Replies to This Discussion

Permalink Reply by KarenGinny - Iowa, US on December 13, 2012 at 1:42pm

I've wondered about this also. I have a history of some of these problems - in 2005 I had a nodule on one side of my thyroid gland removed and have been on thyroid meds since then; I was anemic very badly due to very heavy menstrual cycles in 2008 and needed a blood transfusion to get my blood count normal. And in both of my pregnancies in 2000 and 2002 I developed gestational diabetes, which I controlled with diet and it went away after my sons were born. In recent years I've had regular blood tests that show most everything normal except for auto-immune anti-nuclear anti-bodies being slightly off. But aside from the hair loss, I don't have any other symptoms. I've also been on high blood pressure meds for a long time. Boy, I sound like a mess!! I do have a history of arthritis in my family and I'm afraid I may end up with that eventually. I have lost about 10 pounds in the past year and I am trying to eat healthier and continue to lose weight.

Permalink Reply by Debs on December 14, 2012 at 12:22am

Karen thanks very much for your detailed reply. I think we all need to keep a careful eye on our health in general now we have an autoimmune condition.

Permalink Reply by PJ - MN, USA on December 28, 2012 at 11:24pm

I'm new to this group and still trying to figure it all out. I have frontal fibrosing alopecia lichen plano polaris, Rosacia and Raynauds. Raynauds is also considered an auto immune disease, not sure about the rosacia. My mother has Diabetes and Thyroid issues which are both considered auto immune diseases. From what I've read auto immune diseases are hereditary, but will show up in different forms in each generation. So my daughters are very concerned about what they might end up with. My iron and potassium usually run low. I do seem to be sensitive to alot of things, medications, perfumes and other things.

Permalink Reply by Debs on December 29, 2012 at 3:36am

Hello PJ and welcome to this group. Many thanks for sharing you medical info with the rest of us, the more info we have the better to know what else could happen in the future.

Permalink Reply by chris for hair on January 3, 2013 at 11:19am

She forgot Lupus, which also causes hair loss.
In 2001 I wrote and published a book on living with chronic pain. My site and the book received a great deal of attention and thousands of people wrote to me about their stories. What I learned was that very often when one system in the body has issues, the rest of the body can be affected. So many people end up having more than one issue. Having said that, my best remission came when I finally accepted the fact that my body may be affected but keeping my mind off it keeps me going. At this point I have talked with my doctor and we have agreed that I am not willing to keep taking tests to find out what may be amiss. This only makes me focus on what may be wrong and not living life to the fullest. So far, I have been "diagnosed" with Lupus, Fibromyalgia, Kidney cancer, and late stage cerebra-vascular disease. Since I know I have several aneurysms in my brain that can explode at any time and kill me I have chosen to ignore the rest and have lived far longer than anyone ever thought.
I am not recommending people stop seeing their doctors, but also don't buy into everything they say. A diagnosis is just an opinion, and there is so much they still don't know.

Permalink Reply by Debs on January 4, 2013 at 4:43am

Chris you are so right that we can focus on our 'diagnosis' and not enjoy each day as it comes. We all only have one life and you are spot on when you say that we can focus on what is wrong and not live life to the fullest. I wish you a wonderful 2013 and much enjoyment in the coming year. Deb xx

Permalink Reply by KarenGinny - Iowa, US on January 4, 2013 at 5:36pm

Chris and Debs, I think you are both right in that if we dwell on our problems all the time it will not get better. Since my diagnosis of FFA, I've gone through different stages of grief about losing my hair, and since my doctor didn't advise my taking any other meds for it, I've come to accept that it is the way it is and I can't change it. I can only deal with it the best I can by changing hairstyles, doing what I can to look my best or hide it with a hat, and eventually going with a wig if I need to. I know being stressed out about it will only make it worse. I just need to focus on being well and happy and taking each day as it comes. I have a wonderful husband and two sweet boys to take care of and they deserve the best mom and wife they can get. :)

Permalink Reply by Susanne on January 29, 2013 at 12:17pm

I've heard that, too, which makes me think that a holistic approach to the issue makes a lot of sense, don't you? I have no intention of getting another autoimmune disease. FFA is plenty to handle! I'm going at it from the dietary angle and we'll see what happens. Best of luck to you.

Permalink Reply by Linda Australia on February 26, 2013 at 2:40pm

I have found out more from this website (thank you everyone) and the internet than from the dermatologist I recently consulted. I have vitiligo as well as FFA, which I understand is another autoimmune disease. I have made radical changes to my diet over the past couple of weeks and am also consulting a homeopath. What have I got to lose, I feel that I must try to get my immune system back to normal. I don't go back to the dermatologist until next month. I don't understand? He did not even suggest that I try to improve my immune system? I am currently using diprosone daily on my scalp. From my understanding this just help control inflammation. It looks like I am on a whole new journey in life (I'm a little over new challenges) and am finding out something new everyday. I have started wearing a scarf because of my hair loss from hairline and top of my head. The vitiligo doesn't bother me unless I become tanned ... then it is obvious.