Well, it looks like I can officially be a member...

[areles]

Hi, all. Here's my story, not dissimilar to many of those I've read here over the past three weeks, while lurking, waiting for some information that might indicate what exactly I'm dealing with here.

About three or four weeks ago, I realized I was losing a LOT more hair than usual. Once I realized it, I also realized it had been going on for about a month prior, but that it hadn't quite registered with me at first.

It's the usual story - hundreds of hairs in the shower, coming from all over the scalp, etc. Running my hands through my hair, coming out with ten or fifteen each time. And so on.

I immediately hit the internet, and kept hoping against hope that what I was experiencing was TE. Still, so much? And all at once? I mean, by the time I realized what was going on, my hair was noticeably thinner. I mean, inside of eight weeks it went from being too thick to be held by an average-sized clip, to being so scant that a ponytail at the back of my head was about magic marker width.

I made a doctor's appointment early on. He wasn't in, I met with his assistant, and she ordered some basic bloodwork. I knew it wasn't thorough enough, but I've dealt with her before, and knew there was no use in pushing it. I also knew to expect it would be normal.

It came back... normal, of course.

I got her to refer me to my derm, who basically said, "Try Rogaine. Sorry."

(I have to tell you, I am kicking myself like you wouldn't believe for, less than two months ago, casually mentioning to someone that my hair was my best feature, in order to explain why I've never done anything dramatic with it regarding extreme coloring, etc. I should have known... never let the universe know what you want, or love, or value, because it will take it away. I know that sounds cynical, but in my experience, in very meaningful ways, it has proven true.)

Anyway, I went in a week later and saw my actual doc. He confirmed that my hair was thinning (I was SO hoping he'd tell me it was my imagination), and ordered a more extensive panel of bloodwork, the one I'd been hoping for with the assistant.

Those results aren't in yet, but I guarantee they'll be normal, save perhaps some elevated testosterone.

In the midst of all of this, my research has been nonstop. I know all about all the types of hair loss, the indications of such, the causes, the potential treatments - both medical and herbal, the expectations resulting from each. Et cetera. I'd go into the details of why I was concerned about DUPA but not about areata, but I already know the punchline and there's no need to bore you all with the backstory. Besides, you all know everything I know. ;)

Anyway, I decided that I couldn't wait for my doctor to tell me my results (appointment on the 5th), especially since I also know he's not a specialist so wouldn't be able to tell me what I most wanted to know anyway - WHAT KIND OF LOSS IS THIS? So I cut out the middle man and called a local, and renowned, hair loss specialist who was willing to see me the same day.

He did the magnification test, which is the one I wanted. And he confirmed TE. He told me it would reverse. I heaved a sigh of relief. Then I very hesitantly, and fearfully, asked the question I was most afraid to know the answer to - but which I already did: "Are you seeing miniaturization?"

He answered in the affirmative.

It's amazing how calm I am now, but then, I guess I've always been the type to need the bottom line before I can start to cope.

He immediately suggested Rogaine and Aldactone (refusing to write the scrip, however, till he ran a Chem 7 on me). Told me to go home and research the latter.

I came home and told my husband, who pleaded with me not to go a medical intervention route just yet, to give my body time to perhaps deal with this. "You don't want to start taking pills and putting a bunch of shit on your head, only to discover it makes the problem worse."

Since he's always right about EVERYTHING, and since I'd already read regrets here re: Aldactone, I was inclined to agree.

I started using some home remedies to slow the loss rate (who knows if they have / will work), and started researching Aldactone.

Didn't take me long to discover that in recommending it, he was suspicious of one type of Alopecia I'd completely ruled out for myself - androgenic. Though I'd already started taking herbal DHT blockers "just in case", I didn't really think it was relevant since I was losing hair from sides and back, and since baldness doesn't run in my family ANYWHERE.

Anyway, I decided to not fill the scrip in the event he gave me one, to just give the TE time to reverse, and proceed as usual without freaking out.

Well, he called me today to tell me my potassium was good and he'd like to call in the scrip, at which point I asked him all the questions I had. "So, you suspect AGA?" "Yes." "Oh." "I'd have to take it for life?" "Yes." Etc.

Other questions from there, not relevant to my query of you all; the bottom line is I am one of those unfortunate souls, at 38, suddenly dealing with dramatic hair loss resulting from TE, and an underlying and far more insidious case of AGA. I trust this guy, and in any event, sense very strongly he's right.

Anyway, this brings me to why I'm here this afternoon, hoping for some counsel from you ladies, the women on the streets, as it were.

Right now I have not used any outside medical measures to deal with this problem. Neither Rogaine, nor Aldactone.

I know there are success stories with both, and I know sometimes neither helps anyone. But what I'm REALLY interested in are the negative stories. Not the initial sheds, but I'm wondering if there are any women out there who have used either or both of these products and actively REGRETTED it later? I've seen in the archives of the blogs that yes, this happens, but those entries and their comments seem to be old, so I'm wondering if there's any new experiences out there that you might feel like sharing.

Thanks for reading this, and for any insight you might be able to provide. I've got all the medical info; now what I really need is the REAL info. :(

[Tracy C]

But what I'm REALLY interested in are the negative stories. Not the initial sheds, but I'm wondering if there are any women out there who have used either or both of these products and actively REGRETTED it later?

There are many posts in this forum like that. None from me because these medicines helped me, but there are many.


I've got all the medical info; now what I really need is the REAL info. :(

Please forgive me for saying so but if you really wanted the REAL info, you would be open to the positive stories as well as the negative stories.

[areles]

Hi, Tracy. Of course I'm open to the positive stories as well; if my post read as though I weren't, that was not the intention. I asked for regrets specifically because in my experience, people are hesitant to rain on anyone's parade, and I would find it useful to know both sides.

Sorry, I'm just trying to navigate all of this. A month ago, I was fine. Today, I have noticeable thin patches (a few of which sent me sobbing out of the mall yesterday when I saw them under the fitting room lights), shed up to 500 hairs a day, AND have been told I have AGA on top of it all. So yay, even if the TE stops at some point, I'm still staring at the same fate. It is difficult to deal with, especially given the timing of myriad other negatives in my personal life, and I'm trying to figure out how to proceed with this without letting the depression ruin my life and without making treatment mistakes that I might regret later. Or regret NOT doing. You know? It's really hard. I feel like the next five years - or, at my rate of loss and lack of regrowth, the next year? two? - are dependent upon the choices I make right now, and I'm terrified to make the wrong ones. My husband is supportive, but his support appears to be rooted in denial, and he doesn't think I need to do anything at all about this. He thinks it will all right itself. So when I discuss treatments with him, I end up arguing for something I'm not even sure I should do, which is a weird and difficult thing, and has resulted in several arguments. My friends and family are like, 'oh, wow, that sucks,' without any real understanding as to how MUCH it sucks (though I suspect they'll have a better understanding once I can no longer conceal the loss).

I didn't go into a lot of whining about any of that in my initial post because I figured it's all self-evident. If we're here, we're dealing with the same thing in varying degrees, so I tried to keep it to the facts. And I also didn't want to get myself all spun up again, sobbing in my house alone. I'm trying to keep my wits about me. If it came off as abrupt and if I sounded like I didn't want any feedback at all other than negative aldactone/minox reports, again, that was not my intention at all. The more user experience, the better.

[Tracy C]

Sometimes posts in an online forum don't come accross as they were intended by the author.

I know the pain. I know about crying yourself to sleep at night. I know.

When I first started treating my hair loss, I didn't know enough to think I would regret anything. I just focused on finding a doctor who could help me. Hair loss runs strong in our family for both males and females (my mother is horse shoe bald). My only regret is waiting so long to start treating it. The sooner you start the better. You can only recover so much - and the longer you wait to start treatment the less you can recover. I waited too long. Although I did recover a lot of hair with Aldactone (Spironolactone), Rogaine (Minoxidil) and the laser comb, it wasn't enough, so I also had to have surgery as well. My hair is still thin on top but at least I look like a girl again. My sister is going through this too. Fortunately for her she started treatment sooner in life than I did. She had not lost as much as I had and she is responding as well to treatment as I did, so she will probably not need surgery.

You need to know that treating hair loss will put you on an emotional roller coaster ride. There are periods of accelerated shedding that are just devastating to experience - but you have to be strong and ride it out. It takes a long time and it is not easy but it is part of the recovery process.

[areles]

You know what terrifies me the most? That initial shed. I'm staring at the Rogaine and terrified to start the process.

But I know you're right, and I think that's why my docs are urging me to start both processes immediately - to try to save what I have now. It's just that shed, it's terrifying...

Of course, if I don't shed, then it's like 'yay', except it means I'm not responding, right? What a cluster.

How bad was yours when you started?

[Tracy C]

I'm staring at the Rogaine and terrified to start the process.

That is completely understandable. It is a devastating experience. Shedding is part of the process of recovery. The hairs in the damaged follicles need to shed as those damaged follicles are being repaired by the medicine. It stinks. It's unfair. But it is what it is. Shedding is associated with every treatment for androgenetic alopecia that actually works. Shedding is also associated with Aldactone (Spironolactone), Propecia (Finasteride) and low level laser therapy (the laser comb). There is no way to avoid shedding if you want to recover from hair loss.

I suspect that your hair loss is not as bad as mine was. By the time I finally started treating it I had already been wearing wigs for a while to cover my lack of hair. There is no shame in doing that if it helps you feel better about yourself during this difficult time. Maybe you don't need the full coverage a wig provides as I did. Maybe you could get away with simply using Toppik or Surethick or a similar cover up product. Again, there is no shame in using them - and they do help you emotionally.



Of course, if I don't shed, then it's like 'yay', except it means I'm not responding, right?

Not necessarily. How much you will shed depends on how many of your hair follicles are damaged - and how much damage they have suffered. The more damaged follicles you have, the more you will shed. The less damaged follicles you have, the less you will shed. It is possible that you might not notice any difference in shedding - but it is happening.



How bad was yours when you started?

As I mentioned above, my hair loss was probably more severe than yours is right now. To give you an idea, my hair loss was considered mild for a male but extensive for a female. I went through three periods of shedding during those first two years of treatment. To compare, my sister who is seven years younger than me only went through one period of shedding.

Shedding does stop eventually. When it does your hair will grow back thicker than it was before. If you go through more than one period of shedding as I did (I doubt you will), each time your hair will grow back a little thicker than it was before.

One more thing. Before you start using Rogaine (or generic Minoxidil), go out and get a bottle of Nizoral A-D shampoo. Following the directions on the bottle, use it in place of your regular shampoo every 3 to 4 days for two or three weeks. Then start using Rogaine and only use the Nizoral A-D shampoo once per week from then on. Make sure you are also using a good quality moisturizing conditioner.

It is very important to do your best to keep your mind off of it as much as you can so you are not stressing over it. Stress can cause hair loss. Stress can make hair loss that is already happening even worse. Focus on doing the things you love to do - and know in your heart that it is not as hopeless as you might think it is. There is no shame is having a good cry when you need to either.

[areles]

Thanks for all of this, as well as for the tip of the Nizoral. I wish I'd seen this earlier, as I just washed my hair (obviously I'm trying to avoid doing so more than every other day), with the intention of starting the Rogaine Friday. I suppose I can just push back the Rogaine to next week... I've already waited this long. What is the purpose of the Nizoral beforehand?

I'm also trying to figure out if I should dye it; it's been six weeks and it looks horrible, but I'm so nervous to put anything else on my head, though I've read all over the place, talked to my stylist friends, etc., and all indications are that it's safe to do so within reason.

Regarding the scope of the loss, you're correct in assuming that it's not super severe yet, though what is very troubling is the amount I've shed in the past couple of months - as well as the fact that loss of new hair has sped up significantly. At first I wasn't noticing any; now it's a LOT. Inch long hairs. I'm also getting clusters of four, the follicles just emptying themselves. The doc I went to last week (santamonicaskin.com) assures me that my follicles are healthy - aside from the miniaturization - but man, that's hard to believe. It's like my body is PURGING my hair, without any sort of shock event other than ongoing stress related to my former job, and then losing it. I did also lose someone extremely important to me on August 1 (so assuming that devastation impacted my hair the way it impacted my heart, the timing is pretty right on for the TE), but I've been through worse and this hasn't happened before. In the past month alone, I've gone from full scalp coverage to noticeable thin spots when I pull my hair aside (as well as just a few minutes ago noticing thinness at the top). It's just incredible, the speed with which this is progressing.

When I asked Dr Sean if the AGA has been an issue for years without my realizing it, he said yes, without hesitation. I suppose it's good that the episode of TE exposed it, but man, ignorance was bliss.

I will say that I've spent a lot of time looking at photos and I've noticed that the areas driving me batty right now - thinness at the temples and sides - have periodically been evident repeatedly over the years. A set of pictures with my hair pulled back will show thin spots, and then a set of photos a few months later show them fuller. It's odd. Perhaps lighter, unnoticed sheds exposed them, but then the hair grew back in and I thought nothing of it? At any rate, it's obvious that the miniaturization has been occurring for awhile.

One thing I'm not clear on, precisely, is the goal of spiro. Does it slow the progression of the miniaturization? This is one of the questions I want to ask the doc when he returns my call later today.

Thanks so much for all of this. Though my friends are patient (and wow, do I wish I hadn't told so many people what was going on! I probably could've gotten away with developing a penchant for headscarves, and ultimately getting a nice wig that no one would've thought anything of!), it's not really the same as talking to someone going through it as well. so thanks again.

[Tracy C]

What is the purpose of the Nizoral beforehand?

First and foremost it is to make sure your scalp is healthy and well prepared to start treating your hair loss. If there is any mild inflamation going on unseen, the medicine in Nizoral should take care of it. The active ingredient in Nizoral is a mild anti-androgen that may reduce DHT at the scalp and it may stimulate regrowth. The official jury is still out on that but many feel it does do that. Over on "The Bald Truth Talk" the guys keep referring to the "Big 3". The "Big 3" is Propecia, Rogaine and Nizoral. Also, the medicine in Nizoral does a good job of treating any possible irritation that may be caused from using Minoxidil.



I'm also trying to figure out if I should dye it.

I have also been told that it is O.K. to die it - if it is done by a professional. I do not die my hair because I am happy with my natural hair color. But of course I have thought about it from time to time. Anyways, when you are dealing with thinning hair and you want to die your hair, you want to chose a color that will reduce the contrast between your skin color and your hair color. Thinning hair is more obvious on a person who has very light skin and very dark hair. Lightening your hair color helps hide thinning. If you intend to start using a cover up product such as Toppik or Surethick, choose a hair color that most closely matches the colors those products are available in.



It's like my body is PURGING my hair, without any sort of shock event other than ongoing stress related to my former job, and then losing it. I did also lose someone extremely important to me on August 1 (so assuming that devastation impacted my hair the way it impacted my heart, the timing is pretty right on for the TE), but I've been through worse and this hasn't happened before.

It is very likely that these things were the triggers. As we age, stress can have a greater affect on our bodies. If your heart was affected, your hair was probably affected too.

I lost my job yesterday. Though I have been crying a lot, I am working very hard to not let this get to me. I have been in an almost zen state as I am making phone calls and what not to reduce my living expenses as much as possible. Believe it or not, just texting with you here in this forum has been helping me cope enormously.



One thing I'm not clear on, precisely, is the goal of spiro. Does it slow the progression of the miniaturization?

It acts as an anti-androgen by blocking androgen receptors from accepting androgens such as DHT. DHT is the hormone that causes Androgenetic Alopecia by miniaturizing follicles. So the purpose of Spiro is to treat the cause of the miniaturization, which is vital to recovery. DHT can also cause other problems such as facial hair and body hair to thicken in women just as it does in men, though usually not to the same degree.

Spiro is not appropriate for everyone though. You need to work with a doctor to determine if it is appropriate for you. It seems as though your doctor has already determined that it is appropriate for you. My sister and I are not having problems with it other than occasional leg cramps if we don't drink enough water during the day. If you are not drinking enough water now, start. Water helps keep us looking young and beautiful anyways.



Thanks so much for all of this. Though my friends are patient (and wow, do I wish I hadn't told so many people what was going on! I probably could've gotten away with developing a penchant for headscarves, and ultimately getting a nice wig that no one would've thought anything of!), it's not really the same as talking to someone going through it as well. so thanks again.

You’re welcome. This is what we are here for. If it helps, my family, friends and coworkers all knew from the start. With the odd exception of my mother, they have all been very supportive.

[Cassy]

areles
I am afraid i am one of the bad storys on spiro. However that does not mean you would be one. Most women will have menstral periods closer together on spiro. That is a good sign. If you stop your periods, bad sign. I would try the spiro and if you still have your periods give it a shot.