Back To The Hair Loss Doctor

Back To The Hair Loss Doctor
November 23rd, 2010

hair loss doctorI just went back to the hair loss doctor for another follow up. I’ve been taking Spironolactone for a month now, and so far so good. I haven’t seen any crazy shedding from it, which is what I was worried about. But I am on a super low dose. I took 12.5mg of it each day for 3 weeks and then went up to 25mg a day. The first few days I started the medication I felt woozy and had a headache, but I switched to taking the pill at night and then I was fine.

Spironolactone
My goal at this doctor visit was to get a dosage increase of the Spironolactone. Last month the Dermatologist said there’s no way she would increase my dose past 25mg, which is really low. I was searching for dosing suggestions on reputable medical websites and couldn’t find any reference to what the proper Spiro dose is for female hair loss. Most internet sites will tell you it’s 100-200mg a day to achieve results, but I wanted to see what medical journals or WebMD, etc. had to say. I couldn’t find anything.

Doctors absolutely hate it when you find something on the internet to reference, and most of them will only accept information from medical journals, WebMD, MedicineNet, or official associations for their field – like aad.org (for Dermatology), etc. I was desperate so I told the doctor “I had read on the internet” that the minimum dose for Spironolactone to decrease and stabilize hair loss is 100mg. She of course said “well I went to medical school, so I have to disagree.” Normally I try to leave out the internet all together, but I had no choice. Somehow she was willing to increase my dose to 50mg a day, but now she hates me, and I’m one of “those” patients…

Another trick I just discovered is that doctors can’t remember what they told you at your last visit. They see lots of patients every day and have no idea what they told you a month ago. They only know what they wrote in their notes, and apparently they don’t always take notes, or read them. Somehow the doctor got the impression that she prescribed me 25mg of Spiro last month, not 12.5mg. My mom always accuses me of putting words in her mouth, which I don’t normally do, unless I have to… Anyway, with all of that drama, I hope I don’t experience side effects from the 50mg of Spiro. I promised the doctor I would tell her if I do have side effects, and I will keep my word on that.

• Well I went to Medical School…
When you go to med school you don’t learn a lot about hair loss. While the doctor has spent the last 10 years in school, I’ve spent the same amount of time learning about only a few things - like hair loss. I am sure a background in medicine would help my understanding of it, but I honestly don’t think most doctors know more about hair loss than me, or than most of the men and women that experience it first-hand and do their own research. I was thinking of becoming a Physician Assistant, which is only a two year graduate degree. At the Dermatology office I go to, they employ several PAs who treat patients just like the doctors do. So the only difference between me and the person you may see at your Dermatology office is two more years of school! When you get your PA degree, you don’t specialize in one area, so you wouldn’t even be learning anything about hair loss – I imagine that would come with clinicals or on-the-job training. I am not trying to bash doctors here – they are extremely important – but I am just so frustrated with almost every doctor I’ve ever seen. For example, when I had bad acne as an adult, I went to several doctors, and none of them fixed my acne. How did I finally fix it? – with research on the internet!

• Prednisone to help genetic hair loss?
Here’s one I hadn’t heard before. The doctor just gave me a prescription for the steroid Prednisone. It’s to calm the inflammation in my scalp (which I still can’t see). I absolutely agree that scalp inflammation is not good and it could make hair loss worse, but I was sort of shocked because one of the main side effects of Prednisone is hair loss! I am deathly afraid of the drug because my mom’s health problems spiraled out of control once she started taking it. I know this is probably a coincidence, but I always thought her hair loss was a partial result of her Prednisone use. The steroid has a host of awful side effects, and I really feel like it’s a bad idea to take it in this situation, even though the dose I was prescribed is really low. My gut tells me to stay away from it! If I had bad inflammation, then maybe I would consider it, but I don’t. This reminds me of when the gyno prescribed Premarin for an issue I was having, and it just made me gain weight. Later I found out how horrible Premarin is, and that it made my problem worse, not better! I try to keep the inflammation my body low by eating well, taking antioxidants, being gentle to my scalp, etc. I asked the doctor why I have scalp inflammation and she said she has no idea.

• Genetic testing for hair loss
Finally I asked the doctor if she though genetic testing to determine Androgenetic Alopecia would provide accurate results. I am really considering getting that HairDX test done. She said she has no idea. Great.

Another day, another dollar. It turns out my health insurance has not been covering any of the hair loss doctor visits or blood work because it’s just a “cosmetic issue!” Like hell it is…!
ps. I wish I could wear cute wigs like the one in the picture every day – maybe match my hair color to my nail polish.

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Related posts:

  1. Another Dermatologist Visit For Hair Loss
  2. Spironolactone – Here We Go!
  3. Is Genetics The Cause Of Your Hair Loss?
  4. New York Hair Loss
Tags: Categories: Dermatologists & Doctors

15 ResponsesLeave a comment
  • Rachel
    November 23, 2010 at 11:52 pm
    Reply

    Completely agree – I have yet to meet a derm (or any physician for that matter) that truly knew how to help – unless it was an obvious infection of some sort. No physical manifestations, no help.

    I’m sure you’ve checked this out already, but could your hair loss be due to a fungal overgrowth in your body? Obviously, you don’t have a fungal infection on your scalp (otherwise you would hope they would catch that), but I’ve heard that fungal overgrowth causes hair loss and is, of course, hard to dx (treatment is easy, dx-ing is hard)

    • Jeni - Hair Loss Hell
      November 24, 2010 at 5:01 am
      Reply

      I have thought about Candida, because I know that cause a bunch of problems, but I don’t really have many symptoms of that, other than allergies. As far as other fungal infections go – I just looked on google to see what I could find because it’s been a few years since I’ve looked into it. I don’t really have many of the risk factors – I rarely take antibiotics, don’t take steroids or have a compromised immune system, have Diabetes, etc. I haven’t ruled out Candida, etc. but it’s low on my list of possible causes for my own hair loss since I don’t have many of the symptoms.

  • B.
    November 25, 2010 at 4:36 pm
    Reply

    Ok, I am very curious about this. If you can’t see the inflammation, how does your derm know it’s there? I mentioned to you that my scalp has been very sensitive since my TE ended. I just went to a new dermatologist and he told me my scalp looks healthy and that he couldn’t see inflammation so he wasn’t going to prescribe anything. I told him that didn’t help my scalp pain and his response was “I’m not going to treat something I can’t see.” Can you tell me how your derm diagnosed you with inflammation?

    As for prednisone, I was on a forum board and there was a girl on there who had used prednisone for several months and it did induce TE. However, everyone is different. What induces TE for you or me may not for someone else. You could use it and it might help.

    I have to say that personally I am very wary of steroids of any kind at this point. I was on topical Clobetasol for two weeks to help with scalp flaking and it wasn’t until after I used the steroid that my scalp became so sensitive (it also seems to be the most sensitive on the top of my head, where I applied the most steroid). Howver, I’ve been off the steroid for a month and my scalp only recently started to get super sore.

    • Jeni - Hair Loss Hell
      November 27, 2010 at 9:09 pm
      Reply

      B.,
      When I look in the mirror my scalp looks fine to me, but apparently under the bad fluorescent lighting at the doctor’s office, the doctor seems to be able to see it. I know green-colored lighting (like fluorescent lighting) can bring out redness. The doctor barely even looks at my scalp so I have no idea how she sees anything at all. Maybe she’s looked at enough people’s heads to be able to discern a healthy scalp from an inflamed one.

      I know having TE can make your scalp feel painful, so maybe it will just resolve on its own. And I know anxiety can cause it – I’m not sure if you have that or not.

      I am very wary of steroids so I don’t want to take them unless I have to. If I really thought they’d help I’d try them, but I’ve learned my lesson several times over by taking stuff doctors recommend only to be worse off in the end. Now I just trust my intuition, which tells me not to take the Prednisone.

  • B.
    November 29, 2010 at 7:12 am
    Reply

    Jeni,

    I was thinking about it over the weekend, and I would also suggest you NOT take the prednisone. I did some research, and hair loss is a very common side effect. I think you’re most definitely right to trust your intuition on this one! I am going to yet another derm for a second opinion on whether or not I have scalp inflammation. Your guess was correct — anxiety was causing some of it! I was experiencing a burning sensation and when I went online I read that scalp burning/tingling is a symptom of anxiety. I have had panic disorder for a very long time and the symptoms of anxiety have manifested themselves differently over time. I started taking my anti-anxiety medicine more regularaly and the burning stopped. However, my scalp is still very sensitive, especially to products. I’m stuck using baby shampoo at the moment. It’s the only thing that seems to not make my scalp mad. Even jojoba oil made my scalp turn bright red, and I have used it many times before with no problems. I have also heard that TE does make your scalp sensitive and can cause inflammation so hopefully it does resolve on its own. Is your scalp ever sensitive due to your inflammation?

    • Jeni - Hair Loss Hell
      December 1, 2010 at 9:53 am
      Reply

      I have anxiety too and it manifests itself in different ways all the time – dizziness, metallic taste in my mouth, racing heart, tinglng/painful scalp once, etc. And of course the anxiety makes me more anxious, and it’s probably contributing to my hair loss. I’ve never had a sensitive scalp before, except for once for about a week, but I think that was from anxiety. However, A few weeks ago I dyed my hair, and that made it slightly itchy and sore for a week, even though I’ve been dyeing my hair for 15 years without a problem. I think since I have less hair now, more of the dye got on my head, and that’s what caused the problem.

      I wonder if you’re allergic to something in a lot of the hair products you’ve used? Maybe you are allergic to jojoba oil too? Otherwise I don’t know why it would make your scalp turn red. I wish I had a better answer. This new shampoo that my Dermatologist gave me – Free and Clear Shampoo doesn’t have fragrance or a lot of things in it, so it’s good for sensitive scalps and it gets a lot of good reviews. You can get it on Amazon.com.

  • B.
    December 2, 2010 at 12:41 pm
    Reply

    I have previously used Jojoba oil with no problems, and it’s supposed to be an anti-inflammatory agent. It’s normally very soothing to my scalp. The reaction to the oil occurred only after I used the steroid. Between the inactive ingredients in the topical steroid, all the medicated shampoos I have used (like Nizoral and TGel) and the TE, I think my scalp is just pissed off at me. It’s not my entire scalp, just certain patches. Everything I am experiencing points to follicle inflammation, and I can see pinkness in certain areas where it feels sore. I’m hoping it’s nothing serious or permanent and that my derm can give me something to fix the issue.

  • B.
    December 2, 2010 at 12:51 pm
    Reply

    I also wanted to share a story with you. I work with a girl who is 27. On her first day I noticed she had very thin hair and areas of scalp showing. After I got to know her, I shared my TE experience with her. She then confessed that her hair has been thinning for six years, that her grandmother is bald and has to wear a wig and that her mom is also almost bald. This girl is blonde and pale so her scalp and hair blend together but if she had dark hair I have no doubt she would need to be in wigs already. I asked her how she copes because I know my issues with TE have been a cause of extreme anxiety. She told me she doesn’t care! She says she has accepted that her hair is falling out and that she will have to wear a wig someday. She hasn’t been to the doctor about it, doesn’t try any medications to stop it, etc. She sheds a lot of hair, I have found it all over her chair, her sweaters, etc. and it doesn’t phase her in the slightest. Sometimes she’ll play with her hair in front of me and pull strands of it at a time out of her head, and it doesn’t phase her in the slightest. She’s definitely been a bit of an inspiration to me. I have realized that even if my hair never grows back or if I do end up having a more permanent kind of hair loss, I will be OK. Life will go on. It doesn’t mean I’m going to stop trying things to help my hair grow back, but I’m trying to not let my hair loss and scalp pain consume my life as much anymore. And, more importantly, it lets me know we’re not alone in our hair loss struggles! I think it’s more common than anyone realizes.

    • Jeni - Hair Loss Hell
      December 2, 2010 at 10:38 pm
      Reply

      I wish I could not care about my hair loss! I know there are tons of women out there who just don’t care about their appearance, but I’m not one of them. I am glad you are learning to accept your hair. I have recently started to accept my hair loss, but it’s been going on for 8-9 years and it took me this long to begin to accept it!

  • Sher
    January 2, 2011 at 4:12 am
    Reply

    I am STRONGLY suggesting that you do not take Prednisone. It is one of the popular treatment for people with Neuromyelitis optica (variant of MS) . Within a few months my sister who was a skeleton (she was dying) gained sooo much weight. She went from approx 80lbs to 140 lbs. That’s not the bad part because she lived. But her features totally changed, especially her cheeks become so pudgy like a chipmunk, which is a classic side effect of the drug. It also carries MANY long term side effects.

    Bottom line: Take this drug only if you have to. If the benefits out-weigh the side effects. In my sister’s case she was dying and it helped save her life. Yet despite it’s help she is being weaned off of it. Also note: Do not stop taking it suddenly. It needs to be weaned off of.

    My endocrinologist put me Spiranolactone because of symptoms of my high aldosterone levels … thick beard and moustache, and male pattern balding. I took half the dose to start in the early morning and it knocked me out to sleep. Four to five hours after I had to go to classes but I couldn’t keep my eyes open, not even in the shower. On the subway a lady must have realize I was in distress and offered me her seat. By the time I reached to school, which is about 15 minutes from home, I passed out in the cafeteria. I informed the endocrinologist about it and stopped taking the drug. Three months I saw again, I asked for something to treat this situation. You will not believe what she did! Luckily I research all my meds. The “new” medication was still Spiranolactone under a different name. I guess the doctors don’t give a damn about patients as long as they get their money. I don’t believe it is a bad drug, but maybe because I am known to have fast reactions to medications, plus the high dose she gave me, may account for my experience.

    I don’t know … I want to try it again but at a much lower dose, or something else that works because my skin is annoyingly super sensitive and I have resorted to shaving since nothing else works to remove the facial hair ( depilatories and lasers leave me with such bad burns each time I was afraid that the skin won’t regain colour), and I have no idea what to do keep the hair on my head !

    Let me know what you’ve found to help.

  • Elisa
    January 17, 2011 at 12:54 pm
    Reply

    Hi Jeni,
    I feel your pain. I’ve been dealing with my hair falling off, on and off, for years. Couldn’t tell you the reason, maybe is part of an autoimmune disease I have.
    But I can tell you that I’ve been taking Prednisone for more than 10 years now, and while I’m not proud of it, it has helped me in many ways. People will react differently to it, so don’t compare yourself to anybody else, because you might not get the same reactions and side effects. And I don’t know if Prednisone has made my hair worse, because in the 10 years of usage I’ve had good hair and I’ve had bad hair days (months/years).
    To gain weight you need to take a pretty good dosage, so anything low (maybe less than 5mgs per day) for a short period of time shouldn’t hurt. But then again I know a girl that couldn’t even take 2mgs without feeling horrible from it. So it really depends. At the worst of my time, I had to take 30mgs per day and that did make me gain about 30lbs, which was horrible. But what’s more horrible is that it’s not regular weight gain, you just blow up from a lot of water retention and it doesn’t look pretty.
    At the worst hair loss time of all, I tried Rogaine for Women, and surprisingly so, it helped me a lot! I’m not sure it would work for you or if you’ve tried it already.
    Good luck, and keep us posted.
    Elisa

  • Val
    December 22, 2011 at 1:03 pm
    Reply

    Hi Jeni – I know that you stopped taking spironolactone. My question is — when you were taking it, did you take the generic or the brand name Aldactone. I’ve read conflicting info online that the brand name may work better than the generic.

    thanks!

    V.

    • Jeni - Hair Loss Hell
      December 23, 2011 at 12:24 am
      Reply

      I took the generic version of it. The weird thing is while I was on it, they changed the size and shape of the pill a few times, but the pharmacy claimed it was always the same exact ingredients. With generics, they are the same as the brand name, but the inactive ingredients can vary slightly, so I guess there’s a very slight chance those ingredients can change the way the medication works. When I was on generic thyroid medication, the pills changed and the new version stopped working for me (and everyone on it). It was crazy.

  • Val
    December 27, 2011 at 6:27 pm
    Reply

    Thank you your reponse and thank you for creating such an amazing informational blog! I discovered your blog not too long ago and I come here occassionally whenever I’m feeling stressed over “bad” hair days.

    Happy holidays!

  • Jenn
    December 29, 2011 at 7:08 pm
    Reply

    Jeni-
    Hey..I’ve spent the last two days reading your site. Let me say..THANK YOU! This is my first post ever about my hair loss issue. We have 2 things in common..hair loss and Vegas. I have found a doc willing to give me the spiro but I’m so torn as what to do. All the stories are 50/50. It’s hard for them to get a blood pressure reading on me with the cuff sometimes..so should I risk it and all the scary side effects? I spend countless hours agonizing. And I still truly don’t know why my hair is falling out. Have you seen an endocrinoligist here in the valley? Also, may I please have the name of the hair restoration place you went to in LA. Seems like you had your best results there, correct? Any advice and tips to guide me I’d gretly appreciate..I need help where to begin. I read so much that I’m more confused. Ohh..and the insurance thing. I pray that they don’t cut me off too.
    Oh..and by what you say seems like I should stay away from Serge’s?? Have you looked into wig shops in LA?
    Thank you..
    Jenn

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