Curious about others' 17-hydroxycoeticosteroid levels

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Hi,

My name is Alicia and I decided to give this question a shot here. I have been struggling to reach a diagnosis for 18 years now. I am 30. In the last four years or so we have been trying to determine if I am suffering from cyclical Cushing's. 3 consecutive (one a month for three months) 24-hr urine tests back in 2014 were elevated but they were dismissed as "not elevated enough" by every endocrinologist I saw. I also have a tumor that is inside my posterior lobe of the pituitary gland. I was told this is not common and they cannot say for sure what kind of tumor it is. I have an elevated mildly alpha subunit level which is used as a tumor marker which was within normal range only a couple months before the next time it was tested but I was told this was "clinically insignificant". I think you can see where I'm going with this, these doctors are neglecting my issues and I'm getting nowhere. Now, years later, my urine cortisol levels have dropped from a 112 at its highest to a 6 the lowest it's ever been. I was told "I don't know why".

My curiosity is in another level I have come across that none of my doctors seemed to think was odd but I did. I had 17-hydroxycorticosteroids tested twice within only 19 days of each other. The first test (this is done with a urine test) was flagged elevated at 8.9 mg/24h the normal range is 2.0-6.0. 19 days later I had it tested again and it was 1.9 mg/24h. Not a single thing was said about this huge drop from one extreme of high to the next of low. I know 17-OHCS is used as an arsenal function test but I had a new endocrinologist tell me "this test is old and I don't use it anymore". Lol so again my levels were dismissed.

Does anyone know much about this test or have similar results that were actually taken seriously by a doctor? I feel like there's some sort of clue here that they're neglecting.

Any help would be greatly appreciated. (I am in the United States so I apologize if any unit of measurements is it converted!)

Thanks so much!

Alicia

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6 Replies

  • Posted

    So sorry for the typos! 17-OHCS is an ADRENAL test! smile

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    • Posted

      Hi there,

      ​Thanks for contacting us.  I personally did not have Cyclic Cushings but we do have a lady on here who can tell you all you need to know.  She is excellent with all the figures from tests and I am sure will be able to help.  She comes up as Cyclic Cushings and I hope she will be online soon.  Best of luck.  Wish I could help more but I am a very straight forward Cushy.

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    • Posted

      Hi Vicky!

      I really appreciate your comment! I will hopefully be able to get in touch with her! Thank you so much for letting me know! No need to apologize at all, your comment is very helpful in guiding me to others to talk to! smile

      All the best,

      Alicia

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  • Posted

    Hi Alicia

    I live in the United States and I am the first person ever diagnosed with "cyclic" Cushing in 1989 in Seattle. I have had two transphenoidal adenomectamies, in 1989 and again in 2016. Your blood and urine tests can be sky high one time and basically normal the next time. It took nine years for me to get a final diagnosis, I had 23 doctors. I can not tell you how many Dr's I went through who treated me badly, insinuating I was lying about my eating habits and going as far as telling my I was "nutso" and it was all in my head. Yes, they were right, it was in my head, the tumor. I was sent to a physchiatrist who talked with me for 10 minutes and told me "this is a hormone problem, they just can't find it". Finally in Jan of 1989 they did a mri with dye of my head, a radiologist saved my life by seeing that just the stalk of the pituitary was bent and suggested a tumor.

    So don't give up, the best pituitary knowledgeable surgeons are in Boston MA. If you click on the envelope in the corner of this discussion I think you can personally email me if you'd like to talk with me. Otherwise I can converse with you here. What are your blood levels? Are they high? Have they done a dexamethiazone test yet? Are the urine tests just for 24 hours or have they done 48 hour ones? HAve you had a mri with dye? Do you have a moonie face, buffalo hump and how much weight have you gained?

    Your issues may be with getting a Endocrinologist that is top of the line.I had my most problems with the Endocrinologists to believe me and take all the tests needed to get diagnosed. Cushing is rare and "cyclic" Cushing is even more rare.So this is what happens when a lot of Dr's don't know enough about the "cyclic" cushings.

    Just don't give up. Others will answer this post I'm sure

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    • Posted

      Thank you so much for responding to this!! I didn't want to not respond but I would love to send you a PM on here to talk more. I just need a little time to construct the email and give you some of the background info so be patient with me! Between work and a little bit of a hectic day I will find time to email you! I'm so glad you finally found doctors that helped you and I am sooo appreciative that you're willing to talk to me!! Thank you! I look forward to emailing you!

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  • Posted

    Glad that Cycliccushings has replied.!  She will be able to tell you all you need to know.  Thanks cycliccushings!
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