Any thoughts

May 12, 2012

I have not been diagnosed. Still looking for answers. If no one has seen my

posts, I have low renin, normal Aldo, high deoxycoticosterone and deoxycortisol.

Sxs like everyone else. Also have hypothyroid, decreased immunity syndrome,

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.

Doing the low salt under 1500 and high K. Taking 40 meq k daily. Doc wants

some testing done ACTH Stimson needed to come off Spiro. That was last Sat.

Starting yesterday I have felt shaky inside but not out, my BP which is usually

160/90 when off BP meds is now running 95/55 to 112/71. I feel like I am going

to pass out but I don't. I feel weak and more fatigue. Heart rate is a little

higher than norm at 83-85. Anyone experience this or is it possible that

without the spiro I am losing too much K. I am nauseated and have no appetite

and know I am within my salt restriction. Any thoughts would be great.

May 12, 2012

Yes, doc told me to stop it. Had ARR 27. Did saline test and Aldo suppressed

that is why she looked into the deoxycortisol stuff. Only problem is took 2

months from saline test to see her and had to go on something to control my BP

as it was high. PCP put me back on the spiro and now she wants more testing so

I needed to come back off. This time my pressure was a little high early in the

week but last few days low on no meds. I have had it dip down and lots of

cardio work up and it comes back normal. Just trying to figure out why I feel

this way for 2-3 days. My episodes of low BP usually only last a few hours.

And yes, I find a place to lay down.

> >

> > I have not been diagnosed. Still looking for answers. If no one has seen

my posts, I have low renin, normal Aldo, high deoxycoticosterone and

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

immunity syndrome, 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. Doing the low salt under 1500 and high K. Taking 40 meq k

daily. Doc wants some testing done ACTH Stimson needed to come off Spiro. That

was last Sat. Starting yesterday I have felt shaky inside but not out, my BP

which is usually 160/90 when off BP meds is now running 95/55 to 112/71. I feel

like I am going to pass out but I don't. I feel weak and more fatigue. Heart

rate is a little higher than norm at 83-85. Anyone experience this or is it

possible that without the spiro I am losing too much K. I am nauseated and have

no appetite and know I am within my salt restriction. Any thoughts would be

great.

> >

>

May 12, 2012

Recommend u contact NIH And get it all done right in 10 days more or less. Response to Spiro is an excellent test that Aldo or also like hormones are the prob. Did u send us ur saline results?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 12, 2012, at 15:09, StaceyF <ssminnow@...> wrote:

Yes, doc told me to stop it. Had ARR 27. Did saline test and Aldo suppressed that is why she looked into the deoxycortisol stuff. Only problem is took 2 months from saline test to see her and had to go on something to control my BP as it was high. PCP put me back on the spiro and now she wants more testing so I needed to come back off. This time my pressure was a little high early in the week but last few days low on no meds. I have had it dip down and lots of cardio work up and it comes back normal. Just trying to figure out why I feel this way for 2-3 days. My episodes of low BP usually only last a few hours. And yes, I find a place to lay down.

> >

> > I have not been diagnosed. Still looking for answers. If no one has seen my posts, I have low renin, normal Aldo, high deoxycoticosterone and deoxycortisol. Sxs like everyone else. Also have hypothyroid, decreased immunity syndrome, 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. Doing the low salt under 1500 and high K. Taking 40 meq k daily. Doc wants some testing done ACTH Stimson needed to come off Spiro. That was last Sat. Starting yesterday I have felt shaky inside but not out, my BP which is usually 160/90 when off BP meds is now running 95/55 to 112/71. I feel like I am going to pass out but I don't. I feel weak and more fatigue. Heart rate is a little higher than norm at 83-85. Anyone experience this or is it possible that without the spiro I am losing too much K. I am nauseated and have no appetite and know I am within my salt restriction. Any

thoughts would be great.

> >

>

May 12, 2012

I had the fluctuations in my BP especially when I first was on spiro and before that my BP was always what would be classed as critically high - over 160/120 or that range, even on 5 meds, but not spiro. I asked the group early on Dr G suggested when I was early on in this it was my body adjusting and the barorecpetors etc learning to adjust to the new lower pressures thanks to the spiro. I think so because I have since adjusted and it stays low, but normal, if I DASH and I have been able to since go off the spiro - IF I DASH though AND control my K so I can exercise and get in better shape again.

A big meal, a couple birthday parties, and it's up. I never DASH fanatically. I mean I still enjoy things I used to enjoy except REALLY cut down on sodas and packaged foods, and I kind of cut out milk if that meant anything, but when I started getting serious at first it could get really low with alot of dizziness to the point of being very bothersome. Not now.

Our bodies are always talking to us when something is amiss, but they're also great at adapting so we can function every day. So they must adapt to the higher BP some and then it takes some doing to readapt when it gets back to a good range.

From: StaceyF <ssminnow@...>Subject: Any thoughtshyperaldosteronism Date: Saturday, May 12, 2012, 11:31 AM

I have not been diagnosed. Still looking for answers. If no one has seen my posts, I have low renin, normal Aldo, high deoxycoticosterone and deoxycortisol. Sxs like everyone else. Also have hypothyroid, decreased immunity syndrome, 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. Doing the low salt under 1500 and high K. Taking 40 meq k daily. Doc wants some testing done ACTH Stimson needed to come off Spiro. That was last Sat. Starting yesterday I have felt shaky inside but not out, my BP which is usually 160/90 when off BP meds is now running 95/55 to 112/71. I feel like I am going to pass out but I don't. I feel weak and more fatigue. Heart rate is a little higher than norm at 83-85. Anyone experience this or is it possible that without the spiro I am losing too much K. I am nauseated and have no appetite and know I am within my salt

restriction. Any thoughts would be great.

May 12, 2012

You might want to do the Undiagnosed Diseases Program at NIH.

http://rarediseases.info.nih.gov/Resources.aspx?PageID=31

> > > >

> > > > I have not been diagnosed. Still looking for answers. If no one has seen

my posts, I have low renin, normal Aldo, high deoxycoticosterone and

deoxycortisol. Sxs like everyone else. Also have hypothyroid, decreased immunity

syndrome, 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. Doing the low salt under 1500 and high K. Taking 40 meq k daily. Doc

wants some testing done ACTH Stimson needed to come off Spiro. That was last

Sat. Starting yesterday I have felt shaky inside but not out, my BP which is

usually 160/90 when off BP meds is now running 95/55 to 112/71. I feel like I am

going to pass out but I don't. I feel weak and more fatigue. Heart rate is a

little higher than norm at 83-85. Anyone experience this or is it possible that

without the spiro I am losing too much K. I am nauseated and have no appetite

and know I am within my salt restriction. Any thoughts would be great.

> > > >

> > >

> >

>

May 12, 2012

And the " kinda cut out milk " was for what reason? Onr of the first tests NIH

did on me was a bone density (DEXA) test. I passed with flying colors and they

credited low T causing high Estrogen, I credited 3 glasses of milk/day. Keep an

eye on it along with Vit D.

>

> From: StaceyF <ssminnow@...>

> Subject: Any thoughts

> hyperaldosteronism

> Date: Saturday, May 12, 2012, 11:31 AM

>

> Â

>

> I have not been diagnosed. Still looking for answers. If no one has seen my

posts, I have low renin, normal Aldo, high deoxycoticosterone and deoxycortisol.

Sxs like everyone else. Also have hypothyroid, decreased immunity syndrome, 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. Doing the low

salt under 1500 and high K. Taking 40 meq k daily. Doc wants some testing done

ACTH Stimson needed to come off Spiro. That was last Sat. Starting yesterday I

have felt shaky inside but not out, my BP which is usually 160/90 when off BP

meds is now running 95/55 to 112/71. I feel like I am going to pass out but I

don't. I feel weak and more fatigue. Heart rate is a little higher than norm at

83-85. Anyone experience this or is it possible that without the spiro I am

losing too much K. I am nauseated and have no appetite and know I am within my

salt restriction.

> Any thoughts would be great.

>

May 12, 2012

I suggest you go to our files and print " Aldosterone Causes of Hypertension "

and take it to her. It will suggest ways to control BP when off spiro in

addition to telling her about the various testing. (A little late for you but

maybe she won't try and kill the next PTN she sees w/PA!)

BTW when that big thump hits you in the chest you won't need to find a place to

lie down, God will take over (and stay with you if you are lucky!)

> > > > >

> > > > > I have not been diagnosed. Still looking for answers. If no one has

seen my posts, I have low renin, normal Aldo, high deoxycoticosterone and