Hey Everyone.

Not long ago, someone posted about the Coimbra Protocol. I hadn't heard of it, and did a little researching, and it appears that high doses of Vitamin D are a large part of it. I then did a search in Google Scholar regarding vitamin D deficiency and autoimmune disorders. Sure enough, a large amount of literature popped up that stated vitamin D deficiency is common in autoimmune disorders, including various types of alopecia and some therapies addressing this issue have been helpful for certain types of autoimmune disorders (Lupus was one of them, I think). I didn't see anything specifically related to treating FFA with vitamin D, but it has me wondering...

There was a study a while back that showed that sunscreen use was more common in women with FFA. You know one of the things the sun light does, right?- It stimulates production of vitamin D. Coincidence??

In relation to the sunscreen study, there was a response to it by other researchers who said they didn't think sunscreen was the issue and that people need to remember the study wasn't experimental or even correlational, merely observational. They stressed that we shouldn't draw conclusions from the results. I guess I just wanted to throw that out there.

I'm not sure what to think about all of this? Do any of you know if you have a vitamin D deficiency?

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Hi all-I haven't posted in awhile either but I'm very interested in all of the replies. Like many of you I started losing my eyebrows a couple of years ago then last summer my scalp started itching like crazy and the texture of my hair completely changed within months to very thin and more "straw" like with the start of hair loss in my sideburns but also with a lot of breakage which I still have everyday. Hard to explain but it honestly still feels like it isn't even my hair. The texture of my skin has changed including the awful shiny forehead. All over the course of the last year.

It is such a mystery to me as to why this started because it seemed like such a dramatic change. I could honestly "feel" the changes in me. Of course the dr's said it was age related hair loss but it felt much bigger than that to me. I finally found a dermatologist specializing in hair loss that gave me the dreaded diagnosis.

I have been using Oil of Olay with sunscreen for years as well as mineral makeup. You all have inspired me to look at other options. I've also been diagnosed with osteoporosis so I also want to look at things more from the inside out. But I need someone to help guide me with a plan. I like my dermatologist but she seems to only focus on what topical steroid to give me. It sounds like going to a naturopath might be a good idea. I've also looked into seeing a functional medicine dr here. 

So many variables but there seem to be some things we have in common as we struggle to understand this awful disease. So thankful for this site and all of you

Did your doctor mention to you that you had an autoimmune disease?

Hi Ellen  No. .My dermatologist has really never mentioned that FFA is an auto immune disease. I don't feel like I have anyone looking at the bigger picture of all of this for me. I see my dermatologist and she tells me to use a topical steroid and I see my primary dr and she tells me to take certain drugs for osteoporosis. But I believe there is a link and something connecting autoimmune diseases in people and in me. Something is going on inside me that is bigger than FFA

 

Hi Jess,

I've just recently been diagnosed with FFA and I also have a mild vit D deficiency. Mild though - I was told not to worry too much.

I live in Sydney, Australia and pretty much always have sunscreen on. Anything is better than skin cancer!

-Sam.

Hi again,

There is much more to FFA than losing some hair. I believe there is a connection between a vitamin D receptor variant, oestrogen, osteoporosis, autoimmune disorders, some minor anomalies, ie. sebacious cysts and facial pigmentation (maybe), loss of body hair, and, of course, the particular pattern of FFA. There are some very complicated interactions at play and although the hair loss is terrible for us it may actually be less important than some of the associated problems. It deserves some serious study if only to save us from osteoporosis or thyroid issues. I think menopause does play a part but only in that it changes the hormone balance and this alters the way we handle vitamin D. As I said, it's complicated. Taking vitamin D may or may not help. That depends on whether our bodies can utilise it. Remember, it is needed in your cells and putting heaps of it in your system may not put it where it is needed. I have chosen to stay on a very low dose of HRT but that's not for everyone. All I know is that I don't have osteoporosis while my mother clearly did at the age I am now. That may have been the case anyway but, who knows, we are all experiments with only one participant, and that means that it just isn't statistically significant. 

Vitamin D is extremely important for human body and it’s deficiency can cause serious health issues. The factors that cause Vitamin D deficiency are:

  1. Being overweight
  2. Not eating enough fish
  3. Not getting enough sun

Symptoms of vitamin D deficiency are getting sick really often, tiredness, loss of appetite, bone pain, depression, hair loss. Recently, I gave the analysis to find out what level of vitamin D I have, the result wasn’t pleasant. In my case the deficiency of vitamin D lead to insomnia. I started to visit many doctors and to look for food supplements. There are plenty of products on the market that promise to increase the dose of vitamin D in the body. The doctor prescribed me superfoods from Alpha Wolf Nutrition which is a completely natural sleep enhancing supplement. I hope it will bring my ability to sleep during the night.

I have been interested to follow this thread.  I have FFA & LPP ongoing hair loss despite taking hydroxychloroquine for 2.5 years.  Hair analysis in the autumn revealed I was vitamin D deficient.  I am taking 1000mg daily and hoping for this condition to stabilise no such luck yet though.  I will not give up hope.... 

I take Vitamin D2 (1.25mg) ***50,000*** a week.   I stopped taking the Hydroxychloroquine (200mg) twice a day after taking it for 10 months. After some months (can’t remember how long), I noticed a lot of if shedding. Went back on the med in Nov. 2019 and the shedding has stopped. I have been taking the med twice a day. Am thinking of taking it once a day to see what it does. Still no apparent side effects from the drug.

I also take vitamin D periodically and it helps me feel much better. Also, in order to strengthen my immunity, I take the lozenges to support the immune system, which I order on the website https://immunedefence.info/lozenges. These lozenges contain vitamin C, A, E, which help me both to strengthen the immune system and to recover faster from a cold.

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