Re: Liddle Syndrome? Any other ideas?

[Guest guest]

His BP sure echoes how mine was - 5 years at least. But spiro worked, but I also started DASHing same time. He could have out salted the spiro and that's why it showed little response - IF it is PA -but the low potassium is a good clue. By outsalting we mean the regular diet he eats, and not the salt shaker. If he eats alot of processed/canned./ fast food he could have had too much salt for the spiro to work. Try it again if doc is okay but DASH diet at the same time (or do the rice diet as Dr G suggests for some for a start). I know how he must of felt and may have felt worse than he can tell you. What little you gave us sure sounds like PA. And did they check his aldo AFTER he started the spironolactone?

44yo male PA-C with PA, misdiagnosed 5 + years with average 160/120 daily and many ER visits (they never suspected it) and ALWAYS a low K on every lab for 5 years. Dxd PA by cardiologist after starting spiro - in cardio offce was 180/140 that day and 2 doses of spiro and DASH (even a little weak on that) was 120/80. Doing well on 12.5 and DASH

Subject: Liddle Syndrome? Any other ideas?To: hyperaldosteronism Date: Monday, November 7, 2011, 11:38 AM

I am new here and desperate for help. Husband discovered high BP 4yrs ago, his "normal" is about 175/120. Drug resistant, tried many. Renal CT, Echo, Adrenal CT, etc, etc all seem normal (adrenal CT showed slight enlargement). Many trips to the ER when BP shoots to 200/130+, responds only to nitro and very short lived. Endo suspected cushings (ruled out), then PA but aldosterone is low/normal. Took spiro while awaiting test results, potassium came up to low/normal but BP didn't move much. Chloride is high, sodium is high end of normal range, potassium low, cortisol low...waiting for renin results and ACTH stimulation test being done this week. Saline suppression test "not normal" according to Endo but I am not sure what the results were. They apparently ruled out PA. He is now asking a lot of questions about family history and mentioned possible genetic testing. We are scared. My husband has zero quality of life....describes the feeling as "thinks

he is red lining all of the time". Endo started Amaloride (and continued labetalol) 2 days ago. What else can we do to speed this up so he can start feeling better? Any ideas? If it is Liddle's, how long for Amaloride to start working? We have a 2yr old daughter and so we are freaking out about the possibility of a genetic condition. Thanks so much for any light you can shed!

[Guest guest]

Multiple tests before spiro showed low aldo... Endo says he is sure its not PA

but whatever it is mimics PA. He was on spiro for 2 weeks while test results

were outstanding...as soon as they came back the Endo changed it to Amaloride.

>

>

>

> Subject: Liddle Syndrome? Any other ideas?

> To: hyperaldosteronism

> Date: Monday, November 7, 2011, 11:38 AM

>

>

>

>  

>

>

>

> I am new here and desperate for help. Husband discovered high BP 4yrs ago, his

" normal " is about 175/120. Drug resistant, tried many. Renal CT, Echo, Adrenal

CT, etc, etc all seem normal (adrenal CT showed slight enlargement). Many trips

to the ER when BP shoots to 200/130+, responds only to nitro and very short

lived. Endo suspected cushings (ruled out), then PA but aldosterone is

low/normal. Took spiro while awaiting test results, potassium came up to

low/normal but BP didn't move much. Chloride is high, sodium is high end of

normal range, potassium low, cortisol low...waiting for renin results and ACTH

stimulation test being done this week. Saline suppression test " not normal "

according to Endo but I am not sure what the results were. They apparently ruled

out PA. He is now asking a lot of questions about family history and mentioned

possible genetic testing. We are scared. My husband has zero quality of

life....describes the feeling as " thinks he is

> red lining all of the time " . Endo started Amaloride (and continued labetalol)

2 days ago. What else can we do to speed this up so he can start feeling better?

Any ideas? If it is Liddle's, how long for Amaloride to start working? We have a

2yr old daughter and so we are freaking out about the possibility of a genetic

condition. Thanks so much for any light you can shed!

>

[Guest guest]

Blood pressure in general is inherited. By age 6 months babies with parents who have HTN have a higher BP than those with NT parents.But it sounds to me like you have early PA and a trail of spiro and DASH is indicated now. How much spiro was he on and how much salt was he eating. The most common inherited form of PA is GRA and I have followed 2 families with this and reported the first ever case of normokalemic GRA.But really need your numbers and the normal valuesHe can out salt spiro and Am so have endo check urine Na and K and creatinine to assess this diet intake of Na and K.CE Grim MD I am new here and desperate for help. Husband discovered high BP 4yrs ago, his "normal" is about 175/120. Drug resistant, tried many. Renal CT, Echo, Adrenal CT, etc, etc all seem normal (adrenal CT showed slight enlargement). Many trips to the ER when BP shoots to 200/130+, responds only to nitro and very short lived. Endo suspected cushings (ruled out), then PA but aldosterone is low/normal. Took spiro while awaiting test results, potassium came up to low/normal but BP didn't move much. Chloride is high, sodium is high end of normal range, potassium low, cortisol low...waiting for renin results and ACTH stimulation test being done this week. Saline suppression test "not normal" according to Endo but I am not sure what the results were. They apparently ruled out PA. He is now asking a lot of questions about family history and mentioned possible genetic testing. We are scared. My husband has zero quality of life....describes the feeling as "thinks he is red lining all of the time". Endo started Amaloride (and continued labetalol) 2 days ago. What else can we do to speed this up so he can start feeling better? Any ideas? If it is Liddle's, how long for Amaloride to start working? We have a 2yr old daughter and so we are freaking out about the possibility of a genetic condition. Thanks so much for any light you can shed!

[Guest guest]

We can only help you if we have lab numbers. Unless aldo and renin checked same

blood draw it is impossible to to know if one has PA. Many have normal aldo and

still have PA. Many have been told by Endo they don't have PA.

> >

> >

> > From: MaiaOlive <ngairerees@>

> > Subject: Liddle Syndrome? Any other ideas?

> > To: hyperaldosteronism

> > Date: Monday, November 7, 2011, 11:38 AM

> >

> >

> >

> >  

> >

> >

> >

> > I am new here and desperate for help. Husband discovered high BP 4yrs ago,

his " normal " is about 175/120. Drug resistant, tried many. Renal CT, Echo,

Adrenal CT, etc, etc all seem normal (adrenal CT showed slight enlargement).

Many trips to the ER when BP shoots to 200/130+, responds only to nitro and very

short lived. Endo suspected cushings (ruled out), then PA but aldosterone is

low/normal. Took spiro while awaiting test results, potassium came up to

low/normal but BP didn't move much. Chloride is high, sodium is high end of

normal range, potassium low, cortisol low...waiting for renin results and ACTH

stimulation test being done this week. Saline suppression test " not normal "

according to Endo but I am not sure what the results were. They apparently ruled

out PA. He is now asking a lot of questions about family history and mentioned

possible genetic testing. We are scared. My husband has zero quality of

life....describes the feeling as " thinks he is

> > red lining all of the time " . Endo started Amaloride (and continued

labetalol) 2 days ago. What else can we do to speed this up so he can start

feeling better? Any ideas? If it is Liddle's, how long for Amaloride to start

working? We have a 2yr old daughter and so we are freaking out about the

possibility of a genetic condition. Thanks so much for any light you can shed!

> >

>

[Guest guest]

Thanks, I will wait until the ACTH results are back and then ask for copies of

everything. I noticed your profile said retired...do you still hire out for

consults? We live in British Columbia, Canada. There is only one Endo in our

town. While he certainly seems thorough with all of the tests he does we still

feel like another opinion might help. The Endo is certain this not PA after the

saline suppression test. He started Spiro after the test but before the results

were back. Not sure of what the spiro dose was, he was started on it while

admitted to hospital and was on DASH there. At home he doesn't add salt to

anything but eats a moderate amount of packaged foods. GRA is not something I

have read much about....will check it out. Thanks!

>

> Blood pressure in general is inherited. By age 6 months babies with

> parents who have HTN have a higher BP than those with NT parents.

>

> But it sounds to me like you have early PA and a trail of spiro and

> DASH is indicated now. How much spiro was he on and how much salt was

> he eating.

>

> The most common inherited form of PA is GRA and I have followed 2

> families with this and reported the first ever case of normokalemic GRA.

>

> But really need your numbers and the normal values

>

> He can out salt spiro and Am so have endo check urine Na and K and

> creatinine to assess this diet intake of Na and K.

>

> CE Grim MD

> > I am new here and desperate for help. Husband discovered high BP

> > 4yrs ago, his " normal " is about 175/120. Drug resistant, tried many.

> > Renal CT, Echo, Adrenal CT, etc, etc all seem normal (adrenal CT

> > showed slight enlargement). Many trips to the ER when BP shoots to

> > 200/130+, responds only to nitro and very short lived. Endo

> > suspected cushings (ruled out), then PA but aldosterone is low/

> > normal. Took spiro while awaiting test results, potassium came up to

> > low/normal but BP didn't move much. Chloride is high, sodium is high

> > end of normal range, potassium low, cortisol low...waiting for renin

> > results and ACTH stimulation test being done this week. Saline

> > suppression test " not normal " according to Endo but I am not sure

> > what the results were. They apparently ruled out PA. He is now

> > asking a lot of questions about family history and mentioned

> > possible genetic testing. We are scared. My husband has zero quality

> > of life....describes the feeling as " thinks he is red lining all of

> > the time " . Endo started Amaloride (and continued labetalol) 2 days

> > ago. What else can we do to speed this up so he can start feeling

> > better? Any ideas? If it is Liddle's, how long for Amaloride to

> > start working? We have a 2yr old daughter and so we are freaking out

> > about the possibility of a genetic condition. Thanks so much for any

> > light you can shed!

> >

> >

>

[Guest guest]

Have you and team read my evolution article yet. May help. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

Thanks, I will wait until the ACTH results are back and then ask for copies of everything. I noticed your profile said retired...do you still hire out for consults? We live in British Columbia, Canada. There is only one Endo in our town. While he certainly seems thorough with all of the tests he does we still feel like another opinion might help. The Endo is certain this not PA after the saline suppression test. He started Spiro after the test but before the results were back. Not sure of what the spiro dose was, he was started on it while admitted to hospital and was on DASH there. At home he doesn't add salt to anything but eats a moderate amount of packaged foods. GRA is not something I have read much about....will check it out. Thanks!

>

> Blood pressure in general is inherited. By age 6 months babies with

> parents who have HTN have a higher BP than those with NT parents.

>

> But it sounds to me like you have early PA and a trail of spiro and

> DASH is indicated now. How much spiro was he on and how much salt was

> he eating.

>

> The most common inherited form of PA is GRA and I have followed 2

> families with this and reported the first ever case of normokalemic GRA.

>

> But really need your numbers and the normal values

>

> He can out salt spiro and Am so have endo check urine Na and K and

> creatinine to assess this diet intake of Na and K.

>

> CE Grim MD

> > I am new here and desperate for help. Husband discovered high BP

> > 4yrs ago, his "normal" is about 175/120. Drug resistant, tried many.

> > Renal CT, Echo, Adrenal CT, etc, etc all seem normal (adrenal CT

> > showed slight enlargement). Many trips to the ER when BP shoots to

> > 200/130+, responds only to nitro and very short lived. Endo

> > suspected cushings (ruled out), then PA but aldosterone is low/

> > normal. Took spiro while awaiting test results, potassium came up to

> > low/normal but BP didn't move much. Chloride is high, sodium is high

> > end of normal range, potassium low, cortisol low...waiting for renin

> > results and ACTH stimulation test being done this week. Saline

> > suppression test "not normal" according to Endo but I am not sure

> > what the results were. They apparently ruled out PA. He is now

> > asking a lot of questions about family history and mentioned

> > possible genetic testing. We are scared. My husband has zero quality

> > of life....describes the feeling as "thinks he is red lining all of

> > the time". Endo started Amaloride (and continued labetalol) 2 days

> > ago. What else can we do to speed this up so he can start feeling

> > better? Any ideas? If it is Liddle's, how long for Amaloride to

> > start working? We have a 2yr old daughter and so we are freaking out

> > about the possibility of a genetic condition. Thanks so much for any

> > light you can shed!

> >

> >

>

[Guest guest]

" low aldo " doesn't mean much to us. What are the numbers and normal ranges? Where is his renin? Is he DASHing? Does it help? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of MaiaOlive Multiple tests before spiro showed low aldo... Endo says he is sure its not PA but whatever it is mimics PA. He was on spiro for 2 weeks while test results were outstanding...as soon as they came back the Endo changed it to Amaloride..

[Guest guest]

Hi,

Some additional test results back... and Endo is saying its not PA so I guess we

are back at square one...

Day of Saline Suppression Test:

Baseline 9:30am

Renin <.05 ng/L/sec

Aldo <50 pmol/L

Am Cortisol 135 nmol/L (range 170-650)

Potassium 4.4 mmol/L (range 3.5-5)

1:35pm draw

Renin <.05 ng/L/sec

Aldo 109 pmol/L

Random Cortisol 274 nmol/L

Potassium 3.6 (range 3.5-5)

I have zero understanding of what these test results mean but his results were

apparently reviewed by another hospital as well. Yes, we read you

article....symptom wise we were convinced PA was the answer but I guess the

blood work says otherwise?

Thanks!

> > >

> > > Blood pressure in general is inherited. By age 6 months babies with

> > > parents who have HTN have a higher BP than those with NT parents.

> > >

> > > But it sounds to me like you have early PA and a trail of spiro and

> > > DASH is indicated now. How much spiro was he on and how much salt was

> > > he eating.

> > >

> > > The most common inherited form of PA is GRA and I have followed 2

> > > families with this and reported the first ever case of normokalemic GRA.

> > >

> > > But really need your numbers and the normal values

> > >

> > > He can out salt spiro and Am so have endo check urine Na and K and

> > > creatinine to assess this diet intake of Na and K.

> > >

> > > CE Grim MD

> > > > I am new here and desperate for help. Husband discovered high BP

> > > > 4yrs ago, his " normal " is about 175/120. Drug resistant, tried many.

> > > > Renal CT, Echo, Adrenal CT, etc, etc all seem normal (adrenal CT

> > > > showed slight enlargement). Many trips to the ER when BP shoots to

> > > > 200/130+, responds only to nitro and very short lived. Endo

> > > > suspected cushings (ruled out), then PA but aldosterone is low/

> > > > normal. Took spiro while awaiting test results, potassium came up to

> > > > low/normal but BP didn't move much. Chloride is high, sodium is high

> > > > end of normal range, potassium low, cortisol low...waiting for renin

> > > > results and ACTH stimulation test being done this week. Saline

> > > > suppression test " not normal " according to Endo but I am not sure

> > > > what the results were. They apparently ruled out PA. He is now

> > > > asking a lot of questions about family history and mentioned

> > > > possible genetic testing. We are scared. My husband has zero quality

> > > > of life....describes the feeling as " thinks he is red lining all of

> > > > the time " . Endo started Amaloride (and continued labetalol) 2 days

> > > > ago. What else can we do to speed this up so he can start feeling

> > > > better? Any ideas? If it is Liddle's, how long for Amaloride to

> > > > start working? We have a 2yr old daughter and so we are freaking out

> > > > about the possibility of a genetic condition. Thanks so much for any

> > > > light you can shed!

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

you have PA I say but need normal values for this lab.CE Grim MD Hi, Some additional test results back... and Endo is saying its not PA so I guess we are back at square one... Day of Saline Suppression Test: Baseline 9:30am Renin <.05 ng/L/sec Aldo <50 pmol/L Am Cortisol 135 nmol/L (range 170-650) Potassium 4.4 mmol/L (range 3.5-5) 1:35pm draw Renin <.05 ng/L/sec Aldo 109 pmol/L Random Cortisol 274 nmol/L Potassium 3.6 (range 3.5-5) I have zero understanding of what these test results mean but his results were apparently reviewed by another hospital as well. Yes, we read you article....symptom wise we were convinced PA was the answer but I guess the blood work says otherwise? Thanks! > > > > > > Blood pressure in general is inherited. By age 6 months babies with > > > parents who have HTN have a higher BP than those with NT parents. > > > > > > But it sounds to me like you have early PA and a trail of spiro and > > > DASH is indicated now. How much spiro was he on and how much salt was > > > he eating. > > > > > > The most common inherited form of PA is GRA and I have followed 2 > > > families with this and reported the first ever case of normokalemic GRA. > > > > > > But really need your numbers and the normal values > > > > > > He can out salt spiro and Am so have endo check urine Na and K and > > > creatinine to assess this diet intake of Na and K. > > > > > > CE Grim MD > > > > I am new here and desperate for help. Husband discovered high BP > > > > 4yrs ago, his "normal" is about 175/120. Drug resistant, tried many. > > > > Renal CT, Echo, Adrenal CT, etc, etc all seem normal (adrenal CT > > > > showed slight enlargement). Many trips to the ER when BP shoots to > > > > 200/130+, responds only to nitro and very short lived. Endo > > > > suspected cushings (ruled out), then PA but aldosterone is low/ > > > > normal. Took spiro while awaiting test results, potassium came up to > > > > low/normal but BP didn't move much. Chloride is high, sodium is high > > > > end of normal range, potassium low, cortisol low...waiting for renin > > > > results and ACTH stimulation test being done this week. Saline > > > > suppression test "not normal" according to Endo but I am not sure > > > > what the results were. They apparently ruled out PA. He is now > > > > asking a lot of questions about family history and mentioned > > > > possible genetic testing. We are scared. My husband has zero quality > > > > of life....describes the feeling as "thinks he is red lining all of > > > > the time". Endo started Amaloride (and continued labetalol) 2 days > > > > ago. What else can we do to speed this up so he can start feeling > > > > better? Any ideas? If it is Liddle's, how long for Amaloride to > > > > start working? We have a 2yr old daughter and so we are freaking out > > > > about the possibility of a genetic condition. Thanks so much for any > > > > light you can shed! > > > > > > > > > > > > > > > >

[Guest guest]

When I reported my renin at 0.1 I was told I had " low renin HTN " . Dr. Grim said

this was early PA and treated the same. Ask him specifically why renin is so

low. Don't know your story or what meds, if any, you are on.

- 65 yo super ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank

pain. Treating with Meds. And DASH. . Current BP(last week ave): 131/76 HR 60

Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, and PTSD.

Meds: Duloxetine hcl 80 MG, Metoprolol Tartrate 200 MG, 81mg asprin, Metformin

2000MG and Spironolactone 50 MG.

> > > >

> > > > Blood pressure in general is inherited. By age 6 months babies with

> > > > parents who have HTN have a higher BP than those with NT parents.

> > > >

> > > > But it sounds to me like you have early PA and a trail of spiro and

> > > > DASH is indicated now. How much spiro was he on and how much salt was

> > > > he eating.

> > > >

> > > > The most common inherited form of PA is GRA and I have followed 2

> > > > families with this and reported the first ever case of normokalemic GRA.

> > > >

> > > > But really need your numbers and the normal values

> > > >

> > > > He can out salt spiro and Am so have endo check urine Na and K and

> > > > creatinine to assess this diet intake of Na and K.

> > > >

> > > > CE Grim MD

> > > > > I am new here and desperate for help. Husband discovered high BP

> > > > > 4yrs ago, his " normal " is about 175/120. Drug resistant, tried many.

> > > > > Renal CT, Echo, Adrenal CT, etc, etc all seem normal (adrenal CT

> > > > > showed slight enlargement). Many trips to the ER when BP shoots to

> > > > > 200/130+, responds only to nitro and very short lived. Endo

> > > > > suspected cushings (ruled out), then PA but aldosterone is low/

> > > > > normal. Took spiro while awaiting test results, potassium came up to

> > > > > low/normal but BP didn't move much. Chloride is high, sodium is high

> > > > > end of normal range, potassium low, cortisol low...waiting for renin

> > > > > results and ACTH stimulation test being done this week. Saline

> > > > > suppression test " not normal " according to Endo but I am not sure

> > > > > what the results were. They apparently ruled out PA. He is now

> > > > > asking a lot of questions about family history and mentioned

> > > > > possible genetic testing. We are scared. My husband has zero quality

> > > > > of life....describes the feeling as " thinks he is red lining all of

> > > > > the time " . Endo started Amaloride (and continued labetalol) 2 days

> > > > > ago. What else can we do to speed this up so he can start feeling

> > > > > better? Any ideas? If it is Liddle's, how long for Amaloride to

> > > > > start working? We have a 2yr old daughter and so we are freaking out

> > > > > about the possibility of a genetic condition. Thanks so much for any

> > > > > light you can shed!

> > > > >

> > > > >

> > > >

> > >

> > >

> >

>

[Guest guest]

How can this not be PA? Aldosterone to Renin ratio is in the thousands!Sent From My iPhone Farah

Hi,

Some additional test results back... and Endo is saying its not PA so I guess we are back at square one...

Day of Saline Suppression Test:

Baseline 9:30am

Renin <.05 ng/L/sec

Aldo <50 pmol/L

Am Cortisol 135 nmol/L (range 170-650)

Potassium 4.4 mmol/L (range 3.5-5)

1:35pm draw

Renin <.05 ng/L/sec

Aldo 109 pmol/L

Random Cortisol 274 nmol/L

Potassium 3.6 (range 3.5-5)

I have zero understanding of what these test results mean but his results were apparently reviewed by another hospital as well. Yes, we read you article....symptom wise we were convinced PA was the answer but I guess the blood work says otherwise?

Thanks!

> > >

> > > Blood pressure in general is inherited. By age 6 months babies with

> > > parents who have HTN have a higher BP than those with NT parents.

> > >

> > > But it sounds to me like you have early PA and a trail of spiro and

> > > DASH is indicated now. How much spiro was he on and how much salt was

> > > he eating.

> > >

> > > The most common inherited form of PA is GRA and I have followed 2

> > > families with this and reported the first ever case of normokalemic GRA.

> > >

> > > But really need your numbers and the normal values

> > >

> > > He can out salt spiro and Am so have endo check urine Na and K and

> > > creatinine to assess this diet intake of Na and K.

> > >

> > > CE Grim MD

> > > > I am new here and desperate for help. Husband discovered high BP

> > > > 4yrs ago, his "normal" is about 175/120. Drug resistant, tried many.

> > > > Renal CT, Echo, Adrenal CT, etc, etc all seem normal (adrenal CT

> > > > showed slight enlargement). Many trips to the ER when BP shoots to

> > > > 200/130+, responds only to nitro and very short lived. Endo

> > > > suspected cushings (ruled out), then PA but aldosterone is low/

> > > > normal. Took spiro while awaiting test results, potassium came up to

> > > > low/normal but BP didn't move much. Chloride is high, sodium is high

> > > > end of normal range, potassium low, cortisol low...waiting for renin

> > > > results and ACTH stimulation test being done this week. Saline

> > > > suppression test "not normal" according to Endo but I am not sure

> > > > what the results were. They apparently ruled out PA. He is now

> > > > asking a lot of questions about family history and mentioned

> > > > possible genetic testing. We are scared. My husband has zero quality

> > > > of life....describes the feeling as "thinks he is red lining all of

> > > > the time". Endo started Amaloride (and continued labetalol) 2 days

> > > > ago. What else can we do to speed this up so he can start feeling

> > > > better? Any ideas? If it is Liddle's, how long for Amaloride to

> > > > start working? We have a 2yr old daughter and so we are freaking out

> > > > about the possibility of a genetic condition. Thanks so much for any

> > > > light you can shed!

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

I am not sure these are the normal values you need? (new to this!)

The report says:

Reference on unrestricted salt,

Supine: 30-415 pmol/L

Upright: 70-660 pmol/L

Posture at time of collection unknown

Plasma renin reference range: Unrestriced salt

Supine: less than .28ng/L/s

Upright: .05? 0.55 ng/Ls

There are also comments from an MD (not our Endo) that say:

" The aldosterone remains low but is significantly higher than the baseline

aldosterone. Suppressed aldosterone in a patient who also had a saline

suppression test later the same day. Both this result and saline suppression

value indicate that the patient does not have primary aldosteronism.

New method, Performed by Mass Spectrometry at St 's Hospital "

Please forgive my very uneducated question....but am I understanding correctly

that it can still be PA if aldo is low, so long as the ratio to renin is high?

He was off all meds for 6 weeks prior to this test.

Thanks!

> > > > >

> > > > > Blood pressure in general is inherited. By age 6 months babies

> > with

> > > > > parents who have HTN have a higher BP than those with NT

> > parents.

> > > > >

> > > > > But it sounds to me like you have early PA and a trail of

> > spiro and

> > > > > DASH is indicated now. How much spiro was he on and how much

> > salt was

> > > > > he eating.

> > > > >

> > > > > The most common inherited form of PA is GRA and I have

> > followed 2

> > > > > families with this and reported the first ever case of

> > normokalemic GRA.

> > > > >

> > > > > But really need your numbers and the normal values

> > > > >

> > > > > He can out salt spiro and Am so have endo check urine Na and K

> > and

> > > > > creatinine to assess this diet intake of Na and K.

> > > > >

> > > > > CE Grim MD

> > > > > > I am new here and desperate for help. Husband discovered

> > high BP

> > > > > > 4yrs ago, his " normal " is about 175/120. Drug resistant,

> > tried many.

> > > > > > Renal CT, Echo, Adrenal CT, etc, etc all seem normal

> > (adrenal CT

> > > > > > showed slight enlargement). Many trips to the ER when BP

> > shoots to

> > > > > > 200/130+, responds only to nitro and very short lived. Endo

> > > > > > suspected cushings (ruled out), then PA but aldosterone is

> > low/

> > > > > > normal. Took spiro while awaiting test results, potassium

> > came up to

> > > > > > low/normal but BP didn't move much. Chloride is high, sodium

> > is high

> > > > > > end of normal range, potassium low, cortisol low...waiting

> > for renin

> > > > > > results and ACTH stimulation test being done this week. Saline

> > > > > > suppression test " not normal " according to Endo but I am not

> > sure

> > > > > > what the results were. They apparently ruled out PA. He is now

> > > > > > asking a lot of questions about family history and mentioned

> > > > > > possible genetic testing. We are scared. My husband has zero

> > quality

> > > > > > of life....describes the feeling as " thinks he is red lining

> > all of

> > > > > > the time " . Endo started Amaloride (and continued labetalol)

> > 2 days

> > > > > > ago. What else can we do to speed this up so he can start

> > feeling

> > > > > > better? Any ideas? If it is Liddle's, how long for Amaloride

> > to

> > > > > > start working? We have a 2yr old daughter and so we are

> > freaking out

> > > > > > about the possibility of a genetic condition. Thanks so much

> > for any

> > > > > > light you can shed!

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Forgot to mention this... Endo seemed to think it was of importance??

24hr BP monitor showed BP significantly decreases while sleeping. It doesn't

drop to normal but 20-30pts

> > > > >

> > > > > Blood pressure in general is inherited. By age 6 months babies

> > with

> > > > > parents who have HTN have a higher BP than those with NT

> > parents.

> > > > >

> > > > > But it sounds to me like you have early PA and a trail of

> > spiro and

> > > > > DASH is indicated now. How much spiro was he on and how much

> > salt was

> > > > > he eating.

> > > > >

> > > > > The most common inherited form of PA is GRA and I have

> > followed 2

> > > > > families with this and reported the first ever case of

> > normokalemic GRA.

> > > > >

> > > > > But really need your numbers and the normal values

> > > > >

> > > > > He can out salt spiro and Am so have endo check urine Na and K

> > and

> > > > > creatinine to assess this diet intake of Na and K.

> > > > >

> > > > > CE Grim MD

> > > > > > I am new here and desperate for help. Husband discovered

> > high BP

> > > > > > 4yrs ago, his " normal " is about 175/120. Drug resistant,

> > tried many.

> > > > > > Renal CT, Echo, Adrenal CT, etc, etc all seem normal

> > (adrenal CT

> > > > > > showed slight enlargement). Many trips to the ER when BP

> > shoots to

> > > > > > 200/130+, responds only to nitro and very short lived. Endo

> > > > > > suspected cushings (ruled out), then PA but aldosterone is

> > low/

> > > > > > normal. Took spiro while awaiting test results, potassium

> > came up to

> > > > > > low/normal but BP didn't move much. Chloride is high, sodium

> > is high

> > > > > > end of normal range, potassium low, cortisol low...waiting

> > for renin

> > > > > > results and ACTH stimulation test being done this week. Saline

> > > > > > suppression test " not normal " according to Endo but I am not

> > sure

> > > > > > what the results were. They apparently ruled out PA. He is now

> > > > > > asking a lot of questions about family history and mentioned

> > > > > > possible genetic testing. We are scared. My husband has zero

> > quality

> > > > > > of life....describes the feeling as " thinks he is red lining

> > all of

> > > > > > the time " . Endo started Amaloride (and continued labetalol)

> > 2 days

> > > > > > ago. What else can we do to speed this up so he can start

> > feeling

> > > > > > better? Any ideas? If it is Liddle's, how long for Amaloride

> > to

> > > > > > start working? We have a 2yr old daughter and so we are

> > freaking out

> > > > > > about the possibility of a genetic condition. Thanks so much

> > for any

> > > > > > light you can shed!

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

If I understand it right Saline Suppression test is done to confirm if one has

PA. If you don't have PA this test makes aldo very low. Since the test results

posted here show not only did aldo suppress but increased a lot. As renin was

low and didn't increase would think this would confirm PA.

> > > > >

> > > > > Blood pressure in general is inherited. By age 6 months babies with

> > > > > parents who have HTN have a higher BP than those with NT parents.

> > > > >

> > > > > But it sounds to me like you have early PA and a trail of spiro and

> > > > > DASH is indicated now. How much spiro was he on and how much salt was

> > > > > he eating.

> > > > >

> > > > > The most common inherited form of PA is GRA and I have followed 2

> > > > > families with this and reported the first ever case of normokalemic

GRA.

> > > > >

> > > > > But really need your numbers and the normal values

> > > > >

> > > > > He can out salt spiro and Am so have endo check urine Na and K and

> > > > > creatinine to assess this diet intake of Na and K.

> > > > >

> > > > > CE Grim MD

> > > > > > I am new here and desperate for help. Husband discovered high BP

> > > > > > 4yrs ago, his " normal " is about 175/120. Drug resistant, tried many.

> > > > > > Renal CT, Echo, Adrenal CT, etc, etc all seem normal (adrenal CT

> > > > > > showed slight enlargement). Many trips to the ER when BP shoots to

> > > > > > 200/130+, responds only to nitro and very short lived. Endo

> > > > > > suspected cushings (ruled out), then PA but aldosterone is low/

> > > > > > normal. Took spiro while awaiting test results, potassium came up to

> > > > > > low/normal but BP didn't move much. Chloride is high, sodium is high

> > > > > > end of normal range, potassium low, cortisol low...waiting for renin

> > > > > > results and ACTH stimulation test being done this week. Saline

> > > > > > suppression test " not normal " according to Endo but I am not sure

> > > > > > what the results were. They apparently ruled out PA. He is now

> > > > > > asking a lot of questions about family history and mentioned

> > > > > > possible genetic testing. We are scared. My husband has zero quality

> > > > > > of life....describes the feeling as " thinks he is red lining all of

> > > > > > the time " . Endo started Amaloride (and continued labetalol) 2 days

> > > > > > ago. What else can we do to speed this up so he can start feeling

> > > > > > better? Any ideas? If it is Liddle's, how long for Amaloride to

> > > > > > start working? We have a 2yr old daughter and so we are freaking out

> > > > > > about the possibility of a genetic condition. Thanks so much for any

> > > > > > light you can shed!

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Both renin and aldo should be suppressed by saline. But the problem is we do not know their normal values. Yet?And if PA most will pee a lot during the saline infusion. Called Dr. Grim's pee test. If over 1.5 L most likely PA.CE Grim. On Nov 10, 2011, at 9:54 AM, Francis Bill SUSPECTED PA wrote: If I understand it right Saline Suppression test is done to confirm if one has PA. If you don't have PA this test makes aldo very low. Since the test results posted here show not only did aldo suppress but increased a lot. As renin was low and didn't increase would think this would confirm PA. > > > > > > > > > > Blood pressure in general is inherited. By age 6 months babies with > > > > > parents who have HTN have a higher BP than those with NT parents. > > > > > > > > > > But it sounds to me like you have early PA and a trail of spiro and > > > > > DASH is indicated now. How much spiro was he on and how much salt was > > > > > he eating. > > > > > > > > > > The most common inherited form of PA is GRA and I have followed 2 > > > > > families with this and reported the first ever case of normokalemic GRA. > > > > > > > > > > But really need your numbers and the normal values > > > > > > > > > > He can out salt spiro and Am so have endo check urine Na and K and > > > > > creatinine to assess this diet intake of Na and K. > > > > > > > > > > CE Grim MD > > > > > > I am new here and desperate for help. Husband discovered high BP > > > > > > 4yrs ago, his "normal" is about 175/120. Drug resistant, tried many. > > > > > > Renal CT, Echo, Adrenal CT, etc, etc all seem normal (adrenal CT > > > > > > showed slight enlargement). Many trips to the ER when BP shoots to > > > > > > 200/130+, responds only to nitro and very short lived. Endo > > > > > > suspected cushings (ruled out), then PA but aldosterone is low/ > > > > > > normal. Took spiro while awaiting test results, potassium came up to > > > > > > low/normal but BP didn't move much. Chloride is high, sodium is high > > > > > > end of normal range, potassium low, cortisol low...waiting for renin > > > > > > results and ACTH stimulation test being done this week. Saline > > > > > > suppression test "not normal" according to Endo but I am not sure > > > > > > what the results were. They apparently ruled out PA. He is now > > > > > > asking a lot of questions about family history and mentioned > > > > > > possible genetic testing. We are scared. My husband has zero quality > > > > > > of life....describes the feeling as "thinks he is red lining all of > > > > > > the time". Endo started Amaloride (and continued labetalol) 2 days > > > > > > ago. What else can we do to speed this up so he can start feeling > > > > > > better? Any ideas? If it is Liddle's, how long for Amaloride to > > > > > > start working? We have a 2yr old daughter and so we are freaking out > > > > > > about the possibility of a genetic condition. Thanks so much for any > > > > > > light you can shed! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

[Guest guest]

Well the aldo is pretty low at baseline but increased with the saline but need to know what is normal for post saline values.Very unusual. Note this is being done by a new assay method. Always makes me nervous when the new method does not seem to reflect what should have happened. If the aldo was at the lower limit of detectability then there is more variation in the assay.My recommendation would be to DASH to see if anything such as BP or K or other problems get better. But still suspect high salt intake.Does he remember how much he peed during the salt infusion?CE Grim. I am not sure these are the normal values you need? (new to this!) The report says: Reference on unrestricted salt, Supine: 30-415 pmol/L Upright: 70-660 pmol/L Posture at time of collection unknown Plasma renin reference range: Unrestriced salt Supine: less than .28ng/L/s Upright: .05? 0.55 ng/Ls There are also comments from an MD (not our Endo) that say: "The aldosterone remains low but is significantly higher than the baseline aldosterone. Suppressed aldosterone in a patient who also had a saline suppression test later the same day. Both this result and saline suppression value indicate that the patient does not have primary aldosteronism. New method, Performed by Mass Spectrometry at St 's Hospital" Please forgive my very uneducated question....but am I understanding correctly that it can still be PA if aldo is low, so long as the ratio to renin is high? He was off all meds for 6 weeks prior to this test. Thanks! > > > > > > > > > > Blood pressure in general is inherited. By age 6 months babies > > with > > > > > parents who have HTN have a higher BP than those with NT > > parents. > > > > > > > > > > But it sounds to me like you have early PA and a trail of > > spiro and > > > > > DASH is indicated now. How much spiro was he on and how much > > salt was > > > > > he eating. > > > > > > > > > > The most common inherited form of PA is GRA and I have > > followed 2 > > > > > families with this and reported the first ever case of > > normokalemic GRA. > > > > > > > > > > But really need your numbers and the normal values > > > > > > > > > > He can out salt spiro and Am so have endo check urine Na and K > > and > > > > > creatinine to assess this diet intake of Na and K. > > > > > > > > > > CE Grim MD > > > > > > I am new here and desperate for help. Husband discovered > > high BP > > > > > > 4yrs ago, his "normal" is about 175/120. Drug resistant, > > tried many. > > > > > > Renal CT, Echo, Adrenal CT, etc, etc all seem normal > > (adrenal CT > > > > > > showed slight enlargement). Many trips to the ER when BP > > shoots to > > > > > > 200/130+, responds only to nitro and very short lived. Endo > > > > > > suspected cushings (ruled out), then PA but aldosterone is > > low/ > > > > > > normal. Took spiro while awaiting test results, potassium > > came up to > > > > > > low/normal but BP didn't move much. Chloride is high, sodium > > is high > > > > > > end of normal range, potassium low, cortisol low...waiting > > for renin > > > > > > results and ACTH stimulation test being done this week. Saline > > > > > > suppression test "not normal" according to Endo but I am not > > sure > > > > > > what the results were. They apparently ruled out PA. He is now > > > > > > asking a lot of questions about family history and mentioned > > > > > > possible genetic testing. We are scared. My husband has zero > > quality > > > > > > of life....describes the feeling as "thinks he is red lining > > all of > > > > > > the time". Endo started Amaloride (and continued labetalol) > > 2 days > > > > > > ago. What else can we do to speed this up so he can start > > feeling > > > > > > better? Any ideas? If it is Liddle's, how long for Amaloride > > to > > > > > > start working? We have a 2yr old daughter and so we are > > freaking out > > > > > > about the possibility of a genetic condition. Thanks so much > > for any > > > > > > light you can shed! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

[Guest guest]

Thanks, the results form had the same reference ranges listed pre and post. He

says he didn't pee during the test but really had to go by the end. He was also

kept there for a while as his BP went from 148/105 at the start to 185/121 at

the end and he developed a severe headache.

He has been on Amaloride for a week now and his BP has come down to about

150/100....that is about a 20pt drop on both numbers. Crossing our fingers!

Will read up on DASH and improve salt intake, he has cut back but could be more

strict with it. Thanks so much!

> > > > > > >

> > > > > > > Blood pressure in general is inherited. By age 6 months

> > babies

> > > > with

> > > > > > > parents who have HTN have a higher BP than those with NT

> > > > parents.

> > > > > > >

> > > > > > > But it sounds to me like you have early PA and a trail of

> > > > spiro and

> > > > > > > DASH is indicated now. How much spiro was he on and how much

> > > > salt was

> > > > > > > he eating.

> > > > > > >

> > > > > > > The most common inherited form of PA is GRA and I have

> > > > followed 2

> > > > > > > families with this and reported the first ever case of

> > > > normokalemic GRA.

> > > > > > >

> > > > > > > But really need your numbers and the normal values

> > > > > > >

> > > > > > > He can out salt spiro and Am so have endo check urine Na

> > and K

> > > > and

> > > > > > > creatinine to assess this diet intake of Na and K.

> > > > > > >

> > > > > > > CE Grim MD

> > > > > > > > I am new here and desperate for help. Husband discovered

> > > > high BP

> > > > > > > > 4yrs ago, his " normal " is about 175/120. Drug resistant,

> > > > tried many.

> > > > > > > > Renal CT, Echo, Adrenal CT, etc, etc all seem normal

> > > > (adrenal CT

> > > > > > > > showed slight enlargement). Many trips to the ER when BP

> > > > shoots to

> > > > > > > > 200/130+, responds only to nitro and very short lived.

> > Endo

> > > > > > > > suspected cushings (ruled out), then PA but aldosterone is

> > > > low/

> > > > > > > > normal. Took spiro while awaiting test results, potassium

> > > > came up to

> > > > > > > > low/normal but BP didn't move much. Chloride is high,

> > sodium

> > > > is high

> > > > > > > > end of normal range, potassium low, cortisol low...waiting

> > > > for renin

> > > > > > > > results and ACTH stimulation test being done this week.

> > Saline

> > > > > > > > suppression test " not normal " according to Endo but I am

> > not

> > > > sure

> > > > > > > > what the results were. They apparently ruled out PA. He

> > is now

> > > > > > > > asking a lot of questions about family history and

> > mentioned

> > > > > > > > possible genetic testing. We are scared. My husband has

> > zero

> > > > quality

> > > > > > > > of life....describes the feeling as " thinks he is red

> > lining

> > > > all of

> > > > > > > > the time " . Endo started Amaloride (and continued

> > labetalol)

> > > > 2 days

> > > > > > > > ago. What else can we do to speed this up so he can start

> > > > feeling

> > > > > > > > better? Any ideas? If it is Liddle's, how long for

> > Amaloride

> > > > to

> > > > > > > > start working? We have a 2yr old daughter and so we are

> > > > freaking out

> > > > > > > > about the possibility of a genetic condition. Thanks so

> > much

> > > > for any

> > > > > > > > light you can shed!

> > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Also increase K using low Na V-8May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

Thanks, the results form had the same reference ranges listed pre and post. He says he didn't pee during the test but really had to go by the end. He was also kept there for a while as his BP went from 148/105 at the start to 185/121 at the end and he developed a severe headache.

He has been on Amaloride for a week now and his BP has come down to about 150/100....that is about a 20pt drop on both numbers. Crossing our fingers! Will read up on DASH and improve salt intake, he has cut back but could be more strict with it. Thanks so much!

> > > > > > >

> > > > > > > Blood pressure in general is inherited. By age 6 months

> > babies

> > > > with

> > > > > > > parents who have HTN have a higher BP than those with NT

> > > > parents.

> > > > > > >

> > > > > > > But it sounds to me like you have early PA and a trail of

> > > > spiro and

> > > > > > > DASH is indicated now. How much spiro was he on and how much

> > > > salt was

> > > > > > > he eating.

> > > > > > >

> > > > > > > The most common inherited form of PA is GRA and I have

> > > > followed 2

> > > > > > > families with this and reported the first ever case of

> > > > normokalemic GRA.

> > > > > > >

> > > > > > > But really need your numbers and the normal values

> > > > > > >

> > > > > > > He can out salt spiro and Am so have endo check urine Na

> > and K

> > > > and

> > > > > > > creatinine to assess this diet intake of Na and K.

> > > > > > >

> > > > > > > CE Grim MD

> > > > > > > > I am new here and desperate for help. Husband discovered

> > > > high BP

> > > > > > > > 4yrs ago, his "normal" is about 175/120. Drug resistant,

> > > > tried many.

> > > > > > > > Renal CT, Echo, Adrenal CT, etc, etc all seem normal

> > > > (adrenal CT

> > > > > > > > showed slight enlargement). Many trips to the ER when BP

> > > > shoots to

> > > > > > > > 200/130+, responds only to nitro and very short lived.

> > Endo

> > > > > > > > suspected cushings (ruled out), then PA but aldosterone is

> > > > low/

> > > > > > > > normal. Took spiro while awaiting test results, potassium

> > > > came up to

> > > > > > > > low/normal but BP didn't move much. Chloride is high,

> > sodium

> > > > is high

> > > > > > > > end of normal range, potassium low, cortisol low...waiting

> > > > for renin

> > > > > > > > results and ACTH stimulation test being done this week.

> > Saline

> > > > > > > > suppression test "not normal" according to Endo but I am

> > not

> > > > sure

> > > > > > > > what the results were. They apparently ruled out PA. He

> > is now

> > > > > > > > asking a lot of questions about family history and

> > mentioned

> > > > > > > > possible genetic testing. We are scared. My husband has

> > zero

> > > > quality

> > > > > > > > of life....describes the feeling as "thinks he is red

> > lining

> > > > all of

> > > > > > > > the time". Endo started Amaloride (and continued

> > labetalol)

> > > > 2 days

> > > > > > > > ago. What else can we do to speed this up so he can start

> > > > feeling

> > > > > > > > better? Any ideas? If it is Liddle's, how long for

> > Amaloride

> > > > to

> > > > > > > > start working? We have a 2yr old daughter and so we are

> > > > freaking out

> > > > > > > > about the possibility of a genetic condition. Thanks so

> > much

> > > > for any

> > > > > > > > light you can shed!

> > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

>

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