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Old 07-25-2006, 08:19 AM   #1
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schao HB User
Kali M.....

Hi there:

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.

schao

One more thing...do you have cfs or lyme?

Last edited by schao; 07-25-2006 at 08:25 AM.

 
Old 07-25-2006, 12:58 PM   #2
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Kali M HB User
Re: Kali M.....

Hi Schao,

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.

KM

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.

Quote:
Originally Posted by schao
Hi there:

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.

schao

One more thing...do you have cfs or lyme?

Last edited by Kali M; 07-25-2006 at 09:46 PM.

 
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Old 07-26-2006, 07:58 AM   #3
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Join Date: Jan 2005
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Posts: 675
schao HB User
Re: Kali M.....

Hi Kali:

Thank you for your informative post. I have my labs with me today, so here are a few of them:
DHEA-S: 31 (45-320)
Total Testosterone: 15 (2-45)
Free Testosterone: 0.3 (0.1-6.4)
% Free Testosterone: 0.21 (0.7-2.3)
SHBG: 209 (17-120)
TSH: 1.10 (0.45-4.50)
Free T3: 4.0 (1.8-5.4)
Free T4: 1.4 (0.8-2.1)

I had my TSH check again recently at it came back as 0.46 (0.45-4.50)
I also had my serum serotonin checked, and it came back so low it didnt even register on the charts. The range was (22-180), so I'm not sure what that means yet.
Yes, I do take birth control pills. I'm really wanting to see an endocrinologist at the mayo clinic.
I dont have a diagnosis yet. I saw a rheumatologist and she started talking about fibromyalgia--which she said is sometimes linked to cfids. I'm also still looking into chronic lyme as well. It's all so confusing when you can't get a conclusive diagnosis--hopefully I will soon. What are your symptoms and how long have you had them?
I just started taking the DHEA and I am taking 25mg once a day--did you see any improvement when taking it?--If you did, what kind of improvements?
Thanks for your help!

schao

 
Old 07-26-2006, 12:42 PM   #4
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Kali M HB User
Re: Kali M.....

Schao,

I got goosebumps on my arms and tears in my eyes reading your email. GOOD GOD woman. No wonder you feel like ****** (my "*"'s there, but put the emphasis on the word!!). Oh my gosh. Those labs SUCK. (Can we say that here).

Your BCP's are most likely why your SHBG is so elevated. I wouldn't count on that being the only reason your labs are so crappy - there's obviously something else going on - but it's NOT HELPING. Do you have a GYN? I don't know if going off BCP's would help your symptoms any - because it sounds like there is something else underlying (like CFIDS, Hashimoto's, FM, WHATEVER). But, you may have more available testosterone if you change to a different method. (Which pill are you on? Is it a low dose/mini pill?). This is a bit personal too - (sorry!) - do you want to get pregnant (or pregnant again?)? You have some options, but whichever you choose, you need to be SURE to let your GYN know that you have androgen deficiency, AND possibly CFIDS or Fibromyalgia.

I'm getting ready for a friend to come into town for a little mini-vacation before I start back to work, so I don't have time immediately for a list of my symptoms. (Look at my response to one of the guys that posted here recently - Jmana; his symptoms were EXACTLY like mine PLUS other stuff). I'll come back later and list them.

ALL your Testosterone levels SUCK. NONE of them are within normal for your age. Your % Free T should be more like 2.0 (for your age)!!! Mine was 0.30 and I know how horrible *I* felt! I know a great doc in MA who could help with sex hormone replacements, BUT that's just one part of it. It doesn't address all the other deficiencies and problems. Andre Guay is the specialist in Mass. He's highly respected and a prolithic researcher & speaker. Charles Lapp is one of the absolute best and most respected physicians treating CFIDS these days. He's in Charlotte, NC. Are you near either of these places? I think I'm aim for Lapp, because I think he could address the more general problems. But, Guay is an amazing endo. BOTH will charge you and ask you to file your own insurance. This is because of all the problems with insurance companies these days. In my opinion, it is worth it. I ended up going to an excellent endo in LA, Cal who teaches at UCLA (I lived in NC at the time). And I paid COMPLETELY out of pocket to do so. I don't have money - but this is an investment in your health and your LIFE. Had I not gone to him, I'd have gone to Lapp.

Serotonin is a brain neurotransmitter. Often is low in depression (but doesn't mean that's the only thing going on with you). My guess is that you have LOADS of labs that are "off" if anyone chose to do the right ones. Problem is it doesn't really tell anyone what's wrong, so to do all those labs isn't always justified (in the eye of the insurance companies). You MIGHT benefit from an SSRI (like Zoloft, Paxil, etc)...BUT, I seriously (I can't emphasize this enough) don't believe that this is the root of the problem. It's just another sign of your system going awry.

Are you on thyroid replacement??? If you're not, that decrease makes me wonder if you don't have Hashimoto's hypothryoidism. People who feel as bad as you do don't typically have a TSH that low. Your Free T4 and Free T3 aren't horrible, but I don't think that really tells the whole picture. Did anyone ever do antimicrosomial AB antibodies AND anti thyroid perioxidase antibody testing on you?? THEY NEED TO. These will help determine if you have Hashimoto's. Has anyone in your family had hypothyroidism or any other autoimmune disease??

Good luck! I'll be back to say more, but it may be a little while. (SORRY).

KM

BTW - I don't know how much good 25mg is going to do, but it MAY help. Someone should be doing androgen (DHEA-S, testosterone) labs AND a LIVER PANEL on you about ever 6-8 weeks!!! AND DON'T GET PREGNANT!!

NOTE: None of the information above should be considered medical advice and none is meant to replace the advice of your physician. The above information is based on personal reading of research and personal experience.

Last edited by Kali M; 07-26-2006 at 12:47 PM.

 
Old 07-31-2006, 08:24 AM   #5
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Join Date: Jan 2005
Location: Phoenix, AZ
Posts: 675
schao HB User
Re: Kali M.....

Hi Kali:

Thank you for your response. For birth control pills I take the generic of Orthocyclen---Sprintec. I've been taking it for about 6 years now.
I did have a full thyroid panel done including the antibodies--and those came back negative. My thyroid is kinda all over the place though.
How are you feeling these days? If youre better--how did you get to feeling better? I'm not planning on getting pregnant anytime soon, but why would it be bad if I did? Sorry I'm not very knowledgeable about this kind of stuff. I've had loads of bloodwork done, and these were the only ones that came back off, and also at one time I was exposed to EBV as well.
Hope you had a great mini-vacation!!!

schao

 
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