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Eggplant's updates [pics!]

Discussion in 'The Undiagnosed' started by eggplant, Jan 25, 2015.

  1. hoping4best

    hoping4best Established Member

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    Eggplant, have you tried Dr. Diane Hoss in CT? She's Google-able. Feel free to PM me if you have questions about her.
     
  2. mycurlyhair

    mycurlyhair Experienced Member

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    Lynne Goldberg and Dr John Harris are both good and in Boston. I saw Dr Harris. He took his time with me. They are both hair specialist Derms. I have scarring alopecia. Thankful on the mild side!
     
  3. dvent1111

    dvent1111 Established Member

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    I also saw Dr Lynne Goldberg- she has Androgenetic Alopecia herself so it was nice for someone with it to look at my scalp. It took me 6 months to get my first appt.
     
  4. eggplant

    eggplant Established Member

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    Thank you all for the recs! I'll start looking into them.
     
  5. LosingHope

    LosingHope New Member

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    Any updates?

    Just wondering how you made out? I'm in the same boat and they say Androgenetic Alopecia from biopsy and I too recently upped my Spironolactone to 150 and back of BCP (which started this whole thing) and now I'm questioning it all.

    Do you ever wonder if the Spironolactone is to blame? I'm starting to wonder if it really works different for different people.
     
  6. Carni

    Carni New Member

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    Any update

    @eggplant any update?? :(
     
  7. eggplant

    eggplant Established Member

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    Oops sorry for being away from the boards these days.

    Latest update is well ... it just keeps getting worse. I've been using the minoxidil since June and it seems like it's accelerated and I don't see anything that looks like regrowth. (Although I should note that I kinda suck at using it -- I was doing 2.5% twice daily originally but I was getting really bad headaches and dizziness so I switched to 5% once daily when technically it should be twice daily.)

    I've also changed my bcp to yaz because the drospirenone is supposed to be more hair friendly. I don't know if that change could actually be making it worse though because it's also a lower estrogen pill than what I had before and I don't know if that could be messing something up. So who knows. But I'm not hopeful. I'm really upset that the minoxidil hasn't shown ANY sort of positive results.
     
  8. hairtothere

    hairtothere Established Member

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    Eggplant, I thought that the 5% was only supposed to be used once a day, did your derm advise differently? It seems everyone has a different application method. I'm struggling with wether to add minoxidil., I get migraines and when I've tried minoxidil I get heart palps and a nasty headache and I've not just toughed it out and stuck with it. I also just recovered from my TE I don't want to do anything to kick another one off, but my derm said since I am in my 40's I should use it to maintain my hair against age related loss. He thinks everyone over 40 interested in their hair should use it. He also told me there is no such thing as a Rogain "dread shed" (hahhahahaha) So confusing!
     
  9. JenVoy

    JenVoy Established Member

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    There's no such thing as dread shed from rogaine? Is he serious? Tell him to talk to Dr. Donovan. I don't agree with everything that man says but at least he knows it causes an increase in shedding.
     
  10. eggplant

    eggplant Established Member

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    Just an update that I have an appointment with Dr Goldberg in Boston in August. I guess my derm has sent some difficult cases to her. I'm not hopeful at this point but I'd be curious to hear from anyone who has been to her whether she basically just diagnoses you and sends you on your way or whether she will prescribe meds and continue to follow up (maybe PM me).

    ETA: things still worsening. It's actually gotten REALLY bad this past month. :pirate:
     
  11. dvent1111

    dvent1111 Established Member

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    Eggplant- I saw her a year into my TE and then 6 months after that for a follow up. She said she wouldn't do a biopsy at the first appt but if I wanted to at the second she would. The appt started with an med student who evaluated my hair told me his thoughts, then she came in and looked at my head. She was VERY focused on the parts and how they look all over the head. She looked at my sides vs middle and back vs middle, said it looked like TE to her since all the parts look the same. Apparently she has Androgenetic Alopecia so I was little comforted by the fact that she knows what Androgenetic Alopecia looks like first hand. (although you would never guess she has it as she uses Rogaine and her hair looks great!) My shed lessened quite a bit by the second visit so she so no biopsy and to wait it out saying it looks like it got better. I haven't gone back again, that was over a year ago.

    I do know now my shed which started from going off bcp and then all the others TE's were changing in thryoid meds (like clock work- 2 months after the change I shed for months) but I do wonder if my TE triggered Androgenetic Alopecia so I will probably be going back to her in the next year.

    Eggplant are you in Boston? I have heard great things about Dr Hoss in CT... tempted to try her too! Any questions let me know!
     
  12. hoping4best

    hoping4best Established Member

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    I've seen Dr Hoss twice now. I like her, but she has little faith in much other than minoxidil for Androgenetic Alopecia, so there aren't many other options, especially for me since I have low androgens.

    I went to her in January and based on pictures my hair was definitely improved 6 months into minoxidil. But then I had a massive change in my HRT in January-February, and my hair has been shedding horribly for the last couple months (100-300/day, awful). I have a pink shiny part again, have lost lots in my bangs area, and feel so bummed. I called her and she was willing to call in some 2% nizoral for me to try even though she hasn't seen many helped by it. She and my endocrinologist both told me to expect a TE after my HRT change and that I would just have to get through it, but then I should recover a bunch (I still have Androgenetic Alopecia, but it's manageable when I'm not in a TE as well, I get a TE any time I adjust hormone doses).

    She did want me to try particularly low androgen birth control pills, but my endocrinologist didn't think they were a good match for me, and I agreed.

    So I think she has a great deal of expertise, but is limited in what she's got in her toolbox to help. She doesn't really do biopsies because she has found them not useful. So if that doesn't sound helpful, maybe don't make the trip, or call to talk with her before you do (she answers her phone and is very personable and responsive).

    I'm scheduled to see her again in the fall.
     
  13. eggplant

    eggplant Established Member

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    Just wanted to give an update: I had my appointment with Dr Goldberg. It was okay. She wasn't willing to go with more aggressive treatments right away (which I can respect) but said she wanted to monitor me, and to come back in six months. So no guarantees she'll actually, you know, do anything, but at least there's hope.
     
  14. Sunnyday

    Sunnyday Member

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    Did she at least diagnosed you?
     
  15. eggplant

    eggplant Established Member

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    It's weird. Looking back, she actually technically didn't. She was kinda suspicious at first because my old biopsy results said TE but when I explained that I had doubts about that because it had been taken from a part of my head that wasn't affected at the time she agreed that could be why it said TE. So I guess she kinda agrees it is Androgenetic Alopecia?
     
  16. Sunnyday

    Sunnyday Member

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    i think so..
    i think they are happy when we don't insist to get a "diagnosis" because they are never sure of what to tell and never sure of their diagnosis :( it's frustrating
    Good luck eggplant, hope things get better for us all
     
  17. mellie

    mellie Established Member

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    I saw her a year ago and was totally disappointed by her. She didn't seem to care. She confirmed Androgenetic Alopecia for me and only wanted to see me again in a year because I had just started Rogaine. And she was very quick at saying the next best option is wearing a topper (which I wasn't ready to hear, nor was it relevant at the time).

    Eggplant - did she comment on your treatment at all?
     

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