Cushing's or Pseudo Cushing's?

[Guest Katski]

Hi-

I have been told my my Endo that I need further testing to see if I have Pseudo-Cushing's or Cushing's. He said he is leaning toward Cushing's. My 24 urine cortisol was over 150. He also said that my low-dose dexa test came back abnormal. He wants me to do some more 24 hr. urine tests and a salivary test. I am also scheduled for another test if these come back positive (I think he said it's over the course of a few days).

I've been having some strange symptoms for almost 2 years. One of the first things I noticed was periods of anxiety that would come and go. I was having serious muscle weakness and exhaustion. I felt like I was carrying weights around with me all the time. I couldn't climb the stairs without stoppping. I am woken up at night with muscle cramps in my arches and shins. I was also having some weight gain. I would go on 1200 calorie a day diets and gain weight (I've gained 20 lbs. while dieting on and off over the past year). I had so many heart palpitations that I would feel like I was going to pass out.

To confuse things, last May I had a freak heart attack at age 48 (caused by a spontaneous dissection of one of my smaller coronary arteries). I was fine in the hospital. In fact, I was calming everyone else down! The Dr. started me on cholesterol meds and a nitrate (my cholesteral, etc. are all normal, but this is the protocol they follow after a heart attack like mine). About 4 or 5 days after I got home I started experiencing panic and anxiety that was off the charts. My Dr. took me off the meds and put me on a low dose of Celexa (anti-anxiety). My question is this: can anxiety cause levels this high? My anxiety levels are much less than they were the first few months after my heart attack. However, I can say that it's never really disappeared. So now I ask myself what came first? Was I sick with Cushing's before all of this, or have I made myself sick?

[JenS]

Psuedo Cushing's is very rare. Cushing's is more likely - and anxiety is actually a symptom - as well as the heart problems, weight gain and all. It is more likely that the cortisol is causing the anxiety rather than anxiety is causing the Cushing's (psuedo is actually depression causing Cushing's, not anxiety).

 

Make sure you read up on testing so you get it done properly - correct times, correct methods (keep jugs cold, ACTH done right etc) and get copies of everything so you know what is going on.

[Katski]

Hi-

Thanks for your reply. I see at the bottom of your post that you had a parathyroid problem as well. I am having the same issue. In fact, that's how they found out about my cortisol levels. I had a sestamibi scan done in May that revealed a "probable pituitary adenoma". He sent me for an MRI and also did a bunch of hormone tests. The 24 hr. urine showed my cortisol to be high (150-is that considered high or not too bad?). However, the MRI did not show an adenoma or abnormality. My endo tells me that they are micro adenomas and sometimes you aren't able to see them on an MRI, but the sestamibi scan shows where the "bad cells" are. So he feels that there could be something in there, but it was missed on the MRI. I did read that Dr.'s are using sestamibi scans to look for micro adenomas of the pituitary so I guess it's possible.

The parathyroid problem is strange. My 24 hr. urine calcium is very high. However, my parathyroid and calcium levels are going between the high end of normal and slightly elevated, and the sestamibi scan doesn't show any abnormalities, but I have a parathyroid gland that's down in my chest (?). However, I have osteoperosis and kidney stones, and so the endo sent me off to the surgeon. The surgeon is doing a 4-D scan on the 29th to see if I have an extra gland, or if there is something the other scan missed. Quite frankly, I'd like to find out the results of my Cushing's tests before I jump into parathyroid surgery since Cushing's could be contributing to the osteoperosis and some of the other symptoms.

This is getting a little confusing....

[JenS]

Wow I have never heard of a neck scan showing a pituitary lesion! I don't know what your lab ranges are (every lab differs) but at my labs, 150 really high so I would get a copy so you can see the range - some end at 34 (the better, more sensitive test) and others at 50 - the test most endos order. If your endo is telling you that the lesion is tiny blah blah blah get to a pituitary center quick - your endo is an endiot - and has no idea what he is saying. Yeah, sometimes they cannot be seen but the tests show you have an issue - you need treatment after more testing.

 

Parathyroid glands can be funny - my issue is after two thyroid surgeries, I only have one left and it is struggling. So I have low PTH, high urine cal, and my cal sometimes dips low - so it just comes and goes - it makes ya feel like poo. I would get the parathyroid thing taken care of ASAP - even though the cushing's will effect bone, the parathyroid stuff will do it much faster. And the calcium can effect your heart and all - so go for it.

 

Multiple issues make it complex - so make sure you get copies and get a decent doc. I would find a pituitary center.

[Kok]

Can you get orders for MEN?

 

[Katski]

JenS-

I wondered the same thing. I guess it's the location of the contrast - the report said something about contrast being midline to the skull base - compatible with location of pituitary adenoma.

Kok-

According to my Dr. "right now we are chasing Cushing's down". I was told if I have Cushing's, he will move on to MEN testing. The Endo is waiting to see what my salivary and second 24 hr. urine is, and (if I fail those, too) a different test that that takes a few days and involves some kind of injection. So I guess time will tell. This is a very long process. And I'm not the most patient person....