Re: Any side effects of living with 1 adrenal gland after surgery?

[Guest guest]

Ask if you can talk to all the other patients they have operated on 5, 10 and 15 years ago. just to be sure of their cure rate. I do not know how old you are or any other information about how you are doing to give advice.But if doing well and DASHing I recommend not doing surgery esp if you do not have an AVS that will increase the likelyhood of success or failure.CE Grim MDOn Feb 8, 2012, at 4:35 AM, Chambers wrote: Thanks for your reply..I've been told that the chance of developing an adenoma on the other side is unlikely. Is this not the case?! If i AM likely to develop an adenoma on the other side, then is a unilateral adrenelectomy still worth doing? Or is it better just to manage on Spironolactone?They don't seem sure whether to do AVS, and seem to be happy to do the surgery just with the results of my cortisol, high aldosterone and low renin readings. Have also had a 24hr urine. From: Francis Bill SUSPECTED PA <georgewbill@...> hyperaldosteronism Sent: Wednesday, 8 February 2012, 11:32 Subject: Re: Any side effects of living with 1 adrenal gland after surgery? From what I under stand what Dr grim says. If you have more then one adenoma on the same side then you most likey have them on the other side or soon will have. Do you have your AVS report? > > I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! > I'm now taking Spironolactone prior to surgery and still feel great. > > Do you have to have the surgery?! I have two small adenoma's in my left adrenal. >

[Guest guest]

Need to uploat this to our AVS files.CE Grim MDOn Feb 8, 2012, at 9:37 AM, Francis Bill SUSPECTED PA wrote: Look at this study and then decide if you should have AVS. But only would have AVS if you still think surgery is your best option. Systematic review: diagnostic procedures to differentiate unilateral from bilateral adrenal abnormality in primary aldosteronism. Kempers MJ, Lenders JW, van Outheusden L, van der Wilt GJ, Schultze Kool LJ, Hermus AR, Deinum J. SourceRadboud University Nijmegen Medical Centre, Nijmegen, the Netherlands. Abstract BACKGROUND: Computed tomography (CT), magnetic resonance imaging (MRI), and adrenal vein sampling (AVS) are used to distinguish unilateral from bilateral increased aldosterone secretion as a cause of primary aldosteronism. This distinction is crucial because unilateral primary aldosteronism can be treated surgically, whereas bilateral primary aldosteronism should be treated medically. PURPOSE: To determine the proportion of patients with primary aldosteronism whose CT or MRI results with regard to unilateral or bilateral adrenal abnormality agreed or did not agree with those of AVS. DATA SOURCES: PubMed, MEDLINE, EMBASE, and Cochrane Library, 1977 to April 2009. STUDY SELECTION: Studies describing adults with primary aldosteronism who underwent CT/MRI and AVS were included. Of 472 initially identified studies, 38 met the selection criteria; extractable data were available for 950 patients. DATA EXTRACTION: The CT/MRI result was considered accurate when AVS showed unilaterally increased aldosterone secretion on the same side as the abnormality seen on CT/MRI or when AVS showed symmetric aldosterone secretion and CT/MRI revealed bilateral or no unilateral abnormality. DATA SYNTHESIS: In 37.8% of patients (359 of 950), CT/MRI results did not agree with AVS results. If only CT/MRI results had been used to determine lateralization of an adrenal abnormality, inappropriate adrenalectomy would have occurred in 14.6% of patients (where AVS showed a bilateral problem), inappropriate exclusion from adrenalectomy would have occurred in 19.1% (where AVS showed unilateral secretion), and adrenalectomy on the wrong side would have occurred in 3.9% (where AVS showed aldosterone secretion on the opposite side). LIMITATION: The lack of follow-up data in the included articles made it impossible to confirm that adrenalectomies were performed appropriately. CONCLUSION: When AVS is used as the criterion standard test for diagnosing laterality of aldosterone secretion in patients with primary aldosteronism, CT/MRI misdiagnosed the cause of primary aldosteronism in 37.8% of patients. Relying only on CT/MRI may lead to inappropriate treatment of patients with primary aldosteronism > > > > I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! > > I'm now taking Spironolactone prior to surgery and still feel great. > > > > Do you have to have the surgery?! I have two small adenoma's in my left adrenal. > > >

[Guest guest]

Unless the pathologist is an adrenal expert they dont usually bother to look at the rest of the gland. I would be happy to look at the slides if you can get them to me. CE Grim MDOn Feb 8, 2012, at 12:07 PM, Lucy Sage wrote: FWIW, I had an Adx without trying spiro or ephler. because: (1) it was what my endo recommended (my nepro when asked what she would do if she were me, said she would try spiro); (2) my K was so low that I was taking 175 MEQ of K & it seemed like most on spiro or ephler still needed K supplements; (3) I have chronic gastritis which flared up from the K, & a side effect of MCBs is stomach issues; (4) I am 59 & I did not want to wait for another year (trying MCBs) to have the Adx; & (5) most of the literature I read, primarily from this site recommended it. That bring said, had I known or seen studies that showed that other adrenal eventually is affected with PA, I likely would have tried MCBs first. The idea that Adx is not reversible is compelling reason to try medical route. Nonetheless, I don't like to take medication & my gut feeling was to have the Adx. However, I would not have had an Adx without an AVS. Every abstract I read recomends it. Just because there is an adenoma in my adrenal does not mean there is not one in the other adrenal or that the adenoma is the problem. My AVS cost my insurance around $5,000. My Adx cost around $20,000. Lucy Sage Adx Sept. 2012 Path report showed 6 x 7 mm nonmalignent cortical adenoma Please forgive brevity & typos Sent from my droid <jclark24p@...> wrote: >Hi , the short answer is NO, in fact Dr. Grim advocates the medical approach and the DASH eating plan. > >I don't know your story, comorbid conditions, BP, age, etc. (I have done a lot of research and am in fact in the process of seeing if I am candidate for surgery, I have tumor in my right adrenal.) > >I had all the symptoms you reported and a few more (T2DM, COPD, f/t Oxygen, ect.) BP was well controlled for 18 months and everything was well controlled for 7 (it took me 10 months to figure DASH and get my NA under control.) I was real excited the day they loaded my oxygen tanks, all 42 of them, on the truck and I was no longer tethered to a plastic hose! (The low oxygen was caused by LVH which resolved after 12 weeks!) All this was on 25MG bid of Spironolactone and DASH! Gynecomstia got bad enough from low testosterone, caused by spiro sometimes in males, that I had to change. > >I usually don't make recommendations but if I was doing it and well controlled on spiro w/o adverse SX, I'd stay the course, start DASHing if you haven't already. You can always have surgery later if necessary but you can't do the reverse once the adrenal is removed! > >Hope this helps, keep us posted and welcome aboard! > > - 65 yo super ob., fastidious male - 12mm X 13mm rt. a.adnoma with previous rt. flank pain. Treating with DASH. Stats w/o meds = BP 175/90 HR 59 BS 125. D/C Spironolactone 12/20/2011 due to adverse SX. >Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, Gynecomastia, MDD and PTSD. >Meds: Duloxetine hcl 80 MG, Metoprolol Tartrate 200 MG, AmlodipineBesylate 5mg, 81mg aspirin and Metformin 2000MG. Started washing Spironolactone 12/20/11 to prepare for AVS. > > > >> >> I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? >> Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! >> I'm now taking Spironolactone prior to surgery and still feel great. >> >> Do you have to have the surgery?! I have two small adenoma's in my left adrenal. >> > >

[Guest guest]

Hmmm. see why I reommend DASH and meds? Keep us posted. I would be DASHing like my life depended on it.CE Grim MDOn Feb 8, 2012, at 12:14 PM, wrote: I have a problem with this review due to the quality and lack of control of the input. I believe there were major inhancements made to the scanning equipment in the 33 years this review covered. They also made no attempt to qualify the human factor or even identify if the protocol changed! I think we are all in agreement that more experience is usually better. I also think the decision as to whether you will have surgery is a lot more complicated than just deciding if you think it is your best option. If the DX is confirmed via labs and ct-scan that you have PA, the best time to do an AVS is before you start MCBs. You still don't know if or how well meds and dash will work. (Cost is definate factor.) I can assure you that treating and watching everything resolve and then watching everything fall apart sucks! (The last two times they have checked my oxygen it was down to 90 where it was 94 6 weeks ago!) Sometimes the known is worse than the unknown! > > > > > > I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? > > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! > > > I'm now taking Spironolactone prior to surgery and still feel great. > > > > > > Do you have to have the surgery?! I have two small adenoma's in my left adrenal. > > > > > >

[Guest guest]

Oh, I see but you don't put enough value on QOL issues!

PTN: " Doctor, if I give up wine, women and song will I live longer? "

DOCTOR: " I don't know but it sure as hell will seem longer! " ;>)

> > > > >

> > > > > I have recently been diagnosed with Conn's, and am due for

> > surgery shortly. However having read about so many people still

> > having lots of the same symptoms post-surgery. I'm wondering whether

> > the surgery is actually worth it!??

> > > > > Having felt dreadful (Chronic fatigue, heart arythmia's,

> > swelling and pain in my legs, brain fog, unable to socialise or

> > concentrate on anything!)for many years, then taking potassium to

> > correct my levels, i feel completely normal again!

> > > > > I'm now taking Spironolactone prior to surgery and still feel

> > great.

> > > > >

> > > > > Do you have to have the surgery?! I have two small adenoma's

> > in my left adrenal.

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Thx. I will see if I can obtain them.

Lucy Sage

Please forgive brevity & typos

Sent from my droid

Clarence Grim <lowerbp2@...> wrote:

>Unless the pathologist is an adrenal expert they dont usually bother

>to look at the rest of the gland. I would be happy to look at the

>slides if you can get them to me.

>

>CE Grim MD

>On Feb 8, 2012, at 12:07 PM, Lucy Sage wrote:

>

>> FWIW, I had an Adx without trying spiro or ephler. because: (1) it

>> was what my endo recommended (my nepro when asked what she would do

>> if she were me, said she would try spiro); (2) my K was so low that

>> I was taking 175 MEQ of K & it seemed like most on spiro or ephler

>> still needed K supplements; (3) I have chronic gastritis which

>> flared up from the K, & a side effect of MCBs is stomach issues; (4)

>> I am 59 & I did not want to wait for another year (trying MCBs) to

>> have the Adx; & (5) most of the literature I read, primarily from

>> this site recommended it. That bring said, had I known or seen

>> studies that showed that other adrenal eventually is affected with

>> PA, I likely would have tried MCBs first. The idea that Adx is not

>> reversible is compelling reason to try medical route. Nonetheless, I

>> don't like to take medication & my gut feeling was to have the Adx.

>> However, I would not have had an Adx without an AVS. Every abstract

>> I read recomends it. Just because there is an adenoma in my adrenal

>> does not mean there is not one in the other adrenal or that the

>> adenoma is the problem. My AVS cost my insurance around $5,000. My

>> Adx cost around $20,000.

>>

>> Lucy Sage

>> Adx Sept. 2012

>> Path report showed 6 x 7 mm nonmalignent cortical adenoma

>>

>> Please forgive brevity & typos

>> Sent from my droid

>>

>> <jclark24p@...> wrote:

>>

>> >Hi , the short answer is NO, in fact Dr. Grim advocates the

>> medical approach and the DASH eating plan.

>> >

>> >I don't know your story, comorbid conditions, BP, age, etc. (I have

>> done a lot of research and am in fact in the process of seeing if I

>> am candidate for surgery, I have tumor in my right adrenal.)

>> >

>> >I had all the symptoms you reported and a few more (T2DM, COPD, f/t

>> Oxygen, ect.) BP was well controlled for 18 months and everything

>> was well controlled for 7 (it took me 10 months to figure DASH and

>> get my NA under control.) I was real excited the day they loaded my

>> oxygen tanks, all 42 of them, on the truck and I was no longer

>> tethered to a plastic hose! (The low oxygen was caused by LVH which

>> resolved after 12 weeks!) All this was on 25MG bid of Spironolactone

>> and DASH! Gynecomstia got bad enough from low testosterone, caused

>> by spiro sometimes in males, that I had to change.

>> >

>> >I usually don't make recommendations but if I was doing it and well

>> controlled on spiro w/o adverse SX, I'd stay the course, start

>> DASHing if you haven't already. You can always have surgery later if

>> necessary but you can't do the reverse once the adrenal is removed!

>> >

>> >Hope this helps, keep us posted and welcome aboard!

>> >

>> > - 65 yo super ob., fastidious male - 12mm X 13mm rt. a.adnoma

>> with previous rt. flank pain. Treating with DASH. Stats w/o meds =

>> BP 175/90 HR 59 BS 125. D/C Spironolactone 12/20/2011 due to adverse

>> SX.

>> >Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2,

>> Gynecomastia, MDD and PTSD.

>> >Meds: Duloxetine hcl 80 MG, Metoprolol Tartrate 200 MG,

>> AmlodipineBesylate 5mg, 81mg aspirin and Metformin 2000MG. Started

>> washing Spironolactone 12/20/11 to prepare for AVS.

>> >

>> >

>> >

>> >>

>> >> I have recently been diagnosed with Conn's, and am due for

>> surgery shortly. However having read about so many people still

>> having lots of the same symptoms post-surgery. I'm wondering whether

>> the surgery is actually worth it!??

>> >> Having felt dreadful (Chronic fatigue, heart arythmia's, swelling

>> and pain in my legs, brain fog, unable to socialise or concentrate

>> on anything!)for many years, then taking potassium to correct my

>> levels, i feel completely normal again!

>> >> I'm now taking Spironolactone prior to surgery and still feel

>> great.

>> >>

>> >> Do you have to have the surgery?! I have two small adenoma's in

>> my left adrenal.

>> >>

>> >

>> >

>>

>

[Guest guest]

The choice is always yours. As Dr.Kempner used to say: I offer you your life in this hand and the salt shaker in the other. The choice is yours. This was when there were NO medications for HTN. Many that were referred to Duke at that time had a prognosis of less that a year. You might want to go the the ricediet.com site and look at some of his reprints. Esp NY Acad of Sci one with pictures. CE Grim MDOn Feb 9, 2012, at 3:34 AM, wrote: Oh, I see but you don't put enough value on QOL issues! PTN: "Doctor, if I give up wine, women and song will I live longer?" DOCTOR: "I don't know but it sure as hell will seem longer!" ;>) > > > > > > > > > > I have recently been diagnosed with Conn's, and am due for > > surgery shortly. However having read about so many people still > > having lots of the same symptoms post-surgery. I'm wondering whether > > the surgery is actually worth it!?? > > > > > Having felt dreadful (Chronic fatigue, heart arythmia's, > > swelling and pain in my legs, brain fog, unable to socialise or > > concentrate on anything!)for many years, then taking potassium to > > correct my levels, i feel completely normal again! > > > > > I'm now taking Spironolactone prior to surgery and still feel > > great. > > > > > > > > > > Do you have to have the surgery?! I have two small adenoma's > > in my left adrenal. > > > > > > > > > > > > > > > > >

[Guest guest]

If she has two small adenoma's in my left adrenal how likey is it that the other

side will also have one?

> > >

> > > I have recently been diagnosed with Conn's, and am due for surgery

> > shortly. However having read about so many people still having lots

> > of the same symptoms post-surgery. I'm wondering whether the surgery

> > is actually worth it!??

> > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling

> > and pain in my legs, brain fog, unable to socialise or concentrate

> > on anything!)for many years, then taking potassium to correct my

> > levels, i feel completely normal again!

> > > I'm now taking Spironolactone prior to surgery and still feel great.

> > >

> > > Do you have to have the surgery?! I have two small adenoma's in my

> > left adrenal.

> > >

> >

> >

> >

> >

> >

>

[Guest guest]

This is all ready in there.

> > > >

> > > > I have recently been diagnosed with Conn's, and am due for

> > surgery shortly. However having read about so many people still

> > having lots of the same symptoms post-surgery. I'm wondering whether

> > the surgery is actually worth it!??

> > > > Having felt dreadful (Chronic fatigue, heart arythmia's,

> > swelling and pain in my legs, brain fog, unable to socialise or

> > concentrate on anything!)for many years, then taking potassium to

> > correct my levels, i feel completely normal again!

> > > > I'm now taking Spironolactone prior to surgery and still feel

> > great.

> > > >

> > > > Do you have to have the surgery?! I have two small adenoma's in

> > my left adrenal.

> > > >

> > >

> >

> >

>

[Guest guest]

Hi All,Please could you explain why AVS is so crucial for correct diagnosis? I've just been told i have two adrenal adenoma's (Left side) which have been identified by a CT scan, Renin and Aldosterone blood tests taken at the end of a 24hr urine sample i.e starting between 8-9am, and included 5 blood samples taken at various times and doing various things such as lying down, walking around etc (Obviously this test has a particular name, but excuse my ignorance and basic knowledge!)These tests have shown that my Aldosterone levels are very high. I have been prescribed Spironolactone in an attempt to stabilise my high BP (which fluctuates constantly) and my heart arythmias, prior to surgery.My potassium level is currently within normal range, but has previously been dangerously low. My

Endocrinologist has said himself that he is NOT experienced with diagnosing PA.Clearly i would prefer not to have surgery if there is another way of managing this. I am as yet unfamiliar with The DASH diet. I also have Coeliac disease so already have a slightly limited diet.Many thanks From: Francis Bill SUSPECTED PA <georgewbill@...> hyperaldosteronism Sent: Thursday, 9 February 2012, 15:47 Subject:

Re: Any side effects of living with 1 adrenal gland after surgery?

If she has two small adenoma's in my left adrenal how likey is it that the other side will also have one?

> > >

> > > I have recently been diagnosed with Conn's, and am due for surgery

> > shortly. However having read about so many people still having lots

> > of the same symptoms post-surgery. I'm wondering whether the surgery

> > is actually worth it!??

> > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling

> > and pain in my legs, brain fog, unable to socialise or concentrate

> > on anything!)for many years, then taking potassium to correct my

> > levels, i feel completely normal again!

> > > I'm now taking Spironolactone prior to surgery and still feel great.

> > >

> > > Do you have to have the surgery?! I have two small adenoma's in my

> > left adrenal.

> > >

> >

> >

> >

> >

> >

>

[Guest guest]

ok thank you very much. I am beginning to understand, but what a complicated condition this is! I'm going to do some further file reading..... From: Francis Bill SUSPECTED PA <georgewbill@...> hyperaldosteronism Sent: Thursday, 9 February 2012, 16:20 Subject:

Re: Any side effects of living with 1 adrenal gland after surgery?

This is all ready in there.

> > > >

> > > > I have recently been diagnosed with Conn's, and am due for

> > surgery shortly. However having read about so many people still

> > having lots of the same symptoms post-surgery. I'm wondering whether

> > the surgery is actually worth it!??

> > > > Having felt dreadful (Chronic fatigue, heart arythmia's,

> > swelling and pain in my legs, brain fog, unable to socialise or

> > concentrate on anything!)for many years, then taking potassium to

> > correct my levels, i feel completely normal again!

> > > > I'm now taking Spironolactone prior to surgery and still feel

> > great.

> > > >

> > > > Do you have to have the surgery?! I have two small adenoma's in

> > my left adrenal.

> > > >

> > >

> >

> >

>

[Guest guest]

Go to files and read DashEatingPlan.pdf. May have to change it to fit your diet

restrictions. Goal is eat 4700 mg of potassium and reduce sodium to 1500 MG or

less a day.

> > > >

> > > > I have recently been diagnosed with Conn's, and am due for surgery

> > > shortly. However having read about so many people still having lots

> > > of the same symptoms post-surgery. I'm wondering whether the surgery

> > > is actually worth it!??

> > > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling

> > > and pain in my legs, brain fog, unable to socialise or concentrate

> > > on anything!)for many years, then taking potassium to correct my

> > > levels, i feel completely normal again!

> > > > I'm now taking Spironolactone prior to surgery and still feel great.

> > > >

> > > > Do you have to have the surgery?! I have two small adenoma's in my

> > > left adrenal.

> > > >

> > >

> > >

> > >

> > >

> > >

> >

>

[Guest guest]

My bet is at least 90%. CE Grim MDOn Feb 9, 2012, at 7:47 AM, Francis Bill SUSPECTED PA wrote: If she has two small adenoma's in my left adrenal how likey is it that the other side will also have one? > > > > > > I have recently been diagnosed with Conn's, and am due for surgery > > shortly. However having read about so many people still having lots > > of the same symptoms post-surgery. I'm wondering whether the surgery > > is actually worth it!?? > > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling > > and pain in my legs, brain fog, unable to socialise or concentrate > > on anything!)for many years, then taking potassium to correct my > > levels, i feel completely normal again! > > > I'm now taking Spironolactone prior to surgery and still feel great. > > > > > > Do you have to have the surgery?! I have two small adenoma's in my > > left adrenal. > > > > > > > > > > > > > >

[Guest guest]

Have you read the evolution of PA article yet?CE Grim MDOn Feb 9, 2012, at 9:00 AM, Chambers wrote: ok thank you very much. I am beginning to understand, but what a complicated condition this is! I'm going to do some further file reading..... From: Francis Bill SUSPECTED PA <georgewbill@...> hyperaldosteronism Sent: Thursday, 9 February 2012, 16:20 Subject: Re: Any side effects of living with 1 adrenal gland after surgery? This is all ready in there. > > > > > > > > I have recently been diagnosed with Conn's, and am due for > > surgery shortly. However having read about so many people still > > having lots of the same symptoms post-surgery. I'm wondering whether > > the surgery is actually worth it!?? > > > > Having felt dreadful (Chronic fatigue, heart arythmia's, > > swelling and pain in my legs, brain fog, unable to socialise or > > concentrate on anything!)for many years, then taking potassium to > > correct my levels, i feel completely normal again! > > > > I'm now taking Spironolactone prior to surgery and still feel > > great. > > > > > > > > Do you have to have the surgery?! I have two small adenoma's in > > my left adrenal. > > > > > > > > > > > >

[Guest guest]

Just do the diet you are doing but limit total sodium to 1500 mg and increase K to 4700 mg.CE Grim MDOn Feb 9, 2012, at 9:14 AM, Francis Bill SUSPECTED PA wrote: Go to files and read DashEatingPlan.pdf. May have to change it to fit your diet restrictions. Goal is eat 4700 mg of potassium and reduce sodium to 1500 MG or less a day. > > > > > > > > I have recently been diagnosed with Conn's, and am due for surgery > > > shortly. However having read about so many people still having lots > > > of the same symptoms post-surgery. I'm wondering whether the surgery > > > is actually worth it!?? > > > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling > > > and pain in my legs, brain fog, unable to socialise or concentrate > > > on anything!)for many years, then taking potassium to correct my > > > levels, i feel completely normal again! > > > > I'm now taking Spironolactone prior to surgery and still feel great. > > > > > > > > Do you have to have the surgery?! I have two small adenoma's in my > > > left adrenal. > > > > > > > > > > > > > > > > > > > > > >

[Guest guest]

bumps tell you nothing about what the bump is. It can be a lipoma or a non functioning adenoma or an aldo prouducing bump. if there are two on one side prob of hyperplasia is higher. AVS tells your team if taking out the bump will help your problem.CE Grim MDOn Feb 9, 2012, at 8:22 AM, Chambers wrote: Hi All,Please could you explain why AVS is so crucial for correct diagnosis? I've just been told i have two adrenal adenoma's (Left side) which have been identified by a CT scan, Renin and Aldosterone blood tests taken at the end of a 24hr urine sample i.e starting between 8-9am, and included 5 blood samples taken at various times and doing various things such as lying down, walking around etc (Obviously this test has a particular name, but excuse my ignorance and basic knowledge!)These tests have shown that my Aldosterone levels are very high. I have been prescribed Spironolactone in an attempt to stabilise my high BP (which fluctuates constantly) and my heart arythmias, prior to surgery.My potassium level is currently within normal range, but has previously been dangerously low. My Endocrinologist has said himself that he is NOT experienced with diagnosing PA.Clearly i would prefer not to have surgery if there is another way of managing this. I am as yet unfamiliar with The DASH diet. I also have Coeliac disease so already have a slightly limited diet.Many thanks From: Francis Bill SUSPECTED PA <georgewbill@...> hyperaldosteronism Sent: Thursday, 9 February 2012, 15:47 Subject: Re: Any side effects of living with 1 adrenal gland after surgery? If she has two small adenoma's in my left adrenal how likey is it that the other side will also have one? > > > > > > I have recently been diagnosed with Conn's, and am due for surgery > > shortly. However having read about so many people still having lots > > of the same symptoms post-surgery. I'm wondering whether the surgery > > is actually worth it!?? > > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling > > and pain in my legs, brain fog, unable to socialise or concentrate > > on anything!)for many years, then taking potassium to correct my > > levels, i feel completely normal again! > > > I'm now taking Spironolactone prior to surgery and still feel great. > > > > > > Do you have to have the surgery?! I have two small adenoma's in my > > left adrenal. > > > > > > > > > > > > > >

[Guest guest]

If there are two on one side what are the odds of it being MENs Syndrome?

> > > > >

> > > > > I have recently been diagnosed with Conn's, and am due for

> > surgery

> > > > shortly. However having read about so many people still having

> > lots

> > > > of the same symptoms post-surgery. I'm wondering whether the

> > surgery

> > > > is actually worth it!??

> > > > > Having felt dreadful (Chronic fatigue, heart arythmia's,

> > swelling

> > > > and pain in my legs, brain fog, unable to socialise or concentrate

> > > > on anything!)for many years, then taking potassium to correct my

> > > > levels, i feel completely normal again!

> > > > > I'm now taking Spironolactone prior to surgery and still feel

> > great.

> > > > >

> > > > > Do you have to have the surgery?! I have two small adenoma's

> > in my

> > > > left adrenal.

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> >

> >

> >

> >

> >

>

[Guest guest]

Need one in another organ to get MEN I think.CEGOn Feb 10, 2012, at 7:36 AM, wrote: If there are two on one side what are the odds of it being MENs Syndrome? > > > > > > > > > > I have recently been diagnosed with Conn's, and am due for > > surgery > > > > shortly. However having read about so many people still having > > lots > > > > of the same symptoms post-surgery. I'm wondering whether the > > surgery > > > > is actually worth it!?? > > > > > Having felt dreadful (Chronic fatigue, heart arythmia's, > > swelling > > > > and pain in my legs, brain fog, unable to socialise or concentrate > > > > on anything!)for many years, then taking potassium to correct my > > > > levels, i feel completely normal again! > > > > > I'm now taking Spironolactone prior to surgery and still feel > > great. > > > > > > > > > > Do you have to have the surgery?! I have two small adenoma's > > in my > > > > left adrenal. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

[Guest guest]

So if i find that things settle and i start to feel a little better with taking Spirolactone and perhaps doing the DASH diet (just ordered the book). Do you think i should sit tight for a while and gather/read more research further info., and perhaps have further investigation such as AVS?If what i DO have is adenoma's. Are they likely to increase in size whilst i'm making a more 'informed' decision?Does anyone know the name of someone who's more specialised/knowledgeable of PA in the UK?!Thank you, (Age 45) From: Clarence Grim <lowerbp2@...> hyperaldosteronism Cc: Clarence Grim <lowerbp2@...> Sent: Friday, 10 February 2012, 15:41 Subject: Re: Re: Any side effects of living with 1 adrenal gland after surgery?

Need one in another organ to get MEN I think.CEGOn Feb 10, 2012, at 7:36 AM, wrote: If there are two on one side what are the odds of it being MENs Syndrome? > > > > > > > > > > I have recently been diagnosed with Conn's, and am due for > > surgery > > > > shortly. However having read about so many people still having > > lots > > > > of the same symptoms post-surgery. I'm wondering whether the > > surgery > > > > is actually worth it!?? > > > > > Having felt dreadful (Chronic fatigue, heart arythmia's, > > swelling > > > > and pain in my legs, brain fog, unable to socialise or concentrate > > > > on anything!)for many years, then taking potassium to correct my >

> > > levels, i feel completely normal again! > > > > > I'm now taking Spironolactone prior to surgery and still feel > > great. > > > > > > > > > > Do you have to have the surgery?! I have two small adenoma's > > in my > > > > left adrenal. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

[Guest guest]

Some on here have been to Radcliffe Hospital.

> >> > > > >

> >> > > > > I have recently been diagnosed with Conn's, and am due for

> >> > surgery

> >> > > > shortly. However having read about so many people still having

> >> > lots

> >> > > > of the same symptoms post-surgery. I'm wondering whether the

> >> > surgery

> >> > > > is actually worth it!??

> >> > > > > Having felt dreadful (Chronic fatigue, heart arythmia's,

> >> > swelling

> >> > > > and pain in my legs, brain fog, unable to socialise or concentrate

> >> > > > on anything!)for many years, then taking potassium to correct my

> >> > > > levels, i feel completely normal again!

> >> > > > > I'm now taking Spironolactone prior to surgery and still feel

> >> > great.

> >> > > > >

> >> > > > > Do you have to have the surgery?! I have two small adenoma's

> >> > in my

> >> > > > left adrenal.

> >> > > > >

> >> > > >

> >> > > >

> >> > > >

> >> > > >

> >> > > >

> >> > >

> >> >

> >> >

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> >> >

> >> >

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[Guest guest]

There are several in UK I know where do u live?Not likely to grow much over 2-4 years. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Feb 10, 2012, at 10:47, Chambers <rebeccac66@...> wrote:

So if i find that things settle and i start to feel a little better with taking Spirolactone and perhaps doing the DASH diet (just ordered the book). Do you think i should sit tight for a while and gather/read more research further info., and perhaps have further investigation such as AVS?If what i DO have is adenoma's. Are they likely to increase in size whilst i'm making a more 'informed' decision?Does anyone know the name of someone who's more specialised/knowledgeable of PA in the UK?!Thank you, (Age 45) From: Clarence Grim <lowerbp2@...> hyperaldosteronism Cc: Clarence Grim <lowerbp2@...> Sent: Friday, 10 February 2012, 15:41 Subject: Re: Re: Any side effects of living with 1 adrenal gland after surgery?

Need one in another organ to get MEN I think.CEGOn Feb 10, 2012, at 7:36 AM, wrote: If there are two on one side what are the odds of it being MENs Syndrome? > > > > > > > > > > I have recently been diagnosed with Conn's, and am due for > > surgery > > > > shortly. However having read about so many people still having > > lots > > > > of the same symptoms post-surgery. I'm wondering whether the > > surgery > > > > is actually worth it!?? > > > > > Having felt dreadful (Chronic fatigue, heart arythmia's, > > swelling > > > > and pain in my legs, brain fog, unable to socialise or concentrate > > > > on anything!)for many years, then taking potassium to correct my >

> > > levels, i feel completely normal again! > > > > > I'm now taking Spironolactone prior to surgery and still feel > > great. > > > > > > > > > > Do you have to have the surgery?! I have two small adenoma's > > in my > > > > left adrenal. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

[Guest guest]

Thanks Dr Grim, that would be a great help! I live in the South East. Near Brighton (East Sussex). If they're not likely to grow much over the next few years, and i do ok with diet control and Spironolactone. I'm definitely going to hold off with the surgery until i have as much information on this condition that i can get!regards From: Clarence Grim <lowerbp2@...> To:

"hyperaldosteronism " <hyperaldosteronism > Sent: Saturday, 11 February 2012, 7:31 Subject: Re: Re: Any side effects of living with 1 adrenal gland after surgery?

There are several in UK I know where do u live?Not likely to grow much over 2-4 years. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Feb 10, 2012, at 10:47, Chambers <rebeccac66@...> wrote:

So if i find that things settle and i start to feel a little better with taking Spirolactone and perhaps doing the DASH diet (just ordered the book). Do you think i should sit tight for a while and gather/read more research further info., and perhaps have further investigation such as AVS?If what i DO have is adenoma's. Are they likely to increase in size whilst i'm making a more 'informed' decision?Does anyone know the name of someone who's more specialised/knowledgeable of PA in the UK?!Thank you, (Age 45) From: Clarence Grim <lowerbp2@...> hyperaldosteronism Cc: Clarence Grim <lowerbp2@...> Sent: Friday, 10 February 2012, 15:41 Subject: Re: Re: Any side effects of living with 1 adrenal gland after surgery?

Need one in another organ to get MEN I think.CEGOn Feb 10, 2012, at 7:36 AM, wrote: If there are two on one side what are the odds of it being MENs Syndrome? > > > > > > > > > > I have recently been diagnosed with Conn's, and am due for > > surgery > > > > shortly. However having read about so many people still having > > lots > > > > of the same symptoms post-surgery. I'm wondering whether the > > surgery > > > > is actually worth it!?? > > > > > Having felt dreadful (Chronic fatigue, heart arythmia's, > > swelling > > > > and pain in my legs, brain fog, unable to socialise or concentrate > > > > on anything!)for many years, then taking potassium to correct my >

> > > levels, i feel completely normal again! > > > > > I'm now taking Spironolactone prior to surgery and still feel > > great. > > > > > > > > > > Do you have to have the surgery?! I have two small adenoma's > > in my > > > > left adrenal. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >