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High cortisol / cushings

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Tutu123
Tutu123

Hi, I am looking for some advice.

Suffered with chronic fatigue for eight years and been on thryoid medication (levothyroxine and also tried liothyonine for some of that time).

I recently had an overnight dexamethasone suppression test as my random cortisol levels were very high and this one also came back abnormal (59 but they didn't give me the ranges).

They said that as the cortisol levels weren't sufficiently suppressed, they also want to run low dose and high dose dexamethasone suppression tests to exclude excess cortisol from the investigations.

Does anyone know about these cortisol tests and why they would do a high and low dose test? They don't ever explain anything and I just get sent a letter in the post. Im hoping this doesn't indicate I have cushings disease- my doctor wasn't concerned by the result but the endo was, so now I am confused!

Any help or advice would be appreciated

Thanks

0 likes, 7 replies

7 Replies

  • LAHs
    LAHs Tutu123

    Posted

    Ask them to re-test your cortisol and ask them to do the saliva test. This gives a much better profile of your cortisol variation throughout the day. It could be high in the morning but perfectly OK during the rest of the day. But rather than speculate, get a retest because the dexamethasone suppression test you had is a bit rough and ready, the saliva test is better.
    • Tutu123
      Tutu123 LAHs

      Posted

      Hi LAHS, I asked my doctor about a saliva test the first time and he said he hadn't heard of it (maybe the endo will have or not something they want to do on NHS). I looked online and it looks like the next tests are a combination of blood and urine tests but I could be wrong.
    • LAHs
      LAHs Tutu123

      Posted

      Wow, I didnt expect that. What you do is take home 4 or 6 small test tubes any you spit into them every 4 - 6 hours (marking the time on the TT) from dawn to just before you sleep. They analyse these for cortisol levels then draw a graph of the results and you see two maxima on it: first thing in the morning (that's the time when cortisol gives you the energy to get up), then it sinks just before lunch (it has used itself up carrying you from breakfast to lunch), It will then peak again mid afternoon (I don't know why), and you will then see a decline until bed time (when it just lets you relax throughout the evening down to sleep). I am sure if you Googled this you could get a better description to show your doc. Private analytical labs do this routinely maybe you could draw your docs attention to this. Actually, I find that a doc who is interested in the endocrine system and willing to learn is far better than an endo who only knows about the T4/TSH relationship.
  • shellyC19
    shellyC19 Tutu123

    Posted

    Hello Caz:

    It is nurse Shelly here.  I know about this, and many of years ago I was tested for this to rule out Cushing's.

    The adrenal glands make cortsiol and in the morning it should be the highest and then taper down in the day.

    You take the Dexamethasone tablet and then they draw blood at intervals.  If you have too much cortsiol in you it can indicate Cushing's Syndrome and too little is Addison's Disease.

    The USA blood cortsiol should be 5-23 mcg/dl and UK cortisol is 2.3 -19.4.  (they use a different testing methood).

    Now if you have Diabetes or the start of it this can cause Cortisol problems. Also some meds you may take can bother Cortisol levels and get ready for this LEVO can bother the cortisol level.

    So I would suspect that first if you know what I mean.  I helped a lady on this forum who had to go on to NDT because LEVO was doing it.

    Keep me posted on how you do, any questions feel free to ask.

    Shelly

    • Tutu123
      Tutu123 shellyC19

      Posted

      Hi shelly thanks for that info.

      Yes I had researched that cortisol can be linked to blood sugar and it did make me wonder as although I have already been tested for diabetes, doctors are frequently asking me about this due to additional symptoms I have of going to the loo a lot and being thirsty all the time.

      I saw that cushings can give similar symptoms to hypothyroidism which I thought was interesting- maybe this could be the missing link?! I didn't realise levothyroxine affected cortisol levels- it will be interesting to see if the levels decrease once I am off it (I am down to just 50mg now).

      My Gp wasn't that concerned by my result, he said people with cushings usually produce results of 200+, but he said it was possible I might have it to a minor degree. Will let you know what the next round of tests come back with.

      With the lady you spoke about, how did they know the levothyroxine was causing the cortisol levels to rise? Was it by eliminating the causes of cushings first?

      Thanks

    • shellyC19
      shellyC19 Tutu123

      Posted

      Hello Caz:

      Cushing's can act like Hypothyroidism.  The truth is Cushing's is kind of rare to happen.

      True you do make huge levels of Cortisol, like your doctor said.  You also get a "moon face" which is a rounded face and it is puffy.  It is very noticeable and a symptom that would show up.  Also weight gain makes you very heavy and kind of like a big round shape, muscle aches.  It does share symptoms with Thyroid problems.

      The woman I was helping was able to have her doctor try different things and she had MRI's to rule out any growths on the adrenal gland. She also had a 24 hour urine, Dexamethasone test etc...then her doctor took her off LEVO she was on a high dose of Levo too,  and her levels went back to normal and she went onto NDT (Armour Thyroid).

      Most doctor's in Endocrinology will test for Cushing's first, and then rule out that, move on to another test to figure out what is happening.

      Diabetes can be borderline at times and can cause increased thirst, sleepy feelings, weight gain, lot's of urination, headaches. These are the most common ones.  You may want to buy in the Pharmacy a blood sugar meter and some are free from certain companies, and test yourself before a meal and the 2 hours after a meal. Normal blood glucose USA ref. ranges: 80-120mg.  Anything above that is borderline adult onset Type 2 Diabetes.

      Sometimes, it is as simple as changing you off of Levo and seeing what happens. Well 50mcg is better than 100mcg.  So do the other tests and keep me posted, and I would like to know what they find.

      Regards,

      Shelly

       

    • Tutu123
      Tutu123 shellyC19

      Posted

      Thanks shelly that is really interesting and I will keep you posted on the results.

      I was taking 150mg of levothyroxine at the highest level so have done well to get this far. The hope is to take me off it completely so I don't need any thyroid medication but if it's not possible I'm going to try NDT as nothing else has worked for me so far.

      Thanks again for your help smile

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