Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 In PA calcium is one we don't absorb, do they think that is why or did they think it was something else? If it's the PA and the spiro fixed it .....awesome!! Subject: Switching to INSPRATo: "PA Yahoo Group" <hyperaldosteronism >Date: Friday, September 2, 2011, 10:55 AM Met with my Dr Today. He was very happy with how my lower salt diet has cured my renal calcium leak. My office BP was 110/78. We didnt do urine this time, but will after I have been on Inspra. Decided to try INSPRA and hopefully end the gyno. I measured up and it appears I would take a 46B bra if I wore one...for goodness sake...time to out an end to that! I pray it will reverse somewhat so I can stop thinking about it...and hopefully not get any worse going forward. He wasnt sure on the dosing as the directions for him were (up to 50mg) a day for dosing. We will try that and I will be more vigilant about dash. I told him Dr Grim suggested double what Spiro would be, but he wasnt comforable starting out with 4 times the recommended dosing by the manufacturer. I'll just watch the BP and treat the PA symptoms by varying my K intake for the first month. Although, I suspect spiro might still have an impact for a while too. Fortunately I am pretty sensative to what is going on, so I can tell when the K is getting low before it gets dangerously low. It is amazing how much we all have learned about this stuff from each other. ============================================================================45-Male-Caucasian, 5'9"- 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 No, Dr Grim told me that it was the salt causing the Calcium loss, not some genetic flaw or other nonsense. So, in May I stopped the HCTZ, lowered my sodium intake dramitcally. By cutting back on the salt, PTH went back to normal range (curing my secondary hyperparathyroid problem), blood calcium went up, and urine calcium returned to normal. Dash or not...lowing the salt intake was the key to plugging the renal leak without using the Thiazide diruretic. That was the only reason I was taking HCTZ - the side effect of it making me retain calcium...without having a restricted sodium intake. Problem was, it make me lose Potassium too. ============================================================================45-Male-Caucasian, 5'9"- 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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: Friday, September 2, 2011 11:06 AMSubject: Re: Switching to INSPRA In PA calcium is one we don't absorb, do they think that is why or did they think it was something else? If it's the PA and the spiro fixed it .....awesome!! Subject: Switching to INSPRATo: "PA Yahoo Group" <hyperaldosteronism >Date: Friday, September 2, 2011, 10:55 AM Met with my Dr Today. He was very happy with how my lower salt diet has cured my renal calcium leak. My office BP was 110/78. We didnt do urine this time, but will after I have been on Inspra. Decided to try INSPRA and hopefully end the gyno. I measured up and it appears I would take a 46B bra if I wore one...for goodness sake...time to out an end to that! I pray it will reverse somewhat so I can stop thinking about it...and hopefully not get any worse going forward. He wasnt sure on the dosing as the directions for him were (up to 50mg) a day for dosing. We will try that and I will be more vigilant about dash. I told him Dr Grim suggested double what Spiro would be, but he wasnt comforable starting out with 4 times the recommended dosing by the manufacturer. I'll just watch the BP and treat the PA symptoms by varying my K intake for the first month. Although, I suspect spiro might still have an impact for a while too. Fortunately I am pretty sensative to what is going on, so I can tell when the K is getting low before it gets dangerously low. It is amazing how much we all have learned about this stuff from each other. ============================================================================45-Male-Caucasian, 5'9"- 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 ,Your experience parallels mine. Both my primary care doc and Nephrologist refused to exceed the label max dose of Eplerenone. You can go online and read the Pfizer package insert. They say nothing about hyperaldo, only hypertension. This even complicated getting my insurance to cover the drug. The doctor had submitted paperwork stating it was to treat Hyperaldosteronism, which it is not labeled for. These days I think docs are cowed by possibility of lawsuits. If just about anything happens to your health after taking a higher than the labeled dose of anything, they could be found to be at fault. I am hoping the new endocrinologist I see next week will be more willing to work with me. BTW the gynecomastia stopped almost immediately. Not the size, it has been over 8 months, but the pain and swelling. Don Krebs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 I hope my insurance will cover it. I hope the size goes away over the same time period. But, even if it doesnt, it wont hurt so much to wear tight tshirts to smash things up more. That is what i do now...compression tshirt if I am wearing other clothing that would otherwise show off my budding teenage boobs. I laugh about it mostly, but in certain situations, it is embarrassing. I dont run around without a shirt mowing lawn anyore. But, i really didnt do that all that much since i turned into a marshmellow anyway. But, the pain and tenderness being gone will be a plus. ============================================================================45-Male-Caucasian, 5'9"- 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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: Friday, September 2, 2011 12:58 PMSubject: Re: Switching to INSPRA ,Your experience parallels mine. Both my primary care doc and Nephrologist refused to exceed the label max dose of Eplerenone. You can go online and read the Pfizer package insert. They say nothing about hyperaldo, only hypertension. This even complicated getting my insurance to cover the drug. The doctor had submitted paperwork stating it was to treat Hyperaldosteronism, which it is not labeled for. These days I think docs are cowed by possibility of lawsuits. If just about anything happens to your health after taking a higher than the labeled dose of anything, they could be found to be at fault. I am hoping the new endocrinologist I see next week will be more willing to work with me. BTW the gynecomastia stopped almost immediately. Not the size, it has been over 8 months, but the pain and swelling. Don Krebs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 , be sure that your doc puts HTN, and not hyperaldo, as your diagnosis. My doc has said that keeping the official diagnosis as HTN makes getting things covered by insurance a whole lot easier. > > I hope my insurance will cover it. I hope the size goes away over the same time period. But, even if it doesnt, it wont hurt so much to wear tight tshirts to smash things up more. That is what i do now...compression tshirt if I am wearing other clothing that would otherwise show off my budding teenage boobs. I laugh about it mostly, but in certain situations, it is embarrassing. I dont run around without a shirt mowing lawn anyore. But, i really didnt do that all that much since i turned into a marshmellow anyway. But, the pain and tenderness being gone will be a plus. > > > ============================================================================ > 45-Male-Caucasian, 5'9 " - 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS. > Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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 PainDASH: Started " sort of " DASHing 5/3/2011 > > > >To: hyperaldosteronism > >Sent: Friday, September 2, 2011 12:58 PM > >Subject: Re: Switching to INSPRA > > > > > >  > > > >, > >Your experience parallels mine. Both my primary care doc and Nephrologist refused to exceed the label max dose of Eplerenone. You can go online and read the Pfizer package insert. They say nothing about hyperaldo, only hypertension. This even complicated getting my insurance to cover the drug. The doctor had submitted paperwork stating it was to treat Hyperaldosteronism, which it is not labeled for. These days I think docs are cowed by possibility of lawsuits. If just about anything happens to your health after taking a higher than the labeled dose of anything, they could be found to be at fault. I am hoping the new endocrinologist I see next week will be more willing to work with me. > >BTW the gynecomastia stopped almost immediately. Not the size, it has been over 8 months, but the pain and swelling. > >Don Krebs > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Yup. I dont think he has PA on my chart at all. I see the condition codes and they are always HTN. I think i saw something that said the pills are like $3.00 each for 50mg and spiro is like $.50. I will pay for that damn things myslef if they work. I will not let insurance determine my treatment. I will ask when I pick them up , what the cost was without the perscription and report back.. ============================================================================45-Male-Caucasian, 5'9"- 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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: Friday, September 2, 2011 1:12 PMSubject: Re: Switching to INSPRA , be sure that your doc puts HTN, and not hyperaldo, as your diagnosis. My doc has said that keeping the official diagnosis as HTN makes getting things covered by insurance a whole lot easier. > > I hope my insurance will cover it. I hope the size goes away over the same time period. But, even if it doesnt, it wont hurt so much to wear tight tshirts to smash things up more. That is what i do now...compression tshirt if I am wearing other clothing that would otherwise show off my budding teenage boobs. I laugh about it mostly, but in certain situations, it is embarrassing. I dont run around without a shirt mowing lawn anyore. But, i really didnt do that all that much since i turned into a marshmellow anyway. But, the pain and tenderness being gone will be a plus. > > > ============================================================================ > 45-Male-Caucasian, 5'9"- 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS. > Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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 PainDASH: Started "sort of" DASHing 5/3/2011 > > > >To: hyperaldosteronism > >Sent: Friday, September 2, 2011 12:58 PM > >Subject: Re: Switching to INSPRA > > > > > >  > > > >, > >Your experience parallels mine. Both my primary care doc and Nephrologist refused to exceed the label max dose of Eplerenone. You can go online and read the Pfizer package insert. They say nothing about hyperaldo, only hypertension. This even complicated getting my insurance to cover the drug. The doctor had submitted paperwork stating it was to treat Hyperaldosteronism, which it is not labeled for. These days I think docs are cowed by possibility of lawsuits. If just about anything happens to your health after taking a higher than the labeled dose of anything, they could be found to be at fault. I am hoping the new endocrinologist I see next week will be more willing to work with me. > >BTW the gynecomastia stopped almost immediately. Not the size, it has been over 8 months, but the pain and swelling. > >Don Krebs > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 How is the Inspra working for you? ============================================================================45-Male-Caucasian, 5'9"- 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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: Friday, September 2, 2011 1:27 PMSubject: Re: Switching to INSPRA If you get the generic eplerenone, rather than the brand name, your copay might be comparable to spiro, especially if your doctor documents that you had gynecomastia on spiro and cannot take it. My insurance copay is the same for both. > >> > >> I hope my insurance will cover it. I hope the size goes away over the same time period. But, even if it doesnt, it wont hurt so much to wear tight tshirts to smash things up more. That is what i do now...compression tshirt if I am wearing other clothing that would otherwise show off my budding teenage boobs. I laugh about it mostly, but in certain situations, it is embarrassing. I dont run around without a shirt mowing lawn anyore. But, i really didnt do that all that much since i turned into a marshmellow anyway. But, the pain and tenderness being gone will be a plus. > >> > >> > >> ============================================================================ > >> 45-Male-Caucasian, 5'9"- 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS. > >> Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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 PainDASH: Started "sort of" DASHing 5/3/2011 > >> > >> From: Don Krebs <donkrebs@> > >> >To: hyperaldosteronism > >> >Sent: Friday, September 2, 2011 12:58 PM > >> >Subject: Re: Switching to INSPRA > >> > > >> > > >> >  > >> > > >> >, > >> >Your experience parallels mine. Both my primary care doc and Nephrologist refused to exceed the label max dose of Eplerenone. You can go online and read the Pfizer package insert. They say nothing about hyperaldo, only hypertension. This even complicated getting my insurance to cover the drug. The doctor had submitted paperwork stating it was to treat Hyperaldosteronism, which it is not labeled for. These days I think docs are cowed by possibility of lawsuits. If just about anything happens to your health after taking a higher than the labeled dose of anything, they could be found to be at fault. I am hoping the new endocrinologist I see next week will be more willing to work with me. > >> >BTW the gynecomastia stopped almost immediately. Not the size, it has been over 8 months, but the pain and swelling. > >> >Don Krebs > >> > > >> > > >> > > >> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Most lawsuits are consumer driven so they are the fault of the public and lawyers. True malpractice happens too often, but those are usually settled out of court. The cases that drive up costs and scare doctors are from those lawyers like who ran for VP, and who's completely disgraced himself now, when he made billions suing OB's because a kid was born with cerebral palsy. All he had to do was say "look, the u/s here is good, but at birth the baby wasn't; so only the doctor could have done it." That offered money to the parents and excused the mom of anything she may have done. This doctor connection of causing cerebral palsy has since been disproven by very good research, AND there does seem to be some evidence that the mothers actions do have something to do with it, but says "he fought for the little man" and validates it because he got money to people who could use it. We sure see a lot of billionaires fighting for the "little people" with someone elses money, but never their own! Point is doctors sadly HAVE to practice that way. It only takes one lawsuit to ruin one - even if it was wrong like above - and a malpractice or lawsuit is a pain because it has to be reported every time there is any change in insurance, licensing, etc. Ahh...but in the case of who's a broken and disgraced man now, Karma sure offers a wicked payback. I can't ever see this changing unless we have tort reform where someone can't win 10 million dollars based on a "maybe the doctor did it." If it's true malpractice then there is consequences and that IS money. It happens. But fear of one is a big deal and isn't changing. They use SSRI's for anxiety and they don't have an indication for that diagnosis - that's kind of another example. I guess the only reason epelerone is not listed for PA is maybe it's not been studied in the way the FDA wants it to be. Not sure Subject: Re: Switching to INSPRATo: hyperaldosteronism Date: Friday, September 2, 2011, 12:58 PM , Your experience parallels mine. Both my primary care doc and Nephrologist refused to exceed the label max dose of Eplerenone. You can go online and read the Pfizer package insert. They say nothing about hyperaldo, only hypertension. This even complicated getting my insurance to cover the drug. The doctor had submitted paperwork stating it was to treat Hyperaldosteronism, which it is not labeled for. These days I think docs are cowed by possibility of lawsuits. If just about anything happens to your health after taking a higher than the labeled dose of anything, they could be found to be at fault. I am hoping the new endocrinologist I see next week will be more willing to work with me. BTW the gynecomastia stopped almost immediately. Not the size, it has been over 8 months, but the pain and swelling. Don Krebs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 ,Obviously you are right that doctors have to practice defensive medicine. As for tort reform, here in Texas great strides have been made along that line. But even though we can sympathize with the practitioners, where does that leave us? Those of us who investigate and educate ourselves about our medical condition understand that, as this thread refers to, dosage might need to be higher than the label calls for. We cannot get proper treatment. Do we go shopping for a doctor adventurous enough to go off-label? I see this getting worse as time goes by. Maybe Pfizer will label it for hyperaldosteronism? I doubt it. Why would they invest beau-coup dollars in clinical trials and approval submissions to label a drug for such a small cohort as we? They would never recoup the money. If I cannot find a doctor, preferably an endocrinologist, that will up my dosage I might have to go back to Spironolactone. Maybe after being off for nearly a year, the gynecomastia will not return... Krebs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 It is really hard to say how well the Eplerenone is doing. The gynecomastia stopped within a week. I think, however, the dose needs to be increased. My BP is OK or too low, but I am on several other BP meds and diuretics. My cynical comment has been that after seeing me through open heart surgery, my cardiologist put me on all the drugs he wishes he had put me on before the problem surfaced. I can tell the hyperaldo symptoms are coming back. Persistent headache, edema, unexpected weight gain, 'puffy face' and so on. I think the Eplerenone almost controls the hyperaldo. Keeping up with the threads on this discussion group has me watching the Sodium more carefully. I am going to ask the new endocrinologist to take me off all the BP meds, try to control the hyperaldo before adding back other meds if necessary. I will be seeing him for the first time next week. Who knows if he will be willing to go out on a limb for a new patient? (forgive me if this message is a duplicate, I don't think my earlier reply went out)  How is the Inspra working for you? ============================================================================45-Male-Caucasian, 5'9 " - 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg Magnesium, 100,000UI Vit D (weekly), 20mg Omeprazole Side 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: Friday, September 2, 2011 1:27 PM Subject: Re: Switching to INSPRA  If you get the generic eplerenone, rather than the brand name, your copay might be comparable to spiro, especially if your doctor documents that you had gynecomastia on spiro and cannot take it. My insurance copay is the same for both. > >> > >> I hope my insurance will cover it. I hope the size goes away over the same time period. But, even if it doesnt, it wont hurt so much to wear tight tshirts to smash things up more. That is what i do now...compression tshirt if I am wearing other clothing that would otherwise show off my budding teenage boobs. I laugh about it mostly, but in certain situations, it is embarrassing. I dont run around without a shirt mowing lawn anyore. But, i really didnt do that all that much since i turned into a marshmellow anyway. But, the pain and tenderness being gone will be a plus. > >> > >> > >> ============================================================================ > >> 45-Male-Caucasian, 5'9 " - 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS. > >> Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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 PainDASH: Started " sort of " DASHing 5/3/2011 > >> > >> From: Don Krebs <donkrebs@> > >> >To: hyperaldosteronism > >> >Sent: Friday, September 2, 2011 12:58 PM > >> >Subject: Re: Switching to INSPRA > >> > > >> > > >> >  > >> > > >> >, > >> >Your experience parallels mine. Both my primary care doc and Nephrologist refused to exceed the label max dose of Eplerenone. You can go online and read the Pfizer package insert. They say nothing about hyperaldo, only hypertension. This even complicated getting my insurance to cover the drug. The doctor had submitted paperwork stating it was to treat Hyperaldosteronism, which it is not labeled for. These days I think docs are cowed by possibility of lawsuits. If just about anything happens to your health after taking a higher than the labeled dose of anything, they could be found to be at fault. I am hoping the new endocrinologist I see next week will be more willing to work with me. > >> >BTW the gynecomastia stopped almost immediately. Not the size, it has been over 8 months, but the pain and swelling. > >> >Don Krebs > >> > > >> > > >> > > >> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 They also had little sympathy for right testis pain (like someone just " rang your bell " ) 24/7 for 6 years! Haven't had a mamogram yet but she did do a manual test, that didn't hurt! ;>) - 64 yo morb. ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank & testicle pain. I have decided against an adrenalectomy at this time since Meds. are working so well. Current BP(last week ave): 123/69 Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2. and PTSD. Meds: Duloxetine hcl 80 MG, Mirtazapine 15 MG, Metoprolol Tartrate 200 MG, 81mg asprin, Metformin 2000MG and Spironolactone 50 MG. > > Well that means I have even fewer choices. I will have to wait until I see > the new endocrinologist. BTW, I find very few women sympathetic with male > gynecomastia. 'Now you know how I feel for 3 days every month,' is a comment > I have heard way too often. When I say, 'that's how I feel 24, 7, 365,' > their eyes glaze over. Too much to comprehend I guess. > So, I am very sympathetic with your experience. Also, since this has led me > to have 3 mammograms, I am a bit more sympathetic with women in general. > That HURT! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 I had 3 mammograms already as well. I didnt find them that painful, but I also have a pretty high pain tolerance...probably from 10 years of so-called fibromyalgia. I guess i have to keep having them now every 2 years. I feel more stupid being in there than pain from the process. Had an ultrasound too. Tech was crappy and i think she didnt like doing them on a man with hairy boobs. lol Note to self, shave chest before next mammogram. ============================================================================45-Male-Caucasian, 5'9"- 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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: Friday, September 2, 2011 4:34 PMSubject: Re: Switching to INSPRA Well that means I have even fewer choices. I will have to wait until I see the new endocrinologist. BTW, I find very few women sympathetic with male gynecomastia. 'Now you know how I feel for 3 days every month,' is a comment I have heard way too often. When I say, 'that's how I feel 24, 7, 365,' their eyes glaze over. Too much to comprehend I guess. So, I am very sympathetic with your experience. Also, since this has led me to have 3 mammograms, I am a bit more sympathetic with women in general. That HURT! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 I have to disagree with you. Some doctors are plain greedy and use the threat of lawsuit to defend their actions. I agree you do have the bocus lawsuits, but some of these docs are just plain neglectful. I have seen many a' dead' bodies go to surgery... the doc knew the patient wouldnt make it out of surgery. Since it is a 'travesty' to die in the Operating Room, these docs will push Vasopressors on the patient and give them a 'false' blood pressure. Then then patient will die in the ICU when in actuality they died in the OR. For example, instead of admitting he couldn't control my htn, my cardiologist chose to put in my records I was non compliant and anxious. Doctors aren't all innocent either. But lets not Hijack the thread!!!!! Just saying.... Most lawsuits are consumer driven so they are the fault of the public and lawyers. True malpractice happens too often, but those are usually settled out of court. The cases that drive up costs and scare doctors are from those lawyers like who ran for VP, and who's completely disgraced himself now, when he made billions suing OB's because a kid was born with cerebral palsy. All he had to do was say "look, the u/s here is good, but at birth the baby wasn't; so only the doctor could have done it." That offered money to the parents and excused the mom of anything she may have done. This doctor connection of causing cerebral palsy has since been disproven by very good research, AND there does seem to be some evidence that the mothers actions do have something to do with it, but says "he fought for the little man" and validates it because he got money to people who could use it. We sure see a lot of billionaires fighting for the "little people" with someone elses money, but never their own! Point is doctors sadly HAVE to practice that way. It only takes one lawsuit to ruin one - even if it was wrong like above - and a malpractice or lawsuit is a pain because it has to be reported every time there is any change in insurance, licensing, etc. Ahh...but in the case of who's a broken and disgraced man now, Karma sure offers a wicked payback. I can't ever see this changing unless we have tort reform where someone can't win 10 million dollars based on a "maybe the doctor did it." If it's true malpractice then there is consequences and that IS money. It happens. But fear of one is a big deal and isn't changing. They use SSRI's for anxiety and they don't have an indication for that diagnosis - that's kind of another example. I guess the only reason epelerone is not listed for PA is maybe it's not been studied in the way the FDA wants it to be. Not sure - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Regardless of gender, I think this is a kind of pain that one has to experience firsthand in order to sympathize. As a woman, I've had (male) doctors make jokes about how " most women enjoy the increase in breast size " - I guess I'm not " most women. " > > Well that means I have even fewer choices. I will have to wait until I see > the new endocrinologist. BTW, I find very few women sympathetic with male > gynecomastia. 'Now you know how I feel for 3 days every month,' is a comment > I have heard way too often. When I say, 'that's how I feel 24, 7, 365,' > their eyes glaze over. Too much to comprehend I guess. > So, I am very sympathetic with your experience. Also, since this has led me > to have 3 mammograms, I am a bit more sympathetic with women in general. > That HURT! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Regardless of gender, I think this is a kind of pain that one has to experience firsthand in order to sympathize. As a woman, I've had (male) doctors make jokes about how " most women enjoy the increase in breast size " - I guess I'm not " most women. " > > Well that means I have even fewer choices. I will have to wait until I see > the new endocrinologist. BTW, I find very few women sympathetic with male > gynecomastia. 'Now you know how I feel for 3 days every month,' is a comment > I have heard way too often. When I say, 'that's how I feel 24, 7, 365,' > their eyes glaze over. Too much to comprehend I guess. > So, I am very sympathetic with your experience. Also, since this has led me > to have 3 mammograms, I am a bit more sympathetic with women in general. > That HURT! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 I don't enjoy it either.... where is your pain? Is it in the tissue or the muscle? Regardless of gender, I think this is a kind of pain that one has to experience firsthand in order to sympathize. As a woman, I've had (male) doctors make jokes about how "most women enjoy the increase in breast size" - I guess I'm not "most women." -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 I'm not really certain - all I know is that the slightest touch or movement feels like somebody punched me. > > > > Regardless of gender, I think this is a kind of pain that one has to > > experience firsthand in order to sympathize. As a woman, I've had > > (male) doctors make jokes about how " most women enjoy the increase in > > breast size " - I guess I'm not " most women. " > > > > -- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 It is approved to treat HTN and if you have HTN it can be used. One does not need to mention PA.CE Grim MD ,Your experience parallels mine. Both my primary care doc and Nephrologist refused to exceed the label max dose of Eplerenone. You can go online and read the Pfizer package insert. They say nothing about hyperaldo, only hypertension. This even complicated getting my insurance to cover the drug. The doctor had submitted paperwork stating it was to treat Hyperaldosteronism, which it is not labeled for. These days I think docs are cowed by possibility of lawsuits. If just about anything happens to your health after taking a higher than the labeled dose of anything, they could be found to be at fault. I am hoping the new endocrinologist I see next week will be more willing to work with me. BTW the gynecomastia stopped almost immediately. Not the size, it has been over 8 months, but the pain and swelling. Don Krebs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Maybe you will get " lucky " and your hair will all fall out like it did for some of us! - 64 yo morb. ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank & testicle pain. I have decided against an adrenalectomy at this time since Meds. are working so well. Current BP(last week ave): 123/69 Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2. and PTSD. Meds: Duloxetine hcl 80 MG, Mirtazapine 15 MG, Metoprolol Tartrate 200 MG, 81mg asprin, Metformin 2000MG and Spironolactone 50 MG. > > I had 3 mammograms already as well. I didnt find them that painful, but I also have a pretty high pain tolerance...probably from 10 years of so-called fibromyalgia. I guess i have to keep having them now every 2 years. I feel more stupid being in there than pain from the process. Had an ultrasound too. Tech was crappy and i think she didnt like doing them on a man with hairy boobs. lol Note to self, shave chest before next mammogram. > > > ============================================================================ > 45-Male-Caucasian, 5'9 " - 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS. > Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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 PainDASH: Started " sort of " DASHing 5/3/2011 > > > >To: hyperaldosteronism > >Sent: Friday, September 2, 2011 4:34 PM > >Subject: Re: Switching to INSPRA > > > > > >  > > > >Well that means I have even fewer choices. I will have to wait until I see the new endocrinologist. BTW, I find very few women sympathetic with male gynecomastia. 'Now you know how I feel for 3 days every month,' is a comment I have heard way too often. When I say, 'that's how I feel 24, 7, 365,' their eyes glaze over. Too much to comprehend I guess. > >So, I am very sympathetic with your experience. Also, since this has led me to have 3 mammograms, I am a bit more sympathetic with women in general. That HURT! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Be sure to have him monitor your urine Na and K so he can tell if there is room to improve DASH and reduce BP meds. Remind him that most BP drugs do not work in PA as discussed in my Evolution Article.CE Grim MD It is really hard to say how well the Eplerenone is doing. The gynecomastia stopped within a week. I think, however, the dose needs to be increased. My BP is OK or too low, but I am on several other BP meds and diuretics. My cynical comment has been that after seeing me through open heart surgery, my cardiologist put me on all the drugs he wishes he had put me on before the problem surfaced. I can tell the hyperaldo symptoms are coming back. Persistent headache, edema, unexpected weight gain, 'puffy face' and so on. I think the Eplerenone almost controls the hyperaldo. Keeping up with the threads on this discussion group has me watching the Sodium more carefully. I am going to ask the new endocrinologist to take me off all the BP meds, try to control the hyperaldo before adding back other meds if necessary. I will be seeing him for the first time next week. Who knows if he will be willing to go out on a limb for a new patient? . Sent by GranPaSmurfUniversal City, TX THANK YOU for deleting my address, any other addresses, and personal information, from this e-mail, if you plan to forward it. THANK YOU also for using "Bcc" instead of "To" and "Cc" when initiating both individual and group e-mails. This helps prevent spammers, hackers and radicals from obtaining addresses, and thus the proliferation of spam. How is the Inspra working for you? ============================================================================45-Male-Caucasian, 5'9"- 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg Magnesium, 100,000UI Vit D (weekly), 20mg Omeprazole Side 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: Friday, September 2, 2011 1:27 PM Subject: Re: Switching to INSPRA If you get the generic eplerenone, rather than the brand name, your copay might be comparable to spiro, especially if your doctor documents that you had gynecomastia on spiro and cannot take it. My insurance copay is the same for both. > >> > >> I hope my insurance will cover it. I hope the size goes away over the same time period. But, even if it doesnt, it wont hurt so much to wear tight tshirts to smash things up more. That is what i do now...compression tshirt if I am wearing other clothing that would otherwise show off my budding teenage boobs. I laugh about it mostly, but in certain situations, it is embarrassing. I dont run around without a shirt mowing lawn anyore. But, i really didnt do that all that much since i turned into a marshmellow anyway. But, the pain and tenderness being gone will be a plus. > >> > >> > >> ============================================================================ > >> 45-Male-Caucasian, 5'9"- 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS. > >> Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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 PainDASH: Started "sort of" DASHing 5/3/2011 > >> > >> From: Don Krebs <donkrebs@> > >> >To: hyperaldosteronism > >> >Sent: Friday, September 2, 2011 12:58 PM > >> >Subject: Re: Switching to INSPRA > >> > > >> > > >> >  > >> > > >> >, > >> >Your experience parallels mine. Both my primary care doc and Nephrologist refused to exceed the label max dose of Eplerenone. You can go online and read the Pfizer package insert. They say nothing about hyperaldo, only hypertension. This even complicated getting my insurance to cover the drug. The doctor had submitted paperwork stating it was to treat Hyperaldosteronism, which it is not labeled for. These days I think docs are cowed by possibility of lawsuits. If just about anything happens to your health after taking a higher than the labeled dose of anything, they could be found to be at fault. I am hoping the new endocrinologist I see next week will be more willing to work with me. > >> >BTW the gynecomastia stopped almost immediately. Not the size, it has been over 8 months, but the pain and swelling. > >> >Don Krebs > >> > > >> > > >> > > >> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 If you are on spiro and have had one normal mammo would not think you need another.CE Grim Well that means I have even fewer choices. I will have to wait until I see the new endocrinologist. BTW, I find very few women sympathetic with male gynecomastia. 'Now you know how I feel for 3 days every month,' is a comment I have heard way too often. When I say, 'that's how I feel 24, 7, 365,' their eyes glaze over. Too much to comprehend I guess. So, I am very sympathetic with your experience. Also, since this has led me to have 3 mammograms, I am a bit more sympathetic with women in general. That HURT! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Take him the Endo Guidelines. The packet insert does not mention dosing in PA. Just step it up every 2 weeks. CE Grim MD Met with my Dr Today. He was very happy with how my lower salt diet has cured my renal calcium leak. My office BP was 110/78. We didnt do urine this time, but will after I have been on Inspra. Decided to try INSPRA and hopefully end the gyno. I measured up and it appears I would take a 46B bra if I wore one...for goodness sake...time to out an end to that! I pray it will reverse somewhat so I can stop thinking about it...and hopefully not get any worse going forward. He wasnt sure on the dosing as the directions for him were (up to 50mg) a day for dosing. We will try that and I will be more vigilant about dash. I told him Dr Grim suggested double what Spiro would be, but he wasnt comforable starting out with 4 times the recommended dosing by the manufacturer. I'll just watch the BP and treat the PA symptoms by varying my K intake for the first month. Although, I suspect spiro might still have an impact for a while too. Fortunately I am pretty sensative to what is going on, so I can tell when the K is getting low before it gets dangerously low. It is amazing how much we all have learned about this stuff from each other. ============================================================================45-Male-Caucasian, 5'9"- 242lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 100mg Spiro, 40meq Potassium, 1800mg Calcium, 500mg 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 5/3/2011 Quote Link to comment Share on other sites More sharing options...
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