Possible Cushing syndrome

Posted by jmb73 @jmb73, Dec 21, 2020

I am belng tested for high cortisol levels. Recently, I have put on 25 lbs and have developed a lump above my collar bone. I really thought I had lost weight as I am only eating 2 small meals a day. I am pre-diabetic and in Nov., my PC diagnosed possible pneumonia as I have/had streaky opacities in the left basilar region of my lung. I was given prednisone and she increased my Doxycycline to 100mg 2x/day. I take 20 mg 2x/day for my ocular rosacea. Every 3 months I have steroid shots in my feet for tenosynovitis. I can't take any NSAIDS because I have AFIB. My endocronologist said it could be caused by too much predinisone. I will take 1 mg of DST Sun. at midnight and then have blood work at 7:15 on Mon. I am really nervous that it could be Cushing Disease and I won't be able to take prednisone for my lung issues. I would really like to connect with anyone who has adrenal problems and or Cushing Disease. Thank you, Joan

Hi I developed pseudo Cushing on prednisone and adrenal insufficiency after I stopped it :/ Be careful with this drug

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@adamek3638

Hi I developed pseudo Cushing on prednisone and adrenal insufficiency after I stopped it :/ Be careful with this drug

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I am very concerned with being given prednisone by my docs but I get severe asthma attacks and have spent a week in the hospital on prednisone and other drugs. How are you now that you have stopped it? What have you taken for the adrenal insufficiency? Plus is there a substitute for prednisone? My body is so inflamed that some days I can barely walk. I do take CBD but prednisone is in my lung meds. I am so afraid to go off it as my breathing isn't great. Thank you for responding. Joan

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It was a nightmare. I developed side effects immediately like shingles & herpes. Then I had severe muscles loss, joints pain, skin atrophy, gingivitis, hair loss. No one told me about side effects so I didnt know its from steroids. Took me 8 months to discover it and countless visists. I developed hormonal imbalances, metabolic syndrome, tetany, osteopenia. Then I had to be on hydrocortison for adrenal insufficiency to substitute cortisol, but my adrenals didnt 'woke up' until I received help from alternative medicine and hollistic doctors. Unbelievable experience. I stopped hydrocortison, but Im left with Mast Cells Activation Syndrome on top of that and it looks like I have flares , so have to take it once in a while. I also developed insulin resistance and small fibers neuropathy.

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Hi Joan @jmb73, I am so sorry you are going through such a hard time with your cortisol levels. I know that cheryl1 was recently diagnosed with Cushings at Mayo Clinic.

Other than high levels of cortisol and weight gain, are you experiencing other symptoms as well? Are you bruising more frequently? Is the weight gain in certain areas of the body?

I am sure you have researched it on the Mayo site, but I wanted to share the article about Cushings with you.
https://www.mayoclinic.org/diseases-conditions/cushing-syndrome/symptoms-causes/syc-20351310

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@adamek3638

It was a nightmare. I developed side effects immediately like shingles & herpes. Then I had severe muscles loss, joints pain, skin atrophy, gingivitis, hair loss. No one told me about side effects so I didnt know its from steroids. Took me 8 months to discover it and countless visists. I developed hormonal imbalances, metabolic syndrome, tetany, osteopenia. Then I had to be on hydrocortison for adrenal insufficiency to substitute cortisol, but my adrenals didnt 'woke up' until I received help from alternative medicine and hollistic doctors. Unbelievable experience. I stopped hydrocortison, but Im left with Mast Cells Activation Syndrome on top of that and it looks like I have flares , so have to take it once in a while. I also developed insulin resistance and small fibers neuropathy.

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Hi Kathy, I am so sorry about all that you have experienced. Are you feeling any better now? I never knew predni
sone/cortisone withdrawal could be so awful. What you went through is so scary. I hope you are feeling better now. Take care, Joan

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@amandaburnett

Hi Joan @jmb73, I am so sorry you are going through such a hard time with your cortisol levels. I know that cheryl1 was recently diagnosed with Cushings at Mayo Clinic.

Other than high levels of cortisol and weight gain, are you experiencing other symptoms as well? Are you bruising more frequently? Is the weight gain in certain areas of the body?

I am sure you have researched it on the Mayo site, but I wanted to share the article about Cushings with you.
https://www.mayoclinic.org/diseases-conditions/cushing-syndrome/symptoms-causes/syc-20351310

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Hi Amanda, Thank you for the article. I have been researching Mayo clinic's site and have most of the symptoms. But I do take Eliquis and that could cause the bruising. The stretch marks are all over my legs. I take Dexamethasone test Sunday at 11:30 and get my bloods done at 7:30. Then I will have a tele-appointment with my endocronologist a few days later. Then we will see what she says. I contacted this site as it has helped me in the past. Especially, when I had my Gamma surgery. Thank you for your concern. Joan

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@jmb73

Hi Amanda, Thank you for the article. I have been researching Mayo clinic's site and have most of the symptoms. But I do take Eliquis and that could cause the bruising. The stretch marks are all over my legs. I take Dexamethasone test Sunday at 11:30 and get my bloods done at 7:30. Then I will have a tele-appointment with my endocronologist a few days later. Then we will see what she says. I contacted this site as it has helped me in the past. Especially, when I had my Gamma surgery. Thank you for your concern. Joan

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@jmb73, That is good to know, Joan. Please keep us updated on the progress and results.

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Hi Joan @jmb73, I wanted to check in and see how you were doing? What were your test results after your appointments? How are your flare ups doing?

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Hi Amanda, My endocronologist said I do not have Cushing's disease or thyroid. I have developed 1 hard lump above my clavicle where the clavicle and the sternum meet so my PC ordered an x-ray of my clavicle and it showed nothing. She was angry as she said " I have something" so she sent me for a ct scan of my clavicle/throat area as I have now developed 2 hard lumps right above my clavicle where it meets my sternum. The scan showed I have " right thyroid lobe fullness" and a borderline enlarged right level 2A lymph node. The nurse who called me said I have low thyroid and should get an ultrasound ASAP and get on medication. My endroconologist ordered blood work and it shows my thyroid counts have gone up! They have always been a "1" on a range of 1-4 and now they are 2.4 which is normal. Every female in my family has thyroid. I have the ultrasound on June 5. My endro keeps asking about my empty sella symptoms but I only have mild headaches and 2 fingers with tremors. I do have a thyroid nodule. I will see what my endro says but I am seriously thinking about getting a second opinion- depending on the results of the ultrasound. Unfortunately, no one can figure out the lumps. I saw my cardiologist (routine) and he pressed the lumps and said it's bone but the x-ray and the ct scan say nothing about it. My PC thinks they are caused by arthritis attacking the joints and since I have arthritis everywhere, she could be right but I don't understand why nothing shows up- weird huh? My PC is on maturnity leave and will be back in July. I really trust her judgement.
Thank you for keeping in touch. This time I will let you know how I make out.

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I was wondering, what are the medical tests called that they can do to measure a person's cortisol levels?

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