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RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/12/2007 11:08 AM (GMT -6)   
My hair has been falling out, for years.. lots of it, but just recently my eyebrows and eyelashes have been falling out, quite a bit of them.. I was just wondering if I'm the only one... or has someone else had this happen?
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/12/2007 8:27 PM (GMT -6)   
Hi Rebecca . . . Hashimoto's Thyroiditis will cause your eyebrows to fall out from the outside in. I'm sure that since you are losing lashes too, it could even be a nutritional deficiency. For sure . . . talk to your doctor about it. I see you have lots of dx and meds . . . sorry sis . . . that must be really hard to take. Some here have taken an inexpensive supplement called Biotin. It seems to help the hair grow.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

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UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 11/12/2007 8:56 PM (GMT -6)   
Hi Rebecca,
You may have an endocrine problem like Rosie said, hashimotos or a possible pituitary imbalance. Since prednisone and other steroids effect how our endocrine glands work, you can have problems on and between doses of them and you can develop problems. The bad thing about eyelashes and hair loss like you describe is that the follicle usually comes out so you can't grow the hair back, this is especially true of eyelashes. There is a hormone that controls hair growth and loss called FSH (follicle stimulating hormone) and when people are on interferon and other meds sometimes this hormone goes out of whack and you have hairloss and even balding. In my case, my hair came back, although I think it is thinner now. I have a polyendocrine deficiency so more than one endocrine gland is deficient in me leading to lots of different problems. I take synthroid for my thyroid and am being tested by an endocrinologist for other stuff. The condition I have can get serious but it takes a long long long long time to get to that point. I would definitely bring this up with your rheumie, pc doc or endocrinologist if you have one. your pc doc should be able to order blood work to check your FSH level and thyroid and will check probably some other stuff too. I wouldn't wait though, you don't want to end up with permanent eyelash loss. That can cause problems with your eyes.

I also have vitiligo, and in the areas where I have vitiligo, I have hair loss. Could you possibly have some vitiligo on your face where your eyes are? I have it on my face but you will never see it because I don't have total pigment loss and I'm pale enough that it doesn't show. It only shows up under a blacklight or Brooks light. I don't know if you are really pale, you will never see the pigment loss until your hair is effected and turns white or falls out. There are skin conditions like vitiligo that are treatable in some cases with straight head and shoulders, I had to do that when I got pregnant. I had tinea versicolor, a fungus or something I guess. I wouldn't want it near my eyes though. I also have eyelash loss from blepharitis or "crusts" around my eyes, probably part of my sjogrens syndrome. I guess what I'm getting at is theres a bunch of reasons for it and seeing a dermatologist if you have any skin problem can be a good thing, there are tx out there for lots of stuff if you catch it early.

Sorry this is so long, but as someone who has had and has some permanent hairloss and disfigurement, I want to spare anyone else not acting quickly on it because I did not and though they didn't have much to offer back then, I would be healthier today in some cases. I hope you figure it out.

Oh and what Rosie said about the vitamins...those skin, hair and nail vitamins do work well, especially if your hair is mostly just dry and breaking, but you need find out why its falling out. All the vitamins in the world can't make you make a new hair follicle once it is gone. Please let me know what you find out.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 11/12/2007 8:57 PM (GMT -6)   
I was going to suggest the same thing as Rosie did.  Thyroid issues will cause loss of eyebrow hair.  I understand how frustrating and scary it is to lose your hair.  I went through that this past summer.  It was awful.  I can relate, (((hugs))).
 
Let us know what you find out,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/13/2007 12:04 AM (GMT -6)   
Actually, I was told I needed to have my thyroid checked, but I haven't been able to, so maybe that is it.. and I do have very very pale skin... I'll for sure try the vitamins though. Thank you. In the mean time I guess I'll just try to pencil the eyebrows in, so it doesn't look as if I tried to fix them with a weed whacker, lol.
Thank you, very much. :)
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/13/2007 1:53 PM (GMT -6)   
If your inability to have the test done is a money thing most hospitals have a program where low income people can get reduced cost or free services like lab work. Also a university medical center will have an even more inclusive program where you can see any doctor, have any test, be hospitalize, etc... for free or at seriously reduced cost. If it is a time thing, definitely make time because the truth is you could die if an endocrine problem goes untreated. My husband lost half of each eyebrow and the rest was thinning, heck his hair loss was bad too, and it turns out he has hypothyroid (no clue on the cause). He was off his meds for 6 weeks so he could have a special test done and it started all over again. BUT he has been back on for about a week and his eyebrows are almost filled back in. Heck his hair loss stopped and regrowth has begun again. Kind of weird I know but that is how it works for him.

His doctor said that if I hadn't pushed for the testing that he might have died because it went untreated for so long. I hope and pray you get tested and have some nutritional tests run too. Good luck.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/13/2007 4:07 PM (GMT -6)   
redrose77 said...
If your inability to have the test done is a money thing most hospitals have a program where low income people can get reduced cost or free services like lab work. Also a university medical center will have an even more inclusive program where you can see any doctor, have any test, be hospitalize, etc... for free or at seriously reduced cost. If it is a time thing, definitely make time because the truth is you could die if an endocrine problem goes untreated. My husband lost half of each eyebrow and the rest was thinning, heck his hair loss was bad too, and it turns out he has hypothyroid (no clue on the cause). He was off his meds for 6 weeks so he could have a special test done and it started all over again. BUT he has been back on for about a week and his eyebrows are almost filled back in. Heck his hair loss stopped and regrowth has begun again. Kind of weird I know but that is how it works for him.

His doctor said that if I hadn't pushed for the testing that he might have died because it went untreated for so long. I hope and pray you get tested and have some nutritional tests run too. Good luck.


Yeah, I'm looking into doctors I can see, and tests I can have done because it's really worrying me, quite a bit.. but it just started after I started new medicines, but I called one of the nurses that work at the clinic I went too, and she said that it wasn't a side effect of any medicine I'm on.. so I will go get that checked, as soon as humanly possible.
Thank you.
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/13/2007 4:30 PM (GMT -6)   
I wish I could be more help. I used to keep track of all the ways to get free or nearly free health care but my husband got a job with insurance (what seems like God's own insurance most of the time). So I stopped paying attention. I hope that you are able to get the tests run ASAP, there are lots of programs out there that can help if it is financial issues preventing you from getting it done.Sounds like you have a serious combination of problems. I do not recognize any of your meds as lupus meds (I could be wrong) and am wondering why you aren't on anything for the SLE. Oh yeah, there are programs that will get your meds for free if you have no prescription insurance and have a low enough income or require enough expensive medication. That is another benefit of the university medical center sliding scale fee thing- prescriptions are usually included.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/13/2007 9:11 PM (GMT -6)   
redrose77 said...
I wish I could be more help. I used to keep track of all the ways to get free or nearly free health care but my husband got a job with insurance (what seems like God's own insurance most of the time). So I stopped paying attention. I hope that you are able to get the tests run ASAP, there are lots of programs out there that can help if it is financial issues preventing you from getting it done.Sounds like you have a serious combination of problems. I do not recognize any of your meds as lupus meds (I could be wrong) and am wondering why you aren't on anything for the SLE. Oh yeah, there are programs that will get your meds for free if you have no prescription insurance and have a low enough income or require enough expensive medication. That is another benefit of the university medical center sliding scale fee thing- prescriptions are usually included.


They were going to put me on plaqunil (sp) but, they were worried about giving me that with the seizures, and I've had shots of cortizone but it's made my heart rate go up, so right now I'm waiting to see another rhuemotologist (I can never spell this stuff right) So right now they're just treating the symptoms of a few things that is wrong.. hopefully I can get more tests done and find out what medicines are right for me. Right now it's been really hard. I'm so tired most the time, I mean more than usual... and some things are starting to really scare me, but I'm only 25 years old and I refuse to just let these things happen, and not fight it.. I'm currently really fighting depression.. who wouldn't? Thank you for the advice, I'm trying to get ahold of clinics and doctors I can see.
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 11/14/2007 11:04 PM (GMT -6)   
Rebecca, thyroid alone usually doesn't cause eyelash falling out. The sides of the brows can and your hair can thin, but this is due to the thyroid affecting your FSH. What they are supposed to do is find out if your thyroid problem is truly from your thyroid or caused by your pituitary, which can cause other problems some of which you describe. I posted something about the patientadvocate.org they have a tollfree number and will find you all the free resources in your area, you speak to a real person, and they will help you to get medicaid or whatever to some extent and can even help with money for meds and other stuff sometimes. You should call there ans see if they can help.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/15/2007 12:25 AM (GMT -6)   
Hi Rebecca, I don't have anything to add but I can relate to the hair loss. I've been losing my hair on my head for about 4 years. Now I have patches on my legs because my hair doesn'tr grow there much either. I could go for a couple of months literally without shaving my legs. Weird thing is my fingernails grow like crazy.
I hope you are able to ge to the bottom of this soon
hugs
carol
God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/15/2007 1:22 AM (GMT -6)   
I am actually so darned happy about the leg hair. Now a month of growth is less than what I used to have in 3 days. The loss of my regular hair is really hard to deal with though. A single hair wash and the drain is clogged. I hate that.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 11/15/2007 4:47 PM (GMT -6)   
The hair loss on the legs, I have with no steroids and it occurs with my vitiligo. Body hair loss is called alopecia:

In the Merck manual online, this is criteria for polyendo def. sydrome type III:

"Impairment of one gland by autoimmune disease is frequently followed by impairment of other glands, resulting in multiple endocrine failure.Three patterns of autoimmune failure have been described ..."

"Type III: Type III is characterized by glandular failure in adults, particularly middle-aged women. It does not involve the adrenal cortex but includes at least 2 of the following: thyroid deficiency, type 1 diabetes, pernicious anemia, vitiligo, and alopecia. Inheritance may follow an autosomal dominant pattern with incomplete penetrance."

The link is here:
http://www.merck.com/mmpe/sec12/ch154/ch154a.html


I got this from wikipedia--I don't usually but they had a good bit about it and the entry was good:
"In medicine, autoimmune polyendocrine syndromes are a heterogeneous group of rare diseases characterised by autoimmune activity against more than one endocrine organs, although non-endocrine organs can be affected.

There are three "autoimmune polyendocrine syndromes", and a number of other diseases which have endocrine autoimmunity as one of their features."

and this about disease management:

"In principle, the component diseases are managed as usual. The challenge is to detect the possibility of any of the above syndromes, and to anticipate other manifestations. For example, in a patient with known Type 2 autoimmune polyendocrine syndrome but no features of Addison's disease, regular screening for antibodies against 21-hydroxylase (a feature of Addison's) may prompt early intervention and hydrocortisone replacement to prevent characteristic crises."

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

You may have been dx with it and not even know it. Theres specific testing and treatment that can prevent it from getting worse. Yeast infections and celiac disease are components of some of these patterns and they are genetic.

The docs don't take this stuff very seriously because they don't live with it and if I lost all the hair on my legs I'd be happy and they figure well, you got lupus you know, there is nothing we can do, its a side effect from the steroids. But it might be a sign of something else or that an endo gland is going or has a problem, and you might end up with better steroid therapy if you get it diagnosed and get all your endo tested and treated. I don't know. But if they are giving us steroids, there might be some point that glands stop functioning on their own. and if you don't take steroids that much, it might be a sign of something else. I know from what i read that polyendocrine deficiency progresses to Addisons with the onset of diabetes, which is what they are testing me for and that is not something I want to have at all. In my case I will probably be on a daily dose of a lower side effect kind of corticosteroid like prednisone, I guess there are other steroids with lower side effects, so that I don't get the cushings type problems because of taking it every day. And I don't want to lose all my hair, its getting thin enough!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/16/2007 1:46 AM (GMT -6)   
I understand about losing hair. I hate it, but mine is tied to a couple of factors. 1 is my nutritional status. Another is the pregnancy, my hormones are slightly different than most women's. And the final one is simply that my hair falls out no matter what. I also know that medication contributes as does the lupus. The leg hair I dunno what to think but sure don't want it back to normal.

I may end up with a full endo screening anyway. We will need to check a few systems just because of the pregnancy. I have to reschedule my kidney specialist apt. I hate doctors visits.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 11/17/2007 11:35 PM (GMT -6)   
I'm with you there, on hating doctor visits. I think my New Years resolution will be to stay out of doctors offices and ers. They never fix anything anyway or figure out what is wrong, so its just a big waste of money alot of the time for me. They still can't tell me why I have hyperpigmentation after 15 years and the only thing that causes it is adrenals so I'm fed up. Getting your FSH tested is a good idea because it can really make you goofy and uncomfortable when that kind of stuff is out of whack. So often we accept a level of care that isn't really good enough, but on the other hand, the docs have to be willing to give their patients a better quality of life, and most don't or don't know how, so what can you do. Heck, we work harder fixing computers than they do usually! Hope the baby's doing good and you and forgot to say congrats on your class getting paid for. I'm in such a funk lately, my body, endorine, sugar whatever it is is just bouncing all over. I wish I'd lose my leg hair, it just turned white in most spots, pure white, then I have some bald patches, then I have areas where my skin is pure white and very black. It's just lovely. Well take care!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/18/2007 2:08 PM (GMT -6)   
Marji, I haven't lost all the hair on my legs but the backs have a large area that has no hair and the rest grows so slow that if I am unable to shave my legs for 3 months I have less than an inch of growth. Used to be 3 days left me with an inch. I am so glad that it slowed down, cause bending over or putting my leg up high enough to shave is really painful. My husband usually ends up helping me.

You want to hear something funny? My husband is trained to fix computers but he knew what was wrong with me years before I was diagnosed. He still suspects there is at least one more problem lurking that is going to take a while. He is usually right.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone

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