Suffering, could this be cushings disease? Cortisol Saliva

[Guest Dale]

Hello my name is Dale. I am 23 years old and since the age of early 21 I developed a very odd case of hypertension. Whereas my old blood pressures where in the 120/75 range suddenly I developed 160/90 blood pressure. Since then things have really gone downhill. I have developed pretty severe anxiety and basically dropped out of school about 1 1/2 years ago. That's not the worst, I have been dealing with severe heart palpitations and heart flutters in the last year, and about 3 months ago I suddenly developed shortness of breath that has stuck with me to this day. I was exercising pretty regularly up until this shortness of breath started and had actually managed to lose some weight, however since the shortness of breath started it has become nearly impossible, although I still manage to ride my bike even with the shortness of breath.

 

Recently I consulted a Doctor of Osteopathy who performed some saliva tests on me and they showed that my cortisol levels were pretty elevated, im not sure if this consitutes Cushings but was wondering if you guys could comment. Also I should add that even on 3! Count it 3! Blood pressure medications Toprol XL 25, Losartan Potassium 100mg, Hydrochlorothiazide 25mg I am still averaging high blood pressure readings 140-150/80 . When I went to the hospital with the shortness of breath it had climbed to 190/100 and at that time I was on only the HCTZ and the Toprol.

 

So my cortisol

 

Morning- 8.7

Midday-8.2

Evening-6.4

Night-4.3

 

Reference Ranges are supposed to be

 

Morning- 2.0-10

Midday- 3.0-6.0

Evening- 2.0-4.0

Night- <1.5

 

 

Also my DHEA is elevated slightly at 671.1, supposed to be under 644.

 

 

So I guess my main symptoms are

 

1. Shortness of Breath

2. High Blood Pressure

3. Heart Palpitations, flutters.

4. Chest Pain

 

 

Im not sure if it matters but I have noticed some purple Striae in my groin region, however they dissapeared almost entirely when I managed to lose weight, now they are coming back as I am gaining again.

 

Please get back to me, Dale

[MaidM]

I had similar symptoms and was diagnosed with pseudo Cushings initially through an acupunturist. Basically, it has the same symptoms but to a lesser extent than Cushings from a tumor. Excess stress and cortisone use can cause this.

 

Eventually, I was diagnosed with cyclical Cushings from an adrenal adenoma. I am having my adrenal gland removed at NIH in the next few days.

 

I recommend going to one of the Custings endocrinologists for more testing to find out for sure. Dr Nieman at NIH is one of the top researchers here in the DC area.

 

 

[BDen13]

Your symptoms are very similar to mine and most men who get cushing's.

 

Additionally your salivary cortisol labs are very indicative of cushing's - note that you don't vary much throughout the day while a normal person peaks in the morning then hits almost 0 at late night. It's good that you have copies of your labs.

 

If you let us know where you live we can help you find a good endocrinologist hopefully near you.

[dale23]

Hey guys is the shortness of breath a symptom?

 

Also my location is the NYC area, any Cushings experts?

 

Also can I trust the saliva tests? I have read some mixed opinions about the validity of saliva testing but as far as Cortisol goes can I trust it? Are these results a bit greater than just a case of stress?

 

Also do you guys get the chest pain/heart palpitations?

 

 

Thank you again friends

[BDen13]

Salivary Cortisol testing has proven to be pretty reliable. They'll of course want to run other tests but many endocrinologists who are the most highly involved with Cushing's say that Salivary Cortisol testing is the best way to diagnose it.

 

A 4.3 Midnight salivary cortisol is very high and on its own almost indicative of cushing's syndrome on its own.

 

Yes, I had chest pain and heart palpitations on my worst days when I had cushing's. My hypertension from cushing's also responded very poorly to medication - the only one that seemed to have any effect was Lisinopril which is very similar to Losartan which you are taking.

 

Dr. Geer at Mt. Sinai says she specializes in Cushing's and other Pituitary disorders and is doing research with Cushing's patients - however, I don't have first hand info on her. I have heard recommendations for the pituitary surgery program at Mt. Sinai with Dr. Post.

 

The list on this site also recommends Dr. Carlson who appears to be located on Long Island - http://www.stonybrookphysicians.com/doctor/CARLSON_MD_HAROLD_868.asp

[dale23]

Thank you Bden.

 

I don't mean to be innapropriate but can IMPOTENCE be a symptom of Cushings disease or of high cortisol? The reason I ask is because although I am not entirely impotent I notice on some days my erections are very weak and I rarely get morning erections anymore. As little as 6 months ago I had absolutely no problems, can this also be a symptom of high cortisol? \

 

Thanks,

 

I am likely going to be getting my Cushings tests from an endocrine doctor at New York Hospital Queens as this is my main hospital.

 

Ps, has anyone experienced shortness of breath?

[BDen13]

Yep, lack of sexual desire/performance is very common in men with Cushing's.

 

I always think of it this way - Cortisol is a stress hormone - fight or flight stuff. If it's something that helps you survive in that situation, cortisol makes your body focus on that. So it makes your body put on fat rather than muscle, stop bleeding but not heal, have high blood pressure, not hurt much, etc. The last thing your body worries about in that sort of situation is getting it on.

 

I really stress going to an endocrinologist that specializes in cushing's or at least pituitary disorders. Cushing's is a rare disease and most endocrinologists focus their practices largely on diabetes these days and are therefore unable to correctly diagnose it.

[MaidM]

I had shortness of breath too. Basically, it felt like an anxiety attack...

[MaidM]

There is a video on YouTube which shows what Cushings looks like for a young, fit man... I don't think I can post the link here but if you search "bear silber youtube cushings" you should be able to find it.

[twinkie]

Yep, lack of sexual desire/performance is very common in men with Cushing's.

 

I always think of it this way - Cortisol is a stress hormone - fight or flight stuff. If it's something that helps you survive in that situation, cortisol makes your body focus on that. So it makes your body put on fat rather than muscle, stop bleeding but not heal, have high blood pressure, not hurt much, etc. The last thing your body worries about in that sort of situation is getting it on.

 

I really stress going to an endocrinologist that specializes in cushing's or at least pituitary disorders. Cushing's is a rare disease and most endocrinologists focus their practices largely on diabetes these days and are therefore unable to correctly diagnose it.

 

Most cushie men have low testosterone which leads to sexual disfunction. I also whole-heartedly agree with seeing a cushings specialist, not just your run-of-the-mill endo. It matters!

[lmdtap]

I have seen Dr Geer at Mt Sinai since my surgery 3 years ago. Thus far I have been pleased with her and the care I received.