Re: Protocol for Diagnosing Conn's

[Guest guest]

It seems Farah got her ACTH in the middle of the sampling, instead of before it started. Have you been able to dig out your protocol?

Val

-----Original Message-----From: lowerbp2@... [mailto:lowerbp2@...]The data suggests by the way that you do not do the sampling before and after ACTH but just star the infusion when the pt comes down for the study and by the time they are ready the sampling can be done. They need to read the most current lit on using ACTH and adrenal vein sampling. I need to dig out our protocol and publish it on our site so pts can carry it into their "specialists" office.

[Guest guest]

Still looking-have just got a new Mac G4 Mini PB and transferring to my old one with a dead screen.

Yes as there are before and after samples but if she got ACTH it is curious that the cortisol did not go up.

current data suggests you do not gain anything by doing the before and after sampling. Just do it with ACTH going-saves time and money and risk.

In a message dated 4/29/05 1:27:10 AM, val@... writes:

It seems Farah got her ACTH in the middle of the sampling, instead of before it started.  Have you been able to dig out your protocol?

 

Val

-----Original Message-----

From: lowerbp2@... [mailto:lowerbp2@...]

The data suggests by the way that you do not do the sampling before and after ACTH but just star the infusion when the pt comes down for the study and by the time they are ready the sampling can be done.  They need to read the most current lit on using ACTH and adrenal vein sampling. 

I need to dig out our protocol and publish it on our site so pts can carry it into their "specialists" office. 

[Guest guest]

At ucsf they dont administer ACTH. When I learned about ACTH from Dr. Grim(Thanks Doc.), my husband and I took any info on ACTH with us to the appt. The radiologist told us they they dont have any studies on how ACTH would help them and they had gotten good results by not doing it(they have not done any research either tosee the difference). So, since we asked for it, . they had to order it and delayed my test for a couple of days, and they administered it in the middle of procedure. Now that we got the results Dr Duh mentioned that if we had not done the ACTH, he would have removed the right gland, but my results changed a lot after ACTH and I am now being treated as having BAH, will do another cat scan in 3 months to follow up.(Now I am wondering if my AVS results are accurate or not per Dr. Grim's suggestion) Its indeed so hard when you dont have any guidelines to compare the results with and since this is a fairly dangerous procedure, they dont repeat it. So for

now, its gonna be me, and my spiro getting along for a long time.

I am wondering if anyone else has their AVS results that that could post just to compare!

Thanks,

Farahlowerbp2@... wrote:

Still looking-have just got a new Mac G4 Mini PB and transferring to my old one with a dead screen. Yes as there are before and after samples but if she got ACTH it is curious that the cortisol did not go up.current data suggests you do not gain anything by doing the before and after sampling. Just do it with ACTH going-saves time and money and risk.In a message dated 4/29/05 1:27:10 AM, val@... writes:

It seems Farah got her ACTH in the middle of the sampling, instead of before it started. Have you been able to dig out your protocol? Val-----Original Message-----From: lowerbp2@... [mailto:lowerbp2@...]The data suggests by the way that you do not do the sampling before and after ACTH but just star the infusion when the pt comes down for the study and by the time they are ready the sampling can be done. They need to read the most current lit on using

ACTH and adrenal vein sampling. I need to dig out our protocol and publish it on our site so pts can carry it into their "specialists" office.Â

[Guest guest]

While I haven't actually seen my AVS results, I believe Dr. Grim may have mine (I asked my endo to send them to him). Dr. Grim, if you have them, you have my permission to post them.

Re: Re: Protocol for Diagnosing Conn's

At ucsf they dont administer ACTH. When I learned about ACTH from Dr. Grim(Thanks Doc.), my husband and I took any info on ACTH with us to the appt. The radiologist told us they they dont have any studies on how ACTH would help them and they had gotten good results by not doing it(they have not done any research either tosee the difference). So, since we asked for it, . they had to order it and delayed my test for a couple of days, and they administered it in the middle of procedure. Now that we got the results Dr Duh mentioned that if we had not done the ACTH, he would have removed the right gland, but my results changed a lot after ACTH and I am now being treated as having BAH, will do another cat scan in 3 months to follow up.(Now I am wondering if my AVS results are accurate or not per Dr. Grim's suggestion) Its indeed so hard when you dont have any guidelines to compare the results with and since this is a fairly dangerous procedure, they dont repeat it. So for now, its gonna be me, and my spiro getting along for a long time.

I am wondering if anyone else has their AVS results that that could post just to compare!

Thanks,

Farahlowerbp2@... wrote:

Still looking-have just got a new Mac G4 Mini PB and transferring to my old one with a dead screen. Yes as there are before and after samples but if she got ACTH it is curious that the cortisol did not go up.current data suggests you do not gain anything by doing the before and after sampling. Just do it with ACTH going-saves time and money and risk.In a message dated 4/29/05 1:27:10 AM, val@... writes:

It seems Farah got her ACTH in the middle of the sampling, instead of before it started. Have you been able to dig out your protocol? Val-----Original Message-----From: lowerbp2@... [mailto:lowerbp2@...]The data suggests by the way that you do not do the sampling before and after ACTH but just star the infusion when the pt comes down for the study and by the time they are ready the sampling can be done. They need to read the most current lit on using ACTH and adrenal vein sampling. I need to dig out our protocol and publish it on our site so pts can carry it into their "specialists" office.Â

[Guest guest]

Hi Dave:

I am seriously considering MAYO, my endo wants me to see another endo in ucsf, she says since my condition is so rare, perhaps a more experienced md who may have seen more than a few(I am her 2nd pt), may be able to help me more.

Farah

P.S. I finally found info on PA on mayo site. Fairly good site but not as detailed. It would really have helped me when I was first diagnosed with so many uncertainties.Dave <dave@...> wrote:

Now I know why the researcher I know there (outside the clinical dept, but working on HTN related study) said I might want to o to Mayo.DaveOn Apr 29, 2005, at 11:06 AM, Farah Rahbar wrote:> At ucsf they dont administer ACTH. When I learned about ACTH from Dr. > Grim(Thanks Doc.), my husband and I took any info on ACTH with us to > the appt. The radiologist told us they they dont have any studies on > how ACTH would help them and they had gotten good results by not doing > it(they have not done any research either tosee the difference). So, > since we asked for it, . they had to order it and delayed my test for > a couple of days, and they administered it in the middle of > procedure. Now that we got the results Dr Duh mentioned that if we > had not done the ACTH, he would have removed the

right gland, but my > results changed a lot after ACTH and I am now being treated as having > BAH, will do another cat scan in 3 months to follow up.(Now I am > wondering if my AVS results are accurate or not per Dr. Grim's > suggestion) Its indeed so hard when you dont have any guidelines to > compare the results with and since this is a fairly dangerous > procedure, they dont repeat it. So for now, its gonna be me, and my > spiro getting along for a long time. > I am wondering if anyone else has their AVS results that that could > post just to compare!> > Thanks,> Farah>> lowerbp2@... wrote:>> Still looking-have just got a new Mac G4 Mini PB and transferring to >> my old one with a dead screen.>>>> Yes as there are before and after samples but if she got ACTH it is >> curious that the cortisol did

not go up.>>>> current data suggests you do not gain anything by doing the before >> and after sampling. Just do it with ACTH going-saves time and money >> and risk.>>>>>> In a message dated 4/29/05 1:27:10 AM, val@... writes:>>>>>>> It seems Farah got her ACTH in the middle of the sampling, instead >>> of before it started. Have you been able to dig out your protocol?>>>  >>>>>> Val>>> -----Original Message----->>> From: lowerbp2@... [mailto:lowerbp2@...]>>>>>> The data suggests by the way that you do not do the sampling before >>> and after ACTH but just star the infusion when the pt comes down for >>> the study and by the time they are ready the sampling can be done. >>> They need to read the most

current lit on using ACTH and adrenal >>> vein sampling. >>>>>> I need to dig out our protocol and publish it on our site so pts can >>> carry it into their "specialists" office. >>>>>>>>>>>>>

[Guest guest]

In a message dated 4/29/05 10:22:32 PM, farahbar@... writes:

Now that we got the results Dr Duh mentioned that if we

> had not done the ACTH, he would have removed the right gland, but my

> results changed a lot after ACTH and I am now being treated as having

> BAH, will do another cat scan in 3 months to follow up.

This is the reason I (and others) have been doing ACTH for years.

Cant see any good reason to repeat cat scan. Just see how BP and K do with ABs.

An Endo who has only see 2 cases of PA should not be calling themselves an Endo in my opinion. HTN is the most common Endocrine disease-IMHO.

CEG

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHACHBPR

Charter member of American Society of Hypertension(ASH) and the International Society for Hypertension in Blacks (ISHIB).

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts

in the area of high blood pressure epidemiology, physiology, endocrinology, measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the

History and Physiology of High Blood pressure in the African Diaspora

Member of the Board of Directors, ISHIB

[Guest guest]

AVS I will need to dig them out from Medical Records. Maybe a week or so.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHACHBPR

Charter member of American Society of Hypertension(ASH) and the International Society for Hypertension in Blacks (ISHIB).

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts

in the area of high blood pressure epidemiology, physiology, endocrinology, measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the

History and Physiology of High Blood pressure in the African Diaspora

Member of the Board of Directors, ISHIB