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Dermatology appointment coming up (want to be prepared)

Discussion in 'The Undiagnosed' started by eggplant, Dec 12, 2014.

  1. eggplant

    eggplant Established Member

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    I have an appointment with a dermatologist next week. I actually originally made it because I needed a new derm for insurance reasons and wanted to be seen for a regular mole check and acne, but with the hair loss/thinning continuing I figured I'd push this towards the forefront of the appointment. I want to get a scalp biopsy and push for diagnosis/treatment. I've had hair loss since 2013 and it keeps getting worse. My endocrinologist was useless (well, she's been terrible for years and I need a new one anyway, but she said that congenital adrenal hyperplasia wasn't severe enough to be causing the hair loss so I *guess* it's not that....). Primary checked my iron and said it was low and to take iron and biotin (this was over the summer and so far no change in the progression). So I'm really hoping a dermatologist can help.

    Can anyone offer any ideas for how to prepare myself (questions to ask, etc)? What to expect for an initial appointment? I'm really getting nervous and stressed. I mean, on one hand I think it's a good thing to maybe get on a path to answers, but on the other I don't want my issue to be brushed off or any diagnosis/treatment delayed, plus I'm just really nervous about getting a bad diagnosis. I can't live with the stress of not knowing but at the same time I'm not emotionally equipped to deal with bad news. I have really low self esteem. (Sorry, this got sort of rambling, I'm just not coping well right now.)
     
  2. Blue Panda

    Blue Panda Established Member

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    You're right there with most of us on the self esteem thing. Mine is terrible as well.

    First of all, nothing you do will push a useless derm into doing anything, so if you do happen to get one (I did, he was awful, took one look at me, told me I was going bald from Androgenetic Alopecia, he could tell just by looking at me and refused to biopsy OR do anything to help. My 6 month follow up was no better so I gave up) definitely seek a 2nd opinion.

    My new derm is lovely. He is kind and caring, he said he suspected it was likely to be hereditary loss for me but needed to be sure so we could treat it properly. It did end up being Androgenetic Alopecia and despite having suspected that for years, it was still hard to hear. I think I'm dealing with it worse today (3 days later) than I did the day I got told. It's a process I guess.

    My first appt. he also explained the options of treatment I would have and I had the biopsy done. It was not nearly so bad as I had expected. I am a total baby when it comes to pain but the local didn't hurt at all (the tiniest pinch like someone touched my scalp with a pin head and nothing for the 2nd one). The actual biopsy sound was somewhat disconcerting. I could hear a slight crunch kind of a sound echo in my head as it was taken but there was no pain. I got one stitch for each 4mm biopsy hole and was sent home for a week. It did hurt a bit once the local wore off, but nothing unbearable or anything that made me too miserable. I did have a bit of an annoying headache for about 2 or 3 days afterward and wash your hair before you go in because you're not allowed to wet it for 48 hours after the biopsy.

    My follow up was Thursday where he confirmed the Androgenetic Alopecia and prescribed me Spironolactone, went through all the side effects, told me other options I have if it doesn't work or I can't tolerate it and answered all the questions I had about it and minoxodil and finasteride.

    Good luck, I hope yours is lovely and I hope you get some answers. I've been trying to get someone to listen to me for 10 years. That's a whole lot of hair loss I didn't need to suffer through if someone had listened when I first questioned it. Let us know how you go! And of course, know that you can come here for comfort, advice or just to talk whenever you need to :)
     
  3. eggplant

    eggplant Established Member

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    Thank you for sharing what the biopsy was like. I'm not too worried (I have an odd fascination with surgical procedures so they don't usually phase me) but it's good to be warned about that "crunchy" part.

    I'm really suspicious it's Androgenetic Alopecia because I already have an excess androgen causing condition (congenital adrenal hyperplasia) and have taken Spironolactone for 10+ years. I never had hair loss issues before but maybe my dose just needs to be increased (I take 50mg per day). But then again this seems to have come on sort of fast (probably started some time in 2013) and I feel like I've lost at least half my hair already. Does Androgenetic Alopecia work that quickly?
     
  4. Blue Panda

    Blue Panda Established Member

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    I'm honestly not sure I know it can have an early onset like mine did or it can happen later in life. I think the speed at which it happens varies person to person. Mine is relatively slow which I am thankful for given that no one did anything for me about it for more than 10 years. It could just be that you need to adjust the Spironolactone. My derm's starting dose is 50mg and can go as high as 200mg. If that doesn't help it might be that you're not responding to it and need to try something else. Of course it might not be Androgenetic Alopecia at all though :)
     
  5. eggplant

    eggplant Established Member

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    Thank you again Panda. I'm glad you've finally gotten some answers and a treatment. I hope the Spironolactone works for you. I see a lot of people on these boards worried about Spironolactone and it's side effects, but FWIW: based on my experience on a lower dose for over 10 years...I never had issues with it.

    I had my appointment today and overall I think it was positive. I saw a PA and he examined my scalp and ordered some more bloodwork. He said based on my previous iron and vitamin D levels I probably wasn't still getting enough even with my multivitamin and that I might need to take more iron and even do a round of the strong vitamin D treatment (the sort where they blast you with 50,000 IU once-ish a week for a few months). He said my scalp didn't look like I had a scarring version of alopecia and that he thinks mine is reversible. I'm not totally confident he's right about that given that I already have an excess androgen condition and I still think it could be Androgenetic Alopecia, but it's at least encouraging. But he also suggested that I might be experiencing a "perfect storm" of many factors: excess androgens + bad nutrition + recent stress. He agreed to perform a scalp biopsy but I had to reschedule for it at the end of March (I was told I could call to see if any cancellations occur though.) We talked a little about the Spironolactone because I want to increase it, and he thought it was a fine idea but to run it by my endo for a new rx. (I really need a new endo though because my current one is terrible and blew me off on the hair loss [and for other reasons that I think she's not very good]). He also said I could start trying minoxidil but I want to research that more first.
     
  6. eggplant

    eggplant Established Member

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    For anyone who might have any feedback (although I don't think there's a lot to conclude), these were my iron blood test results from my appointment:

    iron serum: 143 (normal)
    total iron binding capacity: 475 (HIGH)
    transferrin saturation: 30.1 (normal)
    transferrin: 339 (HIGH)

    ferritin: 15.2 (kinda crummy but it's up from the summer when it was 9.9!)

    From what I've read the high transferrin numbers could be the result of iron deficiency or BCP, so I think it's all a bit inconclusive. Still, any thoughts?
     
  7. Blue Panda

    Blue Panda Established Member

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    Sorry I don't really know much about blood work results other than the ferritin being 15.2 being low (but like you said, improvement on 9!). Mine was down to 2 last October. My iron in my blood was always normal though.

    I'm glad things went okay and you might be getting some concrete answers in the new year :)
     

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