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!

12 comments:

  1. Hello, JK,

    Thanks for your blog. I am a male 15-year ulcerative colitis sufferer who has recently found bitter-sweet relief in azathioprine (or Imuran) after traditional methods no longer worked. I've had spells of very low energy over the years when I've been really sick from it, but the azathioprine really kicks my butt in that regard. I think I slept every minute possible the whole first month of taking 50mg daily. Thereafter, I have been able to keep going well enough as long as I stay moving, but when I stop moving, I'm toast! Besides being tired all the time, I can't concentrate and I have constantly aching joints for the first time, whereas I used to only have brief spells of these symptoms. I understand this is not a common response to azathioprine, but it seems to be mine. Still, compared to the misery of often severe UC flare-ups, I'll take it!

    To get to the point, I was encouraged to try testosterone replacement therapy to see if I could get my edge back. My blood test revealed that I am about 20 points above what is considered the lower bound of normal (which has such a wide "normal" range it seems useless to me), so I was further encouraged. I was able to cajole a urologist into prescribing 5mg patches a week and a half ago.

    After giving it a few days to kick in, I have regained a good bit of my vitality. Of greatest importance, I can concentrate again!

    I don't expect testosterone to cure what ails me, but it definitely seems to be helping me feel more like my old self. Add to that the potentially positive effects it can have on metabolizing calcium and bone growth (years of prednisone has me expecting major issues down the road) and more strength and stamina that allow better daily workouts, and I think it's well worth the anticipated hair loss.

    I'm with you. Even if it doesn't solve the autoimmune problem, it seems to be helping immensely with the symptoms and deserves consideration as a standard treatment.

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  2. Glad to hear testosterone has helped you manage fatigue and the blues caused by your disease too. They do see some improvement in disease symptoms in men when the testosterone deficiency is corrected. They are not sure why testosterone does not seem to affect the disease course in women.

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  3. It is interesting to note that women with lupus metabolize testosterone so fast. Testosterone is converted to Estradiol (an estrogen hormone) via the Aromatase Enzyme. This occurs both in men and women. People with Autoimmune disorders may see improvements with DHEA and Testosterone supplementation along with an Aromatase Inhibitor such as DIM (diindolylmethane).

    My theory behind this is that some people may have to high of levels of Aromatase in their body (Aromatase is contained in fat cells in both men and women(More fat = more Aromatase), and in the ovaries in women)

    Aromatase may be converting to much Androstenadione into Estrone(an estrogen hormone), rather than Testosterone. This causes a rise in Estrone resulting in an imbalance with Estradiol. Estrone and Estradiol both compete for pituitary gland receptors. The pituitary gland controls the production of hormones including DHEA which is metabolized into the precursors to testosterone and estrogens. This is a very simple overview. Ultimately taking an Aromatase inhibitor may help reduce Estrone, correcting the proper balance with Testosterone and Estradiol. The dose would need to be adjusted as to slow down production of estrogens without stopping them.

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  4. A nice blog and interesting posts that add valuable things to our knowledge. about 70% of diseases are linked with the hormones imbalances and thus the testosterone has also bad effects on physical and mental health of humans. So it is necessary to diagnose the low testosterone and closely notice the Low Testosterone (Low T) Symptoms for in time treatment to avoid effects.

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  5. I found this entry searching the internet for a link between low testosterone levels and autoimmune diseases. Maybe you allow me to pick your brains... what does that mean for individuals diagnosed with complete androgen insensitivity syndrome which basically means that no amount of testosterone can be processed in the affected persons body?
    thank you for your input and thoughts on this!

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  6. I don't have much knowledge in CAIS, but I could see how the immune system would not function normally. In autoimmune diseases they think the body rapidly metabolizes testosterone so the cells are still able to respond to the hormones. I quickly googled CAIS with autoimmune and didn't get many relevant links back.

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  7. I am glad I found this blog. I have Ulcerative Colitis and type 2 diabetes. For the past 3 years I have dealt with chronic fatigue syndrome and Low Testosterone. I have been put on testosterone injections. When I was first put on the test c shot, after a month I had one week in which I felt incredibly good. I don't think I've ever felt that good in my life. After a week I went back to feeling bad again and it only got worse. I had labs that showed good T levels. I don't think the Dr was addressing my E2 levels but thats another story. After a failed attempt at TRT I went on clomid. Same thing except this time i never had a "good week". So now I am trying to find out why my T levels and my LH are low and why does TRT make me feel worse. I wonder if the fact that my E2 levels were never optimized could be the cause for feeling worse. Also my blood count was suspected of being high. I had to get off the shot before we got to test it. This is wrecking my life... I have an appointment scheduled with yet another endo.

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  8. who is the dr specializes in addisons..as that is what i have thank you

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    1. http://www.goodhormonehealth.com/

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  9. I am also looking into the possibility of higher T to offset my autoimmune issue. My docs do not know one way or another whether it does anything, so maybe I will have to try it myself and find out.

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    1. I am in the same boat you are John. I am just starting Clomid to see if the increase in T levels helps my autoimmune problem. Last year my T was 600, now has fallen to 450 due to this issue. If you get better or worse, please post it, I will do the same.

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    2. Update to my last comment. I have been on 100mg DHEA, 150mg Preg and have added in 12.5 mg Clomid EOD. The DHEA & Preg have seemed to make things better, felt better, more energy, have been doing my work pretty well. The Clomid may be a problem, not sure yet. On the day I take it, I have a flare the next day, but the day after things are OK. It is up to me to figure this out since no docs have a clue. If you have a theory, let me know. I am thinking of adding in an aromatase inhibitor like was mentioned earlier, but DIM, is not a AI, it just clears estrogen out more quickly, would need something like Arimedex. Have to research before I pop more pills :)

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