Re: Time to rethink how to move forward with this group.

October 10, 2011

Don,aka GPS, glad we " smoked you out " as it sounds like you have been there/done

that! I retired in 1997 and the last half was in management. Like any " good "

manager I could play devils advocate and seperate the wheat from the chaff but

when it came to doing I left it to the analysts! (Loved to " break it " when it

came to testing!)

I will take a look at some of your political blog as long as I don't have to

" sit back, shut up and hang on! "

BTW, I started my computer career at Randolph Air Force Base!

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

pain. Treating with Meds. And DASH. . Current BP(last week ave): 125/73

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

Meds: Duloxetine hcl 80 MG, Mirtazapine 7.5 MG, Metoprolol Tartrate 200 MG,

81mg asprin, Metformin 2000MG and Spironolactone 50 MG.

> > > > > > > > >

> > > > > > > > > > First I can understand Dr Grim's need to keep track of

> > > whats

> > > > > what on this sight. In some ways the thumbnail can be the thing to

> > > do.

> > > > > How ever not all want to put there medical history out there. While

> > > I

> > > > > for one have no problem with this I do know from posting so

> > > information

> > > > > about my weight I got what I thought was a distressful remark for

> > > all

> > > > > over weight people. I Also think some that ask questions do not like

> > > it

> > > > > when we ask them to provide the meds and labs as they do not give

> > > this

> > > > > information.

> > > > > > > > > >

> > > > > > > > > > If it it now going to be Dr Grim's policy to not answer

> >

> > > > > questiuns unless there is a thumbnail then thes nees to apply to

> > > every

> > > > > one so if some like Val ask questions she needs to have a thumbnail

> > > for

> > > > > Dr Grim to reply to it.

> > > > > > > > > >

> > > > > > > > > > Also if this is to be the policy it needs to be added to

> > > home

> > > > > page of group site. This way all that want to join group will know

> > > they

> > > > > need to supply one or if they do not want to give out part on the

> > > > > medical history then decide to not join group.

> > > > > > > > > >

> > > > > > > > > > We need to remember this is a world wide group and not

> > > post

> > > > > any thing that may be hurtful to any one. Have see some of this in

> > > past

> > > > > few weeks. This also needs to be on home page with a warning as to

> > > how

> > > > > to deal with it.

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

October 10, 2011

I am glad that there was support here for the surgery option. Even though I am

58, my team recommended that I pursue that option, mostly because my potassium

was so low & getting lower & the AVS showed that the PA lateralized in my left

adrenal. I hesitated to mention here that I was considering an AVS or surgery

because there seemed to be an anti-surgery bias. However, I am glad I stuck

around & said something. And, I appreciate the feedback & responses I have

received. This is my first group forum experience with folks I have never met.

I feel like I am getting to know some you & appreciate your passions & senses

of humor.

The thumbnails helped me early on to identify with others in the group & to

recognize some symptoms I had that I didn't realize were related to PA.

(Members' stories also helped.) I thought some of the people without thumbnails

were Dr. Grim's research assistants because they seemed so authoritative!

I have copied & pasted a thumbnail I put together & saved it on my computer in

Word to paste at the end of my posts, but I can't seem to do the same on my

Droid.

A suggested template for thumbnails in the files would be helpful. It would

also be helpful if the files were cleaned up a little. I would be willing to

give it a try, but I not sure if I, as a member, would be able to create & move

folders & move files into folders. It certainly would be helpful to have

complete easy-to-find files here (or in another website as proposed by msmith)

detailing PA tests, resources & options, with non-technical explanations.

I think the idea of a non-profit is great. There is so much it could do from

publicizing what termed " the not so essential hypertension " to providing

information in various forms on this disease, to fund-raising for further

research... How do you go about starting a nonprofit from a forum on line? I

believe I have seen Dr. Grim, & mention a book with background &

stories, which would be a good idea too.

I am grateful for this group & would like to do whatever I can to help fellow

PAers get the information & help they need.

Lucy Sage

Sent from my Verizon Wireless Phone

msmith_1928 wrote:

>Regardless of the outcome of my upcoming surgery, there will be two of us

fervently supporting it as an option, Hester.

>

>One thing I wanted to point out is a problem inherent to most forums: generally

the only people who take the time to hang out and post are the ones who are not

doing well. For every person on here who is posting about spiro and DASH, there

may well be another person who came here, signed up, had their surgery, and is

doing fine; the trouble is they don't stick around to follow up.

>

>> > > > > >

>> > > > > > > First I can understand Dr Grim's need to keep track of whats what

on this sight. In some ways the thumbnail can be the thing to do. How ever not

all want to put there medical history out there. While I for one have no problem

with this I do know from posting so information about my weight I got what I

thought was a distressful remark for all over weight people. I Also think some

that ask questions do not like it when we ask them to provide the meds and labs

as they do not give this information.

>> > > > > > >

>> > > > > > > If it it now going to be Dr Grim's policy to not answer questiuns

unless there is a thumbnail then thes nees to apply to every one so if some like

Val ask questions she needs to have a thumbnail for Dr Grim to reply to it.

>> > > > > > >

>> > > > > > > Also if this is to be the policy it needs to be added to home

page of group site. This way all that want to join group will know they need to

supply one or if they do not want to give out part on the medical history then

decide to not join group.

>> > > > > > >

>> > > > > > > We need to remember this is a world wide group and not post any

thing that may be hurtful to any one. Have see some of this in past few weeks.

This also needs to be on home page with a warning as to how to deal with it.

>> > > > > > >

>> > > > > >

>> > > > >

>> > > >

>> > >

>> >

>>

>

October 10, 2011

I would counter that my "bias" toward non surgical intervention is based on a long experience of following patients who have undergone surgery, having liked at adrenals removed (under the microscope) in which it very common to see multiple micro nodules in the rest of the gland. Suggesting to me that most PA is due to bilateral disease. Even in those who have very early PA AS WELL as those with one large adenoma. Indeed the large adenoma is almost always associated with micronodules in the rest of the gland. Finally many on this group have clearly benefited by Adding the DASH eating program and have been able to eliminate the most MEDS and reduce MCBS. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I don't really have any answers but I know I joined this group thinking it would be more like a general support group/community than it really is. I can already see how that's hard when people dip in as they need it and then disappear off once they're cured which leaves the 'hard core' cases hanging around.

But the group is far more a lot of satellites orbitting around the sun that is Dr.Grim than a community in the sense that I've experienced in other on-line communities. And I think that also makes it hard to sustain because it is very hard to create a meaningful support group if virtually all the messages are directed at one man - and especially given that that one man then has next to no time to give more than a couple of lines in reply to any single message. Clearly Dr.Grim can't be expected to remember everything about every member that has ever been on this site but I wonder whether there is an alternative to thumbnails? Personally I have no way of creating one except by retyping it every time which I'm not going to do - I put in what I see as relevant in my reply. But other communities I belong to have a member profile which you can fill in and that's where you put the personal stuff. Then it doesn't leap out at you every time you type a message (and the rest of us don't have to

wade through it every time either) but if it's pertinent in the reply, it's only a click away to see the relevant facts.

I have two more minor quibbles with the forum and hang around in spite (or possibly because) of them.

Firstly, I don't believe the advice given is completely balanced. My very first query on here related to the pros and cons of surgery vs. life-long meds as treatment for PA and I've never really seen an answer to this query - which seems to be one of the most commonly asked. Clearly not all the pros and cons are known but there is a huge bias towards the Dash diet and meds for life and I still don't believe that that is always the right answer. So I'll hang around advocating surgery from time to time. If a forum wants to retain new members, it can't be seen to have too much of an agenda - and certainly the impression that on this one is that there is and that always leaves a question about why and who benefits (even if there is no substance to that query).

Secondly, it does have a huge US bias as can be seen in the frequent forays into US politics and the US health system. It's not really a problem but it would be great to be able to seperate out those discussion threads into a seperate area of something.

Yahoo groups as a whole are difficult to navigate - the tree like structure of discussions as opposed to linear discussion threads mean that a starting topic can rapidly diversify. I do find that hard work - trying to work out who has responded to whom about what. But I think that's impossible to address without changing the entire forum and there have been lots of discussions on thread etiquette. Unfortunately I don't think etiquette will solve it - Yahoo groups leave a lot to be desired.

So I'm still here in spite of certain reservations because I think the group has a huge amount to offer and the downsides are not huge in comparison to the upsides. But I can understand why some people don't necessarily hang around for long - although as I said at the start, I can offer no solutions.....useles, eh?

Have I diverted this thread entirely? Or just opened up the discussion beyond thumbnails?

H

> > >

> > > > First I can understand Dr Grim's need to keep track of whats what on this sight. In some ways the thumbnail can be the thing to do. How ever not all want to put there medical history out there. While I for one have no problem with this I do know from posting so information about my weight I got what I thought was a distressful remark for all over weight people. I Also think some that ask questions do not like it when we ask them to provide the meds and labs as they do not give this information.

> > > >

> > > > If it it now going to be Dr Grim's policy to not answer questiuns unless there is a thumbnail then thes nees to apply to every one so if some like Val ask questions she needs to have a thumbnail for Dr Grim to reply to it.

> > > >

> > > > Also if this is to be the policy it needs to be added to home page of group site. This way all that want to join group will know they need to supply one or if they do not want to give out part on the medical history then decide to not join group.

> > > >

> > > > We need to remember this is a world wide group and not post any thing that may be hurtful to any one. Have see some of this in past few weeks. This also needs to be on home page with a warning as to how to deal with it.

> > > >

> > >

> >

>

October 10, 2011

But micronodules in the rest of the gland wouldn't necessarily mean they would

be found in the *other* gland, would it? I understand your POV if what we're

discussing is removing just the tumor (vs. the whole gland).

I get that in your experience you have seen more bilaterals than unilaterals,

and this correlates well with the research in general: IIRC the statistic is 60%

of us are bilateral.

Which (I remain hopeful!) means that 40% of us maybe can be cured via surgery.

Maybe.

> > > > >

> > > > > > First I can understand Dr Grim's need to keep track of whats what on

this sight. In some ways the thumbnail can be the thing to do. How ever not all

want to put there medical history out there. While I for one have no problem

with this I do know from posting so information about my weight I got what I

thought was a distressful remark for all over weight people. I Also think some

that ask questions do not like it when we ask them to provide the meds and labs

as they do not give this information.

> > > > > >

> > > > > > If it it now going to be Dr Grim's policy to not answer questiuns

unless there is a thumbnail then thes nees to apply to every one so if some like

Val ask questions she needs to have a thumbnail for Dr Grim to reply to it.

> > > > > >

> > > > > > Also if this is to be the policy it needs to be added to home page

of group site. This way all that want to join group will know they need to

supply one or if they do not want to give out part on the medical history then

decide to not join group.

> > > > > >

> > > > > > We need to remember this is a world wide group and not post any

thing that may be hurtful to any one. Have see some of this in past few weeks.

This also needs to be on home page with a warning as to how to deal with it.

> > > > > >

> > > > >

> > > >

> > >

> >

>

October 10, 2011

One of the problems i have seen with support groups that I have looked at is that there is no or little medical expertise to temper the testimonial aspects of their discussions. But then I suppose I also take a testimonial approach as we have not evolved a group that is collecting data in a systematic manner so we can say-of the last 25 folks here with stories (and numbers) like yours. Xx% have been failed DASH and MCBs and undergo surgery xx% have been cured (returned to normal in the absence of meds), x % had surgery and are now bAck on the SAE meds xx% need fewer meds etc. Overall of those who had surgery xx% would do it again and xx% would not. What I think we should work on is a data collection system that will accomplish this over. I am pretty good at Filemaker Pro and think we could use this. But cannot do by myself. Anyone can download a 30 day free trial to look at what FMP can do. It runs on both Macs and PCs. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Hester, you bring up some great points.I'm wondering if migrating the group to another platform, such as yuku.com, would be a better option. My experience with that platform is somewhat limited, but I do know it allows for setting up profiles and organizing threads by topic. One of the pheochromacytoma groups uses it; you can see their board here. (And, note to Dr. Grim - after I'm back from my surgery I would be more than happy to set up a board for us on that platform.)I have to say that early on I was ready to drop out of the group because of the bias toward one solution only, and that solution being DASH and meds. But I felt it important that if nothing else, I hung around to share my downside-of-spiro experience with the newbies, because their doctors are not likely going to warn them that they may end up with polymenorrhea or gynecomastia or depression like I did. I'm

no doctor, but I don't believe that medicine is a one-size-fits-all approach, and I consider myself living proof.At any rate, once the surgery is behind me I have no intention of leaving the site - in fact, when my life becomes something other than constant doctor appointments and weekly blood draws, I hope to be able to so something to expand the web presence of Conn's syndrome/hyperaldosteronism. I've got a few ideas in mind but plan to start simple: a website detailing tests, resources, and treatment options. -msmith1928Nulliparous female, 46, 5'3", 120 lbs, polymenorrhea, hyperinsulinemia, hereditary fructose intolerance,

lactose intolerance, probable gluten intolerance. Current meds are K 20

MEQ 4x/day, singulair 10mg, norethindrone .35mg to regulate polymenorrhea, cyclobenzaprine 5-10mg when needed, fexofenadine 180mg as

needed. Low sodium, fructose- and grain-free diet. Known drug allergies include PCN, sulfa, tetracycline; spiro caused gynecomastia, polymenorrhea, depression, anxiety, and dizziness.

1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); AVS determined disease is unilateral, left laparoscopic adrenalectomy is scheduled for 10/13/2011.> > > > > > > > > First I can understand Dr Grim's need to keep track of whats what on this sight. In some ways the thumbnail can be the thing to do. How ever not all want to put there medical history out there. While I for one have no problem with this I do know from posting so information about my weight I got what I thought was a distressful remark for all over weight people. I Also think some that ask questions do not like it when we ask them to provide the meds and labs as they do not give this information. > > > > > > > > > > If it it now going to be Dr Grim's policy to not answer questiuns unless there is a thumbnail then thes nees to

apply to every one so if some like Val ask questions she needs to have a thumbnail for Dr Grim to reply to it. > > > > > > > > > > Also if this is to be the policy it needs to be added to home page of group site. This way all that want to join group will know they need to supply one or if they do not want to give out part on the medical history then decide to not join group.> > > > > > > > > > We need to remember this is a world wide group and not post any thing that may be hurtful to any one. Have see some of this in past few weeks. This also needs to be on home page with a warning as to how to deal with it. > > > > > > > > > > > > > > >> > > >> > > > > >> >>

Reply to sender |

Reply to group |

Reply via web post |

Start a New Topic

Messages in this topic

(7)

Recent Activity:

New Members

3

New Files

1

Visit Your Group

MARKETPLACE

October 10, 2011

Ask her what she defines as successful and how long she has followed th Up herself. Most surgeons stop follow up after a year. And tend to remember the good ones rather than the not so good ones. This success rate is the highest I have ever heard of and she needs to publish this so others can see it. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Oh absolutely! The surgeon told me she'd estimate that of all of the Conn's adrenalectomies her team has done, only about 5% were unsuccessful. But the reality is she has no way of knowing what my outcome will be, especially considering that I've had it for so long.

And thanks, , I appreciate the thoughts and prayers.

> > > > >

> > > > > > First I can understand Dr Grim's need to keep track of whats what on this sight. In some ways the thumbnail can be the thing to do. How ever not all want to put there medical history out there. While I for one have no problem with this I do know from posting so information about my weight I got what I thought was a distressful remark for all over weight people. I Also think some that ask questions do not like it when we ask them to provide the meds and labs as they do not give this information.

> > > > > >

> > > > > > If it it now going to be Dr Grim's policy to not answer questiuns unless there is a thumbnail then thes nees to apply to every one so if some like Val ask questions she needs to have a thumbnail for Dr Grim to reply to it.

> > > > > >

> > > > > > Also if this is to be the policy it needs to be added to home page of group site. This way all that want to join group will know they need to supply one or if they do not want to give out part on the medical history then decide to not join group.

> > > > > >

> > > > > > We need to remember this is a world wide group and not post any thing that may be hurtful to any one. Have see some of this in past few weeks. This also needs to be on home page with a warning as to how to deal with it.

> > > > > >

> > > > >

> > > >

> > >

> >

>

Reply to sender |

Reply to group |

Reply via web post |

Start a New Topic

Messages in this topic

(9)

Recent Activity:

New Members

3

New Files

1

Visit Your Group

October 10, 2011

Again my recommendations are base on sending over 50 folks to surgery in my early days. There is nothing more exciting that curing a patient with difficult HTN. UnfortunaTly I moved about every 10 years and don't have an average long term follow up my self despite doing this for 45 years. However the success of the DASH and the advent of eplerenone have markedly tempered my approach. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I don't think it is about being thin skinned or taking offence - nobody has ever offended me on this site and I see very few passionate debates that are liable to offend anybody (which in itself is a pity). But a genuine forum has people offering a diversity of opinions and welcomes all those. So while no single poster can offer all of those, a forum should aim for it. It's not about right or wrong but it is about seeing two sides to an argument...it's easy enough to ignore the advice you don't want (wherever it comes from) if you know there is an alternative. But somebody has to tell you about that alternative. And that's what I don't observe here - and that's also why I'm hanging around so that there are some who advocate surgery.

H

> > > >

> > > > > First I can understand Dr Grim's need to keep track of whats what on this sight. In some ways the thumbnail can be the thing to do. How ever not all want to put there medical history out there. While I for one have no problem with this I do know from posting so information about my weight I got what I thought was a distressful remark for all over weight people. I Also think some that ask questions do not like it when we ask them to provide the meds and labs as they do not give this information.

> > > > >

> > > > > If it it now going to be Dr Grim's policy to not answer questiuns unless there is a thumbnail then thes nees to apply to every one so if some like Val ask questions she needs to have a thumbnail for Dr Grim to reply to it.

> > > > >

> > > > > Also if this is to be the policy it needs to be added to home page of group site. This way all that want to join group will know they need to supply one or if they do not want to give out part on the medical history then decide to not join group.

> > > > >

> > > > > We need to remember this is a world wide group and not post any thing that may be hurtful to any one. Have see some of this in past few weeks. This also needs to be on home page with a warning as to how to deal with it.

> > > > >

> > > >

> > >

> >

>

Reply to sender |

Reply to group |

Reply via web post |

Start a New Topic

Messages in this topic

(19)

Recent Activity:

New Members

3

New Files

1

Visit Your Group

MARKETPLACE

October 10, 2011

We have been going here for almost 10 years and all posts are still available but that is a bit overwhelming. Perhaps a way to filter these would be good but not my area of expertise. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Hi Don, I was thinking about Wordpress since I'm already familiar with it for blogging, but I've never used the non-hosted version. Any idea if there's a plug-in that lets you add a forum or chat room?

Yuku does look like it's having some issues today - I'm getting a blank screen every time I click a link.

> > > > > >

> > > > > > > First I can understand Dr Grim's need to keep track of whats what

> > on this sight. In some ways the thumbnail can be the thing to do. How ever

> > not all want to put there medical history out there. While I for one have no

> > problem with this I do know from posting so information about my weight I

> > got what I thought was a distressful remark for all over weight people. I

> > Also think some that ask questions do not like it when we ask them to

> > provide the meds and labs as they do not give this information.

> > > > > > >

> > > > > > > If it it now going to be Dr Grim's policy to not answer questiuns

> > unless there is a thumbnail then thes nees to apply to every one so if some

> > like Val ask questions she needs to have a thumbnail for Dr Grim to reply to

> > it.

> > > > > > >

> > > > > > > Also if this is to be the policy it needs to be added to home

> > page of group site. This way all that want to join group will know they need

> > to supply one or if they do not want to give out part on the medical history

> > then decide to not join group.

> > > > > > >

> > > > > > > We need to remember this is a world wide group and not post any

> > thing that may be hurtful to any one. Have see some of this in past few

> > weeks. This also needs to be on home page with a warning as to how to deal

> > with it.

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

Reply to sender |

Reply to group |

Reply via web post |

Start a New Topic

October 10, 2011

No I always recommend AVS when all else has failed. But what we really need is a good trial in which 50% who come here agree to do surgery and the other 50% medical Rx. Then we will have hard data to consider as they work on their best decision Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Maybe it is about how to find the discussions because searching thtough old discussions is nigh-on impossible by thread title. But I never had any response to my 'pros and cons' question beyond being told DASH and meds was the way to go - despite pressing and pressing for the equivalent analysis on surgery. And in the year since then I've seen very little support for surgery. Now in my case (under 40, clear adenoma, BP controlled my minimal meds, PA short term) it was a no-brainer according to all the other research I could lay my hands on.

When I got no response on here to surgery questions, I did trawl through Pub Med and every other piece of research I could find - but it would have been lovely to have been able to speed that up by getting some facts on here to begin with. And I'm guessing that's what many others do - they come on here as a first port of call but then move on to doing their own fundamental research or go with their medical teams advice and never come back.

It's great, fantastic, that so many of you are fervent supporters of DASH and meds. Really - I absolutely mean that. But that doesn't mean there isn't ever a case for surgery. Now I'll do my best to be equally fervent in support of surgery when I think somebody has a case for it - that's why I'm still here. Because that's how it's all going to work, imho. But I'm not a medic and I won't be up to date with the latest research so I'll never carry as much weight as many of you. So hopefully there will be others around giving an alternative view-point too. And if that isn't welcome then there should be something in the intro about this being a forum for supporting Conn's sufferers through diet and meds rather than it being a general PA support site.

H

> > > > >

> > > > > > First I can understand Dr Grim's need to keep track of whats what on this sight. In some ways the thumbnail can be the thing to do. How ever not all want to put there medical history out there. While I for one have no problem with this I do know from posting so information about my weight I got what I thought was a distressful remark for all over weight people. I Also think some that ask questions do not like it when we ask them to provide the meds and labs as they do not give this information.

> > > > > >

> > > > > > If it it now going to be Dr Grim's policy to not answer questiuns unless there is a thumbnail then thes nees to apply to every one so if some like Val ask questions she needs to have a thumbnail for Dr Grim to reply to it.

> > > > > >

> > > > > > Also if this is to be the policy it needs to be added to home page of group site. This way all that want to join group will know they need to supply one or if they do not want to give out part on the medical history then decide to not join group.

> > > > > >

> > > > > > We need to remember this is a world wide group and not post any thing that may be hurtful to any one. Have see some of this in past few weeks. This also needs to be on home page with a warning as to how to deal with it.

> > > > > >

> > > > >

> > > >

> > >

> >

>

Reply to sender |

Reply to group |

Reply via web post |

Start a New Topic

Messages in this topic

(24)

Recent Activity:

New Members

3

New Files

1

Visit Your Group

MARKETPLACE

October 10, 2011

Even then there are so many variables. I think the outcomes for those of us who

are otherwise healthy - not obese, nonsmokers, we exercise and don't eat junk -

might be very different than, say, for someone who has other risk factors for

HTN.

> > > > > > >

> > > > > > > > First I can understand Dr Grim's need to keep track of whats

what on this sight. In some ways the thumbnail can be the thing to do. How ever

not all want to put there medical history out there. While I for one have no

problem with this I do know from posting so information about my weight I got

what I thought was a distressful remark for all over weight people. I Also think

some that ask questions do not like it when we ask them to provide the meds and

labs as they do not give this information.

> > > > > > > >

> > > > > > > > If it it now going to be Dr Grim's policy to not answer

questiuns unless there is a thumbnail then thes nees to apply to every one so if

some like Val ask questions she needs to have a thumbnail for Dr Grim to reply

to it.

> > > > > > > >

> > > > > > > > Also if this is to be the policy it needs to be added to home

page of group site. This way all that want to join group will know they need to

supply one or if they do not want to give out part on the medical history then

decide to not join group.

> > > > > > > >

> > > > > > > > We need to remember this is a world wide group and not post any

thing that may be hurtful to any one. Have see some of this in past few weeks.

This also needs to be on home page with a warning as to how to deal with it.

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> > Reply to sender | Reply to group | Reply via web post | Start a New Topic

> > Messages in this topic (24)

> > RECENT ACTIVITY: New Members 3 New Files 1

> > Visit Your Group

> > MARKETPLACE

>

October 10, 2011

I did ask her to define successful, and she said she meant elimination or

reduction in meds.

At that point the discussion returned to my own case, and she said since I

lacked other risk factors such as obesity, smoking, diabetes, sedentary

lifestyle, etc. - she anticipates no reason why adrenalectomy shouldn't be

" successful " for me, unless the length of time I've had PA has caused my

vascular structure to change.

Didn't ask about long-term follow-up but I wish I had thought of that! I will

try to remember to find out.

> > > > > > >

> > > > > > > > First I can understand Dr Grim's need to keep track of whats

what on this sight. In some ways the thumbnail can be the thing to do. How ever

not all want to put there medical history out there. While I for one have no

problem with this I do know from posting so information about my weight I got

what I thought was a distressful remark for all over weight people. I Also think

some that ask questions do not like it when we ask them to provide the meds and

labs as they do not give this information.

> > > > > > > >

> > > > > > > > If it it now going to be Dr Grim's policy to not answer

questiuns unless there is a thumbnail then thes nees to apply to every one so if

some like Val ask questions she needs to have a thumbnail for Dr Grim to reply

to it.

> > > > > > > >

> > > > > > > > Also if this is to be the policy it needs to be added to home

page of group site. This way all that want to join group will know they need to

supply one or if they do not want to give out part on the medical history then

decide to not join group.

> > > > > > > >

> > > > > > > > We need to remember this is a world wide group and not post any

thing that may be hurtful to any one. Have see some of this in past few weeks.

This also needs to be on home page with a warning as to how to deal with it.

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> > Reply to sender | Reply to group | Reply via web post | Start a New Topic

> > Messages in this topic (9)

> > RECENT ACTIVITY: New Members 3 New Files 1

> > Visit Your Group

>

October 10, 2011

Esp if the question is directed to me.CE Grim MD Good point. But I can pretty much guarantee you that if the resident expert MD expert was a surgeon he would be biased towards surgery, because that's what surgeons do. I say everyone should do your own due dilligence and decide if a 50% chance of a cure is good enough to warrant going through a surgical procedure or not. Not everyone has problems with spiro, it is usually well tolerated. But there's nothing biased about the DASH diet, everyone should be following it. The main problem I have with the group is that it seems to frequently get hijacked into subjects that have little or nothing to do with PA and then linger there for days. PA does not cause every little symptom we have. If I have a question related to PA I'll leave a thumbnail, otherwise I see no need. To: hyperaldosteronism Sent: Monday, October 10, 2011 3:48 PMSubject: Re: Time to rethink how to move forward with this group. Hester, you bring up some great points.I'm wondering if migrating the group to another platform, such as yuku.com, would be a better option. My experience with that platform is somewhat limited, but I do know it allows for setting up profiles and organizing threads by topic. One of the pheochromacytoma groups uses it; you can see their board here. (And, note to Dr. Grim - after I'm back from my surgery I would be more than happy to set up a board for us on that platform.)I have to say that early on I was ready to drop out of the group because of the bias toward one solution only, and that solution being DASH and meds. But I felt it important that if nothing else, I hung around to share my downside-of-spiro experience with the newbies, because their doctors are not likely going to warn them that they may end up with polymenorrhea or gynecomastia or depression like I did. I'm no doctor, but I don't believe that medicine is a one-size-fits-all approach, and I consider myself living proof.At any rate, once the surgery is behind me I have no intention of leaving the site - in fact, when my life becomes something other than constant doctor appointments and weekly blood draws, I hope to be able to so something to expand the web presence of Conn's syndrome/hyperaldosteronism. I've got a few ideas in mind but plan to start simple: a website detailing tests, resources, and treatment options. -msmith1928Nulliparous female, 46, 5'3", 120 lbs, polymenorrhea, hyperinsulinemia, hereditary fructose intolerance, lactose intolerance, probable gluten intolerance. Current meds are K 20 MEQ 4x/day, singulair 10mg, norethindrone .35mg to regulate polymenorrhea, cyclobenzaprine 5-10mg when needed, fexofenadine 180mg as needed. Low sodium, fructose- and grain-free diet. Known drug allergies include PCN, sulfa, tetracycline; spiro caused gynecomastia, polymenorrhea, depression, anxiety, and dizziness. 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); AVS determined disease is unilateral, left laparoscopic adrenalectomy is scheduled for 10/13/2011.> > > > > > > > > First I can understand Dr Grim's need to keep track of whats what on this sight. In some ways the thumbnail can be the thing to do. How ever not all want to put there medical history out there. While I for one have no problem with this I do know from posting so information about my weight I got what I thought was a distressful remark for all over weight people. I Also think some that ask questions do not like it when we ask them to provide the meds and labs as they do not give this information. > > > > > > > > > > If it it now going to be Dr Grim's policy to not answer questiuns unless there is a thumbnail then thes nees to apply to every one so if some like Val ask questions she needs to have a thumbnail for Dr Grim to reply to it. > > > > > > > > > > Also if this is to be the policy it needs to be added to home page of group site. This way all that want to join group will know they need to supply one or if they do not want to give out part on the medical history then decide to not join group.> > > > > > > > > > We need to remember this is a world wide group and not post any thing that may be hurtful to any one. Have see some of this in past few weeks. This also needs to be on home page with a warning as to how to deal with it. > > > > > > > > > > > > > > >> > > >> > > > > >> >>

October 10, 2011

Here is a search that might be worth a look at. Search for szurcio

Now We don't know the true out come of if what Dr grim guess was ended up being

the DX but since they stopped posting they must have get the answer.

This does show where giving medical information to group helps with DX the

information given in this case lead Dr grim to a guess it was renal artery

stenosis. If you read this can learn a bit about renal artery stenosis.

> > > > > > > >

> > > > > > > > > First I can understand Dr Grim's need to keep track of whats

what

> > > > on this sight. In some ways the thumbnail can be the thing to do. How

ever

> > > > not all want to put there medical history out there. While I for one

have no

> > > > problem with this I do know from posting so information about my weight

I

> > > > got what I thought was a distressful remark for all over weight people.

I

> > > > Also think some that ask questions do not like it when we ask them to

> > > > provide the meds and labs as they do not give this information.

> > > > > > > > >

> > > > > > > > > If it it now going to be Dr Grim's policy to not answer

questiuns

> > > > unless there is a thumbnail then thes nees to apply to every one so if

some

> > > > like Val ask questions she needs to have a thumbnail for Dr Grim to

reply to

> > > > it.

> > > > > > > > >

> > > > > > > > > Also if this is to be the policy it needs to be added to home

> > > > page of group site. This way all that want to join group will know they

need

> > > > to supply one or if they do not want to give out part on the medical

history

> > > > then decide to not join group.

> > > > > > > > >

> > > > > > > > > We need to remember this is a world wide group and not post

any

> > > > thing that may be hurtful to any one. Have see some of this in past few

> > > > weeks. This also needs to be on home page with a warning as to how to

deal

> > > > with it.

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> > Reply to sender | Reply to group | Reply via web post | Start a New Topic

>

October 10, 2011

Seems to me need to develop a standard 'thumbnail" any part of which can be left blank or filled in with DNCTR-do not care to reveal.If I were to set it up I would haveAge, gender, ethnic group, onset of HTN at age XX during XX. First HiBP was...My family Hx of HTN is .....My First Rx used was...but this was stopped because....Second Rx used was .... but this was stopped because....etc for all meds.I am very easy/difficult to get blood from.My first low K was x.x mM/LI was told my K was low because.....I do/do not eat licorice every day.My low K got better when....I began to have to get up to pee in xxxx. This maxed at XX x per night.This went away when I ....I first developed muscle cramps, numbness, tingling etc at age XXXXThis got better when I l..... My first renin was xx and my first blood aldo was xx (normals for this lab are .....I was no xxx drugs when this was done. My 24 hr urine Na, K and creatinine on the day this was done was>......I was first recommended a low sodium diet ...a DASH diet....I developed problems with thinking, accounting, memory at age..... I was told this was due to.....I have had to visit the ER xx times.The major reason I had to go was: anxiety, irregular heart beats, sob, edema, chest pain etc.The bump on my adrenal was first discovered at age...I was told ....As a start. But have other work to do tonight so others can help flush this out. I have no problem asking those who ask questions to be 'members' of the group and asking the 'member' to post answers to basic questions concerning themselves. Perhaps in a questionnaire format so the questions can be thought through by those members who are active or want to comment on the questions. For instance, age could be a range rather than a specific number. Weight perhaps the same. We would need, of course, the diagnoses if any and the medications and dosage. I don't see any way a meaningful answer (which is what we are all about, right?) could be posted without this info. It also comes to mind that whomever answers might want a brief signature tag mentioning their own history, even professional credentials if any.For instance I am: over 70malediagnoses, bi-lateral adrenal hyperplasia, 1992 Spirinolactone, 75mg/day until Jan 2011currently Eplerenone, 100mg/day plus a handful of other stuff from the cardiologist after open heart bypass surgery in 2008.A Medical Technologist since '62 and married to a Medical Technologist (which just makes me more of a pain to my docs!) What else? Is it important that I live in San , Texas? That I retired in 2002? that I weigh over 200? that I exercise regularly at a Gold's Gym pool under the guidance of a trainer? What else? Krebs (GranPaSmurf)

October 10, 2011

If you have a macmail account you can set up as many different signatures as you want. eg Welcome to the exciting world of Hyperaldosteronism You are in the right place! I am Dr. CE Grim a retired Professor of Medicine and Endocrinology. I have had a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963 as a 4th year medical student. I did a Nephrology Fellowship at Duke and an Endocrinology and Metabolism Fellowship with Dr. Conn (1969-70). I have been on the faculty of the University of MO, Indiana Univ, UCLA/ R. Drew, and the Medical College of Wisconsin in Divisions of Nephrology, Endocrinology, Hypertension, Cardiology and Epidemiology. I have published over 240 papers and book chapters in most areas of the broad discipline of High Blood Pressure. My CV is in our files for details. The GOAL of our group is to teach you and your health care team about the ins and outs of the causes, diagnosis and control of the many forms of hyperaldosteronism. The steps below will introduce you into the fascinating world of high blood pressure, salt and potassium and the role of the adrenal hormone aldosterone in health and disease. Doing these in sequence will save you time and effort in getting up to speed in taking control of you health and educating your own health care team. While we can’t make you a doctor we will make you into a pretty good BP doctor-a skill that you will have for life. 1. Overview: Read my article in our files on the evolution of PA (Evolution_of_PA-Grim.pdf ) and take to all members of health care team. Tell us what stage you believe you are in. This is a brief review of most causes of hyperaldosteronism, high blood pressure, low potassium (K). Be certain that you and your health care team understand the key role of excess diet salt in HTN and especially in PA. Go to: http://www.worldactiononsalt.com/evidence/treatment_trials.htm For a state of the art and science discussion of salt and health. 2. Other patients with hyperaldosteronism (Conn’s syndrome). Read our Conn's stories in our files and then give us your own in as much detail as you can. Dr. Conn was the first to describe this disease process and the syndrome is named after him. To see others' stories, on the Hyperaldosteronism home page, go to Files/Conn’s Stories. You'll find instructions in "A - How to put your story here.doc "Then send us your story in an email and then we will likely ask more questions and make suggestions before you upload it to our files. 3. Hyperaldosteronism and Salt: The deadly Duo. Eating Plan to control high blood pressure due to hyperaldosteronism and most others with high blood pressure. This will reduce your need for medications and in many will get your BP and K to goal without meds.. Get the DASH diet book by T. et al, read it and use it: $8 in paperback at your local bookstore. If they don’t have it ask them to order it for you. Learning to eat the DASH way will play a major role in your road to good BP and K control and, in many of our folks here, will revolutionize your life. Go to chapter 9 and do the 14 day challenge. Tell your Dr you are doing this as your BP may plummet if you are on other meds in only 2-3 days. or go to http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf download this 64 page booklet free and do the Week on the DASH Diet for 2 weeks. If you are on BP meds be prepared for a large fall in BP and let your Dr. know you are doing this. Or go to (but costs money) DASH Diet for Health ProgramThe DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week we will provide you with information on our website about food, food preparation, eating out, losing weight, getting fit and much more. In addition to providing new information each week on our website, we create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise.http://www.dashforhealth.com/ I strongly recommend you get the book and read it now! 4. Measure your BP: Measure your BP daily so you can see if it is getting better. If you are taking meds be sure to tell your health care team you are doing this as your BP may plummet to normal quickly. We recommend you use a device you listen to and will help you learn how to do this. If this is not something you want to do we can teach a significant other how to do it. See sharedcareinc.com or email to sharedcare@... to order a video on how to do this. If you already have one we will teach you how to teach your health care team how to validate your device. Your life and health depends on accurate BP measurements. Go to the amricanheart.org and download the Guidelines for Human Blood Pressure Measurement. Insist the your health care team do BP the AHA way. Your life is in the hands of those who measure your BP. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. 5. Genetics and your BP: Go to familyhistory.hhs.gov and do your detailed family medical history so we can review with you to help Dx familial causes of high blood pressure and heart disease. If BP runs in your family you may save lives in your family by checking their BP yourself. There is a brief discussion of this in my Evolution Article. 6. How to DX and treat PA: Go to our file/Conn's Articles of Note/Medications/Bravo spir 1973.pdf and read this article and take to your health care team. It is old but still one of the best in the medical management of PA. Also see our file from the Endocrine Society Guidelines on PA. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day. 1. Eat a high salt diet for 2 weeks-at least 4000 mg of Na a day.2. No BP meds in last 4-12 weeks depending on meds and Drs advice.3. Collect 24 hr urine for Na, K and creatinine and aldosterone. Do not lose a drop of this liquid gold. It is impossible to interpret the renin and aldo without this.4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldo and K using our guidelines to get an accurate K. Try to get this done about 1-4 hours after you have been out of bed.5. Send us the results with the normal values for your lab.6. If you ever have a salt (saline) infusion test for PA be certain to ask them to measure how much you pee during the 4 hours of the infusion. If it is 1-1.5 liter of urine it strongly suggests that you may have PA. If more tha 1.5 L you almost certainly have PA. I call this Dr. Grim’s “Quick Pee Test” for PA. Our PA Registry: If you have been Dxed with PA already and are on Rx or have had surgery please go to http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379 and complete our survey with as much information as you know. If there is some information you don't know ask us and we will help. If you need to update this as you journey thru the diagnostic/treatment process you can add another entry but label it as Nameyymmdd. For example today 4/20/11 for me would be Grim110420. This way of writing the date is an ever increasing number and will allow us and you to sort your multiple entries into a dated order. We are working on a more extensive database. 8. Learn the language: If you are new to medical lingo then download the acroyms from http://health.groups.yahoo.com/group/bloodpressureline/message/291869. Salt and high blood pressure: To learn the state of the science of salt and blood pressure please spend some time looking at http://www.worldactiononsalt.com/evidence/treatment_trials.htm10. Become a HBP expert consumer: Expect that it will take at least several weeks to get all this digested and to learn the new language of high blood pressure health care. As most doctors and nurses in practice have had very little training in high blood pressure you must become an expert yourself. For example most have never had anyone listen with them with a double stethoscope to verify that they can hear BP sounds. We cannot make you a doctor but we will make you a pretty good BP doctor.11. How High Blood Pressure should be managed: Go to nih.gov and download and read the Joint National Commission (JNC) Report 7 to get an overview on current guidelines. I ask all my secretaries to read this so they can communicate the importance of high blood pressure to my patients. JNC 8 will be out soon.Then: get (and study) the Hypertension Primer from americanheart.org. This is the most up-to-date compendium of what is known about high blood pressure and what every Dr. should know when they graduate from Medical School. Every chapter is only 2-3 pages. Read one chapter every week-night and you will finish it in about a year. I am working on a reading guide for lay people for the Primer. Stay tuned.12. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for.13. One-on-one Consulting: I can provide individual consulting if you do not want to go public. If you want individual one-on-one consulting for you and your Doctor contract me directly at lowerbp2@....May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACCBoard Certified in Internal Medicine, Geriatrics, and High Blood Pressure Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. Let me address how I handle the thumbnail. I created a document and stored it in a file which I keep reduced. I simply open it and hit ctrl/C (copy), the thumbnail is already highlighted, and reduce. This takes me back to my post where the thumbnail needs to be and hit ctrl/V (paste), waalla, all done. Mac users, TS, I don't speak your language! BTW, I don't believe many really read it, otherwise somebody would have wished me a happy b'day last week! - 65 yo morb. ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank pain. Treating with Meds. And DASH. . Current BP(last week ave): 125/73 Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, and PTSD. Meds: Duloxetine hcl 80 MG, Mirtazapine 7.5 MG, Metoprolol Tartrate 200 MG, 81mg asprin, Metformin 2000MG and Spironolactone 50 MG. > > > > > > > > > > > First I can understand Dr Grim's need to keep track of whats what on this sight. In some ways the thumbnail can be the thing to do. How ever not all want to put there medical history out there. While I for one have no problem with this I do know from posting so information about my weight I got what I thought was a distressful remark for all over weight people. I Also think some that ask questions do not like it when we ask them to provide the meds and labs as they do not give this information. > > > > > > > > > > > > If it it now going to be Dr Grim's policy to not answer questiuns unless there is a thumbnail then thes nees to apply to every one so if some like Val ask questions she needs to have a thumbnail for Dr Grim to reply to it. > > > > > > > > > > > > Also if this is to be the policy it needs to be added to home page of group site. This way all that want to join group will know they need to supply one or if they do not want to give out part on the medical history then decide to not join group. > > > > > > > > > > > > We need to remember this is a world wide group and not post any thing that may be hurtful to any one. Have see some of this in past few weeks. This also needs to be on home page with a warning as to how to deal with it. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

October 10, 2011

That leaves out most of us; statistically only 16% of computer users are on

Macs.

The only solution for the rest of us is, as others have said, to store our

thumbnail in an external doc and paste as needed. Not a big deal; like others

have noted I include mine when I feel it's relevant, and skip it when I feel

it's not.

> > > > > > >

> > > > > > > > First I can understand Dr Grim's need to keep track of

> > whats what on this sight. In some ways the thumbnail can be the

> > thing to do. How ever not all want to put there medical history out

> > there. While I for one have no problem with this I do know from

> > posting so information about my weight I got what I thought was a

> > distressful remark for all over weight people. I Also think some

> > that ask questions do not like it when we ask them to provide the

> > meds and labs as they do not give this information.

> > > > > > > >

> > > > > > > > If it it now going to be Dr Grim's policy to not answer

> > questiuns unless there is a thumbnail then thes nees to apply to

> > every one so if some like Val ask questions she needs to have a

> > thumbnail for Dr Grim to reply to it.

> > > > > > > >

> > > > > > > > Also if this is to be the policy it needs to be added to

> > home page of group site. This way all that want to join group will

> > know they need to supply one or if they do not want to give out part

> > on the medical history then decide to not join group.

> > > > > > > >

> > > > > > > > We need to remember this is a world wide group and not

> > post any thing that may be hurtful to any one. Have see some of this

> > in past few weeks. This also needs to be on home page with a warning

> > as to how to deal with it.

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

October 10, 2011

I don't feel asking newbies to try 14 days of an eating plan that will likely revolutionize their feeling of well being as not supportive or to spend $8 on a book that will likely do the same. Especially if they likely have the disease whose symptoms are classically driven by high aldo and a high salt, and low K diet.But again I like to recommend what, in my experience, helps the most folks. Some cannot do this and therefore may be better managed by surgery. But we don't really know which is the most on the average. And it is only a recommendation. But I also like to see evidence (in the urine) that they have made the changes that work the best in PA if one wants to avoid 4-6 meds for BP the rest of their life... This is the first time I've posted but felt compelled to add my agreement to the DASH or nothing approach being a turnoff to some in this group. I, too, was looking for a more supportive environment along with the education. I've "lurked" here for some time and have appreciated some of the insights I've picked up after being newly diagnosed with PA. I am also not terribly interested in posting private medical information for all to see but understand that I may not ask specific questions about my personal condition if I'm not willing to do so. Hester, you bring up some great points.I'm wondering if migrating the group to another platform, such as yuku.com, would be a better option. My experience with that platform is somewhat limited, but I do know it allows for setting up profiles and organizing threads by topic. One of the pheochromacytoma groups uses it; you can see their board here. (And, note to Dr. Grim - after I'm back from my surgery I would be more than happy to set up a board for us on that platform.) I have to say that early on I was ready to drop out of the group because of the bias toward one solution only, and that solution being DASH and meds. But I felt it important that if nothing else, I hung around to share my downside-of-spiro experience with the newbies, because their doctors are not likely going to warn them that they may end up with polymenorrhea or gynecomastia or depression like I did. I'm no doctor, but I don't believe that medicine is a one-size-fits-all approach, and I consider myself living proof. At any rate, once the surgery is behind me I have no intention of leaving the site - in fact, when my life becomes something other than constant doctor appointments and weekly blood draws, I hope to be able to so something to expand the web presence of Conn's syndrome/hyperaldosteronism. I've got a few ideas in mind but plan to start simple: a website detailing tests, resources, and treatment options. -msmith1928 Nulliparous female, 46, 5'3", 120 lbs, polymenorrhea, hyperinsulinemia, hereditary fructose intolerance, lactose intolerance, probable gluten intolerance. Current meds are K 20 MEQ 4x/day, singulair 10mg, norethindrone .35mg to regulate polymenorrhea, cyclobenzaprine 5-10mg when needed, fexofenadine 180mg as needed. Low sodium, fructose- and grain-free diet. Known drug allergies include PCN, sulfa, tetracycline; spiro caused gynecomastia, polymenorrhea, depression, anxiety, and dizziness. 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); AVS determined disease is unilateral, left laparoscopic adrenalectomy is scheduled for 10/13/2011.> > > > > > > > > First I can understand Dr Grim's need to keep track of whats what on this sight. In some ways the thumbnail can be the thing to do. How ever not all want to put there medical history out there. While I for one have no problem with this I do know from posting so information about my weight I got what I thought was a distressful remark for all over weight people. I Also think some that ask questions do not like it when we ask them to provide the meds and labs as they do not give this information. > > > > > > > > > > If it it now going to be Dr Grim's policy to not answer questiuns unless there is a thumbnail then thes nees to apply to every one so if some like Val ask questions she needs to have a thumbnail for Dr Grim to reply to it. > > > > > > > > > > Also if this is to be the policy it needs to be added to home page of group site. This way all that want to join group will know they need to supply one or if they do not want to give out part on the medical history then decide to not join group. > > > > > > > > > > We need to remember this is a world wide group and not post any thing that may be hurtful to any one. Have see some of this in past few weeks. This also needs to be on home page with a warning as to how to deal with it. > > > > > > > > > > > > > > >> > > >> > > > > >> >>

October 10, 2011

I do know the cat renal failure HTN group has over 10,000 members and they are not overloaded I dont think. Unless you try to read every message. CE Grim MD Yuku might be just an example and since I had never heard of it, I tried it. IMPO it is not professional strength! Every address I tried first produced an error (http500). When I hit refresh they usually came up, once I had to refresh twice. This a sign of system overload which often happens when something becomes too popular and owners can't or won't keep up. - 65 yo morb. ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank pain. Treating with Meds. And DASH. . Current BP(last week ave): 125/73 Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, and PTSD. Meds: Duloxetine hcl 80 MG, Mirtazapine 7.5 MG, Metoprolol Tartrate 200 MG, 81mg asprin, Metformin 2000MG and Spironolactone 50 MG. > > > > > > > > > > > First I can understand Dr Grim's need to keep track of whats > what on this sight. In some ways the thumbnail can be the thing to do. > How ever not all want to put there medical history out there. While I > for one have no problem with this I do know from posting so information > about my weight I got what I thought was a distressful remark for all > over weight people. I Also think some that ask questions do not like it > when we ask them to provide the meds and labs as they do not give this > information. > > > > > > > > > > > > If it it now going to be Dr Grim's policy to not answer > questiuns unless there is a thumbnail then thes nees to apply to every > one so if some like Val ask questions she needs to have a thumbnail for > Dr Grim to reply to it. > > > > > > > > > > > > Also if this is to be the policy it needs to be added to home > page of group site. This way all that want to join group will know they > need to supply one or if they do not want to give out part on the > medical history then decide to not join group. > > > > > > > > > > > > We need to remember this is a world wide group and not post > any thing that may be hurtful to any one. Have see some of this in past > few weeks. This also needs to be on home page with a warning as to how > to deal with it. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

October 10, 2011

And surgeons rarely publish their failures.CE Grim MD Regardless of the outcome of my upcoming surgery, there will be two of us fervently supporting it as an option, Hester. One thing I wanted to point out is a problem inherent to most forums: generally the only people who take the time to hang out and post are the ones who are not doing well. For every person on here who is posting about spiro and DASH, there may well be another person who came here, signed up, had their surgery, and is doing fine; the trouble is they don't stick around to follow up. > > > > > > > > > > > > > First I can understand Dr Grim's need to keep track of whats what on this sight. In some ways the thumbnail can be the thing to do. How ever not all want to put there medical history out there. While I for one have no problem with this I do know from posting so information about my weight I got what I thought was a distressful remark for all over weight people. I Also think some that ask questions do not like it when we ask them to provide the meds and labs as they do not give this information. > > > > > > > > > > > > > > If it it now going to be Dr Grim's policy to not answer questiuns unless there is a thumbnail then thes nees to apply to every one so if some like Val ask questions she needs to have a thumbnail for Dr Grim to reply to it. > > > > > > > > > > > > > > Also if this is to be the policy it needs to be added to home page of group site. This way all that want to join group will know they need to supply one or if they do not want to give out part on the medical history then decide to not join group. > > > > > > > > > > > > > > We need to remember this is a world wide group and not post any thing that may be hurtful to any one. Have see some of this in past few weeks. This also needs to be on home page with a warning as to how to deal with it. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

October 10, 2011

What would be my role in a blog?CE Grim MD ,The term 'blog' came from early Internet users, scientists usually, posting a log of their experiment logs to share with other investigators. Since it was on the Web, it was a 'Web log' which morphed into 'blog.' I mentioned the site I am webmaster for, it is made in WordPress which is a blog platform. There are others, but WordPress is high on the list.If we jump to another platform altogether, a Blog is the way to go.GPS I am going to step out on a limb and you can start sawing! (Maybe you are used to me talking about something I know nothing about!) I responded to Dr. Grim the other day about "teaching BP in kindergarten". In it I suggested something about a "Blog". I know almost nothing about it other than my son, a local H.S. Principal, is teaching a course and using it as the platform for his school to develop and deliver new courses. He suggested I go to: www.blogspot.com to get an understanding. Here is the first panel from the introduction: (bottom left) What's a blog? A blog is a personal diary. A daily pulpit. A collaborative space. A political soapbox. A breaking-news outlet. A collection of links. Your own private thoughts. Memos to the world. Your blog is whatever you want it to be. There are millions of them, in all shapes and sizes, and there are no real rules. In simple terms, a blog is a web site, where you write stuff on an ongoing basis. New stuff shows up at the top, so your visitors can read what's new. Then they comment on it or link to it or email you. Or not. Since Blogger was launched in 1999, blogs have reshaped the web, impacted politics, shaken up journalism, and enabled millions of people to have a voice and connect with others. And we're pretty sure the whole deal is just getting started. This only one example and there are many questions that need to be answered if we are going to proceed. - 65 yo morb. ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank pain. Treating with Meds. And DASH. . Current BP(last week ave): 125/73 Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, and PTSD. Meds: Duloxetine hcl 80 MG, Mirtazapine 7.5 MG, Metoprolol Tartrate 200 MG, 81mg asprin, Metformin 2000MG and Spironolactone 50 MG. > > > > > > > > > > > > > > > First I can understand Dr Grim's need to keep track of > whats > > > what on this sight. In some ways the thumbnail can be the thing to > do. > > > How ever not all want to put there medical history out there. While > I > > > for one have no problem with this I do know from posting so > information > > > about my weight I got what I thought was a distressful remark for > all > > > over weight people. I Also think some that ask questions do not like > it > > > when we ask them to provide the meds and labs as they do not give > this > > > information. > > > > > > > > > > > > > > > > If it it now going to be Dr Grim's policy to not answer > > > questiuns unless there is a thumbnail then thes nees to apply to > every > > > one so if some like Val ask questions she needs to have a thumbnail > for > > > Dr Grim to reply to it. > > > > > > > > > > > > > > > > Also if this is to be the policy it needs to be added to > home > > > page of group site. This way all that want to join group will know > they > > > need to supply one or if they do not want to give out part on the > > > medical history then decide to not join group. > > > > > > > > > > > > > > > > We need to remember this is a world wide group and not > post > > > any thing that may be hurtful to any one. Have see some of this in > past > > > few weeks. This also needs to be on home page with a warning as to > how > > > to deal with it. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

October 10, 2011

In general if you see a diffuse process *hyperplasia" in one of paired (or 4 in case of the parathyroid glands) endocrine glands you expect to see the same in all the other glands. See:This suggests an external (endogenous) factor like ACTH in Cushing's with bilateral hyperplasia. We now know that many Cushies are due to a micro adenoma(or many) in the pituitary gland or rately an ACTH secreting lung cancer that is the driving force. We do not know what causes the pit microadenoma or CA lung (well smoking mostly) in the first place. But most likely a mutation in a single cell that resulted in abnormal growth control in that cell. As it gets bigger it makes more hormone aka evolves. CE Grim MD But micronodules in the rest of the gland wouldn't necessarily mean they would be found in the *other* gland, would it? I understand your POV if what we're discussing is removing just the tumor (vs. the whole gland). I get that in your experience you have seen more bilaterals than unilaterals, and this correlates well with the research in general: IIRC the statistic is 60% of us are bilateral. Which (I remain hopeful!) means that 40% of us maybe can be cured via surgery. Maybe. > > > > > > > > > > > First I can understand Dr Grim's need to keep track of whats what on this sight. In some ways the thumbnail can be the thing to do. How ever not all want to put there medical history out there. While I for one have no problem with this I do know from posting so information about my weight I got what I thought was a distressful remark for all over weight people. I Also think some that ask questions do not like it when we ask them to provide the meds and labs as they do not give this information. > > > > > > > > > > > > If it it now going to be Dr Grim's policy to not answer questiuns unless there is a thumbnail then thes nees to apply to every one so if some like Val ask questions she needs to have a thumbnail for Dr Grim to reply to it. > > > > > > > > > > > > Also if this is to be the policy it needs to be added to home page of group site. This way all that want to join group will know they need to supply one or if they do not want to give out part on the medical history then decide to not join group. > > > > > > > > > > > > We need to remember this is a world wide group and not post any thing that may be hurtful to any one. Have see some of this in past few weeks. This also needs to be on home page with a warning as to how to deal with it. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

October 10, 2011

Might be might not be. Reason we need a good long term data base.CE Grim MD Even then there are so many variables. I think the outcomes for those of us who are otherwise healthy - not obese, nonsmokers, we exercise and don't eat junk - might be very different than, say, for someone who has other risk factors for HTN. > > > > > > > > > > > > > > > First I can understand Dr Grim's need to keep track of whats what on this sight. In some ways the thumbnail can be the thing to do. How ever not all want to put there medical history out there. While I for one have no problem with this I do know from posting so information about my weight I got what I thought was a distressful remark for all over weight people. I Also think some that ask questions do not like it when we ask them to provide the meds and labs as they do not give this information. > > > > > > > > > > > > > > > > If it it now going to be Dr Grim's policy to not answer questiuns unless there is a thumbnail then thes nees to apply to every one so if some like Val ask questions she needs to have a thumbnail for Dr Grim to reply to it. > > > > > > > > > > > > > > > > Also if this is to be the policy it needs to be added to home page of group site. This way all that want to join group will know they need to supply one or if they do not want to give out part on the medical history then decide to not join group. > > > > > > > > > > > > > > > > We need to remember this is a world wide group and not post any thing that may be hurtful to any one. Have see some of this in past few weeks. This also needs to be on home page with a warning as to how to deal with it. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic > > Messages in this topic (24) > > RECENT ACTIVITY: New Members 3 New Files 1 > > Visit Your Group > > MARKETPLACE >

October 10, 2011

In animals the damage done by excess salt and excess aldo quickly reverses..as in weeks. Most humans that have surgery do not follow a low sodium diet. So the salt/BP damage may regress more slowly.CE Grim MD I did ask her to define successful, and she said she meant elimination or reduction in meds. At that point the discussion returned to my own case, and she said since I lacked other risk factors such as obesity, smoking, diabetes, sedentary lifestyle, etc. - she anticipates no reason why adrenalectomy shouldn't be "successful" for me, unless the length of time I've had PA has caused my vascular structure to change. Didn't ask about long-term follow-up but I wish I had thought of that! I will try to remember to find out. > > > > > > > > > > > > > > > First I can understand Dr Grim's need to keep track of whats what on this sight. In some ways the thumbnail can be the thing to do. How ever not all want to put there medical history out there. While I for one have no problem with this I do know from posting so information about my weight I got what I thought was a distressful remark for all over weight people. I Also think some that ask questions do not like it when we ask them to provide the meds and labs as they do not give this information. > > > > > > > > > > > > > > > > If it it now going to be Dr Grim's policy to not answer questiuns unless there is a thumbnail then thes nees to apply to every one so if some like Val ask questions she needs to have a thumbnail for Dr Grim to reply to it. > > > > > > > > > > > > > > > > Also if this is to be the policy it needs to be added to home page of group site. This way all that want to join group will know they need to supply one or if they do not want to give out part on the medical history then decide to not join group. > > > > > > > > > > > > > > > > We need to remember this is a world wide group and not post any thing that may be hurtful to any one. Have see some of this in past few weeks. This also needs to be on home page with a warning as to how to deal with it. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic > > Messages in this topic (9) > > RECENT ACTIVITY: New Members 3 New Files 1 > > Visit Your Group >

October 10, 2011

I would call it at least an learned opinion or testable hypothesis and not really a "guess". But suppose its only a matter of degree.Someone who is a good at searching/summarizing our posts could probably write a book.CE Grim MDOn Oct 10, 2011, at 8:25 PM, Francis Bill SUSPECTED PA wrote: Here is a search that might be worth a look at. Search for szurcio Now We don't know the true out come of if what Dr grim guess was ended up being the DX but since they stopped posting they must have get the answer. This does show where giving medical information to group helps with DX the information given in this case lead Dr grim to a guess it was renal artery stenosis. If you read this can learn a bit about renal artery stenosis. > > > > > > > > > > > > > > > > > First I can understand Dr Grim's need to keep track of whats what > > > > on this sight. In some ways the thumbnail can be the thing to do. How ever > > > > not all want to put there medical history out there. While I for one have no > > > > problem with this I do know from posting so information about my weight I > > > > got what I thought was a distressful remark for all over weight people. I > > > > Also think some that ask questions do not like it when we ask them to > > > > provide the meds and labs as they do not give this information. > > > > > > > > > > > > > > > > > > If it it now going to be Dr Grim's policy to not answer questiuns > > > > unless there is a thumbnail then thes nees to apply to every one so if some > > > > like Val ask questions she needs to have a thumbnail for Dr Grim to reply to > > > > it. > > > > > > > > > > > > > > > > > > Also if this is to be the policy it needs to be added to home > > > > page of group site. This way all that want to join group will know they need > > > > to supply one or if they do not want to give out part on the medical history > > > > then decide to not join group. > > > > > > > > > > > > > > > > > > We need to remember this is a world wide group and not post any > > > > thing that may be hurtful to any one. Have see some of this in past few > > > > weeks. This also needs to be on home page with a warning as to how to deal > > > > with it. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic >

October 10, 2011

If I am not mistaken even lowly PCs can do mac mail but not my area of expertise.Seems like I am seeing a lot more Macs in airports than I used to.I would include iPhones, iPods, iPads as others who can use macmail. But i have not figured out how to have several signatures to choose form on my iPhone mail. Must be a way.Macs rule!CE Grim MD That leaves out most of us; statistically only 16% of computer users are on Macs. The only solution for the rest of us is, as others have said, to store our thumbnail in an external doc and paste as needed. Not a big deal; like others have noted I include mine when I feel it's relevant, and skip it when I feel it's not. > > > > > > > > > > > > > > > First I can understand Dr Grim's need to keep track of > > whats what on this sight. In some ways the thumbnail can be the > > thing to do. How ever not all want to put there medical history out > > there. While I for one have no problem with this I do know from > > posting so information about my weight I got what I thought was a > > distressful remark for all over weight people. I Also think some > > that ask questions do not like it when we ask them to provide the > > meds and labs as they do not give this information. > > > > > > > > > > > > > > > > If it it now going to be Dr Grim's policy to not answer > > questiuns unless there is a thumbnail then thes nees to apply to > > every one so if some like Val ask questions she needs to have a > > thumbnail for Dr Grim to reply to it. > > > > > > > > > > > > > > > > Also if this is to be the policy it needs to be added to > > home page of group site. This way all that want to join group will > > know they need to supply one or if they do not want to give out part > > on the medical history then decide to not join group. > > > > > > > > > > > > > > > > We need to remember this is a world wide group and not > > post any thing that may be hurtful to any one. Have see some of this > > in past few weeks. This also needs to be on home page with a warning > > as to how to deal with it. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

Sign In

Re: Time to rethink how to move forward with this group.

Recommended Posts

Guest guest

Link to comment

Share on other sites

Popular Days

Popular Days

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites