1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Low Progesterone, Wacky Hormones and Out of Control PMS Symptoms

Discussion in 'General Treatment' started by TheMoonIsBlue, Apr 26, 2011.

  1. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    53
    Hello:D Haven't been around in a while.

    So I need some help from the ladies on here who may be having/had similar problems.

    I had the saliva test done for female hormones (11 vials throughout your cycle) and it showed pretty much what I thought In regards to progesterone: It is too low during the last half of my cycle. And there were some other things as well:

    My progesterone state:

    Following ovulation, the amount of progesterone released in the 2nd half of my cycle was on the low side.

    My estrogen state:

    The estrogen production by your ovaries is normal.

    My DHEA level:

    My average DHEA level is HIGH at 17 (ref range 3-10)

    My Testosterone level:

    Level was 20 (normal range 10-38)

    Progesterone to Estrogen balance:

    The balance of hormones is in favor of estrogenic activity with insufficient progesterone influence.

    The target range of Progesterone/Estraidol balance is 30-40, my level was 13

    ----------

    My questions I guess:

    Before my period, I am having such severe exhaustion it is like every system in my body is shutting down.
    Is anyone using bioidential progesterone? And does anyone else experience this kind of SHUT DOWN EXHAUSTION before their period?

    For those who can't tolerate BioIden Progesterone or Hormones, have you found any natural alternatives?
  2. Athene

    Athene Never give up

    Messages:
    1,130
    Likes:
    147
    Italy
    I don't knw the explanation for this, but I also go into shutdown/breakdown mode for a whole week before my period. I have all my normal symptoms, but so much worse. My morning cortisol is very low (4). My hormone profile was just about in the normal range but everything was on the very limit of normal.

    Your exhaustion sounds worse than mine, the only 2 times I have had it as bad as that, when I literally could not get up, was when taking a very low dose of nature-identical cortisol. So based on my experience, I would not do anything to interfere with your cortisol level. I think our bodies lower cortisol to fight this infection in some way and that it is better for us keeping it low.
    There was a thread about cortisol a while back, and I would look for that if I were you because not everyone had the same experience as me - some felt better on cortisol. I definitely think a careful reading of that looking at male vs. female experiences with cortisol would be interesting.

    I don't know why CFS makes our hormones do this to us, but I have had times in the past when my periods went totally haywire and I also had an extraordinary phase when I was 21, lasting a year, when my bust grew so humungous I looked like a porn star. My hormones had gone completely mad.
    I think this illness must be interacting with our hormones in some way, feeding off them or maybe stimulating their overproduction.
  3. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    53
    Hi Athene, Thanks for the reply. Sorry to hear you have had similar problems! These hormonal problems are bad enough, but added to this illness, it is a total nightmare. I've had bad periods ever since I was a teenager. Even when I was taking the BC pill, incidentally it was Yasmin (YAZ) which is marketed now for PMDD, I was out-of-control emotional during my period.

    My test results aren't even that abnormal. I figured my progesterone was dropping before my menses too low. But-I don't know what to do. I actually took bio-idential progesterone and testosterone years ago when a doc took me off the BC Pill to try to get my hormones balanced. All I remember is my body freaking out when I stopped the pill and getting symptoms of PMS 500x worse. Then again, maybe it was the bio-identicals and not stopping the pill which caused the freak out.

    All the stuff I'm read says that the progesterone cream you can buy online, made from wild yams, really does not even convert to progesterone in your body?

    I really don't know if I can physically make it to the doctor to see about bio-identical progesterone from a compounding pharmacy. I am so ill and disabled now, riding in the car makes me violently ill and no on ever really has any answers for me since I am without an ME/CFS doctor now and have been for some time.

    Has anyone tried a product called "ProgonB" by Bezwecken? I was thinking, I might try that.

    I think you are so correct, that this illness is interacting with our hormones or feeding off them. Which is why I'm scared to take them! The shut down full body exhaustion is almost idential to when I had severe mononucleosis,which incidentally set off this whole illness. Like full blown active EBV.

    LOL about your "porn star" boobs! That is wild to have happen at age 21! Did they shrink again ? LOL Where you ill at that age (with ME/CFS) Wonder what in the world caused it!
  4. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    I have the same: sick, exhausted, anxious, and depressed the week before period. In my case I think it's the low estrogen.
  5. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    53
    Hi Leaves, have you ever tried any medications or supplements to help raise your estrogen level?
  6. Athene

    Athene Never give up

    Messages:
    1,130
    Likes:
    147
    Italy
    Hi,
    I went on the pill briefly. I lasted for nearly three months then gave up, as it made me so ill and also totally mad. Honestly, I was becoming a crazed axe murderer type. I have never accepted any hormone related medication since then. I am scared of hormones!

    Luckily my bust shrank back to normal!!! after a year or so. I was terribly ill with CFS when it happened, it was the beginning of being too ill to function. I ended up bedridden and not even able to speak for the next year.
  7. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    53
    I'm scared of hormones too :( I'm not sure what I'm going to do.
  8. Lala

    Lala Senior Member

    Messages:
    317
    Likes:
    57
    EU
    Hi girls,

    I have the same problem and I have always had it since my period started. Whole week before I feel much worse and one week during, too. Then two weeks better and again. One immunologist told me the pill is influencing woman immune system by increasing estrogen, so then we are more susceptible to infection. I really would like to know what can be done for this crazy PMS....
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,404
    Likes:
    4,133
    Sth Australia
    My hormones can make my CFS/ME worst eg can make my IBS flare up.. to top that off in recent years, I also developed Premenstal dysphoric disorder (PMDD). Having CFS/ME long term, has so messed up my hormones.

    Im estrogen dominant (Ive got cystic ovaries due to excess estrogen).. so got put onto Natural progesterone (via a cream) from the compounding pharmacy to try to balance my body. That didnt give me any side effects but didnt help me in any way either.
    (In past before I got CFS/ME I tried taking the mini pill .. progesterone.. and that made me so crazy I ended up in a mental hospital due to being on it, so it was scary trying natural progesterone).

    I also have low cortisol and testosterone but having supplementation for these didnt help... and the testosterone gave me side effects.

    So in my own case Ive had no luck with being helped by taking hormones Im deficient in.
  10. Athene

    Athene Never give up

    Messages:
    1,130
    Likes:
    147
    Italy
    It seems several of us have had horrible and non-typical reactions to hormones. I'm interested that Tania got mental problems like I did - I guess I was lucky mine weren't as extreme as yours.
    I would be very interested to see some research on hormone treatment in CFS. It really seems we react abnormally to female hormones.
  11. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    53
    This is insane. My body is acting like my hormones are toxins. That is what it feels like. The fluctuations of hormones, or whatever the fluctuations are doing (activing viruses, etc.) are making me feel like I am at death's door.

    Yes there needs to be research done on hormones and ME/CFS. Obviously, for some women this is a major issue. I don't know what to do. Like others, the BC pill made me feel crazy.

    I have barely been able to open my eyes for more than a few hours at a time for the past 8-9 days. That was pre-menstrual. Now comes the menstrual cycle. I feel dead. Completely dead.

    This feels like an extra torture on top of the ME/CFS. I'd rather just go through menopause now than deal with this for another 20+ years.
  12. Lala

    Lala Senior Member

    Messages:
    317
    Likes:
    57
    EU
    I am just in the middle of this crazy week, too. My mother gave me some primrose oil to try and told me it should help with woman's problems. Did anybody try that? I always get very angry also just before period starts and during it....

    I wonder if it is possible that our hormones somehow feed some pathogens and everything gets worse then.
  13. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    324
    Southern USA
    The right balance of the right kind of bio hormones is important for so many reasons. My CFS doc told me about Dr. Dzugan. It has been a wonderful program for me. My problem was horrid migraines for many years. I can not take any migraine or pills for pain so I had to deal with them, more and more often.:headache: Threw up all the time, not fun with a full blown migrain. All of my docs, even a hormone specialist were no help.

    Dr. Dzugan had the migraines gone within a few days.:thumbsup:
  14. Lala

    Lala Senior Member

    Messages:
    317
    Likes:
    57
    EU
    Also, do you, girls, have heavy and very painful menstruation like I do? That is horrible, too. I agree with TheMoonIsBlue that it feels like extra torture on top of the CFS.
  15. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    53
    Hi, I have read about Dzugan online. But I am not sure what those tests are going to offer me in addition to what I have already had done. I had the saliva hormone test where they test 11 vials throughout your cycle. So it shows your different levels of hormones are different stages in your cycle. If you see my first post, my DHEA is actually high. Testosterone is fine. Estrogen is fine. Progesterone, on the low side towards my menstrual cycle which is typical in women with PMS. I had the Adrenal stress test. I had a full thyroid panel and not just TSH.

    It seems like I actually an excess of hormones in my body! (not including progesterone) My face is breaking out like I am 14 years old again! :(

    From what I am reading about PMDD, it seems that your neurotransmitters are affected.

    I am glad Dzugan helped with your migranes! I know a lot of the testimonials have to do with migraines. Exactly what blood tests does Dzugan do hormone wise that isn't available elsewhere?

    I don't think I am a typical case of just having out of wack hormones. I am very virally ill with ME/CFS, sudden onset with on going viral infections and I feel that the hormones are interacting with the viruses.

    I didn't always have such insane PMS, it has gotten worse the more ill I have become. I have also taken Bio-Identical in the past and had no benefit actually I had side effects. I don't know if adding in BioIden Progesterone is going to help or hurt. If it is a matter of hormones making the ME/CFS worse than I wonder if anything will help short of stopping my periods completely.

    My body is literally shutting down like I am about to die before and sometimes during my period. This is not a typical reaction even in women who have severe PMDD but I believe something unique to women with ME/CFS with viral infections.

    Frustrated.

    P.S. LaLa- Some women say that Raspberry Leaf Tea helps with menstrual cramps. Traditional Medicinals makes a RLT that has a lot of positive reviews. I think you need to drink 3-4 cups a day for the anti-cramping effect.

    I am interested in this product called ProgonB but I haven't gotten any replies from people who have tried it. It has positive reviews online but it is impossible to gage what will be helpful when none of the people writing the reviews have ME/CFS and many are pre-menopausal.
  16. Athene

    Athene Never give up

    Messages:
    1,130
    Likes:
    147
    Italy
  17. lucy

    lucy Senior Member

    Messages:
    102
    Likes:
    2
    Sorry to hear you are suffering such terrible periods. I once enjoyed this blog post about the bad behavior of the uterus.
    I had troubles as teenager (the flow would be as blood corridor scene in the movie "the shining"), but now it is much more reasonable with me.

    I was reading somewhere that estrogen interacts with vitamin D receptors and as we know vitamin D is a bit of a problem in CFS, so the symptoms could be consistent with vitamin D deficiency. It could be one of the reasons the CFS hits women more often then men (this fact is not proven statistically yet, isn't it?).

    Another thing - mint tea can be used to lower testosterone (not men's tea!) and many sources mention it helps with polycystic ovary syndrome. In general the warmth of the tea was my savior against pains and cramps, but it also increases the flow - and I was constantly anemic.
  18. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    53
    Lucy, that excessive bleeding sounds awful! I am guess I am *lucky* in that respect.....I really do not have heavy or prolonged bleeding or very bad cramps.

    It is the debilitating exhaustion that comes before and during my period that is unbearable. I mean I feel close to death. It is not normal.

    But what is with this illness?

    I didnt know that Vit D reacts with estrogen. I react very badly to Vit D.
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,404
    Likes:
    4,133
    Sth Australia
    I forgot to mention my reaction to insulin as well in my other post. I have hyperinsulinemia too and insulin can also send me crazy (so much so Ive smashed things when Ive got my insulin up) so I can hardly eat carbs at all even complex carbs. Its like I have MCS to my own hormones umm which actually kind of does make sense for if we are sensitive to chemicals.. why wouldnt some of us also be oversensitive to our own natural ones.

    One would think with ME/CFS affecting a lot more females then men... that they would be studying the hormonal side to things more. Why do more females then men get ME/CFS?? There is something important to be learnt in that area.. ***sighs***
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,404
    Likes:
    4,133
    Sth Australia
    I've tried primrose oil but it did nothing at all for me.

    One thing which did work thou.. is calicum 1200mg taken every day can help PMS (there has been studies done on that). That did even help my PMDD (very severe PMS) some thou it stopped working if i started missing doses and did take taking it daily for 2-3 mths before it started working. I tested it on and off over a year and it certainly does help my female hormonal cycle moods.

    I wonder that too... they certainly are doing something.

See more popular forum discussions.

Share This Page