Advice

[Guest Donkey]

Hello good people. Bear with me. 🐻

So i think I maybe have Cushings. For 3 years now I have been feeling tired, with muscle and joint pain, fatigue.also diabetes insipidus ( I think, excessive thirst and urination) and excessive brusing on legs.  My period stoped for a year or so after the pill. That's when I started looking for a couse. My doctor gave me metformin for my period wich helped as my period was back and regular.  Also I noticed circulation problems. Have been reading a lot about Cushings and I have almost all sympoms except striae and I'm not entirely overweight but I gained 15kg in a few months. Also I think I have a small hump that is visible sometimes less sometimes more.  My weigh is oscilating from time to time as are my symptoms. I asked my doctor about Cushings and he says that he doubts its Cushings as I'm not obese and don't have striae.  I've been reading a lot about cyclical Cushings and I'm about to do 24h urine and supression test. I also have PCOS but mild. And hypothyoridism. Could you give me advice on when is the best time for testing. And if I have to stop taking metformin before doing those tests. Before, when testing cortisol in serum I usully went when feeling really bad and my cortisol was elevated but not enaugh for my doctor to call it anything other then stress. 

 

Thanks so much. Hope you understood this gibberish of mine. Excuse my English. Not a native speaker. 👌🤗 

[~MaryO~]

Donkey, I am so sorry to read all that you've been through.  Getting a Cushing's diagnosis is the worst, especially when doctors don't believe us.

You didn't know what kind of doctor you have that doubts you have Cushing's but it sounds like you need another.  Your best choice would be an endocrinologist who has had other Cushing's patients.

Even though you aren't obese with striae...not every person has every symptom.  The only way to diagnose Cushing's is with testing, not by a list of symptoms.

Best of luck to you.  I hope you keep us posted on your progress!

[Guest Hi I’m new here...]

I think I have Cushing’s I have about 10 symptoms...my cortisol levels came out high with a 24 hour urine hormone panel but my endocrinologist did not even mention it. At the time when I had the test done, (March 2020)I had no idea what cortisol was. I just figured and trusted my endocrinologist would prescribe me with whatever hormones and or treatment I needed and would have me take whatever tests he order. Anyhow, in a range from 1-10 for bedtime cortisol, my result was 27! Cortisol metabolites, range from 1160-2183, my result was 5370!!! The only reason I started to do more research on cortisol is because just a few weeks ago I started experiencing severe chest pain from the moment I wake up and any little thing stresses me out and gives me anxiety and I feel like I’m gonna have a heart attack any moment!  So I looked back at my paperwork and noticed these really elevated cortisol levels. But my endocrinologist never mention them… Why? This is how I found this disease,  I have so many symptoms of Cushing’s disease, And it is not a result of exogenous stuff causing cortisol levels to rise. I don’t take any medication whatsoever and was not taking any medication at that time or for the past year. All I have taken for the past year is what he prescribed, thyroid medication and progesterone. Someone please tell me if these levels are of concern from your perspective. 
 

Thank you,

Letisia

[~MaryO~]

Wow, Letisia - your numbers are very high.  I'd definitely ask the endo about your numbers and the possibility of Cushing's.  If s/he blows you off please try to find another one.

You said you were taking progesterone.  That can cause your cortisol numbers to go up but you need to talk to your doctor so s/he is aware of your concerns.

What are your symptoms?  Your doctor needs to hear about those, too.  If you have "before" pictures, those can be really useful, especially if you've gained a lot of weight, gotten a buffalo hump, grown facial hair, etc.

Best of luck to you and please keep up posted!  If you join these boards, you'll find lots of potentially helpful info already available to you.