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Cushing's Awareness Challenge - Day 23 - The Diagnosis and Treatment Process of Cushing's Disease

For many people with Cushing's it takes months, years, or even decades before finally getting a diagnosis and help.  For me, it was 5 years from when I thought I had Cushing's until my endocrinologist told me I did indeed, have Cushing's Disease.

Once you read about Cushing's and think it sounds just like you, here's what you will have to do to get rid of the excess ACTH or Cortisol source

1. Find a reputable endocrinologist that other people with Cushing's have had good luck with.  You can find a list on Cushing's Help HERE.  You can also ask someone that has been diagnosed on the Cushing's Help boards or on the Facebook group which doctors they see.

2. Make and appointment, and be patient!  Sometimes the endocrinologist has to do multiple tests over a period of time, and those results can take a while to come back.  Some tests to expect are 24 hr urine free cortisol tests, midnight salivary tests, dexamethasone suppression tests, or random/midnight serum cortisol tests.

3. Repeat step 2 if necessary, over and over and over again.  My diagnosis came after 18 months of testing.

4. If you are not comfortable with your doctor's plan, or you don't feel respected or listened to, find another endocrinologist and repeat tests.

5. Once you get a high result, you will probably have to have an MRI if a pituitary tumor hasn't already been detected in pituitary patients.  If they suspect an adrenal or ectopic source, prepare for imaging also.

6. For pituitary patients, a lot of surgeons request an IPSS - an Inferior Petrosal Sinus Sampling.  They insert a catheter from your groin to near your pituitary gland (don't worry - they usually give you some kind of sedation.  I was awake but a little out of it, and it doesn't hurt.  They do this to confirm which side the excess ACTH is coming from.  After the procedure you will have to lay flat for a few hours to prevent excess bleeding.

7. If all tests go well and you do indeed have a pituitary tumor which is causing you to have Cushing's Disease, the first line of treatment is to remove the pituitary tumor.  Mine was removed via transphenoidal surgery, which means they went through my nose to remove my tumor.  Here's a video of what they do.  (DO NOT WATCH if you don't like blood!)



8.  You are most likely cured!  If not, repeat step 7.  If you are not cured after a second surgery, you will look into medications, radiation, or bilateral adrenalectomy.

9.  I had a BLA, and I was relieved of Cushing's disease.


It's a long road and a lot of work and patience, but they payoff of losing weight and having a lot of other symptoms relived, like acne, hirsutism, kidney stones, buffalo hump, and the rest of the symptoms listed on the sidebar.


Comments

  1. Cushing's Disease is dangerous for human life, We have to aware about that. Thank you for sharing such type healthy information on cushing's disease.

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