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Adrenal Insufficiency Testing?

Discussion in 'Adrenal Dysfunction' started by roxie60, Aug 5, 2013.

  1. roxie60

    roxie60 Senior Member

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    Answered my own question - yep it appears the stim test is the only true test to confirm AI. Can someone fall in and out of AI if it is just developing? In other words the adrenals can sometimes still function and indicate normal results in testing? Also according to this doc once one starts on treatment for AI it is for life because it makes it impossible for ones own adrenals to function. Is there something other than synthetic options for treatment of AI, like natural options for thryroid? Can one recover from AI without using synthetics?

    http://www.endocrinology.org/policy/docs/11-03_adrenal insufficiency.pdf
     
  2. rlc

    rlc Senior Member

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    Hi Roxie, because your levels are so low I doubt you will have any trouble with an indeterminate ACTH stim tests. The medication is normally for life, this is nothing to worry about once the right dosage is achieved it is only replacing the adrenal hormones that would be there naturally. I know two people with it and they now live totally normal lives. The meds have to be taken, there are no natural products that will guarantee the normal adrenal hormone levels which are needed to stay alive.

    Take care

    All the best
     
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  3. roxie60

    roxie60 Senior Member

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    For those interested in genetics. Rs3087456 the risk allele appears to be G. I am AG. I am curious Ema what your alleles are if you wish to share. I am always wanting to try and line up the science with real life experience.

    http://www.ncbi.nlm.nih.gov/pubmed/16849401?dopt=AbstractPlus

    looks like also associated with genes HLA-DQA1 and HLA-DR?? but have not found the specific research report on these genes / SNPs and the risk alleles
     
  4. Ema

    Ema Senior Member

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    I really don't think you have to worry about passing the stim test. But since it only catches about 50% of those with secondary, I suppose there is a miniscule chance you might pass once your adrenals are hit with 1000x the ACTH your body could ever produce naturally.

    The low dose is supposedly better for catching secondary but it requires dilution and special preparation and it is hardly ever done outside the research setting. I would not hold up the process for a low dose test because I truly think you will fail either.

    I had the high dose test.

    No, there is no replacement other than taking the replacement hormones. Think of it like diabetes of the pancreas. You wouldn't hesitate to take insulin if you weren't making any, would you? You wouldn't try to treat type 1 diabetes with herbs because you might die! Same thing with Addison's.

    Try to keep your anger focused right now because you still have a ways to go in the process and will need your wits about you. There will be plenty of time to discuss the crap medical system and endos once you are diagnosed (and they are crap).

    Now you need a stim test. No matter what, don't leave that endos office next week without an order. Just keep your eye on the goal and you will get what you need. You're getting there!

    Ema[/quote]
     
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  5. Ema

    Ema Senior Member

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    I'll look it up.
     
  6. Ema

    Ema Senior Member

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    It's AA which makes sense given that I was able to (at least temporarily!) come off steroids once I got the infections causing HPA axis dysregulation under better control.

    Interesting! I don't know much about 23andme results...

    Ema
     
  7. roxie60

    roxie60 Senior Member

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    so infections caused your AI? interesting

    I have often been put on steroids in the past to help my body get over infections

    This it what baffles me, today first time in weeks I am feel a bit less fatigued (although all I have done is sit at the computer but i could not do that for more than 30 mins these past few weeks w//o putting my head in my hands and or strong need to lay down). So I am wondering can AI / hypothyroid fluctuate that much day to day.
     
  8. roxie60

    roxie60 Senior Member

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    what should i bring to endo mtg? im so tired of talking about my symps. i have seen some improvement in fatigue last few days, figures, no wonder they probably think i am lying. over 4 weeks of bone crushing fatigue and now last few days less fatigue (20-30% more function at times during day, my gauge is how many more chores and length of time doing tasks). I still do not feel well, very tired, it sounds crazy just reading it back to myself. I suspect a change / improvement in cortisol, thyroid and adrenals. Is this what others have experienced, weeks of dysfunction peppered with some improved days/hours but unpredictable?
     
  9. roxie60

    roxie60 Senior Member

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    I need to go grocery shopping before it gets too hot (I seem to lose even more strength wen I'm hot, cant seem to control body temp) but I am exhausted, headache.
     
  10. roxie60

    roxie60 Senior Member

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    never made it to grocery store, felt sick all day, all I got done was to tak garbage to curb. Did a little more research via some videos. Would not be surpirsed if I am found to have Hashimotos. Helps explain why so many times my blood did not show any concern cause it can change so much day by day. I sure hope this new Endo really knows her stuff and just doesnt treat by labs only. I really dont want to be disappointed by medicos again.
     
  11. Ema

    Ema Senior Member

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    If autoimmune disease, it can be cyclical as antibodies flare but typically AI is just a descent into hell before getting treated.

    You will have to be your own best advocate forever moving forward since this disease is so serious and relatively rare. Most endos only deal with diabetes and have never had an Addisons patient. So it will be up to you to know your condition and needs and find a great doctor to work with on getting your replacement right. I hate to be discouraging about endos but I don't know anyone in my AI group that is happy seeing an endo. Most have given up in favor of functional med doctors that look at the body as a whole.

    But that is all for the future. This week you just have to get a stim test ordered from this endo. I would take your labs esp the most recent AM cortisol and possibly the Arlt article I posted. It should be a no brainer and I hope for your sake that it is smooth sailing.
     
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  12. roxie60

    roxie60 Senior Member

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    the Arlt article I posted. ???

    did you post this in this thread?
     
  13. Ema

    Ema Senior Member

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    I can't remember which of your threads. It was the one where you had to divide by 27 to get the American units. I would try to help you find it but I only have my phone right now.
     
  14. Ema

    Ema Senior Member

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  15. roxie60

    roxie60 Senior Member

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    found it, printed it.
     
  16. roxie60

    roxie60 Senior Member

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  17. bertiedog

    bertiedog Senior Member

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    Not had time to read all the thread but thought it might be useful to mention Sheehan's Syndrome which can cause havoc not only with the adrenals but also with the thyroid and female sex hormones. I think it is a strong possibility that it was this big blood loss immediately after childbirth that caused my problems from the late 70s onwards but I didn't get any treatment until 2002.

    I didn't do well on hydrocortisone and take 6mg Prednisolone daily plus just 2.5 mg h/c top-up around 4 pm as well as low dose estrogel and 2 1/2 grains Nature Thyroid. I hope you get some proper treatment. BTW I didn't ever have the ACTH test done, because it was a private doctor who diagnosed me on my history, saliva test results and blood tests for the thyroid.

    Pam
     
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  18. roxie60

    roxie60 Senior Member

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    Just back from Endo and want to write all I can remember said before it disappears into the black hole that is my brain. She asked a ton of questions, it appears she had looked at my records prior and during the time there. She checked eyes. She said pituitary looked ok on the January MRI, she did not think any of the supps and med currently taking would affect cortisol. She kept mentioning Biotin? so I need to ck my multivit to see if it has that. apparently that can affect cortisol. After she reviewed my records I think she is dismissing my thyroid, she said the FT3 and FT4 levels were fine and the TSH 'maybe' elevated due to the estrogen treatment I have been on since April. I then asked would that make me more fatigued and she said no so that still a mystery.

    She acknowledged last two Cortisol were low. Did a stimm test today (I did not want to wait if no good reason to). They took a baseline Cortisol, and I think the other two were DHEA and ACTH but not sure. She also took a Prolactin? then they gave me Cortrosyn(sp?) and took another Cortisol 30 mins later. Then 1 hour later took another Cortisol, DHEA and ACTH? Sadly I am feeling like once again everything will come back normal but that is probably becuase that is usually what happens. She rulled out Primary AI already (said I would be in hospital if I had that). So this test I guess is to verify secondary AI. She said if it comes back low (double the Cortisol basline?) then she would trat with hydrocortizone(?) .

    My concern is I did feel slightly better today but this test should be definitive regardless of how I feel. She also emphasized using the CPAP regularly. That is all I can remember. I think I have a bug so she initially was going to have me come back but I said I want to move forward with the tests. Honestly, if this doesnt show anything I dont know what Ill do. I just dont get it, I can feel so ill, fatigued ect and nothing reallly able to explain. It is in God s hands at this point.
     
  19. Ema

    Ema Senior Member

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    Sounds like a typical endo visit unfortunately.

    A stim test needs to be done at 8AM (between 7-9AM). Hopefully this will work in your favor though since your level should be even lower as the day progresses. Though there are some studies that indicate that adrenal sensitivity is greater in the afternoon. And you should have an IV line because the draw itself can influence the result. Were you at least fasting? But anyway, it is good that she did it and that is a good first step.

    Her reasoning about primary AI is faulty. But I actually agree that you are most likely secondary so why argue with her.

    Here is the biggest thing that you need to remember:

    Cortisol should be around 20 at 8AM and to successfully pass a stim test it should double to about 40. This means that if you start at 2 and double to 4, it is a FAIL. That is not a pass even though it doubled. Even if you start at 6 and double to 12, that is still a fail. It never ceases to amaze me how many doctors miss this important part about the baseline doubling. The baseline needs to be sufficient to start with!

    Make sure you get copies of all the labwork just in case you have to find another doctor. That is what you will do if this one proves not to know anything about AI. I saw two endos before I found one that understood AI. She's already shown she knows nothing about thyroid. It's a process to find the right doctor. Hardly anyone stumbles upon a good one the first time out but you got a stim test (albeit inappropriately timed/performed which also calls her skill into question). Now just hang in there and see what the results show. When are you supposed to get the results?

    Do you have sleep apnea?
     
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  20. roxie60

    roxie60 Senior Member

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    It was an IV, well that is what they called it - the nurse hit the vein that had an attachment so she could put a suringe in (I did not watch much as I get queazy), first she pushed saline through, then the Cortizyn? then pushed more saline, one after the other. Blood was taken out of other arm for baseline, and the two additional draws at 30 and 60 mins. I asked about this needing to be done in the AM and was told since there was a baseline that they would just multiply? the results so AM test not necessary, it would be apples to apples because of the baseline blood values taken just before Stim test. Just reporting what told and happened. Appreciate feedback since I have no clue, this is new experience with Endo. I will say my integrative doctor did not seem optimistic but flt I should see an Endo just because of the cortisol and TSH.
     

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