Extremely High Serum ACE (above 400)

[SoccerFan13]

Hi,

My serum ACE levels are extremely high, off the charts.  About 3 months ago it was above 400, 1 month ago it was in the 300s.  According to a rheumatologist, this is extremely high.  Chest x-rays and urine calcium levels were normal.  I had a full body gallium scan and that was normal.  I have been having the most horrible symptoms for the past few years, including extreme fatigue, irritability, memory loss, hair loss, numbness in my limbs, heavy and weak limbs, muscle aches, loss of coordination, etc.  It has progressed to the point where I am no longer able to function at work and had to quit several jobs.

Am I missing something?  Is there another possible reason for my ACE levels to be so high?  All the other possible culprits, as listed below, are nearly impossible because I have none of the risk factors or symptoms.

Thanks

Active histoplasmosis
Alcoholic cirrhosis
Amyloidosis
Asbestosis
Berylliosis
Diabetes
Gaucher's disease
Hodgkin's disease
Hyperthyroidism
Idiopathic pulmonary fibrosis
Leprosy
Myeloma
Primary biliary cirrhosis
Pulmonary embolism
Scleroderma
Silicosis
Tuberculosis

[National Jewish Health]

The disease most commonly associated with ACE is sarcoidosis.  However, it is no longer considered to be a means to monitor disease activity and/or response to therapy.

Less well known is that ACE can be significantly elevated in a number of other conditions including multiple sclerosis, Addison’s disease, hyperthyroidism, diabetes mellitus, alcoholic hepatitis, peptic ulcer, and the nephritic syndrome and, perhaps, with chronic fatigue syndrome.

Other pulmonary disorders with significantly increased ACE include emphysema, asthma and lung cancer.

The possibility of adrenal insufficiency is intriguing.  The presentation of this is a long history of malaise, fatigue, anorexia, weight loss, joint and back pain and darkening of the skin.

I suggest that you discuss the possibility of your having one of the diagnoses listed above as less well known conditions associated with significantly elevated ACE.

Good luck.

[SoccerFan13]

**BUMP**

[SoccerFan13]

Well, either my question is way too difficult to answer, or I am experiencing the same type of apathy that I receive from most doctors.  It is a shame.

[SoccerFan13]

As Americans, we need to realize that many of these "doctors" don't work for us, they work for their hospitals and indirectly work for the insurance companies.  They could care less if we are suffering and need help.  Thanks for all your help "MedHelp", National Jewish.  You succeeded in making me feel marginalized and hopeless.  All that is left for me, a young man of 28 years old, is death.

[SoccerFan13]

PLEASE FOR GOD SAKE HELP ME.  Doctor's have found no evidence of sarcoid but ACE levels still very high.  I am suffering.  Should I ask for a referral and get a second opinion?

[SoccerFan13]

Thanks for your reply.  It was more helpful than most of my doctors.  They have given up on me.  I apologize for voicing my displeasure earlier, but when you have been in pain for so long, you become quite irritable.  I am going to try to get a referral to a respected medical clinic in my area.

Thanks again