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My body wants estrogen, dislikes progesterone - conundrum

Discussion in 'Hormones' started by okcowgirl, Oct 3, 2013.

  1. okcowgirl

    okcowgirl

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    Hi
    I found this forum and am SO impressed by the knowledge base here. It gave me hope to post my conundrum in hopes that someone could help me to make more sense of my hormonal issues.
    Ok, here goes. I am 54 years old, have been on bioidentical estrogen and progesterone for years. This is because whenever my estrogen falls, i get very ill. I get typical and atypical responses. I get so many symptoms though, that life is really intolerable. Here is the catch though. My estrogen had tested low for years, as did my progesterone levels. Even when I was taking whopping doses off estrogen, it still tested low or low normal. (I was taking 150 mcg or more by patch ). Of course with these huge doses, taking progesterone would be in order - however, my body distinctly dislikes progesterone (my progesterone is extremely low at 28- with a reference range of 100-300, but whenever i try to take more, my body rebels - as I believe it takes it as falling estrogen and I get the same symptoms as i do when my estrogen falls.
    I have been diagnosed with fibromyalgia and believe I also have CFS, so that just complicates things.... I have had hormonal saliva testing labs (estrogens, progesterone, testosterone, DHEA, cortisol, etc done over time and am due to get retested soon.
    So......my conundrum is this. I am terrified that my progesterone level is so low, especially while taking such high doses of estrogen. I am just not sure of any other way to get a better balance to protect myself, since I get so much more ill when I try to wean off of estrogen or raise my progesterone. My gynecologist seems to be stumped. I am also limited for money for naturopaths, specialists, testing, etc as I am on disability now.
    I am not sure what I am hoping for here........insight, ideas, etc. All would be appreciated . I have been struggling with fibromyalgia for over 20 years but I still have hope that if I could balance my hormones, I might have some better success.
    Any input?
    Blessings
    Dawn
    On my more recent estrogen saliva tests, my estrogen was high at 17 with a reference range of 2-10, so i would obviously like to lower that. I have just started taking DIM and some other supplements. My DHEA is low at 2 with a reference range of 3-10. I have also taken DHEA in the last year in hopes of raising this.
  2. okcowgirl

    okcowgirl

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    Obviously the subject line was meant to say "my body", not "my dody" but couldnt figure out how to edit the subject line/thread title.....lol
    :confused:
  3. maryb

    maryb iherb code TAK122

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    okcowgirl
    what kind of estrogen do you take?

    Just pm a moderator they will change the title for you - Kina maybe ?
  4. Kina

    Kina Moderation Team Lead

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    The title has been changed now -- carry on. :)
  5. okcowgirl

    okcowgirl

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    Thanks Kina!
    Maryb, I am currently taking Estradiol 100 mcg patch and a 25 or a 50 mcg patch plus Estriol cream 25 mcg. The progesterone is 50 mcg USP micronized (when I take it) Right now we have decided that I will try just using progesterone for 10 days every three months.... which is a little scary. I also take DHEA (15 mg I believe- don't have that in front of me. That is off and on - off right now) DHEA has tested low but there comes a time when I feel like I need a break, so I took a break.
  6. Ema

    Ema Senior Member

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    Are you post-meno?

    Are you lowering your estrogen dose to reflect your latest labs? That's a whopping dose of estrogen.

    Progesterone intolerance/allergy is not all that rare though it is less talked about.

    Though first I would look at the form of progesterone...is it oral or a cream? Have you tried using another form?

    Have you had thyroid testing (TSH, FT3, and FT4)? What were the results of your cortisol testing and when was it done?

    Ema
  7. okcowgirl

    okcowgirl

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    Hi Ema,
    I have tried to lower my estrogen dose time and time again and just have no luck as I get very ill (stomach issues, weakness, high anxiety, of course hot flashes from hell.....lol, etc) I get so I feel like I have no quality of life. I have also tried taking higher progesterone to counterbalance the estrogen, but the same symptoms occur, with the added bonus off congestion and itching and "crashing". I have tried progesterone cream years back, but now it is oral USP micronized 50 mg. i agree - whopping doses of estrogen......:( . Feel between a rock and a HARD place.
    I did have thyroid testing a few years back, I would have to look it up, but tests were "normal". I know that normal doesn't always meant normal.......At the time, i had a good doc who trusted me and i tried a number of approaches with synthroid and hmm.....cant remember....lol. Anyway, I felt that I didnt seem to get much relief from that avenue of trials. Now I wish I had kept better records. i do have all my lab tests and kept a journal, but it was hit and miss, depending on how my illness was affecting me.
    I have had cortisol testing in the last few years - it was not great. My first cortisol test was very low morning cortisol with a value of 4 morning cortisol (reference range of 13-24), afternoon and evening were both low normal and the evening cortisol was fairly normal. Notes said: Depressed morning cortisol is suggestive of marginal HPA axis performance. Normal rhythms exhibit hghest cortisol value for the day at 7-8 a.m.
    Somewhere in there, I did a trial with Cortef but can't seem to find it in my diary. I do remember it not helping but can't remember if i had side effects or what my reasoning was for stopping it.
    My later cortisol testing was a little better (after DHEA supplementation) and BHRT. Morning cortisol was 13, but afternoon was elevated 11 with a reference range of 5-10. Notes said: An elevated noon free cortisol value is caused by a stress response to an emotional or mental situation, hypoglycemia or chronic pain and overt/hidden inflammation.
    I have been diagnosed with FM, so.........yeah, chronic pain.
  8. maryb

    maryb iherb code TAK122

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    okcowgirl
    I was just wondering whether you were taking a natural product or not. I was prescribed a natural cream by dr peat-field in the UK - he's a thyroid doc. Hormones are very complex and influence each other. they all need to be considered and tested as ema said (she's my go to too.......:)
  9. okcowgirl

    okcowgirl

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    Oh and Ema, yes I am post meno. Or at least I would be were it not for the HRT which brought me back to having a flow - since my progesterone had to be in cycles - to give me a break, since it makes me ill. After a while I had months worth of flow (four months at one time).......literally nonstop. I just had an ablation recently which seems to have taken care of that problem. Hopefully....forever.
    About 6 years ago, I had not had a period for a year, but then the low estrogen problems led me to HRT.......and on it goes.
  10. Ema

    Ema Senior Member

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    My first suggestion to you is to work with a skilled practitioner on this issue because (as you know) it is extremely complex. I have worked with Dr Dan Kalish in the past and I do believe that he has a good approach to and knowledge of hormone testing. He does phone consults and distance testing but he is not cheap. I think the initial consult is about $300 and testing would probably run you another $300. BUT he teaches constantly and he might take you on as a teaching case or refer you to a student he is supervising. It's worth finding out.

    http://www.kalishresearch.com/patients/index.html

    As far as my .02 cents, I think you are absolutely right to be concerned about having high estrogen and low progesterone long term. You're asking the right questions but you need to keep on asking them.

    I do believe you've gotten yourself into a pickle now with too high estrogen levels. It's covering up for something else that has gone wrong in the endocrine system more than likely which makes sense given your past cortisol tests.

    My first suggestion to you would be to look up your thyroid lab results. So many cases of fibromyalgia are really hypothyroidism. If the results are old though, I would consider getting your thyroid tested again (TSH, FT4, FT3, and RT3). It would be foolish to spend your life in pain if a little bit of thyroid hormone would get you out of it.

    Are you taking anything for chronic pain (no judgment)? Opiates in particular can do a number on your ACTH and thus your cortisol levels when taken long term.

    Your cortisol results from the first test are really quite bad. The second ones are slightly improved but still show that you have lost your diurnal rhythm - it's backwards, low in the AM and high at night. Do you have trouble sleeping? Trouble waking up? I think I would be taking basic adrenal support for sure - B complex vitamin, Vit C, possibly an adaptogenic herb like rhodiola or ashwagandha, and phosphatidyl serine.

    The next thing I would do is forgo saliva testing for serum (blood testing). There is much debate on this issue but after studying it in depth, I feel that serum testing is more accurate for women when on hormonal replacement. Saliva testing will almost always look high. Most labs haven't even developed accurate ranges for women on BHRT.

    Kalish uses saliva testing but I trust that he has done enough of these tests to create his own interpretation ranges. It may also be because the saliva tests can be ordered much more easily from a distance! But for most of us, serum testing is easier, cheaper and more accurate. As a post-meno woman, you can test on any day of your cycle. You should still use the luteal ranges, not the menopausal ranges though because the menopausal ranges are way too low.

    I really think it is a mistake to attempt to correct what looks like severe estrogen dominance with herbs and DIM. I think what has happened to you is similar to what happened to women on the Wiley protocol. Escalating dosages of hormones cause symptoms when you back off because there are more open receptors and they are all crying out to be filled. The internet is filled with stories of women who suffered horribly during a hormone washout period after being exposed to terribly high levels of hormones on that protocol. That's another reason that I think you need expert guidance to help get you out of this safely. The good news is that it can be done.

    As far as progesterone, you can also try progesterone precursors that are further upstream. You could try pregnenolone to start. Also, Vitex can help support progesterone but it is an herb that works very slowly and I'm not sure how well it works in post-meno women.

    When your body is used to having certain levels of hormones, it can fight hard against changes. People with low cortisol often have the hardest time tolerating cortisol replacement because their cortisol receptors are so exquisitely sensitive to the slightest drop of cortisol. All you can do is go low and slow in the direction that you wish to go and accept that it may take time (months) to get where you want.

    I'm sorry if this is not as positive or concrete as you might have liked. I do think you can turn it around; you will just have to be strong and patient.

    Ema
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  11. okcowgirl

    okcowgirl

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  12. maryb

    maryb iherb code TAK122

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    okcowgirl
    oh I feel for you on the back pain, me too - its so disabling on top of all the other stuff we have to cope with.
    I have to kneel on the floor to get into my base units if there's no-one around to get stuff for me - I usually don't bother... It does get too much sometimes. On a positive note my knees were so bad a few years ago I saw a specialist about them - he diagnosed FM - they did get better over time - its hard, we know we have to keep moving but when its so painful its not easy - hope you improve soon.
  13. okcowgirl

    okcowgirl

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    Thanks so much Maryb. It does help to think that perhaps this is a passing thing as it sometimes is with FM. One can hope....lol It also helps just to chat with those who better understand our daily challenges.
    Getting down on my knees to save bending is sooo much harder when my knees don't want to do the extra work to get me back up. Sheesh. 54 eh? I would never have believed this would be me. I used to train wild horses, now this.
    Hugs.
  14. maryb

    maryb iherb code TAK122

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    no I know when the knees are bad kneelings not an option:( I actually thought at the time I was never going to be able to kneel again but I can now. and I'm older than you if its any consolation:)
    hey me too with the horses - not wild ones though - I'm impressed:)
  15. lizw118

    lizw118 Senior Member

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    Hi okcowgirl,
    I see this post is old but thought I would chime in anyway. I have the same problem with progesterone. I cannot tolerate it at all. For a while I had a similar issue when I was taking estriol, which seemed to help my autoimmune symptoms and mood, but could not counter-balance it with progesterone, which seemed to undo everything the estrogen did. It was very extreme. I am peri-meno, though, not post.
    A couple of thoughts:
    Have you checked your SHBG levels? SHBG can bind to your estrogen and testosterone, rendering them useless. This is why you should always test your "free testosterone" or "free estradiol" instead of merely "total" so you can see if something is binding with the sex hormones. If you take thyroid hormones that can be cause high SHBG. Also, estrogen itself can raise SHBG levels.
    If you are taking any kind of topical hormones like a patch or creams you should not rely on saliva tests for hormone labs. Do blood tests instead.
    I took hydrocortisone for five years for adrenal insufficiency. I became reliant on it and wished I had never started it, fyi (I think you mentioned that somewhere?) I recently was lucky enough to get off of it when I got a vaccine that raised my IgG levels which somehow allowed me to stop taking it. Random.
    DHEA can raise the level of the type of estrogen that is associated with cancer (estrone) in my experience, if that is what you are worried about, so maybe stay on a low dose (5 mg). It's nothing to worry that much about, but estriol for instance never converted into estrone in my experience.
    I don't know why progesterone is so intolerable for some of us.
    Symptoms are always helpful while taking estrogen. If your breasts swell or you have break-through bleeding then you know you are unbalanced and taking too much estrogen.
    FYI frequent acupuncture has helped me with some of these hormone balancing issues. I have to go a lot though, like 3x a week for it to really work. So if I go to a community acupuncture place I can afford it because it is only 25 dollars per visit. I realized that acupuncture really only works if you do it a lot and it is generally overpriced. There are community acupuncture places all over the country and they are cheap, though. If I had to do it all over again, I would do that first for adrenal fatigue instead of hydrocortisone.
    Good luck with everything!
  16. okcowgirl

    okcowgirl

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    Hey LizW,
    Thanks so much for your input. I appreciate any and all input, of course! I have not been feeling well for a while now. and with Xmas and all, I have had no time to look into anything new, but will keep your post and check out the SHGB avenue, and perhaps others too, when I have time to re-read.
    Thanks again for your interest and ideas.
    Have a Merry Christmas and Happy New Year
    Blessings to you
    Dawn

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