Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jan 18, 2007.

  1. Slayadragon

    Slayadragon New Member

    It's my recollection that I woke up this morning and read a question addressed to me about DHEA, pregnenelone and DLPA. I could have been dreaming it though.

    Whether it was real or in my dream, the poster asked me 1) if I thought it was okay to try taking 10 mg of DHEA and 2) what DLPA is.

    I am not a physician and therefore don't give medical advice. I will tell you my observations though.

    I think we all have learned from Jolie's situation (if we didn't know it before) that taking any DHEA at all without having labs done is a very very very bad idea. I believe this to be true of pregnenelone (another steroid hormone) as well.

    Finding a personal doctor who believes that DHEA is a relevant factor for CFS patients and who will work with you on it obviously is by far the best way to do this. This may require some search, of course.

    Bigmama2 has reported what she believes are positive results for herself using a doctor who specializes in this area and works with patients over the telephone. I do not know the qualifications of this doctor, but that seems something to look into.

    If I believed that DHEA might help me and absolutely could not find a doctor to measure mine upfront, what I might do is to use a very small amount (like 5 mg) for a couple of weeks. I then would go to my doctor and tell him/her that I had been taking it and was (if it were true) feeling better as a result, and then ask for a blood test.

    It's my belief that a doctor would be pretty obliged to give a DHEA test under those circumstances or to dismiss you as a patient. Probably you will be able to guess in advance which of those two things a particular doctor would do in this circumstance.

    Under no circumstances would I keep taking supplemental DHEA without having a test done, though.

    Another comment is that the "normal" range for DHEA is very wide. I've had four good doctors tell me that with low normal values, supplementation still may be useful. Again, monitoring of status with lab tests is crucial.

    DLPA is an amino acid that helps with pain and depression. Some say that it is converted into phenylethylalanine, the substance that our bodies make when we are in love or eat a whole lot of chocolate.

    Be careful with amino acids. It's best to talk to a doctor, but at least people should read up on them a lot first. There's a lot of good information on the Internet, and doing a content search on this board will bring up lots of info on DLPA that is directly related to CFS and fibro patients.

    Amino acids tend to be more likely in general than most supplements to interact negatively with drugs. If you're on any drugs, be sure to find out whether amino acids that you're considering interact negatively with those drugs.

    It's possible a pharmacist might be able to help you figure this out.

    [This Message was Edited on 01/18/2007]
  2. Gretchen12

    Gretchen12 New Member

    I was the person asking you about DHEA & DLPA. Also, was answering your post re genetic susceptibility.

    Hope you read my full post.

  3. Forebearance

    Forebearance Member

    I just want to add that you can get a saliva test for DHEA, which you can do without a doctor's orders. :)

  4. Slayadragon

    Slayadragon New Member

    Information about the saliva test would be a good thing to keep on hand. Do you know the company name or phone number?
  5. Forebearance

    Forebearance Member

    I had a test done by the ZRT lab, which is in Beaverton, Oregon. Next time I think I'll use the Canary Club, because they have better prices.

    You can read about the Canary Club at the thyroid page on About.com. It was created by the Dr.s Shames to help thyroid patients, but it has tests for everything.

  6. cherylsue

    cherylsue Member

    Do you need a doctor's prescipt for the Canary Club?

    Also, I had asked what DLPA was, too.

    Thanks for the info.

  7. Slayadragon

    Slayadragon New Member

    Read my description of DLPA in the first post.

    If you're still suffering from depression, it could be something for you to consider.

    I take DLPA, St. Johns Wort and l-theanine to help my mood stabilizer (Lamictal). For me at this point in my life, the combination has worked pretty well.
  8. Forebearance

    Forebearance Member

    CherylSue --

    I don't think you need a prescription for either place. You're welcome!
    [This Message was Edited on 01/20/2007]
  9. Forebearance

    Forebearance Member

    Wow, you guys! I just discovered the coolest thing about DHEA!

    I had been taking my DHEA when I first woke up, around 10:30 AM. I discovered that if I take it when I get up to go to the bathroom, around 7 or 8 AM, it doesn't give me acne! Cool!

    I'm guessing that taking it earlier allows my body to make less in the morning, so there is less duplication of effort.

    When I go back to sleep, I sleep more soundly. I love figuring hormones out. They are so powerful.

  10. Slayadragon

    Slayadragon New Member

    That is very interesting about the timing of when you take the DHEA affecting amount of side effects.

    I tend to think that your explanation is accurate.

    At one point long ago, I was (very foolishly) vaguely considering trying to get pregnant. I asked my hormone doctor what she thought regarding the various hormones that I was taking at the time.

    She found DHEA supplementation particularly problematic even if my DHEA level in general was very low. The reason, she said, is because DHEA supplementation causes a big wave of the substance to be dumped on the body all at once.

    Being exposed a large quantity of it all at once, even for a short period of time, could have negative effects on the fetus. (I think she was talking about female babies here, since exposure to androgens can cause masculization.)

    Upon reflection, I'm not sure why DHEA is not supplied in time-release formula like my T3 is. That would seem to be healthier overall. I will try to remember to ask my doctor about this next time I see him, when we talk about hormones.

    Good observation! Thanks for sharing.
  11. Forebearance

    Forebearance Member

    You could have had a baby boy with a beard!

    Just kidding, of course. I had read or been told that the body normally makes a lot of hormones around 7 or 8 AM, right when a person would naturally be waking up.

    So if I can get the supplements in before then, it might save my body the work. Then it could, theoretically, save the hormones it makes for later in the day.

    I'm glad you liked that idea.

  12. munch1958

    munch1958 Member

    My compounding pharmacist, Pete @ Bellevue Pharmacy Solutions, arranged everything for my home saliva tests.
    This pharmacy does a lot of consultations on B-HRT through Hystercity or HysterSisters (not sure which) and Power-Surge websites. I've faxed them copies of my FFC labs for review. That's been very helpful.

    The saliva test kits were shipped to my house and the results were sent to me. They even billed my insurance company (BC/BS at the time). My insurance covered it at 100% since I had already met my out of pocket for the year. The lab used was Aeron Life Cycles.
  13. Forebearance

    Forebearance Member

    But seriously, Lisa, I am very sorry that you had a miscarriage due to this illness. That sounded very hard and very, very unfair.

  14. swedeboy

    swedeboy Member

    I am wondering if the saliva tests for cortisol and DHEA are as good as blood drawn tests? I would like to have my Cortisol and DHEA levels retested before I take DHEA, but I am not sure which is more accurate, Saliva or Blood?

    Canary Club offers a convenient home saliva test (for DHEA, Cortisol, and Thyroid) that I am considering. I have always had these tests done by blood drawn analysis so I am unfamiliar with salive testing.

    Thanks, Sean
  15. Slayadragon

    Slayadragon New Member

    Can you even get cortisol test done by blood? That would seem not very helpful since cortisol varies so much over the course of the day.

    (My cortisol is naturally very low in the morning and very high at night. On average it is normal. If someone took a blood sample in the morning, they would say I'm abnormal.)

    Total cortisol output is usually done with a urine test, I think.

    Saliva tests measure cortisol at four various times in the day, giving an estimate of the total. Knowing how the levels fluctuate can be helpful (e.g. if you want to try to lower cortisol in the evening and raise it in the morning).

    DHEA and cortisol tests by saliva have been seemed fine to me (meaning consistent with my blood/urine tests and consistent with my subjective experience).

    I've never had a thyroid test done by saliva test. Does it measure T3?

    Regardless, many people treating CFS believe that prescription T3 can be given even if T3 levels fall in normal range, and this helps us.

    Dr. Cheney, on the other hand, believes that supplementing with any thyroid is a bad thing.

    If T3 is supplemented, care should be taken that a) T3 levels as tested do not go above the top of the reference range and b) that subjective feelings of high thyroid (overheated feeling, heart pounding, diarrhea, headache) do not occur.
  16. Slayadragon

    Slayadragon New Member

    That was a very long time ago. Besides, if I were going to sit around feeling upset about all the bad things this disease has done to me in my life, I wouldn't have any energy left to try to get rid of it.

    However, thanks for your very thoughtful note. :)

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