how much hair loss?

ornurse · 10-02-2006, 04:14 AM

I am a thin PCOSer, not insulin resistant, on met. I was wonder what is a normal amount of hair loss in one day. Lately when I'm washing my hair in the shower many strands of hair have been coming out. I counted once morning and it was about 46, just when i showered. I don't know if this is normal for me or not because I don't really pay attention, but it just caught my eye they other day. I have also been finding a lot of hair stuck to my shirt throughout the day.

ann_2006 · 10-02-2006, 08:12 AM

Hi, i too am a thin cyster, not IR and taking met. Since the past couple of weeks i am also having a lot of hair loss, so much that its not normal. Many people on met have complained of hair loss so maybe its becuase of the met. But i am also TTC so cant stop the met. I started taking biotin but am not very regular with it. I have never counted my hair loss, but the day i shower if i count it i am sure it will be well above 50. I already have very thin hair and am really scared of all this hair loss.

libchick · 10-02-2006, 08:24 AM

I've just read on the internet that it is normal to lose about 100 - 300 hairs a day (although it sounds a bit much to me!) Here is the link: http://ezinearticles.com/?What-Is-No...-Loss?&id=4071

I was dx with hairloss in Feb this year and I had MUCH more than either 46 or 50 each day. I lost so many I used to clogg the drain! I'd say that if you are really worried to go see your GP or a derm. I waited much too long in seeing someone, and although my hair is growing back it is much finer than it used to be. (I was wrongly dx'ed with Androgenic alopecia, turned out my Iron was too low and my free testosterone was too high)

Please don't be too scared to see a doc about the hair loss. Worst case scenario they find out something IS wrong and fix it ~ best case scenario nothings wrong and you feel much better!!

zorah · 10-02-2006, 08:44 PM

Quote:

Originally Posted by libchick

I waited much too long in seeing someone, and although my hair is growing back it is much finer than it used to be. (I was wrongly dx'ed with Androgenic alopecia, turned out my Iron was too low and my free testosterone was too high)

I'm confused. If your high free testosterone was causing hair loss, isn't that exactly what androgenic alopecia is?

Did you have hair loss at your temples, or just thinning all over? I'm curious because I suspect low iron may be exacerbating my hair loss (I should get my test results on Wednesday), but my hair loss seems to be mainly due to excess androgens, since I have miniaturization and a rapidly receding hairline (as well as thinning all over). And so I'm wondering if there's any chance raising my ferritin levels (if they're indeed low) could cause any regrowth at my temples. I would expect not, but I'd certainly love to hear a success story!

libchick · 10-03-2006, 07:31 AM

Quote:

Originally Posted by zorah

I'm confused. If your high free testosterone was causing hair loss, isn't that exactly what androgenic alopecia is?

Zorah you are quite right, Androgenic Alopecia is male pattern baldness which is caused by too much free testosterone. However, both my derm and gyn agreed that while I had too much free test, I did NOT have AA. AA is usually very difficult to reverse and since I've been on the anti-androgen and taking the Iron supps, my hair has grown back.

I have to admit I'm still vv confused over the whole alopecia thing. But as my docs are happy and my hair is growing back, I guess being confused isn't too bad.

Quote:

Did you have hair loss at your temples, or just thinning all over?

I had general thinning all over the top of my head, but especially at the crown, where my bangs start. I didn't really have thinning at the temples, and the only place my hair is still as full as it used to be is at the very back of my head.

Quote:

I'm curious because I suspect low iron may be exacerbating my hair loss (I should get my test results on Wednesday), but my hair loss seems to be mainly due to excess androgens, since I have miniaturization and a rapidly receding hairline (as well as thinning all over).

If you suspect exess androgens, talk to your doc/derm/gyn about prescribing an anti-androgen (like Spiro or Androcur) as it helped me enormously! But the low iron also complicated the hairloss - my iron in my blood was normal, but my iron stores were almost completely depleted! I've been on the supps since Feb.

I'd say don't be scared/shy/ashamed to talk to a derm or a gp or a doc about the hairloss. But be warned - the first derm told me I had AA, she could not treat it and I would be losing all my hair.

And she didn't even have a good look at my hairloss, just glanced and dx'ed me. I was so upset I cried all the way home.

The 2nd derm I went to did a much more intense exam, looking at the hair that were falling out, trying to pluck a hair out and looking at it. Asking me q's about my general health, family history etc. Explained to me how your hair's natural growth cycle works and how something that happened a year ago could cause your hair to go haywire now. He also explained all 3 (or 4?) alopecias to me and then why I did not fit into any of them.

Having a doc that takes female hairloss seriously and treats you with respect will also help you feel more confident about being

Quote:

a success story!

Good luck and pm me anytime!

ScaredSally · 10-03-2006, 12:45 PM

Hi there ... as a female (thin cyster) losing hair also to PCOS diagnosed androgen genetic alopecia I can only say what I have learnt ...

If you have this type of alopecia its not just the androgens that cause it but also if your body is programmed to do it ..... some PCOS'ers have no hair loss but a LOT of body hair .. I have some body hair but severe hair loss ...

I have hair loss at the temples plus diffuse shedding throughout my temporal hair loss was what I first noticed

and I too waited FAR too long if you catch it early your far more likely to get a good result

Ameliab2006 · 10-03-2006, 03:30 PM

Quote:

Originally Posted by libchick

Zorah you are quite right, Androgenic Alopecia is male pattern baldness which is caused by too much free testosterone. However, both my derm and gyn agreed that while I had too much free test, I did NOT have AA. AA is usually very difficult to reverse and since I've been on the anti-androgen and taking the Iron supps, my hair has grown back.

I have to admit I'm still vv confused over the whole alopecia thing. But as my docs are happy and my hair is growing back, I guess being confused isn't too bad.

LIBCHICK!!!!!!!!! You have come to my rescue in this moment of great need!!!!! This has been my question all of my miserable life ever since starting this friggin' ordeal, but I just couldn't word it properly!!! I'm so new at this. My dread has always been to be diagnosed with AA, but something in me kept telling me that I couldn't possibly have this! I've had all the other symptoms before, but never hair loss! I thought that once you've been diagnosed with PCOS you DEFINITELY had to have AA.

So what you are saying is that it is possible to have just an excess of free testosterone which translates into symptoms very similar to AA, but it is NOT AA? I would think that AA is a CHRONIC condition. One that you are predisposed to because of PCOS and it is something you've had all along and it is difficult to reverse. My endo is currently evaluating me, but she told me just after a second visit that it is probably due to my PCOS. I told her about a recent event that I had when I wasn't eating anything at all and my stress was at an all time high. I had never experienced anything so straining and then suddenly I had hair loss. She still thought it was PCOS until she sent for some cortisol testing using dexamethasone as a suppressant and discovered that my cortisol is 4x's the normal amount. I have not seen her again since those results so I have not laid the confirmation on what exactly does she think of me now. Because if I did have AA that would mean I have miniturization and I really really friggin' dread that to the death! I don't even know if my hair is regrowing as I shed it! All I know is that before I sought medical attention just recently I have had the same length of hair since my last haircut over a year ago and my hair is getting flatter and flatter, I suppose the next step is balding areas.

So far in testing, she has told me I have very high testosterone, no auto-immune disorders, cortisol is elevated and I have no anemia. I have had three cortisol testing done. Two of them were blood draws where I had to take dexamethasone tablets. The first time I did this it was low dose .5mgs and then have a blood draw the next day. When the results were in, I told her about how I noticed a little more hair shedding than my usual shed. I thought it was me and she said it couldn't have happened so I let it go. This time, she wanted to confirm my cortisol DHEAS test with a higher dose of dexamethasone: 2mgs/4x's a day for 2 consecutive days and have a blood draw on the third day. Well, two days after I stopped taking the medication I broke out mad!! My skin is irritated in an acne like rash and I have no idea how this has affected my scalp, but I am afraid to know! Is anyone familiar with this type of effect with dexamethasone? Is this supposed to happen? Why does my endo insist that it can't happen?

Please, I'm desperate!

libchick · 10-04-2006, 07:11 AM

Hi Amelia!

Glad I could be of help!

Quote:

So what you are saying is that it is possible to have just an excess of free testosterone which translates into symptoms very similar to AA, but it is NOT AA

Yup that's what my derm + gyn said. My gyn said my hair loss in Feb this year was also bec my free testosterone was 4 times the normal levels for about 2-3 years, it's been normal this year and the hair loss is back to normal. Remember also that not all hair loss is androgenic alopecia, there are more than 4 different types (check this link) so perhaps yours is a different kind?

But what I can confirm is that my 2nd derm asked me whether or not any of my female relatives had AA, or bad acne or excess facial hair. (So whether or not I was genetically predisposed to it) The answer to them all is no. So that was the first indication that he was v sceptic that I had AA.

Quote:

Female androgenetic alopecia often appears in women with a strong family history of baldness or a personal history of hirsutism, acne, or abnormal menses (signs of androgen excess). Genetically predisposed women may present with androgenetic alopecia in adolescence (puberty), perimenopause, or postmenopause.

Here's the link

I doubt very much whether pcos = AA or AA = pcos. (But please remember i'm def no expert) Because not all of the cyster have AA, and not all AAs have pcos.

I did a google search for "dexamethasone and side effects" and found that they say that puffiness in the face, increased appetitie, weight gain, ACNE, rash, depression are all side effects of the meds. Here's the link. So it could be that the acne/rash could be a side effect of the drug. In that case if they change the dosage or the drug it might disappear(?).

You say that you stopped taking the meds - did you stop cold turkey or did you go off gradually? I'm asking bec in the above mentioned link, they say that you should not stop cold turkey bec your body cannot make enough cortisol on such short notice. So it could also be your body's reaction, maybe?

I also did a search for "cortisol + hair loss" and here is what I found:

STRESS AND CORTISOL EXCESS

Quote:

Stress has been associated with hair loss for many years. During times of extreme stress, the body loses large amounts of vitamins, minerals and protein ( in the form of nitrogen) in the urine. This sudden loss of nutrients has been thought as a factor in hair loss. The stress may be caused by illnesses such as scarlet fever, it may follow pregnancy or other illnesses.

During times of stress cortisol levels also increase. Cortisol is a hormone produce by the adrenal glands. It has many important functions. However, in excess, I believe that it can trigger hair loss as well as bone loss. If cortisol is found elevated by saliva testing, a protocol does exist that will normalize it. So far, this program has been 100% successful.

Link

You said that prior to the hair loss you had an event that was more straining than anything that had happened before and that you were not eating well. Perhaps that's the reason for the hairloss now. Remember that your hair grows in cycles and that what happend 6 months ago, could impact your hair growth cycle then, but you only see the impact now. (hope that makes sense)

I hope this helps but I'm sure some of the cysters here will also be of much help.

ScaredSally · 10-04-2006, 11:42 AM

I am confused as to what AA is ... I have been diagnosed with AGA which my endo and derm both confirmed WAS from PCOS ..... AGA (androgen genetic alopecia) is the only alopecia caused by PCOS due to the elevated androgens etc hence its also known as male pattern baldness (temporal loss, and diffuse shedding) or female pattern loss (diffuse shedding and thinning over the head without losing the hairline) ....

any other type of hair loss is NOT a result of PCOS at all ..... AA is what i know as Alopecia Aerata which is an autoimmune condition there is also Alopecia Totalis Alopecia U(cant spell the rest) (also an automimune condtion), TE (diffuse shedding but apprently does stop although mine never has), Traction Alopecia (casued by repeated pulling on the follicles causing baldness) ...AGA does not have to be genetic (none of my relatives have this and two friends I know with PCOS also have thinning hair with no record in their familu) you really need to have a scalp biobsy to determine what type of alopecia there is ... and no need to be harsh here but really there are treatments but no solid cure .. beleive me I have tried every single one of them to no avail.

For more and very good info on hair loss I would recommend a site I have been a member on for over three years ... www.herhairlossforum.com or www.heralopecia.com although the admin on there is a little pervy man try to avoid talking to him .. he has booted off many women who voice an opinion and he likes to read the posts ... so dont get too personal

I hate to hear of more women going through this icky and crazy thing .. but there is hope for those who do lose a lot of hair .. I can advise on very good cosmetics which have certainly imprived the quality of my life and many others

Ameliab2006 · 10-04-2006, 09:49 PM

Quote:

Originally Posted by libchick

Hi Amelia!

You say that you stopped taking the meds - did you stop cold turkey or did you go off gradually? I'm asking bec in the above mentioned link, they say that you should not stop cold turkey bec your body cannot make enough cortisol on such short notice. So it could also be your body's reaction, maybe?

No, the dexamethasone was just for a cortisol suppression test. A test which I've had to do 3x's over in a matter of 4 weeks because my doctor wouldn't believe my levels. Usually my acne and hair loss would be at a constant, but each time I took the medication to have the testing done the hair loss would increase and the acne got worse. This is a strange answer by my doctor. She insists that this couldn't happen. Correct me if I'm wrong, but isn't dexamethasone giving me EXTRA cortisol to see how my body reacts to it? I don't know what the hell I was given, but I've also read that the dexa is used to treat hair loss itself....huh? I'm lost.

Quote:

Originally Posted by libchick

You said that prior to the hair loss you had an event that was more straining than anything that had happened before and that you were not eating well. Perhaps that's the reason for the hairloss now. Remember that your hair grows in cycles and that what happend 6 months ago, could impact your hair growth cycle then, but you only see the impact now. (hope that makes sense)

I hope this helps but I'm sure some of the cysters here will also be of much help.

I pray and pray you are right and this is just TE. But I guess in the end it doesn't matter what version of hair loss I have. Even TE can be potentially devastating if it doesn't stop. I have absolultely no balding as of yet because I am just beginning to go through this shed process. I've heard of people shedding years on years with AGA. My shed only started about 8 months ago and it has been progressing since then, but so has the stressor. That hasn't stopped. It is school, and unfortunately that's something I can't change. I am also very depressed and tired all the time. I am even bobbing quick winks as I am typing this. It is chronic. My eyelids feel like they put on 20lbs. And I am afraid that if this continues, I will either lose all my hair or worse yet, develop some auto-immune disorder that will make it 20'xs difficult to control.

My doctor hasn't told me this because she can't diagnose me until my last cortisol test is in, but in the end the cortisol is the problem and the likelihood is that I have excess androgens surging from this cortisol, that plus the fact that I do know that my T is high. I am just afraid of not being able to control this, being a non-responder or just simply getting better, going off the med and then have the whole thing start up again. That would make me dependent on medication. I don't want to be a walking ambulance.

One question I forgot to ask you was, how long did it take you to start seeing improvement and did you go through that initial "dread shed" I hear so often about...

Thanks for the help.

**I just read ScaredSally's post. I'm curious to know, if alopecia that is caused by AGA and by all ends it is androgenic; what would some of the reasons be that a single androgen blocker does not work with everyone? Why are there non-responders?

Does it have to do with age, other underlying medical disorders? What is it?

violamarie · 10-05-2006, 04:54 PM

How much iron is needed? I don't know if my stores are low or not, but I have been extremely fatigued lately (since starting Met). I wonder if I need more iron? I do take a multi; is that enough?

zorah · 10-05-2006, 09:24 PM

Quote:

Originally Posted by violamarie

How much iron is needed? I don't know if my stores are low or not, but I have been extremely fatigued lately (since starting Met). I wonder if I need more iron? I do take a multi; is that enough?

The only way to know is to get your serum ferritin tested. You definitely don't want to take lots of iron without knowing for sure that your iron stores are low, since the body has no way of getting rid of iron it doesn't need, and excess iron stores are very dangerous for your heart. But of course you need supplemental iron if your stores are too low, so your ferritin level is a really good thing to find out.

HTH!

zorah · 10-05-2006, 10:03 PM

Quote:

Originally Posted by libchick

Zorah you are quite right, Androgenic Alopecia is male pattern baldness which is caused by too much free testosterone. However, both my derm and gyn agreed that while I had too much free test, I did NOT have AA. AA is usually very difficult to reverse and since I've been on the anti-androgen and taking the Iron supps, my hair has grown back.

I have to admit I'm still vv confused over the whole alopecia thing. But as my docs are happy and my hair is growing back, I guess being confused isn't too bad.

It sounds like there's just a difference of opinion over terminology. I believe all hair loss from high androgens (or high sensitivity to normal levels of androgens) is generally considered to be androgenetic alopecia, but it sounds like your doctors have a narrower definition. Of course, it doesn't make any difference what you call it!

I think a fair number of women with androgenetic alopecia do get some regrowth or at least stop shedding with antiandrogen therapy, although of course there are many who continue to lose hair.

It's fabulous that your hair is growing back! What kind of iron supplements do you take? (Like, 325mg ferrous sulfate? Or a different form or amount?) And what was your ferritin level? I finally got my test results, and my ferritin is 17 ng/mL. Although that's a normal level, I'm still suspicious that low iron may be contributing to my hair loss. I'm not aware of any really convincing evidence of a connection between low ferritin and hair loss in people without true iron deficiency, but a few dermatologists seem to find a connection in their clinical practices: http://www.webmd.com/content/article/122/114601.htm (or http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum)

There are also a couple of studies that are interesting, although far from convincing due to their tiny sample sizes (and the fact that there are conflicting studies):
http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum
(which finds antiandrogen therapy results in increased hair density in women with ferritin levels above 40, but not below 40), and
http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum
(which finds lower ferritin levels among women with all kinds of alopecia than among controls)

I don't know where the author gets this, but one site (http://www.hairsite2.com/library/article194.htm) even claims, "Hair follicles are known to contain ferritin, and when the circulating stores of ferritin decline then these stores are called upon to ensure support for more essential cells, such as bone marrow. The loss of this ferritin from the follicle cells can effect the ability of the hair to grow. This leads to the development of vellus (non pigmented fine hairs) which can be an early indication of deficiency. The presence of vellus hairs is easily mistaken for minaturized hair seen in androgenic alopecia. We should note here that Iron deficiency hair loss could therefore mimic the pattern of androgenic alopecia hair loss."

I'm not convinced that ferritin levels much above 50 ng/mL are really safe for the heart (although 150 ng/mL is the top of the "normal" range -- but heart attacks are normal too!), but I think that, under my doctor's supervision, I'm going to try to raise my ferritin to 50 just in case it helps my hair loss, either by itself or by allowing the antiandrogen to work.

libchick · 10-06-2006, 06:48 AM

zorah - I'm not sure about the dosage I take (I just take a supp from the pharmacy) but I will def have a look at the dosage this evening.
Strangely enough, my ferritin levels have never been tested .... but thanks for the great links posted!