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Need Some Advice On My Hair Loss Journey Please!

Discussion in 'Women's General Hair Loss Discussions' started by gracek21, Oct 3, 2020.

  1. gracek21

    gracek21 New Member

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    So I’m 21 and my hair has been thinning for about 3 years now. I have Lupus and PCOS. I finally had enough of it since my hairline is awful now and I have about half the hair I used to. I started Rogain 5% once a day three months ago. Two months ago I went to the derm who told me to go up to twice a day, which I’ve done. He’s also started me on 50mg Spironolactone which we will work up to hopefully 200mg since I have heart problems and had to start on a low dose. He also tested my Ferritin which was a 7 so I’m on iron as well.
    So it’s been two months since that visit and I’ve been doing everything religiously aaaaand I’ve seen no results. In fact my hairline even looks a bit worse. I know it all takes time but I’m very stressed. I’m a senior nursing student and hopefully getting engaged soon and would really love my hair back hahahaha! Does anyone have any advice or encourage of any kind!? Thanks!
     
  2. MommaBear79

    MommaBear79 New Member

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    As someone who has been battling hairloss since my teens, my advice is to stick with your current regimen. Both of the medications you’re on work, but it does take time. The reason your hair looks worse now is because with rogaine, you shed first and then start to see new growth 3-4 months later. Until your hair starts to improve, try topikk. I use it everyday and it makes a big difference in how your hair looks and it’s undetectable, if applied correctly. I don’t put it directly on my part. I make a part directly to the left and right of where I part my hair, shake the topic to cover those parts, and then part it in the middle of the two. This makes my part look smaller, but I still have a part. In the back, I shake the toppik right over the thinning areas, lifting sections of hair as needed to cover then. The other cosmetic thing I can suggest is color your roots. The hair that grows initially is colorless. If you color it, then you can see it and it gives your hair more density. Hope this helps! Good luck!
     
  3. MommaBear79

    MommaBear79 New Member

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    Oh and one more thing, it takes 1-2 years to see significant improvement. It’s a long time but it’s worth it. Try not to get discouraged. I am in my 40s now and still have a significant amount of hair. With the cosmetic tricks I’ve learned along the way, most people don’t suspect that I have hairloss. If I didn’t stick with rogaine, I would probably be wearing a wig by now, like my grandmother, who I inherited my hairloss from. Also for your wedding, make sure you get someone who can work with clip in extensions! They’re your best friend :)
     
  4. alomom

    alomom Member

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    Please take it from a mother whose daughter lost her hair while attending college. You can always have hope that your hair will start to grow again and it certainly might. Alopecia is a big guessing game. We took our daughter to all the specialists, even the Mayo Clinic to be sure it was nothing else that was causing the hair loss. Then we took all the treatments, shots, gels, Rogain etc. Unfortunately, her hair did not grow back. She too was 21 years old at the time.My heart was broken, but my daughters took it like a champ. This is why she took it so well, she had the support of all those that loved her and my desire to find her the best human hair wigs possible. This learning about wigs took me to China so that I may understand everything I could about wigs. I needed to understand what type of hair is the best, which caps worked best for those with alopecia. It all worked and we transitioned to wigs when her hair got too thin. She lost all of her hair in 4 months. By that time we had found a great wig that looked like the hair she lost and off she went back to college after xmas break. There is so much more to write and I am a NAAF phone support person so it would be great to speak with you if you so desire. A wig or a topper is not a bad thing. It gives you time to adjust to what is going on and does provide confidence so that you can live your life to the fullest. Our daughter graduated college, started her career and found a wonderful husband. Many people are very comfortable not wearing wigs and that is what suits them. My daughter did not want to go without hair and we were there to support her. Please let me know if you need any guidance or support, that is what this website is here for as well as the National Alopecia Areata Foundation of which again I am a phone support person. My email address is Lisa2157@gmail.com
    I wish you the best in all that you do, Hugs
     
    Lisad likes this.
  5. gracek21

    gracek21 New Member

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    alomom:
    Wow that is so inspirational to hear about your daughters attitude! Crazy that it all went so fast for her. I hope I don’t have to wear hair but if I do I hope I have her same outlook.
    MommaBead:
    Thank you so much for your reply and insight! I know it’s early on and I will for sure keep plugging away. It’s hard right now I feel like every day is worse. Really just in the hairline. It’s like all of my long hair has fallen out and I’m left with hair that’s about 2-4 inches long. Very strange. And my fear is that those hairs will fall out too and then I’ll be COMPLETELY bald in my hairline. It’s just discouraging the rate at which my hair is getting worse, before this it had always been a very slow progression. I also I’m so so stressed about my friend’s wedding. I’m a bridesmaid and we are all having our hair done by a professional in a low bun... I’m worried because I have to do my hair in specific ways to make it not look awful hahaha.
    Sorry, just a lot of stress about this situation right now. Thank you!!!
     
  6. Delaine

    Delaine New Member

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    Gracek21:

    So sorry to hear you are struggling. I too have hair loss and an autoimmune disease. I have Sjogren's Syndrome which can share SSA and SSB antibodies with Lupus. Has your dermatologist discussed the connection between your Lupus symptoms and your hair loss? Is your Lupus being treated? I feel my Sjogren's has complicated my treatment.

    I started using Rogaine 5 % foam at the beginning of July. I applied it to a very small area in my temple area for 6 weeks because of my skin sensitivities. I had no reaction and I could see new hair growth so slowly increased the amount across my hairline and up into my bangs and a small area of my crown. I use less than half the recommended dose. After I increased the area treated I started to get the sensations in my face which means I have triggered a flare. I am guessing now these sensations must be vascular although no one has been able to tell me if it is nerve related or vascular. I hate to give up the Rogaine because I see new hair growth along the hairline. The problem is my face has now become flushed and I have developed symptoms similar to Rosacea along with the tight burning feeling in my face. I have also developed some changes in my skin. The pores have enlarged and my skin has developed some small bumps beside my nose and on my cheeks. Again symptoms similar to Rosacea. I am so disappointed because I could see improvement in my hairline. I am guessing because Rogaine is a vasodilator that it has aggravated my Rosacea type symptoms.

    We only have one dermatologist in a very large area so getting in to see her is impossible. We have a couple of family Doctors that are now specializing in dermatology so I have been referred to one. Even then I have to wait until December to get to see her.

    I do understand what you are going through and I am wondering if your autoimmune disease has complicated your hair loss recovery.
     
  7. gracek21

    gracek21 New Member

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    Thank you for your reply Delaine!
    Well my dermatologist said my hair loss was alopecia areata and that maybe my low ferritin level was also causing it. I’m in a very very bad place right now. I can’t even look in the mirror. My hair has gotten so so bad that my hairline sucks and all the hairs toward the front of my head are only like two inches long for some reason, all the long hairs just disappeared. I’m just about to the three month mark on Rogaine and spironolactone 100mg. I know it takes long to see results I just have become very depressed and lost about all hope.
     
  8. gracek21

    gracek21 New Member

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    If anyone has any advice, my hairline is continuing to become shorter and thinner. I’m loosing hope by the day. Up to 200mg a day of spironolactone.
     
  9. Delaine

    Delaine New Member

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    My heart goes out to you. I can understand why you are upset. I am no expert but I thought alopecia areata caused more patchy hair loss. What you are describing sounds more like what I am experiencing with normal hairs along the hairline being replaced with shorter baby hairs.

    How are they treating your Lupus? Are you on any medications? In my case stress aggravates my existing hair loss and the more hair loss the more stressed I get which causes more hair loss. It is a vicious cycle. I got so obsessed I would waste a good part of my day analyzing my hair. Seeing the changes in my body from my autoimmune disease makes me wonder if having Lupus is in any way causing your hair loss.
     
  10. gracek21

    gracek21 New Member

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    Currently I’m not on any medications for lupus as it’s in remission for the time being (yay!). I have also wandered if it’s not areata since it’s overall thinning and frontal thinning, but my derm told me it was alopecia areara. So who knows lol. It just seems to continue to get worse in the front. I have less hair fall but it looks worse somehow. My only hope is that there’s tiny hairs in the front so that means the hair follicle isn’t dead? This is so distressing for me and I too struggle with the vicious stress cycle. Managing stress is much easier said than done hahaha. Anyone think I still have a chance at my hair coming back?
     
  11. gracek21

    gracek21 New Member

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    Update: things are still getting worse ugh. I saw my derm again and he said keep going with the minoxidil and Spironolactone (on minoxidil almost 6 months and Spironolactone 50mg since august and up to 200mg in December). And I’m on iron for low ferritin. My hair is sooo thin and looks worse each day. I also sometimes experience a pulling right sensation on my scap. Has anyone had luck with minoxidil after 6 months? He it can take up to a year. I’m just loosing hope and my mental health is basically shattered as I’m just turning 22.
     
  12. thinhair1

    thinhair1 Member

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    Hi Grace,
    I just want to extend you a virtual hug. I went through what you're going through at age 30. I too, lost all hope. At that time I gave minoxidil a short try but got quickly discouraged and quit. I started with toppers and now wigs and really truly it gave me my life back. I know it can feel like a huge step but you might consider it.
    Now I have a teenage daughter and I'm pretty worried she'll have the same issue. My mom and grandma had really thin hair so I don't think my kids stand much of a chance.
    I am taking her to a naturopath tomorrow and then a derm in a few months.
    In reading up on androgenic alopecia I learned that not only should ferritin be on the higher side (around 70) but zinc levels should be adequate. Also I saw an impressive study with photos in a medical journal that showed good improvement in hair diameter with nizoral topical daily, and in hair density with minoxidil topical daily. It was studied on women in your age group. Also I have seen studies that show Biotin orally is generally helpful.
    So, I've started supplementing my daughter with zinc gummies daily, and started her on Nizoral shampoo once weekly OTC.
    I plan on switching her to nizoral (ketoconazole) 2% shampoo when I can get a prescription. I realize it's not the same as the topical nizoral cream that the study participants used on their scalp daily, but maybe I can get my daughter to use the shampoo three times per week, with leaving it on the scalp at least 5 minutes before rinsing out.
    https://pubmed.ncbi.nlm.nih.gov/28616431/

    I'll be starting her on Biotin, and will keep working on her ferritin levels.
    Also Omega 3 and 6 might be beneficial. Here's a study on that:
    https://pubmed.ncbi.nlm.nih.gov/25573272/

    I wish when I'd started noticing thinning hair I would have tried these things, and also kept on the minoxidil.
    And I wish I had embraced faux hair much sooner. I lost a lot of my life by not allowing myself to think of wearing hair.

    Keep updating us. We really do understand. There are options for you that will help you feel like yourself again. Take it from this skeptic.
    Hugs
     
  13. thinhair1

    thinhair1 Member

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  14. thinhair1

    thinhair1 Member

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    Grace, I just re-read your post and see you have alopecia areata, not androgenic alopecia. Sorry I missed that!
    I don't know if the therapies I've listed work for that type of hair loss, but maybe they do.
     
  15. gracek21

    gracek21 New Member

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    Thanks so much for the response and the tips! I kinda think it is androgenic alopecia. Just from the symptoms, high testosterone and receding hairline. I’m trying to trust the process and wait it out and keep going with minoxidil, iron, Spironolactone and biotin. Hard to keep going when I’ve seen literally zero results and I’ve been working really hard. Ugh. Not ready to try hair yet I’m afraid it will make me feel less like myself and fake if that makes any sense? I missed two days of minoxidil because I was on vacation. Oops. Hoping this isn’t going to cause a huge problem.
     
  16. thinhair1

    thinhair1 Member

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    Grace, are you using ketoconazole 2% shampoo three times weekly and leaving it on for 5 minutes before rinsing? If you're not, please consider
     
  17. gracek21

    gracek21 New Member

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    Thinhair1 I just started using Nizoral about a week ago. I’m so depressed. It’s worse everyday. I don’t want to quit treatments because idk what I’d do without hope and without hair. There’s a new topical mixture that my derm wants me to try so maybe I’ll do that. Is there still hope that these treatments are just taking a long time to work? It’s been 6 months.
     
  18. thinhair1

    thinhair1 Member

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    Grace, I haven't re-read this entire post so sorry if I'm repeating myself. I've been binge-reading this site for the past week. :)
    What does your derm say about your hair in followup visits. Does he/she look carefully at your hair with a scope for signs of re-growth? Does he/she take photos? How many followup visits have you had?

    Before you stop a treatment we want to know for sure that you have not responded. That means a skilled person with good light and a scope should be looking objectively at your hair and comparing it to the last time they saw you. They should be looking at diameter and number of hairs, I believe. I don't know for sure but I think they can take close up photos to document change in your hair. And they should have a program and a plan. Not that they should be able to totally predict your hair, but they should have tools in their box to try in a systematic way.
    And if they didn't already recommend Nizoral 2% shampoo, I'd ask what took them so long to do that. On the men's forum Nizoral is a no-brainer. I saw one post there that said "anyone concerned about hairloss should have a bottle of Nizoral in their shower". I'm not a dermatologist but I am a FP physician and I can't see any reason a derm wouldn't immediately start Nizoral. Anyhow, off that soapbox.

    I've seen studies that showed hair growth as good as minoxidil after 6 months of patients (including women) using ketoconazole (nizoral) cream on their heads every night. I think it was 2%. I never hear that being recommended on this board, so I'm curious why the derms are not recommending it.
    And why not add retinoic acid (Retin A) while we're at it? I know it would be a mess at night but we could buy some cloth chemo caps and just wear those every night. A small price to pay for hair.

    All this is to say that I'm not sure how many of us are getting the most uptodate derm care (well, I've given up on my hair but looking for my daughter's sake). I can say that as a physician sometimes we forget to keep it simple, and go back to basics. Consistency with shampoo and topicals that are proven in the literature, with good nutrition with plenty of protein and good ferritin levels and perhaps some Barleans fish oil swirls for Omega 3's may go a long way, if checked every 4 months or so for progress as I outlined above. And you're already on Spironolactone so that's great.
    I can't remember if you tried minoxidil or not but if not consider asking your derm for the test to see if you are likely to be a responder (hair sample). And the retinols/ketoconazole may help the minoxidil work better. Your derm should be familiar with these fairly recent studies and if they are not please fire them. These are compelling and important studies. Keto cream working AS WELL as minoxidil!!! OMG, without the side effects and chance of being a non-responder and the cost? Why are they not ALL recommending this to their Androgenetic Alopecia patients?

    Grace, do not despair. I felt exactly like you, and I am definitely not an optimistic person. And I got through it with the help of faux hair and I got married and had kids and I have a great life. And I STILL am not an optimistic person. So if I can do it, so can you. We're here for you. You can do this.
     
  19. thinhair1

    thinhair1 Member

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    Oops, sorry I see you're on rogaine. The 5%, that's great. Now think about some topicals to add synergy.
     
  20. thinhair1

    thinhair1 Member

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    Wow this study showing retinoids are important for hair growth is from the 80's!!
    Since my daughter uses retinA on her face for acne maybe she could just extend it up to her scalp! :)

    https://pubmed.ncbi.nlm.nih.gov/3063367/
     

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