Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
My Doctor Dr. Ezzat at Toronto Western, in Toronto (Head of the Pituitary Network Association of North America), wants to do an ACTH Stimulation Test.
What is this test? I am overwhelmed. Feb 22, I was supposed to meet with him at 11:30 AM and he would be giving further advice on his 'one-two punch method' of getting second surgery, and then Gamma Knife.
He was to be testing my tumor pathology since Oct/11, which was already completed at another facility, he wasnt too impressed with, and my results were limited due to tumor 'degenerative qualities'. However, it stained for GH. IE My Acrogemagly Etc... He however suspected Prolactin Secretion, which my Nurse stated she said he wanted to further test for... He has his suspicions.
So is an ACTH Stimulation Test... (Old Trusty Wikipedia)
The ACTH stimulation test (also called the cosyntropin test, tetracosactide test or Synacthen test) is a medical test usually ordered and interpreted by endocrinologists to assess the functioning of the adrenal glands stress response by measuring the adrenal response to adrenocorticotropic hormone (ACTH).[1][2] ACTH is a hormone produced in the pituitary gland that stimulates the adrenal glands to release cortisol.[2]
During the test, a small amount of synthetic ACTH is injected, and the amount of cortisol, and sometimes aldosterone, the adrenals produce in response is measured.[3] This test may cause mild to moderate side effects in some individuals.[4][5]
This test is used to diagnose or exclude primary and secondary adrenal insufficiency, Addison's disease and related conditions.[2] In addition to quantifying adrenal insufficiency, the test can distinguish whether the cause is adrenal (low cortisol and aldosterone production) or pituitary (low ACTH production).[1] The ACTH stimulation test is recognized as the gold standard assay of adrenal insufficiency, although this test is primarily used to determine the presence of Addison's disease and pituitary impairment.[6] If the test does not show Addison's, the test interpreter may see it as showing the adrenal glands are working, not recognizing any degree of adrenal insufficiency between Addison's (the worst degree of adrenal insufficiency) and healthy adrenal function.[citation needed] The test is extremely sensitive (97% at 95% specificity) to primary adrenal insufficiency, but less so to secondary adrenal insufficiency (57-61% at 95% specificity); while secondary adrenal insufficiency may thus be dismissed by some interpreters on the basis of the test, additional testing may be called for if probability of secondary adrenal insufficiency is particularly high.[1]
So... My question is... He is just probably ruling out any sufficient adrenal insufficiency. However, ACTH Cortisol levels they (My Endo in my City, and their results my Edno at Toronto Western didn't seem too concerned at the time)....
Could this have something to do with Pathology results that they have found? They are an EXTREMELY hard staff to commuincate, they never answer phones, emails are rude and blunt and non-explanatory.
I am so confused. I am angry, and I feel like want to cry. I am sick already with cold, constapated from weeks now I suspect is a secondary side effect from the Sandostatin... So I am having to take "Ex Lax" every week. To keep regular and non bloated.
Wesley
What is this test? I am overwhelmed. Feb 22, I was supposed to meet with him at 11:30 AM and he would be giving further advice on his 'one-two punch method' of getting second surgery, and then Gamma Knife.
He was to be testing my tumor pathology since Oct/11, which was already completed at another facility, he wasnt too impressed with, and my results were limited due to tumor 'degenerative qualities'. However, it stained for GH. IE My Acrogemagly Etc... He however suspected Prolactin Secretion, which my Nurse stated she said he wanted to further test for... He has his suspicions.
So is an ACTH Stimulation Test... (Old Trusty Wikipedia)
The ACTH stimulation test (also called the cosyntropin test, tetracosactide test or Synacthen test) is a medical test usually ordered and interpreted by endocrinologists to assess the functioning of the adrenal glands stress response by measuring the adrenal response to adrenocorticotropic hormone (ACTH).[1][2] ACTH is a hormone produced in the pituitary gland that stimulates the adrenal glands to release cortisol.[2]
During the test, a small amount of synthetic ACTH is injected, and the amount of cortisol, and sometimes aldosterone, the adrenals produce in response is measured.[3] This test may cause mild to moderate side effects in some individuals.[4][5]
This test is used to diagnose or exclude primary and secondary adrenal insufficiency, Addison's disease and related conditions.[2] In addition to quantifying adrenal insufficiency, the test can distinguish whether the cause is adrenal (low cortisol and aldosterone production) or pituitary (low ACTH production).[1] The ACTH stimulation test is recognized as the gold standard assay of adrenal insufficiency, although this test is primarily used to determine the presence of Addison's disease and pituitary impairment.[6] If the test does not show Addison's, the test interpreter may see it as showing the adrenal glands are working, not recognizing any degree of adrenal insufficiency between Addison's (the worst degree of adrenal insufficiency) and healthy adrenal function.[citation needed] The test is extremely sensitive (97% at 95% specificity) to primary adrenal insufficiency, but less so to secondary adrenal insufficiency (57-61% at 95% specificity); while secondary adrenal insufficiency may thus be dismissed by some interpreters on the basis of the test, additional testing may be called for if probability of secondary adrenal insufficiency is particularly high.[1]
So... My question is... He is just probably ruling out any sufficient adrenal insufficiency. However, ACTH Cortisol levels they (My Endo in my City, and their results my Edno at Toronto Western didn't seem too concerned at the time)....
Could this have something to do with Pathology results that they have found? They are an EXTREMELY hard staff to commuincate, they never answer phones, emails are rude and blunt and non-explanatory.
I am so confused. I am angry, and I feel like want to cry. I am sick already with cold, constapated from weeks now I suspect is a secondary side effect from the Sandostatin... So I am having to take "Ex Lax" every week. To keep regular and non bloated.
Wesley
I had to do this test once. It's no big deal, but can be a really good indicator of how your adrenals are functioning - as you seemed to have gathered from your research ;) My memory is extremely bad and spotty right now, but I recall them not even telling me what this test was. I did blood work - they used a butterfly IV - and left it in. I hung out, read a book and then 30 minutes later they took more blood and that was it! The weird thing is, when I was reviewing my blood tests online last week from 3 mos ago, I noticed my ACTH was higher than the norm range and was in red letters - eek. Though, none of my drs mentioned it for some reason... I'm going in for a 6 mos followup post op tomorrow, and I know we will be doing more blood work - and maybe this test then too.
As for it's connection to your tumor pathology, I doubt it is related. However, he might suspect you are symptomatic of one of the other diseases that is caused by the tumor such as Addison's Disease, Cushings or something else to just make sure he can rule them out. When was the last time you had blood work done?
I honestly wouldn't be too frightened. Remember, sometimes tests mean more answers, sometimes they lead to more questions but ultimately having answers is good! It's so much worse not knowing why things are happening right?
Let us all know how things go, and walk us through the test process.
Best to you!
Lauren
Warm - If the results of your test were in the red and highlighted in red letter and an abnormal high, probably suggests your ACTH Test was Good! Because I have information that if your results are doubled beyond a certain measure of increased Cortisol production than normal through the adrenals, then that means their functioning within normal ranges. So maybe thats why they didn't say anything about it.
I am certain your 6 mons post follow up will go well. It's so crazy, that Acromegliacs have to wait so incredibly long for follow ups to something that seems to be changing all the time in our bodies! It's so frustrating is it not?
Phobemarie,
It makes me feel alot better that this test is administered to alot posters here and your daughter. Where is she at her testing now at this time in stage, she is lucky to have you as her mother to be her cheerleader and being so informed about a disease as a monster as Acromegaly.
Here is some of my test results, which were converted into ug/dl units, as which the ACTH Test required to interprit. Now mind you, things such as Testosterone (Androgel Packets) and Predneszone WILL simulate and raise Cortisol in the body! So these are my results, just at base minimum for Addison and Sufficient Adrenal Insssufficiency WITH Other Stimulants.
Funny thing IS.... My Endo Nurse, under Dr. Ezzat, DIDNT EVEN KNOW I was taking Androgel when she made the req's for this test yesterday through an email. I had to inform her... In underline... "I AM taking ANDROGELS should I stop now, will it be in time, for my ACTH Test Results NOT to be Skewered?!" ..... I didn't say in such terms, but I am angry they didn't even tell me this.
Interpretation for primary adrenal insufficiency and Addison's disease
The baseline cortisol level in people with adrenal insufficiency is usually near 15 ug/dl. An ACTH stimulation test that raises the cortisol concentration to 20 ug/dl would support the diagnosis of primary adrenal insufficiency. In Addison's disease, baseline cortisol is well below 10 ug/dl and rises no more than 25 percent.
Cortisol:317 nmol/L x 0.036 = 11.41 ug/dL
Jul 27, 2011
With 15 MG Daily Testosterone Androgen
5 MG Prednisone
Cortisol: 369 nmol/L x 0.036 = 13.28 ug/dL
Oct 26, 2011
With 22.5 MG Daily Testosterone Androgen
No Prednisone
The most common symptoms are fatigue, lightheadedness upon standing or while upright, muscle weakness, fever, weight loss, difficulty in standing up, anxiety, nausea, vomiting, diarrhea, headache, sweating, changes in mood and personality, and joint and muscle pains. Some have marked cravings for salt or salty foods due to the urinary losses of sodium.[1]
Funny thing, except for the diharrea, I've been experiencing ALL of these symptoms ongoing... Even after taking Sandostatin 8 mons now, and I thought it was "just" having to live with Acromegaly.
I dunno. I got too much time on my hands! Hahaha
This totally makes sense. To respond to your response, I spoke to a different dr. today who saw some of my blood tests already coming back in and my ACTH is now low from the blood tests so she ordered a CST for tomorrow and wants me to get in to see her ASAP next week. Is this the same kind of test you are doing? She explained this could be causing my nausea too.
lots of love! lolo
I am glad that I could have helped, that's what we're all here for ;0)
My Psychologist today stated she has seen ACTH Tests done at the Hospital, and Androgel generally isn't something to be worried about. So that helped ease me. I am well, thank you. *Huggles Back @ Yah*
oh, and i told them i fasted - they said i didn't need to :P
i made another very interesting discovery as i received more lab numbers today from a nurse. i am quite shocked that this has gone undiscussed... but i think i have completely figured out what is going on with me...im going to write a separate post about my "findings" :P so read on if you want wes.
have a nice saturday!
Wow! I know what you mean about an IV being placed harshly! It seems since I have incredibly hard veins to get hold of, their literally holding my forearm down and DRIVING the pick up my vein! Talk about excrutiating!
I am glad to hear that your Test went well! That sounds like it wasnt that bad at all! So any stimulation like watching TV is ok? What If I listen to classical music on my Ipod, which was I was thinking to calm myself... I get so antsy "White Coat Syndrome", at times my blood pressure jumps, just cause 'i know' its being tested. So wow, yours was .5 I am in shock! You must have been so relieved in a way, I mean that can be the answer to so many of your symptoms lately. The mood swings, excessive tiredness, wanting to cry out of nowheres, sore muscles... That is what I have been experiencing for months now... I was fine about first two months after they took me off of hydrocortisone after my Surgery... But the last 3 months, like we've been both explaing... Emotional Turmoil!
Was it out of the ordinary for you to have that somewhat emotional breakdown after the test, the way you explain it that you wanted to start crying etc?
Ironically Feb 28th is my emergency hospitalization date from 2011. I have been going through cartwheels... of where I was, where I have come, and how that date changed my life... I've been balling out of nowheres...
This sounds bad, but I hope I have ACTH level like you, or somewheres near it, because I was begging my Endo to go back on Hydrocortisone a month back... He said then I was borderline.
I'm sorry for rambling, its just I am happy for you, and I UNDERSTAND you! LOL. Too bad your so far in Seattle from Toronto. Best of Luck, and keep me updated!
Wes
I totally understand you. It SUCKS you've had to wait until the 22nd. I guess the "new" endo thought it was really important for me to do the stim test ASAP so she rushed me in before the weekend.
No, not normal for me to cry for no reason. Yes. I did have somewhat of a breakdown after the test. My friend that took me and I went to have sushi afterwards (honestly, a rare treat since I never feel well enough to do this).
You poor thing... I feel bad you've been crying so much. This whole thing is such an emotional roller coaster. I realized my acro levels are now going up again too... explains a lot.
Don't feel weird about wanting your ACTH to be .5! It gives you answers! So then you can be fixed... if they are normal, then what the heck is going on, seriously.
I'll be sending good vibes your way ;)
You definately needed medical attention, it is no wonder they didn't recognize this sooner, especially if you were already seeing an Endo post op! You are very lucky to have such a team set up with the Mayo Clinic in Minnesota. I had a Friend who worked at the Mayo as a Nurse in Phoenix. Mind blowing place!
Hahaha... Please, I am ok. I don't mean to sound too cry baby ish... But it, we all know, you especially how rough it can be. And your levels are IGF? Are increasing... Your what two months now post op and on 20 MG Sando? They may raise you to 30 MG the full dose I'm on and even then, it's still not lowering to "acceptable" levels. Mid 500s.
I appreciate your thoughts, and like anything in life we give and take. Sounds like you won one today! Good Job.
Wes