Re: Got a call to go get another test done

[Guest guest]

These sorts I'd discussions and answers are best handled by one on one consulting with me as they take considerable time to review and get u an understandable answer. My fee is $500 for 1 year unlimited access to my expertise by you and your medical care team. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 4, 2012, at 22:34, StaceyF <ssminnow@...> wrote:

I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have.

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

Androstenedione- 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 get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know?

She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts?

Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them.

Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue?

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.

[Guest guest]

Fair enough. Not sure my team would be willing to listen but I will keep that

in mind. May just go to U of M, that will be way more than your fee but they

will be a better solution to my young endo who is grasping at straws.

Stacey

>

> > I went and had some labs done a few weeks ago because my aldo suppressed

during the saline test. Here are the results I have.

> > 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

> > Androstenedione- 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 get a call today by the medical assistant that the doctor would like me to

get a ACTH stim test done to give her more information as to my high

deoxycortisol test. Said I would have to come off the Spiro for the test, but

did not know for how long. Had to go ask the doctor. I can not find any info on

a time frame anywhere either in regards to this test, just that it can raise

cortisol. Anyone know?

> > She also said that my testosterone was high normal, but from what I see it

is right in the mid normal range. Any thoughts?

> >

> > Lastly, from what I am reading with a high Deoxycortisol, one would expect a

high ACTH and therefore the test would be dexa suppression, but I am new to all

of this so not a clue. If anyone has any thoughts, I would appreciate them.

> > Labs also showing low ferritin and MCV low. Looks like need more iron. My

WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am

assuming this is from the immune disorder, but can it all be from a cortisol

issue?

> >

> > 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.

> >

> >

>

[Guest guest]

Stacey, First I suggest you go here and print two copies:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057029/pdf/IJHT2011-624691.pdf

Dr. Moraitis is my (and maggiekat7's) attending physician at NIH and this is the

way they do it there. This is the current recommended approach. It really

isn't rocket science but does require attention to detail.

In response to your spironolactone question, you need to be off it a minimum of

4 weeks, they prefer 6 weeks (section 7). Table 4 (top of page 5) tells you

what meds they prefer to control BP (I'm on Verapamil & Terazosin and BP was

139/75 this morning.)

I don't remember your situation but if possible you might consider NIH, Protocol

00-CH-0160:

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

If they accept you into the study all the tests will be done and interpretted

correctly and it will cost you only the transportation to get there - mine was

~$350.

No matter how you go I am happy to encourage and support you any way I can, just

email me. (Can't give medical advice, not licensed yet!)

.....

>

> I went and had some labs done a few weeks ago because my aldo suppressed

during the saline test. Here are the results I have.

> 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

> Androstenedione- 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 get a call today by the medical assistant that the doctor would like me to

get a ACTH stim test done to give her more information as to my high

deoxycortisol test. Said I would have to come off the Spiro for the test, but

did not know for how long. Had to go ask the doctor. I can not find any info

on a time frame anywhere either in regards to this test, just that it can raise

cortisol. Anyone know?

> She also said that my testosterone was high normal, but from what I see it is

right in the mid normal range. Any thoughts?

>

> Lastly, from what I am reading with a high Deoxycortisol, one would expect a

high ACTH and therefore the test would be dexa suppression, but I am new to all

of this so not a clue. If anyone has any thoughts, I would appreciate them.

> Labs also showing low ferritin and MCV low. Looks like need more iron. My

WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I

am assuming this is from the immune disorder, but can it all be from a cortisol

issue?

>

> 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.

>

[Guest guest]

If you provide your " young endo " the second copy of Dr. Moraitis' review article

it my be the only " straw " s/he needs! (I would provide it to them even if I

decided to go to U of M - wouldn't hurt to have another educated doctor in this

world, IMHO!)

.....

> >

> > > I went and had some labs done a few weeks ago because my aldo suppressed

during the saline test. Here are the results I have.

> > > 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

> > > Androstenedione- 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 get a call today by the medical assistant that the doctor would like me

to get a ACTH stim test done to give her more information as to my high

deoxycortisol test. Said I would have to come off the Spiro for the test, but

did not know for how long. Had to go ask the doctor. I can not find any info on

a time frame anywhere either in regards to this test, just that it can raise

cortisol. Anyone know?

> > > She also said that my testosterone was high normal, but from what I see it

is right in the mid normal range. Any thoughts?

> > >

> > > Lastly, from what I am reading with a high Deoxycortisol, one would expect

a high ACTH and therefore the test would be dexa suppression, but I am new to

all of this so not a clue. If anyone has any thoughts, I would appreciate them.

> > > Labs also showing low ferritin and MCV low. Looks like need more iron. My

WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am

assuming this is from the immune disorder, but can it all be from a cortisol

issue?

> > >

> > > 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.

> > >

> > >

> >

>

[Guest guest]

I may be awake finally! A couple other items. If I observed any issues with

your testosterone I would be looking at the " testosterone free " numbers. This

may be a good example of what spironolctone does for you! (Suggest you read

about it at:

http://men.webmd.com/testosterone-15738

then you can draw your own conclusions!)

Looking at your cortisol numbers I believe the doctors at NIH would tell you

that Spironolactone is the absolute WRONG medicine for you to be on but I am not

a doctor so you may want to get a professional opinion. (If they have any

questions tell them to check how Spironolctone affects the CYP11B2 and CYP11B1

genes on Channel 8. I would be interested in their opinion!)

Hope this helps, you know where I am if I can add anything.

.....

> >

> > I went and had some labs done a few weeks ago because my aldo suppressed

during the saline test. Here are the results I have.

> > 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

> > Androstenedione- 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 get a call today by the medical assistant that the doctor would like me to

get a ACTH stim test done to give her more information as to my high

deoxycortisol test. Said I would have to come off the Spiro for the test, but

did not know for how long. Had to go ask the doctor. I can not find any info

on a time frame anywhere either in regards to this test, just that it can raise

cortisol. Anyone know?

> > She also said that my testosterone was high normal, but from what I see it

is right in the mid normal range. Any thoughts?

> >

> > Lastly, from what I am reading with a high Deoxycortisol, one would expect a

high ACTH and therefore the test would be dexa suppression, but I am new to all

of this so not a clue. If anyone has any thoughts, I would appreciate them.

> > Labs also showing low ferritin and MCV low. Looks like need more iron. My

WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I

am assuming this is from the immune disorder, but can it all be from a cortisol

issue?

> >

> > 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.

> >

>

[Guest guest]

Thank you. I will go get those articles and read. I was just confused that she

said my testosterone was high. Even the free is low. They said the spiro would

help with that. Seems backward to me. I am considering NIH as I have been sick

for 3 years but many of the things I have wrong or sxs are just not all the same

as you guys have. I have heard of you all having headaches and it is grom low K

but my K is now 4.4 with dash, spiro and 40 meq supplement and my headache that

has been with me for 3.5 years is actually been worse. Them the lack of immune

system that they say I have had all along, but my labs are showing a steep

decline for the last 1.5 to 2 years. Then I also have the constant smell of

smoke (phantosmia) which appears to make my head hurt worse when it is strong

and my vision blurred. They just want to pick apart every symptom and call it a

separate matter and treat only my sxs and forget the cause.

I am rather sure that she will say come off the Spiro for 2 weeks. Never get to

talk to her, just the med assistant who I know I have more knowledge than she on

this. Doc also said I could just get MRI of abdomen instead if ACTH test and I

told them I wanted both. Thanks for letting mevent.

> > >

> > > I went and had some labs done a few weeks ago because my aldo suppressed

during the saline test. Here are the results I have.

> > > 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

> > > Androstenedione- 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 get a call today by the medical assistant that the doctor would like me

to get a ACTH stim test done to give her more information as to my high

deoxycortisol test. Said I would have to come off the Spiro for the test, but

did not know for how long. Had to go ask the doctor. I can not find any info

on a time frame anywhere either in regards to this test, just that it can raise

cortisol. Anyone know?

> > > She also said that my testosterone was high normal, but from what I see it

is right in the mid normal range. Any thoughts?

> > >

> > > Lastly, from what I am reading with a high Deoxycortisol, one would expect

a high ACTH and therefore the test would be dexa suppression, but I am new to

all of this so not a clue. If anyone has any thoughts, I would appreciate them.

> > > Labs also showing low ferritin and MCV low. Looks like need more iron.

My WBC count has also been going down, 3 years ago was in the 10's now is 5.0.

I am assuming this is from the immune disorder, but can it all be from a

cortisol issue?

> > >

> > > 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.

> > >

> >

>

[Guest guest]

Also this is my 5th endo. 1 local arrogant one, 1 said I had autonomic

dysregulation and it would just go away, 1 at U of M and said that my PTH is

high? No reason just some are like that and need more Vit D (mega dose) because

I am over weight, 1 at Mayo that did more testing and said do not know why but

lets keep an eye on it once a year, then this last one who has at the least gone

further than the others.

> > > >

> > > > I went and had some labs done a few weeks ago because my aldo suppressed

during the saline test. Here are the results I have.

> > > > 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

> > > > Androstenedione- 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 get a call today by the medical assistant that the doctor would like

me to get a ACTH stim test done to give her more information as to my high

deoxycortisol test. Said I would have to come off the Spiro for the test, but

did not know for how long. Had to go ask the doctor. I can not find any info

on a time frame anywhere either in regards to this test, just that it can raise

cortisol. Anyone know?

> > > > She also said that my testosterone was high normal, but from what I see

it is right in the mid normal range. Any thoughts?

> > > >

> > > > Lastly, from what I am reading with a high Deoxycortisol, one would

expect a high ACTH and therefore the test would be dexa suppression, but I am

new to all of this so not a clue. If anyone has any thoughts, I would

appreciate them.

> > > > Labs also showing low ferritin and MCV low. Looks like need more iron.

My WBC count has also been going down, 3 years ago was in the 10's now is 5.0.

I am assuming this is from the immune disorder, but can it all be from a

cortisol issue?

> > > >

> > > > 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.

> > > >

> > >

> >

>

[Guest guest]

I had the constant smell of smoke. It was related to calcium and

vitamin d dysregulation I think.

I will get it if my calcium levels get too high. I take Benicar now

and I have now got the phantosmia in a while.

I am in the process of being tested but I think I may have

complications of Lyme disease or some other kind of intracellular

bacteria infection.

Phyllis

On 5/5/2012 11:44 AM, StaceyF wrote:

Thank you. I will go get those articles and read. I was

just confused that she said my testosterone was high. Even

the free is low. They said the spiro would help with that.

Seems backward to me. I am considering NIH as I have been

sick for 3 years but many of the things I have wrong or

sxs are just not all the same as you guys have. I have

heard of you all having headaches and it is grom low K but

my K is now 4.4 with dash, spiro and 40 meq supplement and

my headache that has been with me for 3.5 years is

actually been worse. Them the lack of immune system that

they say I have had all along, but my labs are showing a

steep decline for the last 1.5 to 2 years. Then I also

have the constant smell of smoke (phantosmia) which

appears to make my head hurt worse when it is strong and

my vision blurred. They just want to pick apart every

symptom and call it a separate matter and treat only my

sxs and forget the cause.

I am rather sure that she will say come off the Spiro for

2 weeks. Never get to talk to her, just the med assistant

who I know I have more knowledge than she on this. Doc

also said I could just get MRI of abdomen instead if ACTH

test and I told them I wanted both. Thanks for letting

mevent.

> > >

> > > I went and had some labs done a few weeks

ago because my aldo suppressed during the saline test.

Here are the results I have.

> > > 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

> > > Androstenedione- 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 get a call today by the medical assistant

that the doctor would like me to get a ACTH stim test done

to give her more information as to my high deoxycortisol

test. Said I would have to come off the Spiro for the

test, but did not know for how long. Had to go ask the

doctor. I can not find any info on a time frame anywhere

either in regards to this test, just that it can raise

cortisol. Anyone know?

> > > She also said that my testosterone was high

normal, but from what I see it is right in the mid normal

range. Any thoughts?

> > >

> > > Lastly, from what I am reading with a high

Deoxycortisol, one would expect a high ACTH and therefore

the test would be dexa suppression, but I am new to all of

this so not a clue. If anyone has any thoughts, I would

appreciate them.

> > > Labs also showing low ferritin and MCV low.

Looks like need more iron. My WBC count has also been

going down, 3 years ago was in the 10's now is 5.0. I am

assuming this is from the immune disorder, but can it all

be from a cortisol issue?

> > >

> > > 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.

> > >

> >

>

[Guest guest]

We are not all that different, my K was 4.8 - 5.0 when I was DXed! (And I have

had a headache since November!) I wouldn't waste my time with further testing

of PA or cortisol unless I had been off spiro a minimum of 4 weeks and other

meds that may affect it for 2 weeks.

An MRI might be good but I would suggest aiming a little higher. Cortisol,

testosterone, etc. issues can be triggered by the pituitary gland from what I

understand. Finding an adrenal adenoma will mean nothing until they determine

if it is functioning.

Vent anytime - It's good for all of us!

> > > >

> > > > I went and had some labs done a few weeks ago because my aldo suppressed

during the saline test. Here are the results I have.

> > > > 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

> > > > Androstenedione- 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 get a call today by the medical assistant that the doctor would like

me to get a ACTH stim test done to give her more information as to my high

deoxycortisol test. Said I would have to come off the Spiro for the test, but

did not know for how long. Had to go ask the doctor. I can not find any info

on a time frame anywhere either in regards to this test, just that it can raise

cortisol. Anyone know?

> > > > She also said that my testosterone was high normal, but from what I see

it is right in the mid normal range. Any thoughts?

> > > >

> > > > Lastly, from what I am reading with a high Deoxycortisol, one would

expect a high ACTH and therefore the test would be dexa suppression, but I am

new to all of this so not a clue. If anyone has any thoughts, I would

appreciate them.

> > > > Labs also showing low ferritin and MCV low. Looks like need more iron.

My WBC count has also been going down, 3 years ago was in the 10's now is 5.0.

I am assuming this is from the immune disorder, but can it all be from a

cortisol issue?

> > > >

> > > > 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.

> > > >

> > >

> >

>

[Guest guest]

I also have phantosmia, which started at the same time as the rest of my

symptoms (high bp, low k, exhaustion). Mine comes and goes. My endo said the

phantosmia wasn't related to PA. Seems odd that 3 of us have the same symptom.

> > > > >

> > > > > I went and had some labs done a few weeks ago because my aldo

> > suppressed during the saline test. Here are the results I have.

> > > > > 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

> > > > > Androstenedione- 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 get a call today by the medical assistant that the doctor

> > would like me to get a ACTH stim test done to give her more

> > information as to my high deoxycortisol test. Said I would have to

> > come off the Spiro for the test, but did not know for how long. Had to

> > go ask the doctor. I can not find any info on a time frame anywhere

> > either in regards to this test, just that it can raise cortisol.

> > Anyone know?

> > > > > She also said that my testosterone was high normal, but from

> > what I see it is right in the mid normal range. Any thoughts?

> > > > >

> > > > > Lastly, from what I am reading with a high Deoxycortisol, one

> > would expect a high ACTH and therefore the test would be dexa

> > suppression, but I am new to all of this so not a clue. If anyone has

> > any thoughts, I would appreciate them.

> > > > > Labs also showing low ferritin and MCV low. Looks like need more

> > iron. My WBC count has also been going down, 3 years ago was in the

> > 10's now is 5.0. I am assuming this is from the immune disorder, but

> > can it all be from a cortisol issue?

> > > > >

> > > > > 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.

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

But we can teach him to care better for all the others he and the rest of your team have been missing.UofMich is the best spent a year there with Dr.Conn in 69-70On May 5, 2012, at 6:21 AM, StaceyF wrote: Fair enough. Not sure my team would be willing to listen but I will keep that in mind. May just go to U of M, that will be way more than your fee but they will be a better solution to my young endo who is grasping at straws. Stacey > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > 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 > > Androstenedione- 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 get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > 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. > > > > >

[Guest guest]

Would also take my evolution article and concept which is not discussed in Dr. Ms review.CE Grim MDOn May 5, 2012, at 6:47 AM, wrote: If you provide your "young endo" the second copy of Dr. Moraitis' review article it my be the only "straw" s/he needs! (I would provide it to them even if I decided to go to U of M - wouldn't hurt to have another educated doctor in this world, IMHO!) .... > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > 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 > > > Androstenedione- 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 get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > 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. > > > > > > > > >

[Guest guest]

Hmm How does spiro affect the CYP11B2 and CYP11B1 genes? CE Grim MD On May 5, 2012, at 9:25 AM, wrote: I may be awake finally! A couple other items. If I observed any issues with your testosterone I would be looking at the "testosterone free" numbers. This may be a good example of what spironolctone does for you! (Suggest you read about it at: http://men.webmd.com/testosterone-15738 then you can draw your own conclusions!) Looking at your cortisol numbers I believe the doctors at NIH would tell you that Spironolactone is the absolute WRONG medicine for you to be on but I am not a doctor so you may want to get a professional opinion. (If they have any questions tell them to check how Spironolctone affects the CYP11B2 and CYP11B1 genes on Channel 8. I would be interested in their opinion!) Hope this helps, you know where I am if I can add anything. .... > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > 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 > > Androstenedione- 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 get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > 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. > > >

[Guest guest]

ACTH test would not be indicated at this time. IMHO.On May 5, 2012, at 10:44 AM, StaceyF wrote: Thank you. I will go get those articles and read. I was just confused that she said my testosterone was high. Even the free is low. They said the spiro would help with that. Seems backward to me. I am considering NIH as I have been sick for 3 years but many of the things I have wrong or sxs are just not all the same as you guys have. I have heard of you all having headaches and it is grom low K but my K is now 4.4 with dash, spiro and 40 meq supplement and my headache that has been with me for 3.5 years is actually been worse. Them the lack of immune system that they say I have had all along, but my labs are showing a steep decline for the last 1.5 to 2 years. Then I also have the constant smell of smoke (phantosmia) which appears to make my head hurt worse when it is strong and my vision blurred. They just want to pick apart every symptom and call it a separate matter and treat only my sxs and forget the cause. I am rather sure that she will say come off the Spiro for 2 weeks. Never get to talk to her, just the med assistant who I know I have more knowledge than she on this. Doc also said I could just get MRI of abdomen instead if ACTH test and I told them I wanted both. Thanks for letting mevent. > > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > 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 > > > Androstenedione- 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 get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > 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. > > > > > >

[Guest guest]

I sound like a money saver.CE Grim MDOn May 5, 2012, at 10:50 AM, StaceyF wrote: Also this is my 5th endo. 1 local arrogant one, 1 said I had autonomic dysregulation and it would just go away, 1 at U of M and said that my PTH is high? No reason just some are like that and need more Vit D (mega dose) because I am over weight, 1 at Mayo that did more testing and said do not know why but lets keep an eye on it once a year, then this last one who has at the least gone further than the others. > > > > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > > 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 > > > > Androstenedione- 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 get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > > > 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. > > > > > > > > > >

[Guest guest]

I have explained this to you probably a dozen times, you need to search on

" CYP11B2 " and check some of those 172 hits you will get.

I really don't see how you can question NIH's observation that Spironolactone

was the wrong med for me w/o understanding this concept! In fact, if you don't

inderstand how spiro is affecting cortosol I don't see how you can decide

whether Spiro or Eplere is the approprite med to RX!

> > > >

> > > > I went and had some labs done a few weeks ago because my aldo

> > suppressed during the saline test. Here are the results I have.

> > > > 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

> > > > Androstenedione- 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 get a call today by the medical assistant that the doctor

> > would like me to get a ACTH stim test done to give her more

> > information as to my high deoxycortisol test. Said I would have to

> > come off the Spiro for the test, but did not know for how long. Had

> > to go ask the doctor. I can not find any info on a time frame

> > anywhere either in regards to this test, just that it can raise

> > cortisol. Anyone know?

> > > > She also said that my testosterone was high normal, but from

> > what I see it is right in the mid normal range. Any thoughts?

> > > >

> > > > Lastly, from what I am reading with a high Deoxycortisol, one

> > would expect a high ACTH and therefore the test would be dexa

> > suppression, but I am new to all of this so not a clue. If anyone

> > has any thoughts, I would appreciate them.

> > > > Labs also showing low ferritin and MCV low. Looks like need more

> > iron. My WBC count has also been going down, 3 years ago was in the

> > 10's now is 5.0. I am assuming this is from the immune disorder, but

> > can it all be from a cortisol issue?

> > > >

> > > > 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.

> > > >

> > >

> >

> >

>

[Guest guest]

I know ACEs have been associated with loss of taste and smell by dont know about ARBs.On May 5, 2012, at 11:09 AM, Phyllis wrote: I had the constant smell of smoke. It was related to calcium and vitamin d dysregulation I think. I will get it if my calcium levels get too high. I take Benicar now and I have now got the phantosmia in a while. I am in the process of being tested but I think I may have complications of Lyme disease or some other kind of intracellular bacteria infection. Phyllis On 5/5/2012 11:44 AM, StaceyF wrote: Thank you. I will go get those articles and read. I was just confused that she said my testosterone was high. Even the free is low. They said the spiro would help with that. Seems backward to me. I am considering NIH as I have been sick for 3 years but many of the things I have wrong or sxs are just not all the same as you guys have. I have heard of you all having headaches and it is grom low K but my K is now 4.4 with dash, spiro and 40 meq supplement and my headache that has been with me for 3.5 years is actually been worse. Them the lack of immune system that they say I have had all along, but my labs are showing a steep decline for the last 1.5 to 2 years. Then I also have the constant smell of smoke (phantosmia) which appears to make my head hurt worse when it is strong and my vision blurred. They just want to pick apart every symptom and call it a separate matter and treat only my sxs and forget the cause. I am rather sure that she will say come off the Spiro for 2 weeks. Never get to talk to her, just the med assistant who I know I have more knowledge than she on this. Doc also said I could just get MRI of abdomen instead if ACTH test and I told them I wanted both. Thanks for letting mevent. > > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > 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 > > > Androstenedione- 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 get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > 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. > > > > > >

[Guest guest]

This is concerning to me because I read that phantosmia could be

warning sign of a stroke to come. 5 months after I started getting

phantosmia, I had a stroke. Maybe coincidence, I don't know. I also

had uncontrolled HBP with a high salt diet at the time of my stroke.

Phyllis

On 5/5/2012 12:49 PM, jessdell72 wrote:

I also have phantosmia, which started at the same time as

the rest of my symptoms (high bp, low k, exhaustion). Mine

comes and goes. My endo said the phantosmia wasn't related

to PA. Seems odd that 3 of us have the same symptom.

> > > > >

> > > > > I went and had some labs done a

few weeks ago because my aldo

> > suppressed during the saline test. Here are the

results I have.

> > > > > 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

> > > > > Androstenedione- 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 get a call today by the medical

assistant that the doctor

> > would like me to get a ACTH stim test done to

give her more

> > information as to my high deoxycortisol test.

Said I would have to

> > come off the Spiro for the test, but did not

know for how long. Had to

> > go ask the doctor. I can not find any info on a

time frame anywhere

> > either in regards to this test, just that it can

raise cortisol.

> > Anyone know?

> > > > > She also said that my

testosterone was high normal, but from

> > what I see it is right in the mid normal range.

Any thoughts?

> > > > >

> > > > > Lastly, from what I am reading

with a high Deoxycortisol, one

> > would expect a high ACTH and therefore the test

would be dexa

> > suppression, but I am new to all of this so not

a clue. If anyone has

> > any thoughts, I would appreciate them.

> > > > > Labs also showing low ferritin

and MCV low. Looks like need more

> > iron. My WBC count has also been going down, 3

years ago was in the

> > 10's now is 5.0. I am assuming this is from the

immune disorder, but

> > can it all be from a cortisol issue?

> > > > >

> > > > > 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.

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

aldo causes high K in saliva and some complain of a metallic taste. If it does it in the saliva may also affect smell but no data. Another good reason we need a super database.CE Grim MDOn May 5, 2012, at 11:49 AM, jessdell72 wrote: I also have phantosmia, which started at the same time as the rest of my symptoms (high bp, low k, exhaustion). Mine comes and goes. My endo said the phantosmia wasn't related to PA. Seems odd that 3 of us have the same symptom. > > > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > > 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 > > > > > Androstenedione- 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 get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had to > > go ask the doctor. I can not find any info on a time frame anywhere > > either in regards to this test, just that it can raise cortisol. > > Anyone know? > > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone has > > any thoughts, I would appreciate them. > > > > > Labs also showing low ferritin and MCV low. Looks like need more > > iron. My WBC count has also been going down, 3 years ago was in the > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > can it all be from a cortisol issue? > > > > > > > > > > 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. > > > > > > > > > > > > > > > > >

[Guest guest]

Even with this: 11 deoxycortisol 99 ng/dl (<=62) HIGH

11-Deoxycortisol (Compound S) is the immediate precursor of cortisol:

11 beta-hydroxylase

11-deoxycortisol--------------------------->cortisol

and is typically increased when adrenocorticotropic hormone (ACTH) levels are

increased (eg, Cushing disease, ACTH-producing tumors) or in 11 beta-hydroxylase

deficiency, a rare subform of congenital adrenal hyperplasia (CAH). In CAH due

to 11 beta-hydroxylase deficiency, cortisol levels are low, resulting in

increased pituitary ACTH production and increased serum and urine

11-deoxycortisol levels.

I stand by my original post unless you want to screw around with it a couple

more years!

….

> > > > >

> > > > > I went and had some labs done a few weeks ago because my aldo

> > suppressed during the saline test. Here are the results I have.

> > > > > 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

> > > > > Androstenedione- 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 get a call today by the medical assistant that the doctor

> > would like me to get a ACTH stim test done to give her more

> > information as to my high deoxycortisol test. Said I would have to

> > come off the Spiro for the test, but did not know for how long. Had

> > to go ask the doctor. I can not find any info on a time frame

> > anywhere either in regards to this test, just that it can raise

> > cortisol. Anyone know?

> > > > > She also said that my testosterone was high normal, but from

> > what I see it is right in the mid normal range. Any thoughts?

> > > > >

> > > > > Lastly, from what I am reading with a high Deoxycortisol, one

> > would expect a high ACTH and therefore the test would be dexa

> > suppression, but I am new to all of this so not a clue. If anyone

> > has any thoughts, I would appreciate them.

> > > > > Labs also showing low ferritin and MCV low. Looks like need

> > more iron. My WBC count has also been going down, 3 years ago was in

> > the 10's now is 5.0. I am assuming this is from the immune disorder,

> > but can it all be from a cortisol issue?

> > > > >

> > > > > 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.

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Yes I did search CYP11B2 and spironolactone and came up with nothing. If I understood the concept I would not be asking.did find this from Italy. Are you Italian?CE Grim MDJ Hypertens. 2011 Sep;29(9):1773-7.Concurrent primary aldosteronism and subclinical cortisol hypersecretion: a prospective study.Fallo F, Bertello C, Tizzani D, Fassina A, Boulkroun S, Sonino N, Monticone S, Viola A, Veglio F, Mulatero P.SourceDepartment of Medical and Surgical Sciences, University of Padova, Padova, Italy. francesco.fallo@...AbstractBACKGROUND:Primary aldosteronism is the most frequent cause of secondary hypertension and is responsible for an increased risk of cardiometabolic complications. A concomitant subtle cortisol hyperproduction could enhance cardiovascular risk. We prospectively estimated the occurrence of subclinical hypercortisolism in primary aldosteronism patients.METHODS:In a large population of hypertensive patients without clinical signs of hypercortisolism, 76 consecutive patients with primary aldosteronism were investigated. Differential diagnosis between unilateral and bilateral aldosterone hypersecretion was made by computed tomography/MRI and/or adrenal venous sampling (AVS). Subclinical hypercortisolism was defined as failure to suppress plasma cortisol to less than 50 nmol/l after 1 mg-overnight dexamethasone, used as screening test, and at least one of two other abnormal hormonal parameters, that is, adrenocorticotrophin (ACTH) less than 2 pmol/l and urinary cortisol more than 694 nmol/24 h.RESULTS:Three out of 76 patients had postdexamethasone plasma cortisol more than 50 nmol/l. Only one also showed low-normal ACTH and mildly elevated urinary cortisol. The patient had a right 4 cm adrenal mass. Laparoscopic adrenalectomy was followed by short-term steroid replacement to prevent adrenal insufficiency. In-situ hybridization showed CYP11B1 expression exclusively in tumoral tissue, whereas CYP11B2 was expressed only in a peritumoral region composed of zona glomerulosa-like cells, suggesting the co-existence of a cortisol-producing adenoma and an aldosterone-producing hyperplasia in the same adrenal. The restoration of hormone abnormalities to normal levels was confirmed at 12 months of follow-up.CONCLUSION:Concurrent aldosterone and subclinical cortisol hypersecretion seems to be a rare event in primary aldosteronism patients; however, its detection by appropriate testing is important to avoid AVS misinterpretation.CE Grim MDOn May 5, 2012, at 1:19 PM, wrote: I have explained this to you probably a dozen times, you need to search on "CYP11B2" and check some of those 172 hits you will get. I really don't see how you can question NIH's observation that Spironolactone was the wrong med for me w/o understanding this concept! In fact, if you don't inderstand how spiro is affecting cortosol I don't see how you can decide whether Spiro or Eplere is the approprite med to RX! > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > 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 > > > > Androstenedione- 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 get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had > > to go ask the doctor. I can not find any info on a time frame > > anywhere either in regards to this test, just that it can raise > > cortisol. Anyone know? > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone > > has any thoughts, I would appreciate them. > > > > Labs also showing low ferritin and MCV low. Looks like need more > > iron. My WBC count has also been going down, 3 years ago was in the > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > can it all be from a cortisol issue? > > > > > > > > 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. > > > > > > > > > > > >

[Guest guest]

Possible DASHING now would be my recommenation if not.CE GrimMDOn May 5, 2012, at 1:27 PM, Phyllis wrote: This is concerning to me because I read that phantosmia could be warning sign of a stroke to come. 5 months after I started getting phantosmia, I had a stroke. Maybe coincidence, I don't know. I also had uncontrolled HBP with a high salt diet at the time of my stroke. Phyllis On 5/5/2012 12:49 PM, jessdell72 wrote: I also have phantosmia, which started at the same time as the rest of my symptoms (high bp, low k, exhaustion). Mine comes and goes. My endo said the phantosmia wasn't related to PA. Seems odd that 3 of us have the same symptom. > > > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > > 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 > > > > > Androstenedione- 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 get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had to > > go ask the doctor. I can not find any info on a time frame anywhere > > either in regards to this test, just that it can raise cortisol. > > Anyone know? > > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone has > > any thoughts, I would appreciate them. > > > > > Labs also showing low ferritin and MCV low. Looks like need more > > iron. My WBC count has also been going down, 3 years ago was in the > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > can it all be from a cortisol issue? > > > > > > > > > > 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. > > > > > > > > > > > > > > > > >

[Guest guest]

I frequently have the metal taste like medicine in my mouth.

Phyllis

On 5/5/2012 2:31 PM, Clarence Grim wrote:

aldo causes high K in saliva and some complain of a

metallic taste. If it does it in the saliva may also

affect smell but no data. Another good reason we need a

super database.

CE Grim MD

On May 5, 2012, at 11:49 AM, jessdell72 wrote:

I also have phantosmia, which started at the

same time as the rest of my symptoms (high bp,

low k, exhaustion). Mine comes and goes. My endo

said the phantosmia wasn't related to PA. Seems

odd that 3 of us have the same symptom.

> > > > >

> > > > > I went and had some

labs done a few weeks ago because my aldo

> > suppressed during the saline test.

Here are the results I have.

> > > > > 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

> > > > > Androstenedione- 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 get a call today by

the medical assistant that the doctor

> > would like me to get a ACTH stim test

done to give her more

> > information as to my high

deoxycortisol test. Said I would have to

> > come off the Spiro for the test, but

did not know for how long. Had to

> > go ask the doctor. I can not find any

info on a time frame anywhere

> > either in regards to this test, just

that it can raise cortisol.

> > Anyone know?

> > > > > She also said that my

testosterone was high normal, but from

> > what I see it is right in the mid

normal range. Any thoughts?

> > > > >

> > > > > Lastly, from what I am

reading with a high Deoxycortisol, one

> > would expect a high ACTH and therefore

the test would be dexa

> > suppression, but I am new to all of

this so not a clue. If anyone has

> > any thoughts, I would appreciate them.

> > > > > Labs also showing low

ferritin and MCV low. Looks like need more

> > iron. My WBC count has also been going

down, 3 years ago was in the

> > 10's now is 5.0. I am assuming this is

from the immune disorder, but

> > can it all be from a cortisol issue?

> > > > >

> > > > > 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.

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Sounds like PA to me.CE Grim MDOn May 5, 2012, at 2:12 PM, Phyllis wrote: I frequently have the metal taste like medicine in my mouth. Phyllis On 5/5/2012 2:31 PM, Clarence Grim wrote: aldo causes high K in saliva and some complain of a metallic taste. If it does it in the saliva may also affect smell but no data. Another good reason we need a super database. CE Grim MD On May 5, 2012, at 11:49 AM, jessdell72 wrote: I also have phantosmia, which started at the same time as the rest of my symptoms (high bp, low k, exhaustion). Mine comes and goes. My endo said the phantosmia wasn't related to PA. Seems odd that 3 of us have the same symptom. > > > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > > 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 > > > > > Androstenedione- 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 get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had to > > go ask the doctor. I can not find any info on a time frame anywhere > > either in regards to this test, just that it can raise cortisol. > > Anyone know? > > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone has > > any thoughts, I would appreciate them. > > > > > Labs also showing low ferritin and MCV low. Looks like need more > > iron. My WBC count has also been going down, 3 years ago was in the > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > can it all be from a cortisol issue? > > > > > > > > > > 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. > > > > > > > > > > > > > > > > >

[Guest guest]

Also a sign of pituitary tumor along with vision changes and hormone

alterations. Mine comes and goes too, but lately here more than not. Also it

is in one nostril. I can plug my right and it is there, plug my left and the

smell is gone. It even makes my throat hurt, like you want to cough because you

are inhaling second hand smoke. No one smokes in my house, yet I feel like i am

in a casino.

> > > > > > >

> > > > > > > I went and had some labs done a few weeks ago because my aldo

> > > > suppressed during the saline test. Here are the results I have.

> > > > > > > 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

> > > > > > > Androstenedione- 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 get a call today by the medical assistant that the doctor

> > > > would like me to get a ACTH stim test done to give her more

> > > > information as to my high deoxycortisol test. Said I would have to

> > > > come off the Spiro for the test, but did not know for how long.

> > Had to

> > > > go ask the doctor. I can not find any info on a time frame anywhere

> > > > either in regards to this test, just that it can raise cortisol.

> > > > Anyone know?

> > > > > > > She also said that my testosterone was high normal, but from

> > > > what I see it is right in the mid normal range. Any thoughts?

> > > > > > >

> > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one

> > > > would expect a high ACTH and therefore the test would be dexa

> > > > suppression, but I am new to all of this so not a clue. If anyone has

> > > > any thoughts, I would appreciate them.

> > > > > > > Labs also showing low ferritin and MCV low. Looks like need

> > more

> > > > iron. My WBC count has also been going down, 3 years ago was in the

> > > > 10's now is 5.0. I am assuming this is from the immune disorder, but

> > > > can it all be from a cortisol issue?

> > > > > > >

> > > > > > > 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.

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