Carolina's Story - ( New to the Forum)

Carolina

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I am attempting to tie these symptoms together to first identify the cause of my hair loss. Once I identify the cause, I can better address the treatment.

I hope someone can provide information and guidance.

History:
I experienced age-related ovary failure (the M word) 12-years ago, at age 50 and following that slowly began losing body hair (now none on arms, underarms, and legs). I immediately began taking prescription compounded estrogen and progesterone and have continued this hormone replacement therapy for 12-years.

Slow hair loss at the scalp began at the same time. My hair was very thick so I did not see any particular pattern, that is, overall or only in front.

Treatments:
About 5-years ago, I began using Dercos by Vichy Labs, at that time a European prescription drug for "perifollicular fibrosis, a condition that causes collagen around the hair root to become rigid" causing hair to fall out prematurely. The active ingredient in Dercos is Aminexil. (Dercos is now available from a U.S. Distributor without a prescription.)

Dercos worked immediately and stopped hair loss. Over the last couple of years, Dercos has not worked as well.

I had my hair colored at salons and noticed about 3-years ago, the hair in front was not growing. Gray roots, indicating hair growing out, occurred everywhere but the front, around my face.

Possible Related Conditions:
1. After tracking my thyroid stimulating hormone (TSH) levels over an 8-year period of time, I noticed that TSH was increasing and finally I lost my lateral eyebrows. Suspecting subclinical hypothyroidism, I began taking 30 mg Armour Thyroid 4-years ago. (A brief trial of Synthroid increased hair loss.)

2. About 2-years ago, I began having intractable scalp pain when stressed. (I live with a lot of stress.) I diagnosed this condition as Scalp Dysesthesia; thought to be neurological. Only Scalpicin with 1% hydrocoritisone and, to a lesser degree, Capsaicin cream relives the pain.

Currently - last 6 months:
Hair loss (male pattern) is very obvious and has accelerated. I have to wear a scarf or head band to cover it. Also, in front, some hair is 10 inches long, some hair is a short as 1 inch long.

There is no hereditary hair loss in my family – all relatives have thick, abundant hair well into their 80s.

I have seen internists, dermatologists, and endocrinologists for hair loss and conclude that they don't know and don't care. All advised that hair loss was common and I just had to live with it. (None offered a diagnosis.)

Thank you for your thoughts and suggestions.
 

somone uk

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Re: Carolina New to Forum

hi, welcome to gourmetstylewellness.com, most the women here have moved to http://www.heralopecia.com, but you are more then welcome to post here

have you seen a trichologist?, whist not technically doctors they are hair and scalp specialists, hair conditions because they are not life threatening are not usually studied highly by doctors and usually a bit more sympathetic about hair loss, since it's their speciality

i can't imagine all your doctors missing hypothyroidism
nor iron defeciantcies etc

i looked up scalp Scalp Dysesthesia and found this article, i kinda suspect this is the condition causing your condition but i am no doctor http://dermatological-treatments.suite101.com/article.cfm/burning_scalp_syndrome
unfortunately it seems that little is known about your condition
seems to explain everything including your hair not growing because it mentions that it reverts your hair into telogen (resting) phase of hair growth
 

Carolina

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Re: Carolina New to Forum

Thank you for your kind note and the aritcle. I did have a phone consult with a trichologist last year. There are no trichologists in my State.

Also, regarding Scalp Dysesthesia, it is not what I would consider burning, but rather, scalp PAIN. The pain is so bad, I cannot function and require total bed rest. The pain resolves within a couple of days to three weeks.

Yes, doctors miss a lot these days. That is one reason I keep copies of all medical records and labs to review.

Hair loss preceded Scalp Dysesthesia by 7 years. What are your thoughts on losing body hair at the same time? Connection?

Thanks, again.
 

somone uk

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Re: Carolina New to Forum

Carolina said:
Thank you for your kind note and the aritcle. I did have a phone consult with a trichologist last year. There are no trichologists in my State.

Also, regarding Scalp Dysesthesia, it is not what I would consider burning, but rather, scalp PAIN. The pain is so bad, I cannot function and require total bed rest. The pain resolves within a couple of days to three weeks.

Yes, doctors miss a lot these days. That is one reason I keep copies of all medical records and labs to review.

Hair loss preceded Scalp Dysesthesia by 7 years. What are your thoughts on losing body hair at the same time? Connection?

Thanks, again.
it makes a massive difference that you're losing hair from the rest of your body, firstly it rules out hormonal causes and it means it can't be hypothyroidism

going to a doctor and saying you're losing hair on the rest of your body will narrow things down quite a lot
if you have your medical records with you, you can look for an iron deficiency by looking for a "ferritin" level and the level should be 75 or above

how would you desribe your hair loss, did your hair fall out quick or did it slowly progress?
is it thinning all over or falling out in specific patches?
 

Carolina

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Re: Carolina New to Forum

it makes a massive difference that you're losing hair from the rest of your body...

how would you desribe your hair loss, did your hair fall out quick or did it slowly progress? is it thinning all over or falling out in specific patches?

Thank you so much for your help with this.

In response to your question: both quick and slow. In 1999, I had a big shed (hair all over the floor). Treatment with Dercos over next 9 years stopped the shedding and slowed the diffuse hair loss. Since April 2009, frontal hair loss is huge. Here is a more detailed time line:

1999: Menopause.

1999 - present: Immediate HRT with prescription, compounded, bioidentical Estrone, Estradiol, Estriol, and Progesterone.

1999 - 2001: Diffuse hair loss (saw a lot of hair on the floor) and greater loss in 1 small area to left of crown (much like the photos of early hair loss at the mid-line part). Noticed each hair had smaller diameter. Since my hair was very thick, doctors did not believe I had a hair loss problem.

1999 - present: Lost all arm, underarm, leg hair.

2001: Began Dercos treatment.

2001 - 2008: Continued Dercos treatment. Little noticeable hair loss.

2004 - present: No new hair growth at frontal hairline.

2005: Mild iron deficiency. Treated with prescription ferritin supplement until within the normal range.

2008 – present: Dercos not working.

April 2009 - present: Accelerated hair loss at frontal scalp area. Hairs range from 10 inches long to 1 inch long. Hairline receding. Must wear scarf or wide headband to cover area.

2001 - present: Total loss of hair volume is 50%.

I agree with you that hair loss on my body is relevant and always mention it to my doctors; my Internist, and the dermatologists and endocrinologists I have seen. They never pay any attention. My concerns are always met with total apathy, as in "why are you bothering me with this hair loss trivia?"
 

somone uk

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Re: Carolina's story - (New to forum)

hmm you have experienced unusual and strange hair loss, your bodily hair loss seems more extreme than your head hairloss
i am no doctor but i suspect it could be diabetes or autoimmune related
on the other hand prescription meds would fit quite well as well
regardless of cause minoxidil usually give some results, the responce usually depends on the cause
 
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