Re: Most recent PA survey results

[Guest guest]

This is excellent and will include latest update if our paper gets on at the AM SOC OF HTN. meeting is May 20th so we need to encourage everyone to enter their data. I can update the ppt just before the meeting Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I just uploaded the most recent PA survey results, it can be found in the files section of the group under PA survey results. I'll hit the highlights and do a brief summary here.

55 group members who have been diagnosed with PA have taken the survey, 22 males (40%) and 33 females (60%). Our ages vary from 25-30 to over 65, with the largest age group being 51-55. We have representatives from 11 different countries.

The age when HPTN was diagnosed varies from under 25 to 61-65, with the largest number of people being in the 36-40 age group when high blood pressure first discovered. The age when diagnosed with PA also varies widely, from 31-35 to over 65, with the largest number of people in the 51-55 age group before finally being diagnosed with PA.

The largest number of respondents were diagnosed with PA by an Endocrinologist after being seen by 1-12 physicians. 21 of us have hyperplasia, 26 unilateral adenoma, 8 bilateral adenomas.

Our three main symptoms before being diagnosed were: 1) poorly controlled BP despite multiple meds 2)night to pee 3)unexplained tiredness/lethargy. The three main things that still bother us after diagnosis and treatment are: 1)unexplained tiredness/lethargy 2)brain fog or feeling of confusion 3)muscle cramps/tremors/twitching.

18 (33%) of us have had AVS but only 9 of the 18 were done correctly with ACTH and completed sucessfully.

9 (16%) people have had an adrenalectomy. Of these nine, 6 have had at least some symptoms reccur since surgery.

46 (84%) of respondants monitor their BP at home.

27 (55%) say they generally feel well since treatment, 22 (45%) say they feel generally unwell most of the time.

Only 9 (16%) were ever told to follow the DASH diet.

[Guest guest]

Where do we enter our data? I'd be willing to contribute mine.

>

> > I just uploaded the most recent PA survey results, it can be found in the

files section of the group under PA survey results. I'll hit the highlights and

do a brief summary here.

> >

> > 55 group members who have been diagnosed with PA have taken the survey, 22

males (40%) and 33 females (60%). Our ages vary from 25-30 to over 65, with the

largest age group being 51-55. We have representatives from 11 different

countries.

> >

> > The age when HPTN was diagnosed varies from under 25 to 61-65, with the

largest number of people being in the 36-40 age group when high blood pressure

first discovered. The age when diagnosed with PA also varies widely, from 31-35

to over 65, with the largest number of people in the 51-55 age group before

finally being diagnosed with PA.

> >

> > The largest number of respondents were diagnosed with PA by an

Endocrinologist after being seen by 1-12 physicians. 21 of us have hyperplasia,

26 unilateral adenoma, 8 bilateral adenomas.

> >

> > Our three main symptoms before being diagnosed were: 1) poorly controlled

BP despite multiple meds 2)night to pee 3)unexplained tiredness/lethargy. The

three main things that still bother us after diagnosis and treatment are:

1)unexplained tiredness/lethargy 2)brain fog or feeling of confusion 3)muscle

cramps/tremors/twitching.

> >

> > 18 (33%) of us have had AVS but only 9 of the 18 were done correctly with

ACTH and completed sucessfully.

> >

> > 9 (16%) people have had an adrenalectomy. Of these nine, 6 have had at

least some symptoms reccur since surgery.

> >

> > 46 (84%) of respondants monitor their BP at home.

> >

> > 27 (55%) say they generally feel well since treatment, 22 (45%) say they

feel generally unwell most of the time.

> >

> > Only 9 (16%) were ever told to follow the DASH diet.

> >

> >

> >

>

[Guest guest]

Whoops, found it It's here:

http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379

> >

> > > I just uploaded the most recent PA survey results, it can be found in the

files section of the group under PA survey results. I'll hit the highlights and

do a brief summary here.

> > >

> > > 55 group members who have been diagnosed with PA have taken the survey, 22

males (40%) and 33 females (60%). Our ages vary from 25-30 to over 65, with the

largest age group being 51-55. We have representatives from 11 different

countries.

> > >

> > > The age when HPTN was diagnosed varies from under 25 to 61-65, with the

largest number of people being in the 36-40 age group when high blood pressure

first discovered. The age when diagnosed with PA also varies widely, from 31-35

to over 65, with the largest number of people in the 51-55 age group before

finally being diagnosed with PA.

> > >

> > > The largest number of respondents were diagnosed with PA by an

Endocrinologist after being seen by 1-12 physicians. 21 of us have hyperplasia,

26 unilateral adenoma, 8 bilateral adenomas.

> > >

> > > Our three main symptoms before being diagnosed were: 1) poorly controlled

BP despite multiple meds 2)night to pee 3)unexplained tiredness/lethargy. The

three main things that still bother us after diagnosis and treatment are:

1)unexplained tiredness/lethargy 2)brain fog or feeling of confusion 3)muscle

cramps/tremors/twitching.

> > >

> > > 18 (33%) of us have had AVS but only 9 of the 18 were done correctly with

ACTH and completed sucessfully.

> > >

> > > 9 (16%) people have had an adrenalectomy. Of these nine, 6 have had at

least some symptoms reccur since surgery.

> > >

> > > 46 (84%) of respondants monitor their BP at home.

> > >

> > > 27 (55%) say they generally feel well since treatment, 22 (45%) say they

feel generally unwell most of the time.

> > >

> > > Only 9 (16%) were ever told to follow the DASH diet.

> > >

> > >

> > >

> >

>

[Guest guest]

Do we have a question if they got better with DASHING. Will need to think about a set of questions on this. Any one care to stArt on a set of questions?Like did ur Bp get better on DASH? if so what was the average before and after DASH?Were u able to decrease other BP MEDS? If yes which classes: ACE, ARB, alpha blockers, anxiolytics, antidepressants, BB, CCB, DIURETICS, vasodilators, others Did your cramps/pains get better? Is so where and how?Did your nocturnia get better? If so what was the max times u got up at night? How many times a night now?Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I just uploaded the most recent PA survey results, it can be found in the files section of the group under PA survey results. I'll hit the highlights and do a brief summary here.

55 group members who have been diagnosed with PA have taken the survey, 22 males (40%) and 33 females (60%). Our ages vary from 25-30 to over 65, with the largest age group being 51-55. We have representatives from 11 different countries.

The age when HPTN was diagnosed varies from under 25 to 61-65, with the largest number of people being in the 36-40 age group when high blood pressure first discovered. The age when diagnosed with PA also varies widely, from 31-35 to over 65, with the largest number of people in the 51-55 age group before finally being diagnosed with PA.

The largest number of respondents were diagnosed with PA by an Endocrinologist after being seen by 1-12 physicians. 21 of us have hyperplasia, 26 unilateral adenoma, 8 bilateral adenomas.

Our three main symptoms before being diagnosed were: 1) poorly controlled BP despite multiple meds 2)night to pee 3)unexplained tiredness/lethargy. The three main things that still bother us after diagnosis and treatment are: 1)unexplained tiredness/lethargy 2)brain fog or feeling of confusion 3)muscle cramps/tremors/twitching.

18 (33%) of us have had AVS but only 9 of the 18 were done correctly with ACTH and completed sucessfully.

9 (16%) people have had an adrenalectomy. Of these nine, 6 have had at least some symptoms reccur since surgery.

46 (84%) of respondants monitor their BP at home.

27 (55%) say they generally feel well since treatment, 22 (45%) say they feel generally unwell most of the time.

Only 9 (16%) were ever told to follow the DASH diet.

[Guest guest]

Thanks CE Grim MDTiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Whoops, found it It's here:

http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379

> >

> > > I just uploaded the most recent PA survey results, it can be found in the files section of the group under PA survey results. I'll hit the highlights and do a brief summary here.

> > >

> > > 55 group members who have been diagnosed with PA have taken the survey, 22 males (40%) and 33 females (60%). Our ages vary from 25-30 to over 65, with the largest age group being 51-55. We have representatives from 11 different countries.

> > >

> > > The age when HPTN was diagnosed varies from under 25 to 61-65, with the largest number of people being in the 36-40 age group when high blood pressure first discovered. The age when diagnosed with PA also varies widely, from 31-35 to over 65, with the largest number of people in the 51-55 age group before finally being diagnosed with PA.

> > >

> > > The largest number of respondents were diagnosed with PA by an Endocrinologist after being seen by 1-12 physicians. 21 of us have hyperplasia, 26 unilateral adenoma, 8 bilateral adenomas.

> > >

> > > Our three main symptoms before being diagnosed were: 1) poorly controlled BP despite multiple meds 2)night to pee 3)unexplained tiredness/lethargy. The three main things that still bother us after diagnosis and treatment are: 1)unexplained tiredness/lethargy 2)brain fog or feeling of confusion 3)muscle cramps/tremors/twitching.

> > >

> > > 18 (33%) of us have had AVS but only 9 of the 18 were done correctly with ACTH and completed sucessfully.

> > >

> > > 9 (16%) people have had an adrenalectomy. Of these nine, 6 have had at least some symptoms reccur since surgery.

> > >

> > > 46 (84%) of respondants monitor their BP at home.

> > >

> > > 27 (55%) say they generally feel well since treatment, 22 (45%) say they feel generally unwell most of the time.

> > >

> > > Only 9 (16%) were ever told to follow the DASH diet.

> > >

> > >

> > >

> >

>

[Guest guest]

Thanks CE Grim MDTiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Whoops, found it It's here:

http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379

> >

> > > I just uploaded the most recent PA survey results, it can be found in the files section of the group under PA survey results. I'll hit the highlights and do a brief summary here.

> > >

> > > 55 group members who have been diagnosed with PA have taken the survey, 22 males (40%) and 33 females (60%). Our ages vary from 25-30 to over 65, with the largest age group being 51-55. We have representatives from 11 different countries.

> > >

> > > The age when HPTN was diagnosed varies from under 25 to 61-65, with the largest number of people being in the 36-40 age group when high blood pressure first discovered. The age when diagnosed with PA also varies widely, from 31-35 to over 65, with the largest number of people in the 51-55 age group before finally being diagnosed with PA.

> > >

> > > The largest number of respondents were diagnosed with PA by an Endocrinologist after being seen by 1-12 physicians. 21 of us have hyperplasia, 26 unilateral adenoma, 8 bilateral adenomas.

> > >

> > > Our three main symptoms before being diagnosed were: 1) poorly controlled BP despite multiple meds 2)night to pee 3)unexplained tiredness/lethargy. The three main things that still bother us after diagnosis and treatment are: 1)unexplained tiredness/lethargy 2)brain fog or feeling of confusion 3)muscle cramps/tremors/twitching.

> > >

> > > 18 (33%) of us have had AVS but only 9 of the 18 were done correctly with ACTH and completed sucessfully.

> > >

> > > 9 (16%) people have had an adrenalectomy. Of these nine, 6 have had at least some symptoms reccur since surgery.

> > >

> > > 46 (84%) of respondants monitor their BP at home.

> > >

> > > 27 (55%) say they generally feel well since treatment, 22 (45%) say they feel generally unwell most of the time.

> > >

> > > Only 9 (16%) were ever told to follow the DASH diet.

> > >

> > >

> > >

> >

>