Chief Cushie ~MaryO~ Posted July 15, 2008 Chief Cushie Report Share Posted July 15, 2008 August 2008, 15:4 > Diagnosis and management of primary... Long URL Diagnosis and management of primary aldosteronism. Neuroendocrinology Current Opinion in Endocrinology, Diabetes & Obesity. 15(4):332-338, August 2008. Boscaro, Marco; Ronconi, Vanessa; Turchi, Federica; Giacchetti, Gilberta Abstract: Purpose of review: To illustrate the steps for clinical management of primary aldosteronism from screening evaluation to surgical and/or medical treatment. Recent findings: It is now widely accepted that primary aldosteronism represents the most common form of endocrine hypertension and its early diagnosis is crucial for hypertensive patients who can be cured by the surgical removal of an aldosterone-secreting adenoma or benefit from a specific medical treatment with mineralocorticoid receptor antagonists. Recent evidence indicates that hyperaldosteronism is indeed associated with detrimental consequences on cardiovascular system, renal function and glucose metabolism. Summary: The diagnostic protocol for primary aldosteronism requires multistep evaluation and should begin with a screening test, followed when appropriate, by confirmatory test and functional and anatomical evaluation. Finally, although it is technically difficult and the cut-off levels for acceptance of the success are not standardized, the subtype forms should be identified using a selective adrenal venous sampling. © 2008 Lippincott Williams & Wilkins, Inc. Link to comment Share on other sites More sharing options...
amanda w. Posted July 16, 2008 Report Share Posted July 16, 2008 I was just diagnoised with this and undiagnoised with cushings. Do you have any more info on this. Because my labs came back as I had normal values of aldosterroe. However, due to blood pressure and the how quickly I cycle I no longer have cushings. I want to find out more about this because they are giving me meds (eplerone) which will make me sick by messing with the sodium and potassium levels. Both of my adrenals are enlargerd seen on x-ray and CT without a discrete mass. Which means they are not sure. They will not do an MRI, and the tumor on the pit. has disappeared. I am not sure where it went. I now have FMD (beading of the arteries of the kidneys). However, as far as cushings goes I do not have it and the recommendations was to go to the gym and the psych. I know I have this I just have to prove. If I can prove that I do not have alddostersoism. Maybe they will look for diffrent answers. However, I need more info on this. If you have a good web site, please send it to me. Thanks, amanda Link to comment Share on other sites More sharing options...
justashell Posted July 16, 2008 Report Share Posted July 16, 2008 www.endotext.org It might be worth contacting one of the doctors listed---you've been through a whole heck of a lot---and it doesn't make sense. Link to comment Share on other sites More sharing options...
amanda w. Posted July 16, 2008 Report Share Posted July 16, 2008 Thank you shelley Amanda Link to comment Share on other sites More sharing options...
judycolby Posted July 17, 2008 Report Share Posted July 17, 2008 Amanda, when I looked up symptoms of aldosteronism I was a bit confused as I thought you had alot of symptoms unrelated to this. SymptomsHigh blood pressure that doesn't respond completely to medication is the most common sign of primary aldosteronism. Other common signs include low potassium levels (hypokalemia) and the presence of a noncancerous (benign) tumor on one or both of the adrenal glands. Less common signs and symptoms of this condition may include: Headache Muscle weakness and cramps Fatigue Temporary paralysis Numbness Pricking, tingling sensation Excessive thirst Excessive urination I think it's possible to have aldosteronism and Cushing's. Have you considered finding another doctor? Judy Link to comment Share on other sites More sharing options...
viumber Posted July 17, 2008 Report Share Posted July 17, 2008 Amanda, I had both hyperaldosteronism and cushings. There is a site you can go to. You will probably be asked to join but costs nothing and Dr Grim should be able to answer most of your questions and point you to many articles he's written. Go to Yahoo, then click on groups (on the left side) and type in hyperaldosteronism. Hope this helps. I have not been on the site for probably a year but if you have more questions you can pm me. Violet Link to comment Share on other sites More sharing options...
viumber Posted July 17, 2008 Report Share Posted July 17, 2008 Amanda I also wanted to add that I was put on Triam/hydrochlorizide and it worked wonders when all the other meds failed. Also spirolactone (sp). I never used this one. But maybe you can ask your doctor if they might help. After BLA I am done with both Cushings and Conn's. Violet Link to comment Share on other sites More sharing options...
amanda w. Posted July 18, 2008 Report Share Posted July 18, 2008 Amanda, when I looked up symptoms of aldosteronism I was a bit confused as I thought you had alot of symptoms unrelated to this. I think it's possible to have aldosteronism and Cushing's. Have you considered finding another doctor? Judy Defintley I have considered a new dr. I found the same info so far. I do have a number of them symptoms. However, they are also signs of cushings, which is what I believe I have. There is one symptom I found in another article, which I DO NOT have. It says one with hyperaldostronism had high levels of aldosttone. However, per recnet labs my values are normal. I think somone is a quack quack quack. However I could be wrong though. I have been know to be wrong before. Thanks for the info. Amanda Link to comment Share on other sites More sharing options...
judycolby Posted July 18, 2008 Report Share Posted July 18, 2008 an aldosteronoma-you have a consitently suppressed renin and a high aldo The patient has several possible reasons for his hypertension. He did have an aldosterone level of 15 with a renin of less than 0.15. This is quite indicative of hyperaldosteronism Amanda, these are quotes from Dr. F. in his report on my husband. Violet, thanks for that link, I need to learn more as there is a good chance Bill has this. Judy eta - Amanda, is your blood pressure pretty high? Link to comment Share on other sites More sharing options...
amanda w. Posted July 18, 2008 Report Share Posted July 18, 2008 Amanda, these are quotes from Dr. F. in his report on my husband. Violet, thanks for that link, I need to learn more as there is a good chance Bill has this. Judy eta - Amanda, is your blood pressure pretty high? Here are my values: Renin Activity 3.5 - ug/L/hr Renin reference range: Upright= 0.8-5.8 Supine= 0.5-1.8 Aldosterone 28.1 ref range 4.5-35.4 ng/dL ( this was a blood test) This was a 24 hour urine Component Your Value Standard Range Flag Aldosterone Urine 19 3-25 ug/24hr Sodium 24 hr 235 40-220 mmol/24hr H Potassium 24 hr 88 30-99 mmol/24hr Yes my BP normally runs high. The past month or so it has been going low. I am in a low right now. Although my tests for cortisol are still elevated or high. My BP's have been extremeley low latley. Again thanks for all this input. I know I need to do a lot more reading up on this. Amanda Link to comment Share on other sites More sharing options...
judycolby Posted July 18, 2008 Report Share Posted July 18, 2008 I know I need to do a lot more reading up on this. Me too, if Bill has this. He fits the profile. Is still testing for Cushing's also as some things don't fit. But Dr. F is sure enough that he wants him to get a venus adrenal sampling for aldosterone & cortisol. Are your adrenals clear or do you know? Bill has a 9 mm tumor on his left adrenal. Judy Mary, I'm glad you brought this up, it just became relevant to us last night. I need all the info I can get. Link to comment Share on other sites More sharing options...
amanda w. Posted July 18, 2008 Report Share Posted July 18, 2008 Me too, if Bill has this. He fits the profile. Is still testing for Cushing's also as some things don't fit. But Dr. F is sure enough that he wants him to get a venus adrenal sampling for aldosterone & cortisol. Are your adrenals clear or do you know? Bill has a 9 mm tumor on his left adrenal.Judy Mary, I'm glad you brought this up, it just became relevant to us last night. I need all the info I can get. When I went up to CC in June only my left adrenal was enlarged without discrete mass. In the clinic letter today they talked about surgery if it was only unilateral. However, per my most recent scan both the right and left adreanal are now enlarged and both without a discrete mass. I have asked to have an MRI and they do not think one needs to be done. This is a great topic. Amanda Link to comment Share on other sites More sharing options...
judycolby Posted July 18, 2008 Report Share Posted July 18, 2008 Bill had a CT and MRI of the adrenals. MRI found the tumor, CT said clear. Dr. F sent it to some other radiologist for his opinion. He said he saw something on the CT exactly where it was on the MRI. I'm glad Dr. F decided to add an MRI once we saw him. Primary aldosteronism may also be caused by a condition known as bilateral adrenal hyperplasia in which both adrenal glands are overproducing aldosterone. Researchers do not know the reason why this disorder occurs. Aldosteronism is curable by surgery if the cause is a single adenoma. Bilateral adrenal hyperplasia is not curable without removing both adrenal glands. Only Bill's left gland looks affected at the moment. I wonder about yours going from just the left to both - makes you wonder if it's "spreading" or if the right wasn't seen on the other CT. Have they mentioned doing a sampling so they know if one/both sides are secreting? Don't you hate having to learn a new disease? And can't a tumor on the pit cause things on the adrenals. Bill's pit MRI was read as normal but I like all my bases covered and am having Dr. McC read it too. If he sees something there and there is something on the adrenals, it muddies the water. I'm sorry Amanda, I can't remember, have they found a pit tumor? Judy Actually, after reading some of this and how it relates to potassium and sodium it makes me wonder if a lot of Cushies don't have this problem to some degree. Link to comment Share on other sites More sharing options...
amanda w. Posted July 18, 2008 Report Share Posted July 18, 2008 Bill had a CT and MRI of the adrenals. MRI found the tumor, CT said clear. Dr. F sent it to some other radiologist for his opinion. He said he saw something on the CT exactly where it was on the MRI. I'm glad Dr. F decided to add an MRI once we saw him. Only Bill's left gland looks affected at the moment. I wonder about yours going from just the left to both - makes you wonder if it's "spreading" or if the right wasn't seen on the other CT. Have they mentioned doing a sampling so they know if one/both sides are secreting? Don't you hate having to learn a new disease? And can't a tumor on the pit cause things on the adrenals. Bill's pit MRI was read as normal but I like all my bases covered and am having Dr. McC read it too. If he sees something there and there is something on the adrenals, it muddies the water. I'm sorry Amanda, I can't remember, have they found a pit tumor? Judy Actually, after reading some of this and how it relates to potassium and sodium it makes me wonder if a lot of Cushies don't have this problem to some degree. Yes, you can have both problems adrenals and pituitry cushings at the same time. I have had a tumor on the left side of the pit. but it got so big it disppeared. Then they undiagnoised me with cushings. ( THis is the short version, if you pm me with your email I will go more into detail). Yes, I hate learning a new disease, however atllest I am learning and can no what is going on. It helps me cope to know why I am feeling the way I am. However, when you start having tumors on more than i think 3 or more thru out the endrocrine system you may be looking at MEN I or MEN II ( multiple endocrine Neoplasia) that is somthing I also have bee researching. The doctors I have right now ...well......let me put it nicley with out being to negative ( Do not listen to their patients and look over the testing results carefully, in my opinion). I am wondering the same thing if they just did not mention the right adreanl in previous scans. I am wondering why they refuse to do an MRI also. The adrenal (left ) has been enlarged now ever since they done the first scan a couple years agao and dx me with cushings. (Although a couple weeks ago they undiagnoised me). This is crazy. I hope you get some answers for Bill. Dr McC is really good and so is Dr F. So ...things should move along pretty quick. Also, they all seem to take the time to go thru everything ( I will try to spell this word) thorough or somthing Like that. I can say the word but can not spell the word I am looiking for LOL You and Bill are in good hands. amanda Link to comment Share on other sites More sharing options...
Chief Cushie ~MaryO~ Posted July 18, 2008 Author Chief Cushie Report Share Posted July 18, 2008 A bit more http://www.theendocrinologist.org/pt/re/en...#33;8091!-1 July/August 2008, 18:4 > Making an Unexpected Diagnosis... < Previous | Next > ARTICLE LINKS: Fulltext | PDF (52 K) Making an Unexpected Diagnosis of a Rare Disorder. CME Review Article #12 Endocrinologist. 18(4):195-198, July/August 2008. Bancos, Irina MD *; Botnaru, Radu MD +; Raut, Raymond MD ++; Belsky, Joseph MD ; Gervasi, Richard MD [P] Abstract: Glucocorticoid-remediable aldosteronism (GRA) is a rarely recognized form of primary aldosteronism in which aldosterone secretion is solely under the control of adrenocorticotropic hormone (ACTH). It is often characterized by moderate to severe arterial hypertension occurring early in life, volume expansion, variable levels of hyperaldosteronism, very low plasma renin activity and hypokalemia. We report a case of a young man in whom the diagnosis of GRA was suspected after the observation of hypotension while using topical steroids. © 2008 Lippincott Williams & Wilkins, Inc. Link to comment Share on other sites More sharing options...
justashell Posted July 18, 2008 Report Share Posted July 18, 2008 Quote: Finally, although it is technically difficult and the cut-off levels for acceptance of the success are not standardized, the subtype forms should be identified using a selective adrenal venous sampling. Unquote It sounds like they're still figuring this thing out. Good luck Amanda! Link to comment Share on other sites More sharing options...
Over 2000 Posts da89165 Posted July 18, 2008 Over 2000 Posts Report Share Posted July 18, 2008 Thank you Mary!!!! This is something I'm keeping an eye on as a possibility for my Mom as well. -She's got 3 adrenal tumors which involve both glands....all are about 2x2 cm -Nodules on her thyroid -Out of control hypertension....200/100 for many days a few weeks ago till they added a 3rd hypertension med -Scored 254 with high end of scale 142 for plasma free metaephedrines (99% accurate for pheochromacytoma) -She's also got low parathyroid with conflicts with MENS, but maybe this GRA is a possibility.... ....sure wish we were getting paid for all this learning!!!! Link to comment Share on other sites More sharing options...
judycolby Posted July 18, 2008 Report Share Posted July 18, 2008 ....sure wish we were getting paid for all this learning!!!! Maybe we're ready to hang out our shingle?LOL Judy Link to comment Share on other sites More sharing options...
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