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24-hour steroid hormone urine test results

Messages
32
I have not posted here very often, but this forum is an incredible source of information and has proved very useful to find answers to many questions. I am and have been for going on ten years searching for the mystery illness that has a hold on my now 27-year old daughter. Just recently we received the results of a urinary 24-hour steroid hormone test, and we are rather concerned because a lot of the results show elevated numbers. My daughter is treated by a couple of specialists and one of them requested this test, but now that the results have arrived he doesn't seem to know very well what they mean :( . We consulted an endocrinologist but he was not familiar with this kind op testing and couldn't help. Does anyone have knowledge of these results and let us know what they mean? I would be so grateful!


Aldosterone 94.6 (nmol/24hr 16.6 - 69.3)
Testosteron 4.7 (μg/24hr 1.7 - 12.8)
2-hydroxyestrone (E1) 7.0 (μg/24hr 1.9 - 15.8)
4-hydroxyestrone 8.9 (μg/24hr 4.4 - 18.7)
16-hydroxyestrone 4.0 (μg/24hr 1.7 - 5.8)
2/16 hydroxyestrone 1.8 (ratio >= 2.0)
17-hydroxyprogesteron 4.1 (μg/24hr 0.9 - 4.5)
Estradiol (E2) 7.7 (μg/24u 2.2 - 17.3)
Estriol (E3) 61.7 (μg/24hr 4.0 - 79.3)

Androsteron 14.2 (μmol/24hr 2.3 - 9.7)
Etiocholanolone 6.7 μmol/24hr 2.4 - 9.4)
DHEA 3.5 (μmol/24hr <= 2.8)
11-keto-androsterone 2.4 (μmol/24hr 0.3 - 1.9)
11-keto-etiocholanolone 5.0 (mol/24hr 0.3 - 1.8)
11-hydroxyandrosterone 9.1 (mol/24hr 1.3 - 4.8)
Androstentriol 3.5 (μmol/24hr)
11-hydroxyetiocholanolone 3.5 (μmol/24u 0.5 - 2.7)
17-keto steroids 44.5 (μmol/24hr 9.9 - 30.6)
Tetrahydrodesoxycortisol 1.7 (μmol/24hr 0.2 - 1.2)
Tetrahydrocortison (THE) 9.4 (μmol/24hr 4.4 - 11.6)
Tetrahydrocortisol (THF) 8.7 (μmol/24hr 2.4 - 7.0)
Allo-tetrahydrocortisol (aTHF) 9.5 (μmol/24hr 1.1 - 5.6)
THE/THF 1.1 (ratio 1.2 - 2.8)
THF/aTHF 0.9 (ratio 0.7 - 3.2)
17-hydroxysteroids 29.3 ------ ------ ------ ------ μmol/24hr 10.2 - 23.6
Pregnaantriol 4.10 ------ ------ ------ ------ μmol/24hr 1.00 - 3.90
Pregnaandiol 4.10 ------ ------ ------ ------ μmol/24hr 0.70 - 7.10

I would like to add her DHEA-S in saliva:
DHEA-S >25 (μg/l 3 - 10)/ cortisol was normal apart from a flare up in the early evening.

Any help would be so much appreciated! Thanks :)
 
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Research 1st

Severe ME, POTS & MCAS.
Messages
768
Hello.

Firstly I am not a doctor and always take with scepticism what internet dwellers tell you, including me. It's a doctor who knows what to do, not us. However, I appreciate your reasons for asking for help, as complex or missed conditions tend to make doctors get exasperated and some give up too quickly.

However, I will now try and answer on the basis to me there are some potential (but not proven) possibilities there may be abnormalities in the results that are worth chasing up. The number one problem here for a doctor, is I am presuming you are using an 'out sourced' 24hr urine test and not a hospital test? If so, this is why they lack confidence to chase up the results. This is common practice in medicine, unfortunately. The primary reason is the accuracy of the test - if it is privately sourced. Doctors don't want to waste time repeating tests they are sceptical about or lack confidence on. Hence they can easily reject the patient. This is just common practice and nothing personal. Honest mistakes can happen with urine tests. Labs can forget to add preservative/acid in the bottle. The sample can get too warm. The sample may not arrive on time. In females, blood can contaminate samples and elevate levels, in which a sample is presumed not to contain blood (etc etc). Doctors know this, and some cannot be bothered to explain this to a patient, and be up front and say, look your test is a urine test. I'm not confident on the results, so I don't know. This seems to be your experience and others. Still as individuals we can look at possibilities for medical problems, even if they are vague and not cast iron facts as we aren't medically trained.

As a patient, as a person with pituitary problems (whose had the tests I'm going to mention) I'd consider asking your doctor or any other qualified medical professional to investigate PCOS (polycystic ovary syndrome) due to elevated:

17-hydroxysteroids
Aldosterone
Androsterone

Other conditions to rule out or dismiss by a doctor:
Cushing syndrome (Pituitary problems not uncommon in anyone with ME CFS Lyme)
Cancer.

Alongside ruling out, PCOS get them to do a full pituitary function work up:
Usually these are simple hormone blood tests (not urine tests) such as: Cortisol, Prolactin, Estrogen, Testosterone, Growth Hormone, IGF-1 etc.

If other symptoms are suggestive of a pituitary problem they can also do a specialist high res MRI of the pituitary gland to look for cyst or an adenoma (these aren't brain tumours). Note this won't show up on a normal MRI and also usually involves IV contrast agent. Other dynamic (stimulation) tests can be done too in hospitals. (Cortisol, Growth Hormone, Glucose).

It's best to discuss this all with your doctor. As the endocrinologist isn't interested, get the blood work done next, and then if the results are abnormal, then they'll take you on in my view. Probably this is the reason they aren't currently interested is the results as you're using urine tests.

The 'Gold standard' in a doctors office for new referral patients are abnormal hormonal blood tests, this is why they say that are not ''familiar'' with ''that method of testing''. With doctors, you have to read between the lines in their speech as they are trained to reject patients they aren't comfortable with (goes beyond their expertise), without using obvious words that offend.

If a doctor (MD) ordered the test, then they are not being full with the facts that they ''don't know'' what the results mean. If a non doctor ordered the test, then it makes sense they don't know what the results mean, as they aren't a doctor!

Remind a doctor (MD) of the tests an the conditions you would like ruling out, by repeating the tests with blood on hormones that would be abnormal, such as PCOS or Cushing's.

Also be mindful conditions such as Lyme can mess with your hormones. You may have some 'freak' hormonal test results that are never repeated. So keep that in mind, that just because these results are abnormal now, it doesn't mean they will be again.

So the next thing to do, is to show a doctor, re-test (with blood) and see where you go from there. Ok? I hope that helps.

All the best.
 
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Messages
32
Hi Research 1st,

Thanks so much for your reply. We have stacks of test results from 2010 -2015,r and have just A couple of years ago she was actually diagnosed with PCOS and the PCOS symptoms have improved significantly, as far as regularity of her periods go. From none what so ever for three years to regular periods every month (possibly due to dietary changes and supplements, one which has helped a lot - I guess - is D-Chiro Inositol ) all be it accompanied with extreme period pains and dreadful PMS/PMDD (still present). Her urinary testosterone is within range so I guess the blood work she had done last year, where her free testosterone level was sky high, will be better too. But we won't know for sure until we've tested it again. Last year I posted all her results (at least the ones that were out of the ordinary) in a different thread:
http://forums.phoenixrising.me/inde...ow-what-these-results-mean.33726/#post-522097

I have often thought of Cushing's myself as she has many of the symptoms apart from two major ones: the buffalo hump and the moon face, but maybe they are not absolutely necessary in all cases... In 2010 we discussed this with her endo and he said he didn't think this was the problem. However this could not have been more than an observational diagnosis as he only ordered a minimal amount of blood tests, that would not indicate anything substantial. Looking at the Mayo Clinic's list of common signs:

symptoms involve progressive obesity and skin changes, such as:
  • Weight gain YES and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) NO, and between the shoulders (buffalo hump) NO
  • Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms YES
  • Thinning, fragile skin that bruises easily ?
  • Slow healing of cuts, insect bites and infections ?
  • Acne NO
Women with Cushing syndrome may experience:
  • Thicker or more visible body and facial hair (hirsutism) YES
  • Irregular or absent menstrual periods NO LONGER
Other signs and symptoms include:
  • Fatigue YES
  • Muscle weakness YES
  • Depression, anxiety and irritability YES
  • Loss of emotional control YESSSS
  • Cognitive difficulties YES
  • New or worsened high blood pressure IRREGULAR
  • Glucose intolerance that may lead to diabetes YES
  • Headache YES
  • Bone loss, leading to fractures over time YES

Many of these symptoms could be caused by a variety of diseases of course. She also has methylation problems (folate), urinary retention and dysbiosis in her resident gut flora and virulence factor (catalase), Nadine 5-hydroxyindolazijnzuur (5-HIAA) serotonine laag - 0.91 mmol/mcr – ref 0.00 - 20.00 = Low 5-HIAA indicates inadequate production of serotonin. Symptoms include: constipation, depression, fatigue, insomnia, attention deficit and behavioral disorders I know we need to do blood work again and additional scans etc. but the problem with testing right now is that she can't have them done (not even a blood test), because is so terribly stressed and I am talking major stress with a capital M, that result in anger and rage and despite all the breathing exercises, talk therapy and mild yoga exercises to calm her down, she can't get rid it. Also she suffers from OCD (checking everything a hundred times) so going somewhere stressful is a major operation. Then the mere thought of having to go through all the procedures aggravates her stress and the worry that she might get an angry outburst amidst all the expensive hospital equipment is one of her biggest fears. So we're trying to find the cause(s) of her extreme stress/anxiety, then we can continue testing.

Thanks again Research 1st, your comments where very helpful :)