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High ACTH
I have been having anxiety before my exams. I also have been having low blood pressure and lightheadness. My doctor got my ACTH checked and it is 45. He wants a pituatary MRI done, I am kind of worried.
Well, if you look at my bp tracker, you will see that my BP goes all over but a lot down.
If you did not see the tech put the tube for the ACTH tube in the centrifuge while you were sitting there, your ACTH was actually a lot higher. The tube itself should have come from a freezer, not from the little bin they use. Signs of lab error. ACTH will only decrease with lab error, not decrease - mine will change by hundreds of points when they goof it up (mine is up to 2330 range 4-27 now). Renin is just as fussy. Learn to tell them that they need to look a the instructions before they draw, or I finally just got ticked off and brought ice in a zip lock sandwich baggie to the lab and make them rest the ACTH and renin on it and make them spin it while I am there. I am such a pain but I want my tests as accurate as possible as I am judged on them. My renin is high too. But I have no adrenals anymore...
25mcg? Ah... pfffft... What thyroid test is that based on?
Make sure you get copies of everything - scans, reports, labs - all of it! Read it all.
The tingling can be potassium. I have a buddy - my tumor twin - who also has a failing kidney - that loses potassium for reasons unknown. It is strange, but not unheard of. I also lose potassium with an adrenal crisis which is not the norm. V-8 is my friend. Lots of sodium and potassium.
If you did not see the tech put the tube for the ACTH tube in the centrifuge while you were sitting there, your ACTH was actually a lot higher. The tube itself should have come from a freezer, not from the little bin they use. Signs of lab error. ACTH will only decrease with lab error, not decrease - mine will change by hundreds of points when they goof it up (mine is up to 2330 range 4-27 now). Renin is just as fussy. Learn to tell them that they need to look a the instructions before they draw, or I finally just got ticked off and brought ice in a zip lock sandwich baggie to the lab and make them rest the ACTH and renin on it and make them spin it while I am there. I am such a pain but I want my tests as accurate as possible as I am judged on them. My renin is high too. But I have no adrenals anymore...
25mcg? Ah... pfffft... What thyroid test is that based on?
Make sure you get copies of everything - scans, reports, labs - all of it! Read it all.
The tingling can be potassium. I have a buddy - my tumor twin - who also has a failing kidney - that loses potassium for reasons unknown. It is strange, but not unheard of. I also lose potassium with an adrenal crisis which is not the norm. V-8 is my friend. Lots of sodium and potassium.
Thank you so much for the information.
I have a history of hydronephrosis L kidney and it is non functioning now. For the past two weeks, I noticed that I get tingling feeling in my L arm and leg and feel lightheaded, headache and have palpitations. When I checked my pressure it was 78/50, 73/50. My norm BP is usually 90/60. I noticed I had shortness of breath when I spoke. I went to my PCP, she got my blood chemistry, cortisol, TSH levels done and they came back normal. I got the same symptoms after a week, so my PCP referred me to an endocronologist. My endo got another set of bloodwork done. Renin, ACTH, thyroid, aldosterone, cortisol levels. Yesterday I got the timed cortisol tests done. I got a call from my endo he said my thyroid was borderline and he wanted me to be on synthroid 25 mcg. Meanwhile he said I needed to get a pitiutary mri done with dye to rule out tumor. He got a bone scan and an echocardiogram done too.
I dont know if the blood was kept in a chilled tube or spun.
I have been visiting doctors regularly for the past 15 years. I am kind of really tired.
Thank you for listening
I have a history of hydronephrosis L kidney and it is non functioning now. For the past two weeks, I noticed that I get tingling feeling in my L arm and leg and feel lightheaded, headache and have palpitations. When I checked my pressure it was 78/50, 73/50. My norm BP is usually 90/60. I noticed I had shortness of breath when I spoke. I went to my PCP, she got my blood chemistry, cortisol, TSH levels done and they came back normal. I got the same symptoms after a week, so my PCP referred me to an endocronologist. My endo got another set of bloodwork done. Renin, ACTH, thyroid, aldosterone, cortisol levels. Yesterday I got the timed cortisol tests done. I got a call from my endo he said my thyroid was borderline and he wanted me to be on synthroid 25 mcg. Meanwhile he said I needed to get a pitiutary mri done with dye to rule out tumor. He got a bone scan and an echocardiogram done too.
I dont know if the blood was kept in a chilled tube or spun.
I have been visiting doctors regularly for the past 15 years. I am kind of really tired.
Thank you for listening
What he is testing for is Cushing's syndrome. I had it.
What other tests have you had? Usually an MRI is last as it tells you the least. 40% of pit tumors do not show up (my second one hid for 12 years!) so it is really the blood and urine and saliva that tells the tale. You need a lot of testing. There is no single test that tells you if you have it or if you do not have it (so if some doc runs a suppression test and rules it out, get another doctor, that doc has no experience or expertise) as well, you need a lot of tests to say where the source is. It is not always straightforward. For instance, my ACTH was always normal and to an inexperienced doctor that might mean adrenal source, but mine was pituitary. The suppression on the dex test showed it. To most doctors, suppression means you do not have the syndrome but in reality, it is not a test of exclusion. Tons of us *fail* that test and still have it so the doctors are wrong in that interpretation.
You need to get copies of everything - labs, films, reports and keep a copy for yourself at all times. Read it all. You will not understand anything at first but you will come to understand things gradually so you need to have things to make sure that the doctors are on the ball so you know when to stay or when to go.
My blood pressure was low throughout my Cushing's even though the norm is high. You do not need to have every symptom. I did not and I was very sick.
Also, make sure your tests are done correctly. ACTH is very picky - was it in a chilled tube and spun when you were there? Renin is the same. Keep urine jugs cold no matter what they say. Lab error plays a part in diagnosis here.
Good luck.
What other tests have you had? Usually an MRI is last as it tells you the least. 40% of pit tumors do not show up (my second one hid for 12 years!) so it is really the blood and urine and saliva that tells the tale. You need a lot of testing. There is no single test that tells you if you have it or if you do not have it (so if some doc runs a suppression test and rules it out, get another doctor, that doc has no experience or expertise) as well, you need a lot of tests to say where the source is. It is not always straightforward. For instance, my ACTH was always normal and to an inexperienced doctor that might mean adrenal source, but mine was pituitary. The suppression on the dex test showed it. To most doctors, suppression means you do not have the syndrome but in reality, it is not a test of exclusion. Tons of us *fail* that test and still have it so the doctors are wrong in that interpretation.
You need to get copies of everything - labs, films, reports and keep a copy for yourself at all times. Read it all. You will not understand anything at first but you will come to understand things gradually so you need to have things to make sure that the doctors are on the ball so you know when to stay or when to go.
My blood pressure was low throughout my Cushing's even though the norm is high. You do not need to have every symptom. I did not and I was very sick.
Also, make sure your tests are done correctly. ACTH is very picky - was it in a chilled tube and spun when you were there? Renin is the same. Keep urine jugs cold no matter what they say. Lab error plays a part in diagnosis here.
Good luck.
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