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
Sorry if you misunderstood... my GH levels are out of norm already (I had surgery 8/12/11, 6 mos ago) and an MRI in nov showing no tumor residue. All normals were fine (was on hydrocortisone but was taken off of it then because my levels were normal then). Then things went WAY downhill. Since I live in Seattle, and I'm going through so much everyday, I have had to build a team of drs here over the last month so I can get some good help (it's taken years to find them) but I think I found my new endo - they will report stuff back to mayo, etc.
Anyway, my new blood tests indicate my GH skyrocketed out of my normal zone, and, my IGF is trending up again as well... so we are thinking the tumor is back. :(
I'm not taking any sandostatin or anything like that yet - this week on Wednesday I will find out my ACTH stim test results, and taking HC in the meantime as well as oxycodone for pain. At my appt, I will find out more, and probably do ANOTHER mri to see if my tumor is already back only 6 mos after surgery. I mean, I'm tough -I can handle it, I just need to know what the heck is going on. I am having serious acro symptoms and I don't care if I was told I was "cured", things change.
I'm really hoping I can find enough literature for my psychiatrist on methylphenidate so that she will be willing to prescribe it for me. I KNOW it will be the right thing.
I brought some med journal article in for my Endo and then my Psychiatrist, and she said she was thinking of placing me on it, but she doesnt want to make those bigger changes to my anti depressants until after my second surgery.
My Psychiatrist is taking my file and creating a report to the area Psychiatrists and then presenting it in Toronto with others in her association, highlighting awareness of Acromegaly and the Psycho Social effects it has on us pre- and post op... She is amazing, I've known her since I was 18 with depression.
I'm having issues relaying that I get pain in my joints, ankles, lower back to my other doctors, they feel my ankle and since it doesnt feel "Acro" morbid growth.... they sluff it off, and dont really pay attention to my pain. Who did, or have you Lauren went to see about relieving this pain.
After I try to work out, or do a light walk... My ankles "Lock" and knees, walking up stairs, bending and carrying things. It gets painful quickly and easily. I've read reports that state that Acromegliacs can develop forms of ankle and joint pains that arnt detected by your average doctor placing their hand on your ankle....
"Your feet are big, your ankles are big, your knees are big, shoulders, chest, neck, head.... But I dont feel any bulges that would warrant Pain...." Umn. Your 65 Doctor, and I feel like I'm going on 75.
When is your second surgery? Is it because they didn't get your whole tumor the first time? I'm wondering how many people have tumors again after having their first tumor completely removed.
I know my psych is waiting for sure on the methylphenidate until she knows more about what is going on with my hormones... but even on hc... im still a crybaby (though it's only been a few days and i may need a higher dose).
I had a incompletely ressected macroandenoma. The facility my head acro specialist is overseeing me is about 10 times better able to handle ressection of perhaps more tumor leftover. I have been on Sandostatin LAR 30 MG X7 months now, to see if any tumor shrinks, awaiting that second surgery we (me and him have agreed will likely be the case), because he believes his Neurosurgeon who specializes in Pit Tumors themselves, will be able to do a heck of a better job than the Neurosurgeon that completed my original tumor debulking out in Winnipeg at Health Sciences.
I thought the Doctors out in Winnipeg were outstanding, the Facility was the first of its kind in Canada to have Gamma Knife in 1994. Lightyears ahead of Toronto General, and ironically my head specialist (Dr Ezzat) completed his University Medical Degree at my Winnipeg Hospital. He is aware of the Neurosurgeon, and he literally did not think much of the operation I 'had out there'.
So... This Apt this Wed.. Will be crutial, as its been an ongoing.... emotional... painful... anxiety filled waiting game for months, almost up to the year point Feb 28th 2011 of my First Surgery... So I am ready for this... to go forward!
Lauren I'm hoping now a few days in on the steroid you are feeling much better. Hugs to you both.
Its amazing such a small gland when it goes awry can cause such havoc! you must be so sick of it all having acro and it's aftermath bad enough without all your other hormone levels playing up. Such a complex beast the endocrine system x
The ACTH Stimulant Test I had on Wednesday lasted 4 Hours. They had 5 Vials taken at intervals of 30 minutes. And Baseline of 12 vials for standard blood work ups.
My IV Pic was inserted a total of three times on my left arm, and two times on my Right. The nurse couldn't get anything from me, I was so low on Sodium. They thought it was more ACTH related then.
Here's Hoping! *Chants* I say Hydro! You Sayyyyyyy.... Cortisone!!!