Struggling for 1 year and no diagnosis

Discussion in 'Hair Loss Causes' started by Losingit22, Oct 20, 2013.

  1. Losingit22

    Losingit22 New Member


    I've been gradually losing my hair for a year now. I've had my thyroid, iron, hormones, B12, D, and zinc tested. I went to a dermatologist who looked at my scalp and said "try Rogaine". I've gone to a naturopath and tried several different supplements. I am vegetarian, mostly vegan, and I use protein powder and vitamins to make sure I'm getting what I need. I am so frustrated and devastated. This is my first time on any kind of forum and am hopeful to find support and maybe some answers. I feel very alone right now and am grasping at straws. I welcome any ideas that may be out there.

    Thank you-
  2. khikhob

    khikhob Member

    Hi LosingIt,
    I am really sorry to hear what you are going through. My experience is very similar in that I have been losing hair - lots of it and quite dramatically - for about 8 months and although I'm afraid I can't offer you much advice I just thought I would respond to your post, particularly since you said you feel so alone. You're not! I have seen 2 dermatologists, neither of whom have been any help, really. The one I have stuck with suspects 'mild' seborrheic dermatitis so I have been using ketoconazole shampoo every day - which is traumatic enough in itself, seeing hair come out in clumps in the shower - and it has not calmed my scalp whatsoever. My ferritin was at 17 which is quite low. Overall, neither derm has really made a concrete diagnosis as to the cause. Both have been very vague, with the 'try Minoxidil' approach. Been using Minoxidil 5% for about 2 months and shedding is dramatically worse. Am I to assume your zinc, iron etc came back at 'normal' values? Have you been able to actually have your ferritin - as opposed to iron - tested. That's one of the first things to eliminate as a cause. If you are able to see an endocrinologist that is the next port of call. Unfortunately I can't get a referral to one as yet. Have you had your thyroid and all your hormone values tested? What about your general health? If you are fatigued or run down you may find that it is an adrenal/cortisol issue. Since you are vegetarian make sure you are getting as balanced and healthy a diet as possible. Obviously I'm not a doctor so can't really advise but these are just a few ideas you might consider in order to try to get to the source of the problem, since the medics seem to have left you - and me - high and dry. You are not alone. Do please let me know how you are getting on and if you get any answers from the 'professionals'? * Hugs *
    Kate x
  3. Losingit22

    Losingit22 New Member

    Hello Kate-

    Thank you so much for your message, it really brightened my day! I haven't been on much since my first post and had just said to my husband the day before you wrote that I wasn't sure if I was going to continue to check in. What are the odds? : ) Since I wrote in October I have tried another naturopath and several more supplements and dietary changes. I have actually been losing body hair as well. I started looking into permanent cosmetics for my eyebrows. I had started to come to terms with maybe having to wear a wig someday, but I can't tolerate not having my eyebrows and lashes!! Thankfully it has leveled off some, but I continue to see more and more of my scalp. I think my next move down the road will be Dermamatch.

    I have had all of my levels checked and am borderline in some areas . The frustrating part about lab work is the "normal" values have such a broad and lab-dependent range... I have done so much research and experimentation on my own - because as you said, the medical profession hasn't been much help. I will likely try Synthroid again although it seemed to accelerate my hair loss - but helped my eyelashes, nails, etc. I figure if I am losing my hair anyway, I can at least help the other areas.

    Are you taking iron supplements? 17 is really low for ferritin. Mine is 45 and I've read that between 50-100 is ideal for hair. I've been researching types of iron supplements to find the best absorption, quality, etc. I've also read that vitamin C is pretty much mandatory if you take iron. Have you checked your TSH/T3/T4 with your family doctor? They should be able to do that while you wait to see the endocrinologist. I haven't gone that route yet because my family doc has been pretty cool.

    Have you tried Bragg's apple cider vinegar rinses for your hair? Not that it impacts loss, per se, but I wonder if it could help the dermatitis? I refuse to put chemicals on my head and really don't like the idea of taking them orally either... but I think the more natural and toxin free we can be the better. I have also heard that coconut oil hair/scalp massage can be helpful. I use coconut oil for body lotion and deodorant and it's lovely! My naturopath said it is both antifungal and antimicrobial - so maybe that's worth a shot. I also eat a tablespoon a day for overall health. Plus, if you have any concerns about candida/yeast overgrowth in your body it can be helpful in that too.

    I've been using the Alopecia Cure treatment from India but haven't seen any results. Plus I sometimes get so tired of all the junk I do and apply only to see 0 results.. My target right now is to get my head and heart right about it and give the borderline hypothryroid treatment one more go.. I recently met a woman who walks the world as a bald woman and it was very empowering. There are so few images/role models for bald women - unless they are going through chemotherapy. I continue to journal - a lot- and try to recognize and value my worth as a person - not as my appearance. I am grateful and lucky to have a wonderful support system so I am not alone, but when you are the only one going through it, the experience itself feels lonely - because no one but us knows what it's really like and how all-encompassing it can be.

    So, all that to say - thank you again for your care and concern. It is a blessing to be able to receive support from strangers who are on the same challenging path. It gives me hope on a lot of levels.

    I would love to be kept in the loop on your journey and I will try to do the same.

    Take good care-