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my doc says salivary cortisol doesn't matter if serum cortisol is alright??

Hi everyone, I've been lurking for a while but this is my first question :) I need serious help, I'm desperate. I've been suffering for 2 years- EXTREME fatigue, muscle weakness, memory problems, brain fog, insomnia, cold hands and feet, significant weight loss (happened very fast), hypoglycemia (which is now gone??), fluctuating blood pressure that goes VERY low, and irregular periods. I'm 23 now. When it started, my sex hormones (esp. estradiol) were low so they put me on birth control. I started getting periods and gained some weight back up but felt no better. I've been to countless doctors- a lot of them refuse to even look at my results and say I must be depressed. Most have just told me to look for a therapist or that it must be a thyroid issue. I finally went to an endo that thought it might be the adrenals and ordered a stim test- the test was ok, as was serum cortisol in the morning. But I went to another doc who ordered salivary cortisol that came back VERY low. I emailed the endo who had sent me to do the stim test and she said salivary cortisol only works for diagnosing excessive cortisol, and not a deficiency, and since serum cortisol was alright, I shouldn't worry. What do you think??? Please help me.

My stim test results:

Base ACTH: 27 (Normal range- max 57)
Base Cortisol: 8.2 (Normal range 7-25)
Cortisol 30 mins: 20.8
Cortisol 60 mins: 25.3

Although I've had serum cortisol done before that came out 17 and 19, respectively.

In saliva, all FOUR readings came back lower than 1.4. (It says normal cortisol for morning- up to 19, normal cortisol night-time, up to 8)

In blood, potassium and sodium come up fine, DHEA and T3 are low, Progesterone is low. PLEASE help. Is it true that saliva cortisol doesn't measure low cortisol? Or that it doesn't matter if serum cortisol and stim test are ok?? I've read that saliva cortisol measures free cortisol, so if anything i'd think it's more important than serum cortisol. I will appreciate any input I can get from the bottom of my heart. Thank you guys <3
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Avatar universal
Hi no I haven't and I have considered doing some test privately so that is in the pipe line! Just seem to get nowhere with the Nhs!
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Avatar universal
Low T3? That's a thyroid problem.  Did they test your T4? Many adrenal symptoms overlap thyroid symptoms.  T3 is your 'feel good' thyroid hormone, if you're low on that then you must certainly be low on T4 and start taking Synthroid  right away. You can order a test yourself from Request a Test *******. Buy it, print the email and take it to Labcorp.  Don't mess around with doctors, half the endos out there so useless, would rather wait till you're practically dead before they recognize a problem.
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Avatar universal
Just had full blood count and all normal sometimes my anxiety is high makes me feel awful just want some answers now!
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Avatar universal
Could it be adrenal fatigue?? At the moment finding hormones worse after my period and feeling fine week before period! Getting digestive issues, feeling fatigued exercise intolerance the list goes on
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I had ultrasound and apparently all normal! Very frustrating
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Avatar universal
YES, I totally feel you!! My hormones are haywire and constantly changing! :o I've been to so many docs, some which don't want to pay attention and just say 'You must be depressed', and some that do, and actually look into my lab results. How's your red/white blood cells? Any anomaly there? Also, have you had a pelvic/gynecological ultrasound?? High testosterone and dheas sounds like you could also have pcos. It's worth it to check with your doc!! Keep me posted, sending my very best wishes your way, truly! xx
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Is you're testosterone high? My testosterone and dheas is apparently slightly high?!? So confused like you say you want answers but they seem to be know help! Please keep me posted on you're journey x
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Avatar universal
Hi I feel I'm going through the same thing my hormones seem to be changing constantly! Although not had blood work in a couple of months am seeing Dr next week as having other problems that are being investigated so am going to ask her to test as haven't seen endorc specialist since March! Some months I feel ok...ish some months I feel absolutely awful! X
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Avatar universal
yeah, i've just gotten my latest bloodwork and my hormones are always changing- especially thyroid and sexual (estradiol, progesterone, testosterone) hormones! most of them are low though. it's a mess of 'i don't know what could be causing this' from doctors. let me know how you're doing and keep me posted! i know this can be a trying time, especially the nerves of not knowing what's wrong with you and just wanting it sorted!! xx
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Avatar universal
I was also put on pill but when I came off the side effects were horrific don't think I'll ever take them again! Please keep me up posted with you're out come and journey! Positive vibes to u too x
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Avatar universal
i suffer from the same, and high dhea and used to have high testosterone too, although they put me on birth control pills and now my testosterone has improved into normal limits, sometimes even a bit low! they've taken me off birth control to do these tests though. here's to hoping they find what's going on with us. my good thoughts and positive vibes are with you! <3
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Avatar universal
Hi I am waiting for Acth stim but only because I pushed for it, I have very similar symptoms but my dheas is high so is testosterone! i suffer nausea headaches, hypoglycaemia etc
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Avatar universal
sorry, meant to say DHEA is elevated, not low
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