Re: update Stacey

[Guest guest]

My post did not show, will try again, sorry if it is 2x.

Meds on during test were Spiro ( doc said would not interfere), nivigil,

Wellbutrin, simvastatin, magnesium, Vit d, k supplement, synthroid, alpha lipoic

acid, klonopin. I will add MEI info. Done 2 years ago and normal adrenals.

>

> > Just wanted to update you on my quest. Still no diagnosis. The

> > doctor did the ACTH stim test and checked only cortisol levels which

> > were 7.5 at 8 am, then 19.6 at 30 min and then 22.6 at 60 min. They

> > said it was normal. Have not gone to see the doc again yet. My

> > deoxycortisol previous to test was 99 (norm under52) and

> > deoxycorticosterone was 33 (norm less than 10). So to me, she did

> > not check the deoxycortisol or the ACTH to start with. Not sure it

> > gave me any other clues. It is obvious that the precursers to

> > cortisol and aldosterone are high but cortisol and aldosterone are

> > normal. Any advice to talk to the doctor about would be great. If

> > she writes me off, I am going to see about the NIH trial.

> > Good news, off Spiro and on DASH, very good at keeping the NA down

> > to under 1500mg and K to as close to 4700 as I can each day and my

> > BP is 114/70 avg. No BP meds at all. I have been feeling weak again

> > and palpitations, so not sure if my K is still normal. Has not been

> > tested in 2 months. Stacey

> > Thumbnail:

> > I have low renin, normal Aldo, low K, high deoxycoticosterone and

> > deoxycortisol. Sxs like everyone else. Also have hypothyroid,

> > hypogammaglobulinemia, 24/7 headache for 3.5 years. High BP but

> > labile, can go low and I had 2 near syncopal episodes. Last

> > treatment has been on Spiro and BP running 136/86. Taking 40 meq k

> > daily. Last Renin was less than .15 and Aldo was 12. Has not been

> > tested in many months. K was at 4.0 which was the highest in 3 years

> > last time it was tested. MRI 2 years ago and normal adrenals.

> >

> >

>

[Guest guest]

Hmm. Does he have any references to document that spiro will not interfere with ACTH testing or increase DOCA etc. I don't know of any.I do not know what nivigil is. On Jun 26, 2012, at 9:56 PM, StaceyF wrote: My post did not show, will try again, sorry if it is 2x. Meds on during test were Spiro ( doc said would not interfere), nivigil, Wellbutrin, simvastatin, magnesium, Vit d, k supplement, synthroid, alpha lipoic acid, klonopin. I will add MEI info. Done 2 years ago and normal adrenals. > > > Just wanted to update you on my quest. Still no diagnosis. The > > doctor did the ACTH stim test and checked only cortisol levels which > > were 7.5 at 8 am, then 19.6 at 30 min and then 22.6 at 60 min. They > > said it was normal. Have not gone to see the doc again yet. My > > deoxycortisol previous to test was 99 (norm under52) and > > deoxycorticosterone was 33 (norm less than 10). So to me, she did > > not check the deoxycortisol or the ACTH to start with. Not sure it > > gave me any other clues. It is obvious that the precursers to > > cortisol and aldosterone are high but cortisol and aldosterone are > > normal. Any advice to talk to the doctor about would be great. If > > she writes me off, I am going to see about the NIH trial. > > Good news, off Spiro and on DASH, very good at keeping the NA down > > to under 1500mg and K to as close to 4700 as I can each day and my > > BP is 114/70 avg. No BP meds at all. I have been feeling weak again > > and palpitations, so not sure if my K is still normal. Has not been > > tested in 2 months. Stacey > > Thumbnail: > > I have low renin, normal Aldo, low K, high deoxycoticosterone and > > deoxycortisol. Sxs like everyone else. Also have hypothyroid, > > hypogammaglobulinemia, 24/7 headache for 3.5 years. High BP but > > labile, can go low and I had 2 near syncopal episodes. Last > > treatment has been on Spiro and BP running 136/86. Taking 40 meq k > > daily. Last Renin was less than .15 and Aldo was 12. Has not been > > tested in many months. K was at 4.0 which was the highest in 3 years > > last time it was tested. MRI 2 years ago and normal adrenals. > > > > >