non-existent hormones (lab results)

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Aug 17, 2009.

  1. AuntTammie

    AuntTammie New Member

    I just had more blood work done and apparently I have so little estrogen and testosterone that the levels didn't even register in my blood....and my pregnenolone and DHEA are both low (they are precursors to the other two)....not sure if this has anything to do with ME/CFS (as a cause or effect), or if it doesn't, but some of the symptoms of both are sure familiar: fatigue, muscle weakness, overheating, hair loss, dry skin, weight gain, bloating, loss of muscle and inability to build new muscle, moodiness, pain, trouble breathing, etc, etc.

    The Dr said that since I am on the birth control pill (for endometriosis), he isn't sure about how to treat this problem. Normally he would use a topical hormone cream, but he usually uses that for patients not on the pill. I have tried many, many times to go off the pill, but have felt absolutely horrible (physically and emotionally) and have had periods that don't want to end, so I am not sure what to do. He told me that I would be a guinea pig if I stayed on the pill and added the topical stuff, and that does not make me too comfortable, plus the topical stuff is expensive and not covered by medicare.

    I suggested trying pregnenolone, since it is a precursor hormone and seems to be well tolerated by many people. He thought that seemed like something worth trying. So, that's what I am going to do, but for some reason this whole thing has me kind of freaked out.....maybe bc I am feeling like an androgynous freak, maybe bc it's just one more thing wrong with me and it seems that everything new I try makes me feel worse.....maybe bc it's just one more reason why it is so difficult for me to maintain a normal weight (& the harder it gets the more I want to revert to just not eating - & I know that would obviously be bad)....oh and maybe it's freaking me out, bc I have never had a Dr seem blown away by my test results before (he pretty much said that my body and its responses to several things - not just this - does not make any sense........the good thing, though, is that he does believe me and he does listen, and is willing to keep trying some new things)

    So, I was wondering if anyone else has had any similar test results and/or has tried taking pregnenolone, and what their experience was like?
  2. robin1667

    robin1667 New Member

    Tammy i was put on this by a new pain specialist just recently so I can't offer any help but will be following this thread. My adrenaline level is at an 8 and he said it is good between 7-133. I am the very low end too. Yours didn't register? Oh my gosh woman!
    Pain Dr said my Endo crinologist should have caught this problem since they deal with the hormone issues as well as Thyroid. Well she didn't. From what he said it will take some time for the level to come back up and before i notice a difference,but everyone is different as you know.
    I don't know anything about mixing birth contol with the cream sorry.
    We all have to try differnt things to see what works and what doesn't. I know it frustrating and tireing,your not alone there! I won't give up though i feel like it at times.
    Will let ya know how i am doing with it and please let me know how you are doing,.
  3. jasminetee

    jasminetee Member

    I've read that our hormones can fluctuate greatly so maybe they aren't always crashed. Mine were crashed according to one doctor and perfectly fine according to another.

    I've read that even the low-dose BC pill has more Estrogen than Hormone Replacement Therapy does. I'd be very concerned about developing breast cancer by doubling up on these therapies.

    That's great that your doctor was honest with you. I bet if he saw all of us he'd really be blown away! lol

    I don't know anything about Pregnenolone. Interesting it has the syllable "Preg" in it.

  4. SnooZQ

    SnooZQ New Member

    I've had to replace a lot of hormones also. My OBGYN said my levels were those of a young child ... I guess at least a small blip registered for me!

    I hope you will get a boost from the pregnenolone. I do well with extra Preg & DHEA as long as my thyroid hormone levels are good, but when my thyroid hormone levels are low, taking extra DHEA & preg can actually increase my pain.

    With Estro, Test, DHEA & Preg in the dumps, I'm wondering whether there may be other hormonal deficits. Have you had a fasting 8 a.m. cortisol test and/or SynActhen challenge? How 'bout complete thyroid panel.

    Cortisol would be extr impt to have tested as too low cortisol can cause life-threatening emergency. Sometimes low DHEA goes with low cortisol, but not always.

    Don't waste too much time on the freak business ... when the hormones are balanced better many of those concerns will evaporate.

    Congratulations on finding a doc who will work with you on this important issue. Improving your hormone status all-round may not cure your ME/CFS, however IME your overall energy should improve some, and perhaps also your pain level.

    One thing I've wondered for myself: I have a number of autoimmune problems & it was discovered at age 50 that I am severely gluten intolerant. Not sure whether it's celiac (I have one celiac child, 2 with wheat allergy), however with celiac it's not uncommon for there to be autoimmune endocrine problems that cause the kind of global low hormones that I've struggled with. Haven't had the tests for that -- it just seemed more straightforward to replace what was missing.

    Best wishes to you. Let us know how it goes!
  5. AuntTammie

    AuntTammie New Member

    thanks for responding....I will try to rememebr to post further about this, and I would like to hear how it works for you - I hope it turns out to work well for both of us
    hugs to you, too
  6. AuntTammie

    AuntTammie New Member

    they can fluctuate, but the ranges that the dr showed me take that into account, and having the levels this low is never good; non-existent is still way lower than the lowest they should ever be

    I agree with you about the cancer concerns, and yeah, a collection of the lab results of the people who frequent this board would be pretty startling, I'd bet!

  7. AuntTammie

    AuntTammie New Member

    I know that age is a factor, but actually my age is young enough that that's part of the reason the dr was so concerned....however, even if I were older, I should still have SOME hormones showing up
  8. AuntTammie

    AuntTammie New Member

    thanks for the info re: thyroid, DHEA, preg and pain - I didn't know about that possibility....I am on Armour, but have not been on it that long, so not sure if the levels are rt yet....however, apparently my reaction to that is not exactly what was expected either (though overall it does seem to be helpful)

    also I have been trying to get the cortisol test for quite some time....this dr is one who finally agrees with me that it is important; however, the place that he initially told me to get it from failed to respond twice to my today I was finally able to get a hold of one - will take it and hopefully get results quickly

    and yeah, I am very happy to finally have found a dr who seems to know his stuff and to be willing to listen to my input as well (and who actually believes in CFS/ME and FM)
  9. sascha

    sascha Member

    came out low-normal on everything. i've started treatment- 2 jars of cream that i apply- and my energy seems up. i've had cfids for going on 10 years.

    i'm wondering if your system would start getting the hormones that have been missing if you could stop the birth-control pills, and eventually your need for the pills would disappear. i don't know, of course, just wondering. it would be scary, though, to go off pills to find out. very tricky business. soooo demoralizing when we are laid low and feel awful. i know that all too well.

    perhaps another holistic doctor might know more than the doctor you're consulting? my primary-care physician is wonderful, but admits she doesn't have any background in many of the areas i'm exploring-- Very best to you- Sascha
  10. AuntTammie

    AuntTammie New Member

    thanks for the response!

    I have thought about going off the bc pills, but my Dr said that though they can affect hormone levels, they should not be affecting them this much. In other words, he thinks something else is going on. He is a holistic Dr, btw, and is not generally thrilled with having patients on bc pills (so he is not simply downplaying their effects, either). He does actually specialize in FM, CFS/ME, MCS, and bio-identical hormones, so for the most part, he has exactly the background I need....and I switched to him a few months ago after searching for yrs for someone who does know something.

    Anyway, getting back to stopping the pills, though, if that becomes an absolute last resort, I might try it again, but past experiences with trying to stop them have been unbelievably horrible. The reason I originally went on them was that things were so out of whack, from endometriosis, I suspect that my hormone levels were already pretty screwed up. If that's the case, it would seem that my body is unable to self adjust them to the rt levels. (and that was before getting sick, so I would think that it would be even more difficult for my body to try to correct things now)
  11. munch1958

    munch1958 Member

    Just wondering who you are seeing -- don't you live near Chicago?

    There are synthetic hormones in the pill. They do trick your body into thinking you are pregnant already. That's why you don't ovulate.

    But you should still have SOME estrogen and testosterone showing up on the tests. It is very odd that you'd register almost zero.

    I had a similar problem a few years ago and had many of the same symptoms that you have. I also have a very long history of endometriosis. Even though I was on testosterone and estrogen replacement therapy, my testosterone was a whooping 7 and my estrogen was very low too.

    In 2006, I was found to be deficient in growth hormone. Once I started supplementing HGH my hormones fell back into place. Do you know what your IGF-1 level is? Have they tested that?

    Pregnenelone did absolutely nothing for me. It didn't change my levels of anything one way or another. I tried it for 6 months but felt it was a waste of money. Others swear by it. Everyone is different.

    I'm very interested in what SnozyQ wrote about gluten affecting hormones. I've got an across the board suppression of almost every hormone too!

    The docs at Rush keep saying it's due to sarcoidosis. I'm not getting any positive tests back for Celiac disease but I sure do feel better without gluten.

    I like what Dr Shoemaker writes about MSH deficiency but wonder how his theory fits in with this. Many have said they don't feel replacing MSH either, it's not covered by insurance, and it's expensive. Has anyone tried MSH?

    It is clear to me that my hypothalamus is just not working right. The how or why is different for everyone with this crud.

  12. SnooZQ

    SnooZQ New Member

    What I was trying to say is that there is one severe type of gluten intolerance called celiac disease, which is an autoimmune disease.

    Celiacs have a higher risk (than the average nonceliac) of getting certain other diseases, esp. autoimmune disease.

    Certain autoimmune endocrine diseases are more common among celiacs than in nonceliacs. Some of those AI endocrine diseases can mess severely w/hormone levels.

    I haven't seen any research suggesting that gluten, per se, in a nonceliac person, would reduce hormone levels. And even in a celiac with autoimmune endocrine disease, I'm not sure that it's the gluten, again, per se, that hurts the hormone levels. Not sure whether that's been studied. My understanding is that celiacs have a particular genetic profile that causes them to have the autoimmune reaction to the gluten. The same genetic profile also seems to put the celiac at risk of endocrine problems.

    But anyone who thinks they have multiple endocrine issues, and who also has reason to suspect celiac or gluten intolerance, should probably be tested for both.

    I haven't had any positive test results for either celiac or wheat allergy, however I haven't had the biopsy & WOULDN"T, cause I'd need to do a gluten challenge. Having both of my kids w/severe gluten issues & finding for myself a very positive result from gluten-free diet is enough for me.

    Sorry that I can't comment on MSH, am ignorant.

    [This Message was Edited on 08/24/2009]
  13. zeowa

    zeowa New Member

    Would you be willing to share what hormones you had tested? I am looking to have blood work done and want to get them all in, but it's a little confusing b/c I understand some are best tested with saliva tests. Anyways, just knowing what to ask my PCP to put on the lab sheet would be of great help!
  14. AuntTammie

    AuntTammie New Member

    I do live in the suburbs, the dr (Dr Epperly) is by Stratford Square Mall, if you know where that is.....I am not sure if he is taking any new patients or not, but I can try to find out the next time I see him......the reason I am not sure is bc his practice seems to be very full - it took a real long time for me to get in when I was a new patient and it is somewhat difficult to set new appts....this may just be bc he actually spends a lot of time with each patient, though....also he does not take Medicare and is not cheap - the only reason I've been able to see him so far is bc my parents have been helping out, but I am not sure how long that is going to last - they can't really afford it either

    my growth hormone level is low, too, as are several of my hormones, but so far the only ones that are non-existent are the two I mentioned

    the gluten thing is interesting, but i did stop eating it for awhile and actually felt worse, so I don't think that is the issue for me

    and, I will have to read more about MSH - thanks for the links - I'm not familiar with it, but if it's expensive, I doubt I'd be able to do it anyway
  15. AuntTammie

    AuntTammie New Member

    so far I have had these tested: growth hormone, thyroid hormones (TSH, T4 and T3), DHEA, pregnenolone, testosterone, estrogen - these were via blood tests....the thing is that they were checked based on my symptoms, so they may or may not be the best ones for you to have tested, and there are so many hormones and they do so much that there are probably quite a few others worth looking at too

    also, I had blood and urine tests for cortisol levels in the past, and just this past dr visit was given a kit to do the saliva version (the saliva one where you test it 4 different times over a 24 hr period is supposed to be the best one....the only reason I had the other ones is bc I was seeing a different dr a few yrs ago who wouldn't do what I asked her to and insisted on the other kinds - those are stupid to use for the reasons that I wanted them tested, bc the levels are supposed to fluctuate throughout a normal day and those tests don't show if the levels are fluctuating properly.....they are dumb for another reason but I am too wiped out to explain that rt now - sorry)