Low cortisol in urine

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My morning serum cortisol was 4.4. I just got the results back from 24 urine cortisol test and it was 4.3. I am off from cortrosyn test this morning. It is very hard to find information about low cortisol. All the endocrinologist has said is that is "on the lower side." My BP is extremely low, and I have sever fatigue and pain. Any input about these levels or what to expect? Thanks.

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  • Posted

    Hi Dena,

    For me, low cortisol and low BP turned out to be secondary adrenal insufficiency... meaning my pituitary gland wasn't working properly. There are 2 main kinds of adrenal insufficiency and both are just as important as the other. Primary is the adrenal gland on top of your kidney while secondary is the adrenal gland in your brain (pituitary). Both have same symptoms of low cortisol which include what you've described with the fatigue and pain. My blood pressure was dropping to 80/40, I would get extremely dizzy from it.

    I'm not real familiar with urine cortisol testing but your baseline of 4.4 is low. I would think the next logical step is to do a STIM test. I would ask your endo to do one if they aren't doing so on their own.

    Having an adrenal insufficiency issue is serious so be your own advocate if you're not comfortable with your endo's answers.

    Best of luck,

    Debie

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    • Posted

      I agree with Debie on the above - I have the same thing.

      However there are a couple of technical details that aren't quite right. Your pituitary is in your skull (behind your eyes) but it is not actually in your brain - though it is connected to it via the Hypothalmus. [So if you have a pituitary tumour, panic not - you don't have a brain tumour]. The really important thing about the pituitary is that it controls most of the hormone-generating organs in the body. It tells the adrenal gland to produce cortisol, the breasts to produce milk [yes, a particular pituitary disease can make men lactate too!], the bones to grow (or stop).. It tells the thyroid to produce thyroxine. It tells the testes [balls] to produce testosterone. It does this using special "messenger hormones" - such as ACTH.

      So "secondary Addison's" ("secondary adrenal insufficiency" ) happens because perfectly normal adrenal glands are doing nothing because the pituitary hasn't given it any instructions. [There isn't actually another adrenal gland in the head].

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  • Posted

    Thanks for the replies. I have unfortunately learned much about adrenal Insufficiency since that post . I do not know, yet, if I am primary or secondary. I am being discharged from the hospital now. I had the ACTH stim test. My baseline was 3.6 and stimmed to 13.5. Two days later, before j saw endocrinologist, BP dropped to 58/42 and I became very ill. Endo sent me straight to ER for admission. Baseline (this was at 10:30 am) was down to 1.6. After two days of 100 mg hydrocortisone IV steroids, I am doing better and see endo tomorrow. Learning that it can get very serious, very quickly.
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    • Posted

      Hi Dena,

      I'm so sorry you're having so many problems! My STIM test was lower than yours, I was flat told the low numbers indicated secondary. The response above from ruad... is spot on in that even tho our pituitary is located in our brain it is not embedded in our brain but dangles from our hypothamalus. I have hypothamalic sarcoidosis which is what caused my adrenal insufficiency. If you have a tumor of your pituitary gland, it normally shows via MRI.

      Sounds like you've learned a lot and are hopefully in the path to feeling better real soon. Best of luck to you!

      Deb

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  • Posted

    Deb, I have been told that only ACTH baseline can determine primary from

    secondary. I have also been told

    that the fact that my numbers did stim

    a good bit, even though they are still well below normal, indicated secondary. Not sure which is true. I see endocrinologist tomorrow and hope to finally get some answers. I was very frustrated that they did none of the imaging in the hospital, which just means more appointments I don't feel up too. It's frightening how the medical profession doesn't understand this disease.

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    • Posted

      It's not so much that they don't understand it as that they rarely see it. A GP can expect to see just one case in an average career. When I had a crisis, the paramedic remarked that she hadn't seen another case since 18 years ago. That's primary OR secondary (or tertiary but they are one in a zillion).

      You'll find that your endo is much more on the ball.

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    • Posted

      Dena, may I advise you to look at the Pituitary Foundation website (pituitary dot org dot uk). They have lots of useful resources for free, especially information sheets for family, A&E staff and paramedics (xref what I said about it being rare). They also have something on the psychological impact of being diagnosed, what to expect if an op is needed [don't worry, it is fairly simple, painless and no stitches nowadays). 

      If you want to ask me anything offline, feel free to send me a pm.

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    • Posted

      Unfortunately, my endo is not on the ball, or really even in the game. My hope today is to simply get hydrocortisone to last until I can find a more reputable endo.
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    • Posted

      Thank you. As soon as the brain fog lifts a bit, I will look at the information. I am sure I will take you up on having a million questions...before appointment, I do have one. Just got back my renin (normal) and aldesterone (slightly low). These were taken sitting up during a hectic day. I have read that the most accurate results are after laying down for 1/2 hour. Activity artificially raises aldesterone. Since mine was low even with a activity, should I ask about Florinef? Thanks!
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    • Posted

      Sorry for long delay in replying - I didn't see this until now. Short answer: I haven't a clue! I'm only an impatient patient too!

      The only time I remember have a lie down was before an ACTH simulation test.

      Good rule: if in doubt, ask. If not in doubt, ask anyway to make sure you got really understood.

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