Guest guest Posted June 15, 2007 Report Share Posted June 15, 2007 a, I spent almost 30 years with Cushing's. I finally flew to LA, to Dr T Friedman, a specialist in endocrine problems and researcher and teacher. He diagnosed me the first meeting with him and I spent lots of time and money doing tests at home that he wanted. My local doctor was very good about doing tests that needed done then. But got some high tests and some low. I was very cyclic which is why the 2 or 3 tests that had been done before I saw him were normal. I had loss of diurnal rythum. Morning tests were low or very low and night time high but of course not always. Had tumor on pit removed and 2 years later adrenals. I had 6 tumors on adrenals and 2 tumors adjacent to adrenals none of which showed up on MRI's. I just had it so long I'm just not sure if I will ever be normal. It did a lot of damage but my blood pressure is normal now so am thanful for that. The tests that really worked best for me were midnight blood cortisol tests and late night saliva tests. UFC's were almost always normal because of the averaging out of daytime and night levels. I must have done 40-50 of the UFC's and only 4-5 were above normal. You mention body builds like a cousin. Is it like a fat pad on back of neck (buffalo hump) and superclavical fat pad around neck, and abdomen like you are 9 months pregnant. I didn't even realise what it was just knew I couldn't wear normal clothes. Sorry Dr Grim, I don't mean to hijack your site. It just hit home that maybe a could possibly have cushing's too. Violet a Hall <shahall@...> wrote: Violet, I've thought for many years that I might have Cushing's but the Endo poo-poo'ed it because he said my cortisol level was normal (check once). But my aldosterone level was normal once too (check many times), even thought I am a proven Conn's. I have a first cousin who had Cushings and had his pituitary removed. We could pass for twins, our body builds are exactly the same. We look like Tweedle-Dee and Tweedle-Dum. How did they diagnose the Cushings on you? a --- Violet Umber <viumber@...> wrote: > a, > The brain fog, chronic fatigue and weight gain can > also be caused by Cushing's syndrome. I know. I had > Cushing's and Conn's and still strugling from the > effects of it even a year after surgery to remove > adrenals. Violet --------------------------------- Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2007 Report Share Posted June 15, 2007 I have the whole shot, buffalo hump, no neck, abdominal & chest obesity, dry skin, high blood sugars, bruise easily, etc. About 25 years ago when my blood pressure first went sky-high and I was sent to the first Endo, he suspected Cushings. I know he said my cortisol level was high and I was given an overnight dexamethasone suppression test. I suppressed and he said I didn't have Cushings. His diagnosis was non-congenital adrenal hyperplasia and that was the first time I was placed on spiro. I spent over a year going through the tests for PA and I don't know if I'm up to going through more. Not to mention the cost, the last Endo I went to charged $125 per office visit and he was never with me for more than 10 minutes at a time. I'm chronically tired and can barely get through a day of work any more. Do you feel better now, I guess you're on Florinef? BTW, my cousin had adrenal and pituitary tumors, too. a --- Violet Umber <viumber@...> wrote: > a, > I spent almost 30 years with Cushing's. I finally > flew to LA, to Dr T Friedman, a specialist in > endocrine problems and researcher and teacher. He > diagnosed me the first meeting with him and I spent > lots of time and money doing tests at home that he > wanted. My local doctor was very good about doing > tests that needed done then. But got some high tests > and some low. I was very cyclic which is why the 2 > or 3 tests that had been done before I saw him were > normal. I had loss of diurnal rythum. Morning tests > were low or very low and night time high but of > course not always. Had tumor on pit removed and 2 > years later adrenals. I had 6 tumors on adrenals and > 2 tumors adjacent to adrenals none of which showed > up on MRI's. I just had it so long I'm just not sure > if I will ever be normal. It did a lot of damage but > my blood pressure is normal now so am thanful for > that. > The tests that really worked best for me were > midnight blood cortisol tests and late night saliva > tests. UFC's were almost always normal because of > the averaging out of daytime and night levels. I > must have done 40-50 of the UFC's and only 4-5 were > above normal. > You mention body builds like a cousin. Is it like > a fat pad on back of neck (buffalo hump) and > superclavical fat pad around neck, and abdomen like > you are 9 months pregnant. I didn't even realise > what it was just knew I couldn't wear normal > clothes. > Sorry Dr Grim, I don't mean to hijack your site. > It just hit home that maybe a could possibly > have cushing's too. > Violet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2007 Report Share Posted June 16, 2007 a, I suppressed on dex too but still had Cushing's. I was put on Triam/HCTZ for my blood pressure and that worked except sometimes it took it too low. What state do you live in. I live in Minnesota and I flew to LA by myself. Quite a feat for a country bumpkin. I knew it was that or slowly die. I feel better most days but am now dealing with heavy metal poisoning from gadolinium from 6 dynamic MRI's and also high lead levels. Treating this has also made me sick. But I have good days too. You may want to try a cushings site. www.cushings-help.com Lots of people dealing with the same things. I got lots of help from them. Good Luck and God Bless, Violet PS I'm on florinef, hydrocortisone, DHEA,and synthroid. Blood pressure meds gone!!! a Hall <shahall@...> wrote: I have the whole shot, buffalo hump, no neck, abdominal & chest obesity, dry skin, high blood sugars, bruise easily, etc. About 25 years ago when my blood pressure first went sky-high and I was sent to the first Endo, he suspected Cushings. I know he said my cortisol level was high and I was given an overnight dexamethasone suppression test. I suppressed and he said I didn't have Cushings. His diagnosis was non-congenital adrenal hyperplasia and that was the first time I was placed on spiro. I spent over a year going through the tests for PA and I don't know if I'm up to going through more. Not to mention the cost, the last Endo I went to charged $125 per office visit and he was never with me for more than 10 minutes at a time. I'm chronically tired and can barely get through a day of work any more. Do you feel better now, I guess you're on Florinef? BTW, my cousin had adrenal and pituitary tumors, too. a --- Violet Umber <viumber@...> wrote: > a, > I spent almost 30 years with Cushing's. I finally > flew to LA, to Dr T Friedman, a specialist in > endocrine problems and researcher and teacher. He > diagnosed me the first meeting with him and I spent > lots of time and money doing tests at home that he > wanted. My local doctor was very good about doing > tests that needed done then. But got some high tests > and some low. I was very cyclic which is why the 2 > or 3 tests that had been done before I saw him were > normal. I had loss of diurnal rythum. Morning tests > were low or very low and night time high but of > course not always. Had tumor on pit removed and 2 > years later adrenals. I had 6 tumors on adrenals and > 2 tumors adjacent to adrenals none of which showed > up on MRI's. I just had it so long I'm just not sure > if I will ever be normal. It did a lot of damage but > my blood pressure is normal now so am thanful for > that. > The tests that really worked best for me were > midnight blood cortisol tests and late night saliva > tests. UFC's were almost always normal because of > the averaging out of daytime and night levels. I > must have done 40-50 of the UFC's and only 4-5 were > above normal. > You mention body builds like a cousin. Is it like > a fat pad on back of neck (buffalo hump) and > superclavical fat pad around neck, and abdomen like > you are 9 months pregnant. I didn't even realise > what it was just knew I couldn't wear normal > clothes. > Sorry Dr Grim, I don't mean to hijack your site. > It just hit home that maybe a could possibly > have cushing's too. > Violet --------------------------------- Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2007 Report Share Posted June 17, 2007 No problem. Some Cushings have HTN due to excess cortisol and also have low Ks. Ususally you can suspect the Dx whenn the pt walks in the room. As you know some are difficult to Dx correctly. No one ever told me medicine was easy. In a message dated 6/16/07 9:31:01 AM, viumber@... writes: > > a, > I suppressed on dex too but still had Cushing's. I was put on Triam/HCTZ for > my blood pressure and that worked except sometimes it took it too low. > What state do you live in. I live in Minnesota and I flew to LA by myself. > Quite a feat for a country bumpkin. I knew it was that or slowly die. > I feel better most days but am now dealing with heavy metal poisoning from > gadolinium from 6 dynamic MRI's and also high lead levels. Treating this has > also made me sick. But I have good days too. > You may want to try a cushings site. www.cushings- You may want to try a > cushings site. www.cushings-<wbr>help.com Lots of people d > Good Luck and God Bless, Violet > PS I'm on florinef, hydrocortisone, DHEA,and synthroid. Blood pressure meds > gone!!! > > a Hall <shahall@...> wrote: > I have the whole shot, buffalo hump, no neck, > abdominal & chest obesity, dry skin, high blood > sugars, bruise easily, etc. About 25 years ago when > my blood pressure first went sky-high and I was sent > to the first Endo, he suspected Cushings. I know he > said my cortisol level was high and I was given an > overnight dexamethasone suppression test. I > suppressed and he said I didn't have Cushings. His > diagnosis was non-congenital adrenal hyperplasia and > that was the first time I was placed on spiro. I spent > over a year going through the tests for PA and I don't > know if I'm up to going through more. Not to mention > the cost, the last Endo I went to charged $125 per > office visit and he was never with me for more than 10 > minutes at a time. I'm chronically tired and can > barely get through a day of work any more. Do you feel > better now, I guess you're on Florinef? BTW, my > cousin had adrenal and pituitary tumors, too. > > a > > --- Violet Umber <viumber@...> wrote: > > > a, > > I spent almost 30 years with Cushing's. I finally > > flew to LA, to Dr T Friedman, a specialist in > > endocrine problems and researcher and teacher. He > > diagnosed me the first meeting with him and I spent > > lots of time and money doing tests at home that he > > wanted. My local doctor was very good about doing > > tests that needed done then. But got some high tests > > and some low. I was very cyclic which is why the 2 > > or 3 tests that had been done before I saw him were > > normal. I had loss of diurnal rythum. Morning tests > > were low or very low and night time high but of > > course not always. Had tumor on pit removed and 2 > > years later adrenals. I had 6 tumors on adrenals and > > 2 tumors adjacent to adrenals none of which showed > > up on MRI's. I just had it so long I'm just not sure > > if I will ever be normal. It did a lot of damage but > > my blood pressure is normal now so am thanful for > > that. > > The tests that really worked best for me were > > midnight blood cortisol tests and late night saliva > > tests. UFC's were almost always normal because of > > the averaging out of daytime and night levels. I > > must have done 40-50 of the UFC's and only 4-5 were > > above normal. > > You mention body builds like a cousin. Is it like > > a fat pad on back of neck (buffalo hump) and > > superclavical fat pad around neck, and abdomen like > > you are 9 months pregnant. I didn't even realise > > what it was just knew I couldn't wear normal > > clothes. > > Sorry Dr Grim, I don't mean to hijack your site. > > It just hit home that maybe a could possibly > > have cushing's too. > > Violet > > ------------ -------- -------- -- > Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel > and lay it on us. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2007 Report Share Posted June 17, 2007 I would guess that 999/1000 that look like they have Cushing's when they walk through the door dont. They have what we call pseudo Cushing's . They look like they have it but don't. Good trial might be to use spiro to see if BP reverses. As it is a mineralocorticoid type HTN. but renins will be low AND aldos will be very low. In a message dated 6/16/07 9:31:01 AM, viumber@... writes: > > a, > I suppressed on dex too but still had Cushing's. I was put on Triam/HCTZ for > my blood pressure and that worked except sometimes it took it too low. > What state do you live in. I live in Minnesota and I flew to LA by myself. > Quite a feat for a country bumpkin. I knew it was that or slowly die. > I feel better most days but am now dealing with heavy metal poisoning from > gadolinium from 6 dynamic MRI's and also high lead levels. Treating this has > also made me sick. But I have good days too. > You may want to try a cushings site. www.cushings- You may want to try a > cushings site. www.cushings-<wbr>help.com Lots of people d > Good Luck and God Bless, Violet > PS I'm on florinef, hydrocortisone, DHEA,and synthroid. Blood pressure meds > gone!!! > > a Hall <shahall@...> wrote: > I have the whole shot, buffalo hump, no neck, > abdominal & chest obesity, dry skin, high blood > sugars, bruise easily, etc. About 25 years ago when > my blood pressure first went sky-high and I was sent > to the first Endo, he suspected Cushings. I know he > said my cortisol level was high and I was given an > overnight dexamethasone suppression test. I > suppressed and he said I didn't have Cushings. His > diagnosis was non-congenital adrenal hyperplasia and > that was the first time I was placed on spiro. I spent > over a year going through the tests for PA and I don't > know if I'm up to going through more. Not to mention > the cost, the last Endo I went to charged $125 per > office visit and he was never with me for more than 10 > minutes at a time. I'm chronically tired and can > barely get through a day of work any more. Do you feel > better now, I guess you're on Florinef? BTW, my > cousin had adrenal and pituitary tumors, too. > > a > > --- Violet Umber <viumber@...> wrote: > > > a, > > I spent almost 30 years with Cushing's. I finally > > flew to LA, to Dr T Friedman, a specialist in > > endocrine problems and researcher and teacher. He > > diagnosed me the first meeting with him and I spent > > lots of time and money doing tests at home that he > > wanted. My local doctor was very good about doing > > tests that needed done then. But got some high tests > > and some low. I was very cyclic which is why the 2 > > or 3 tests that had been done before I saw him were > > normal. I had loss of diurnal rythum. Morning tests > > were low or very low and night time high but of > > course not always. Had tumor on pit removed and 2 > > years later adrenals. I had 6 tumors on adrenals and > > 2 tumors adjacent to adrenals none of which showed > > up on MRI's. I just had it so long I'm just not sure > > if I will ever be normal. It did a lot of damage but > > my blood pressure is normal now so am thanful for > > that. > > The tests that really worked best for me were > > midnight blood cortisol tests and late night saliva > > tests. UFC's were almost always normal because of > > the averaging out of daytime and night levels. I > > must have done 40-50 of the UFC's and only 4-5 were > > above normal. > > You mention body builds like a cousin. Is it like > > a fat pad on back of neck (buffalo hump) and > > superclavical fat pad around neck, and abdomen like > > you are 9 months pregnant. I didn't even realise > > what it was just knew I couldn't wear normal > > clothes. > > Sorry Dr Grim, I don't mean to hijack your site. > > It just hit home that maybe a could possibly > > have cushing's too. > > Violet > > ------------ -------- -------- -- > Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel > and lay it on us. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2007 Report Share Posted June 17, 2007 Have you had sleep study? May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2007 Report Share Posted June 17, 2007 In a message dated 6/15/07 2:34:27 PM, shahall@... writes: > > Yes, the bill to my insurance was about $14,000 and I > believed they reimbursed them about $5,000. But I > only had to pay about $250. I have bilateral adrenal > adenomas. The AVS was done on the off-chance that > only one was functional and I might be a sugical > candidate. Unfortunately the AVS showed bilateral > hypersecretion. Spiro controls my BP and K+ but I > continue to have many other symptoms such as muscle > weakness, chronic fatigue, nocturia, poor memory, > numbness and tingling and sweating. I feel like crap > about 80% of the time. > > > Sounds like you are not on enough spiron or not DASHing hard enough. Have someone measure how much Na and K is in your urine. Dont recall if you have been on Inspra? May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2007 Report Share Posted June 17, 2007 In a message dated 6/15/07 1:45:45 PM, leslie@... writes: > > Actually, I usually drink my low sodium V-8 AND take the pills (60 meq > daily). My last set of labs (a few weeks ago) still showed my potassium in the > lower half of the normal range. I'm looking at the bottle right now and 8 ounces > is 820 mg of K and 140 of sodium. If I'm figuring things right, I'd need 3 > cups of low sodium V-8 daily to replace my current supplementation (which > translates to 420 mg of sodium). That figures out to about one 46 ounce bottle > every two days, times $4.50 per bottle = $67.50 per month. Could be worse, I > guess... I'll have to give that some thought. > > > > > The low sodium cans (11.5 oz) I just got al Walmart (dont recall cost) contains 1180 of K and 200 of mg of Na. Should be some organic tomato juice with lower Na but have not found it. Guess one could use a juicer. 1180 mg /32 = about 37 mM of K Some folks will also turn orange if they drink or eat to much red and yellow fruit. One of our folks here was seen by Dr. Gutkin who diagnosed orange skin dut to hypercarotenemia. whites of eyes do not get yellow so you can separate from liver disease. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2007 Report Share Posted June 17, 2007 In a message dated 6/15/07 1:45:45 PM, leslie@... writes: > > Actually, I usually drink my low sodium V-8 AND take the pills (60 meq > daily). My last set of labs (a few weeks ago) still showed my potassium in the > lower half of the normal range. I'm looking at the bottle right now and 8 ounces > is 820 mg of K and 140 of sodium. If I'm figuring things right, I'd need 3 > cups of low sodium V-8 daily to replace my current supplementation (which > translates to 420 mg of sodium). That figures out to about one 46 ounce bottle > every two days, times $4.50 per bottle = $67.50 per month. Could be worse, I > guess... I'll have to give that some thought. > > > > > The better way to conserve K is to lower diet Na as you know. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 Dear , I got what sounds like the exact same thing happen to my legs after gettiing a shot of Toradol and Phenergen in the ER for a migranine (I have daily chronic headache/transformed migraines as well as PA). It is the strangest feeling and one I do not want to have again -- no more toredol and phenergen again for me!! It was kinda funny being so doped up and wacky from the drugs but not being able to sit still!! The second time it actually kept me from sleep that night...Besides, all they do is knock me out for a couple of hours and then right back with the headaches... > >....Just curious... are you familiar with Restless Leg Syndrome? If so, would you consider your numbness and tingling to be RLS? The reason I ask is because I have leg problems that keep me from sleeping but I wouldn't call it numbness and tingling. It is difficult to describe, though... but it is definitely associated with the need to move my legs to get relief.... I take the potassium chloride pills and developed an esophageal ulcer. When I asked my internist about the potassium causing the ulcer, she said no, it wasn't. She also never mentioned switching me to the liquid form. > ....Another question - for those of you taking potassium, what form do you take it in? I've always taken potassium chloride pills but I've read that they can lead to ulcerations of the esophagus and stomach lining from sitting in one spot while they slowly release potassium. Is anyone taking another form, like liquid? If so, does it taste terrible? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 In a message dated 6/18/07 9:56:09 AM, cornerstone@... writes: > > Dear , > > I got what sounds like the exact same thing happen to my legs after > gettiing a shot of Toradol and Phenergen in the ER for a migranine (I > have daily chronic headache/transforme have daily chronic headache/tr > is the strangest feeling and one I do not want to have again -- no > more toredol and phenergen again for me!! It was kinda funny being so > doped up and wacky from the drugs but not being able to sit still!! > The second time it actually kept me from sleep that night...Besides, > all they do is knock me out for a couple of hours and then right back > with the headaches... > > > PA frequently associatied with migraine in MHE May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
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