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I lingered as premenopausal for about 5 years (I'm 53). Last February, I was having horrible hot flashes, night sweats, brain fog and fatigued. My annual check up labs showed my estrogen levels were...gone. Almost non existent. My dr. was a bit shocked. Meanwhile, my hair was just shedding like crazy although this was a process that has started some time ago. My eyebrows were already gone by this point.
I'm on HRT now and feel better and my hair shed has slowed but the damage has been done.
Very interesting, Jess—thanks for sharing! FYI I took BCPs for a couple months only back about age 20 and had pretty regular periods; am just officially menopausal. I have autoimmune conditions in the form of Raynauds and a “light” version of scleroderma, evidenced also about age 20. I do find the thought that there seems to be a hormones/autoimmune/environmental combo interesting. I’m still sticking with the skin care toxins disrupting our endocrine systems theory and this or some other similar environmental trigger the culprit.
Fyi also, I started accutane 4 weeks ago in the midst of a crappy flare losing hair at top of forehead along with very angry follicles. Distressing to say the least. Will make a seperate post in a month or so for a status report, but I have also added doxy and am cautiously optimistic that the follicles are starting to calm down. Am very hopeful for cessation of progression. Anyways, still so grateful for you sharing the google scholar alerts including the accutane study!
You're welcome! Definitely keep us updated. I was thinking about you the other day and wondering how the Accutane was going. Are you having any side effects? Also, does your insurance cover it? From what I could find, it looked like it's pretty expensive?
Jess, no side effects it seems tho this is a relatively low dose. (20mg, which is what the research study participants took. I will say I had and continue to have a little bit of blemish breakouts but they say that is normal as accutane clears out the pores.) My insurance covers it. I honestly didn’t even look at the full retail price but mine is just my copay at $15. And it’s not really accutane anymore FYI. It is under multiple generic names now but everyone still calls it accutane. I am taking a photo diary this week and wish I would have from day one, 5 weeks ago. I can eventually share the pics. Continue to be caustiously optimistic as there seems to be improvement even in the last few days. Praise God for a possible halting remedy for most of us! XO
I am convinced it is connected to a hormonal change. Mine began right around menopause...as did so many other issues.
I developed FFA after being prescribed an aromatase inhibitor. I have always blamed that for the hair loss so this research is interesting. Thanks for posting it. I am eagerly waiting to hear what the research at Guys turns up.
The possible link to Tamoxifen and low oestrogen is interesting Jess. I'm eagerly awaiting the results of the survey done by Guys hospital to find out whether this is the case, as I suspect it might be. I took Tamoxifen for 4 years following breast cancer surgery. Previous to that I had a total hysterectomy and had an HRT implant at the time of the surgery. After a year (when I was told the implant would wear out) I went to my GP to enquire about HRT tablets and was told that as I wasn't having any troublesome menopausal symptoms it wasn't necessary. I was 48 then and am now 66, diagnosed with FFA about 3 years ago.
it would be interesting to know how many sufferers on here have taken Tamoxifen and / or had ovaries removed with no HRT therapy thereafter.
No Tamoxofin or HRT for me. BC pills for a couple months only about age 20 then never again since and I am now 50. Among other changes I have made in my intake of food as well as products placed on my skin since awhile after FFA diagnosis is that I do my best to not drink or eat foods that have antibiotics or hormones.
I am convinced Tamoxifen was a key factor for me! It sent me raging in to an early menaoause. I haven’t been on it for at least 4 years but the FFA continues. At 54 I think I have the estrogen levels of an 85 year old!
I had my ovaries removed at 48 prior to menopause and went on hrt till.i was 54 , I was wondering wether the abrupt cessation of hormones was the catalyst for me getting FFA, I wondering if any research h is going into this or its " just a women's problem" thus insignificant
If the vast majority of women who have true FFA (by biopsy) are menapausal, then there is clearly a link. My doctor said "oh for sure they are connected, they just haven't found the connection yet."
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