Aa
Surgery
So I wanted to update everyone on the latest! I went to see the nephrologist today, and he is sending me to IU hospital in Indianapolis for surgery! I have an appointment on the 31st of this month to consult with the surgeon. Her name is Judiann Miskulin. From what I can find on her, she is a critical care surgeon who specializes in Endocrinology. The Dr. was shocked that nothing had been scheduled yet, and said "your tumor is HUGE" and it has to come out! After leaving there I felt so nervous about it all, because I feel like I still dont' have a diagnosis, and I am being thrown into surgery. I just don't know what to expect from here, and this makes me very uncomfortable. The endo that my heart Dr. referred me to scheduled me for March 24, and I was able to find another endo who was willing to see me on Feb 9th, but then today I went to this Dr. whom my primary Dr. referred me to, and he already has me seeing a surgeon in INDY. I am just like really scared. Should they just jump into surgery like this without knowing if the tumor is secreting or not?
I hope that your test comes back within normal range.
From everything I've read in medical journals regarding adrenal tumors, and from everything you've posted regarding your own results, to monitor is the best recommendation.
If your tumor is non-functioning (not secreting independently), and is stable in terms of growth (it might even shrink, that's been recorded as happening in some cases), you can afford to wait and see.
I posted some of my own, new, results, in a different thread, and it looks like my tumor is secreting excess cortisol. Although, when it comes to reference ranges, its not outrageously excessive.
I'll keep you posted. Thanks for sharing your own experience, it helps me greatly.
From everything I've read in medical journals regarding adrenal tumors, and from everything you've posted regarding your own results, to monitor is the best recommendation.
If your tumor is non-functioning (not secreting independently), and is stable in terms of growth (it might even shrink, that's been recorded as happening in some cases), you can afford to wait and see.
I posted some of my own, new, results, in a different thread, and it looks like my tumor is secreting excess cortisol. Although, when it comes to reference ranges, its not outrageously excessive.
I'll keep you posted. Thanks for sharing your own experience, it helps me greatly.
Well, I am doing another 24 hour urine tomorrow, so I will let you know how that goes. I seen Dr. on Friday, and he said if this test comes back ok, we will just sit on things for 6 months and do another CT scan at that time!
if any needs information on adrenal gland and tumor being removed. I just had surgery six wkd ago. Rose
Thanks upbeat! I will keep you updated! Good luck with all your results, and please keep me posted on how it goes.
I think all the news you've had is great! I'm not sure why you are frustrated?? Especially in light of the fact that your blood pressure has gone down without medication. Hooray.
130/90 is a touch high, but at this point most doctors would recommend lifestyle changes to try to bring it down further, not medication. That should be good news.
It will be interesting to know the further test your local endo wants to order. Does he still have a suspicion about something? I'm not sure what it would be. You've had this mass imaged several times, and you've had so many blood draws you must feel like a pin cushion. I can only think repeat lab tests to confirm the original findings would put everyone at ease.
As I recall from your previous posts, one of the things you've been trying to resolve is chest pain. Is that correct? Does this relate to the pain you have in your back? Since all the testing from a cardiologist to a nephrologist to two endos can't explain it, I just wondered if you had ever thought of seeing a chiropractor. Just wondered it if could be related to old fashioned joint pain from spine and ribs. Worth investigating I would think since you've tried all the other specialists, why not try this one.
And finally, to update you, since we kinda have the same thing going on, tumor wise. I did two midnight salivary swabs this week, results to come. And I've just done an ACTH test this morning. With that done, I will begin my 48hr dexamethasone now followed by another 24 hr urine Free Cortisol. I hope my results are as good as yours. I would love to know that the mass is stable and not secreting much of anything.
Thanks for your update. Please let me know what is next for you. Hope your blood pressure stays right where it is, or better yet, that it goes even lower, now that you have some of this behind you.
130/90 is a touch high, but at this point most doctors would recommend lifestyle changes to try to bring it down further, not medication. That should be good news.
It will be interesting to know the further test your local endo wants to order. Does he still have a suspicion about something? I'm not sure what it would be. You've had this mass imaged several times, and you've had so many blood draws you must feel like a pin cushion. I can only think repeat lab tests to confirm the original findings would put everyone at ease.
As I recall from your previous posts, one of the things you've been trying to resolve is chest pain. Is that correct? Does this relate to the pain you have in your back? Since all the testing from a cardiologist to a nephrologist to two endos can't explain it, I just wondered if you had ever thought of seeing a chiropractor. Just wondered it if could be related to old fashioned joint pain from spine and ribs. Worth investigating I would think since you've tried all the other specialists, why not try this one.
And finally, to update you, since we kinda have the same thing going on, tumor wise. I did two midnight salivary swabs this week, results to come. And I've just done an ACTH test this morning. With that done, I will begin my 48hr dexamethasone now followed by another 24 hr urine Free Cortisol. I hope my results are as good as yours. I would love to know that the mass is stable and not secreting much of anything.
Thanks for your update. Please let me know what is next for you. Hope your blood pressure stays right where it is, or better yet, that it goes even lower, now that you have some of this behind you.
Well, I got another CT scan done of the 9th of March, and the Dr. called me with results a few days ago. Remember, I had this scan done at a different facility, so the measurements are a bit different on this one for some reason. However, it is still close to the 4cm that it was on the original scan I had completed. Here is what the report says:
"Liver, spleen and pancreas are normal. No renal stones or obstruction. Hypodensity anteriorly in the left kidney measuring 2.5 c.m. May be a cyst. There ia a 3.8 x 2.8 cm hypodense mass on left adrenal glad. Statistacally this would be adenoma. I do not have any prior studies to compare. No free fluid or adenopathy. Pelvis not imaged. No acute abdominal findings.
The order was done without contrast, and when the Dr. called me, he told me that the cyst had not grown in size, but he wanted to do one more test. In the meantime, the Dr. from Indianapolis finally called me back to let me know that my lab values for adrenaline were on the higher range of normal, but not enough to indicate a pheo or malignancy. She did tell me that there would be nothing more that would need to be done, and if I would feel better to have the adrenal gland taken out, then let her office know.
My blood pressure has been doing very well, and I have not even been taking any blood pressure medication as of late. I check it frequently throughout the day, and a couple of times it has been like 130/90, but no higher than that without the medication. I know it is probably not a good idea not to take the medicine, but that was something I decided to do on my own.
I have been having sharp shooting pains in my back area near my kidney, and I wonder if that is not due to the cyst. The cyst was noted on the last CT scan done in November, but the size was not noted. I seen a nephrologist in January, and he did not seem concerned about it to much.
I am still waiting to hear back from the endo to find out about this other test he wants to run, but I am growing more frustrated by the day.
"Liver, spleen and pancreas are normal. No renal stones or obstruction. Hypodensity anteriorly in the left kidney measuring 2.5 c.m. May be a cyst. There ia a 3.8 x 2.8 cm hypodense mass on left adrenal glad. Statistacally this would be adenoma. I do not have any prior studies to compare. No free fluid or adenopathy. Pelvis not imaged. No acute abdominal findings.
The order was done without contrast, and when the Dr. called me, he told me that the cyst had not grown in size, but he wanted to do one more test. In the meantime, the Dr. from Indianapolis finally called me back to let me know that my lab values for adrenaline were on the higher range of normal, but not enough to indicate a pheo or malignancy. She did tell me that there would be nothing more that would need to be done, and if I would feel better to have the adrenal gland taken out, then let her office know.
My blood pressure has been doing very well, and I have not even been taking any blood pressure medication as of late. I check it frequently throughout the day, and a couple of times it has been like 130/90, but no higher than that without the medication. I know it is probably not a good idea not to take the medicine, but that was something I decided to do on my own.
I have been having sharp shooting pains in my back area near my kidney, and I wonder if that is not due to the cyst. The cyst was noted on the last CT scan done in November, but the size was not noted. I seen a nephrologist in January, and he did not seem concerned about it to much.
I am still waiting to hear back from the endo to find out about this other test he wants to run, but I am growing more frustrated by the day.
Hope you are doing better. Did your heart rate go down yet?
Have you had the additional CT for your adrenal gland yet? I was wondering what they discovered from that.
Have you had the additional CT for your adrenal gland yet? I was wondering what they discovered from that.
I think the lab range they gave you for cortisol is *regardless* of whether you've taken dexamethasone or not. It's just the range.
They draw your serum and measure cortisol to see if you are within the range (no dexamethasone).
If you've taken dexamethasone, it's still the same range, they just look to see if you are below the range--if you've "suppressed".
In your case, 2.3 is below the range you were given. But if you've read many of the posts that rumpled has written, lots of people can suppress, but may still have a problem. It's maddening that it can't be 100% for sure one way or the other. Although my endo says if you are at or below 1.4 then it's 100% sure. Other places I've read 1.8. Geez.
Is your endo going to do the adrenal protocol CT again? Check for wash-out? Again, I've read that protocol is supposed to be pretty sensitive, but like I said above nothing appears to be 100% sure.
I think short of a needle biopsy, they won't be able to tell 100% for sure whether it's benign or malignant. Or as rumpled has said, they could remove it, send it to pathology and you'd have your answer.
However, I'd like to keep as many of my organs as I can and the thought of removing something that isn't causing a problem just doesn't seem right. As easy as they like to make it sound, it's still surgery.
Surgery still has risk, and more people die of secondary infection or complications than I care to think about. I'd like to avoid that if I can, but I'll proceed if they can find a problem.
I don't think they've found a problem with your tumor. Yet.
Still, it is your choice.
And I still wonder, without an identifiable problem, would you feel better after surgery, or would you still have all the same symptoms you are suffering from now. Just wondering.
They draw your serum and measure cortisol to see if you are within the range (no dexamethasone).
If you've taken dexamethasone, it's still the same range, they just look to see if you are below the range--if you've "suppressed".
In your case, 2.3 is below the range you were given. But if you've read many of the posts that rumpled has written, lots of people can suppress, but may still have a problem. It's maddening that it can't be 100% for sure one way or the other. Although my endo says if you are at or below 1.4 then it's 100% sure. Other places I've read 1.8. Geez.
Is your endo going to do the adrenal protocol CT again? Check for wash-out? Again, I've read that protocol is supposed to be pretty sensitive, but like I said above nothing appears to be 100% sure.
I think short of a needle biopsy, they won't be able to tell 100% for sure whether it's benign or malignant. Or as rumpled has said, they could remove it, send it to pathology and you'd have your answer.
However, I'd like to keep as many of my organs as I can and the thought of removing something that isn't causing a problem just doesn't seem right. As easy as they like to make it sound, it's still surgery.
Surgery still has risk, and more people die of secondary infection or complications than I care to think about. I'd like to avoid that if I can, but I'll proceed if they can find a problem.
I don't think they've found a problem with your tumor. Yet.
Still, it is your choice.
And I still wonder, without an identifiable problem, would you feel better after surgery, or would you still have all the same symptoms you are suffering from now. Just wondering.
I just found out, that the range I posted for my cortisol is for someone who had not taken the dexamethasone, and I did take it, I can't find out specifics for what the range is for someone who did. As for the CT scan, he is just checking to see if it is growing, but my endo has not ruled out cancer at this point even though the CT suggest benign.
I hope rumpled can respond soon and explain "cycling". I'm not sure if that is relevant to your situation or not.
Will you be getting the CT done at the same center as the previous two you've had? My doctor feels there could be some error (although slight) in measurement when more than one radiologist is reading/interpreting the study. I'm not sure how that can be determined, or how much impact it has, but if it's all done at the same place that should reduce the chance of reader error.
Also, I thought it was determined from your second CT that your adrenal tumor was benign. I've read the wash-out protocol that you had is very sensitive for determining this.
Is your local endo just checking to see if it is growing? I wouldn't have thought three months between CTs to compare would be that long, unless these tumors can grow quickly.
I just don't know enough about adrenal tumors to know how quickly they grow. BUT I don't think the endo(s) know either!!!! Adrenal tumors are only now being "discovered" so to speak, because people are having more CT(s) for other things, and ooops, did you know you have an adrenal tumor!
So I don't think most doctors know enough about them, and we have to rely on the doctors for our information! Or like you and I are doing, asking as many questions as we can of people who have some personal experiences.
Sorry to hear about your fast heart rate. That must be very uncomfortable.
Just out of curiosity, I wonder if any of the doctors (cardiologist included) ever questioned or looked at the relationship of the position of the adrenal tumor to your heart? I'll have to look up some anatomy to see how close they are. Just wondered if the tumor might cause some physical contact irritation to the heart muscle??????????
Will you be getting the CT done at the same center as the previous two you've had? My doctor feels there could be some error (although slight) in measurement when more than one radiologist is reading/interpreting the study. I'm not sure how that can be determined, or how much impact it has, but if it's all done at the same place that should reduce the chance of reader error.
Also, I thought it was determined from your second CT that your adrenal tumor was benign. I've read the wash-out protocol that you had is very sensitive for determining this.
Is your local endo just checking to see if it is growing? I wouldn't have thought three months between CTs to compare would be that long, unless these tumors can grow quickly.
I just don't know enough about adrenal tumors to know how quickly they grow. BUT I don't think the endo(s) know either!!!! Adrenal tumors are only now being "discovered" so to speak, because people are having more CT(s) for other things, and ooops, did you know you have an adrenal tumor!
So I don't think most doctors know enough about them, and we have to rely on the doctors for our information! Or like you and I are doing, asking as many questions as we can of people who have some personal experiences.
Sorry to hear about your fast heart rate. That must be very uncomfortable.
Just out of curiosity, I wonder if any of the doctors (cardiologist included) ever questioned or looked at the relationship of the position of the adrenal tumor to your heart? I'll have to look up some anatomy to see how close they are. Just wondered if the tumor might cause some physical contact irritation to the heart muscle??????????
Thanks upbeat! I have had my thyroid checked, and it is normal according to blood work done in the past. I have not had the MRI done to check pituatary yet, but when I spoke to my endo on the phone last night, he is wanting another CT scan done within a week. My blood pressure has been doing better, but my heart rate has increased since being taken off the Labetelol. It has been about 130, and that is pretty high, and it just feels like it is all over the place.
Really looks like you are in the same boat as I am in. Big old tumor on our adrenal gland(s), 4cm+, and our tests really don't show with 100% certainty what it is doing, if anything is going on at all.
Glad you finally had the cortisol tests done at a time when they would be more diagnostic (8am and 11pm). your results would suggest that cortisol is within the "normal" ranges and follows the normal diurnal pattern (higher in morning and lowest at night).
That seems good, seems like your adrenal tumor isn't secreting excess cortisol. But the dexamethasone test might be considered borderline. I suppressed below the normal reference range like you did, but I've been told by my endocrinologist that it wasn't good enough to rule out cushings, that to rule out cushings, to be absolutely sure, I would have to suppress near 1.4.
Rumpled has highlighted that even with "passing" the tests, you could be cycling. Which I guess means going through highs and lows. I'm not sure when you would experience the highs and lows or what changes it, maybe time? Rumpled could better explain that.
I found some information on sex hormone binding globulin (SHBG), I hope it helps.............
""Conditions with low SHBG include polycystic ovary syndrome, diabetes, and hypothyroidism. Conditions with high SHBG include pregnancy, hyperthyroidism, and anorexia nervosa"""
Have you had your thyroid checked? Did you have the MRI to check pituitary? Has your blood pressure stabilized? So Many questions!! Hope you are feeling better.
Glad you finally had the cortisol tests done at a time when they would be more diagnostic (8am and 11pm). your results would suggest that cortisol is within the "normal" ranges and follows the normal diurnal pattern (higher in morning and lowest at night).
That seems good, seems like your adrenal tumor isn't secreting excess cortisol. But the dexamethasone test might be considered borderline. I suppressed below the normal reference range like you did, but I've been told by my endocrinologist that it wasn't good enough to rule out cushings, that to rule out cushings, to be absolutely sure, I would have to suppress near 1.4.
Rumpled has highlighted that even with "passing" the tests, you could be cycling. Which I guess means going through highs and lows. I'm not sure when you would experience the highs and lows or what changes it, maybe time? Rumpled could better explain that.
I found some information on sex hormone binding globulin (SHBG), I hope it helps.............
""Conditions with low SHBG include polycystic ovary syndrome, diabetes, and hypothyroidism. Conditions with high SHBG include pregnancy, hyperthyroidism, and anorexia nervosa"""
Have you had your thyroid checked? Did you have the MRI to check pituitary? Has your blood pressure stabilized? So Many questions!! Hope you are feeling better.
So I just got my lab results back from the Dr. and I wanted to put them here to see if anyone can help me decipher them. I spoke to my Dr. lastnight on the phone, and he just said my labs looked OK, but did not go into any detail. So I did the saliva samples (2 of them at 11 p.m. 2 nights in a row, and then went the next day and had a cortisol blood level drawn). I also had a DHEA, HYSDROXYPROGEST-17, and a testerone panel. Here are the results.
Cortisol,Saliva
Feb 9 @11 P.M- 0.043 This was processed from ARUP LAB
Feb 10th @ 11pm- 0.081
It says for collection at 2300 hr. the normal cortisol concentration is less than 0.112. Patients with Cushings Syndrome have concentration of 0.112 or greater.
Cortisol-AM Done at 8 am after taking dexamethason at 11 pm night before
2.3 (range is 8.7-22.4)
DHEA Sulfate
39 (range is 45-270)
I also had a testosterone panel done, and all of those were normal except for a test called Sex Hormone BND GLOB and it was 25 and reference range was 30-135.
Can anyone help me figure this out?
Cortisol,Saliva
Feb 9 @11 P.M- 0.043 This was processed from ARUP LAB
Feb 10th @ 11pm- 0.081
It says for collection at 2300 hr. the normal cortisol concentration is less than 0.112. Patients with Cushings Syndrome have concentration of 0.112 or greater.
Cortisol-AM Done at 8 am after taking dexamethason at 11 pm night before
2.3 (range is 8.7-22.4)
DHEA Sulfate
39 (range is 45-270)
I also had a testosterone panel done, and all of those were normal except for a test called Sex Hormone BND GLOB and it was 25 and reference range was 30-135.
Can anyone help me figure this out?
By expert I mean someone that does a lot of diagnosing of adrenal and pituitary issues.
In your case, you are probably fine though... just keep it in your mind in case something comes up later.
In your case, you are probably fine though... just keep it in your mind in case something comes up later.
By expert, do you mean some other doctor besides an endocrinologist? It is the endo who ordered the ACTH test, after I insisted that I wanted to investigate pituitary involvement. But that is as far as she would go. (that and the two 11pm salivary swabs for cortisol, and the 48hr dex followed by 24hr UFC).
Do you think there are some things I would notice if I had pituitary involvement? I've read lots of people get visual disturbances and/or headaches. And if it's causing increased secretion there are a lot of other symptoms too.
I know in your case you kept going back and pushing your doctors because you knew something was wrong. It's different for me. I don't have many complaints, and if I do have any, they are very mild and pass.. If I hadn't had the CT for my appendix, I wouldn't know I had an adrenal tumor, and I would not have guessed I had high cortisol.
Again, your thoughts are appreciated.
Do you think there are some things I would notice if I had pituitary involvement? I've read lots of people get visual disturbances and/or headaches. And if it's causing increased secretion there are a lot of other symptoms too.
I know in your case you kept going back and pushing your doctors because you knew something was wrong. It's different for me. I don't have many complaints, and if I do have any, they are very mild and pass.. If I hadn't had the CT for my appendix, I wouldn't know I had an adrenal tumor, and I would not have guessed I had high cortisol.
Again, your thoughts are appreciated.
That test alone is not definitive - after all I had all normal ACTH tests and I had pituitary source Cushing's. There is some art to this diagnosis... it pays to see an expert.
Thanks. I'll take the ACTH as a stand-alone test and see if the results have any significance in the big picture.
If I am high cortisol due to the adrenal tumor secreting, I "should" be low to normal ACTH.
If ACTH is high, that increases the suspicion of pituitary involvement.
I just have to have a basic understanding before taking the tests, so that I know how much weight to give them, whether to trust them enough to make a decision on surgery or not.
If I am high cortisol due to the adrenal tumor secreting, I "should" be low to normal ACTH.
If ACTH is high, that increases the suspicion of pituitary involvement.
I just have to have a basic understanding before taking the tests, so that I know how much weight to give them, whether to trust them enough to make a decision on surgery or not.
If you have high estrogen, you will have usually lower free cortisol testing as the estrogen binds free cortisol.
ACTH is not supposed to be effected by dex - so when you test, the doc switches you to dex for that reason. Dex shows up in some tests but not others. If you did it after the dex test as directed, it was probably to see what was going on.
I found this:
"
ACTH tests were performed with and without dexamethasone (dex) pretreatment to clarify the nature of the relationship between the absolute and incremental response (delta) to ACTH in normal men and women, hirsute women, adrenarchal children, and women heterozygous for congenital adrenal hyperplasia (CAH). The purposes were to test the effect of dex preparation on adrenal responsiveness to ACTH and the efficacy of the dex-pretreated ACTH test in detecting heterozygosity for CAH. Cosyntropin was given as a 10 micrograms/m2 iv bolus dose at 0800-1000 h; dex (1 mg/m2) was given at 2200-2400 h the night before. Dex did not alter the absolute plasma steroid levels achieved in response to ACTH. However, since post-dex baseline concentrations of adrenal steroids were lower, the delta to ACTH was significantly greater for the major adrenal secretory products, 17 alpha-hydroxypregnenolone (3 beta, 17 alpha-dihydroxypregn-5-ene-20-one), dehydroepiandrosterone, and cortisol (F). For example, for all paired tests, the mean plasma F values achieved 30 min post-ACTH were 26.0 +/- 4.4 (+/- SD) micrograms/dl without dex and 23.8 +/- 5.5 micrograms/dl after dex. In contrast, the mean delta of plasma F 30 min post-ACTH was less without (13.3 +/- 4.8 micrograms/dl) than after (19.4 +/- 3.3 micrograms/dl) dex (P less than 0.001). Apparent 21-hydroxylase efficiency, computed from dex-prepared tests, was found in follicular phase women to have a markedly skewed distribution without clear demarcation between 15% of the population and CAH heterozygotes. Luteal phase responses differed from follicular phase responses in dex-pretreated women in the magnitude of the 17-hydroxyprogesterone response. In the luteal phase, although the plasma 17-hydroxyprogesterone level at 30 min was higher, a response to ACTH was not consistently found, averaging only 22 +/- 26 ng/dl, in contrast to the consistent 52 +/- 15 ng/dl response in the follicular phase. These findings have practical implications for interpreting rapid ACTH test results. The absolute plasma F level achieved post-ACTH is more important as an index of adrenocortical reserve than the increment. Dex pretreatment appears to offer no practical advantage in ACTH testing for mild defects in 21-hydroxylation; we postulate that this is because of considerable normal variability in the efficiency of 21-hydroxylation."
That is for CAH but a lot of the testing is the same.
ACTH is not supposed to be effected by dex - so when you test, the doc switches you to dex for that reason. Dex shows up in some tests but not others. If you did it after the dex test as directed, it was probably to see what was going on.
I found this:
"
ACTH tests were performed with and without dexamethasone (dex) pretreatment to clarify the nature of the relationship between the absolute and incremental response (delta) to ACTH in normal men and women, hirsute women, adrenarchal children, and women heterozygous for congenital adrenal hyperplasia (CAH). The purposes were to test the effect of dex preparation on adrenal responsiveness to ACTH and the efficacy of the dex-pretreated ACTH test in detecting heterozygosity for CAH. Cosyntropin was given as a 10 micrograms/m2 iv bolus dose at 0800-1000 h; dex (1 mg/m2) was given at 2200-2400 h the night before. Dex did not alter the absolute plasma steroid levels achieved in response to ACTH. However, since post-dex baseline concentrations of adrenal steroids were lower, the delta to ACTH was significantly greater for the major adrenal secretory products, 17 alpha-hydroxypregnenolone (3 beta, 17 alpha-dihydroxypregn-5-ene-20-one), dehydroepiandrosterone, and cortisol (F). For example, for all paired tests, the mean plasma F values achieved 30 min post-ACTH were 26.0 +/- 4.4 (+/- SD) micrograms/dl without dex and 23.8 +/- 5.5 micrograms/dl after dex. In contrast, the mean delta of plasma F 30 min post-ACTH was less without (13.3 +/- 4.8 micrograms/dl) than after (19.4 +/- 3.3 micrograms/dl) dex (P less than 0.001). Apparent 21-hydroxylase efficiency, computed from dex-prepared tests, was found in follicular phase women to have a markedly skewed distribution without clear demarcation between 15% of the population and CAH heterozygotes. Luteal phase responses differed from follicular phase responses in dex-pretreated women in the magnitude of the 17-hydroxyprogesterone response. In the luteal phase, although the plasma 17-hydroxyprogesterone level at 30 min was higher, a response to ACTH was not consistently found, averaging only 22 +/- 26 ng/dl, in contrast to the consistent 52 +/- 15 ng/dl response in the follicular phase. These findings have practical implications for interpreting rapid ACTH test results. The absolute plasma F level achieved post-ACTH is more important as an index of adrenocortical reserve than the increment. Dex pretreatment appears to offer no practical advantage in ACTH testing for mild defects in 21-hydroxylation; we postulate that this is because of considerable normal variability in the efficiency of 21-hydroxylation."
That is for CAH but a lot of the testing is the same.
How have you been?
Just wondering if your blood pressure has been ok since you've stopped the lobetalol. I know you had a couple of funky days up and down, and even your heart rate was up. Hope you've been able to manage and hope the other BP med the endo recommended is helping.
Hang in there. You're getting closer to the answers you need.
Just wondering if your blood pressure has been ok since you've stopped the lobetalol. I know you had a couple of funky days up and down, and even your heart rate was up. Hope you've been able to manage and hope the other BP med the endo recommended is helping.
Hang in there. You're getting closer to the answers you need.
When you say that estrogen binds with cortisol, does that mean that the body makes more cortisol in an attempt to have enough?
I have high estrogen, will that mean I will possibly have high cortisol?
And, if you could also please, let me know your opinion about getting/taking the ACTH test on the morning following the 48hr dexamethasone test. Will measuring ACTH at that point provide good information on whether there is pituitary involvement driving high cortisol? Or is it better to have ACTH before dexamethasone, as a stand-alone test.
Thanks so much, you have a lot of great information to share.
I have high estrogen, will that mean I will possibly have high cortisol?
And, if you could also please, let me know your opinion about getting/taking the ACTH test on the morning following the 48hr dexamethasone test. Will measuring ACTH at that point provide good information on whether there is pituitary involvement driving high cortisol? Or is it better to have ACTH before dexamethasone, as a stand-alone test.
Thanks so much, you have a lot of great information to share.
I took that dex test too - I know people that did not suppress on that test but if you are a borderline case (like me - I was a cyclical pituitary case) - I just did do well with any test involving dex.
Has any doc done a CBG on you? Your own estrogen (as well as medications) can bind free cortisol. Your body has to then reach a higher serum level to spill over to free for you to even register so your tests will be off. It does not have to just be estrogen - it can be other meds like pain and other types. I too had a like of gyne issues like fibroids, endometriosis and cysts and things - so my tests were all over and it was very hard for me to get a read on it until that one doc explained it.
I am unaware of progesterone being a precursor to cortisol. That I do not know. I know they used to test for 17-hydroxysteroid which is a cortisol precursor to cortisol. But that could be a deficiency in what I know - but I was googling around and there are derivatives of a progestrone -like in some papers but I am not sure if they are the same, but I was not ever tested for them in so far as for cortisol purposes. 17-OHS was a test used for a while but deemed not useful enough but some docs use it still in conjunction with other tests.
As for the other tests, more is better. (to me!)
Has any doc done a CBG on you? Your own estrogen (as well as medications) can bind free cortisol. Your body has to then reach a higher serum level to spill over to free for you to even register so your tests will be off. It does not have to just be estrogen - it can be other meds like pain and other types. I too had a like of gyne issues like fibroids, endometriosis and cysts and things - so my tests were all over and it was very hard for me to get a read on it until that one doc explained it.
I am unaware of progesterone being a precursor to cortisol. That I do not know. I know they used to test for 17-hydroxysteroid which is a cortisol precursor to cortisol. But that could be a deficiency in what I know - but I was googling around and there are derivatives of a progestrone -like in some papers but I am not sure if they are the same, but I was not ever tested for them in so far as for cortisol purposes. 17-OHS was a test used for a while but deemed not useful enough but some docs use it still in conjunction with other tests.
As for the other tests, more is better. (to me!)
Labatelol IS a blocking agent.
Blocking agents work to block "receptor" sites on cells, they do not work to block production of substances like hormones, catecholamines or neurotransmittors.
Blocking agents fill or compete for the receptor sites on tissue cells so those substances (hormones, neurotransmittors etc) cannot attach there.
In that way, those substances cannot affect the tissue, ie, since the substance can't attach because it is being blocked from attaching, the substance won't affect the cell the way it normally would have, example if it has an affinity for heart cells and it can't attach there, it can't increase your heart rate. Take the blocking agent away, and the substance again begins to attach, causing the affect, like increased blood pressure or increased heart rate.
The substance itself was never affected, therefore the amount of it was never changed.
Labatelol is used to block the action of catecholamines. It attaches to the sites where catecholamines would normally attach. Catecholamines are norepinephrine and adrenaline ETC, . not cortisol.
I've read many endocrine journals looking for information on adrenal masses since I discovered I have one myself and I have not read any information about them producing pain. One journal had the story of a 60+ y.o woman who started having her period again and it was finally discovered she had an 18 cm tumor causing excess production of estrogen! 18cm, imagine that!
Anyhow, reading is not real life experience, rumpled might have more information about whether adrenal tumors can cause pain, but I have not come across that yet.
Take comfort in the fact the labatelol was not blocking production of the catecholamines (or cortisol), so your lab tests aren't compromised in that way, and you can at least trust them to the extent they were done at the right times and done by the lab correctly (ACTCH).
Blocking agents work to block "receptor" sites on cells, they do not work to block production of substances like hormones, catecholamines or neurotransmittors.
Blocking agents fill or compete for the receptor sites on tissue cells so those substances (hormones, neurotransmittors etc) cannot attach there.
In that way, those substances cannot affect the tissue, ie, since the substance can't attach because it is being blocked from attaching, the substance won't affect the cell the way it normally would have, example if it has an affinity for heart cells and it can't attach there, it can't increase your heart rate. Take the blocking agent away, and the substance again begins to attach, causing the affect, like increased blood pressure or increased heart rate.
The substance itself was never affected, therefore the amount of it was never changed.
Labatelol is used to block the action of catecholamines. It attaches to the sites where catecholamines would normally attach. Catecholamines are norepinephrine and adrenaline ETC, . not cortisol.
I've read many endocrine journals looking for information on adrenal masses since I discovered I have one myself and I have not read any information about them producing pain. One journal had the story of a 60+ y.o woman who started having her period again and it was finally discovered she had an 18 cm tumor causing excess production of estrogen! 18cm, imagine that!
Anyhow, reading is not real life experience, rumpled might have more information about whether adrenal tumors can cause pain, but I have not come across that yet.
Take comfort in the fact the labatelol was not blocking production of the catecholamines (or cortisol), so your lab tests aren't compromised in that way, and you can at least trust them to the extent they were done at the right times and done by the lab correctly (ACTCH).
From what I understand, the medication that I was on (Labatelol) was working as a blocking agent to prevent me from being able to get a high cortisol test! When I took that test in Indy, I was on Labatelol, so I don't know! I am just going to wait and see what this endo recommends. Something else i have noticed the last few days is a dull, constant aching pain in my upper back on the left side, and it is very tender in that area! I don't know if the tumor is growing possibly, but it does not hurt bad, just very uncomfortable. I went back to endo today to get my BP checked and it was 135/83 and the endo told me to take 1/2 of the lisontopril instead of a whole one. I will start that again in the morning....currently my bp is 144/91 and HR is 104, so I am beginning to notice that I have not had my bp meds for several days.
oops, I meant to say dexamethasone, 0.5mg every 6 hours for 48 hrs followed by a 24 hr UFC.
What is your opinion on that test.
Is that more sensitive or reliable than the low dose test with lab draw next morning?
Also, could you please provide your opinion to this question: if I am going to do an ACTH test to help determine cause (adrenal vs pituitary), would it be best to do the ACTH test the 3rd day, that is the morning following the 48 hours of dexamethasone, when I begin the 24 hr UFC?
ACTH should be very low after dexamethsone, shouldn't it. That would help rule out a pit tumor wouldn't it? If it were normal or high that would point toward an ecotopic or adrenal problem right?
And finally, would it do me any good at all to know TSH, estrogen or progesterone levels? I know cortisol can increase when there is extra estrogen present, therefore most doctors recommend discontinuing HRT or birth control pills so estrogen doesn't interfere with the cortisol test. But what if you are estrogen dominant--as in I have a fruit bowl of fibroids and I suspect that is driven by too much estrogen. Would estrogen dominance, a hormone imbalance, skew the cortisol higher? Or could it be, that since progesterone is a precursor to cortisol, I'm using that up my progesterone making cortisol and by default I'm estrogen dominant. I guess that could happen, but which is it, that's kind of like answering what came first the chicken or the egg.
It's so hard to stay on top of all of this, especially when you think you should be able to rely on the doctors knowledge. Too bad that isn't always the case.
What is your opinion on that test.
Is that more sensitive or reliable than the low dose test with lab draw next morning?
Also, could you please provide your opinion to this question: if I am going to do an ACTH test to help determine cause (adrenal vs pituitary), would it be best to do the ACTH test the 3rd day, that is the morning following the 48 hours of dexamethasone, when I begin the 24 hr UFC?
ACTH should be very low after dexamethsone, shouldn't it. That would help rule out a pit tumor wouldn't it? If it were normal or high that would point toward an ecotopic or adrenal problem right?
And finally, would it do me any good at all to know TSH, estrogen or progesterone levels? I know cortisol can increase when there is extra estrogen present, therefore most doctors recommend discontinuing HRT or birth control pills so estrogen doesn't interfere with the cortisol test. But what if you are estrogen dominant--as in I have a fruit bowl of fibroids and I suspect that is driven by too much estrogen. Would estrogen dominance, a hormone imbalance, skew the cortisol higher? Or could it be, that since progesterone is a precursor to cortisol, I'm using that up my progesterone making cortisol and by default I'm estrogen dominant. I guess that could happen, but which is it, that's kind of like answering what came first the chicken or the egg.
It's so hard to stay on top of all of this, especially when you think you should be able to rely on the doctors knowledge. Too bad that isn't always the case.
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