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Adrenal Gland Mass
I am hoping someone can help me here! I have been having serious issues with shortness of breath, fast heart rate, and stuff now for about 2 years.....I just found out today after having a CT of my chest that I have a 4.1cm well-circumsized low dense mass involving the left adrenal gland, and now I am freaking out. What does this mean?
Have you had any blood or urine tests? Is your blood pressure high?
Until they do testing, it is not possible to tell the nature of the lesion - usually adrenal masses mean something like Cushing's syndrome, pheochromocytoma, ...
They should run a bunch of testing. Let us know how that goes. Any symptoms like weight gain or loss, low or high blood pressure, stretch marks?
Until they do testing, it is not possible to tell the nature of the lesion - usually adrenal masses mean something like Cushing's syndrome, pheochromocytoma, ...
They should run a bunch of testing. Let us know how that goes. Any symptoms like weight gain or loss, low or high blood pressure, stretch marks?
I have been having a lot of problems with blood pressure as of late! It is the strangest thing because one minute it will be high and then the next it is extremely low! I went to the hospital 2x last week with chest pains, shortness of breath and just an overall feeling of not feeling well. I just recently had to start taking Anxiety medications in March becasue I feel like I can no longer handle stress the way I use to be able to. I am going for another scan with Adrenal Mass Protocol on Monday, but so far that is the only other testing I am going for....do you think this will have to be surgically removed? I don't like the idea of a surgery, but to me 4.1 cm seems large compared to what I have been reading, and I just want to feel better!
The BP thing could be related to the adrenal mass. Anxiety - makes me think more like Cushing's than pheo as I don't know if pheos cycle but I know Cushing's does.
I had both my adrenals removed at the same time. You can have it done laprascopically. Or however it is spelled... Just a few incisions and they can pop it out your side. It is not the most fun surgery (abdominal surgery in general takes longer to recover) but it is not bad. I have had 12 surgeries so far. It was not the worst. My adrenals were enlarged due to Cushing's.
Any blood or urine tests?
I had both my adrenals removed at the same time. You can have it done laprascopically. Or however it is spelled... Just a few incisions and they can pop it out your side. It is not the most fun surgery (abdominal surgery in general takes longer to recover) but it is not bad. I have had 12 surgeries so far. It was not the worst. My adrenals were enlarged due to Cushing's.
Any blood or urine tests?
No, no blood or urine tests yet, but I have a feeling that will be coming after I get this 2nd scan done!
They are more important than the scans - you already know about the lesion - know you need to know about the nature of the lesion. Let us know how it goes. With the urine jugs - keep them cold even if the lab stupidly tells you not too.
Well, I went for my 2nd scan today, and it was a terrible experience. First the receptionist gave me this stuff to drink, and said I had to wait 30 minutes. Then the tech came back to get me and said "I'm not going to make you drink anymore water", and I said "Water"?? The stuff I drank looked like orange juice, and she went up to the reception desk, and came back and said we should be ok.....It was freezing in the room, and she had me lay down on the bed to start an IV....well the first time the contrast dye leaked into my skin, not the vein, and you talk about pain....and now my wrist is swollen.....the 2nd time she tried in the other arm (upper), and same thing there! Finally she got another tech to come in and she did it right. However, during the scan I got very short of breath and it scared me really bad, and I told them about it. It was the weirdest thing.....also, I noticed that the paperwork said that some people with pheoceocrytoma are more sensitive to ct scans? Why is this? I have not been diagnosed with this, but I was just really curious why they would do scans on patients if they are more sensitive, and have pheo?
So I got the results of my scan back just now, and the nurse said it is adrenal adenoma, and I need to have it rescanned again in 4 months to make sure it is stable. However, I am not comfortable with that, because something is seriously wrong with me. I feel terrible, and my symptoms have been worsening for a while. I go to the Dr. on Monday to make sure my pneumonia is gone, and I plan on talking to her about this. I am just surprised that she does not want to do any urine or blood tests, and if she doesn't order any after I see her on Monday, I am going to look for an endocrinologist to take me. I want this tumor taken out because I know it's what is causing all my symptoms.
The scan is one thing - but I agree - they at least need to do a 24 hour cortisol, ACTH etc. and see if the adenoma is active. That whole watch and wait thing is... icky.
Well, here is what my scan results actually say, and I hope someone can help me interpret this....Enhanced images were obtained according to adrenal mass protocol. There is a clearly demarcated oval lesion in the left adrenal gland measuring approximately 4 cm in greatest diameter. Average density within the lesion measures approximately 10-11 Hounsfield units which is considered borderline for a high lipid adenoma (typically 10 Hounsfield units or less) Following administration of contrast images were obtained in addition to 10 minute delayed enhanced images. There is greater than 50 percent washout which also favors a benign adenoma. No other significant findings are noted.
Impression
1. 4 cm adrenal mass. Imaging characteristics favor a benign adenoma. Approximately 3-4 month followup is recommended to assess stability, However,
2. not mentioned in the body of the report is a small left renal cyst.
What does all of this mean?
Impression
1. 4 cm adrenal mass. Imaging characteristics favor a benign adenoma. Approximately 3-4 month followup is recommended to assess stability, However,
2. not mentioned in the body of the report is a small left renal cyst.
What does all of this mean?
It means it is not cancer - but they have NOT ruled out hormone secreting in my tiny little mind - that has to be done with testing. Please go find a neuro-endo in a pituitary center and get some testing under your belt.
So my Dr. did some more testing, and I am still waiting for most of the results....however, they did call yesterday to tell me that my aldosterone level is low, thyroid tests came back ok, but they are still waiting for the 24 hour urine results, and I guess that will determine the next step. My question is what does the aldosterone level being low have to do with the tumor on my left adrenal gland?
Hypoaldosteronism is not typical. Is your potassium and sodium normal? What was the 24 hour urine test for? Cortisol? So they are looking for Cushing's or Addison's. Finally.
If your Aldosterone is low, renin is low and cortisol is high - that points to Cushing's syndrome.
If your Aldosterone is low, renin is low and cortisol is high - that points to Cushing's syndrome.
Dr. called this morning and wants me to do another 24 hour urine, follow a low sodium diet for a couple of days and then come back to get another aldosterone level....stating that some people who follow High Sodium diets have a low aldosterone level....the Dr. was thinking that maybe I had a Pheocromocytoma, and that was the initial reason for the 24 hour urine, and she was checking for catacholamines. Here are my results of my 24 hour urine and blood work.
CAT UR CREAT MG/DL 68
CAT UR CREAT MG/DAY 1734 Normal range is 700-1600
Ephinephirne UG/G CRT <3 Normal is 0-20
Ephinieprine ug/g Day <3 Normal is 0-25
Norepinephrine UG/G CRT 32 Normal is 0-45
Norepi UG/Day 56 Normal is 0-100
Dopamine ug/CRT 176 Normal is 0-250
Dopamine UG/Day 306 Normal is 60-440
Volume of urine in 24 hour period was 2550
Aldosterone ng/dl was <1.6
T4 Total 6.9 Normal range is 4.5-10.9
T3 Total 0.93 Normal range is 0.60-1.81
TSH High Senstitivity 2.32 Normal range is 0.55-4.78
Does this help any at all?
CAT UR CREAT MG/DL 68
CAT UR CREAT MG/DAY 1734 Normal range is 700-1600
Ephinephirne UG/G CRT <3 Normal is 0-20
Ephinieprine ug/g Day <3 Normal is 0-25
Norepinephrine UG/G CRT 32 Normal is 0-45
Norepi UG/Day 56 Normal is 0-100
Dopamine ug/CRT 176 Normal is 0-250
Dopamine UG/Day 306 Normal is 60-440
Volume of urine in 24 hour period was 2550
Aldosterone ng/dl was <1.6
T4 Total 6.9 Normal range is 4.5-10.9
T3 Total 0.93 Normal range is 0.60-1.81
TSH High Senstitivity 2.32 Normal range is 0.55-4.78
Does this help any at all?
*Sigh* Your doc is looking for a pheo? What about cortisol? That could do the same thing and accounts for the ups and downs. Pheo would only be super duper high blood pressure.
Your tests look normal to me. He should look as well for Cushing's.
Your tests look normal to me. He should look as well for Cushing's.
They look normal? She was concerned about the Aldosterone level, and had me do another 24 hour urine, and then follow a low salt diet for 2 days, and then do another blood test tomorrow, so I don't know.
All but the aldosterone... sorry was not clear - that was abnormal before. I hope the doc tests renin too - they are normally tested together.
Yeah, it was....I just did not have the results in my hands, was only told it was low. I know today I went back for bloodwork, and the tech said they was testing Chem 8, and another aldosterone level. Let me ask you this.....if they know the mass is there, why is it so important to do all this testing? Seems to me they would just want to take it out, especially if it's causing me problems!
You would THINK that huh... but having had the surgery... they don't do any surgery unless there is a reason to take the puppy out. So they need to determine if [insert name here] is effecting you. Surgery has risks - infection, etc. and anesthesia is nothing to laugh at.
I carried Fred around for 12 years.
But I am like you - I want them out too...
I carried Fred around for 12 years.
But I am like you - I want them out too...
OK, I will do that! I have an appointment on Tuesday with primary Dr., and then one on Thursday with Cardiologist!
I've been following a couple of your posts because I recently found out that I have a 4.5 cm, lipid poor but well circumcised and homogeneous tumor on my left adrenal gland. This infor came after having a CT scan for abdominal pain--turns out it was an enlarged appendix which I've since had removed. But they didn't take delayed images at the time of the initial CT to check for wash out, because once the appendix was found enlarged, I was off to the hospital to have it removed.
Now all the work up on the adrenal adenoma begins.
I've had DHEA Sulfate, Aldosterone, Aldosterone /Renin ration, Metanephrines and Adrostenedoine come back as within normal range but I don't have copy of my results, or the lab/ranges.
The 24-hr urine cortisol test came back at 164.5 (lab range given as 10 to 80ugm/dl). I know lab ranges can be different, but upper limit seems to be 100ugm/dL. Would urine output be a factor? I think mine was 3500cc for 24 hours, I'm not sure if that was considered. And since I was three weeks post surgery, healing, limiting work, and hospital bills pouring in, I've been **stressed**. Can a measurement this high account for stress? Or any of these other things: I have gained weight, maybe 40lbs, but over 10 years, therefore I would be considered to be obese , and I might even be depressed now knowing I have this tumor. However, I don't exhibit any other cushings symptoms. (( I used to have panic attacks, I think were as a result of pvcs at 1200/hr. I've never had high BP, but after taking a beta blocker to control the pvcs, I hardly get pvcs, and I don't get panic attacks anymore either)).
I have just completed the dexamethasone suppression test today, but I don't know the results, until Monday or Tuesday.
I have been told I need an MRI to get baseline of adrenal tumor and then another in 6months to check stability. But if the tumor is secreting, shouldn't it come out regardless? They said they might do a fine needle biopsy. With lab normal except cortisol, I'm not sure why, I know it's lipid poor, but everything else points to benign.
pme47634, I know you haven't found out the function of the tumor yet, secreting or not, but I know from what I've read that a lipid rich tumor that has a 50% washout is almost certainly benign. I guess it would be nice to know that myself.
Sorry for the long post. Just wondering where to go from here. The results of the suppression test will point the way I guess. But I wanted to know from rumpled if you'd be willing to share any information since you seem to know an awful lot about this. I mean, how do they know I don't also have pituitary tumor involvement, they haven't done an ACTH lab. Would that be necessary given my other labs being normal? Geez i have so many questions.
Now all the work up on the adrenal adenoma begins.
I've had DHEA Sulfate, Aldosterone, Aldosterone /Renin ration, Metanephrines and Adrostenedoine come back as within normal range but I don't have copy of my results, or the lab/ranges.
The 24-hr urine cortisol test came back at 164.5 (lab range given as 10 to 80ugm/dl). I know lab ranges can be different, but upper limit seems to be 100ugm/dL. Would urine output be a factor? I think mine was 3500cc for 24 hours, I'm not sure if that was considered. And since I was three weeks post surgery, healing, limiting work, and hospital bills pouring in, I've been **stressed**. Can a measurement this high account for stress? Or any of these other things: I have gained weight, maybe 40lbs, but over 10 years, therefore I would be considered to be obese , and I might even be depressed now knowing I have this tumor. However, I don't exhibit any other cushings symptoms. (( I used to have panic attacks, I think were as a result of pvcs at 1200/hr. I've never had high BP, but after taking a beta blocker to control the pvcs, I hardly get pvcs, and I don't get panic attacks anymore either)).
I have just completed the dexamethasone suppression test today, but I don't know the results, until Monday or Tuesday.
I have been told I need an MRI to get baseline of adrenal tumor and then another in 6months to check stability. But if the tumor is secreting, shouldn't it come out regardless? They said they might do a fine needle biopsy. With lab normal except cortisol, I'm not sure why, I know it's lipid poor, but everything else points to benign.
pme47634, I know you haven't found out the function of the tumor yet, secreting or not, but I know from what I've read that a lipid rich tumor that has a 50% washout is almost certainly benign. I guess it would be nice to know that myself.
Sorry for the long post. Just wondering where to go from here. The results of the suppression test will point the way I guess. But I wanted to know from rumpled if you'd be willing to share any information since you seem to know an awful lot about this. I mean, how do they know I don't also have pituitary tumor involvement, they haven't done an ACTH lab. Would that be necessary given my other labs being normal? Geez i have so many questions.
I've been following a couple of your posts because I recently found out that I have a 4.5 cm, lipid poor but well circumcised and homogeneous tumor on my left adrenal gland. This infor came after having a CT scan for abdominal pain--turns out it was an enlarged appendix which I've since had removed. But they didn't take delayed images at the time of the initial CT to check for wash out, because once the appendix was found enlarged, I was off to the hospital to have it removed.
Now all the work up on the adrenal adenoma begins.
I've had DHEA Sulfate, Aldosterone, Aldosterone /Renin ration, Metanephrines and Adrostenedoine come back as within normal range but I don't have copy of my results, or the lab/ranges.
The 24-hr urine cortisol test came back at 164.5 (lab range given as 10 to 80ugm/dl). I know lab ranges can be different, but upper limit seems to be 100ugm/dL. Would urine output be a factor? I think mine was 3500cc for 24 hours, I'm not sure if that was considered. And since I was three weeks post surgery, healing, limiting work, and hospital bills pouring in, I've been **stressed**. Can a measurement this high account for stress? Or any of these other things: I have gained weight, maybe 40lbs, but over 10 years, therefore I would be considered to be obese , and I might even be depressed now knowing I have this tumor. However, I don't exhibit any other cushings symptoms. (( I used to have panic attacks, I think were as a result of pvcs at 1200/hr. I've never had high BP, but after taking a beta blocker to control the pvcs, I hardly get pvcs, and I don't get panic attacks anymore either)).
I have just completed the dexamethasone suppression test today, but I don't know the results, until Monday or Tuesday.
I have been told I need an MRI to get baseline of adrenal tumor and then another in 6months to check stability. But if the tumor is secreting, shouldn't it come out regardless? They said they might do a fine needle biopsy. With lab normal except cortisol, I'm not sure why, I know it's lipid poor, but everything else points to benign.
pme47634, I know you haven't found out the function of the tumor yet, secreting or not, but I know from what I've read that a lipid rich tumor that has a 50% washout is almost certainly benign. I guess it would be nice to know that myself.
Sorry for the long post. Just wondering where to go from here. The results of the suppression test will point the way I guess. But I wanted to know from rumpled if you'd be willing to share any information since you seem to know an awful lot about this. I mean, how do they know I don't also have pituitary tumor involvement, they haven't done an ACTH lab. Would that be necessary given my other labs being normal? Geez i have so many questions.
Now all the work up on the adrenal adenoma begins.
I've had DHEA Sulfate, Aldosterone, Aldosterone /Renin ration, Metanephrines and Adrostenedoine come back as within normal range but I don't have copy of my results, or the lab/ranges.
The 24-hr urine cortisol test came back at 164.5 (lab range given as 10 to 80ugm/dl). I know lab ranges can be different, but upper limit seems to be 100ugm/dL. Would urine output be a factor? I think mine was 3500cc for 24 hours, I'm not sure if that was considered. And since I was three weeks post surgery, healing, limiting work, and hospital bills pouring in, I've been **stressed**. Can a measurement this high account for stress? Or any of these other things: I have gained weight, maybe 40lbs, but over 10 years, therefore I would be considered to be obese , and I might even be depressed now knowing I have this tumor. However, I don't exhibit any other cushings symptoms. (( I used to have panic attacks, I think were as a result of pvcs at 1200/hr. I've never had high BP, but after taking a beta blocker to control the pvcs, I hardly get pvcs, and I don't get panic attacks anymore either)).
I have just completed the dexamethasone suppression test today, but I don't know the results, until Monday or Tuesday.
I have been told I need an MRI to get baseline of adrenal tumor and then another in 6months to check stability. But if the tumor is secreting, shouldn't it come out regardless? They said they might do a fine needle biopsy. With lab normal except cortisol, I'm not sure why, I know it's lipid poor, but everything else points to benign.
pme47634, I know you haven't found out the function of the tumor yet, secreting or not, but I know from what I've read that a lipid rich tumor that has a 50% washout is almost certainly benign. I guess it would be nice to know that myself.
Sorry for the long post. Just wondering where to go from here. The results of the suppression test will point the way I guess. But I wanted to know from rumpled if you'd be willing to share any information since you seem to know an awful lot about this. I mean, how do they know I don't also have pituitary tumor involvement, they haven't done an ACTH lab. Would that be necessary given my other labs being normal? Geez i have so many questions.
I have met people with Cushing's that gained hardly any weight but you have gained 40lbs. You are having depression - another symptoms BTW, I had Cushing's and had low BP. It is possible and entirely likely you have it with the UFC so high - stress does not last like that.
The high output should be looked at for an ADH issue. How is your potassium and sodium as well?
As for doing ACTH, yes it is necessary as cortisol and ACTH are in the same feedback loop and it is entirely possible for a pituitary lesion to cause an adrenal tumor, but an adrenal tumor cannot cause a pituitary one - so you need to find the cause of the imbalance - ie the source of the problem so the proper surgery is done. You don't want to remove the adrenal and still have Cushing's. Seen it happen. Just knowing that your doc only ordered one test (and a very unreliable one at that) means he is not knowing how to test or treat this disease - try to find someone else - find a pituitary center so you can get more comprehensive testing. Also, get a copy of your testing.
The high output should be looked at for an ADH issue. How is your potassium and sodium as well?
As for doing ACTH, yes it is necessary as cortisol and ACTH are in the same feedback loop and it is entirely possible for a pituitary lesion to cause an adrenal tumor, but an adrenal tumor cannot cause a pituitary one - so you need to find the cause of the imbalance - ie the source of the problem so the proper surgery is done. You don't want to remove the adrenal and still have Cushing's. Seen it happen. Just knowing that your doc only ordered one test (and a very unreliable one at that) means he is not knowing how to test or treat this disease - try to find someone else - find a pituitary center so you can get more comprehensive testing. Also, get a copy of your testing.
1 Comments
Hi
I'm 36 female
I've got a 3.6 adrenal tumor on my right side and second opinion from encro suggested it be taken out! I've got high cortisol and having fertility issues and anxiety
I'm so scared of the op and more scared of what's going to happen after op. They won't be sure if my remaining tumor will wake up straight away so probably need meds! I was told I'd only be in over night. So send me home and how about if meds are not enough or to much and I drop dead! I've also heard people getting depressed after surgery muscle pain dizziness ect I've got a 6 year old boy who needs looking after I'm scared
I've googled way to much and am wondering if I should even go through with it
Any advice or experience please thanks in advance
I'm 36 female
I've got a 3.6 adrenal tumor on my right side and second opinion from encro suggested it be taken out! I've got high cortisol and having fertility issues and anxiety
I'm so scared of the op and more scared of what's going to happen after op. They won't be sure if my remaining tumor will wake up straight away so probably need meds! I was told I'd only be in over night. So send me home and how about if meds are not enough or to much and I drop dead! I've also heard people getting depressed after surgery muscle pain dizziness ect I've got a 6 year old boy who needs looking after I'm scared
I've googled way to much and am wondering if I should even go through with it
Any advice or experience please thanks in advance
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