I remember posting with you - though I don't remember exact conversations. I was doing a lot of posting back then.
Glad you're being seen somewhere. Does someone there have not only a depth of knowledge but the INTEREST in CFIDS, FM, autoimmune diseases, etc.?
One question - do you use birth control and if so, what kind? (hormonal?) Hormonal BC often will increase the SHBG (sex hormone binding globulin). All this is is a protein which binds testosterone. Unfortunately, if it binds too much, then too little FREE Testosterone is left to be used by the body. And EVERYONE (even women) need SOME testosterone.
A DHEA-S of 31 is WAAAAAAAAAAAAYYYYYYYY too low for a 27 y/o. Yours should really be more like 200 or higher. A woman my age 35-40 should have level of ~150. (Mine got down to 50 and I felt like I was 80 y/o!!).
Unfortunately, DHEA (as measured through a DHEA-S level - the more stable product) tells one little other than there is an upset in the hormonal balance. However, a low DHEA is found in MANY chronic diseases, including rheumatoid arthritis, clinical depression, organ disease, etc, etc. Obviously, with your symptoms and low hormones, one can see you have some chronic and possibly dibilitating process going on. (Didn't take a scientist to tell ya that one, did it?? You could have told us that on your own!!).
I stopped taking DHEA when I went from East to WEst coast to see a UCLA endocrinologist to try to help diagnose what was going on with me. To make a long story short, I was basically taking a high dose of DHEA in order to replace the thyroid my body was not producing (though I didn't know this at the time). The DHEA would get rid of some of the hypothyroid symptoms (up to about a month), but then the symptoms would return and I would have to go higher to get the same effect.
My PERSONAL OPINION is that DHEA can be given in moderate amounts to supplement a low level, however, it will not (and does not) replace whatever OTHER hormone deficiencies are present. Unfortunately, many of those hormone deficiencies are left undiagnosed because of (1) very old data regarding what is "normal", (2) incorrect data from lab companies which include an unhealthy population's data along with a healthy populations' data (this is possibly what has occurred with DHEA levels), and (3) a lack of studies done on women.
Do you remember what your Testosterone level was? (Total testosterone?).
A more accurate determination of androgen (testosterone) deficiency in women is using a formula called the Free Androgen Index (FAI). A researcher and endocrinologist named Dr. Guay has published on this. He also did (along with many other researchers) the latest studies on women and DHEA levels. It was a large, well-controlled scientific study. That's why I say - in my personal opinion - you are DEFINITELY low. Even if your level came back as 150, I would claim that is too low (for YOUR age).
Most studies are done using DHEA at 25-50mg/day. And THAT is for supplementation. I would not suggest anything over 100. SOME studies have been done at higher levels, but they were for folks with diagnosed diseases such as lupus, RA, etc. If you're using more than 50mg/day, there is something else that needs to be addressed. And chances are there already IS something else that needs to be addressed.
Did anyone ever think CFIDS? (Sorry I haven't been here in a LONG time so I haven't followed everyone's diagnoses/issues).
Also, BTW, your testosterone level WILL go up with DHEA. It does in women, but does not go up so much so in men (interestingly enough). Your Total Testosterone level may actually go into the "above normal" range. This will not necessarily do you harm, UNLESS YOU GET PREGNANT. Testosterone supplementation can cause deformities in the fetus. If you intend to become pregnant, you need to see an endocrinologist who is specialized in infertility or sexual dysfunction - as they will have studied Testosterone replacement in women. A more accurate lab to look at is your free testosterone level (which it sounds like you had). Do you know that number? Total testosterone levels tell us nothing in your case, because your SHBG is so high - it's binding all your testosterone.
Hope that makes some sense to you. I'll be interested in knowing what the Mayo clinic comes up with. Have them look up studies by A. Guay, I. Goldstein, or S. Davis for more info. Someone in the Mayo Clinic (I think named Chu or Cho) published a lengthy review of testosterone in women - though I can't remember if it was actually in support of replacement therapy. (I studied all this stuff for my Master's paper...that's how I know a lot about the research that exists on it).
My diagnosis is Hashimoto's hypothyroidism and CFIDS. I am still hesitant on the chronic lyme disease diagnosis...though I won't say it doesn't exist. (I seriously considered being seen by an Lyme literate doc for many months). I just think there is not enough evidence yet to say one way or the other on that diagnosis, and only one lab is consistently coming up with the positive lab values (though it MIGHT be correct). Time will eventually tell on this one as well.
BTW - this information should IN NO WAY replace the advice of your physician and is not meant to be medical advice. It is personal opinion based on my reading and studying the research and from self-experiences.
Originally Posted by schao
You answered one of my posts quite a while ago. I have many symptoms that could be lyme, cfs, fibromyalgia, etc.... Anyways, I am being seen at the mayo clinic right now going through many tests. I had my hormone tests done and my DHEA-S came back low. It was 31, with a range of like 45-150 or something close to that. Anyways I just started a DHEA supplelment and if I remember correctly you are on one too....how many milligrams do you take a day? My Free Testosterone also came back just a little low, and my SHBG was very high--do you know what that means? Thanks for your help!!!
I am a female--27 yrs old.
One more thing...do you have cfs or lyme?