Many years ago I read that it can take 6 or 7 months to see the beginning results from spiro. Unfortunately, I don’t remember where I read that. It could have been in Redmond’s book, Hair Route or AEA’s journal.
Oh, also, I don’t think I mentioned this here, but in my blood tests my testosterone level came out on the high end of normal. My doctor said this was because I was on birth control when I was tested, and that if I had been off the BC, it would have tested high. Obviously I still have a problem with testosterone because my hair is still growing, but the BC and the Spiro are both hopefully addressing the problem. But, I don’t have crazy high levels of androgens. It doesn’t make total sense to me why my hair would still be getting worse if my testosterone is normal (I know you can also have follicles that are just very sensitive to testosterone, but I think that if that was the case I would have had this problem since puberty, which I haven’t) but I trust that my doctor knows what she is doing. She is a reproductive endocrinologist at a women’s hospital, and one of the center’s specialties is PCOS and hirsutism. So I feel like I can trust her information.
Okay, now I’m getting a little better grasp on your social life. I was in college for a couple of years and was bored out of my wits. Bars weren’t my scene because of the noise and the smoke, and people acted like idiots (only a sober person would notice!). I just couldn’t stand it. I was very bored–which is why I left college. The work wasn’t that difficult, but… yeah, there was nothing else to do.
There’s not much more I can say that I haven’t already. If you trust the doctor you have, then that’s that. If you are more in the beginning stages of PCOS, it’s not so bad at first. Untreated, it definitely gets worse. Definitely. Spiro and Yasmin alone will help some but it just may not be enough. It takes several weeks on non-PCOS women before they notice a big difference; it will take a lot longer for you probably. My skin looks a lot more youthful now on Spiro–looks really good. Hang in there.
And no, you would not necessarily have had androgen sensitive follicles at puberty. I certainly didn’t. And I don’t have PCOS and never did, and I’m very slim. Hirsutism just happened to me with age, is all. Totally different story for you and I hope this gets treated properly before it gets worse.
We weren’t trying to lecture you hun or I certainly wasn’t. I was more just commenting on that some Western cultures do have a focus on alcohol and if your a student, hell it’s even more and hey if it’s only a couple of pints - certainly is a small amount compared to others.
But anyway, I hope this goes okay and keep us updated.
Regards,
Benji
So I just met with my endocrinologist again today. I have always kind of had a small feeling that she is not very experienced, though I assumed she had the right knowledge since she specializes in PCOS and hirsutism. However, when I have asked her questions she sometimes gives strange answers, or answers that don’t match up with any research I have done online (and I have done A LOT!) So today I met with her to talk about how my spironolactone and yasmin were working. This in itself I thought was kind of weird-- why did she want me to make an appt. within 5 weeks when it takes much longer for the drugs to work? But I went along with it.
Well, today, she told me that my hair is too fine, although it is NEW and EVERYWHERE, and that the spiro will do ABSOLUTELY NOTHING to the hair because it is not as coarse as a man’s hair. She says it won’t even stop new hair from growing. I said I didn’t understand how that made any sense, since I am confirmed to have PCOS and high testosterone, and these problems started rapidly in the 6 months or so before I was diagnosed (which was in March.) She said it may just be genetics. I asked how it would be genetics if it was so sudden and rapid and coincided exactly with one of the symptoms of PCOS! She said she was stumped by it and “at the end of her expertise.” My body hair is NATURALLY fine, my arm hair is fine, my normal body hair is just naturally a fine texture! But I have started to grow it EVERYWHERE and that is why I first went to see her. Now she is telling me it’s not hormone related? Even though I have PCOS? And that even though the hair is new, dark, and progressing darker and longer and spreading to new areas, the spiro won’t affect it in ANY WAY whatsoever? Yet she still wants me to keep taking it…
This seems to conflict with all the research I have done… yet she is an endocrinologist who supposedly specializes in this… but she is young and maybe has not been a doctor for long. I don’t know where I would go to get a second opinion since this is the specialty center of the city!!! But do you think, from your experience , that she is wrong? Do I have any hope? Or will just get hairier and hairier and have to shave my whole body every day for the rest of my life??
Another thing which makes me think she might be clueless is that she told me not to start shaving any new areas. At first I thought it was just advice based on how I would get stubble if I shaved and would have to keep it up, but then she said something about how I “wouldn’t want to stimulate any new hair growth” and how whenever I decided to go for electrology I should talk to the electrologist about shaving vs. not shaving. This made me do a double take!! Shouldn’t she know better than that??
Yes, she should know better, but in reality, medical schools and the residencies that follow thereafter, do not teach such facts. She could benefit from a hairfacts/hairtell education, but I’m sure she has very little interest or time in hanging out here. I’m actually very embarrassed for her.
You could write her a personal letter and guide her from the patient’s side of the fence about your experience. She may be amenable to this approach and you would be doing her such a favor, if indeed she is young and just starting out.
There is always hope. Keep learning all you can, so you can be a part of a plan, with a competent doctor, that will manage your specific needs for this condition. You need to look at this with the same vigor and effort that one takes when they buy a stock, mutual fund, car, house, etc. You saw the pitfalls at this doctor visit, so your research paid off.
How did you find this doctor?? Was she recommended? Do you belong to a support group? If you do, then perhaps some in the group can recommend other specialists. You can run an online search for PCOS and pinpoint authors, researchers or hospitals who specialize in treating women with PCOS using the PubMed database at www.nlm.nih.gov. Search the American Board of Medical Specialists. There are 24 specialty boards listed. If you go to your local library, you can get a copy of a directory of Board Certifies Specialists or go here: www.abms.org/login.asp
I think this doctor lacks experience. There are several centers of research in Pennsylvania. I count eleven doctors in a publication I have on hand. You can order the MediFocus Guide to Polycystic Ovary Syndrome at www.medifocus.com. I think I paid $35 for it a year ago? It would be a great resource and a comfort for you while you sort this out, as it is full of helpful information.
Keep moving forward and don’t let one doctor make you feel more hopeless.
Dee
Thanks dfahey. I am not totally sure how to use the PubMed link you sent me to find a doctor… but I have been searching on google also. Unfortunately I have no transportation so I am pretty much limited to doctors within the city, to places I can get on the bus. I live in Pittsburgh. I was seeing a doctor at the Magee Women’s Hospital but I don’t think I should continue to see her, or anyone else in her department (I imagine they would have many of the same ideas.) I don’t know, maybe she is truly right, but it just doesn’t make much sense to me at all. I also looked at my blood test results and she didn’t even test my insulin or do anything to check my thyroid!
Yeah, that’s why I said you should get a 2nd or 3rd opinion, but you said you trusted her and I didn’t want to seem bossy! 
There are many doctors who don’t know enough about PCOS. But an endocrinologist should have tested your insulin, for crying out loud. That is just a no-brainer. Thyroid should be checked also. The shaving thing–I am surprised she said that. But anyway, this woman clearly knows almost nothing about hormones, and doesn’t even know how the medicine she prescribed works. Wouldn’t one want to be educated on a medication before actually prescribing it? Sheesh.
Keep looking, and keep us updated. You may be hairy right now, but you’re not hopeless. Your journey will help many others along the way, and will help lurkers here who are looking for hope.
Hi-
I have taken aldactone before and wanted to offer my experiences here. First- It is CRUCIAL to have an gyn who is experienced in handling PCOS patients… too often doctors think hair is a ‘cosmetic’ issue, weight gain due to bad diet, etc… To get a dr that is experienced in handling women with pcos is an amazing head start- especially since there is such a variety of symptoms.
I took aldactone for a year- seeing only a slowing of the hair growth- not a reduction or elimination. What it did was allow for me to go longer in between shavings- but that was about it. I quit after I STUPIDLY went into the sun while on the medication… and I discolored my face pretty bad- the kicker is - my face was really discolored where I shaved- and even though I have been off of aldactone for over a year I still have the discoloration
For me- staying on birth control is crucial- I hate it - I hate ‘acting like a girl’- but I try to be open and honest with those around me- and I tell them to not let me be too bitchy.
I do not take metformin. I don’t have any insulin issues- though other PCOS women in my family do. I do have to be very careful about what I eat- and I am still not a skinny girl. I never will be a skinny girl and I am ok with that.
I have tried Vaniqua too- and it had pretty much the same result as the Aldactone- a slowing of hair growth- but that was about it.
I hope this is helpful… and if you have any insight on how to deal with skin discolorations I would love to hear them
thanks guys. as soon as the semester is over i plan to find a new doctor. it is disheartening that i found my current one at the supposed best center in the city for pcos… but what can you do. coffeegirl, do you think spiro will affect the fine hair? at this point all i want is just for the spreading to stop… and it would be great if it grew slower too… also i never heard anything about spiro discoloring skin. i am in the sun a lot and it hasnt happened yet… but its not summer yet either…
Hey there~ At first I didn’t notice anything at all with vellus hair. Over time though, there is a lot less of it. I didn’t really care about it–it was blonde. But yeah, it just sort of kept getting shorter, I guess you could say? It doesn’t grow as long (it never was that long at all but now it’s really shorter).
Spiro works a lot slower on some women than others, but over time it does work. It’s cumulative. First, things slow down. Then, the hair pretty much stops growing (though terminal face hair is STUBBORN and really needs electrology). I never had but vellus hair on my body, except for legs etc., but my body is really smooth, with the exception of my legs. The soft fuzzy hair which never was an issue anyway, is gone. Just… gone. That took a couple of years, though.
I’ll tell you this. My head hair grows like craziness. As a teen and in my 20’s, it took forever to grow. Now it grows like 2 inches per month at least. My hair will likely be waist-length by Christmas, and I just had it cut to my shoulders a few months ago. Also hair sprouted in places around my hairline where hair hadn’t been before. Funny how it’s the complete opposite of my body’s hair. I could be like my Amish neighbors, whose ladies have hair down to their feet and dragging the floor like the train of a wedding gown. Ah, but no.
I have read that insulin should be checked frequently because one time things might look just fine, and another, you’ll have an insulin spike or drop. All I know is that most gals who have PCOS are on Metformin. Now I thought that PCOS had everything to do with insulin. But maybe I’m just a dumb girl.
Birth control isn’t totally essential here, but you don’t want to get pregnant on Spiro. Some girls don’t do well on Yasmin at all, and getting off has not affected hair in a negative way.
My gosh YES Spiro will make you very photosensitive. If you don’t see it now, rest assured it will haunt you later. Wear avobenzone sunscreen. Titanium dioxide and zinc oxide are good sunscreens, but they clog pores like crazy and look white on your face.
my head hair already grows super fast… sucks that spiro might make it grow faster, since it’s hard to keep up with haircuts, but that’s nothing in comparison if it actually helps my body hair. but it’s good to hear that spiro had some effect on your vellus hair, even in the long term, because it means my doctor is WRONG that it can’t possibly help hair that is not thick and dark (i don’t believe that my excess hair growth is actually vellus, but it’s not thick, coarse, and jet black either.) but i was worried for a while that i might actually have hypertrichosis and it might be caused by something else altogether. either way i am going to find a new endocrinologist.
i wish that someone had told me about sun and spiro… i will believe you if you say it’s true, but i haven’t read it in ANY of the literature about spiro and my doctor never said anything. it seems like a big deal! i never wear sunscreen because i like to get tan in the summer… that makes me sad because i always love so much to get summer color… 
but i guess it’s better to wear sunscreen anyway so you don’t get skin cancer. i hope i can remember to put it on. can you get moisturizing lotions that have that type of sunscreen in them? because i put lotion on my face and body every day so that would be a good way to remember to do it.
i noticed something strange today, which i discovered by accident. the hair on my upper back will come off in my fingers with light pulling (very little force. nothing like tweezing.) not all of it of course but more than i would expect. is this a normal aspect of body hair or does it mean the spiro may be doing something to my follicles? i tried it on some “normal” hair (lower arm) and nothing came free. i cant say i have ever noticed this to happen before. it seems unlikely that the spiro would do much this early but i was just wondering.
Here’s a copy and paste:
* This medicine may cause your skin to be more sensitive to sunlight than it is normally. Exposure to sunlight, even for brief periods of time, may cause a skin rash, itching, redness or other discoloration of the skin, or a severe sunburn. When you begin taking this medicine:
o Stay out of direct sunlight, especially between the hours of 10:00 a.m. and 3:00 p.m., if possible.
o Wear protective clothing, including a hat. Also, wear sunglasses.
o Apply a sun block product that has a skin protection factor (SPF) of at least 15. Some patients may require a product with a higher SPF number, especially if they have a fair complexion. If you have any questions about this, check with your health care professional.
o Apply a sun block lipstick that has an SPF of at least 15 to protect your lips.
o Do not use a sunlamp or tanning bed or booth.
o If you have a severe reaction from the sun, check with your doctor.
I never wear long sleeves or great big hats in the summer (are you kidding??) but I do wear the avobenzone sunscreen, which is a great moisurizer by the way, and I wear sunglasses. I am very fair skinned so I would say I am probably more prone to skin damage than you are. On the bright side, I look about 15 years younger than I really am because I protect my skin from the sun. A friend of mine exactly my same age looks leathery and old now because of all that tanning. So sunscreen isn’t a bad thing. Tanning–all that is, is your body protecting itself from the sun’s ray’s harm. It’s a defense mechanism that has only in recent times been considered “pretty”. Okay, end of lecture!
Oh, the hair. It might be the Spiro making it come out easily. I don’t know. Since normally clothes would rub hair off by friction, you wouldn’t notice it as easily as when pulling on it. I am curious to know if it keeps up. Mine disappeared, but it was under clothing which likely rubbed it off. ??
Keep us updated on that!
i hope that those directions err on the side of caution, because there is no way i am going to sacrifice my summer just because i am on spiro… of course i will start wearing sunscreen… but i’m not going to wear a big hat all over the place and never go anywhere outside between 10 and 3! so i hope the sunscreen will be enough. i have pretty light skin but have never had a problem with sunburn or light sensitivity so i am hoping the spiro won’t make it super bad. i will start wearing sunscreen though… i don’t want a discolored face. do you know if there is any rhyme or reason to where it may discolor? i noticed that the previous poster said it got discolored where she shaved. i don’t shave my face except to shorten the fine peach fuzz, and that’s just with an eyebrow shaper. i wonder if this will make any difference.
also, i think the way that my shirts generally lay on my body they probably don’t rub much on my back. i don’t know if that has anything to do with it. the first time i pulled back my fingers and found my back hairs on them i thought that maybe i had just loosened a few of the hairs that were not in the growing stage or something. but every time i reached back and pulled at the hairs a little bit, i would get more in my fingers. of course there is still plenty of hair there and i can feel it as usual but way more of it came off on my fingers than you would expect in normal circumstances. there isn’t really anywhere else i can test it on my body. the longer hairs on my upper arms (closer to the bottom part) are firmly rooted as are my lower arm hairs. the hairs on the top part of my upper arm are too short to get a hold on in order to tug them. everywhere else, pretty much, i shave. i just started shaving in between my breasts and a little bit on my breasts (because of lower cut shirts for the warm weather) and i am kind of wishing i had put that off a few days so i could see if it was happening there too. it’s certainly making me feel better even if it’s just a fluke coincidence. i guess i just want to feel like the spiro is having some kind of effect on my body, however small. a new small pimple popped up on my chin earlier which made me feel like the spiro wasn’t even going to help with that either (i don’t have acne, i just get a couple pimples here and there, but it’s frustrating to still get pimples at 23 when everyone else i see has perfectly clear skin.)
edit: ok, so i tried it on some shorter hairs that grow on/under my breasts, they are too short to grab but i kind of rubbed them and lo and behold, many hairs fell off and i could see them against the black of my bra where there had been none before. sorry for the detailed play by play but i am pretty excited about this. i don’t know if it is the spiro or just some kind of natural phenomenon and they will just grow right back… but it’s really a nice feeling to be able to just tug at unwanted hair and see some of it come off in your hands…
Chuckle.
It sounds like the spiro is kicking in for you. I couldn’t help but picture a young lady pulling and picking at her body hair in excitement.
As far as the sun (and anything else), what you do and don’t do, or will and won’t do, is up to you. I will give you any information that I know, and you take it and do what you want with it.
I don’t wear big hats either, unless the sun is just fiercely glarey. The avobenzone sunscreen should be enough. Just be sure to apply it often if you sweat or swim. Works for me. As for the face… I have a few small “liver” spots on my face because I didn’t know about photosensitivity. Thankfully I caught it soon enough before I got spotted like a cheetah. They are easily covered with makeup (which, mine now has sunscreen in it) but I can imagine what would have happened to me if I never used the sunscreen. As for the previous poster, maybe what happened was that when she shaved, the hairs that would have deflected the sun were gone, hence the discoloration in those areas. Just an educated guess. My spots had nothing to do with shaving.
Pimples–spiro helps acne a whole lot if you have it, BUT it will not prevent an occasional pimple. Those just happen at times–usually hormonal, cyclical, or just lack of proper facial cleansing (nothing harsh, please!) Too much sun doesn’t do it any favors either.
Well, as for the hairs… you could wax them and see if they grow back. I doubt they would become terminal since they aren’t on your face, and they’re falling out on their own anyway.
Cricket23–the only thing I know that will fade darkened spots on skin–like melasma or age spots–is hydroquinone, especially the 4%. BUT you only should use it on small parts of your skin (as in, don’t rub it all over yourself!). It really works well, but know that you will be even MORE photosensitive. Let’s say you use that stuff for 3 months and your spots fade. If you go out in the sun for 30 minutes unprotected, you can get those darkened areas right back, as if they never faded at all. It takes a long time to fade them, and a short time to get them back. It happens with black people and white people both.
The 2% hydroquinone is considered safer than the 4%, but works a lot more slowly. 4% needs a prescript (in this country and most others), 2% does not. Nobody I know has been harmed by either, so I don’t know if the warnings are based on rats or people… or perhaps people who have misused it.
EDIT: Just curious–what does the little yellow flame mean before some threads? There is one next to this thread in the main Prescription forum.
ok, today i purchased some spf 15 facial moisturizer (i will just replace my normal everyday facial moisturizer with this. it says it should last all day unless you sweat a lot or go swimming.) that was the highest spf available for the product. i also purchased some spf 30 lotion for the body which i will apply in the mornings and then during the day if i need to. do you think this is enough? i really don’t want discolored skin!
also, i assume tanning beds are out too? i have never used one, i usually just get a natural tan in the summer… i don’t want to be a pale ghost creature this summer so i am exploring my options. i guess i may have to use a self tanning cream, it seems cheesy and cheap but i guess no one will be able to tell if i get a good, subtle one and apply it right…