1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
Discuss the article on the Forums.

Adrenal Insufficiency Testing?

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

  1. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    My ACTH a week ago was 7. Look forward to todays ACTH result.
  2. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    Posting just so this thread can be a good resource long term for those looking into Adrenal issues.

    http://www.stopthethyroidmadness.com/acth-stim/

    Written by Chris Jackson March 8, 2006
    Keep in mind these are my opinions and I’m not a doctor.
    The acth stimulation test measures how well your adrenals can respond to stress by testing the amount of cortisol the adrenals produce after being stimulated by synthetic form of ACTH
    (acth is a pituitary hormone which stimulates cortisol production).
    This is a simple test. Your blood is taken to get a starting or base cortisol level (serum acth should also be tested), then you are injected with the synthetic acth (synacthen or cortrosyn). Usually, your blood is taken again at 30 min, sometimes 45 min, and at 60 minutes after the synthetic acth has been injected. The test must be done for at least 60 minutes.
    In healthy adrenals, the cortisol level should double within 60 minutes. For example, if the cortisol level was a 25 before the stim (base level), then after the stim should reach at least 50.
    In primary adrenal insufficiency, the base level usually starts at least a little lower, like 15 (can be much lower) which is the most common number I see and acth stim might raise cortisol level to 20, which would not be doubling and thus support the diagnosis of primary adrenal insufficiency.
    In secondary adrenal insufficiency, the base cortisol can double from a low base value and I’ve seen tripling, quadrupling, quintupling (5 stimming to 25, 6 stimming to 30), sextupling (4 stimming to 24, 5 stimming to 30), septupling (0.7 stimming to 4.9) and decupling (2 stimming to 20, 2.7 stimming to 27.6) and recently a stim that almost tridecupled (1.25 – 16 went up 12.8 times) and a stim that quadecupled (went up 14 times 1.7 stimming to 24, after 1 1/2 hours reached 27.5 for sexdecupling). These examples illustrate how extreme secondaries stims can be. Most secondaries only double or triple and usually start with a base cortisol value of at least 10. The base cortisol can be very low because of the bodies lack of natural acth. When the synthetic acth is given in the stim test, the patients adrenals go hog wild because they can work, just not getting enough ACTH from the pituitary gland.
    Some people have reported their first acth stim doubled or more from a low number and then another acth stim done later, the test suggested they are really primary (stim didn’t even double). I’ve seen many say their doc changed their diagnosis from secondary to primary “I guess you were primary the whole time”. In secondaries, if the adrenals lack acth stimulation for enough time, the adrenals cortisol production can atrophy, thus no longer rise in an acth stim with serum acth being in the lower half of the range. So arguably that would be a combination of primary and secondary, but is more correct to continue with the secondary AI diagnosis.
    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, or find any good doc here.
    In primaries, ACTH serum will be at the top of the range or above range, sometimes way above as I’ve seen a few acth serums that were in the hundreds and a handful in the 1000′s.
    In secondaries, serum ACTH will usually be in the bottom half of the range to the very bottom, but not usually below the range (98% of secondaries are in range on the serum acth). I have seen a few secondaries (going by stims doubling or more from low base number to indicate they are secondary) whose serum acth was just above the middle of the range or as high as the 40′s. Again, I like to see it in the upper third of the range (assuming a range of 10 – 60 as they almost always were until a couple of years ago), but now many different ranges are popping up and most are flawed to the lower end of the range ie. 5 – 27 which is the range where most secondaries test at in the serum acth test. Further proof that the labs get their ranges from the sick people who are given the test. In my opinion, acth ranges have become even more flawed compared to what they were before. If I were to draw up a healthy range for the serum acth, I think a range of 48-55 would likely be closer to healthy range.
  3. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    Ema will prolactin be high if there is prolactinoma? She said she looked at my pituitary from an MRI this past January and it looked ok although she did say the MRI was not focused on slicing the pituitary.
  4. Ema

    Ema Senior Member

    Messages:
    3,117
    Likes:
    3,186
    Midwest USA
    Yes, it will usually be high in the 100s (where the range ends in the 20s) but occasionally there can be a prolactinoma with a lower level in the 30s or 40s.

    You ideally need to have a 3 Tesla MRI to look at the pituitary. It's very hard to image the pituitary with a regular MRI and pituitary tumors are generally hard to find on imaging anyway. If you had a very large pituitary tumor, it might be visible on regular MRI but that would not be typical.

    Ema
    roxie60 likes this.
  5. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    I hate to admit my future rests on this test result having something of diagnostic value. If not I'm just going to have to accept for whatever reason they are not figuring it out, I know many others have had that happen so I know it is not fair but it is what it is.....If I pass this STIM test after the last two Coritsol tests then my body is a mystery.
  6. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    Ema caledonia rlc Well got some of the results back. Still waiting on ACTH but maybe you guys can weigh in on what found so far, my initial take is I will not get a diagnosis :cry: since my cortisol more than doubled.

    Cortisol baseline (around 1215A) 5.2 range 3.0-23.0
    Cortisol 30 min (12:45PM) 22.5 range >18
    Cortisol 60 min (1:20PM) 28.2 range >18

    Prolactin 10.8 range 2.8-29.2

    Waiting on ACTH and DHEA
  7. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    This is from above I posted so guess I really need to wait for the ACTH to really be able to draw a conclusion. I don't know if that is a low cortisol for that time of day but it says in range but I think that is the same ranges as the 7-8AM cortisol. On 8/14/13 my ACTH was at 7 (below range).

    Most secondaries only double or triple and usually start with a base cortisol value of at least 10. The base cortisol can be very low because of the bodies lack of natural acth. When the synthetic acth is given in the stim test, the patients adrenals go hog wild because they can work, just not getting enough ACTH from the pituitary gland.
  8. Ema

    Ema Senior Member

    Messages:
    3,117
    Likes:
    3,186
    Midwest USA
    Your future can't depend on a test that was not done properly. That would be totally unfair!

    I'm really sorry. This was about the worst possible result. Low baseline cortisol but you did show a rather robust response - but still lower than a healthy person would make - when you adrenals were hit by more ACTH than you could ever hope to make.

    I would not call this a pass but I am afraid that your endo will.

    I would insist that a properly administered test be done. I don't know if you can diplomatically make that happen with this doctor because you are going to have to tell her she did it wrong in the process and doctors are usually not receptive to hearing those types of things.

    Yes, having low ACTH will make secondary look more likely. An experienced endo would either try you on HC or would possibly arrange for a low dose stim test (if performed at any teaching hospitals nearby) for a better idea. Hopefully your doctor will do this otherwise you will have to look for another one.

    Stay strong!
  9. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    One day left. I sit here on my couch and I have those nerve explosions / vibrating / muscle spasms sensation from feet to head (but not including head). I was able to do a few tasks this morning, felt better than in some time but by 2:30PM got very tired and had to rest.

    Never thought I would ever appreciate the cicada choir outside but it is similar to the tinnitus in my head so for now it is though I dont have tinnitus (still annoying but seems better since sound is outside my head). I have had constant tinnitus since January 2009. So I am not a picture of health but sit hear wondering if I can once again try to go back to work, even part time. I'm not confident the ACTH will come back low (although it was low last week).

    During this STIM test I believe they took ACTH at baseline. I presume they did not do another ACTH since they were adding synthetic ACTH to my system, is my presumption correct, ACTH only tested at baseline? Just did not seem logical to me that they would test ACTH again if artificially stimulating adrenals w/ ACTH. Maybe I'm wrong.

    BTW, my GP's nurse read the letter she wrote to my company to request more time, it was such a nice letter. She really is a caring doctor.
  10. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    243
    Hi Roxie, my understanding is that in healthy people Cortisol results will double with ACTH stim test, in primary AI the results are less than double, in secondary AI, which your initial blood tests indicated, results can more than double, this is because the adreanals are intact but have not been receiving ACTH due to damage to pituitary, so when they suddenly get a big dose of synthetic ACTH in the tests they can go haywire and produce lots of Cortisol.

    It’s not about the numbers and ranges, it’s about if Cortisol results fail to double or more than double with the ACTH test.

    This is explained here http://en.wikipedia.org/wiki/ACTH_stimulation_test#Interpretation_of_results

    “ACTH may dramatically stimulate cortisol from the low baseline value encountered in patients suffering from secondary adrenal insufficiency. Stimulation resulting in a greater than 14-fold increase in serum concentration over 30 minutes has been reported, although more typically serum cortisol levels will double or triple from baseline. The lower the baseline cortisol, the more likely it is that the patient's cortisol will increase by a large amount.[15]

    Your results show

    Baseline 5.2

    After 30 mins 22.5

    After 60 mins 28.2

    For normal results your Cortisol should have doubled from 5.2 to 10.4, it hasn’t it is 28.2 it is over five times higher, from my understanding this should be considered as possible secondary AI.

    When the other tests results come in it should help to provide a clearer picture.

    All the best
    roxie60 likes this.
  11. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    Thinking about how it looks like I'm going to fall between the medical cracks again and found this list of symps related to low cortisol, I high light my expereinces

    Symptoms of low cortisol

    The following list, also found in the revised STTM book with more detail, is a compilation of symptoms experienced by patients with adrenal issues. And they point to high cortisol, low cortisol, or often a combination of both. These can also be found or exasperated while raising natural desiccated thyroid or T3, and can occur at low doses of desiccated thyroid or T3, or waited until the patient got as high as 3 grains and more. They are in no particular order, and you can have some and not others:
    • continuing hypothyroid symptoms with a high free T3
    • shaky hands; shakiness (not all the time, occasional)
    • diarrhea
    • bad palps
    • higher heart rate
    • pounding heart
    • feeling of panic
    • weakness
    • inability to handle stress
    • inability to handle interactions with others
    • inability to focus
    • rage or sudden angry outbursts
    • emotionally hyper sensitive
    • overreacting
    • highly defensive
    • feeling paranoid about people or things
    • exacerbated reactions to daily stress
    • no patience
    • easily irritated
    • mild to severe hypoglycemic episodes
    • nausea in the face of stress
    • taking days to recover from even minor stress
    • taking days to recover from a dental visit
    • flu-like symptoms
    • headache
    • all over body ache
    • super-sensitive skin
    • extreme fatigue (not constant, unpredictable, after exertion)
    • scalp ache
    • hyper feeling
    • jittery
    • clumsy (drop things, bump into things)
    • confusion
    • suddenly feel extremely hungry
    • low back pain
    • dull
    • cloud-filled head (happens when this patient is due for a next cortisol dose)
    • jumpiness
    • muscle weakness
    • “air hunger”
    • dizziness (occasionally)
    • light headedness (same as woozy brain, brain fog??)
    • motion sickness
    • coffee putting patient to sleep
    • vomiting even running up the slightest incline
    • almost passing out every time patient gets up
    • dark circles under my eyes
    • waking up in the middle of the night for several hours
    • difficulty falling asleep
    • frequent urination
    • IBS symptoms
    • worsening allergies
    If you have any of the above, it is highly recommended that you confirm sluggish adrenals with Discovery Steps One and Two found on the Adrenal-info page or Chapter Five in the STTM book with more in the list, and doing the 24 hour adrenal saliva test, which we have found to give far more important information than a one-time blood test or a urine test. The ACTH STIM may be good to detect if you have a pituitary problem, but may fail you to detect the kind of adrenal dysfunction that many hypothyroid patients have. It’s also recommended that you try to find a doctor who will be open minded about adrenal treatment.
  12. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    thx for the replies and the wiki link. Ema mentioned the test was not administered properly. I can see that in this prep from the wiki. I did not fast and the test was started about lunch time. So since I did not fast and it was lunch time I'm wondering what the potential impact on my results would be?
    from the wiki link provided above:
    Preparation

    The person must fast at least 8 hours before the test which should be started by 10 am, but as close to 7 am as possible. The test shouldn't be given if on glucocorticoids, or adrenal extract supplement as these will affect test results. Stress and recently administered radioisotope scans[citation needed] can artificially increase levels and may invalidate test results. Spironolactone, contraceptives, licorice, estrogen, androgen (including DHEA) and progesterone therapy may also affect both aldosterone and cortisol stimulation test results. To stimulate aldosterone, consumption of salt should be reduced to a minimum and foods high in sodium avoided for 24 hours prior to testing. Women should ideally undergo testing during the first week of their menstrual cycle as aldosterone (and occasionally cortisol) may be falsely elevated in the luteal cycle secondary to progesterone inhibition, leading to a compensatory rise in aldosterone levels.[11]
  13. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    I am also on estridiol (since April) and I just started progesterone .05ml on 8/20/13 which is after the last two tests that showed cortisol at 3.7 and 2.1. This time it was at 5.2 (I think this is saying cortisol can rise if on HRT, if true didnt raise it much o_O )
  14. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    thx rlc I did not key in on this point

    It’s not about the numbers and ranges, it’s about if Cortisol results fail to double or more than double with the ACTH test.

    This is explained here http://en.wikipedia.org/wiki/ACTH_stimulation_test#Interpretation_of_results

    “ACTH may dramatically stimulate cortisol from the low baseline value encountered in patients suffering from secondary adrenal insufficiency. Stimulation resulting in a greater than 14-fold increase in serum concentration over 30 minutes has been reported, although more typically serum cortisol levels will double or triple from baseline. The lower the baseline cortisol, the more likely it is that the patient's cortisol will increase by a large amount.[15]
  15. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    Looks like this test result can vary, wiki suggests one time I could be considered secpndary AI and I could go back later have STIM done again and be dx primary AI (this is Addison's right?). No wonder our bodies make us feel like we are going crazy!:confused:
  16. Ema

    Ema Senior Member

    Messages:
    3,117
    Likes:
    3,186
    Midwest USA
    I agree with you for the most part, rlc, but it is also about the numbers.

    A baseline that low, and certainly her AM cortisol of 2.1 last week with an ACTH of 7, should have been considered diagnostic of AI all by itself.

    In a healthy person, the baseline should be around 20. The baseline should double from there. A 5 doubling to a 10 is still a fail.

    I agree with you that the results point to secondary. I just hope her endo paid attention on AI day in class.

    Ema
    roxie60 likes this.
  17. Ema

    Ema Senior Member

    Messages:
    3,117
    Likes:
    3,186
    Midwest USA
    It means that the results might not be reliable.
  18. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    My Endo told me she is a very good doctor ;) , guess we'll see. Gotta give her some points for being confident. I on the other hand after fighting 'this' illness of collection or illnesses have lost all my confidence. Once I start getting better I'm going to have to learn how to be confident again. Amazing how illness can affect a person on so many levels (physical, emotional, relational, confidence, etc)
  19. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    That is why it is imperative to have a place like Phoenix Rising to help you tie a knot in your life rope and get encouragement to hang on, to have people, strangers so willing to share their knowledge and try to provide a virtual paper trail for others to benefit from currently and later on !!!
    Valentijn likes this.
  20. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    Just read that the ACTH is very sensitive and needs to be handled properly. E.G the vile needs to be chilled prior to blood draw and chilled / rfozen immediately after. I know for a fact the ACTH's that were drawn were not chilled viles and after the blood draw they were put with the other viles which were not chilled. I am being stuck multiple times, I am paying to have these tests done, is it too much to ask they they understand the friggen requirements for each blood draw and follow them argh!:mad:

See more popular forum discussions.

Share This Page