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Comment by pauliegirl on March 18, 2018 at 1:30am

I believe  that there is a genetic predisposition to this disease. I believe that there is at least one environmental trigger to this disease, namely chemical sunscreen. Chemical sunscreens are  known endocrine disruptors and I believe that prolonged use of chemical sunscreen ingredients on my face for a number of years damaged the oil quality and follicles of my hair On and around my face as well as my four arms. I feel that stress can be a factor and I also feel that being in. Minute pause was a factor as well.

 As of recently I am right along with several of you who are believing that leaky gut is a part of all this. My research has shown me that leaky gut can cause autoimmune disorders as well as other diseases like cancer and mental health disease, as well as gastrointestinal disease. For any of you who don’t know, wiki gun is when we take in  food that is processed or has chemicals, and also some medications. These disrupt the layer in our intestines which then allows digesting food to get through. Then our bodies respond by going on a sort of attack but the attack goes awry and other body systems are attacked/damaged.  So in the past two weeks I have started myself on the autoimmune protocol diet. It is very strict but not all of it is forever! One expert did say though that those of us  was with autoimmune disease should never ever have gluten again. That will not be fun but if it will make my body healthy and happy I will comply! Oh how I will miss you cookies and birthday cake! ...

Comment by pauliegirl on March 18, 2018 at 1:17am

I have been writing a terribly long post and see more of you all chiming in. Such a truly good group of women!! I have to send my reply in parts as it’s so long. So much to say! I do apologize for the lengthiness but wanted to share and hopefully some info will help...  

Lynn555, Along with the others, I am sorry for you and your dad and all of your family for the difficult diagnosis and all that goes along with it. And now this. I feel for you in your desperation and pain/discomforts. My first complaint 2.5 yrs ago was to my internist regarding my disappearing brows. She did lab work and found thyroid fine. Ferritin (iron) was low so we started treating with oyC iron. (Take with OJ! It boosts absorption by about 30%!). End of story except she was agreeable to rx Latisse per my request (a friend took it and her brows started to thicken and I was like hmmmm). (Sidenote I later got microblading and LOVE it!) Anyways, two months later when I saw a pic of myself with hair tucked behind my ear, I was like wth it looks like I’m going through chemo on the left side of my head! Asked hairdresser a week later and he said he noticed something last haircut or two (said NOTHING...grrrr!) and this sent me into a panic. Can’t believe I didn’t notice on my own. Embarrassing! Made a derm appt but that wasn’t available for 6 weeks. 10 days later my sister was doing research and she figured it out :( Devastating! It seemed dead-on FFA. She sent me a link to the Belgravia Center for hair loss in the UK (I live near Chicago). I sent in pictures, filled out a questionnaire and sent it at 11pm. I got up for work in the AM to see an email where they basically told me straight-up that I had FFA and needed to get a biopsy to confirm. Which I did. So that was the beginning of things 2 1/4 yrs ago.
I have read sooooo much and tried soooo many things and seen a slew of doctors. I have learned much from this blog. Sometimes I have found it good to read the blog and others it was too hard emotionally so I step away.
I have so much to say and I will try to keep it to a minimum!! .....

Comment by Liz Lov on March 18, 2018 at 12:47am

Other good books along these lines:
Medical Medium and Thyroid Healing by Anthony William.
Have you had your thyroid checked by the way? 

Comment by Liz Lov on March 18, 2018 at 12:45am

Hin Lynn555, Sorry to hear of your Dad's diagnosis, such a tough time.
It's great that you have been taking b12, Vit D, iron and a mutlivitamin daily, that will help with your general health. I would also recommend that you read up on 'gut health', so much research now points to the fact that a healthy  gut helps in so many ways.
I'm not saying it will help with an ffa diagnosis but eating foods that don't cause intolerances in your body will help your body overall and will definitely keep up your defences so you can deal with stress etc.
I was diagnosed with 'leaky gut' some time ago and although I was already mostly vegetarian , I also cut out dairy which resulted in life ling excess clearing up almost right away.
My vit D, B, C were very low, I now take supplements.
This book by Dr Michael Mosley explains a healthy gut really clearly"
'The Clever Gut Diet' available on Amazon of course.
My thoughts are that if you support your body from within, feeling healthy will help you deal with what is going on in your life in general.
I hope this helps, such a difficult time for you.
Liz Lov

Comment by Lynn555 on March 17, 2018 at 11:05pm

Hi AnnieMay and illustr8r, thank you for your posts. No I haven't noticed any eyebrow loss right now. But my eyebrows have been sparse since I plucked them back in the day. :)  I just fill them in daily. I'm 43 and recently my cycles have been changing and I am perimenopausal. So maybe that has something to do with it as well. At the walk in clinic I was told to take biotin as well. I've actually been taking b12, Vit D, iron and a mutlivitamin daily for months. Only my iron is low. Everything else is normal. 

Pretty much it is in the stage that no one believes me except for 1 nurse at work who said yes it is thin. My hairline is very moth bitten looking. I barely brush my hair lately due to how tender it is but it seems a bit better today. The pain and tingling and itchy was so bad about a week ago I thought I would go insane.

Basically, I just want a diagnosis so I can move forward. I don't want to use rogaine or steriods at this point. I've been looking at wigs instead and hats and scarves. I just don't want to jeopardize my health with medications that probably won't work. I've been sick previously in my life and I finally had surgery and am feeling myself again. I feel sick at the thought of losing my hair but at the same time I am grateful to not be in chronic pain anymore. 

But yeah I think the stress of my Dad's diagnosis plus my husband was at sea when I found out and then a pipe burst in our house, and I got a really nasty virus that was going around, I think this all has pushed me over the edge! 

Thank you all for listening and understanding. The worst thing is feeling so alone in this and not having anyone understand. 

Comment by AnnieMay on March 17, 2018 at 10:51pm

Hi Lynn555- I'm so so sorry for your Dad's diagnosis. Your story is similar to mine as this started for me last year when my Dad was diagnosed with leukemia. A very stressful time for me. I truly believe that stress exacerbates FFA so please do whatever you can to take care of yourself.

Like many of us here my hair was always thick (actually too thick) but when I started to lose my eyebrows I went to my internist and she did thyroid tests, Ferratin etc but nothing. Do you have eyebrow loss?

Then I started to lose patches of hair in front of my ears and my temples and all they told me was to take Biotin. Honeslty all I heard from everyone was "it is age related hairloss" (I was 59). But I knew this was different.

I finally demanded a referral to a dermatologist but she told me to use minoxidil and sent me on my way. And then it started to feel like my scalp was SO sensitive (itching, burning. .). It comes and goes but it still hurts if I comb my hair the wrong way and taking a shower can be so painful. It totally feels like bugs crawling all over my head and it's awful. This and the effects this has had on my skin are the issues that affect me the most.

On my own I again demanded a referral to a dermatologist that specializes in hairloss issues. At my first appt she knew immediately that it might be FFA. And a biopsy confirmed the diagnosis. 

I'm sorry this is so long. This has been such a journey for me. No easy answers for any of us. It seems that many of us share similar stories but we are also different in many ways.

I would try to go to skip some of these exhausting steps and get a referral to a dermatologist that specializes in hairloss and FFA if you can. 

I don't know what I would do without the support here. Look at the previous posts here. They help alot. We're all here for you. 

Comment by illustr8r on March 17, 2018 at 10:19pm

@Lynn555 A lot of us self diagnosed and clued in our doctors to what was happening. It took me 2 years to finally get diagnosed after hearing “as we age” as an excuse for my hairloss concern. Get your iron, Vitamin D and B12 levels checked. During my last flare, I was so itchy from head to toe, impossible to explain and impossible to cure with lotions and potions. Turned out I had a Vitamin B12 deficiency. After that got fixed I felt 1000x better. Too much sugar and gluten also tends to make me itchy.

i have fine hair too and I used to have more of it. I’d say I’ve lost about 30% overall with my temples and sides being the worst. For now, I can hide it with a pixie cut. Fingers crossed.

Comment by Lynn555 on March 17, 2018 at 9:06pm

CurlyK, I have always had very fine hair but quite a lot of it, hairdresser's always commented. Then recently, I guess over a month ago, I put my hair up in french braids amd took some pics. I was shocked to see that my sides had become so thin and as though my hairline had receded. 

Then I started getting weird tingling and itching all over my scalp but primarily on the sides and front of my head. It honestly feels like bugs walking. Then the pain in the shower started when the sprays hit my hairline. I also noticed it on my back sometimes. I also started getting itchy spots randomly all over my body, but not super itchy, just annoying. 

KarenD, I don't have an appointment with a dermatologist yet but I see my family doctor on the 29th and am going to ask him for a referral. I was endlessly googling the symptoms but my thin spots didn't match any other hairloss and then I came across frontal fibrosing alopecia and it was an ah-ha moment. 

I'm still getting tingling and itching on my scalp, and over my body too but mostly on my scalp. I don't see any rash or bumps but the skin looks very white and scaly underneath. I'm in Victoria BC Canada. 

Comment by KarenD on March 17, 2018 at 8:07pm

Lynn555, Is your appointment with a dermatologist?  My suggestion would be find a dermatologist who is an expert in hair/FFA to help you find your answers.  Maybe tell us where you are located and hopefully somebody could recommend a specialist who they have found that has been of help to them.  Sometimes it takes a few tries to find a doctor who really specializes and can help with the diagnosis and treatment.  Sorry to hear about your father's diagnosis.  

Comment by CurlyK on March 17, 2018 at 7:43pm

Lynn555, how long have you been noticing your symptoms?

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