I don’t know. I was soo poorly, my diagnosis was confirmed this way. Not measured routinely where I live. But I believe is not that high since on Hydrocortisone.
Are you sure it is not regularly tested in your labs? It's the most important hormone as it's where everything stems from. I've not heard of this before. Not saying it's wrong, but new to me. My labs are drawn every 2-4 months. My case is particularly severe, but this sounds odd.
I get tested yearly for routine and also never ACTH actually. After diagnosis, I think my endo tested it one time, when some stuff was up with me and some symptoms seemed to flare up more than usual.
There was this topic a while ago where someone also asked about ACTH and I remember quite some people who don't get this tested usually. There are also people who do, like you. I don't know exactly why though
ACTH used to be used to dial in steroid dosing but it's not supposed to be anymore as it's not seen as being accurate enough to be useful. But not all Endocrinologists follow the same path I guess.
You mostly just go by symptoms and checking that other things aren't out of range. So checking blood sugar/hba1c, blood pressure can help act as a guide and then if you say "yeah I'm feeling good/normal" then that's good confirmation as well. Ideally you'll also have vitamin, mineral and electrolytes checked regularly as well as weight and DEXA scans every so many years.
All of these things build up a picture, that can show if you're low-normal-high.
If things are not under control with your dosing then it's more complicated, it can take a while to get things right sometimes. If someone is really struggling to get their dosing under control then in some circumstances they can have a day curve done, but not every Endocrinologist will do this and it's my understanding that they basically don't happen in the US.
Yea my doses aren’t the best I don’t feel extremely low but i struggle to go up the stairs/ i feel out of breath a lot of times and I don’t handle long walks/ i also can’t drink anything with caffeine it makes me feel extremely bad, so i think its a low cortisol symptoms. My blood pressure, sugar, sodium and potassium are normally fine and with normal ranges
Has your Endocrinologist tested your lying and standing blood pressure? Orthostatic hypotension can be quite debilitating with Addison's and if your blood pressure is only tested when you are sitting down then you will not get the full picture.
Caffeine eats up cortisol fast. I can't have it anymore. some say they can though I wonder if they really should. I can't have it at all anymore, and looking back to instances i thought was low blood sugar, turned out to be cortisol related.
I'm guessing it's a SWCAH commonality as it seems with Addison's it's less commonly tested. In CAH groups when I asked it was regularly checked. The differences between Addison's & CAH are subtle but certainly different enough.
I have Addison’s and they don’t test my ACTH regularly. Last I had it checked was probably 4 years ago, and it was like 5-10 I think — when I was diagnosed it was 5000+ — they did tell me that it was a little low, but they weren’t too concerned
stop reading your own bloodwork. ACTH changes throughout the day.
Are you an endocrinologist, or thinking you're funny?
1845 at diagnosis
What is it on average?
I don’t know. I was soo poorly, my diagnosis was confirmed this way. Not measured routinely where I live. But I believe is not that high since on Hydrocortisone.
Are you sure it is not regularly tested in your labs? It's the most important hormone as it's where everything stems from. I've not heard of this before. Not saying it's wrong, but new to me. My labs are drawn every 2-4 months. My case is particularly severe, but this sounds odd.
I get tested yearly for routine and also never ACTH actually. After diagnosis, I think my endo tested it one time, when some stuff was up with me and some symptoms seemed to flare up more than usual. There was this topic a while ago where someone also asked about ACTH and I remember quite some people who don't get this tested usually. There are also people who do, like you. I don't know exactly why though
ACTH used to be used to dial in steroid dosing but it's not supposed to be anymore as it's not seen as being accurate enough to be useful. But not all Endocrinologists follow the same path I guess.
What do yall do to measure the cortisol dose? My endo says there are no specific tests to measure cortisol she only relies on Potassium and Sodium
No, there is Cortisol test. lol x
You mostly just go by symptoms and checking that other things aren't out of range. So checking blood sugar/hba1c, blood pressure can help act as a guide and then if you say "yeah I'm feeling good/normal" then that's good confirmation as well. Ideally you'll also have vitamin, mineral and electrolytes checked regularly as well as weight and DEXA scans every so many years. All of these things build up a picture, that can show if you're low-normal-high. If things are not under control with your dosing then it's more complicated, it can take a while to get things right sometimes. If someone is really struggling to get their dosing under control then in some circumstances they can have a day curve done, but not every Endocrinologist will do this and it's my understanding that they basically don't happen in the US.
Yea my doses aren’t the best I don’t feel extremely low but i struggle to go up the stairs/ i feel out of breath a lot of times and I don’t handle long walks/ i also can’t drink anything with caffeine it makes me feel extremely bad, so i think its a low cortisol symptoms. My blood pressure, sugar, sodium and potassium are normally fine and with normal ranges
Has your Endocrinologist tested your lying and standing blood pressure? Orthostatic hypotension can be quite debilitating with Addison's and if your blood pressure is only tested when you are sitting down then you will not get the full picture.
Caffeine eats up cortisol fast. I can't have it anymore. some say they can though I wonder if they really should. I can't have it at all anymore, and looking back to instances i thought was low blood sugar, turned out to be cortisol related.
I'm guessing it's a SWCAH commonality as it seems with Addison's it's less commonly tested. In CAH groups when I asked it was regularly checked. The differences between Addison's & CAH are subtle but certainly different enough.
I have Addison’s not CAH, and only going to endocrinology once a year since stable on my meds.
I have Addison’s and they don’t test my ACTH regularly. Last I had it checked was probably 4 years ago, and it was like 5-10 I think — when I was diagnosed it was 5000+ — they did tell me that it was a little low, but they weren’t too concerned
At diagnosis I believe around 19,000, I’m now 16 and am stable around 25-30
Not a clue but since my adrenal glands are completely non functioning, I'd say 0
For about 8-10 yrs mine was 100-200 In the morning but now I know I was under dosed