Struggling with hormonal imbalance for the past year
by Jesse
(Charlottesville)
Around October of last year I really began to notice some changes going on in my body, and after seeing several specialists to treat various issues that seemed unrelated (and getting very little help out of any of them) I came to the conclusion that what was going on was hormonal changes causing my issues. Let me note that I am 46 years old and had an ovary removed when I was in my early 30s (removed due to a chocolate cyst from endometriosis). At the time I was told that would have no bearing on my going into menopause early and that the one I had should have adjusted and it quite possibly doesnt have anything to do with my current issues - just wanted to note it. I noticed first (last Oct of 2011) that my hair was thinning. I have very long thick hair that has always shed, but I could tell that it was changing - the texture and that it was getting thinner - particularly around the front, same place a male would thin. My dermatologist was really no help. She told me go home and count my hairs falling and come back. Well the amount of hair falling wasn't really any more than usual it just wasn't coming back in like it used to and seemed possibly being replaced by miniaturized hairs. I still have a good amount of hair now only because I had so much excess but I fear that in due time I won't be the only one who notices. I also just began to feel really 'bad' for lack of a better word. Just not like myself. I started looking older when I looked in the mirror. Feeling older. This all just started around last October and where most might not notice, but I did. I am very in tune with my body and health. I have always had large pores from acne as a teen, but this past year it has gotten VERY noticeable and very distressing as it looks awful. I had serious stomach disturbances which felt like an ulcer, and I was treated with Nexium. I have always had a tad bit of cellulite on belly and thighs, but during this time I noticed it just quadrupled over my thighs, legs, even CALVES, arms...its just the worst case of cellulite and even though its harmless, its hideous. I know that estrogen receptors can increase in size and cause or add to this issue and I feel that is exactly what happened. I can't get any doctor to speak to me clearly about hormones - they are horrifically unsympathetic and they tell me that if I am perimenopausal all they can do is give me synthetic hormone treatments and then dismiss me. There has to be something better than this. The mood swings, endometriosis has come back with a vengenance and one of the worst symptoms is SCALP PAIN. No one can tell me anything about why my scalp has been hurting off on and for almost a year. It doesn't stay in one place - it moves around, and usually during this time is when I also see hair loss. I have seen an endocrinologist and a gynocologist and they look at me like deer in headlights when I pleasd with them to help me with this horrible scalp pain. It feels sore in certain places like a tight ponytail has been in place (only it hasn't) and it will move to different areas on different days. I have read that scalp pain can be present due to hormonal issues and hair loss. That also leads me to believe I might be fighting a hormone issue. I just seem too young to be going through such a horrific perimenopause or full blown menopause. My mother was 52 when she started through this and I am only 46. I know that isn't terribly young for it, but I am just going through hell with these symptoms. I feel dead inside, no joy - life just isn't feeling like it was a year and a half ago.
I had my hormones checked by my gyno and they didn't bother to check progesterone levels even when I asked, She said 'we don't normally check progesterone" to which that point I got very irritated and said you know I am estrogen dominant (hence my years of fighting endometriosis) why wouldn't it behoove anyone to check my progesterone so that I can get a feel for the ratio of prog to estg? I just get blank stares out of docs when I am trying to do my own due diligence to feel normal again. I feel this might be a progesterone issue (as in not enough), but I am not sure.
Something important to note is that in 2004 I was fitted with a Mirena IUD. Now I know you probably will say those things are horrible and all my problem, however, after the first 8 months or so of getting it my endometriosis cleared up (I was in remission for over 5 years), my weight went back down to the weight of in my 20s, and I looked and felt as good as I did when I was 30. ANd this was when I was 38. It did so well for me I kept it 7 years instead of the usual 5 as I didn't want to screw anything up. At the end of the 7th year is when all these whacky things started to happen. I attributed it to the fact that there was no more progestins being secreted to counter any of my estrogen, so I was in full blown estrogen dominance once again. I gained weight, face broke out, hair started thinning, horrible thick periods that soaked those big hospital type pads....I waited about four or five months and couldn't take it anymore and went back for a new mirena IUD. I know that being eight years older now it may not do the great things it did for me before. I got the new one in April and I am still adjusting I guess as I have the scalp pain and hair loss frequently, and the stomach issues. I am not sure if the stomach issues are from the IUD or from all of the constant advil and advil PM i have been taking to treat my other issues. Since I have gotten the new Mirena IUD I dropped the six to seven lbs I gained almost immediately after the first one was taken out. Even my gyno said she clearly saw a correlation in my weight with the mirena and wihtout it (as in thinner with it). And this fluctuation occurred with no different eating or dieting on my part. Everything was the same. The weight came on, then simply went away after the IUD was inserted and in for a few months.
I don't know if all of this rambling is of any help to anyone to be able to be able to point me at least into a right direction for a solution. I am not sure that progesterone cream is my answer like it has been for some women as I tried it once before and bloated up like a balloon. I was also using it while on the mirena which was also secreting the synthetic progestin. I will add that my hormone lab tests BEFORE getting a new mirena suggested I was entering menopause. I might be crazy but I think my body was reacting to having it gone and that is why my FSH and TH was so high. Four months after mirena removal my FSH was 25.2 and LH was 30.7. Prior to removal at that seventh year I had it tested and i was only at 21.7 FSH and 16.9 LH. Having it removed definitely elevated FSH and LH significantly and in the eyes of my gyno I was in menopause. I had it rechecked after having the mirena in place for seven months this second time and it is now back to normal again with FSH at 9.39 and LH is at 11.56. The time that I seemed to be entering menopause was the time frame where the mirena was completely removed and had been out for four months. ONce it was placed back in and I waited a couple of months the FSH and LH came back down to a very normal level for a non menopausal woman. They only checked my progesterone and total estrogen once and that was recently after having the mirena in for a few months. Total estrogen was at 314 pg/ml and progesterone was at 3.1 ng/ml. I have tried to find resources online to help me interpret these readings to see how out of sync this ratio of two hormones are but not having a lot of luck.
I know this is a lot, but if anyone has any advice on what steps I should take next to try to rectify some of this I would be grateful. I am terrified of losing more hair. The scalp pain makes me feel crazy as nothing stops it. I even got a steroid drops from my dermatologist that should have reduced inflammation of that was the cause and it did nothing. I know that mirena has a side effect of hair loss but I never lost any (hair never looked better) the five/six years I was on it. It wasn't until that seventh year when the hormones in it were clearly gone that the hair fall started. I have attributed this to my body adjusting to having the hormones in mirena for all those years and maybe it is now trying to 'right' itself back with hormone production. Or at least that is what I hope.
Has anyone experienced ANYTHING close to this, or have any suggestions of what I might try next to try to piece this puzzle together and get my life back? I have been so obsessed with all of this since it began because this is the first time in my life I have just not felt healthy or like myself - both physically and emotionally. I just feel like my emotions are either flat and I feel nothing, or I get very weepy very easy as anything can send me to tears. I know that is a sign of menopause but my current hormone reading does not suggest that is the case.
Thank you in advance to anyone who bothers to read all this and even more if anyone has a suggestion or two.