Re: Re: failed AVS story - some questions, and a plan

[Guest guest]

Personally, I would opt for meds first. If that doesnt work, then repeat the AVS. To me the risk of an operation is not worth it if it can be fixed with a few cheat pills. While your body can adjust to one adrenal, what if the surgery introduces some other issue for which you end up on meds? You're already eating about as good as you can, so there really isnt alot you can change there. That is my 2 cents worth...but you have to do what you think is right for you.

============================================================================45-Male-Caucasian, 5'9"- 234lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 1800mg Calcium, 1000mg Magnesium, 100,000UI Vit D (weekly), 20mg OmeprazoleSide effects: Gynecomastia, stomach inflammationOther Diags: GERD, Hiatal Hernia, Metabolic Syndrome - PreDiabetic, Secondary Hyperparathyroidism caused by Renal calcium leak, Bone Cyct in left Femoral Head and Pelvis. Benign Lung Nodules, Fibromyalgia, Scarring on Right Kidney Lower Pole, Right Flank Pain

DASH: Started "sort of" DASHing 5/3/2011

To: hyperaldosteronism Sent: Wednesday, June 22, 2011 11:21 AMSubject: Re: failed AVS story - some questions, and a plan

I'm starting to get this whole mess sorted out and have worked out a plan with my primary care doctor. Later today I'm seeing the nephrologist to see if he's on board with this. If he's not, my primary care doc is going to get me in touch with an adrenal specialist on UCLA faculty. Here's the plan:

Repeat the AVS.

If the results show only the RIGHT adrenal is overproducing, proceed to surgery.

If bilateral, then meds as follows:

First try a much lower dose of spiro and see if I can tolerate that without the side effects I experienced at 25mg.

In addition, change to a drospirenone/ethinyl estradiol pill to regulate the menstrual problems; drospirenone can also help regulate K

If I can tolerate that, great; if not, then on to eplerenoneTo me this sounds like a pretty good plan, but before proceeding there were a couple questions I would appreciate some feedback on:

Does it even make sense to repeat the AVS? What we know is this: my LEFT adrenal has a tumor, my RIGHT is overproducing aldo. Even if the left is functioning correctly right now, is that tumor a sign that it will go bad later on? Should I just consider it bilateral as of now, and proceed directly to meds?

What baseline labs should I get before starting meds? Since I have a long history of HTN meds screwing with my blood chemistry, I've come up with this: HbA1C, fasting glucose, lipids (HCTZ raised mine considerably), liver/kidney/BUN/creatinine. Anything else? If on meds, I am going to be asked to have all of these monitored regularly.Thanks, Dr Grim, and everyone else who has offered feedback these last couple days. It's much appreciated.-msmith192845, nulliparous female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia and polymenorrhea; no HTN meds; current meds are 20MEQ K 3x/day, singulair 10mg, norethindrone .35mg to regulate polymenorrhea, cyclobenzaprine 5-10mg when needed, fexofenadine 180mg when needed; low sodium, fructose- and grain-free diet due to HEREDITARY FRUCTOSE INTOLERANCE; known drug allergies include

PCN, sulfa, tetracycline>> My nephrologist has gone over my AVS and concluded that it was not> correctly done. No surprises there - we all know that the failure rate> is pretty high. He believes that the entire time the interventional> radiologist was in my left hepatic vein, rather than adrenal vein. You> may recall that my results came back showing that the RIGHT adrenal was> overproducing aldo, while the left was normal. My tumor is on the LEFT.> > I asked him if it is possible that the LEFT could have a tumor that is> doing nothing, and the RIGHT is overproducing due to a tumor that is too> small to be seen by imaging methods, or, if the more likely conclusion> is that the disease is bilateral. He told me both are possibilities and> the only way to know is to have

AVS done correctly.> > Seems simple enough to me - the obvious thing to do is repeat the AVS.> Except the nephrologist is unwilling to have it repeated at UCLA. His> recommendation is that I go to Mayo or NIH.> > That is NOT an option for me. I have no funds for travel and as a> lifelong Californian, I do not have friends in those parts of the> country with whom I could stay. I am not wealthy, have no savings, no> credit, and no income other than my paycheck, and thanks to massive> student loans I live paycheck-to-paycheck.> > The nephrologist wants to try me on eplerenone, rather than repeat the> AVS. I do not want this to happen - I turn 46 years YOUNG on Friday and> I do not want a lifetime of meds unless it is the last resort. If there> is the possibility to not be a sick person for the rest of my life, I> think I have a right to that

chance.> > Please keep in mind:> > * I can't take spiro due to severe gynecomastia and nonstop> polymenorrhea> * I can't DASH due to hereditary fructose intolerance> > I believe the only way I can accept a future of meds only is with> conclusive proof that my disease is bilateral.> > Bottom line: I need to have UCLA repeat the AVS, and I need my insurance> to cover it.> > I'm not sure how to go about this, since the physician who ordered it in> the first place seems to have a personal bias against having it done> there again. I'm meeting with my primary care doctor later today and> hope to get him on my side to persuade the nephrologist to order the> test again.> > If I can't persuade him to do that, I have no idea what to do next.> Allegedly the specialists I have seen are the top experts at UCLA

with> regard to this, and at the moment I feel like they have given up on me.> > > -msmith1928> 45, nulliparous female, 5'3", 120 lbs, 1cm left adrenal nodule,> supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking> supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds> are 20MEQ K 3x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine> 5-10mg when needed, fexofenadine 180mg when needed; low sodium,> fructose- and grain-free diet due to HEREDITARY FRUCTOSE INTOLERANCE;> known drug allergies include PCN, sulfa, tetracycline>

[Guest guest]

To be honest, your dietary restrictions would be far worse to me than any pill regimen. I cant even stick with a proper execution of the DASH diet. Taking the pills is the easy part. Just look at them like suppliments and tell yourself, welcome to middle age. The best part is that you can take the little pills and head off the life ending damage that PA brings to the table. I am very thankful for researchers like Dr. Grim who have brought us this far.

Most of my grandmothers side all died fairly young (60's & 70's) from heart conditions and strokes. I suspect alot of them had PA, but had no idea. Surgery is not without risk. I have a friend who died at the age of 30 from stupid acid reflux surgery. Dumb surgeon horse doctor punched a whole in his stomach and the acid ruined his lungs. To arrogant to do anything about it until it was too late. He had a 6mo old son. Ever since that time, noone will operate on me unless it is the last option. It is one of the reasons I wont get surgery on the gyno, even though I had my 3rd mamogram yesterday and was told that I have fully developed glands now. Yup, girl boobs. As long as i am "fat" it dont look any different than any other fat guy with larger chest. But if i lost weight, I would probably get laughed at. Total humiliation. What choice do i have? Surgery might work, but for how long. The

doc told me they could keep growing back as long as what is causing it is still there. Well, I have to take spiro for life now. I dont have a tumor, so i cant have surgery even if i wanted to. I am just glad I am not 25 dealing with it, and my wife isnt freaking out about it. It is annoying having to wear layers and stuff. But, my brother-in-law is facing Multiple Myloma cancer. A basic death sentance at the age of 51. When I put it all into perspective, taking a few pills and having larger/sore boobs is a small price to pay to stay alive. I could take eplerenone, but my doc is not convinced that we know enough about the long term side effects to plan on taking it for life. Spiro has been around a long time and we know what that does. Anyway, a bit off topic, but a little more detail around my line of thinking.

============================================================================45-Male-Caucasian, 5'9"- 234lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 1800mg Calcium, 1000mg Magnesium, 100,000UI Vit D (weekly), 20mg OmeprazoleSide effects: Gynecomastia, stomach inflammationOther Diags: GERD, Hiatal Hernia, Metabolic Syndrome - PreDiabetic, Secondary Hyperparathyroidism caused by Renal calcium leak, Bone Cyct in left Femoral Head and Pelvis. Benign Lung Nodules, Fibromyalgia, Scarring on Right Kidney Lower Pole, Right Flank Pain

DASH: Started "sort of" DASHing 5/3/2011

To: hyperaldosteronism Sent: Wednesday, June 22, 2011 11:51 AMSubject: Re: failed AVS story - some questions, and a plan

Thanks for the feedback, that's actually what I'm thinking too: just trythe darned meds and hope for the best. I really, really would not feelcomfortable choosing to remove the adrenal that doesn't have a tumorunless they were 100% certain it would work - and we all know that's notpossible.I just hate the idea of being on pills the rest of my life. Especiallywhen the side effects are more painful than the disease itself.- -msmith192845, nulliparous female, 5'3", 120 lbs, 1cm left adrenal nodule,supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not takingsupplements); 25mg spiro caused gynecomastia and polymenorrhea; no HTNmeds; current meds are 20MEQ K 3x/day, singulair 10mg, norethindrone.35mg to regulate polymenorrhea, cyclobenzaprine 5-10mg when needed,fexofenadine 180mg when needed; low sodium, fructose- and grain-freediet due to HEREDITARY FRUCTOSE INTOLERANCE; known drug

allergiesinclude PCN, sulfa, tetracycline> >>> >> My nephrologist has gone over my AVS and concluded that it was not> >> correctly done. No surprises there - we all know that the failurerate> >> is pretty high. He

believes that the entire time the interventional> >> radiologist was in my left hepatic vein, rather than adrenal vein.You> >> may recall that my results came back showing that the RIGHT adrenalwas> >> overproducing aldo, while the left was normal. My tumor is on theLEFT.> >>> >> I asked him if it is possible that the LEFT could have a tumor thatis> >> doing nothing, and the RIGHT is overproducing due to a tumor thatis too> >> small to be seen by imaging methods, or, if the more likelyconclusion> >> is that the disease is bilateral. He told me both are possibilitiesand> >> the only way to know is to have AVS done correctly.> >>> >> Seems simple enough to me - the obvious thing to do is repeat theAVS.> >> Except the nephrologist is unwilling to have it repeated at

UCLA.His> >> recommendation is that I go to Mayo or NIH.> >>> >> That is NOT an option for me. I have no funds for travel and as a> >> lifelong Californian, I do not have friends in those parts of the> >> country with whom I could stay. I am not wealthy, have no savings,no> >> credit, and no income other than my paycheck, and thanks to massive> >> student loans I live paycheck-to-paycheck.> >>> >> The nephrologist wants to try me on eplerenone, rather than repeatthe> >> AVS. I do not want this to happen - I turn 46 years YOUNG on Fridayand> >> I do not want a lifetime of meds unless it is the last resort. Ifthere> >> is the possibility to not be a sick person for the rest of my life,I> >> think I have a right to that chance.> >>> >>

Please keep in mind:> >>> >> * I can't take spiro due to severe gynecomastia and nonstop> >> polymenorrhea> >> * I can't DASH due to hereditary fructose intolerance> >>> >> I believe the only way I can accept a future of meds only is with> >> conclusive proof that my disease is bilateral.> >>> >> Bottom line: I need to have UCLA repeat the AVS, and I need myinsurance> >> to cover it.> >>> >> I'm not sure how to go about this, since the physician who orderedit in> >> the first place seems to have a personal bias against having itdone> >> there again. I'm meeting with my primary care doctor later todayand> >> hope to get him on my side to persuade the nephrologist to orderthe> >> test again.> >>> >> If I

can't persuade him to do that, I have no idea what to do next.> >> Allegedly the specialists I have seen are the top experts at UCLAwith> >> regard to this, and at the moment I feel like they have given up onme.> >>> >>> >> -msmith1928> >> 45, nulliparous female, 5'3", 120 lbs, 1cm left adrenal nodule,> >> supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking> >> supplements); 25mg spiro caused gynecomastia; no HTN meds; currentmeds> >> are 20MEQ K 3x/day, singulair 10mg, norethindrone .35mg,cyclobenzaprine> >> 5-10mg when needed, fexofenadine 180mg when needed; low sodium,> >> fructose- and grain-free diet due to HEREDITARY FRUCTOSEINTOLERANCE;> >> known drug allergies include PCN, sulfa, tetracycline> >>> >> >> >>

>> DASH: Started "sort of" DASHing 5/3/2011>

[Guest guest]

taking pills has risks also. More people die from adverse reactions to pills

than in surgery. Those stats that measure those who die in surgery also look at

those who were dying but couldn't be saved by surgery so the pill cause is

likely much higher. I myself would likely opt for no surgery as spiro and K and

DASH work fine, but neither choice is risk free except maybe DASH and excersise.

Just sayin

>To be honest, your dietary restrictions would be far worse to me than any pill

regimen. I cant even stick with a proper execution of the DASH diet. Taking the

pills is the easy part. Just look at them like suppliments and tell yourself,

welcome to middle age. The best part is that you can take the little pills

and head off the life ending damage that PA brings to the table. I am very

thankful for researchers like Dr. Grim who have brought us this far.

>Most of my grandmothers side all died fairly young (60's & 70's) from heart

conditions and strokes. I suspect alot of them had PA, but had no idea. Surgery

is not without risk. I have a friend who died at the age of 30 from stupid acid

reflux surgery. Dumb surgeon horse doctor punched a whole in his stomach and the

acid ruined his lungs. To arrogant to do anything about it until it was too

late. He had a 6mo old son. Ever since that time, noone will operate on me

unless it is the last option. It is one of the reasons I wont get surgery on the

gyno, even though I had my 3rd mamogram yesterday and was told that I have fully

developed glands now. Yup, girl boobs. As long as i am " fat " it dont look any

different than any other fat guy with larger chest. But if i lost weight, I

would probably get laughed at. Total humiliation. What choice do i have? Surgery

might work, but for how long. The doc told me they could keep growing back as

long as what is

> causing it is still there. Well, I have to take spiro for life now. I dont

have a tumor, so i cant have surgery even if i wanted to. I am just glad I am

not 25 dealing with it, and my wife isnt freaking out about it. It is annoying

having to wear layers and stuff. But, my brother-in-law is facing Multiple

Myloma cancer. A basic death sentance at the age of 51. When I put it all into

perspective, taking a few pills and having larger/sore boobs is a small price to

pay to stay alive. I could take eplerenone, but my doc is not convinced that we

know enough about the long term side effects to plan on taking it for life.

Spiro has been around a long time and we know what that does. Anyway, a bit off

topic, but a little more detail around my line of thinking.

> 

>============================================================================

>45-Male-Caucasian, 5'9 " - 234lbs, PA Diagnosed 2007 Suspected Hyperplasia-No

tumors on CT - No AVS.

>Meds: 100mg Spiro, 1800mg Calcium, 1000mg Magnesium, 100,000UI Vit D (weekly),

20mg Omeprazole

>Side effects: Gynecomastia, stomach inflammation

>Other Diags: GERD, Hiatal Hernia, Metabolic Syndrome - PreDiabetic, Secondary

Hyperparathyroidism caused by Renal calcium leak, Bone Cyct in left Femoral Head

and Pelvis. Benign Lung Nodules, Fibromyalgia, Scarring on Right Kidney Lower

Pole, Right Flank Pain

>

>

>>To: hyperaldosteronism

>>Sent: Wednesday, June 22, 2011 11:51 AM

>>Subject: Re: failed AVS story - some questions, and a

plan

>>

>>

>> 

>>Thanks for the feedback, that's actually what I'm thinking too: just try

>>the darned meds and hope for the best. I really, really would not feel

>>comfortable choosing to remove the adrenal that doesn't have a tumor

>>unless they were 100% certain it would work - and we all know that's not

>>possible.

>>

>>I just hate the idea of being on pills the rest of my life. Especially

>>when the side effects are more painful than the disease itself.

>>

>>- -msmith1928

>>45, nulliparous female, 5'3 " , 120 lbs, 1cm left adrenal nodule,

>>supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking

>>supplements); 25mg spiro caused gynecomastia and polymenorrhea; no HTN

>>meds; current meds are 20MEQ K 3x/day, singulair 10mg, norethindrone

>>.35mg to regulate polymenorrhea, cyclobenzaprine 5-10mg when needed,

>>fexofenadine 180mg when needed; low sodium, fructose- and grain-free

>>diet due to HEREDITARY FRUCTOSE INTOLERANCE; known drug allergies

>>include PCN, sulfa, tetracycline

>>

>>

>>> >>

>>> >> My nephrologist has gone over my AVS and concluded that it was not

>>> >> correctly done. No surprises there - we all know that the failure

>>rate

>>> >> is pretty high. He believes that the entire time the interventional

>>> >> radiologist was in my left hepatic vein, rather than adrenal vein.

>>You

>>> >> may recall that my results came back showing that the RIGHT adrenal

>>was

>>> >> overproducing aldo, while the left was normal. My tumor is on the

>>LEFT.

>>> >>

>>> >> I asked him if it is possible that the LEFT could have a tumor that

>>is

>>> >> doing nothing, and the RIGHT is overproducing due to a tumor that

>>is too

>>> >> small to be seen by imaging methods, or, if the more likely

>>conclusion

>>> >> is that the disease is bilateral. He told me both are possibilities

>>and

>>> >> the only way to know is to have AVS done correctly.

>>> >>

>>> >> Seems simple enough to me - the obvious thing to do is repeat the

>>AVS.

>>> >> Except the nephrologist is unwilling to have it repeated at UCLA.

>>His

>>> >> recommendation is that I go to Mayo or NIH.

>>> >>

>>> >> That is NOT an option for me. I have no funds for travel and as a

>>> >> lifelong Californian, I do not have friends in those parts of the

>>> >> country with whom I could stay. I am not wealthy, have no savings,

>>no

>>> >> credit, and no income other than my paycheck, and thanks to massive

>>> >> student loans I live paycheck-to-paycheck.

>>> >>

>>> >> The nephrologist wants to try me on eplerenone, rather than repeat

>>the

>>> >> AVS. I do not want this to happen - I turn 46 years YOUNG on Friday

>>and

>>> >> I do not want a lifetime of meds unless it is the last resort. If

>>there

>>> >> is the possibility to not be a sick person for the rest of my life,

>>I

>>> >> think I have a right to that chance.

>>> >>

>>> >> Please keep in mind:

>>> >>

>>> >> * I can't take spiro due to severe gynecomastia and nonstop

>>> >> polymenorrhea

>>> >> * I can't DASH due to hereditary fructose intolerance

>>> >>

>>> >> I believe the only way I can accept a future of meds only is with

>>> >> conclusive proof that my disease is bilateral.

>>> >>

>>> >> Bottom line: I need to have UCLA repeat the AVS, and I need my

>>insurance

>>> >> to cover it.

>>> >>

>>> >> I'm not sure how to go about this, since the physician who ordered

>>it in

>>> >> the first place seems to have a personal bias against having it

>>done

>>> >> there again. I'm meeting with my primary care doctor later today

>>and

>>> >> hope to get him on my side to persuade the nephrologist to order

>>the

>>> >> test again.

>>> >>

>>> >> If I can't persuade him to do that, I have no idea what to do next.

>>> >> Allegedly the specialists I have seen are the top experts at UCLA

>>with

>>> >> regard to this, and at the moment I feel like they have given up on

>>me.

>>> >>

>>> >>

>>> >> -msmith1928

>>> >> 45, nulliparous female, 5'3 " , 120 lbs, 1cm left adrenal nodule,

>>> >> supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking

>>> >> supplements); 25mg spiro caused gynecomastia; no HTN meds; current

>>meds

>>> >> are 20MEQ K 3x/day, singulair 10mg, norethindrone .35mg,

>>cyclobenzaprine

>>> >> 5-10mg when needed, fexofenadine 180mg when needed; low sodium,

>>> >> fructose- and grain-free diet due to HEREDITARY FRUCTOSE

>>INTOLERANCE;

>>> >> known drug allergies include PCN, sulfa, tetracycline

>>> >>

>>> >

>>> >

>>> >

>>> >

>>> DASH: Started " sort of " DASHing 5/3/2011

>>>

>>

>>

>>

>>

>>

>DASH: Started " sort of " DASHing 5/3/2011

[Guest guest]

Ask them to do renin and Aldo before u leave Hosp or in next 2 weeks. Good way to predict response. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Big, big hugs from here. I've not caught up with all the posts so maybe somebody has already answered your Spiro question elsewhere. For me it took a good couple of weeks before my BP came down properly (I even up the dosed because I thought it wasn't high enough and then it came down too much and I got nauseous). So you can't tell in the first few days.

I've now had my adrenalectomy and I have to say that was no big deal either but still don't know whether it was successful or not (it was yesterday so I'm typing from the hospital ;-) ). BP overnight was great but I was lying still in a bed and Spiro was still in my system - will take a couple of weeks to tell for sure.

But I'm so sorry the AVS didn't give you a clear answer and I think I would be tempted to go again if I were in your position but no idea how the crazy US health system works to go about that :-(

And meantime I hope you don't get the nasty side effects on the lower does of Spiro.

H

> > > >>> >>

> > > >>> >> My nephrologist has gone over my AVS and concluded that it was not

> > > >>> >> correctly done. No surprises there - we all know that the failure

> > > >>rate

> > > >>> >> is pretty high. He believes that the entire time the interventional

> > > >>> >> radiologist was in my left hepatic vein, rather than adrenal vein.

> > > >>You

> > > >>> >> may recall that my results came back showing that the RIGHT adrenal

> > > >>was

> > > >>> >> overproducing aldo, while the left was normal. My tumor is on the

> > > >>LEFT.

> > > >>> >>

> > > >>> >> I asked him if it is possible that the LEFT could have a tumor that

> > > >>is

> > > >>> >> doing nothing, and the RIGHT is overproducing due to a tumor that

> > > >>is too

> > > >>> >> small to be seen by imaging methods, or, if the more likely

> > > >>conclusion

> > > >>> >> is that the disease is bilateral. He told me both are possibilities

> > > >>and

> > > >>> >> the only way to know is to have AVS done correctly.

> > > >>> >>

> > > >>> >> Seems simple enough to me - the obvious thing to do is repeat the

> > > >>AVS.

> > > >>> >> Except the nephrologist is unwilling to have it repeated at UCLA.

> > > >>His

> > > >>> >> recommendation is that I go to Mayo or NIH.

> > > >>> >>

> > > >>> >> That is NOT an option for me. I have no funds for travel and as a

> > > >>> >> lifelong Californian, I do not have friends in those parts of the

> > > >>> >> country with whom I could stay. I am not wealthy, have no savings,

> > > >>no

> > > >>> >> credit, and no income other than my paycheck, and thanks to massive

> > > >>> >> student loans I live paycheck-to-paycheck.

> > > >>> >>

> > > >>> >> The nephrologist wants to try me on eplerenone, rather than repeat

> > > >>the

> > > >>> >> AVS. I do not want this to happen - I turn 46 years YOUNG on Friday

> > > >>and

> > > >>> >> I do not want a lifetime of meds unless it is the last resort. If

> > > >>there

> > > >>> >> is the possibility to not be a sick person for the rest of my life,

> > > >>I

> > > >>> >> think I have a right to that chance.

> > > >>> >>

> > > >>> >> Please keep in mind:

> > > >>> >>

> > > >>> >> * I can't take spiro due to severe gynecomastia and nonstop

> > > >>> >> polymenorrhea

> > > >>> >> * I can't DASH due to hereditary fructose intolerance

> > > >>> >>

> > > >>> >> I believe the only way I can accept a future of meds only is with

> > > >>> >> conclusive proof that my disease is bilateral.

> > > >>> >>

> > > >>> >> Bottom line: I need to have UCLA repeat the AVS, and I need my

> > > >>insurance

> > > >>> >> to cover it.

> > > >>> >>

> > > >>> >> I'm not sure how to go about this, since the physician who ordered

> > > >>it in

> > > >>> >> the first place seems to have a personal bias against having it

> > > >>done

> > > >>> >> there again. I'm meeting with my primary care doctor later today

> > > >>and

> > > >>> >> hope to get him on my side to persuade the nephrologist to order

> > > >>the

> > > >>> >> test again.

> > > >>> >>

> > > >>> >> If I can't persuade him to do that, I have no idea what to do next.

> > > >>> >> Allegedly the specialists I have seen are the top experts at UCLA

> > > >>with

> > > >>> >> regard to this, and at the moment I feel like they have given up on

> > > >>me.

> > > >>> >>

> > > >>> >>

> > > >>> >> -msmith1928

> > > >>> >> 45, nulliparous female, 5'3", 120 lbs, 1cm left adrenal nodule,

> > > >>> >> supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking

> > > >>> >> supplements); 25mg spiro caused gynecomastia; no HTN meds; current

> > > >>meds

> > > >>> >> are 20MEQ K 3x/day, singulair 10mg, norethindrone .35mg,

> > > >>cyclobenzaprine

> > > >>> >> 5-10mg when needed, fexofenadine 180mg when needed; low sodium,

> > > >>> >> fructose- and grain-free diet due to HEREDITARY FRUCTOSE

> > > >>INTOLERANCE;

> > > >>> >> known drug allergies include PCN, sulfa, tetracycline

> > > >>> >>

> > > >>> >

> > > >>> >

> > > >>> >

> > > >>> >

> > > >>> DASH: Started "sort of" DASHing 5/3/2011

> > > >>

> >

>

[Guest guest]

if side effects are a problem then that is good reason to consider surgery.Again after low Na Hi K documented by urine testing.CE Grim MDThanks for the feedback, that's actually what I'm thinking too: just trythe darned meds and hope for the best. I really, really would not feelcomfortable choosing to remove the adrenal that doesn't have a tumorunless they were 100% certain it would work - and we all know that's notpossible.I just hate the idea of being on pills the rest of my life. Especiallywhen the side effects are more painful than the disease itself.- -msmith192845, nulliparous female, 5'3", 120 lbs, 1cm left adrenal nodule,supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not takingsupplements); 25mg spiro caused gynecomastia and polymenorrhea; no HTNmeds; current meds are 20MEQ K 3x/day, singulair 10mg, norethindrone.35mg to regulate polymenorrhea, cyclobenzaprine 5-10mg when needed,fexofenadine 180mg when needed; low sodium, fructose- and grain-freediet due to HEREDITARY FRUCTOSE INTOLERANCE; known drug allergiesinclude PCN, sulfa, tetracycline> >>> >> My nephrologist has gone over my AVS and concluded that it was not> >> correctly done. No surprises there - we all know that the failurerate> >> is pretty high. He believes that the entire time the interventional> >> radiologist was in my left hepatic vein, rather than adrenal vein.You> >> may recall that my results came back showing that the RIGHT adrenalwas> >> overproducing aldo, while the left was normal. My tumor is on theLEFT.> >>> >> I asked him if it is possible that the LEFT could have a tumor thatis> >> doing nothing, and the RIGHT is overproducing due to a tumor thatis too> >> small to be seen by imaging methods, or, if the more likelyconclusion> >> is that the disease is bilateral. He told me both are possibilitiesand> >> the only way to know is to have AVS done correctly.> >>> >> Seems simple enough to me - the obvious thing to do is repeat theAVS.> >> Except the nephrologist is unwilling to have it repeated at UCLA.His> >> recommendation is that I go to Mayo or NIH.> >>> >> That is NOT an option for me. I have no funds for travel and as a> >> lifelong Californian, I do not have friends in those parts of the> >> country with whom I could stay. I am not wealthy, have no savings,no> >> credit, and no income other than my paycheck, and thanks to massive> >> student loans I live paycheck-to-paycheck.> >>> >> The nephrologist wants to try me on eplerenone, rather than repeatthe> >> AVS. I do not want this to happen - I turn 46 years YOUNG on Fridayand> >> I do not want a lifetime of meds unless it is the last resort. Ifthere> >> is the possibility to not be a sick person for the rest of my life,I> >> think I have a right to that chance.> >>> >> Please keep in mind:> >>> >> * I can't take spiro due to severe gynecomastia and nonstop> >> polymenorrhea> >> * I can't DASH due to hereditary fructose intolerance> >>> >> I believe the only way I can accept a future of meds only is with> >> conclusive proof that my disease is bilateral.> >>> >> Bottom line: I need to have UCLA repeat the AVS, and I need myinsurance> >> to cover it.> >>> >> I'm not sure how to go about this, since the physician who orderedit in> >> the first place seems to have a personal bias against having itdone> >> there again. I'm meeting with my primary care doctor later todayand> >> hope to get him on my side to persuade the nephrologist to orderthe> >> test again.> >>> >> If I can't persuade him to do that, I have no idea what to do next.> >> Allegedly the specialists I have seen are the top experts at UCLAwith> >> regard to this, and at the moment I feel like they have given up onme.> >>> >>> >> -msmith1928> >> 45, nulliparous female, 5'3", 120 lbs, 1cm left adrenal nodule,> >> supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking> >> supplements); 25mg spiro caused gynecomastia; no HTN meds; currentmeds> >> are 20MEQ K 3x/day, singulair 10mg, norethindrone .35mg,cyclobenzaprine> >> 5-10mg when needed, fexofenadine 180mg when needed; low sodium,> >> fructose- and grain-free diet due to HEREDITARY FRUCTOSEINTOLERANCE;> >> known drug allergies include PCN, sulfa, tetracycline> >>> >> >> >> >> DASH: Started "sort of" DASHing 5/3/2011>

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Have you tired Inspra yet? Should allow regression of gyncomastia if due to spiro.Keep in mind that life is a uniformly fatal, sexually transmitted disease. To be honest, your dietary restrictions would be far worse to me than any pill regimen. I cant even stick with a proper execution of the DASH diet. Taking the pills is the easy part. Just look at them like suppliments and tell yourself, welcome to middle age. The best part is that you can take the little pills and head off the life ending damage that PA brings to the table. I am very thankful for researchers like Dr. Grim who have brought us this far.Most of my grandmothers side all died fairly young (60's & 70's) from heart conditions and strokes. I suspect alot of them had PA, but had no idea. Surgery is not without risk. I have a friend who died at the age of 30 from stupid acid reflux surgery. Dumb surgeon horse doctor punched a whole in his stomach and the acid ruined his lungs. To arrogant to do anything about it until it was too late. He had a 6mo old son. Ever since that time, noone will operate on me unless it is the last option. It is one of the reasons I wont get surgery on the gyno, even though I had my 3rd mamogram yesterday and was told that I have fully developed glands now. Yup, girl boobs. As long as i am "fat" it dont look any different than any other fat guy with larger chest. But if i lost weight, I would probably get laughed at. Total humiliation. What choice do i have? Surgery might work, but for how long. The doc told me they could keep growing back as long as what is causing it is still there. Well, I have to take spiro for life now. I dont have a tumor, so i cant have surgery even if i wanted to. I am just glad I am not 25 dealing with it, and my wife isnt freaking out about it. It is annoying having to wear layers and stuff. But, my brother-in-law is facing Multiple Myloma cancer. A basic death sentance at the age of 51. When I put it all into perspective, taking a few pills and having larger/sore boobs is a small price to pay to stay alive. I could take eplerenone, but my doc is not convinced that we know enough about the long term side effects to plan on taking it for life. Spiro has been around a long time and we know what that does. Anyway, a bit off topic, but a little more detail around my line of thinking. ============================================================================45-Male-Caucasian, 5'9"- 234lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 1800mg Calcium, 1000mg Magnesium, 100,000UI Vit D (weekly), 20mg OmeprazoleSide effects: Gynecomastia, stomach inflammationOther Diags: GERD, Hiatal Hernia, Metabolic Syndrome - PreDiabetic, Secondary Hyperparathyroidism caused by Renal calcium leak, Bone Cyct in left Femoral Head and Pelvis. Benign Lung Nodules, Fibromyalgia, Scarring on Right Kidney Lower Pole, Right Flank PainDASH: Started "sort of" DASHing 5/3/2011To: hyperaldosteronism Sent: Wednesday, June 22, 2011 11:51 AMSubject: Re: failed AVS story - some questions, and a plan Thanks for the feedback, that's actually what I'm thinking too: just trythe darned meds and hope for the best. I really, really would not feelcomfortable choosing to remove the adrenal that doesn't have a tumorunless they were 100% certain it would work - and we all know that's notpossible.I just hate the idea of being on pills the rest of my life. Especiallywhen the side effects are more painful than the disease itself.- -msmith192845, nulliparous female, 5'3", 120 lbs, 1cm left adrenal nodule,supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not takingsupplements); 25mg spiro caused gynecomastia and polymenorrhea; no HTNmeds; current meds are 20MEQ K 3x/day, singulair 10mg, norethindrone.35mg to regulate polymenorrhea, cyclobenzaprine 5-10mg when needed,fexofenadine 180mg when needed; low sodium, fructose- and grain-freediet due to HEREDITARY FRUCTOSE INTOLERANCE; known drug allergiesinclude PCN, sulfa, tetracycline> >>> >> My nephrologist has gone over my AVS and concluded that it was not> >> correctly done. No surprises there - we all know that the failurerate> >> is pretty high. He believes that the entire time the interventional> >> radiologist was in my left hepatic vein, rather than adrenal vein.You> >> may recall that my results came back showing that the RIGHT adrenalwas> >> overproducing aldo, while the left was normal. My tumor is on theLEFT.> >>> >> I asked him if it is possible that the LEFT could have a tumor thatis> >> doing nothing, and the RIGHT is overproducing due to a tumor thatis too> >> small to be seen by imaging methods, or, if the more likelyconclusion> >> is that the disease is bilateral. He told me both are possibilitiesand> >> the only way to know is to have AVS done correctly.> >>> >> Seems simple enough to me - the obvious thing to do is repeat theAVS.> >> Except the nephrologist is unwilling to have it repeated at UCLA.His> >> recommendation is that I go to Mayo or NIH.> >>> >> That is NOT an option for me. I have no funds for travel and as a> >> lifelong Californian, I do not have friends in those parts of the> >> country with whom I could stay. I am not wealthy, have no savings,no> >> credit, and no income other than my paycheck, and thanks to massive> >> student loans I live paycheck-to-paycheck.> >>> >> The nephrologist wants to try me on eplerenone, rather than repeatthe> >> AVS. I do not want this to happen - I turn 46 years YOUNG on Fridayand> >> I do not want a lifetime of meds unless it is the last resort. Ifthere> >> is the possibility to not be a sick person for the rest of my life,I> >> think I have a right to that chance.> >>> >> Please keep in mind:> >>> >> * I can't take spiro due to severe gynecomastia and nonstop> >> polymenorrhea> >> * I can't DASH due to hereditary fructose intolerance> >>> >> I believe the only way I can accept a future of meds only is with> >> conclusive proof that my disease is bilateral.> >>> >> Bottom line: I need to have UCLA repeat the AVS, and I need myinsurance> >> to cover it.> >>> >> I'm not sure how to go about this, since the physician who orderedit in> >> the first place seems to have a personal bias against having itdone> >> there again. I'm meeting with my primary care doctor later todayand> >> hope to get him on my side to persuade the nephrologist to orderthe> >> test again.> >>> >> If I can't persuade him to do that, I have no idea what to do next.> >> Allegedly the specialists I have seen are the top experts at UCLAwith> >> regard to this, and at the moment I feel like they have given up onme.> >>> >>> >> -msmith1928> >> 45, nulliparous female, 5'3", 120 lbs, 1cm left adrenal nodule,> >> supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking> >> supplements); 25mg spiro caused gynecomastia; no HTN meds; currentmeds> >> are 20MEQ K 3x/day, singulair 10mg, norethindrone .35mg,cyclobenzaprine> >> 5-10mg when needed, fexofenadine 180mg when needed; low sodium,> >> fructose- and grain-free diet due to HEREDITARY FRUCTOSEINTOLERANCE;> >> known drug allergies include PCN, sulfa, tetracycline> >>> >> >> >> >> DASH: Started "sort of" DASHing 5/3/2011>