6 tests. I am 35 and have lifted weights most of my life. I don't have any symptoms of the low T other than maybe anxiety issues about a year ago.

>

> > mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.

> >

> > My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.

> >

> > I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone is found?

> >

> > I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.

> >

> > I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time.

> >

> > Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?

> >

> >

> > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> >

> >

>

[Guest guest]

, if I had been DXed w/low testosterone I would make sure they started me

on Eplerenone after the AVS. I can explain gynecomastia, breast bumps,

mamograms, no libido and micro-penis if you like! (Of course if you are looking

for a gender change it is a good first step!)

> >

> > > mentioned subclinical cushings in an earlier post. I was tested for

this due to a higher than normal 24hr urine cortisol test and glucose

intolerance on some 2 hour glucose test. The doctor did an overnight dex

suppression test. My number came back at 0.40 on that test so the doctors kind

of moved on.

> > >

> > > My pituitary shows some abnormality on MRIs. All blood work for the

pituitary has been normal.

> > >

> > > I am scheduled for an AVS on August 23rd. What does subclinical cushings

add to this puzzle? If one has cushings, would surgery not be recommended even

if unilateral production of aldosterone is found?

> > >

> > > I am assuming that one would still recommend removing the offending

adrenal, and then removing the pituitary adenoma if one is found.

> > >

> > > I know you have a lot of knowledge about this. My docs at Mayo and

Wash U don't seem concerned about cushings. However, they are always receptive

to my questions and actually collaborate with each other from time to time.

> > >

> > > Does subclinical cushings mean that the PA could be a biproduct of the

cushings? Does this mean that even if an AVS shows that surgery is possible,

this could be inaccurate?

> > >

> > >

> > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > >

> > >

> >

>

[Guest guest]

Well I was only on 50mg total Spiro before stopping yesterday. My blood

pressure had been very low as I continued to exercise and DASH so the plan is to

go to 25mg of Spiro after AVS if I am not a candidate for surgery. I have the

option of switching to Eplerenone if I want. However, both Mayo and Wash U have

told me that Spiro is preferred because of the track record and they kind of

know the long term outcome of treatment at this point. Not the same with

Eplerone. There is risk with every drug, but the longer the track record the

more comfortable the doctors seem to be to prescribe it. I don't want my family

to have to dial the 800 number after watching a " bad drug " commercial in the

future! So as long as I don't have problems on my 50mg of Spiro I will likely

stick with this long term if necessary.

My BP readings this morning were 126/86, 123/84, and 120/81. With medication I

was usually 118/76. Not a big jump yet but it is only 24 hours after dropping

the meds. I did get up 6 times last night to pee. Today I plan to be strict

low salt and just ate a spinach salad with almost the entire bag of spinach. I

plan to up the low sodium V8 to 24 ounces per day for the 4 weeks without meds.

> > >

> > > > mentioned subclinical cushings in an earlier post. I was tested for

this due to a higher than normal 24hr urine cortisol test and glucose

intolerance on some 2 hour glucose test. The doctor did an overnight dex

suppression test. My number came back at 0.40 on that test so the doctors kind

of moved on.

> > > >

> > > > My pituitary shows some abnormality on MRIs. All blood work for the

pituitary has been normal.

> > > >

> > > > I am scheduled for an AVS on August 23rd. What does subclinical cushings

add to this puzzle? If one has cushings, would surgery not be recommended even

if unilateral production of aldosterone is found?

> > > >

> > > > I am assuming that one would still recommend removing the offending

adrenal, and then removing the pituitary adenoma if one is found.

> > > >

> > > > I know you have a lot of knowledge about this. My docs at Mayo and

Wash U don't seem concerned about cushings. However, they are always receptive

to my questions and actually collaborate with each other from time to time.

> > > >

> > > > Does subclinical cushings mean that the PA could be a biproduct of the

cushings? Does this mean that even if an AVS shows that surgery is possible,

this could be inaccurate?

> > > >

> > > >

> > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > >

> > > >

> > >

> >

>

[Guest guest]

So recommendation is to use 2 at least and average. So looks normal. What did pit hormones show?CE Grim MDOn Jul 24, 2012, at 2:48 PM, crzylnebkr wrote:

No weightlifting potions. In high school 18 years ago our football trainer mixed creatine with our gatorade/water during practice. This is the only thing that I have ever taken and this was unknowingly given to me.

My testosterone was at a high point 545 and at the low point (at Mayo) 124. Different labs, but the "normal at Mayo was 225.

> > >

> > > > mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.

> > > >

> > > > My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.

> > > >

> > > > I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone is found?

> > > >

> > > > I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.

> > > >

> > > > I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time.

> > > >

> > > > Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?

> > > >

> > > >

> > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Keep us posted on the eperelnone effect. They may have a new market. Esp if micro goes to mini to mighty.CE Grim MD On Jul 24, 2012, at 2:58 PM, wrote:

, if I had been DXed w/low testosterone I would make sure they started me on Eplerenone after the AVS. I can explain gynecomastia, breast bumps, mamograms, no libido and micro-penis if you like! (Of course if you are looking for a gender change it is a good first step!)

> >

> > > mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.

> > >

> > > My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.

> > >

> > > I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone is found?

> > >

> > > I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.

> > >

> > > I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time.

> > >

> > > Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?

> > >

> > >

> > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > >

> > >

> >

>

[Guest guest]

Ask them if it is OK to DASH before AVS. Should be OK indeed preferred as that will improve K status which may increase aldo and the low sodium may prevent you from getting really hypertensive.I like their approach. Wonder it I taught any of your St. L team when I was at U of MO Columbia 70-73. Or were they at Indiana 73-84 or UCLA 84-94 or MCW MIlwaukee 94 to 06 or longer.Maybe they have even read some of my 240 articles.CE Grim MDOn Jul 24, 2012, at 3:23 PM, crzylnebkr wrote:

Well I was only on 50mg total Spiro before stopping yesterday. My blood pressure had been very low as I continued to exercise and DASH so the plan is to go to 25mg of Spiro after AVS if I am not a candidate for surgery. I have the option of switching to Eplerenone if I want. However, both Mayo and Wash U have told me that Spiro is preferred because of the track record and they kind of know the long term outcome of treatment at this point. Not the same with Eplerone. There is risk with every drug, but the longer the track record the more comfortable the doctors seem to be to prescribe it. I don't want my family to have to dial the 800 number after watching a "bad drug" commercial in the future! So as long as I don't have problems on my 50mg of Spiro I will likely stick with this long term if necessary.

My BP readings this morning were 126/86, 123/84, and 120/81. With medication I was usually 118/76. Not a big jump yet but it is only 24 hours after dropping the meds. I did get up 6 times last night to pee. Today I plan to be strict low salt and just ate a spinach salad with almost the entire bag of spinach. I plan to up the low sodium V8 to 24 ounces per day for the 4 weeks without meds.

> > >

> > > > mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.

> > > >

> > > > My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.

> > > >

> > > > I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone is found?

> > > >

> > > > I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.

> > > >

> > > > I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time.

> > > >

> > > > Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?

> > > >

> > > >

> > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > >

> > > >

> > >

> >

>

[Guest guest]

I have NEVER heard of anyone's penis shrinking due to Spiro or low T for that

matter! I have heard of someone not going through puberty and having " micro

penis " , but not a regular size penis shrinking! That just doesn't seem likely

to me. Where would the skin go? Just evaporate? If Spiro does shrink a man's

member, that is definitely a side effect that was not mentioned when I started

the Spiro. Are you sure you were not just cold in the doctor's office?

> > >

> > > > mentioned subclinical cushings in an earlier post. I was tested for

this due to a higher than normal 24hr urine cortisol test and glucose

intolerance on some 2 hour glucose test. The doctor did an overnight dex

suppression test. My number came back at 0.40 on that test so the doctors kind

of moved on.

> > > >

> > > > My pituitary shows some abnormality on MRIs. All blood work for the

pituitary has been normal.

> > > >

> > > > I am scheduled for an AVS on August 23rd. What does subclinical cushings

add to this puzzle? If one has cushings, would surgery not be recommended even

if unilateral production of aldosterone is found?

> > > >

> > > > I am assuming that one would still recommend removing the offending

adrenal, and then removing the pituitary adenoma if one is found.

> > > >

> > > > I know you have a lot of knowledge about this. My docs at Mayo and

Wash U don't seem concerned about cushings. However, they are always receptive

to my questions and actually collaborate with each other from time to time.

> > > >

> > > > Does subclinical cushings mean that the PA could be a biproduct of the

cushings? Does this mean that even if an AVS shows that surgery is possible,

this could be inaccurate?

> > > >

> > > >

> > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > >

> > > >

> > >

> >

>

[Guest guest]

Pit hormones have always been normal which is good I would think.

> > > > >

> > > > > > mentioned subclinical cushings in an earlier post. I was tested

for this due to a higher than normal 24hr urine cortisol test and glucose

intolerance on some 2 hour glucose test. The doctor did an overnight dex

suppression test. My number came back at 0.40 on that test so the doctors kind

of moved on.

> > > > > >

> > > > > > My pituitary shows some abnormality on MRIs. All blood work for the

pituitary has been normal.

> > > > > >

> > > > > > I am scheduled for an AVS on August 23rd. What does subclinical

cushings add to this puzzle? If one has cushings, would surgery not be

recommended even if unilateral production of aldosterone is found?

> > > > > >

> > > > > > I am assuming that one would still recommend removing the offending

adrenal, and then removing the pituitary adenoma if one is found.

> > > > > >

> > > > > > I know you have a lot of knowledge about this. My docs at Mayo

and Wash U don't seem concerned about cushings. However, they are always

receptive to my questions and actually collaborate with each other from time to

time.

> > > > > >

> > > > > > Does subclinical cushings mean that the PA could be a biproduct of

the cushings? Does this mean that even if an AVS shows that surgery is possible,

this could be inaccurate?

> > > > > >

> > > > > >

> > > > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

!On Jul 24, 2012, at 3:44 PM, crzylnebkr wrote:

Pit hormones have always been normal which is good I would think.

> > > > >

> > > > > > mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.

> > > > > >

> > > > > > My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.

> > > > > >

> > > > > > I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone is found?

> > > > > >

> > > > > > I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.

> > > > > >

> > > > > > I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time.

> > > > > >

> > > > > > Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?

> > > > > >

> > > > > >

> > > > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Guess you have not gotten old yet.CE Grim MDOn Jul 24, 2012, at 3:42 PM, crzylnebkr wrote:

I have NEVER heard of anyone's penis shrinking due to Spiro or low T for that matter! I have heard of someone not going through puberty and having "micro penis", but not a regular size penis shrinking! That just doesn't seem likely to me. Where would the skin go? Just evaporate? If Spiro does shrink a man's member, that is definitely a side effect that was not mentioned when I started the Spiro. Are you sure you were not just cold in the doctor's office?

> > >

> > > > mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.

> > > >

> > > > My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.

> > > >

> > > > I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone is found?

> > > >

> > > > I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.

> > > >

> > > > I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time.

> > > >

> > > > Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?

> > > >

> > > >

> > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > >

> > > >

> > >

> >

>

[Guest guest]

The doctor at Wash U wants me to keep my potassium up (as high as I can eat

naturally). He is testing K to make sure I don't have low K going into AVS so

he must have thought of this. They did not mention increasing salt before the

test. I didn't ask about this and just thought I would go low salt to stay

safe.

Here is my St. Louis doc's bio from the Wash U website:

Dr. XXXXX received his M.D. and Ph.D. from Washington University School of

Medicine in 1992 where he studied molecular biology with Stuart Kornfeld

(1987-91). He did his medicine and endocrinology clinical training at UCSF where

he also trained in signal transduction and endocrinology research with Henry

Bourne (1995-98).

My Mayo Doc went to University of Tennessee and Mayo Graduate School of

medicine.

> > > > >

> > > > > > mentioned subclinical cushings in an earlier post. I was tested

for this due to a higher than normal 24hr urine cortisol test and glucose

intolerance on some 2 hour glucose test. The doctor did an overnight dex

suppression test. My number came back at 0.40 on that test so the doctors kind

of moved on.

> > > > > >

> > > > > > My pituitary shows some abnormality on MRIs. All blood work for the

pituitary has been normal.

> > > > > >

> > > > > > I am scheduled for an AVS on August 23rd. What does subclinical

cushings add to this puzzle? If one has cushings, would surgery not be

recommended even if unilateral production of aldosterone is found?

> > > > > >

> > > > > > I am assuming that one would still recommend removing the offending

adrenal, and then removing the pituitary adenoma if one is found.

> > > > > >

> > > > > > I know you have a lot of knowledge about this. My docs at Mayo

and Wash U don't seem concerned about cushings. However, they are always

receptive to my questions and actually collaborate with each other from time to

time.

> > > > > >

> > > > > > Does subclinical cushings mean that the PA could be a biproduct of

the cushings? Does this mean that even if an AVS shows that surgery is possible,

this could be inaccurate?

> > > > > >

> > > > > >

> > > > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

I'm 35 so I don't exactly have an AARP card. But shrinking penis??? That would

be horrible. Any credibility to Spiro shrinking a man's penis Dr. Grim? I

would be willing to take a risk with Eprelone if this is even possibly true!

> > > > >

> > > > > > mentioned subclinical cushings in an earlier post. I was tested

for this due to a higher than normal 24hr urine cortisol test and glucose

intolerance on some 2 hour glucose test. The doctor did an overnight dex

suppression test. My number came back at 0.40 on that test so the doctors kind

of moved on.

> > > > > >

> > > > > > My pituitary shows some abnormality on MRIs. All blood work for the

pituitary has been normal.

> > > > > >

> > > > > > I am scheduled for an AVS on August 23rd. What does subclinical

cushings add to this puzzle? If one has cushings, would surgery not be

recommended even if unilateral production of aldosterone is found?

> > > > > >

> > > > > > I am assuming that one would still recommend removing the offending

adrenal, and then removing the pituitary adenoma if one is found.

> > > > > >

> > > > > > I know you have a lot of knowledge about this. My docs at Mayo

and Wash U don't seem concerned about cushings. However, they are always

receptive to my questions and actually collaborate with each other from time to

time.

> > > > > >

> > > > > > Does subclinical cushings mean that the PA could be a biproduct of

the cushings? Does this mean that even if an AVS shows that surgery is possible,

this could be inaccurate?

> > > > > >

> > > > > >

> > > > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Excellent background and training.May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 24, 2012, at 15:51, crzylnebkr <smort@...> wrote:

The doctor at Wash U wants me to keep my potassium up (as high as I can eat naturally). He is testing K to make sure I don't have low K going into AVS so he must have thought of this. They did not mention increasing salt before the test. I didn't ask about this and just thought I would go low salt to stay safe.

Here is my St. Louis doc's bio from the Wash U website:

Dr. XXXXX received his M.D. and Ph.D. from Washington University School of Medicine in 1992 where he studied molecular biology with Stuart Kornfeld (1987-91). He did his medicine and endocrinology clinical training at UCSF where he also trained in signal transduction and endocrinology research with Henry Bourne (1995-98).

My Mayo Doc went to University of Tennessee and Mayo Graduate School of medicine.

> > > > >

> > > > > > mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.

> > > > > >

> > > > > > My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.

> > > > > >

> > > > > > I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone is found?

> > > > > >

> > > > > > I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.

> > > > > >

> > > > > > I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time.

> > > > > >

> > > > > > Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?

> > > > > >

> > > > > >

> > > > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Would think low sodium would also increase also which would be good for AVS. BUT not studied that I know of. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 24, 2012, at 15:51, crzylnebkr <smort@...> wrote:

The doctor at Wash U wants me to keep my potassium up (as high as I can eat naturally). He is testing K to make sure I don't have low K going into AVS so he must have thought of this. They did not mention increasing salt before the test. I didn't ask about this and just thought I would go low salt to stay safe.

Here is my St. Louis doc's bio from the Wash U website:

Dr. XXXXX received his M.D. and Ph.D. from Washington University School of Medicine in 1992 where he studied molecular biology with Stuart Kornfeld (1987-91). He did his medicine and endocrinology clinical training at UCSF where he also trained in signal transduction and endocrinology research with Henry Bourne (1995-98).

My Mayo Doc went to University of Tennessee and Mayo Graduate School of medicine.

> > > > >

> > > > > > mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.

> > > > > >

> > > > > > My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.

> > > > > >

> > > > > > I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone is found?

> > > > > >

> > > > > > I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.

> > > > > >

> > > > > > I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time.

> > > > > >

> > > > > > Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?

> > > > > >

> > > > > >

> > > > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Dr. Grim, my daughter got married 3 years ago so I am all set there! My goal is to be able to walk in, unassisted, for my Grand Daughters' weddings and they are 7 & 8! (I'm not sure that is going to happen with the progression I have seen in my feet if I allow the Metobolic Syndrome to continue!) Have you ever been on long term regiment of narcotics? I have. Don't like it. Kids must have really been in deep shit if they think this is recreation! (If these testosterone patches work I'll show them recreation! - I was thinking strong bones and energy, what were you thinking! )

My other concern is in the stress, depression, dementia and alzehimer arena. There is a lot of work currently going on in this area. I have read enough to think there is something going on here and a couple of doctors I have spoken with agree. (There's no need to go to a wedding if you don't know you're there!) My Dad died from complications of ALZ and I don't plan to repeat tht experiment!

I feel that if I am going to have it removed, now is the time. I probably won't be in much better shape at 70-75 than I am at 65. With the factors of excess aldosterone and excess cortisol compounded by the long term effects of agent orange working against me I need to eliminate what ever I can and the way to do that is by removing the tumor. Yes, I might die on the table or from an infection but I am willing to take that risk. I think the doctors that treated me are really not that concerned, afterall they recommended bariatic surgery and performed a needless AVS which has inherant risks of requiring repair surgery! (Why lateralize the tumor if you are not going to remove it?)

There are also risks of not doing the surgery which I am sure they didn't consider. ie. Extra doctor appointments are $95 each if I don't prove this a side effect of AO. It is 102 miles and the lincoln idles at about 85mph! (Gets a little hairy in the winter time.) There are risks of disease and illness every time I enter hospital. Repeat logic for Phsyco visits but the cost is eliminated due to PTSD. I want to live a long and healthy life but QOL is very important!

So you see, in reality the safest and most prudent way for me to proceed is with the surgery.

> > >> > > mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.> > > > > > My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.> > > > > > I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone is found?> > > > > > I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.> > > > > > I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time. > > > > > > Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?> > > > > > > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.> > >> > > >>

[Guest guest]

Understand. Good folks at the VA that do this? or better to go to Medical School. You want someone who has done a lot of them of course and in folks of your build and age.Adrenal is in a hard place to get to. CE Grim MDOn Jul 25, 2012, at 1:52 PM, wrote:

Dr. Grim, my daughter got married 3 years ago so I am all set there! My goal is to be able to walk in, unassisted, for my Grand Daughters' weddings and they are 7 & 8! (I'm not sure that is going to happen with the progression I have seen in my feet if I allow the Metobolic Syndrome to continue!) Have you ever been on long term regiment of narcotics? I have. Don't like it. Kids must have really been in deep shit if they think this is recreation! (If these testosterone patches work I'll show them recreation! - I was thinking strong bones and energy, what were you thinking! )My other concern is in the stress, depression, dementia and alzehimer arena. There is a lot of work currently going on in this area. I have read enough to think there is something going on here and a couple of doctors I have spoken with agree. (There's no need to go to a wedding if you don't know you're there!) My Dad died from complications of ALZ and I don't plan to repeat tht experiment! I feel that if I am going to have it removed, now is the time. I probably won't be in much better shape at 70-75 than I am at 65. With the factors of excess aldosterone and excess cortisol compounded by the long term effects of agent orange working against me I need to eliminate what ever I can and the way to do that is by removing the tumor. Yes, I might die on the table or from an infection but I am willing to take that risk. I think the doctors that treated me are really not that concerned, afterall they recommended bariatic surgery and performed a needless AVS which has inherant risks of requiring repair surgery! (Why lateralize the tumor if you are not going to remove it?)There are also risks of not doing the surgery which I am sure they didn't consider. ie. Extra doctor appointments are $95 each if I don't prove this a side effect of AO. It is 102 miles and the lincoln idles at about 85mph! (Gets a little hairy in the winter time.) There are risks of disease and illness every time I enter hospital. Repeat logic for Phsyco visits but the cost is eliminated due to PTSD. I want to live a long and healthy life but QOL is very important!So you see, in reality the safest and most prudent way for me to proceed is with the surgery. > > >> > > mentioned subclinical cushings in an earlier post. I was tested for this due to a higher than normal 24hr urine cortisol test and glucose intolerance on some 2 hour glucose test. The doctor did an overnight dex suppression test. My number came back at 0.40 on that test so the doctors kind of moved on.> > > > > > My pituitary shows some abnormality on MRIs. All blood work for the pituitary has been normal.> > > > > > I am scheduled for an AVS on August 23rd. What does subclinical cushings add to this puzzle? If one has cushings, would surgery not be recommended even if unilateral production of aldosterone

is found?> > > > > > I am assuming that one would still recommend removing the offending adrenal, and then removing the pituitary adenoma if one is found.> > > > > > I know you have a lot of knowledge about this. My docs at Mayo and Wash U don't seem concerned about cushings. However, they are always receptive to my questions and actually collaborate with each other from time to time. > > > > > > Does subclinical cushings mean that the PA could be a biproduct of the cushings? Does this mean that even if an AVS shows that surgery is possible, this could be inaccurate?> > > > > > > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.> > >> > > >>

[Guest guest]

If I don't convince NIH that they have tunnel vision I will probably have it

done in Boston. I have already talked w/Dr. Webster (PCP) and told her I was

not comfortable with the local option. (She understood and appeared to agree!)

> > > > >

> > > > > mentioned subclinical cushings in an earlier post. I was tested

for this due to a higher than normal 24hr urine cortisol test and glucose

intolerance on some 2 hour glucose test. The doctor did an overnight dex

suppression test. My number came back at 0.40 on that test so the doctors kind

of moved on.

> > > > >

> > > > > My pituitary shows some abnormality on MRIs. All blood work for the

pituitary has been normal.

> > > > >

> > > > > I am scheduled for an AVS on August 23rd. What does subclinical

cushings add to this puzzle? If one has cushings, would surgery not be

recommended even if unilateral production of aldosterone is found?

> > > > >

> > > > > I am assuming that one would still recommend removing the offending

adrenal, and then removing the pituitary adenoma if one is found.

> > > > >

> > > > > I know you have a lot of knowledge about this. My docs at Mayo

and Wash U don't seem concerned about cushings. However, they are always

receptive to my questions and actually collaborate with each other from time to

time.

> > > > >

> > > > > Does subclinical cushings mean that the PA could be a biproduct of the

cushings? Does this mean that even if an AVS shows that surgery is possible,

this could be inaccurate?

> > > > >

> > > > >

> > > > > 35yr old male. Diagnosed 04/2011. AVS scheduled 08/23.

> > > > >

> > > >

> > > >

> > >

> >

> >

> >

>