Replies to This Discussion

Permalink Reply by CarolJ on April 22, 2017 at 1:26pm

Hi, I'm 48 also and was diagnosed alittle over a year ago. I had the thinning eyebrows and some hairloss at the front of my hair and was initially tested for a thyroid issue but it came back normal. I then went to see a functional medicine doctor and was introduced to the concept of "leaky gut". I finally went to a dermatologist and was diagnosed with FFA and was told it's an autoimmune condition. So I then started reaearching how to treat autoimmune conditions and circled back around to the leaky gut thing. So long story short...I started the AIP diet and did exactly what it said to do (cut out certain foods and introduced those back in slowly) and after a few months I really felt it was working so I stuck with it and now a little over a year later I feel as if the hair loss has not gotten any worse...pretty much the same as when i was diagnosed. I was on BC pills for 15 years and they are very hard on your liver and thus your body's ability to detox so I would highly recommend milk thistle as a supplement along with curcumin(antiinflammatory) a really high quality multivitamin and probiotic. I believe this type of "treatment" could also really help with the hashimotos. I know this can be overwhelming but I highly recommend doing some research on autoimmune disease, AIP diet and supplements. I truly feel this is working for me. Good luck!

Also, I have only ever used a topical antiinflammatory solution (clobetisol) on my hairline and have never taken any other oral medicine for FFA. I had asked my doctor about some of the medicines mentioned on here and he said he wouldn't recommend them because of the bad side effects. I did however tell him about the change in diet and supplements and he kind of thought I was crazy so don't expect a conventional doctor to think any of that will do much. But my gut told me to go that route and like I said I really think it's working.

Permalink Reply by Mattsmate on April 22, 2017 at 11:05pm

Thank you for the info. I do not know much about this doctor but she is st UCLA, seems to be the go to for hair loss and her photo shows that she is bald. I feel like if she has any ideas, they may be worth looking into.
For me, the hashimoto's was no surprise because my mom has it but it is well controlled on only a small does of synthroid.
I will look into the AIP diet.

My diet is good and bad. I do Juice Plus trio which floods my body with nutrients from fruits and veggies. I have a shake in the morning and in the evening. I use soy milk which I checked with my internist on and she didn't think it was an issue (I need the extra protein over almond milk because I am also hypoglycemic).
I have also gone towards mostly organic fruits and veggies and some of our meat.

I am wondering have you ever had any sensitivity on your eyelids or the feeling that there is a band around your head? The latter is kind of like feeling like you have your sunglasses on top of your head but don't.

Permalink Reply by CarolJ on April 23, 2017 at 12:46am

I have never experienced any feeling on my head like what you describe or eyelid sensitivity. But I do remember having some itching and sometimes tingling in the areas that are/were effected. Those symptoms have been gone though for quite sometime.

Sounds like if you do look into the AIP diet and decide it might be something for you, you wouldn't have too much trouble since it is recommended to try to do as much organic as possible.

Good luck...I wish you all the best!

Permalink Reply by GEMINIJEANNE on April 26, 2017 at 4:49pm

Hi I've been on this site for a couple of years and have found the information very helpful. I've had FFA for several years now and yes the band around your head is a feeling I have most of the time. I lost all my brows but maintained my lashes . I had the microblading done for my brows which helps alot with my confidence. I think at this point the hairloss has slowed down but only because I have lost pretty much all the front and side hairline.

Permalink Reply by Molly on April 27, 2017 at 1:55pm

Sorry to hear about your diagnosis. I was diagnosed about three years ago, but I noticed problems before that. My main issues were what I thought was a rash on my face and thinning eyebrows,  I hadn't even noticed my thinning hair around my face, or else, I thought it was just part of aging.I wanted to reply to your comment about the sensitivity of your eyelids and the band-like feeling. As much as I hate losing my hair, my distress is caused more by the physical feelings and sensitivity. My skin and scalp often feel like they are "crawling", and I have this weird tightness on my eyelids. I also understand the band feeling. I have described it as feeling like I have a tight hat on over my forehead and hairline. I have to wear my hair off my face because I can't stand the feel of my own hair on my skin. I have tried the various creams etc., as recommended by two dermatologists, but nothing seems to help. I tried plaquinil with great hope only to get an allergic rash. I've begun to look for natural remedies, and I read here in search for new treatments.

Permalink Reply by Tracy on April 23, 2017 at 1:58am

Hi Mattsmate, I'm in LA as well and just had my first appointment with Dr. Goh yesterday (I'm assuming from your posts that you are seeing Dr. Goh?).   It was all so terrifying for me that i don't think I was able to process most of what they were telling me.  She and her staff are really warm and welcoming, which was helpful because I was a nervous wreck.  I honestly still haven't processed this fully yet and feel like there is a bit of throw everything against the wall treatment but am hopeful some of it will work to at least stop it from progressing.  I'd love to hear how your appointment went if you can share after your visit.  I hadn't had a biopsy before seeing her, but she knew right away that I have FFA.  She did a biopsy yesterday but unfortunately I don't think there will be any surprise there.  I had no idea walking into the appointment that I had FFA so I didn't do any research before going.  I wish I was better prepared for the appointment and was able to research FFA beforehand so I could go in with a written list of questions, as it was my brain was just scrambled.

I'm 52 so I was willing to try the propecia, though there seems to be some potential side effects.  She also prescribed a cortisone cream and shampoo - all of which sound a little harsh but i'm willing to give it all a try. She suggested I try Rogaine as well.  So today is only day one for me with all of this and I've heard it's many months before you'll know if it's working or not but I'm willing to try for awhile.  I didn't think to ask about steroid injections, but have since read about them so you might want to ask her about that.  I'll be asking on my next followup visit.  

Regarding your comment about sensitivity on eyelids or a band around your head, I have't had that exactly, but a few years ago when i was losing my eye brows (I assumed it was thyroid and couldn't understand why my thyroid blood work kept coming back normal) I had a weird 'pressure'  and tingling feeling just above my eyebrows and a roughening of the skin.  This was well before my hair started thinning and went away after 6 months to a year.  The skin is no longer rough, but i have zero eyebrows now.

As CarolJ mentioned, I'm going to start looking into various supplements.  I'm a month and a half into Viviscal so I won't know for awhile if that will have any effect.   I do think an anti inflammatory diet is definitely worth a try.  I also heard it might be helpful to avoid gluten.  I've heard saw palmetto is good to try.  I know it's in some hair loss shampoos but am looking into if it would be helpful orally.

Good luck with your appointment.  If it helps, i did feel like I was in the right place and seeing the right Doctor for this condition when I met with Dr. Goh.

 

Permalink Reply by Mattsmate on April 23, 2017 at 12:18pm

Yes, I am seeing Dr. Goh. I live in Ventura County so this is a trek for me but the doc I am seeing here doesn't thrill me.
I will definitely report back.
I am thinking of asking a friend (RN) to go with me as she has a pretty level head and will probably think of questions that I won't.

I did start biotin after my internist suggested it. No harm in it. I have started minoxidil. But all this is in the last week. I am also interested to ask her about latisse. I thought it was for eye lashes but saw something about it being used on eye brows too.
I still have some eyebrow left, more on one side than the other

Permalink Reply by Mattsmate on April 26, 2017 at 10:41pm

So, I had my appointment with Dr. Goh today. She went over my history and measured my loss. We actually looked at a picture from a year ago that showed the beginnings even though I had thought it had started later.

Anyway, she gave me a topical immunosuppressant and said to keep using the minoxidil. We discussed the various oral meds available and the injections.
With the injections, she stated that she had pretty much stopped using those because they tend to thin the scalp skin and did not seem to help a lot.
I go back in 3 months and she will see if there is progress. And then we will possibly add an oral drug. One reason for a bit of caution there is my medical history.
She did note that other than the front, i did not seem to be shedding more than normal elsewhere.

I like her. And did not feel like she rushed me but I still forgot to check a couple of things so I will email her.

Permalink Reply by Tracy on April 27, 2017 at 2:49pm

Thanks for the update. So glad to hear your appointment went well. It is quite a trek for you so thankfully it was worth the trip.  What is the topical immunosuppressant she gave you?  I left with a prescription for 3 things: propecia, ketoconazole shampoo and topical fluocinonide (which is a steroid), so i'm curious about the immunosuppressant.  I have to say i only used the shampoo once, it was awful, my hair came out greasier than before the shampoo.  I'm supposed to use minoxidil with the steroid cream but i feel like it's making me shed more than before.  I've read that minoxidil can cause increased shedding in the beginning, did you experience shedding when you started minoxidil and if so did your hair grow back after the shed? I go back to Dr. Goh at the end of June.  In the mean time i've looked up the leaky gut aspect that everyone is discussing and much of it seems to make sense to me. I've started a strict anti inflammatory diet, am using probiotics and switched from viviscal to a heavier duty hair and nail supplement, just hoping it's not too late for any to take effect.  Good luck with your treatment, hoping the most success possible for you, at least we're in good hands with Dr. Goh so that steadies my nerves a little (if that's possible at this point).

Permalink Reply by Mattsmate on April 27, 2017 at 5:42pm

The topical is mometasone furoate.
I started it last night and I only started the minoxidil like 2 weeks ago. I haven't noticed any additional shedding.

She didn't go with th propecia right away because I had a pulmonary embolism a couple of years ago and there is a remote chance that it could cause a similar issue due to hormone conversion. We are going to talk oral meds more at my next visit.

Permalink Reply by Kathy in Denver on April 23, 2017 at 10:35am

I am always sorry to see the emails form the new members of this crazy club. That was me a few months ago. In addition to the stress and fear, I desperately wanted to connect with people who were going through this and possibly could give hope. This is a great site and it served some good purpose but overtime it really added to my stress so this is the first time I have signed on in 2-3 months. I wanted to get on today to leave some good new for people who may be early in the process. I think what may happen is one it gets too stressful to stay connected after a while for many and secondly, once things get better you just want to get far away from it

MY GOOD NEWS story...in December I started taking plaquinil. The inflammation, itching etc. gradually decreased. By the 3rd month, symptoms were gone. Now in the 4-5th month, I have an increasing amount of hair growth around the scarring. I have been a longtime advocate of healthy eating, yoga, acupuncture. I doubled down on all of that. Rather than an AIP diet, I have been doing the Alcat protocol that is based on idea that inflammation is specific to the person, rather then the same for all. Who know what is right, we just need to move in the best direction...whatever that is for you. I stray from drugs generally so initially plaquinil was a hard thing for me. My doctor said she had a record great success with it as she treats an increasing number of us. I talked with a couple other doctors about it including my eye doctor. As it has been used for other autoimme disorders for many years, there is a lot of data. I spoke directly to one person who has taken it for 18 years for lupus with out any trouble. For me, after learning more, it was a very easy decision.

Take care of yourself and good luck.

Permalink Reply by Mattsmate on April 23, 2017 at 12:14pm

I have been on Juice Plus for just over a year and seen the inflammation in my body really go down since I started it. My face thinned noticeably within 2 months of starting and eating better.
One thing that JP advocates is a gluten-free, plant-based diet. I still eat meat/fish/poultry but I have definitely increased my plant eating and really reduced my gluten. I think that I should try more to eliminate it though.
I already only eat bread on occasion and now choose corn tortillas over flour every time (if I even have a tortilla).
I will look into both diets.

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