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Brain/Pituitary Tumors Community
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Avatar universal

ACTH high

Hi,
I'm new here and just have a question or two for anyone who might be able to give me any direction.  Recently my Dr. ran blood work and informed me that my ACTH levels were high at 63 (9-52 range.) The draw was at 1:00 in the afternoon, rather than the typical 8am, so wouldn't that mean that my actual level would be higher?  My cortisol was 8.9 at that time, is that high as well?  I don't have a range for that.  I know this is only the beginning, but he is sending me onto an endocrinologist for further testing. Just wondering if a) these values are high and b) can Cushing's be a possibility?  My symptoms include migraines and or headaches several times a week (more frequent in the past year,) worsening insomnia, dizziness, fatigue, cold intolerance, lack of libido, anxiety, weight gain, hump on back and excess fat above collar bones (have had the fat at the back of the neck/upper back for a long time now.)
Thanks very much!
7 Responses
Avatar universal
COMMUNITY LEADER
ACTH is a crazy hormone... it is also a fussy test. It needs a chilled tube and to be spun immediately or it degrades quite quickly (minutes).

Your cortisol appears to be normal, but it is hard to tell without a range. However, cortisol in a normal person is supposed to peak in the morning and drop through the day aka diurnal rhythm. If you have Cushing's (I had it myself) you can have a reversed rhythm or a really skewed one where you are too high. I was super high at night and super low during the day - which BTW made my 24 hour urine tests look only mildly high! Only found that after we did urine tests at night.

Your symptom set certainly fits in the realm of Cushing's so you need to get the sets of testing you need to get over to a pituitary center. Just make sure you get copies of tests, and do all you can to get accurate testing (I got lousy instructions, or the lab messed up, say ACTH for years) so read up or ask questions as it really helps to be an educated patient. You may have to doc shop to find an adequate doctor as not many doctors have treated this effectively. They will say it is rare (like there is a quota) and ignore high testing or if you are like me, I was cyclical, I had a hard time finding doctors that knew that hormones cycled (periods anyone?).

I always test at 8am fasting.
Avatar universal
Thanks for your advice Rumpled.  Endo app't. is on Wednesday so I'll ask for the appropriate tests to rule out any adrenal or pit issues.  It'll be interesting to see what's going on as the insomnia is getting out of control, and it does all feel like something hormonal is at play.
1370830 tn?1280176503
Hello , Rumpled is very informed, so any advice given I would take it. The testing for Cushings is very precise and as Rumpled stated most Docs that order tests dont know the correct instructions to give the lab. it is important to find a doctor who is highly knowlegeable abt the pituitary. The best advice I have is " It's your health , your body" if you dont feel right you know. Don't take no for an answer, if your doctor isn't listening to you find another one. Ask questions knowlege is key.
Avatar universal
I agree Doodles!  Saw my primary today, Endo is Wed and he has already ordered an ACTH Stim Test for next week.  My primary mentioned the adrenals due to the dizzy spells and weakness, but still mentions the pituitary as a strong possibility.  I hope that test will tell us enough to begin with, as I have symptoms from both adrenal insufficiency and Cushing's so I know it must be challenging!
Avatar universal
COMMUNITY LEADER
Keep us posted on the testing. I hope the doc sends you over to a good endo. Just make sure you get copies.

Make sure the stim test starts at 8am so it is valid.
Avatar universal
Well Endo did the Stim test at 2pm, he insisted that as long as the baseline is taken it doesn't matter when it's run, that they routinely run them in the afternoon.  I wasn't happy but couldn't change the time.  The results:

Baseline:  8.6
30 min.    31.2
60 min.    34

Is it odd that the baseline is relatively low in reference to the fact that it more than tripled?  Can we rule out adrenal/pituitary issues?  He said my results are normal even with my ACTH 63 at 1pm, that he's not concerned that it's a little high.  Can all of this point to anything, and can we also rule out Cushing's?  Was there a need to run another test?  
Thx!
Avatar universal
COMMUNITY LEADER
If the endo read medical papers... he would see it needs to be at 8am... grrr.

It needs to be at your peak, not when cortisol is ebbing.

So yeah, you did double, but it did not rule out Cushing's. I had normal stimulation tests with everything - and still had it.

You need more testing. More cortisol testing.
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