Re: Got a call to go get another test done

[Guest guest]

Also found out after asking for the attached report they did not give me last

time regarding deoxycorticosterone. It is also elevated. 31 ng/dl with

reference of 1.5-13.0 ng/dl. It states normal after ACTH stimulation is 14-31

ng/dl so if they stimulate it and it is already a 31, I can bet it will be more

than 33 ng/dl. My only problem with CAH is the androgen issues. I have NO

excess hair or sex characteristic abnormalities, no changes in menstrual cycle

so do not know how it can be the 11beta hydroxylase deficiency. I did see an

article about a deoxycorticosterone producing tumor, but it is only a case

report.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2909735/

> > > > > >

> > > > > > 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]

Is spiro and vit D your only meds?>> 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]

Oh goodness no, on my original I had put them, but they do not seem to come

with. Levothyroxin, simvastatin, 40 meq potassium, high dose magnesium,

selenium, wellbutrin xl 450mg, klonopin, alpha lipoic acid, nuvigil (to keep me

awake), phenergen as needed for nausea, fioricet ( for headache) and newly added

AMANTADINE for headache. I have been on a boat load of meds to prevent the

headache which all did not work. I was also on ACE inhibitor until July last

year and came off the beta blocker in November prior to the aldosterone and

renin testing. Did not go back on Spiro until last month. Was on it for about

a month then off for testing. Before was on maxzide and it dropped my K to 2.9.

> > > > > > >

> > > > > > > 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]

Doca tumors are very rare and have usually have very low aldo as the DOCA salt retention suppresses renin. Just like what happens when I gave very low doses of DOCA to normals in the 70s. Aldo and renin suppressed to zero very quickly. ref in my CV.CE Grim MDOn May 5, 2012, at 3:46 PM, Bingham wrote: Is spiro and vit D your only meds?>> 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]

You have PA and likely do not need most of the other meds when this get straightened out. Once you find a team who can work with getting the problem under control. Where do you live?CE Grim MD.On May 5, 2012, at 4:00 PM, StaceyF wrote: Oh goodness no, on my original I had put them, but they do not seem to come with. Levothyroxin, simvastatin, 40 meq potassium, high dose magnesium, selenium, wellbutrin xl 450mg, klonopin, alpha lipoic acid, nuvigil (to keep me awake), phenergen as needed for nausea, fioricet ( for headache) and newly added AMANTADINE for headache. I have been on a boat load of meds to prevent the headache which all did not work. I was also on ACE inhibitor until July last year and came off the beta blocker in November prior to the aldosterone and renin testing. Did not go back on Spiro until last month. Was on it for about a month then off for testing. Before was on maxzide and it dropped my K to 2.9. > > > > > > > > > > > > > > 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]

Lansing, Michigan. You have recommended Dr. Greckin and I am trying to get

referred. I saw Dr. Esfandiari at U of M already and she was of no help. That

is why I am a bit hesitant to spend more money there.

> > > > > > > > >

> > > > > > > > > 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]

Hey Stacey, I had vicious headaches off and on, during the undiagnosed years. Now I had severe severe HTN then too, but that did not seem to directly correlate with the headaches. I KNEW they weren't migraines, at least they didn't have the migraines hallmarks. But I told my wife a few months ago, that I do not recall a single headache ALL of 2011. I was finally treated for the hyperaldosteronism in 10/2010 and no headache in 2011 - not bad. Now, I have anemia, don't know why, and right after the new year when I told my wife that I got headaches again. But we know why this time.

Oh I think, and am pretty sure, it was a low potassium. May not be your reason, but sure was mine.

From: StaceyF <ssminnow@...>Subject: Re: Got a call to go get another test donehyperaldosteronism Date: Saturday, May 5, 2012, 7:03 PM

Lansing, Michigan. You have recommended Dr. Greckin and I am trying to get referred. I saw Dr. Esfandiari at U of M already and she was of no help. That is why I am a bit hesitant to spend more money there. > > > > > > > > >> > > > > > > > > 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]

My headache has been with me non stop since Dec 30 2008. Never goes away just

sometimes more bearable. It does not seem to correlate with the HTN as when it

is normal, the headache can be at its worst. I thought maybe the low K after

reading your stories here, but now I am finally in the 4's. Actually 4.4. Best

it has been in 3 years and still the headache. I was hoping for relief when I

got the K under control and have been on low sodium for 2 months.

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]

Headache can be from many causes. How do you sleep? When was the last time you

had eyes checked? Have they done CT or MRI on head?

> > > > > > > > > > >

> > > > > > > > > > > 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]

Regression/"cure" of long standing headaches with treatment of PA is one of the rewards I have gotten over the years. CEOn May 6, 2012, at 3:25 AM, Bingham wrote: Hey Stacey, I had vicious headaches off and on, during the undiagnosed years. Now I had severe severe HTN then too, but that did not seem to directly correlate with the headaches. I KNEW they weren't migraines, at least they didn't have the migraines hallmarks. But I told my wife a few months ago, that I do not recall a single headache ALL of 2011. I was finally treated for the hyperaldosteronism in 10/2010 and no headache in 2011 - not bad. Now, I have anemia, don't know why, and right after the new year when I told my wife that I got headaches again. But we know why this time. Oh I think, and am pretty sure, it was a low potassium. May not be your reason, but sure was mine. From: StaceyF <ssminnow@...>Subject: Re: Got a call to go get another test donehyperaldosteronism Date: Saturday, May 5, 2012, 7:03 PM Lansing, Michigan. You have recommended Dr. Greckin and I am trying to get referred. I saw Dr. Esfandiari at U of M already and she was of no help. That is why I am a bit hesitant to spend more money there. > > > > > > > > >> > > > > > > > > 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]

And your other meds are? Please add thumbnail.CE Grim MDOn May 6, 2012, at 6:28 AM, StaceyF wrote: My headache has been with me non stop since Dec 30 2008. Never goes away just sometimes more bearable. It does not seem to correlate with the HTN as when it is normal, the headache can be at its worst. I thought maybe the low K after reading your stories here, but now I am finally in the 4's. Actually 4.4. Best it has been in 3 years and still the headache. I was hoping for relief when I got the K under control and have been on low sodium for 2 months. 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]

Sorry about the bad experience. Also know a Dr.Ken Jamerson there in Hypertension. He is more in HTN general but can get you to the right person and get you on the right track. Maybe. Better to try to work with your home team and get them up to speed.CE Grim MDOn May 5, 2012, at 7:03 PM, StaceyF wrote: Lansing, Michigan. You have recommended Dr. Greckin and I am trying to get referred. I saw Dr. Esfandiari at U of M already and she was of no help. That is why I am a bit hesitant to spend more money there. > > > > > > > > > > > > > > > > > > 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 sleep fine, Yes eyes checked, 3 or more brain mri, mra, sinus surgery in

thoughts that it was the cause of HA. Lumbar puncture. Multiple meds for the

treatment, all of which I have DC'd.

> > > > > > > > > > > >

> > > > > > > > > > > > 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 wear Prescription Eyeglasses are you 100% sure they have the right

Prescription. I had the Prescription once caused full time Headache Took months

and many Dr visits before I found out I had the glasses.

> > > > > > > > > > > > >

> > > > > > > > > > > > > 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 a neuro ophthalmologist look at my eyes, did field cut tests and also

checked my prescription 2 times in last 3 years. He says that the prescription

is good. I have intermittent blurred vision mostly in L eye so they were

thoughly checking for the cause. This seems to be the case with every doctor I

see.

> > > > > > > > > > > > > >

> > > > > > > > > > > > > > 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]

And the meds u are on are?Many can blur vision.May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 6, 2012, at 23:11, StaceyF <ssminnow@...> wrote:

I had a neuro ophthalmologist look at my eyes, did field cut tests and also checked my prescription 2 times in last 3 years. He says that the prescription is good. I have intermittent blurred vision mostly in L eye so they were thoughly checking for the cause. This seems to be the case with every doctor I see.

> > > > > > > > > > > > > >

> > > > > > > > > > > > > > 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 do know that, and they can cause headache but the only med I was on when

this all started 3.5 years ago was synthroid. That was it and I was staggering,

unable to write in patient charts because it was blurry and that is why I still

think there is a binned induced cause.

> > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > 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]

These are my current meds: levothyroxine. Klonopin, Wellbutrin, k, Vit D,

selenium, alpha lipoic acid, simvastatin, magnesium, nivigil, amatadine,

fioricet, spiro,.

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > 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]

What are your headaches like? When you say you have blurry vision what is this

like? Is it blurry in some parts and if so does the blurry part jump around?

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > 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]

My headache is 24/7 am aware it is there as soon as I become alert. It is drop

behind my eyes and goes over the top of my head like a Mohawk. Variable

intensity with no found reason for the variability. When the intensity is a

7/10 scale,I often get nausea associated with it. The blurred vision is present

daily and again worse at times where it is noticeable and other times

manageable. I do think it is either just my left eye or worse in left. Hard to

say because I have the need for glasses. Normally my right eye is worse vision

wise but since this blurry issue, the left eye is worse during those episodes.

It is like I am wearing someone else's glasses. It effects up close and far.

> > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > 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]

Did they start when u started CCB?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 7, 2012, at 17:06, StaceyF <ssminnow@...> wrote:

My headache is 24/7 am aware it is there as soon as I become alert. It is drop behind my eyes and goes over the top of my head like a Mohawk. Variable intensity with no found reason for the variability. When the intensity is a 7/10 scale,I often get nausea associated with it. The blurred vision is present daily and again worse at times where it is noticeable and other times manageable. I do think it is either just my left eye or worse in left. Hard to say because I have the need for glasses. Normally my right eye is worse vision wise but since this blurry issue, the left eye is worse during those episodes. It is like I am wearing someone else's glasses. It effects up close and far.

> > > > > > > > > > > > >

> > > > > > > > > > > > > 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!

> > > > > > > > > > > > >

> > > > > > > > > > > > > ….

> > > > > > > > > > > > >

> > > > > > > > > > > > >

> > > > > > > > > > > > > --- In

[Guest guest]

No, just started one morning. I did not have high blood pressure until then and

it went from 120/80 to 160/100 over the next 3 days.

Any medicine was added after the symptoms all started.

> > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > 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!

> > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > ÃÆ'¢â‚¬Â¦.

> > > > > > > > > > > > > > >

> > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > --- In

>

[Guest guest]

At the time on sudden increase in B/p any thing else happen? Like problem moving

or thinking?

> > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > 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!

> > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > ÃÆ'¢â‚¬Â¦.

> > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > --- In

> >

>

[Guest guest]

yes, i felt like I had the flu but not the respiratory issues (weak, fatigue and

heart palpitations), also off balance but not enough that I could not walk.

Lightheaded (like your head is not attached to your body, floating). I would

turn a corner while walking a patient (I am a physical therapist) and I would

fall into the wall sometimes. Also getting up from a chair I would lose my

balance. That has improved and the lightheaded feeling is not as frequent, but

I do get dizzy at times. As for thinking, since this started, I have the brain

fog. I have such terrible word finding problems, like every conversation. People

at work constantly finish my sentences for me.

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > 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!

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > ÃÆ'¢â‚¬Â¦.

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > --- In

> > >

> >

>

[Guest guest]

And you K is? Need thumbnail please. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 8, 2012, at 11:49, StaceyF <ssminnow@...> wrote:

yes, i felt like I had the flu but not the respiratory issues (weak, fatigue and heart palpitations), also off balance but not enough that I could not walk. Lightheaded (like your head is not attached to your body, floating). I would turn a corner while walking a patient (I am a physical therapist) and I would fall into the wall sometimes. Also getting up from a chair I would lose my balance. That has improved and the lightheaded feeling is not as frequent, but I do get dizzy at times. As for thinking, since this started, I have the brain fog. I have such terrible word finding problems, like every conversation. People at work constantly finish my sentences for me.

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > 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!

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > ÃÆ'¢â‚¬Â¦.

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > --- In

> > >

> >

>