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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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    I was thinking about my baseline Cortisol, since it was 5.2 at about 12N and my last two at 7AM were 3.7 and 2.1 I wonder if the Endo will think 5.2 is normal, but then as has been stated maybe for this test it doesn't matter, it only matters how Cortisol levels reacted to the STIM. I am awaiting the ACTH results. I'm hoping I dont have to wait thru the holiday weekend but I may have to. Can a normal (healthy) person's Cortisol drop from a normal of 20 at 7-8AM to 5 at 12N?
     
  2. roxie60

    roxie60 Senior Member

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    Ema rlc well bad news/good news? The Endo just called and left a msg saying my cortisol response was optimal that there is no adrenal insufficiency. That we could discuss some thyroid replacement to see if feel better. So what am I , we missing / misunderstanding that the doctor says there is no AI? This will not help my case but maybe thryoid replacement at small dose will help get me some energy. I guess she would want to be correct cause she even admitted if I had adrenal issues she would not want to treat me for thyroid until adrenal fixed. Really can I feel so ill, so tired and it just be subclinical hypothyroid?
     
  3. roxie60

    roxie60 Senior Member

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    Just got off phone with Dr. I got a surprise, she did not take an ACTH with the baseline Cortisol. She said it was not necessary. She said I had an optimal response (5-28) so my body can handle stress. She expressed that I should not worry about the exact results but just know that I had an 'optimal' response to the STIM test and my body should handle any stress. So she is going to treat me for subclinical hypothyroid for 60 days and see if that helps the symps. Blood work again in 8 weeks then see her in 9 weeks to review. Take tyroid med in AM on enpty stomach with water, nothing to eat for 30-45 mins.
     
  4. Ema

    Ema Senior Member

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    You have to go to another doctor.

    I am so sorry that you will have to go through this nightmare getting diagnosed. It won't make you feel any better, but it is a common story. You will find a doctor that gets it or is at least willing to learn if you are persistent.

    This one administered an improperly done stim test and does not know how to interpret the results that she did get. If you go into crisis, please leave instructions for your family to sue this doctor for all she is worth. I'm so mad at her right now!

    Get your results and move on...quickly.

    Thyroid replacement is a disaster for people with low cortisol. It can precipitate a crisis. You must have appropriate cortisol levels before taking thyroid hormone (which I also agree that you need in the future).

    You might even try to find a DO instead of an MD. Many of these practitioners are better at looking at the body as a whole.

    Ema
     
  5. Ema

    Ema Senior Member

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    Further proof she has no idea what she is doing in terms of administering a stim test..please run, don't walk (after getting copies of the labs).
     
  6. roxie60

    roxie60 Senior Member

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    She actually commented that there must have been something unusual about the prior two cortisol tests. When I asked about ACTH she basically told me not to worry my pretty little head that it was not necessary, she got all the info she needed form the STIM results. The other tests she is waiting on is DHEA (which was not an issue last time unlike ACTH which was low) and something called adrenal androgens(?), I think that is what she said, I'm not familiar with this one. I'm stunned no baseline ATCH taken I thought that was standard practice before a STIM to get an idea if the pituitary is involved. I guess since prolactin came back in range she doesnt feel there is a pituitary issue.
     
  7. roxie60

    roxie60 Senior Member

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    she got out of residency in Cleveland and came here in May. I would expect a new doctor to be up on all the current diagnostics and procedures. I hope this doesnt kill me. I did call my IH doctor (I call her my GP) and gave her the update and left msg asking if she had any concerns about me going on synthetic thyroid low dose. The Endo does like natural thyroid cause she cant be sure of its content being consistent? really the same stuff people been using for 100 years. Looks like the big pharma have brainwashed these kids.
     
  8. roxie60

    roxie60 Senior Member

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    I guess she doesn't think a 5.2 cortisol is low and for some reason is dismissing the last two cortisol tests as anomalies.
     
  9. Ema

    Ema Senior Member

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    It won't kill you. I'm sorry I wrote that in my frustration. It won't kill you because while your doctor may be unable to read a research study, you HAVE read them and know what is going on. If you get symptoms, you will immediately call 911 and take no chances.

    Can you tell your GP that you think it looks like secondary AI and that the stim test was administered improperly and that you need to try again with another endo?

    Ema
     
  10. roxie60

    roxie60 Senior Member

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    Comment from Stop The Maddness - Chris's ACTH comments I posted above

    The acth test is usually the final say in whether you have adrenal insufficiency, but most docs are looking for just Addison’s disease with the stim test. If the test does not show Addison’s (for example, in true Addison’s, the stim may start at 3 and rise to 4 or 6 rising to 8), then they see the stim as showing the adrenals are working. They fail to recognize any degree of adrenal insufficiency between Addison’s and healthy adrenal function. In others words, these docs see the adrenals as working or not working with no in between. I’ve seen reported docs only looking at how the stim doubled or more, not taking into consideration that the base number was very low and do not consider that the test reflects that their acth signal isn’t working. Some docs actually think tripling or more from a low base number is just terrific. Those docs don’t know what they are actually looking at.
    The serum ACTH test should always be given at the same time as the ACTH stimulation. This test measures how much acth the pituitary is making. Acth serum and acth stim together can give a clearer picture, especially if one is secondary. Some doctors think serum acth is not accurate, but I’ve seen well over 1000 of these tests and I believe serum acth is a very good test. Insist on this test and if your doc won’t give it to you, try another doc, preferrably an osteopath
     
  11. Ema

    Ema Senior Member

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    What do you know! Great minds think alike!
     
  12. roxie60

    roxie60 Senior Member

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    I feel I can tell her anything but will have to wait until the holiday weekend is over, she is not an oncall Dr. I did leave a msg telling her this endo doesn't believe I have AI. But I also know my gp does not hold Endos in high regard, I do not know why, maybe this is why, she has had patients with less than successful experiences. Still I need to try and maybe those other two Cortisol tests were anomallies (cant believe I'm actually saying it, but Im not believing it), maybe this doctor knows her stuff. I will need to go back and find the info on Adrenal crisis just to make sure I can recognize the symps, I think you posted it. This has turned out to be a good AI thread I think Ema, good I dea to separate it. I never thought it would turn into so much info in such a short time.
     
  13. Ema

    Ema Senior Member

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    None of the tests were anomalies. They are all consistent with secondary AI.

    Almost everyone goes through this nightmare getting diagnosed. You will get through it when you find a good doctor that will put you on HC immediately.
     
  14. roxie60

    roxie60 Senior Member

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    I appreciate everyone's help in all this.
     
  15. roxie60

    roxie60 Senior Member

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    The Endo actually told me it was I good thing that I did not need to go on a hormone for the adrenals.
     
  16. roxie60

    roxie60 Senior Member

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    Anyone know of an Endo in Central Illinois that does understand secondary AI and how to dx it?
     
  17. barbc56

    barbc56 Senior Member

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    Hi, Roxie. First, I don't know the ends and outs of your endo issues and I am not in the medical field, unless you count a first aid course I took. long ago.:rolleyes: I have some questions about your sleep apnea. OSA, can make many of our symptoms worse. I have no idea if the following pertains to you but just in case it's impacting some of your symptoms, I want to post this information. If you already know it, it might help someone else.

    Are you currently on a cpap/apap? I know compliance is difficult, been there, done that, but being on the cpap has made my symptoms better, relatively speaking. As my sleep neurologist so aptly puts it, I still have the damn fibro and the comorbid conditions that come with it. Sleep as we all know, is so closely tied to how we feel. IMPO we should all have a sleep study, but I'll save that for another post.

    The areas where I have noticed a difference are a decrease in morning depression and achiness, not as foggy and no morning headache as well as more energy during the day. Again relatively speaking. I take Nuvigil, which many people with sleep apnea take for daytime sleepiness. It does not hype me up, although caffeine does, and works most of the time. It makes me feel closer to normal, if that makes sense. I have also been known to take it and then sleep for another six hours, so I can imagine I would have slept longer without it. Since I am up for longer periods during the day, this makes it easier for me to fall asleep and stay asleep at night.

    In my case, I had no idea my breathing stopped 51 times per hour for ten seconds or more. No idea. Any apnea events over five per hour means you need to be treated. There are a lot of myths about sleep apnea such as you have to be overweight and while it's a risk factor, the majority of people with OSA are not obese. Some people don't even snore. OSA is structural and as you get older (not old) the muscles in your tongue become more lax and may end up blocking air from getting into your lungs, My dentist has always complained about my small mouth and how difficult it is to work on my teeth. I think this is the only time someone has said this.:rofl:

    Just a few more concerns and please keep in mind that this may not be contributing to your situation. If you are diagnosed with OSA and you are not compliant, this could be a factor when they decide whether disability is warranted. When I first went on the APAP, after three months, I had to take my machine to the doctor to read the data that the machine records to determine not only compliance but also if the number of apneas decrease. This was for insurance purposes and whether they would cover the costs. Usually you don't have to have it read again.

    Untreated OSA can lead to central sleep apnea where your brain doesn't always tell you to wake up and breath even if your airway is not blocked. If you are taking any medications that depress the central nervous system, it's a dangerous situation. OSA also contributes to heart problems, diabetes and in my case a low ferritin level which had to be treated with an IV infusion of iron. If I understand correctly and I don't know how accurate I am about the physiological reasons behind this, but less oxygen can cause anemia. Low ferritin is a form of anemia but not specific to OSA.

    As I said even with this treatment, I still qualify for disability. Do you know how many times you stopped breathing? The machines they have today are small, quiet. The type of mask I wear is called nasal pillows, which fit over my nostrils with a strap.

    Here is a great resource which from the American Sleep Association's Forum. I haven't posted a lot but the times I have the information has been very helpful, especially when I started with the APAP/ Also it's important that you get a sleep study in a lab as well with a doctor who is certified through the ?????. Can't think of the name but will come back later and edit.

    http://www.apneasupport.org

    Take care.

    ETA, where do you live in Illinois? I live in east central Illinois. PM me if you want.
     
  18. rlc

    rlc Senior Member

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    Hi Roxie, sorry to hear you are going through this, I recommend getting a second opinion from a new endo as soon as possible! New doctors can frequently have very poor knowledge of certain issues.

    My understanding is that Base line ACTH should have been done, and the test should have been done at the right time of day, the two failed Cortisol test and the failed ACTH test should not be being ignored.

    Yes your ACTH stim test rules out Addison’s, but it dosen’t rule out secondary AI, which is what your doc should have been looking for on the basis of the low Cortisol and ACTH tests.

    ACTH stim tests can be normal in secondary AI, the gold standard tests if there is doubt is the insulin induced hypoglycemia test AKA insulin tolerance test see http://www.uptodate.com/contents/insulin-induced-hypoglycemia-test the complete how to evaluate adrenal function and the tests for it are outlined here http://www.arupconsult.com/Algorithms/AdrenalInsufficiency.pdf

    As Ema says, Thyroid hormones can have a bad effect on people with AI, so I would advise getting a second opinion before considering taking them.

    Again sorry to hear this is all proving so difficult for you, I hope things work out soon for you!!!!

    All the best
     
  19. maryb

    maryb iherb code TAK122

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    :( And when you've found another endo maybe print out Ema and ric's advice (anonoymous of course) and send it to this one!!!!hopefully she'll learn something..............
     
  20. roxie60

    roxie60 Senior Member

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    Well I went to bed feeling a bit defeated but I think I was a bit anxious waiting for test results and doctors assessment so I had tapped my energy levels (sometimes I feel we are like the energizer bunny but when it is low on energy reserves and each movement is slow - haven't been at the fully charged level is years it seems). I was too tired again to fight her over the phone or stand up for myself (I tried to have a dialog but she seemed to want to dictate, be in control instead acting like we are working on this together, she made me feel I was just one of her lab rats she just conducted a test on, was confident in her conclusion and could care less about what the rat thinks - not a confidence building experience for me).

    I am fairly confident her STIM test ruled out Addison's and I'm graetful. But I am not confident secondary AI has been ruled out and additionally she did not seem to want to have a dialog about it. Now that I have a bit more recovery this AM (not much) I was asking myself some questions:

    Did she also rule out secondary AI and if so how did she rule it out with the tests she did this week?
    If she did not rule out secondary AI what is the risk of taking thyroid medication?

    Mind you I asked her if there might be any side affects to the synthetic thyroid medication and she said there would be none (my spidy senses immediately went off on that comment), "it's synthetic". Every time I hear those words I'm reminded of the times spent over the porcelain throne retching because a surgeon said "hydrocodin is a synthetic form of codeine, you wont have any troubles with it".

    She also said she would not prescribe a 'natural' thyroid medicine (I presume this is the dessicated version I see people here refer to) that the contents were inconsistent whereas the synthetic she knew exactly what I was getting in the dose.

    She also commented she did not know how "all those vitamins and supplements you take might be affecting your cortisol, how you feel, maybe you are reacting to some of them".
     

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