Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Cort stim test results and question...

Discussion in 'General ME/CFS Discussion' started by kelly8, Nov 3, 2017.

  1. kelly8

    kelly8

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    I'm hoping someone here will have more knowledge with this than I do. It took me a while but I got a cort stim test to see if my adrenals are causing my fatigue. I have an adrenal tumor that is around one of my adrenal glands. I've been having fatigue since an illness in 2008.

    One of the symptoms of my fatigue is that if I stop moving and "rest" at all I start to fall asleep. I would sleep all day if I wasn't dragged out of bed each morning by my two year old and my hubby. While I was having the test i was hooked up to an iv. So I wasn't moving a lot. As they were stimulating my adrenals I actually started to fall asleep.

    I would imagine that when your adrenals are stimulated with cortisol that you wouldn't be overcome with sleep but I was. My values are as follows: 11.2 at 9:20am, 16.7 at 9:40am, 19 at 10:10am. I also was the first patient the nurse had ever seen who got nauseas during the injection.

    So I'm wondering. Is it possible that my body isn't responding to the cortisol? I mean the value went up but maybe some receptor somewhere isn't receiving it? I'm just trying to figure out why I would feel more tired to the point of being groggy and feeling like I was hitting rem type sleep. I'm hoping someone has been through this and might have some insight. Any thoughts would be appreciated...

    Thank you!
    Kelly
     
    Isaiah 58:11 likes this.
  2. drob31

    drob31 Senior Member

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    I know high cortisol can leave you tired but wired. There may be more hormones at play here, such as high cortisol causing issues with thyroid hormone as well.
     
    bertiedog likes this.
  3. ukxmrv

    ukxmrv Senior Member

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  4. Learner1

    Learner1 Professional Patient

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    I had the same test a couple of weeks ago, with very similar results:

    CORTISOL 12.2 ug/dL ug/dL
    8am normal: 8.7 - 22 ug/dL
    4pm normal: <10 ug/dL

    CORTISL,30M P STM 16.8 ug/dL 18.0 - 47.0 ug/dL

    CORTISL,60M P STM 18.3 ug/dL 18.0 - 47.0 ug/dL

    The endocrinologist emailed me and said it was normal, which was odd as I was crashed in a heap during the entire test, having been instructed not to take my usual hydrocortisone, and couldn't function until 20 minutes after I took 10mg of hydrocortisone after the test. :bang-head:

    I'm thinking he meant I don't have Addisons disease...

    My CFS doc says this wasn't normal that my adrenal function is suppressed, but I still haven't gotten a good explanation of what these results mean.

    Does anyone know who can interpret for @kelly8 and me?
     
  5. kelly8

    kelly8

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    Hi @ukxmrv .
    Thank you for your reply. I'm a bit confused because I've never heard of synacthen before. I had two tests. I'm not sure what the first one is called but I took a pill the night before and it basically shut off my adrenals. I was a hot mess the next day when I had to drive in to have my levels tested.
    The second test was supposed to stimulate the adrenals. Here they call it a cort stim (cortisol simulation) test. I know they used a naturally occurring steroid from the body. It sounds similar but the result numbers seem to high. On that site it said 420 was considered normal ours it seemed to be under 25.
     
  6. kelly8

    kelly8

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    @Learner1 ... I know right? I couldn't stay awake and the nurse kept saying I could have my coffee when I was done. She was actually giving me a count down the whole time. As soon as I was done I felt like a druggie because I had to go immediately to the bathroom and load up on all my supps plus my steroid medications. I'm wondering if maybe I'm having a problem with the receptors in the brain for cortisol. I can't quite figure out why else I would be passing out like that when my adrenals are pumping cortisol...
     
  7. Learner1

    Learner1 Professional Patient

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    Actually, I had coffee that morning so I could get myself there. And I made it all the way there before collapsing in the lobby. Another patient had to help me to the bathroom, then I was passed out on the lobby floor which disturbed them greatly. I kept mumbling, "I just have to take this test and then I can take my hydrocortisone and I'll be fine...":sleep:

    I got nauseous, too.

    Did they tell you not to drink coffee? Do you supposed it improved my performance on the test?;)

    Interesting that our results were so similar...
     
  8. kelly8

    kelly8

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    @Learner1 , I got so nauseas! It was awful. The nurse told me she had never seen that happen before. Although I don't trust her. She had to stab me three times to get the iv in. She also kept saying that she could do these tests all day but the Drs don't understand that you don't have to do them all in the am :bang-head:. Yup the Drs don't understand. :meh: once she realized I wasn't going to yak she left the room while I was passing out. Ridiculous.
     
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  9. bertiedog

    bertiedog Senior Member

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    It looks to me as if your adrenals are obviously still producing cortisol when stimulated but not in sufficient quantities to give you any sort of a normal life. @Learner1 The one first thing in the morning is supposed to be the most important because it is that one that is supposed to give you the get up and go to start the day. It probably should be in the top third of the range in order to feel good. Yours is nothing like that.

    Probably as you say there is an HPA axis problem also and the messages for more cortisol and maybe your other hormones too are not being sent from the pituitary. Things like heavy metals can do this to the pituitary.

    I guess that if this had been an integrative doctor that you saw they would treat you differently because they would be looking at your SYMPTOMS during the test and how you reacted afterwards and would see that something is very obviously not right as your levels as way too low, either bottom of the range or towards the bottom plus you felt so ill and actually collapsed after which is hardly normal!

    I also have adrenals that just about function but not enough to lead any sort of life and I have been on Prednisolone 6 mg since 2003. Once I came off it after a period of great stress which was sufficient to rev up my cortisol output for a while and it seemed as if I could manage without the meds. But within 2 months I was in real trouble and ended up having 2 crises with uncontrollable vomitting and diahorea from which I collapsed and couldn't get off the floor as everything was black. It was a horrendous experience and if I had been on my own I think I could have died.

    That was in 2006 and I knew then I could never come off the steroid. However again if I am ever under extreme stress which happened to me recently my adrenals again pick up for a very short time and I have to cut my dose in half for a short while but it wasn't long before horrible symptoms started. I wasn't able to control my blood sugar for instance and had a lot more pain and also couldn't stay asleep at night, It was horrible.

    Gradually I have been able to go back to my normal dose of steroid and also my thyroid medication. When my adrenals were shunting out some cortisol I couldn't tolerate my normal dessicated thyroid meds either and had to cut them in half but thankfully now after more than 6 weeks everything is back to normal and I am feeling a lot better.

    From my experience the attitude of traditional doctors to adrenal function just isn't right. They have some sort of arbitrary measure as to what is normal and what isn't without paying attention to what your symptoms are. It's as if they are happy to wait until you are at Addisons level and then are happy to treat you but by then you are so seriously ill it can be life threatening. Makes no sense to me at all and I am very grateful that I found a private Endocrinologist who was willing to treat me going by my symptoms, history and cortisol/DHEA test results.

    If you feel better taking h/c on a regular basis then you probably do need it and looking at your results I would say they prove this too.

    Pam
     
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  10. Learner1

    Learner1 Professional Patient

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    Thanks for taking a look. So, would normal look something like 17, 32, 40 then, rather than 12, 16, 18?

    I have multiple chronic infections affecting my HPA axis, got rid of the metals.

    I was on 30mg a day of HC a few months ago down to 20-25. I think I'll stay on it. Sounds like my naturopath does a better job than the endocrinologist.
     
    kelly8 likes this.
  11. ukxmrv

    ukxmrv Senior Member

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    Hi Kelly,

    I've had the short synacten test (the one in the link I posted) but not one with a pill the night before.

    What happened to me is that I was told not to eat or drink anything apart from a little water on the day of the test. When I arrived at the hospital in the morning they took a blood test, then gave me an injection and then took further bloods (I have forgotten how many and what intervals).

    The 2nd one could be the same one I had but given different labs in different counties the range is not the same.

    Every single morning for the past 30+ years since I developed ME (viral onset) I have wakened up very nauseous, shaking. low BP, black spots in front of my eyes and weak. The morning of the test I felt the same. With a short time of the injection I started feeling better, the nausea lifted and I felt well. This was unusual as I had nothing to eat and no coffee to drink.

    My initial blood test showed a low normal cortisol level and then a low normal response they said (I think but would need to go back and look again)
     
    Last edited: Nov 5, 2017
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