Welcome

I have suffered from autoimmune disease since the age of 17 and I have several relatives who are also fighting autoimmune diseases. I have been diagnosed with Autoimmune Hepatitis (AIH), Lupus, and the Antiphospholipid Syndrome (APS). Family members have been diagnosed with Rheumatoid Arthritis, Dermatomyositis, Grave’s, Hashimoto’s, Vitiligo, and Type I Diabetes.

In the search for my diagnosis, I have seen doctors in six states, from every medical specialty, seven of whom were Rheumatologists. I had an extremely difficult time finding a doctor to take my symptoms seriously because most of my blood work was normal and I did not look sick. I have a Master’s degree in Aerospace engineering and solve puzzles for a living as a systems analyst. I resorted to reading medical journal articles to try to put my own pieces together when the doctors were finished looking. I ended up being a very complicated case and had the unfortunate luck to end up with the rarest and oddest of symptoms, as if all autoimmune symptoms aren’t bizarre enough! It took me 13 years to finally find a doctor who understood my body.

As a result of my search for a diagnosis, I’ve learned a lot about the immune system, doctors, and the medical system. I’ve been asked by numerous people who have heard my story how did I find out certain facts, or how did I find a certain doctor because they also have a friend who the doctors don’t seem to be able to help? Over time, I’ll post all the knowledge I’ve gained over the years, to give someone else having troubles obtaining that elusive diagnosis some other options to consider when you hit a brick wall.

Email: autoimmunediagnosis@gmail.com

Medical Disclaimer

This website is for informational purposes only. Readers are encouraged to confirm the information contained herein with other sources. Patients should review the information with their professional health care provider. The information is not intended to replace medical advice offered by physicians. Remember I’m a rocket scientist not a doctor.

Monday, July 26, 2010

Low Testosterone and DHEA in Lupus

Researchers have discovered that both men and women with autoimmune diseases have low levels of androgenic hormones or the male sex hormones such as testosterone and DHEA. It is believed that people with autoimmune diseases metabolize testosterone too quickly.

“Low levels of sex hormones are seen in one-third of men with an autoimmune disease – and that’s every autoimmune disease across the board, says Dr. Lahita. In the other two-thirds, there are not low levels of androgens, so the cause is unknown,” he says. Testosterone is protective, at least in men, he notes. We also know that women with lupus metabolize testosterone so rapidly that their levels of the male hormone are low to nonexistent. Lack of testosterone appears to be a key in lupus. So why not give testosterone to people with lupus? We tried it, and it really didn’t work, Dr. Lahita says. The FDA recently rejected approval of prasterone (Prestara), a drug based on a weak form of testosterone, for women with lupus.”

Gender Differences In Health Care


Another article from pub med acknowledging low testosterone and DHEA in Lupus, but also saw no real positive results when giving patients testosterone.

“CONCLUSIONS: Testosterone patches were safe but did not significantly affect disease activity, quality of life or sexual functioning. Increased use of steroids in the placebo group may have confounded the study results.”

Testosterone patches in the management of patients with mild/moderate systemic lupus erythematosus.


I did find one article that was positive about testosterone and DHEA replacement in Lupus.

Interestingly, researchers in animals and humans are reporting that testosterone can reduce the body's inflammatory response. There are reports that the inflammatory states of Crohn's disease, rheumatoid arthritis, diabetes vaculitis and now Lupus erythematosis may improve when treated with anabolic steroids (testosterone, DHEA and human growth hormone). This benefits of anabolic steroid therapy are, therefore, not limited only to men. It now seems that for these diseases, testosterone works well for women too.

Edward Litchen


Both my DHEA and testosterone levels were low. My DHEA was below detectable levels. DHEA is available over the counter, but I only took DHEA under doctor’s orders. I first tried 25 mg twice a day and noticed an improvement in mood and general outlook. Then they had me try 100 mg a day. I felt a little better than the 50 mg, but my face became very oily and I developed acne.

Next, I saw an Endocrinologist who specialized in adrenal glands and he said his Addison’s patients (whose bodies can’t make DHEA) do much better with 25 mg of DHEA and 2.5 mg of testosterone in a cream form. So he tried me on the same treatment. I felt the best on the DHEA / testosterone combination and my skin returned to normal. My autoimmune symptoms are adequately controlled by prednisone and Immuran. Even with the prednisone and Imuran, I do have a lingering rash on my knuckles and minor joint pain that will probably never completely go away. The addition of DHEA / testosterone did not improve the rash or joint pain.

I guess I’d have to agree with the researchers that the DHEA / testosterone didn’t have a big impact on my disease course. However, I would disagree with them when they said they saw no benefit. It greatly increased my quality of life by treating my depression without having to take anti-depressants. I think that is huge and worthy of treating the hormone deficiency. While I still have fatigue and the feeling of being weighed down all the time, I do have more energy and stamina. It’s like I’m able to endure the fatigue better and keep going. I used to have to lay down for at least 30 min. a day to make it to the end of the day and now I can keep up with my friends without stopping. I’m still tired at the end of the day, but I feel better since I am able to accomplish more. My husband can tell a dramatic difference in my mood which has made his life better as well. I like to tell people I may still have fatigue and pain, but at least I'm happy about it now!