Very high blood cortisol result. Please help :-(

Very high blood cortisol result. Please help :-(

I have been ill for 18 months with fatigue, weakness, dizziness on and off... thyroid was found out of range (underactive) and I have been on thyroxine for 13 months. Recent results showed TSH was 1.7, FT4 19 and FT3 5. Results yesterday showed TSH had gone up to 3.4 and FT4 17.4. So I need to speak to my GP.

I did a saliva 24 hour cortisol test in January this year and it showed it was slightly out of range on all 4 samples.

My GP wanted me to do the blood cortisol but as I have a chronic illness which has led to severe agoraphobia. My GP has to do home visits. I did my thyroid with Medicheck as usual and asked them to add Cortisol. It came back within an hour this morning which I did worry about. The range is 133-537 and my result today is 1192!!!. I am in bits, I can't cope and have broken down. I have noone but my husband and children. I don't know how I am going to cope. I can't even go to the doctors, how will i cope with a brain tumour if it is cushings disease. Which it looks like it is.

I haven't gained lots of weight. I gained 7lb last year once on thyroxine but nothing this year so far. I have had a puffy face for over a year and red face in the last 6 months but I put that down to the thyroxine. My face isn't huge but it's been puffy and at times red/orange. I don't have a hump on my back or anything like that so those symptoms were reassuring me. My blood pressure is normal.

I am now a mess and don't know what to do? Has anyone ever had a result this high and it not been cushings?

I am in pieces and I have noone in the world to give me a hug right now, noone to ring. I have noone as hubby is in work and my mother walked out of my life after my brother attacked me in 2012. I am sat here sobbing, tears streaming down my face. Terrified and it's sent my anxiety through the roof. How will I cope with hospital appointments and MRI. Surgery etc...

I have PTSD as a result of being anxious after the attack, my brother attacked me and for 2 years after until last year when i made the decision to cut my mother out of my life as she was rejecting me knowing I was unwell and the pain was getting worse for me. I have had chronic stress due to my toxic family but I have felt calmer in recent months despite my ill health worsening.

Daily I feel so unwell with fatigue, weakness, feeling woozy and off balance... energy crashes if I overdo things so GP assumed I had CFS on top of the thyroid illness. He didn't think my saliva cortisol was anything to worry about but wanted the blood result to confirm. Now i wish I didn't do them. I had an anxiety attack doing the bloods, I always do as I hate blood tests, even finger prick. So I guess that snapshot the cortisol would be higher but I doubt that high caused by anxiety lol! I had some stress last week and had 1 bad day of high adrenaline and anxiety due to somethign stressful happening but that was the first time in a long while I have felt stressed or anxious to that degree. I daily feel ill and hate it but I guess you get used to feeling so terrible. I do have anxiety but not where i am daily in a state shaking or panicking, just worrying mentally more than anything as I have been worried what is wrong with me as my GP hasn't been very helpful.

I am so upset, scared, shaken. If anyone has any wise words I'd appreciate it.

Thank you

Julie

PS I attach my saliva from January.

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16 Replies

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  • Julie, your cortisol results aren't that dissimilar to mine. To cancel out Cushing you might have to do another test. Stop any suppliments or meds that might effect your levels 14 days before the test. Stress can affect cortisol levels, it's important the day before a test you stay sedate and on the day of the test too.

    You could be in a state of adrenal fatigue and this can be sorted. I know it's easy to say 'try not to worry' but things can be done to help you. Try and have a telephone conversation with your GP, hopefully he/she can put your mind at rest.

  • Thank you Lynn

    Can I ask did you have a cortisol blood test done and were yours high too? what did your GP think about the result? Sorry Lynn, just seen my stupid phone put my blood cortisol as 119, it was 1192!

    Few days before the test I was very upset and stressed, I realise now it was the wrong time to test cortisol and I also had on the day anxiety as I hate taking blood.

    The saliva test results pic I posted is from back in January and wasn't that high, I am now terrified at my blood result.

    Thank you for replying to me.

    Julie

  • 1192 is high, I suggest you retest. Try to do it on a day that you can be sure to take time for yourself. Stress can give an elevated reading. You need at least 24 hrs before the test where you stay out of the way of stress...if that's possible..I know it's difficult.

    My saliva cortisol test is on my thread I posted it a few days ago. It suggested adrenal fatigue. I'm now waiting for a cortisol blood test from my Dr.

    Try not to worry.

  • Thank you Lynn

    I will try not to worry but I keep crying.

    I am terrified doing the blood test again :-( I really am because now my stress and fear has taken over so I imagine it will be sky high again.

    Can it be this high with stress or anxiety though?

    I am considering doing the cortisol again.

  • I'd listen to Clutters advise on upping your Levo. You might find once you've corrected thyroid issues your adrenals will benefit.

    I only know that stress is involved in cortisol levels. Interestingly, I had 2 very sedate days before my test and still my cortisol was high.

  • Thank you Lynn. I'm going to ask my gp this week for an increase.

  • Jingyd35,

    You need a Levothyroxine dose increase to bring TSH down to around 0.30 - 1.0.

    119 (133-537) blood cortisol is low not high! Your Jan saliva tests are slightly over range which I think makes Cushings very unlikely.

  • Sorry Clutter, it was a typing error I did correct. My blood cortisol is 1192.

  • Jingyd35,

    Ah, that is high. Please don't assume it is Cushings. Stress and depression can elevate blood cortisol.

  • I am just worried it can't be this high a result with stress or anxiety?

  • Jingyd35,

    Why not?

  • I just didn't think it could especially as I dn't have high anxiety. I have been ill a long time now with fatigue and energy crashes and this year I have felt worse than last and barely leave the house some weeks. It's been awful. It has made me depressed I admit but more the situation, deep inside I have a fire in me for life and I love my life. I can't imagine I'd get a result this high unless health caused.

  • Jingyd35,

    Stress, anxiety and PTSD are health conditions just as much as pituitary and adrenal tumours are. Obviously neither of us knows whether 1192 is off the scale in terms of cortisol but you certainly shouldn't get bent out of shape by one abnormal result. You may need to retest and if the result is still abnormal possibly have other tests to determine why cortisol is high and whether it is due to pituitary or adrenal adenomas.

  • I am going to repeat my saliva but not sure if that is a good enough test for cortisol.

    I have agoraphobia as a result of all this ill health so right now in a state of shock and no idea how I will face all of this.

  • Jingyd35,

    You're winding yourself up before you even know that there will be anything to face. It's premature to suppose that you are going to require surgery as there are several medications which may reduce cortisol. Talk to your GP before you do another saliva test.

  • I am forwarding the results to him with my latest thyroid results. I am guessing he will refer me to an endocrinologist.

    Thank you.

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