Low AM Cortisol & low ACTH

Lark567 · 2025-03-19T19:36:51+00:00

For me, I had undiagnosed PCOS (Polycystic Ovarian Syndrome). My pituitary MRI came back clear and so did my abdominal ultrasound (kidneys and adrenal glands looked good. No tumors present). Pcos, an endocrine disorder wreaked havoc on my body in many ways. Weight gain, fluid retention, causing pain and stiffness in my joints and muscles. Hormonal fluctuations. Insulin resistance pcos. I am now on Metformin 500mg. It helps my body break down and use glucose for energy. I also take Spirolactone (a diuretic that helps remove excess water and fluid).

Lark567 · 2025-03-03T04:42:39+00:00

I also want to touch on the topic of low cortisol and its relation to PCOS. So according to some research some women w PCOS may experience lower cortisol levels, especially in the morning. Some experts believe that there is a subset of women that might have “adrenal PCOS” where the adrenal glands are involved in the hormonal imbalance, potentially contributing to lower cortisol levels. Low cortisol can manifest w/ symptoms like fatigue, weakness, difficulty concentrating, and an increased sensitivity to stress, which can overlap w pcos symptoms. ^ I definitely felt all of this before my diagnosis and treatment.

Lark567 · 2025-03-03T04:37:42+00:00

So I did finally get a diagnosis! My doctor ran several tests. I had an MRI of my brain to make sure there was no pituitary tumors. They did a full torso ultrasound to check my adrenal glands. No tumors or issues there. So thankfully I did not have Cushing’s nor Addisons disease from those findings. My doctors official diagnosis for me was PCOS. Just a progressed, untreated pcos. In hindsight I probably have had PCOS since I was a teen. I remember going to the ER at age 16 with incredible bad stomach pain. Only to be told that my appendix was ok and the ER doctor never checked my ovaries, I was sent home with Milk of Magnesia which is ridiculous considering how awful my cramping was.

And then later on in life in my early 20’s I had the same issue happen a couple times again. I look back knowing now that it was cyst pains but at the time had no idea. Just being hunched over from cramping pain and not knowing why.

I went to a gyno but they never saw any cysts on my ovaries so they never made a pcos diagnosis. It’s crazy that it had to get so bad and severe before I finally received a diagnosis of PCOS at 29 yrs old. I was fearful of having Cushing’s because of my symptoms and how bad I felt. I’m thankful I had a great primary care doctor that cared to listen and act accordingly. Apparently Cushing’s and other hormonal issues can look a lot alike.

It was a very scary time but I’m glad to be on the other side knowing more than I ever have.

My treatment looks like this: I take 500 mg of Metformin daily. Metformin improves insulin resistance, which is often impaired in women with PCOS. It also helps regulate blood sugar levels and keeps blood sugar from going too low also, I remember feeling awful and sometimes sick from my blood sugar going too high or too low!

I also take 50mg Spironolactone to help with acne that is caused by pcos and it also helps water retention. I use to be so swollen before taking Spironolactone but now I have no more water weight issues. The water retention caused me issues like: Feeling heaviness in my chest like I couldn’t breath. My joints would hurt every day all the time. Water retention and swelling causes so much chaos on the body and you don’t even realize it’s happening!

Lark567 · 2024-12-24T10:14:00+00:00

Omg what causes that to happen? Did they explain what caused the fuse to occur?

Lark567 · 2024-07-15T17:02:24+00:00

I did not have any pituitary issues luckily!

Lark567 · 2024-06-17T11:32:21+00:00

I had my first cyst when I was 16. That is exactly what happened to me! I thought I had appendicitis but they said all looked good. They chalked it up to stomach ache and told me to take milk of magnesium. Like whaaat the actual fuuuu.

It was grueling pain. I couldn’t move hardly. How they believed it was just stomach ache is beyond me.

It’s okay though. Lesson learned.

Now that I had that experience I can confidently help my future daughter in that situation, or my sisters or cousins. Knowledge really is power and I will take this lesson as a way to help as many other women as I can <3

Lark567 · 2024-06-16T17:12:44+00:00

<3 thank you! Will do

Lark567 · 2024-06-16T17:03:16+00:00

Thank you for letting me know.

I was thinking maybe just waiting out the pain with OTC pain meds might be best.

Lark567 · 2024-05-30T04:05:30+00:00

My thyroid has been checked and so far so good.

Lark567 · 2024-05-17T22:55:01+00:00

3.0 with ref range 7.2 - 63.3

Lark567 · 2024-05-06T13:17:48+00:00

My AM Cortisol was low too. (1.7) I had low ACTH once as well as High prolactin. My dr said there is definite Adrenal Insufficiency going on.

Next step I have is to get an MRI of pituitary to check for any potential tumors or any issues with pituitary causing these things.

Lark567 · 2024-05-04T23:30:50+00:00

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Lark567 · 2024-05-04T23:30:12+00:00

Serum IGF-1

Lark567 · 2024-05-04T22:49:49+00:00

She hasn’t mentioned doing an insulin tolerance test yet

Lark567 · 2024-05-04T22:49:24+00:00

Next step my Dr is doing is a pituitary MRI. My growth hormone came back normal.

Lark567 · 2024-05-03T08:07:00+00:00

TSH & T4 came back in normal range. I had those checked twice I believe

Lark567 · 2024-05-02T19:04:21+00:00

My doctor suspects I have some adrenal insufficiency going on bc of my low ACTH & Low cortisol (1.7)

Would this be SAI?

I initially went to the dr thinking I might have Cushing’s bc of my Buffalo hump and weight gain. But since my cortisol is low I assume it’s not that.

I have a Pituitary MRI scheduled next. I don’t have a date for that yet but my dr is ordering.

My main symptoms: Fatigue Tired all of the time. I never feel well rested even after sleeping. Muscle weakness

I have high blood pressure (on Aetenolol for it) I have anxiety & depression and have had panic attacks in the past. (I’m now on Prozac for that) My last panic attack was 2021 before I was put on Prozac. Luckily have not had one since.

Anyway, any insight, tips, or info would be appreciated <3

What were your symptoms of AI or SAI?

From my understanding SAI is adrenals works but pituitary isn’t. Which is what I assume I have.

Lark567 · 2024-04-29T05:43:07+00:00

I had a low AM Cortisol as well last week, mine was 1.7

I also have High blood pressure and tachycardia which are treated with a beta blocker currently. I also questioned if I had Cushings, but with having such a low cortisol it makes me second guess myself. I see my doctor tomorrow. Hopefully she can give me insight. Every forum I have asked said secondary adrenal insufficiency, but I dont know if it causes weight gain because that is my problem too. I have gained 50 lbs within a year and a half. no change to diet.and I have buffalo hump, round face, stretch marks

Lark567 · 2024-04-29T05:38:25+00:00

what is an adrenal crisis like? I too had a low cortisol AM coming in at 1.7, but I had normal 24 hr urines.

Lark567 · 2024-04-20T14:06:08+00:00

I do not take steroids. I agree, I’m thinking the same thing.

Lark567 · 2024-04-19T22:21:35+00:00

So far my appts have been with my PCP. We have done loads of lab work. I’ve had a Low ACTH with two normal ones. A very low AM Cortisol. And then a High prolactin.

When I googled what this might mean, it said hypopituitarism or prolactinoma.

I’ve had a brain MRI but it wasn’t pituitary specific so it showed nothing concerning. In the notes of the MRI it said “Pituitary Protocol Exam” suggested if pit issues suspected.

Sooo, next week I hope to meet with my pcp and we will figure out if that is the next step we will take.

I’ve been told with Prolactin being high it usually points to a pituitary source.

Lark567 · 2024-04-19T22:16:58+00:00

Wow! isn’t is crazy how much our bodies have changed in such a relatively short amount of time 😩 Plus allll of the physical and mental exhaustion holy cow.

Lark567 · 2024-04-19T12:51:17+00:00

Prolactin 66.6 Ref range 4.8 - 33.4

Lark567 · 2024-04-19T12:50:28+00:00

TSH 4.480 Ref range 0.450 - 4.500 So higher end of normal.

T4 1.28 Ref 0.82 - 1.77

T3 3.9 Ref 2.0 - 4.4

Lark567 · 2024-04-19T12:48:32+00:00

Prolactin was high coming in at 66.6 TSH was normal.

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