Dissapointed and confused

[Babymilo]

I went to a doctor last week to show my DHEA test result that shows that it is under the normal rate. The doctor was nice, but the result was dissapointing. He said that when DHEA is low for a woman it is normal, because it is a hormone to produce testosteron which is male hormone. Then he said that my symptomps (headache and hairloss) was due to my SLE.

My own doctor for SLE also seemed have no idea about my low DHEA. So, I have a few problems here.

Both of the doctors seems didn't know that usually people with Lupus have low DHEA, but I didn't want to blame them because I got this statement from internet which means could be wrong. I also read in some reliable websites that DHEA is sometimes used for treating SLE patients. So, in my opinion, why my doctor seems didn't really care about that? Sorry for my complaining because I just wanted to know if this is a new knowledge they should know and perhaps it will be a hope for me.

I still want to look for this DHEA treatment. I wonder has anyone taken it? I don't want to try by myself because it must be under prescription.

[SonyaNME]

Hi,

I've been seeing an endocrinologist separately from my Lupus team for about 8 months after a recommendation from a family nemeber who saw them for a separate issue. My DHEA was extremely low (out of normal ranges for anyone), it's responsible for production of male & female hormones so does drop off with age and is often low in immune and a variety of other disorders. I've been on DHEA for a while now, it is not treating Lupus itself (I still have low complement levels, high ESR etc) but it has really helped managed a lot of my symptoms (fatigue, muscle pain, muscle weakness) so my experience has been positive.

As with any medication I wouldn't recommend that you experiment yourself as you should be monitored but you'll need to see a specialist in that area as it's not something the rheumatologist will usually be involved with unfortunately.

Hope that helps a bit.

[Babymilo in reply to SonyaNME]

Thanks for your answer. I actually went to endocrinologist but the doctor said that mine was normal. Yes I don't want to experiment myself even though Dhea can be purchased over the counter. But Im trying to eat healthy food and I hope it will work.

[Paul_Howard Partner LUPUS UK]

Hi Babymilo ,

Here is what I can find regarding DHEA in 'The Lupus Encyclopedia';

"DHEA is a steroid hormone called dehydroepiandrosterone and many people who have SLE have lower than normal levels. Some studies have shown that DHEA may help to increase a sense of well-being and decrease fatigue levels in people who have mild to moderate disease activity when they take 200mg a day. However, acne and increased hair growth are potential side effects; therefore, it is best to consult your doctor before taking it. If your doctor tells you that your lupus is under good control, then DHEA will most likely not help with fatigue, as a 2010 study reported. You can obtain DHEA over the counter without a prescription, but you have to be careful because many off-the-shelf products do not have the correct amounts of DHEA since the FDA does not provide quality controls on over-the-counter supplements. It is best to get a prescription from your doctor and have a compounding pharmacist provide a high-quality product for you instead."