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Comment by MJ on February 27, 2014 at 6:41pm

Sally, coincidentally, I am taking slow release ferrous sulfate for a lower ferritan. My Biotin supplement contains 30 mg of zinc because my zinc was very low. Also, my endocrinologist suspects Hasimotos and has ordered further bloodtests in a few months.
MJ

Comment by sallylwess on February 27, 2014 at 6:02pm

I am always interested in how much those of us whom suffer from FFA try to piece together a common thread of medical and personal histories that might explain our disease.  I make notes and keep them in a file on my computer.  I am also interested to find that few doctors care to think about these common characteristics, nor do they seem care about searching for answers.  I am thankful that the researchers who care about those of us who suffer from FFA do care and are also collecting this data.

I have had a history of allergies.  I have many drug intolerances and allergies.  I was on Nexium for way too many years for acid reflux.  I was also on a heart arrhythmia drug called flecainide when I first noticed significant hair loss.  I have Hashimoto's Thyroiditis.  My doctor suspects that I have a leaky gut syndrome since I am continually fighting low ferritin level and low iron saturation levels.  

I currently am only taking thyroid medicines, an allergy medication, and Vitamin B12 and Biotin.  I also use Clobetasol on as needed basis.  I use it when my scalp is red or inflamed.  I think the hair loss is slight these days.  I was recently prescribed Avodart by a respected dermatologist.  I could not even believe that he prescribed this medication for FFA.  I refused to take it.  I am trying healthy eating, stress relief by doing restorative yoga, and I am trying not to get too down about the loss of my hair.  

Comment by Celia on February 27, 2014 at 4:49pm

Hi Liz - sorry you can't make it this time - we shall hopefully get together again in the summer. x

Comment by Liz on February 27, 2014 at 4:21pm

Hi Celia :o)

I have to work on the 22nd. I work every Saturday at the moment. Have a lovely time. It would be lovely to meet you all one day. Debs. I've had a lifetime of gastrointestinal problems starting from when I was a small child. My mum is the same. Jules, I still have the hair which grew back on my right temple. Unfortunately I seem to have lost more on my left temple though. I've knitted myself a headband using soft bamboo wool which covers my hair loss. It's such lovely soft wool that my head doesn't feel hot or irritated even after wearing it all day. I shall knit more! xx

Comment by KarenGinny - Iowa, US on February 27, 2014 at 11:18am

MJ,  I live in the US in Iowa and would love to go to a conference like that, but don't think I could afford it right now. Even if I could make the 8-10 hour drive, the hotel and conference fee would cost a lot.  You could maybe go to the carfintl.org website and see if there is a way to send a message with your questions.   I am currently seeing a new dermatologist and taking Methotrexate to help calm down my itchy dry scalp. It might be helping but too soon to really know. My hair loss right now seems to be stopped - has been for a while now, but still have the irritated itchy extremely dry scalp and no new hair growth. I just do my best to cover up the bald areas.   On the topic of c-sections, I was not born c-section, but my two sons were. I've read about leaky-gut syndrome and how it can affect children/adults with autism. I have a 14 yr old son who has autism, but he doesn't really have any digestive issues, other than being a very picky eater. I also have a 12 yr old son who is neuro-typical.   Sometimes I wonder if my auto-immune issues have anything to do with his autism, but don't think I'll ever be able to answer that question?? 

Comment by Paula uk on February 27, 2014 at 11:14am

Hi All,
No,I was not born by C-section nor have I taken a lot of antibiotics in childhood or as an adult. I have taken more medication in the last 18 months than I had up to the age of 48 !
P x

Comment by Rita - Canada on February 27, 2014 at 10:09am

I too, have not been born by C section nor have had any digestive issues to date.

Comment by MJ on February 27, 2014 at 9:25am

I would like to find out if any one is attending the CARF conference. I wonder if there is a way to submit questions even if we are not attending.

Comment by Debs on February 27, 2014 at 7:36am

Hi ladies thank you for answering my question.

I was also given antiobiotics as an infant for pneomonia so this would gave added to the problem and I have read about leaky gut. Clearly when we take part in research the derms need to go back to our infancy to get the whole picture.

Comment by Celia on February 27, 2014 at 7:30am

I would probably endorse the anti-biotic theory. Oddly enough, some of us have been prescribed these in the cocktail of drugs we are taking. I am beginning to wonder whether the 'cocktail' probably exacerbates the condition, although I understand some of us feel the condition is better since being on the drugs.  The question which the derms cannot answer, of course, is whether the drugs have helped or whether the condition would have improved anyway.  What a conundrum ! x

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