Guest guest Posted May 4, 2012 Report Share Posted May 4, 2012 These sorts I'd discussions and answers are best handled by one on one consulting with me as they take considerable time to review and get u an understandable answer. My fee is $500 for 1 year unlimited access to my expertise by you and your medical care team. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 4, 2012, at 22:34, StaceyF <ssminnow@...> wrote: I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. fasting at 8am. DHEA-S 93.3 ug/dl (35-430)Normal Testosterone total 50.3 ng/dl (20-80)normal Testosterone free <.15 pg/dl(.04-2.03) normal 11 deoxycortisol 99 ng/dl (<=62) HIGH deoxycorticosterone- see attached report but did not get a report. 17-Hydroporgesterone- 53 ng/dl (<=285)normal Androstenedione- 202 ng/dl (47-268) normal My cortisol level was not checked at that time. It was checked at the time of saline infusion (done in February) and it was 10.6 ug/dl at 8am. I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 Fair enough. Not sure my team would be willing to listen but I will keep that in mind. May just go to U of M, that will be way more than your fee but they will be a better solution to my young endo who is grasping at straws. Stacey > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > fasting at 8am. > > DHEA-S 93.3 ug/dl (35-430)Normal > > Testosterone total 50.3 ng/dl (20-80)normal > > Testosterone free <.15 pg/dl(.04-2.03) normal > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > deoxycorticosterone- see attached report but did not get a report. > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > Androstenedione- 202 ng/dl (47-268) normal > > My cortisol level was not checked at that time. It was checked at the time of > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 Stacey, First I suggest you go here and print two copies: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057029/pdf/IJHT2011-624691.pdf Dr. Moraitis is my (and maggiekat7's) attending physician at NIH and this is the way they do it there. This is the current recommended approach. It really isn't rocket science but does require attention to detail. In response to your spironolactone question, you need to be off it a minimum of 4 weeks, they prefer 6 weeks (section 7). Table 4 (top of page 5) tells you what meds they prefer to control BP (I'm on Verapamil & Terazosin and BP was 139/75 this morning.) I don't remember your situation but if possible you might consider NIH, Protocol 00-CH-0160: http://clinicalstudies.info.nih.gov/detail/A_2000-CH-0160.html If they accept you into the study all the tests will be done and interpretted correctly and it will cost you only the transportation to get there - mine was ~$350. No matter how you go I am happy to encourage and support you any way I can, just email me. (Can't give medical advice, not licensed yet!) ..... > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > fasting at 8am. > DHEA-S 93.3 ug/dl (35-430)Normal > Testosterone total 50.3 ng/dl (20-80)normal > Testosterone free <.15 pg/dl(.04-2.03) normal > 11 deoxycortisol 99 ng/dl (<=62) HIGH > deoxycorticosterone- see attached report but did not get a report. > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > Androstenedione- 202 ng/dl (47-268) normal > My cortisol level was not checked at that time. It was checked at the time of > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 If you provide your " young endo " the second copy of Dr. Moraitis' review article it my be the only " straw " s/he needs! (I would provide it to them even if I decided to go to U of M - wouldn't hurt to have another educated doctor in this world, IMHO!) ..... > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > fasting at 8am. > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > Testosterone total 50.3 ng/dl (20-80)normal > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > deoxycorticosterone- see attached report but did not get a report. > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > Androstenedione- 202 ng/dl (47-268) normal > > > My cortisol level was not checked at that time. It was checked at the time of > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 I may be awake finally! A couple other items. If I observed any issues with your testosterone I would be looking at the " testosterone free " numbers. This may be a good example of what spironolctone does for you! (Suggest you read about it at: http://men.webmd.com/testosterone-15738 then you can draw your own conclusions!) Looking at your cortisol numbers I believe the doctors at NIH would tell you that Spironolactone is the absolute WRONG medicine for you to be on but I am not a doctor so you may want to get a professional opinion. (If they have any questions tell them to check how Spironolctone affects the CYP11B2 and CYP11B1 genes on Channel 8. I would be interested in their opinion!) Hope this helps, you know where I am if I can add anything. ..... > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > fasting at 8am. > > DHEA-S 93.3 ug/dl (35-430)Normal > > Testosterone total 50.3 ng/dl (20-80)normal > > Testosterone free <.15 pg/dl(.04-2.03) normal > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > deoxycorticosterone- see attached report but did not get a report. > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > Androstenedione- 202 ng/dl (47-268) normal > > My cortisol level was not checked at that time. It was checked at the time of > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 Thank you. I will go get those articles and read. I was just confused that she said my testosterone was high. Even the free is low. They said the spiro would help with that. Seems backward to me. I am considering NIH as I have been sick for 3 years but many of the things I have wrong or sxs are just not all the same as you guys have. I have heard of you all having headaches and it is grom low K but my K is now 4.4 with dash, spiro and 40 meq supplement and my headache that has been with me for 3.5 years is actually been worse. Them the lack of immune system that they say I have had all along, but my labs are showing a steep decline for the last 1.5 to 2 years. Then I also have the constant smell of smoke (phantosmia) which appears to make my head hurt worse when it is strong and my vision blurred. They just want to pick apart every symptom and call it a separate matter and treat only my sxs and forget the cause. I am rather sure that she will say come off the Spiro for 2 weeks. Never get to talk to her, just the med assistant who I know I have more knowledge than she on this. Doc also said I could just get MRI of abdomen instead if ACTH test and I told them I wanted both. Thanks for letting mevent. > > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > fasting at 8am. > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > Testosterone total 50.3 ng/dl (20-80)normal > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > deoxycorticosterone- see attached report but did not get a report. > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > Androstenedione- 202 ng/dl (47-268) normal > > > My cortisol level was not checked at that time. It was checked at the time of > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 Also this is my 5th endo. 1 local arrogant one, 1 said I had autonomic dysregulation and it would just go away, 1 at U of M and said that my PTH is high? No reason just some are like that and need more Vit D (mega dose) because I am over weight, 1 at Mayo that did more testing and said do not know why but lets keep an eye on it once a year, then this last one who has at the least gone further than the others. > > > > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > > fasting at 8am. > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > deoxycorticosterone- see attached report but did not get a report. > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > My cortisol level was not checked at that time. It was checked at the time of > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 I had the constant smell of smoke. It was related to calcium and vitamin d dysregulation I think. I will get it if my calcium levels get too high. I take Benicar now and I have now got the phantosmia in a while. I am in the process of being tested but I think I may have complications of Lyme disease or some other kind of intracellular bacteria infection. Phyllis On 5/5/2012 11:44 AM, StaceyF wrote: Thank you. I will go get those articles and read. I was just confused that she said my testosterone was high. Even the free is low. They said the spiro would help with that. Seems backward to me. I am considering NIH as I have been sick for 3 years but many of the things I have wrong or sxs are just not all the same as you guys have. I have heard of you all having headaches and it is grom low K but my K is now 4.4 with dash, spiro and 40 meq supplement and my headache that has been with me for 3.5 years is actually been worse. Them the lack of immune system that they say I have had all along, but my labs are showing a steep decline for the last 1.5 to 2 years. Then I also have the constant smell of smoke (phantosmia) which appears to make my head hurt worse when it is strong and my vision blurred. They just want to pick apart every symptom and call it a separate matter and treat only my sxs and forget the cause. I am rather sure that she will say come off the Spiro for 2 weeks. Never get to talk to her, just the med assistant who I know I have more knowledge than she on this. Doc also said I could just get MRI of abdomen instead if ACTH test and I told them I wanted both. Thanks for letting mevent. > > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > fasting at 8am. > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > Testosterone total 50.3 ng/dl (20-80)normal > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > deoxycorticosterone- see attached report but did not get a report. > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > Androstenedione- 202 ng/dl (47-268) normal > > > My cortisol level was not checked at that time. It was checked at the time of > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 We are not all that different, my K was 4.8 - 5.0 when I was DXed! (And I have had a headache since November!) I wouldn't waste my time with further testing of PA or cortisol unless I had been off spiro a minimum of 4 weeks and other meds that may affect it for 2 weeks. An MRI might be good but I would suggest aiming a little higher. Cortisol, testosterone, etc. issues can be triggered by the pituitary gland from what I understand. Finding an adrenal adenoma will mean nothing until they determine if it is functioning. Vent anytime - It's good for all of us! > > > > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > > fasting at 8am. > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > deoxycorticosterone- see attached report but did not get a report. > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > My cortisol level was not checked at that time. It was checked at the time of > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 I also have phantosmia, which started at the same time as the rest of my symptoms (high bp, low k, exhaustion). Mine comes and goes. My endo said the phantosmia wasn't related to PA. Seems odd that 3 of us have the same symptom. > > > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > > fasting at 8am. > > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > > deoxycorticosterone- see attached report but did not get a report. > > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > > My cortisol level was not checked at that time. It was checked > > at the time of > > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > > > I get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had to > > go ask the doctor. I can not find any info on a time frame anywhere > > either in regards to this test, just that it can raise cortisol. > > Anyone know? > > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone has > > any thoughts, I would appreciate them. > > > > > Labs also showing low ferritin and MCV low. Looks like need more > > iron. My WBC count has also been going down, 3 years ago was in the > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > can it all be from a cortisol issue? > > > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > (feel better, but not myself). sx started 3 years ago: brain fog, > > fatigue, pain in joints and muscles, exercise intolerence, light > > headed, palpitations and above mentioned. Diagnosed with > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > mg BID and BP is still labile. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 But we can teach him to care better for all the others he and the rest of your team have been missing.UofMich is the best spent a year there with Dr.Conn in 69-70On May 5, 2012, at 6:21 AM, StaceyF wrote: Fair enough. Not sure my team would be willing to listen but I will keep that in mind. May just go to U of M, that will be way more than your fee but they will be a better solution to my young endo who is grasping at straws. Stacey > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > fasting at 8am. > > DHEA-S 93.3 ug/dl (35-430)Normal > > Testosterone total 50.3 ng/dl (20-80)normal > > Testosterone free <.15 pg/dl(.04-2.03) normal > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > deoxycorticosterone- see attached report but did not get a report. > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > Androstenedione- 202 ng/dl (47-268) normal > > My cortisol level was not checked at that time. It was checked at the time of > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 Would also take my evolution article and concept which is not discussed in Dr. Ms review.CE Grim MDOn May 5, 2012, at 6:47 AM, wrote: If you provide your "young endo" the second copy of Dr. Moraitis' review article it my be the only "straw" s/he needs! (I would provide it to them even if I decided to go to U of M - wouldn't hurt to have another educated doctor in this world, IMHO!) .... > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > fasting at 8am. > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > Testosterone total 50.3 ng/dl (20-80)normal > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > deoxycorticosterone- see attached report but did not get a report. > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > Androstenedione- 202 ng/dl (47-268) normal > > > My cortisol level was not checked at that time. It was checked at the time of > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 Hmm How does spiro affect the CYP11B2 and CYP11B1 genes? CE Grim MD On May 5, 2012, at 9:25 AM, wrote: I may be awake finally! A couple other items. If I observed any issues with your testosterone I would be looking at the "testosterone free" numbers. This may be a good example of what spironolctone does for you! (Suggest you read about it at: http://men.webmd.com/testosterone-15738 then you can draw your own conclusions!) Looking at your cortisol numbers I believe the doctors at NIH would tell you that Spironolactone is the absolute WRONG medicine for you to be on but I am not a doctor so you may want to get a professional opinion. (If they have any questions tell them to check how Spironolctone affects the CYP11B2 and CYP11B1 genes on Channel 8. I would be interested in their opinion!) Hope this helps, you know where I am if I can add anything. .... > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > fasting at 8am. > > DHEA-S 93.3 ug/dl (35-430)Normal > > Testosterone total 50.3 ng/dl (20-80)normal > > Testosterone free <.15 pg/dl(.04-2.03) normal > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > deoxycorticosterone- see attached report but did not get a report. > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > Androstenedione- 202 ng/dl (47-268) normal > > My cortisol level was not checked at that time. It was checked at the time of > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 ACTH test would not be indicated at this time. IMHO.On May 5, 2012, at 10:44 AM, StaceyF wrote: Thank you. I will go get those articles and read. I was just confused that she said my testosterone was high. Even the free is low. They said the spiro would help with that. Seems backward to me. I am considering NIH as I have been sick for 3 years but many of the things I have wrong or sxs are just not all the same as you guys have. I have heard of you all having headaches and it is grom low K but my K is now 4.4 with dash, spiro and 40 meq supplement and my headache that has been with me for 3.5 years is actually been worse. Them the lack of immune system that they say I have had all along, but my labs are showing a steep decline for the last 1.5 to 2 years. Then I also have the constant smell of smoke (phantosmia) which appears to make my head hurt worse when it is strong and my vision blurred. They just want to pick apart every symptom and call it a separate matter and treat only my sxs and forget the cause. I am rather sure that she will say come off the Spiro for 2 weeks. Never get to talk to her, just the med assistant who I know I have more knowledge than she on this. Doc also said I could just get MRI of abdomen instead if ACTH test and I told them I wanted both. Thanks for letting mevent. > > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > fasting at 8am. > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > Testosterone total 50.3 ng/dl (20-80)normal > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > deoxycorticosterone- see attached report but did not get a report. > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > Androstenedione- 202 ng/dl (47-268) normal > > > My cortisol level was not checked at that time. It was checked at the time of > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 I sound like a money saver.CE Grim MDOn May 5, 2012, at 10:50 AM, StaceyF wrote: Also this is my 5th endo. 1 local arrogant one, 1 said I had autonomic dysregulation and it would just go away, 1 at U of M and said that my PTH is high? No reason just some are like that and need more Vit D (mega dose) because I am over weight, 1 at Mayo that did more testing and said do not know why but lets keep an eye on it once a year, then this last one who has at the least gone further than the others. > > > > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > > fasting at 8am. > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > deoxycorticosterone- see attached report but did not get a report. > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > My cortisol level was not checked at that time. It was checked at the time of > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 I have explained this to you probably a dozen times, you need to search on " CYP11B2 " and check some of those 172 hits you will get. I really don't see how you can question NIH's observation that Spironolactone was the wrong med for me w/o understanding this concept! In fact, if you don't inderstand how spiro is affecting cortosol I don't see how you can decide whether Spiro or Eplere is the approprite med to RX! > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > fasting at 8am. > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > deoxycorticosterone- see attached report but did not get a report. > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > My cortisol level was not checked at that time. It was checked > > at the time of > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > I get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had > > to go ask the doctor. I can not find any info on a time frame > > anywhere either in regards to this test, just that it can raise > > cortisol. Anyone know? > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone > > has any thoughts, I would appreciate them. > > > > Labs also showing low ferritin and MCV low. Looks like need more > > iron. My WBC count has also been going down, 3 years ago was in the > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > can it all be from a cortisol issue? > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > (feel better, but not myself). sx started 3 years ago: brain fog, > > fatigue, pain in joints and muscles, exercise intolerence, light > > headed, palpitations and above mentioned. Diagnosed with > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > mg BID and BP is still labile. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 I know ACEs have been associated with loss of taste and smell by dont know about ARBs.On May 5, 2012, at 11:09 AM, Phyllis wrote: I had the constant smell of smoke. It was related to calcium and vitamin d dysregulation I think. I will get it if my calcium levels get too high. I take Benicar now and I have now got the phantosmia in a while. I am in the process of being tested but I think I may have complications of Lyme disease or some other kind of intracellular bacteria infection. Phyllis On 5/5/2012 11:44 AM, StaceyF wrote: Thank you. I will go get those articles and read. I was just confused that she said my testosterone was high. Even the free is low. They said the spiro would help with that. Seems backward to me. I am considering NIH as I have been sick for 3 years but many of the things I have wrong or sxs are just not all the same as you guys have. I have heard of you all having headaches and it is grom low K but my K is now 4.4 with dash, spiro and 40 meq supplement and my headache that has been with me for 3.5 years is actually been worse. Them the lack of immune system that they say I have had all along, but my labs are showing a steep decline for the last 1.5 to 2 years. Then I also have the constant smell of smoke (phantosmia) which appears to make my head hurt worse when it is strong and my vision blurred. They just want to pick apart every symptom and call it a separate matter and treat only my sxs and forget the cause. I am rather sure that she will say come off the Spiro for 2 weeks. Never get to talk to her, just the med assistant who I know I have more knowledge than she on this. Doc also said I could just get MRI of abdomen instead if ACTH test and I told them I wanted both. Thanks for letting mevent. > > > > > > I went and had some labs done a few weeks ago because my aldo suppressed during the saline test. Here are the results I have. > > > fasting at 8am. > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > Testosterone total 50.3 ng/dl (20-80)normal > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > deoxycorticosterone- see attached report but did not get a report. > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > Androstenedione- 202 ng/dl (47-268) normal > > > My cortisol level was not checked at that time. It was checked at the time of > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > I get a call today by the medical assistant that the doctor would like me to get a ACTH stim test done to give her more information as to my high deoxycortisol test. Said I would have to come off the Spiro for the test, but did not know for how long. Had to go ask the doctor. I can not find any info on a time frame anywhere either in regards to this test, just that it can raise cortisol. Anyone know? > > > She also said that my testosterone was high normal, but from what I see it is right in the mid normal range. Any thoughts? > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one would expect a high ACTH and therefore the test would be dexa suppression, but I am new to all of this so not a clue. If anyone has any thoughts, I would appreciate them. > > > Labs also showing low ferritin and MCV low. Looks like need more iron. My WBC count has also been going down, 3 years ago was in the 10's now is 5.0. I am assuming this is from the immune disorder, but can it all be from a cortisol issue? > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with supplementation (feel better, but not myself). sx started 3 years ago: brain fog, fatigue, pain in joints and muscles, exercise intolerence, light headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 This is concerning to me because I read that phantosmia could be warning sign of a stroke to come. 5 months after I started getting phantosmia, I had a stroke. Maybe coincidence, I don't know. I also had uncontrolled HBP with a high salt diet at the time of my stroke. Phyllis On 5/5/2012 12:49 PM, jessdell72 wrote: I also have phantosmia, which started at the same time as the rest of my symptoms (high bp, low k, exhaustion). Mine comes and goes. My endo said the phantosmia wasn't related to PA. Seems odd that 3 of us have the same symptom. > > > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > > fasting at 8am. > > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > > deoxycorticosterone- see attached report but did not get a report. > > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > > My cortisol level was not checked at that time. It was checked > > at the time of > > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > > > I get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had to > > go ask the doctor. I can not find any info on a time frame anywhere > > either in regards to this test, just that it can raise cortisol. > > Anyone know? > > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone has > > any thoughts, I would appreciate them. > > > > > Labs also showing low ferritin and MCV low. Looks like need more > > iron. My WBC count has also been going down, 3 years ago was in the > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > can it all be from a cortisol issue? > > > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > (feel better, but not myself). sx started 3 years ago: brain fog, > > fatigue, pain in joints and muscles, exercise intolerence, light > > headed, palpitations and above mentioned. Diagnosed with > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > mg BID and BP is still labile. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 aldo causes high K in saliva and some complain of a metallic taste. If it does it in the saliva may also affect smell but no data. Another good reason we need a super database.CE Grim MDOn May 5, 2012, at 11:49 AM, jessdell72 wrote: I also have phantosmia, which started at the same time as the rest of my symptoms (high bp, low k, exhaustion). Mine comes and goes. My endo said the phantosmia wasn't related to PA. Seems odd that 3 of us have the same symptom. > > > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > > fasting at 8am. > > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > > deoxycorticosterone- see attached report but did not get a report. > > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > > My cortisol level was not checked at that time. It was checked > > at the time of > > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > > > I get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had to > > go ask the doctor. I can not find any info on a time frame anywhere > > either in regards to this test, just that it can raise cortisol. > > Anyone know? > > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone has > > any thoughts, I would appreciate them. > > > > > Labs also showing low ferritin and MCV low. Looks like need more > > iron. My WBC count has also been going down, 3 years ago was in the > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > can it all be from a cortisol issue? > > > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > (feel better, but not myself). sx started 3 years ago: brain fog, > > fatigue, pain in joints and muscles, exercise intolerence, light > > headed, palpitations and above mentioned. Diagnosed with > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > mg BID and BP is still labile. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 Even with this: 11 deoxycortisol 99 ng/dl (<=62) HIGH 11-Deoxycortisol (Compound S) is the immediate precursor of cortisol: 11 beta-hydroxylase 11-deoxycortisol--------------------------->cortisol and is typically increased when adrenocorticotropic hormone (ACTH) levels are increased (eg, Cushing disease, ACTH-producing tumors) or in 11 beta-hydroxylase deficiency, a rare subform of congenital adrenal hyperplasia (CAH). In CAH due to 11 beta-hydroxylase deficiency, cortisol levels are low, resulting in increased pituitary ACTH production and increased serum and urine 11-deoxycortisol levels. I stand by my original post unless you want to screw around with it a couple more years! …. > > > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > > fasting at 8am. > > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > > deoxycorticosterone- see attached report but did not get a > > report. > > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > > My cortisol level was not checked at that time. It was checked > > at the time of > > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > > > I get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had > > to go ask the doctor. I can not find any info on a time frame > > anywhere either in regards to this test, just that it can raise > > cortisol. Anyone know? > > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone > > has any thoughts, I would appreciate them. > > > > > Labs also showing low ferritin and MCV low. Looks like need > > more iron. My WBC count has also been going down, 3 years ago was in > > the 10's now is 5.0. I am assuming this is from the immune disorder, > > but can it all be from a cortisol issue? > > > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > (feel better, but not myself). sx started 3 years ago: brain fog, > > fatigue, pain in joints and muscles, exercise intolerence, light > > headed, palpitations and above mentioned. Diagnosed with > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > mg BID and BP is still labile. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 Yes I did search CYP11B2 and spironolactone and came up with nothing. If I understood the concept I would not be asking.did find this from Italy. Are you Italian?CE Grim MDJ Hypertens. 2011 Sep;29(9):1773-7.Concurrent primary aldosteronism and subclinical cortisol hypersecretion: a prospective study.Fallo F, Bertello C, Tizzani D, Fassina A, Boulkroun S, Sonino N, Monticone S, Viola A, Veglio F, Mulatero P.SourceDepartment of Medical and Surgical Sciences, University of Padova, Padova, Italy. francesco.fallo@...AbstractBACKGROUND:Primary aldosteronism is the most frequent cause of secondary hypertension and is responsible for an increased risk of cardiometabolic complications. A concomitant subtle cortisol hyperproduction could enhance cardiovascular risk. We prospectively estimated the occurrence of subclinical hypercortisolism in primary aldosteronism patients.METHODS:In a large population of hypertensive patients without clinical signs of hypercortisolism, 76 consecutive patients with primary aldosteronism were investigated. Differential diagnosis between unilateral and bilateral aldosterone hypersecretion was made by computed tomography/MRI and/or adrenal venous sampling (AVS). Subclinical hypercortisolism was defined as failure to suppress plasma cortisol to less than 50 nmol/l after 1 mg-overnight dexamethasone, used as screening test, and at least one of two other abnormal hormonal parameters, that is, adrenocorticotrophin (ACTH) less than 2 pmol/l and urinary cortisol more than 694 nmol/24 h.RESULTS:Three out of 76 patients had postdexamethasone plasma cortisol more than 50 nmol/l. Only one also showed low-normal ACTH and mildly elevated urinary cortisol. The patient had a right 4 cm adrenal mass. Laparoscopic adrenalectomy was followed by short-term steroid replacement to prevent adrenal insufficiency. In-situ hybridization showed CYP11B1 expression exclusively in tumoral tissue, whereas CYP11B2 was expressed only in a peritumoral region composed of zona glomerulosa-like cells, suggesting the co-existence of a cortisol-producing adenoma and an aldosterone-producing hyperplasia in the same adrenal. The restoration of hormone abnormalities to normal levels was confirmed at 12 months of follow-up.CONCLUSION:Concurrent aldosterone and subclinical cortisol hypersecretion seems to be a rare event in primary aldosteronism patients; however, its detection by appropriate testing is important to avoid AVS misinterpretation.CE Grim MDOn May 5, 2012, at 1:19 PM, wrote: I have explained this to you probably a dozen times, you need to search on "CYP11B2" and check some of those 172 hits you will get. I really don't see how you can question NIH's observation that Spironolactone was the wrong med for me w/o understanding this concept! In fact, if you don't inderstand how spiro is affecting cortosol I don't see how you can decide whether Spiro or Eplere is the approprite med to RX! > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > fasting at 8am. > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > deoxycorticosterone- see attached report but did not get a report. > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > My cortisol level was not checked at that time. It was checked > > at the time of > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > I get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had > > to go ask the doctor. I can not find any info on a time frame > > anywhere either in regards to this test, just that it can raise > > cortisol. Anyone know? > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone > > has any thoughts, I would appreciate them. > > > > Labs also showing low ferritin and MCV low. Looks like need more > > iron. My WBC count has also been going down, 3 years ago was in the > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > can it all be from a cortisol issue? > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > (feel better, but not myself). sx started 3 years ago: brain fog, > > fatigue, pain in joints and muscles, exercise intolerence, light > > headed, palpitations and above mentioned. Diagnosed with > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > mg BID and BP is still labile. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 Possible DASHING now would be my recommenation if not.CE GrimMDOn May 5, 2012, at 1:27 PM, Phyllis wrote: This is concerning to me because I read that phantosmia could be warning sign of a stroke to come. 5 months after I started getting phantosmia, I had a stroke. Maybe coincidence, I don't know. I also had uncontrolled HBP with a high salt diet at the time of my stroke. Phyllis On 5/5/2012 12:49 PM, jessdell72 wrote: I also have phantosmia, which started at the same time as the rest of my symptoms (high bp, low k, exhaustion). Mine comes and goes. My endo said the phantosmia wasn't related to PA. Seems odd that 3 of us have the same symptom. > > > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > > fasting at 8am. > > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > > deoxycorticosterone- see attached report but did not get a report. > > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > > My cortisol level was not checked at that time. It was checked > > at the time of > > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > > > I get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had to > > go ask the doctor. I can not find any info on a time frame anywhere > > either in regards to this test, just that it can raise cortisol. > > Anyone know? > > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone has > > any thoughts, I would appreciate them. > > > > > Labs also showing low ferritin and MCV low. Looks like need more > > iron. My WBC count has also been going down, 3 years ago was in the > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > can it all be from a cortisol issue? > > > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > (feel better, but not myself). sx started 3 years ago: brain fog, > > fatigue, pain in joints and muscles, exercise intolerence, light > > headed, palpitations and above mentioned. Diagnosed with > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > mg BID and BP is still labile. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 I frequently have the metal taste like medicine in my mouth. Phyllis On 5/5/2012 2:31 PM, Clarence Grim wrote: aldo causes high K in saliva and some complain of a metallic taste. If it does it in the saliva may also affect smell but no data. Another good reason we need a super database. CE Grim MD On May 5, 2012, at 11:49 AM, jessdell72 wrote: I also have phantosmia, which started at the same time as the rest of my symptoms (high bp, low k, exhaustion). Mine comes and goes. My endo said the phantosmia wasn't related to PA. Seems odd that 3 of us have the same symptom. > > > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > > fasting at 8am. > > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > > deoxycorticosterone- see attached report but did not get a report. > > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > > My cortisol level was not checked at that time. It was checked > > at the time of > > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > > > I get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had to > > go ask the doctor. I can not find any info on a time frame anywhere > > either in regards to this test, just that it can raise cortisol. > > Anyone know? > > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone has > > any thoughts, I would appreciate them. > > > > > Labs also showing low ferritin and MCV low. Looks like need more > > iron. My WBC count has also been going down, 3 years ago was in the > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > can it all be from a cortisol issue? > > > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > (feel better, but not myself). sx started 3 years ago: brain fog, > > fatigue, pain in joints and muscles, exercise intolerence, light > > headed, palpitations and above mentioned. Diagnosed with > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > mg BID and BP is still labile. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 Sounds like PA to me.CE Grim MDOn May 5, 2012, at 2:12 PM, Phyllis wrote: I frequently have the metal taste like medicine in my mouth. Phyllis On 5/5/2012 2:31 PM, Clarence Grim wrote: aldo causes high K in saliva and some complain of a metallic taste. If it does it in the saliva may also affect smell but no data. Another good reason we need a super database. CE Grim MD On May 5, 2012, at 11:49 AM, jessdell72 wrote: I also have phantosmia, which started at the same time as the rest of my symptoms (high bp, low k, exhaustion). Mine comes and goes. My endo said the phantosmia wasn't related to PA. Seems odd that 3 of us have the same symptom. > > > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > suppressed during the saline test. Here are the results I have. > > > > > fasting at 8am. > > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > > deoxycorticosterone- see attached report but did not get a report. > > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > > My cortisol level was not checked at that time. It was checked > > at the time of > > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > > > I get a call today by the medical assistant that the doctor > > would like me to get a ACTH stim test done to give her more > > information as to my high deoxycortisol test. Said I would have to > > come off the Spiro for the test, but did not know for how long. Had to > > go ask the doctor. I can not find any info on a time frame anywhere > > either in regards to this test, just that it can raise cortisol. > > Anyone know? > > > > > She also said that my testosterone was high normal, but from > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > would expect a high ACTH and therefore the test would be dexa > > suppression, but I am new to all of this so not a clue. If anyone has > > any thoughts, I would appreciate them. > > > > > Labs also showing low ferritin and MCV low. Looks like need more > > iron. My WBC count has also been going down, 3 years ago was in the > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > can it all be from a cortisol issue? > > > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > (feel better, but not myself). sx started 3 years ago: brain fog, > > fatigue, pain in joints and muscles, exercise intolerence, light > > headed, palpitations and above mentioned. Diagnosed with > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > mg BID and BP is still labile. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2012 Report Share Posted May 5, 2012 Also a sign of pituitary tumor along with vision changes and hormone alterations. Mine comes and goes too, but lately here more than not. Also it is in one nostril. I can plug my right and it is there, plug my left and the smell is gone. It even makes my throat hurt, like you want to cough because you are inhaling second hand smoke. No one smokes in my house, yet I feel like i am in a casino. > > > > > > > > > > > > > > I went and had some labs done a few weeks ago because my aldo > > > > suppressed during the saline test. Here are the results I have. > > > > > > > fasting at 8am. > > > > > > > DHEA-S 93.3 ug/dl (35-430)Normal > > > > > > > Testosterone total 50.3 ng/dl (20-80)normal > > > > > > > Testosterone free <.15 pg/dl(.04-2.03) normal > > > > > > > 11 deoxycortisol 99 ng/dl (<=62) HIGH > > > > > > > deoxycorticosterone- see attached report but did not get a > > report. > > > > > > > 17-Hydroporgesterone- 53 ng/dl (<=285)normal > > > > > > > Androstenedione- 202 ng/dl (47-268) normal > > > > > > > My cortisol level was not checked at that time. It was checked > > > > at the time of > > > > > > > saline infusion (done in February) and it was 10.6 ug/dl at 8am. > > > > > > > > > > > > > > I get a call today by the medical assistant that the doctor > > > > would like me to get a ACTH stim test done to give her more > > > > information as to my high deoxycortisol test. Said I would have to > > > > come off the Spiro for the test, but did not know for how long. > > Had to > > > > go ask the doctor. I can not find any info on a time frame anywhere > > > > either in regards to this test, just that it can raise cortisol. > > > > Anyone know? > > > > > > > She also said that my testosterone was high normal, but from > > > > what I see it is right in the mid normal range. Any thoughts? > > > > > > > > > > > > > > Lastly, from what I am reading with a high Deoxycortisol, one > > > > would expect a high ACTH and therefore the test would be dexa > > > > suppression, but I am new to all of this so not a clue. If anyone has > > > > any thoughts, I would appreciate them. > > > > > > > Labs also showing low ferritin and MCV low. Looks like need > > more > > > > iron. My WBC count has also been going down, 3 years ago was in the > > > > 10's now is 5.0. I am assuming this is from the immune disorder, but > > > > can it all be from a cortisol issue? > > > > > > > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > > > (feel better, but not myself). sx started 3 years ago: brain fog, > > > > fatigue, pain in joints and muscles, exercise intolerence, light > > > > headed, palpitations and above mentioned. Diagnosed with > > > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > > > mg BID and BP is still labile. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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