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Old 04-22-2008, 01:34 PM   #1 (permalink)
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Default Does my endo know what she is doing??

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 and research, 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?????
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Old 04-22-2008, 01:53 PM   #2 (permalink)
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Also, I requested a copy of my blood test results because I didn't really trust the doctor to just explain them to me. When I first met with her she had explained to me the various things that could be causing my symptoms, such as thyroid problems or insulin resistance, so I assumed she would check for those things. But apparently she didn't! I don't see anything on my chart about insulin. I'm not sure what things you measure to check for thyroid disease. These are my results:

BLOOD COUNT
Wbc: 5.2
Rbc: 4.60
Hemoglobin: 14.4
Hematocrit: 42.6
Mcv: 92.7
Mch: 31.4
Mchc: 33.8
Rdw: 12.5
Platelet: 197

ENDOCRINES
Fsh: 1.6 (with a little superscript T next to it)
Lh: 3.1 (with the T)
Tsh: 0.85
Dhea-s: 263 (with the T)
Testosterone: 42 (with the T)

So it looks as if she ordered no measurements for insulin, free testosterone, prolactin, or anything else that could help with my treatment. I am very frustrated. Can anyone help me understand exactly what these results mean? At the time I was tested, I was taking Ortho Tri-Cyclen, which my doctor and the people who drew my blood were aware of, so I am sure this affects the results. I know that DHEA and free testosterone are the main culprits in hirsutism, but I don't know enough to really understand these results.
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Old 04-22-2008, 01:53 PM   #3 (permalink)
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I'm not sure what the answer is, but it sounds like your doctor is looking for 'androgenic' hair, and she suspects that what you have is 'not' androgenic.

http://en.wikipedia.org/wiki/Androgenic_hair

You might want to call and ask for more clarification.
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Old 04-22-2008, 02:03 PM   #4 (permalink)
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Also, not all 'excessive hair growth' is hirsutism:

Quote:
Two types of excessive hair disorders exist and must be distinguished.

Hypertrichosis is non–androgen-related pattern of excessive hair growth that may involve vellus, terminal, or lanugo type hair. Hypertrichosis can accompany certain genetic syndromes, or it can be induced secondarily by exogenous medications, most notably phenytoin, minoxidil, cyclosporine, diazoxide, corticosteroids, phenytoin (Dilantin), streptomycin, hexachlorobenzene, penicillamine, heavy metals, sodium tetradecyl sulfate, acetazolamide, and interferon.

Hirsutism commonly occurs in women and presents as androgen-induced male-pattern hair growth of the terminal type. Hirsutism may have a congenital or exogenous origin. More common causes of hirsutism include polycystic ovary syndrome (PCOS), idiopathic hirsutism, hyperprolactinemia, hyperthecosis, and medications (eg, danazol, androgenic oral contraceptives). Less common causes of hirsutism include congenital adrenal hyperplasia, ovarian tumors, Sertoli-Leydig cell tumors, granulosa–thecal cell tumors, other tumors that stimulate the ovarian stroma, adrenal tumors, Cushing disease, tumors of the adrenal cortex, and severe insulin-resistance syndromes.

Source: http://www.emedicine.com/derm/topic811.htm
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Old 04-22-2008, 04:26 PM   #5 (permalink)
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Hi Kat, thanks for the quick reply. For some reason my doctor never has used terms such as vellous, terminal, androgenic, etc., although I have already educated myself on what they meant before I even saw her for the first time. So I am not sure if she is considering the hair to be terminal or not. But from my point of view-- this is hair I did NOT use to have, even 6 months ago, and I am long past puberty (I am nearly 23). It is also longer, darker, and thicker than any normal vellous type hair that I may have, and I have watched it steadily appear and transform. Maybe it is possible this is hypertrichosis-- I can only find very conflicting info on that condition and don't know what could be causing it if that's what I have. But the areas I grow hair in are androgen-sensistive areas, just as you would expect with PCOS. I think my doctor may not understand the extent of the problem. But, she did see the hair on my back, shoulders and upper arms, and I explained to her that it was bleached, but she felt that because it was "fine" the spiro would do nothing for it-- not even stop the spread of new hairs!

Another thing I forgot to mention 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!! Anyone who is at all educated about hair growth should know that shaving DOES NOT change the hair in any way and DOES NOT stimulate more growth! It only appears to make the hair thicker because it is cut off at the thickest point, and grows straight out of the skin when growing back. There is also no way that I know of that it could stimulate more growth... so what is that supposed to mean I wonder?!

I really did try to get her to clarify as much as I could, but she kept saying the same things over and over, and how I had "stumped" her and she "just didn't know." I started crying a bit and I couldn't really think right to ask any more questions, but I think I would have gotten more of the same. Do you think I should try to find another endocrinologist? I'm not sure I will find anyone else because this is the best center I could be going to, but my doctor just doesn't seem to have the same information as all the studies, medical info and personal reports that I have read...
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Old 04-22-2008, 06:06 PM   #6 (permalink)
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Originally Posted by sparkbark View Post
my doctor just doesn't seem to have the same information as all the studies, medical info and personal reports that I have read...
It may be that your doctor hasn't much of a clue in some areas -- but a replacement may be little better.

You've obviously thought things through very carefully and done your research regarding your increasing facial hair growth. You say your doctor is female -- she may never had developed any coarse hair on her own body and may have had no brothers, so may never have seen how the normal pattern for testosterone-influenced hair change is for fine hair to get longer, more pigmented and coarser over a period of years. That's what's happening to you and it's gone quite some way in just a few months.

She may know a reasonable amount about the endocrine side of things but little about the hair and may be regarding it as a cosmetic matter of no great significance.

The sort of benchmarks that most of the medical textbooks use for hair growth is based on the time for regrowth of facial hair after it's been shaved:

* shaving facial hair once per month is regarded as normal for a Caucasian female aged 15-45

* shaving once a week is regarded as heavy growth

* shaving once a day is regarded as normal for a male and unusual for a female.

If you don't have to shave facial hair more than three times a week, they're not likely to take much notice of the hair problem. If you do have to shave facial hair four or more times a week, then probably another doctor might pay a little more attention to it.
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Old 04-22-2008, 06:12 PM   #7 (permalink)
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Do you think I should try to find another endocrinologist?
Yes. One that communicates better.

Check PubMed. run a search on PCOS and the city you're in. that might help give you some leads on any researchers/endos in your area.

Or download the doctor directory listed in the RESEARCH FORUM.
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Old 04-23-2008, 09:43 AM   #8 (permalink)
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Quote:
Originally Posted by joyblack View Post
It may be that your doctor hasn't much of a clue in some areas -- but a replacement may be little better.

You've obviously thought things through very carefully and done your research regarding your increasing facial hair growth. You say your doctor is female -- she may never had developed any coarse hair on her own body and may have had no brothers, so may never have seen how the normal pattern for testosterone-influenced hair change is for fine hair to get longer, more pigmented and coarser over a period of years. That's what's happening to you and it's gone quite some way in just a few months.

She may know a reasonable amount about the endocrine side of things but little about the hair and may be regarding it as a cosmetic matter of no great significance.

The sort of benchmarks that most of the medical textbooks use for hair growth is based on the time for regrowth of facial hair after it's been shaved:

* shaving facial hair once per month is regarded as normal for a Caucasian female aged 15-45

* shaving once a week is regarded as heavy growth

* shaving once a day is regarded as normal for a male and unusual for a female.

If you don't have to shave facial hair more than three times a week, they're not likely to take much notice of the hair problem. If you do have to shave facial hair four or more times a week, then probably another doctor might pay a little more attention to it.
It is actually body hair and not facial hair that my main problem is with. I have to shave my stomach, legs, fingers, and underarms every day, and all other areas can go 2 or 3 days, but that's cutting it pretty close. I just find it hard to believe that this hair isn't caused by PCOS and can't be affected at all by the drug even though it is a symptom... and I find it hard to believe that the simple texture of the hair means it isn't androgen related... the hair on my "treasure trail" was once fine and now it is coarse. Isn't that just the progression of hair? And the fine hair that she says can't be treated is just an early stage of coarse hair? If that's the case why would the spiro not affect it? I feel so hopeless. I don't want to be a hairy freak forever. Why would it not even stop the spread of hair? I am still seeing new hairs come up...
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Old 04-25-2008, 07:03 PM   #9 (permalink)
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Sounds like you have many questions that have gone unanswered! I think, if I were in your shoes, I would find an endo that would do a better job of explaining things.
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Old 04-26-2008, 08:59 AM   #10 (permalink)
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hey, i just wanted to make a comment, and didn't want to make a whole new thread, so i thought i would put it in here. something interesting is happening. i don't know if it is a normal occurance or if it is related to the spiro but either way i'm glad it's happening. it seems that if i pull very lightly or rub vigorously across the hairs on my back and chest, they just kind of come out... i noticed this by accident when scratching my back... it's a very light force, nothing like tweezing. the rubbing works for shorter hairs that i can't grasp. of course there is still plenty of hair there but WAY more than i would expect to be normal will come off in my hands. i think this must mean the hair is becoming very weak? i wonder if that is because of the spiro? at first i thought it was just coincidence and maybe all body hair does that if you happen to grab some hairs that are not in the growing stage. but i tried this all over some "normal" hair (lower arm) and that is all very firmly rooted, not even hard tugging could get it out. so i wonder what is happening? it seems unlikely that spiro would have this kind of effect this early. but still... it's nice to see some of the hair you hate just kind of fall away with your fingers!!!
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Old 04-26-2008, 09:05 AM   #11 (permalink)
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I just find it hard to believe that this hair isn't caused by PCOS and can't be affected at all by the drug even though it is a symptom...
In women with PCOS, the excess hair is never cased by 'PCOS'. It's caused by androgens, since many women with PCOS have excess androgens.

If that isn't what is driving your hair issues then anti-androgens like spiro or flutamide might not help.

There are MANY reasons that a woman could be experiencing excess body hair (some eating disorders cause excess body hair.)

You need to see a doctor who can look at all possibilities.
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Old 04-26-2008, 09:14 AM   #12 (permalink)
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sorry, i know what causes the excess hair, it's just easier to say "caused by pcos" than to say "caused by excess androgens which are a symptom of my pcos." but dont worry, i am educated on that part of it. i am going to start looking for a new doc now that my semester is over and i have free time. i don't have any eating disorders. i have read about the various conditions that cause excess body hair and it seems most likely it's because of the pcos, since my doctor says that i have it, and my sister has it also and had excess hair issues (of course i never examined her body hair but as i remember it was also pretty fine and simple BCPs helped her a lot.) anyway i will continue to take the spiro, hopefully it works, unless my new doctor tells me to stop taking it. i also wrote a post above about an interesting thing that is happening to my hair. i would love it if this is because of the spiro but i'm not going to jump to conclusions and get my hopes up since i have only been on the stuff for about 5/6 weeks.

something else i thought you might know, which i read on another board. apparently it's very important to wear sunscreen while on spiro or it can discolor your skin? i wish my doctor had told me this!! i love the sun and i would have gone out in it unprotected and not ever realized the spiro was causing it if i got discoloration. i am sad that i cant tan at all this summer but im willing to pay that price to get the hair under control. so sunscreen here i come...
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Old 05-09-2008, 04:59 PM   #13 (permalink)
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I see your last post to this thread was a couple of weeks ago, so not sure how things are going, but still wanted to share this...

When I went on spiro (100 mg), once it started working, it worked on virtually ALL my excess hair. The weirdest thing, and what I never expected - it slowed the growth of my armpit hair!! The hair there had always been about the same, as long as I can remember.

Also, hair on my chest area and right above my waist had started to darken in recent years (I'll be 37 next month), but was still very fine. That may have been the first hair affected by the spiro. I would depilatory it every so often (like, a few months) but then eventually I didn't even have to do that. It just didn't grow back in like that anymore.

The hair on my lower cheek/jaw/sideburns started growing in more slowly and lighter - some completely blond/almost white. It also slowed the growth of my upper lip hair, which I have had since I was 13 - and it was always fairly fine (in contrast, I have hairs at the edge of my upper lip/corners of my mouth, and THOSE are coarser than the rest of my upper lip hair).

I think the only part that I didn't notice a big difference was my chin/under chin area, and that is where my hair is the coarsest. However, it may have at least slowed it a bit, and maybe lightened it some.

So in my case, it actually worked on the finer hairs BETTER than the coarser hairs.
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Old 05-09-2008, 07:45 PM   #14 (permalink)
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I see your last post to this thread was a couple of weeks ago, so not sure how things are going, but still wanted to share this...

When I went on spiro (100 mg), once it started working, it worked on virtually ALL my excess hair. The weirdest thing, and what I never expected - it slowed the growth of my armpit hair!! The hair there had always been about the same, as long as I can remember.

Also, hair on my chest area and right above my waist had started to darken in recent years (I'll be 37 next month), but was still very fine. That may have been the first hair affected by the spiro. I would depilatory it every so often (like, a few months) but then eventually I didn't even have to do that. It just didn't grow back in like that anymore.

The hair on my lower cheek/jaw/sideburns started growing in more slowly and lighter - some completely blond/almost white. It also slowed the growth of my upper lip hair, which I have had since I was 13 - and it was always fairly fine (in contrast, I have hairs at the edge of my upper lip/corners of my mouth, and THOSE are coarser than the rest of my upper lip hair).

I think the only part that I didn't notice a big difference was my chin/under chin area, and that is where my hair is the coarsest. However, it may have at least slowed it a bit, and maybe lightened it some.

So in my case, it actually worked on the finer hairs BETTER than the coarser hairs.
That all makes perfect sense. The hairs that had responded least to testosterone were the easiest to reverse the higher growth rate of. The hairs that were longest and most firmly established in their male-pattern growth were least affected. So the areas you still have male-type growth in are the outer edges of your upper lip and your chin. These are very often the areas in which women who have no other male-type hair growth will develop male-type hair, especially the outer edges of the moustache. When my moustache first started growing I had coarse male-type hair at the outer edges of it long before I had anything growing right across from side to side. In fact, I was shaving every day for years before I had to shave a complete moustache from side to side.
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Old 05-10-2008, 06:13 AM   #15 (permalink)
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