My husband has been sick for over 14 months now, and we have been to many specialists and still have no diagnosis. He is 42 years old, and his primary symptoms are fatigue, muscle wasting, muscle and joint ache, brain fog, faintness, high pulse rate, insomnia. He has been tested for MS, Lupus, ALS, Lyme disease, Mono, brain tumors, thyroid problems, food allergies...
The only positive test was that he failed a tilt table test, so physicians at St. Luke's in Houston diagnosed him with neurocardiogenic syncope and gave him medicine (Midodrine) to raise his blood pressure, which was normal. After about 3-4 months on that, his blood pressure was not any higher and his symptoms were not improved, so he discontinued that med.
His testosterone was not checked until June of this year, and at that time it was 218 ng/dL (normal range 280-800). He received a shot and was prescribed Androgel. He has continued to decline healthwise and has been unable to work for quite some time, and last week he lost consciousness and passed out (at home). The testing that happened that day found that his testosterone was 233 ng/dL and his cortisol was 22.7 ug/dL (normal range 2.3-9.4). His pulse was very high, but his blood pressure was normal. I took him to his regular doctor who sent him to a cardiologist who suggested adrenal problems. He had two MRI's (no contrast and high contrast) of his brain and a CAT scan of his adrenals this past week to look for pituitary or adrenal tumors. Both showed no tumors. He also had an ACTH done, which I do not have a copy of, but the doctor called and said it was normal. We do have an appointment with an endocrinologist but the wait time is such that we won't see him for another three weeks. (Our primary care doctor does not seem to think it is Addison's or Cushing's from the tests that were done this week.)
Can anyone help us? Make a suggestion on what to test for?
I am not sure where to post so I tried Men's health because of the low testosterone. His grandmother did die from Lupus, but they have checked for that repeatedly.
Re: Low testosterone, high cortisol, fatigue, ache
I have gone through the exact same situation, starting 4 years ago. It started with me getting very lightheaded, dizzy and then almost passing out. My HR was high, but my BP wasn't too bad. Initially they thought it was dehydration. Then I continued to have the symptoms, and eventually failed a tilt table test. I was diagnosed with vasovagal syncope. I was put on a beta blocker (toprol XL) to control my HR and it helped. However, I didn't feel right. This went on for 3 years. I had to drink 100-150 oz of water daily, or I would feel dizzy and my HR would go up. Finally, a year ago I went to an endocrinologist who found my testosterone to be low. I am now on 10 gm of Androgel daily, and feel great. My T is up closer to 500 and that has made a huge improvement. The brain fog went away, the tiredness, the aching joints all improved. I didn't have the cortisol issues, but otherwise it has been the same for me. I suggest trying to get higher dose of T, and try to get his levels up higher. That was the answer for me. I hope this helps and let us know what they find. As an FYI, I went through all of the above testing as well, with the MRI's, different labwork, CT scans, and 24 hour urine analysis checking for adrenal problems. Good luck.