hormone question for the ladies

Discussion in 'Fibromyalgia Main Forum' started by simonedb, May 28, 2010.

  1. simonedb

    simonedb Member

    hey anyone w/cfs had good luck with hormones? I went into menopause sort of early and tried estrogen a couple times and in low dose but didnt feel that great so didnt pursue. bioidentical form too.
    Any find it makes much difference and was it easy or not to tolerate?
  2. Misfit101

    Misfit101 New Member

    I dont have CFS ( thank God) tho i was given the dx. From reading here i dont think i have it. I do have fibro and am peri menopausal. After suffering terribly for years i went to my dr and told her to give me whatever she had. I didnt want HRT but couldnt take it anymore. She rx'ed me estradiol .05mg and medroxy-progesterone 2.5 mg. I still have my uterus...hence both drugs. I didnt think it helped with the heat but i missed taking them one day recently and i thought i was going to burn up! The bonus was my depression lifted almost immediately and my mood improved overall. My family noticed the difference. I still deal with issues that might be TMI for here. No improvement w the fog. Hope this helps a bit.
  3. SnooZQ

    SnooZQ New Member

    On tolerating estrogen ... Simone, if active form of thyroid hormone is low, estrogen replacement can make one feel worse, since the estrogen will tend to bind up some of the TH.

    I tried several forms of estradiol patch & had a great deal of difficulty tolerating them. Headaches & nausea. Then I tried a topical Bi-est cream but that seemed to have almost no effect. However I have done well for a number of years on a proprietary Bi-est "alcohol gel" topical formulation that has been used in Europe for decades, with good studies behind it.

    Another option to look into is an estradiol vaginal cream, which is great if you have some localized symptoms. Recent studies back up the experience of many women -- there can be systemic effects w/vag estrogen cream, for better or worse. It can be helpful for hot flashes for some women.

    FWIW, I do not think that low testosterone in & of itself is a primary cause of CFS. However, if testosterone is low, fatigue will likely be amplified.

    Many women suffer a drop in testosterone in the peri/meno time. Gals need a little Mr. T., and if it's low, we're gonna suffer in the energy dept. Low libido is another sign of low testosterone.

    I use a smidge of compounded testosterone replacement gel a few times a week. Can really feel the energy boost shortly after using it, and if I forget it, there is a noticeable downhill effect in energy & get-it-done type of motivation.

    Some docs refuse to test or RX for testosterone in women, but many OBGYNs are enlightened & will oblige. My doc was big on the potential side effects of T. replacement, but I haven't had anything major -- if I use a little too much, I can feel sort of aggressive & grumpy, but I've learned to avoid that with sensible dosing.

    Best wishes.

    [This Message was Edited on 05/29/2010]
  4. TigerLilea

    TigerLilea Active Member

    Hi Simonedb - I started on compounded Progesterone Cream last October and it has made a huge difference to my life. I am no longer "drop dead" tired 24/7, I don't get moody anymore, no more 3 to 5 week periods, and I sleep for at least 5 to 7 hours without interruption on most nights. For the past three years before that I was blaming everything on CFS. It never occured to me that I was perimenopausal.

    As I don't get hot flashes or night sweats I don't need to take any Estrogen.

    The only problem I had with the cream was that my doctor over-dosed me for the first six months. I went through four months of hell before my pharmacist realized that my doctor had given me incorrect dosing instructions. I was being treated for a sinus infection for two months that turned out to be a "hormone" headache. Once I stopped the cream for two months the headache went away. I now take a much lower dose and a one week break every three weeks and I feel GREAT!!

    Even though I now get a much better sleep at night, it hasn't helped my CFS at all. I'm still exhausted every minute of the day and the PEM is just as bad.
  5. victoria

    victoria New Member

    That's really quite interesting... since many have sinus problems here.

    I am low on progesterone so I know that's not "it" for me... but I wonder if other out of whack hormones could produce that. I'm estrogen dominant and high in testosterone & DHEA on top of it, naturally.

  6. hollie9

    hollie9 New Member

    Doxepin...This was given to me when I first got CFS for sleep, but then I went into menopause and I had no problems with hot flashes, moodiness or anything. I commented to my primary that I didn't even feel menopause, just stopped buying tampax. He said..."that was because I was taking Doxepin".

    I had previously been on prempro, bio identical hormones, small tabs of estradiol...not so much for problems I had but just that was the protocol then.

    Doxepin got me through it with zero problems, more women with menopause/peri should know about it.

  7. victoria

    victoria New Member

    a visit with a doctor who is well versed in bio-identical hormone replacement can be worthwhile, tho I have yet to find one. We are all so different. Many of us are estrogen dominant (no hot flashes, etc)... progesterone seems to be one thing almost everyone needs. I use it, but need to find out how much I really need. I have a feeling it's way too low, but don't want to experiment.

    (Years ago, before I found out I had endometriosis, I tried black cohosh since it seemed like it should address my problems - instead, it made everything worse as it is estrogenic. Endo was a new diagnosis at the time, only 1 year old... and no internet then to fully research. Well, none of the docs I'd consulted had no idea either so can't really blame myself.)
  8. TigerLilea

    TigerLilea Active Member

    It is recommened that you start with a 2% cream and then if after a couple of months you don't notice any improvement, or not enough, you go to a 4% cream. Also you want to be sure that you aren't taking it for anymore than a total of three weeks without a one week break. If you find that your symptoms are returning within the seven day break, my compounding pharmacist recommends taking it seven days on, then 1 to 4 days off and repeat that cycle.

    My doctor had me on a 10% cream for six months straight. After three months my progesterone receptors shut down. I have since found out that a 10% cream is overkill and should only be used when you need quick results, and never for more than two months maximum.
  9. victoria

    victoria New Member

    Thanks.... not sure how to translate that tho... what mine says is 1 "pump" of the bottle gives you 20 mg progesterone.

    (an aside: FWIW, when it's used on the face it has amazing anti-aging effects tho you can't apply it there every day obviously ;)
    ... best places I know are the thinner skin areas, I change every day to different areas at least)
  10. simonedb

    simonedb Member

    thanks for sharing your experiences, appreciate it!
  11. hermitlady

    hermitlady Member

    I'm also perimenopausal and definitely suffer from my fluctuating hormone levels. The FM and CFS symptoms are much worse during probably half of each month due to this. For the last 18 mos or so, my cycles are mostly only 21 days long...miserable in many ways.

    I had another batch of bloodwork done yesterday to check cortisol, DHEA, pregnenolone and a few other things. My doc said for me to go ahead and try 10mg Pregnenolone for 2 wks while awaiting my test results. He has other CFS pts that have been helped by it. I plan on starting this trial in the next few days.

    Any further input on this subject? Thx.

    [This Message was Edited on 06/04/2010]