Alopecia

[Súil Eile]

Hi all, I recently started to lose quite a bit of my hair. One shower and the plug-hole would be blocked with hair, my hairbrush was full of hair even after a quick brush, and my hair is about half the volume it used to be. I went to my GP and she diagnosed alopecia areata. She suspects it's probably related to my hypothyroidism. I have one small spot devoid of hair (thankfully not visible yet!), and while it might not be noticeable to others my hair is nothing like it used to be.

I know this is a forum about DES, but I've always found everyone on here to be so supportive and I'm still in shock about this. I had gotten used to the fact that my eyes were no longer going to be something I could positively focus on - I long ago dumped my eye shadows and invested in some bright coloured lipstick. But I've always liked my hair, and it gave me confidence even when my eyes felt terrible. Now I haven't been able to look in the mirror for 2 days. I feel like everything attractive and feminine about me is wearing away.

Has anyone on here experienced alopecia or know someone who has? It's all very scary for me right now

[Jenn1]

Hi,

I'm sorry to read about your recent issues, but I do hope that you wont let this new 'blip' in your life take over your confidence and also it is really important to keep stress levels to a minimum. I dont have experience with hair loss, but I do know of some friends who have and although there is no miracle cure, you can be kind to your body by using coconut oil and massage it into your hair for a few minutes and let it soak in for a few hours before rinsing out in the bath or shower or leave on overnight and do this for a few times a week for a few months and see how your hair feels and looks etc... to see if it helps. Are you taking any foods or supplements that the doctors say may help and are safe for you to take also? Do you try different hairstyles so your fall out isnt noticeable and keep thinking positively, because your body can heal itself.

Also, I would be interested to hear how your thyroid affects your eyes and their dryness etc... if you could tell us about whether the eye issues started with the thyroid issues, either hyper or hypo/euthyroid, what your diagnosis is for the eyes, treatments you use etc. I know most doctors dismiss thyroid related eye issues unless its severe graves opthamology or moderate etc... but i hear many have dry eye symptoms and irritation and pain and their fluctuating thyroid levels can affect how their eyes feel daily.

[Súil Eile]

Thanks so much for your support Jenn

I haven't started taking any supplements etc yet. It's only been 6 weeks since my Eltroxin (for under-active thyroid) was increased and I have to wait 8 weeks from the start date to get my levels rechecked so that my system has time to absorb it properly and the reading is accurate. When I get that blood test, my GP is also going to test for anemia, B12 deficiency, diabetes, and anything else she can think of. I have a suspicion it probably is thyroid related, as my last blood test showed I'm producing less hormones and my Eltroxin was increased accordingly. I'll go back to my endochrinologist with the new results too.

I'm going to start using volumising shampoo and look into hair health supplements. I'll buy some coconut oil too and give it a go My GP has advised to leave it as long as possible between washing my hair, and to avoid tight hairstyles that could put pressure on the follicles. That the hair is already starting to grow back is very reassuring.

I have (or had!) really thick hair and lots of it. I used to hate it as a child as it was so frizzy. I only came to appreciate it as an adult and grew to love it. Though it always does what it wants, regardless of how I try to style it! If I had thinner hair to start with the loss would be a lot more noticeable, so that's something to be thankful for. It also means that it's not as obvious to strangers that I've had any hair loss at all. But I definitely notice it. I'm almost afraid to touch it at this stage. Not knowing how bad it'll get is possibly the worst part. That's a path I've already been down with my eyes and not one I thought I'd have to follow again.

Re thyroid and my eyes - I had been getting my thyroid levels checked for years by my GP who assured me they were fine and any variations were sub-clinical. It was actually my opthamologist who refered me to an endochrinologist (the one he goes to himself and trusts). She said my level of thyroid anti-bodies were extremely high. So I started on 25mcg Eltroxin. Because I had been underactive for so long, my system had 're-set' itself and had a problem adjusting to higher levels of thyroid hormones. So I had a few months of heart palpitations, shortness of breath, hot flushes, tiredness, and nausea. My Eltroxin does had to be increased very gradually and it's taken me over a year to reach the 125mcg dose I'm on now.

The long term result of treating my thyroid has been that the frequency of my eye pain has reduced from 70/ 80% of the time to about 50%. That has made a huge difference to how I feel. I also no longer get as many aches and pains (I've been tested for arthritis in the past). Unfortunately, it hasn't made much of an impact on the dryness of my eyes. I'm not sure how my eyes and hypothyroidism are connected, but I'm hopeful that once I get my thyroid levels stabilised it might have a positive impact on my eyes.

[daphane]

I have Sjrogens which causes my dry eye. My hair though-well about 6 months ago i notice that my hair is really dry and nothing i get seems to help. About one and a half months ago it started falling out in hand fulls, I have very long hair and lots of it so I hope this ends soon. I believe alopecia is a side effect of sjrogens. I hear and read so much stuff and the doctors tell me nothing. I just take one day at a time and just pray that all this comes to an end or at least get a little better.

[Súil Eile]

How is your hair now Daphane? How have you coped with the change? From the brief amount of reading I've done there seems to be a lot of unfounded theories and treatments floating around the internet. The basic truth seems to be that there is no immediate treatment, and that it is usually caused by or related to an underlying condition. On a positive note, there seem to be a lot of reports of it rectifying naturally after a while. Fingers crossed!

It's not knowing how bad it'll get that I find the hardest.

Did you find other Sjogren symptoms getting worse when you started losing your hair?

[abbygirl]

I have had hairloss too and I have Hasimotos disease which is an autoimmune thyroid disease. I have had 3 episodes of severe hairloss in the last 4 years. I will tell you that stress can play a large role in your hairloss!! Usually the hairloss begins 3 months after the stress/trauma or whatever is causing the hairloss. Try not to panic.. It will only make matters worse and stress will also negatively effect your thyroid. When I was at my most stressed I went from being hypo to hyper and that made for a 4 month shedding phase. It will stop, just be kind to yourself and get a nice shorter haircut.. It will help your confidence and make your hair feel thicker. My hair was my best feature too and no one else would notice but I do!!

[mmc51264]

I have was diagnosed with hypothyroidism 20 years ago. have always had somewhat thin hair. I had my first child when I was 37. No problems other than gestational diabetes that was managed by diet. Had my second fight before my 40th birthday. this pregnancy was extremely hard on my body. ended up on insulin, thyroid was ALL over the place. After he was born, thyroid still haywire, and about 3 month s after he was born, almost all my hair fell out. to this day, I do not have to shave my legs. My youngest is 8. I started having symptoms of dry eye in 2006 and am at wits rnd right now. I have found that zinc has helped with my hair and nails, but my thyroid is still fluctuating. They have ruled out Slogrens , RA and lupus. But I am type 2 diabetic, my youngest is type one, so autoimmune runs in our family. I am getting ready to get fitted for sclerals.
I have tried some different shampoos and zinc and my hair is manageable. Hang in there!!!!!!!

[DCRdryeye]

Hair loss in women often occurs post menopausal after the age of 60. It begins by thinning out slowly and over time gets worse. How long have you taken medication to increase thyroid production? I'm also thinking it's most likely hormonal imbalance with progesterone, estrogen and testosterone. If your progesterone goes down, testosterone will be more dominant and hair loss can be the result. Endocrinologists don't necessarily always pick up these imbalances, especially if they only rely on blood tests. But see how you go. If he or she claims your normal and you leave without a solution, I suggest you see a clinic who utilize saliva testing and offer bioidentical hormones.

Keep us informed, and best of luck!!

[regina]

I find this amazing that a fairly large group of us are having the same problems and or symptoms.
I am a 52/f , peri menopause, negative for sjorgrens but still experience dry eyes, dry mouth, I have hypo thyroidism and I lose my hair in waves also! I keep thinking there has got to be a connection...but what??? My hair loss seems to fall out for about 6 months. I too luckily have lots of hair, the only thing I have that I still love on myself! lol When this happens I keep getting my hair cut shorter and into more layers so that I have a shag look. After about 6 months, the shedding slows down and it finally starts to regrow itself. What I have also found is that my hair becomes a different consistency. Its softer and limper and smells dirty sooner (if that makes sense). It has no body. Somedays it feels like the hair is stuck to my head.

I dont know...but there must be some kind of cause ....effect....connection to all this!

[sunshinelover]

Yes, and like some other people here I am inclined to think it can be hormonal imbalances, may be caused by stress, diet and /or perimenopause

[eyewillprevail]

Hi! Yes! I am a 39 year old woman and I have alopecia areata - 'totalis' in fact (no hair on head) as of about 4 years ago. I just wrote you a long reply and lost it because the system logged me out - argh! Anyway, don't have time now to reply again but will write soon. Basically I know where you're at and want to tell you that it won't be as bad as you think. I find dry eye to be more of a nuisance for sure. Hang in there - we'll share info and get through it!! It's a bum deal to have both problems but still a workable situation and there is much reason for hope :-)

[Mawsky]

Hi, I have alopecia Areata, I have had it for ten years and don't feel at this time that my dry eyes and AA are related, there are many different kinds and reasons for hair loss, but Alopecia Areata is a stand alone auto immune disease, which doesn't mean you are not more inclined to have other auto immune issues, like thyroid, lupus, sjogrens,RA, the list goes on, but many with AA don't have any other major disease, and most are healthy. I have lost most of the hair not just on my head but my arms, legs, eyebrows, eyelashes, which is called Alopecia universalis. If you have any questions about Alopecia, I'm there for you, just PM me, I'd love share, and help. Hang in there, if I could only be cured of one I'd choose my dry eyes, they effect my life so much more than AA.

[Súil Eile]

Wow! I just want to say thank you all so much for your wonderful posts and messages. The support on this forum in incredible. I never feel like I'm alone when I'm on here. I'm a little overwhelmed by the support.

Abbygirl - my GP had asked me about stress. I haven't been feeling particularly stressed lately, but what you said about alopecia being a delayed reaction from stress rings a bell. I was quite stressed during the summer, so maybe it took a while to take affect. Thanks for that insight I'm going to get my hair cut next week. It's a little longer now than I'd normally have it so hopefully a shorter cut will make it feel thicker and more familiar.

MMC - that sounds like a very tough pregnancy! My thyroid is still fluctuating too; it makes it very difficult to judge if any treatments etc are working because I don't have a constant baseline. My GP is going to test me for diabetes. I got tested years ago but no harm to check again. Wouldn't it be wonderful if alopecia was solely restricted to legs! But I guess that would be too convenient!

DCR - I'm in my late 20s so I'm hoping it's not menopause!!! Though the changes that occur during menopause, such as increased dry eye and hair loss, are things I am concerned about. I might ask my endochrinologist if exploring different forms of the Pill might be useful. Thanks for the info on that test, I'll definitely look into it. I've been on thryoid medication for just over a year now, so I'm assuming it will take some time yet for symptoms to settle and for any side affects to surface.

Regina - I'm really surprised too! I actually didn't expect much of a response to a thread about alopecia, but I'm amazed at how common it seems to be and how many of us on here suffer from it. There is so much that is unknown about auto-immune conditions and hormones and how it's all connected. The difficulties in securing a diagnosis for anything hormone related is frustrating. A common theme with alopecia though is that the hair does generally grow back...that's such a relief to read.

Sunshinelover - If only hormones were easier to figure out! Stress may be a factor for me that I hadn't considered before. I'm going to have a glass of wine now as part of my alopecia anti-stress treatment

Eyewillprevail - Totalis! That must be so tough. How are you getting on now? Thanks for the support, I had a bit of a shock when the GP said the word 'alopecia'! But I'm getting my head around the fact that it's not the end of the world, and like you and Mawksy said it won't affect me as much as my eyes do. I used volumising shampoo yesterday for the first time in my life and I feel much better today.

Mawksy - I don't think my eyes and alopecia are related either. I also don't think my eyes are closely related to my thyroid, though I will only know for certain when my thyroid settles. I do think though that the alopecia is connected to thyroid and /or stress. Over the ten years, have you had times when your hair has at least partially grown back or has it been a continuous loss? That must be difficult to deal with along with all the eye problems.

Thank you all again so much. I've actually come to realise over the past few days that I'm not as concerned about my appearance as I used to be. There are other much more important things in life to be thankful for and plenty of stuff to worry about without worrying about how I look. Changing my shampoo has made me much more comfortable, and I'm going to look at supplements such as zinc etc.

I never would have guessed that so many people on here would have experienced alopecia! It's certainly an eye opener (no pun intended!!)

[Mawsky]

Hi again, to answer your questions, yes my hair has fallen out and grown back many times, over the years, I was fortunate that the particular pattern I have started with one large spot near the nape of my neck, it was just one spot which grew back, I then lost another area near my neck, eventually my loss turned into a Alopecia Areata pattern called Ophiasis I lost most of the hair on the underside above my neck and around my ears, I was able to hide it pretty well until several months ago when I began having smooth round spots in the upper areas, two months ago I buzzed what was left and got a great human hair prosthetic type of wig. I don't have any issues with my thyroid, or sjogrens syndrome all of which I was checked for early on. If you do have Alopecia Areata, (remember Alopecia just means hair loss) the Areata part refers to the type of hair loss (which is a true auto immune disease) I belong to a support group called alopecia world, they are great and therebis a lot of information on there that may be helpful to you. Stress does play it's role with AA but it isn't the full answer, many babies and small children have it too. One important thing to remember that although I have one of the more server forms of it, most will get one or two spot, they grow back and never fall out again, you have this statistic on your side.
Christine