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Update & Dr.Donovan

Discussion in 'Women's General Hair Loss Discussions' started by JenVoy, Jan 20, 2017.

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  1. JenVoy

    JenVoy Established Member

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    Hope everyone is well! I haven't been here for quite awhile. I was content to just deal with what I thought (and unsure of now) is CTE. I had mentioned previously, I had started trazodone in June of 2015 and exactly a month later my hair was shedding. It was horrible clumps of hair being lost from July-December. It let up one random day and than kicked back into shedding in high amounts.

    I was diagnosed having TE initially by a derm (caused by stress. ) than another "hair loss specialist" said it was CTE caused by stress OR might be Androgenetic Alopecia.

    So 18 months later...my hair is still falling out. Wanting some validation (and some questions answered) I made an appointment with Dr.Donovan in Vancouver (who I heard great things about.)

    First of all, he was very educated and kind. He did answer all of my questions. He did actually look at my scalp. BUT...I find it so hard to believe his diagnosis. He claimed I had CTE and Female pattern balding. I know for a fact I would NEVER have had hair loss if I had never taken the trazodone. If I could go back in time and undo the damage...I would! I wouldn't be where I am now.

    How I could end up with FPB from taking trazodone is crazy to me! Plus...he indicated "it was happening slowly and unnoticed but the CTE made it more apparent." What?! I had enough hair for 3 people! I was a shedder but I wasn't experiencing Androgenetic Alopecia prior to June of 2015!

    I had a known trigger. I get CTE but not Androgenetic Alopecia. I'm still confused and it pisses me off that I'm going through this. I often feel like the only person experiencing this...until I come back to these forums to read endless stories.

    Of course, his first suggestion is using rogaine. Something I avoided.

    I guess my question...(which might remain unanswered) is has anyone here read or heard OR even experienced CTE that appeared or was diagnosed as Androgenetic Alopecia only to fully recover?
     
  2. Chasrogers01

    Chasrogers01 Member

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    Look at all of Jehope's posts. She looks fully recovered, and you can view her regimen.
     
  3. JenVoy

    JenVoy Established Member

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    Well that was distressing to read some of her posts ...she was on Spironolactone and rogaine
     
  4. mellie

    mellie Established Member

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    Hi Jenvoy,

    Sorry to hear about your diagnosis. Same thing happened to me when I went to see Dr Donovan last year (he was in Toronto then). He told me I had multiple TEs (by looking at the different length of hair regrowth) but that I also had Androgenetic Alopecia and that the TE basically accelerated it. I remember him asking me if my hair at 33 (3 years prior and before the hair loss) was the same as my hair at 25 and I said absolutely yes! And he was surprised. There is MBP in my family (father and brother) but only on the male side. So basically I feel the same way you do, that if I hadn't gotten off the BCP in 2015, I would still have all my hair today. It's a tough pill to swallow. I sat on that diagnosis for a few months, not doing anything about it. I was still processing. But then in July of 2016, I decided to start Rogaine as Dr Donovan recommended to do first. It definitely slowed the shedding and I am seeing regrowth but overall I'd say my hair is still getting thinner. His second recommendation was to add 200 mg of Spironolactone after being on Rogaine for 6-8 months and that's where I am at right now and I am really on the fence. I went back on BCP (Desogen) so I could easily add Spironolactone but I am a little frightened about this drug and possible long term side effects. Yet, if I had a crystal ball and knew it was going to work, i would probably do it. I saw the posts and pics from Jehope and she had an AMAZING recovery!

    Are you on any kind of hormonal drug (pill, etc)? Also, is there any genetic hair loss in your family?
     
  5. DisTressing

    DisTressing Established Member

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    Hey JenVoy,

    It's been a long time since I've been on too. A friend sent a link to your post and I wanted to get back to you on this. I was very upset to read what Dr. Donovan told you and it raised a bunch of questions in my mind. He has never examined me in person but I've communicated with him on so many CTE/TE and Androgenetic Alopecia questions over the last two years I've lost count. One thing I will tell you from my experience with talking with him in this format is that he has a tendency to contradict himself. However there are two key things he has told me many times: that CTE occurring with Androgenetic Alopecia is NOT common, and a high amount of shedding is highly uncommon in Androgenetic Alopecia. So I am intrigued and confused by his diagnosis.

    So now my questions. Where did he get this diagnosis from? He has also told both myself and my friend a number of times that it takes quite a bit of effort and expertise to make this distinction (Androgenetic Alopecia vs CTE). He said up to three biopsies were necessary. Did he do any? How closely did he look at your scalp, and did he spend a lot of time examining your hair under a microscope? He may be making his diagnosis by the number of hairs he sees growing out of each follicle. Not that it matters according to most specialists I've heard from, but do you have a family history of Androgenetic Alopecia anywhere?

    You said you had "enough hair for three people". Did you mean you currently have a lot of hair on your head that has grown back? Or do you mean before this started you had a great deal of hair on your head? I ask this because most specialists I've asked - and I've asked quite a few - if thickness of hair had anything to do with the likelihood of developing Androgenetic Alopecia and all agreed that just because we had extremely thick hair to start out with, this in no way determined the likelihood of whether we would get Androgenetic Alopecia down the road.

    I would be so interested in hearing back from you on all of these questions if you get a chance as I want to understand what he is basing his FPHL diagnosis on.

    And of course you are NOT alone. I'm into year three of this horror show, and like you had a break in shedding only to recently start up again. I do have quite a bit of hair on my head, no obvious FPHL typical pattern, but I do have hair of multiple lengths suggesting perhaps multiple TEs. However what really bothers me is that one side is far thinner than the other and has been for two years, and it appears that all my "new" hair is coming in at roughly half the density it used to be. It's all very fine. Reading your post makes me think he would say I had Androgenetic Alopecia too.

    What particular pattern do you see with your hair loss? Is it growing in thinner now? Do you have a widened part? Is your hair thinner on one side of your head than the other? Do you see marked thinning at the temples as opposed to other spots?

    Also, if he is correct that you have Androgenetic Alopecia and I hope he is wrong, you did NOT get it from taking any drug. You would merely have accelerated its appearance by triggering CTE which then revealed the underlying condition.
     
  6. JenVoy

    JenVoy Established Member

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    Hi there! Thank you for your response! So to clarify, when I said I HAD enough hair for 3 people that is what I meant. HAD. Past tense. I have lost 70+% of my density. Losing hair for almost 2 years can do that to you as you know!

    Yes...I agree, he contradicted himself while I was there quite often. I did notice he does this when replying to others questions as well. My guess is ...he needs to cover his @ss if he is in fact wrong!

    I actually left there pissed off. Here's why:
    I asked if trazodone caused this entire mess. He stated, "yes." Okay so...that makes no sense! He diagnosed me with "early pattern femalee hair loss." AND CTE. He said that I had no miniaturization...BUT that when he looked under the microscope he saw that I only had 1 or 2 hairs growing within a follicle on a small portion on my crown. I had growing terminal hair on the rest of my scalp. He never told me why I had less density on the front of my hairline, and temples.

    I do have a wider crown. BUT, I also stated to him that I had post partum hair loss after the birth of my son. I did notice that my part widened a bit in the same spot I have an issue with when he saw it and pointed it out. I told him that I had a noticeable widened part and diffuse hair loss after the birth of my son 4 years ago. BUT, that it all grew back like it was prior to having my son! He said nothing in response.

    He said "I did in fact think you had CTE when you first came in today. But I really think you have early female pattern hair loss and CTE." Then I proceeded to ask him, "if this was in fact CTE...is there a chance my hair will all grow back once it stops?" He then told me "yes."
    HUH? You just told me you were certain I had Androgenetic Alopecia and CTE. I'm confused. To make matters more confusing...he stated that the likelihood of my shedding stopping was 95%. He also stated that the likelihood of it growing back was 30%. Again, here is where I firmly believe that he needs to C.Y.A. just in case I am the 30%.

    Bottom line is, Trazodone caused my hair loss. I would have NEVER had a diagnoses of Androgenetic Alopecia, ever in my lifetime if I had not taken the trazodone.

    To answer another question...yes hair loss runs on my dad's side. My dad has hair loss. But as I have done massive research...it's kind of irrelevant. There are some women who have zero Androgenetic Alopecia on either side and are suffering from unexplained hair loss. My hair loss was induced by a medication.

    Another reason I'm pissed at his certainty with my diagnoses is this....I explained to him that I had post partum hairless 4 years ago. 4 years isn't that long ago. If I was destined to have Androgenetic Alopecia (as he indicates) why didn't I have unmasking of Androgenetic Alopecia at that time? I had hair loss. I had shedding that occurred. He didn't answer this question btw. He just stated that he believes my prolonged hair loss unmasked the early FPHL and it would have occurred. NO! I could put a million dollars down and jump in a time machine and not have taken that trazodone and show up with my thick, hair and prove to him that he was WRONG!

    I'm scared out of my mind to try minoxidil. It comes with side effects. Given that trazodone caused my hair loss and it was a less than 1% chance of occurring. You can see where I'd be scared to try anything at this point.

    I wear hair toppers when I go out sometimes. Otherwise I do hair fibers and pull my hair back. It's depressing as all hell but I'm just coping at this point.

    I have not been on any BC since I stopped taking the trazodone on July 8th 2015. I was told by Donovan to start the rogaine at 1/4 cap on that part of my crown, and to go up to 1/2 after 2 months. He then told me to try laser cap or Viviscal after month 5-6 and I was to go back after a year. I think he is just wanting to see if I had different lengths of hair depending on the order of what he was asking me to do. That tells me that even he is unsure of what will work on my hair...thus the CTE diagnosis. He also claimed that rogaine is often prescribed and used by those with CTE lasting for longer than a year. Again, I think rogaine is an easy recommendation to make if a doctor is unsure of a diagnosis. He told me that a biopsy would be a waste of my time and money. He stated it would come back as "undetermined." I was told by another "hair loss" derm that a biopsy would show 90+% accuracy if I chose to do one.

    I also brought to his attention that I have personally seen many women recovered by year 3 of their hairloss. He seemed confused and stated he had never heard of that before. Hmmm. I have been speaking to 3 different women online (not on this forum) and they all recovered after 3 years of hair loss similar to mine. They let it run it's course. One was diagnosed with Androgenetic Alopecia. This would seem to make sense to me, considering the anagen phase of hair is 3-7 years! Why wouldn't it make sense that women recover during this time?

    I don't get why he stated I had zero miniturization yet he diagnosed me with Androgenetic Alopecia based on the number of 1-2 hairs I had growing from the follicle in that spot on crown. It's been almost 2 years. Wouldn't there be miniaturization showing up? He said it would be eventual because I had "EARLY FPHL." Nope. Nope. Nope.


    All I know is, I am confused by all the diagnosis and recommendations. I will do what I think is best for me.

    If my hair loss does in fact stop (as he stated it would eventually) and it starts to grow back. I almost think I will go back there and sit down with him again and discuss his FPHL diagnosis being inaccurate. I think it would make him consider doing more research and hesitating more to be so matter of fact with his diagnosis.

    - - - Updated - - -

    Oh and forgot to add:
    He stated that my scalp thinks this hair phase/shedding "is the new normal" so it keeps cycling into the telogen phase constantly.
    The ONLY thing I agreed with him on!
     
  7. patient_flower

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    I'm glad you are sticking to your guns, Jenvoy. Same with me- had NO prior hair loss, took propranolol for anxiety, major TE after. I am 100% certain my initial TE would NOT HAVE HAPPENED had I not taken that drug. Like you I'm just having TE after TE, no visible signs of minituzation persay, just lack of regrowth all together... Now anything I do, any change to anything, causes more shedding a few weeks later. My doctor thinks it is Androgenetic Alopecia unmasked by TE but Androgenetic Alopecia doesn't happen this quickly and usually you get weak, flyaway hairs before it falls out all together. I'm still figuring things out. Just recently found out I had copper overload and too little zinc (zinc and copper must be in proper ratio, 8 zincs to 1 copper) and vitamin d. My OBGYN DO found this out actually not my derm...

    Wishing you the best. Thanks for sharing your Dr. D experience. I may just save my money, then.
     
  8. DisTressing

    DisTressing Established Member

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    Hi JenVoy,

    I'm so sorry this happened! This diagnosis sounds like it's all over the place to me. A lot of weird things going on here. When he told you that drug started your hair loss, I believe what he meant was, it started the TE that unmasked the FHPL, if this is what you have. Androgenetic Alopecia is not caused by a drug. He even explicitly states that somewhere on his website. I tried to find a link to where he states this and couldn't locate it because he's such a prolific blogger. I know that less density at your hairline or temples can be indicative of either Androgenetic Alopecia, TE, or CTE, so it isn't really possible to tell you from that alone which condition you have, or if you have a combination of these disorders. I had no bangs or temples for the better (or worst, actually) part of two years and only in the last couple months do I suddenly see that huge empty space on my forehead closing up. But that doesn't mean I'm out of the woods. There are different degrees of Androgenetic Alopecia, and yours, if you do have it, could be very mild and it could all come back.

    AGreed - It doesn't matter if your male relatives had or didn't have hair loss -- the one thing every single dr I asked agreed on is that family history or a lack of it does not matter at all, although I am of the opinion that if your closest female relatives never had it, the likelihood is less that you have it. Though I am no doctor, I think in hair loss time, 18 months after ending that offending drug is not necessarily a sufficient amount of time for your hair to recover even though the suspected trigger was removed. According to Dr. William Rassman, a hair loss derm in LA, the hair tends to keep cycling and it could take 2-3 years to recover.

    I agree that miniaturization is a gradual process and for some people it can take many, many years to show up, while in others it is extremely aggressive. I believe the typical anagen phase for Caucasian women is more like 2 to 6 years. Asian women have longer anagen phases. I don't know if anyone can answer the question of why your Androgenetic Alopecia did not materialize four years ago other than to say it was too soon for it to become apparent, if it is actually present at all.

    What is really bizarre about this consultation is that he assumed you just had CTE when you came in, then made his diagnosis using only one criterion and firmly stated that a biopsy would be a waste of time. That strikes me as really, really strange. He's said again and again in various responses online that it is very difficult to distinguish CTE from Androgenetic Alopecia, and often up to three biopsies are required, always adding that a skilled pathologist and hair loss derm need to interpret the results. So now he's saying that neither he nor a hair loss pathologist reading the results could determine exactly what is going on. This all sounds a little shaky to me. If there had been no doubt in his mind the minute you walked through the door that you had Androgenetic Alopecia, that would be one thing, but this doesn't sound like the case.

    Also, if he is so convinced it is Androgenetic Alopecia, why would he prescribe Rogaine without an oral androgen blocking medication?

    And the last thing he stated about "the new normal" for shedding is something that applies to CTE, not Androgenetic Alopecia, and again, he has often insisted that it is very unlikely for CTE to occur along with Androgenetic Alopecia. So I do not blame you for being confused. I think I would seek out at least one other opinion. Good luck and hang in there. It is usually the case that we just need to wait it out before it comes obvious what our hair is trying to tell us!
     
  9. JenVoy

    JenVoy Established Member

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    How frustrating! I hate that they automatically jump to Androgenetic Alopecia! Why? Because they DON'T have all the answers! That's an easy explanation to give! How would they make money otherwise? I know if I was a derm and had the means to help I would recommend bimatoprost (latisse) NOT rogaine! Which, can cause a multitude of side effects!

    Right now MY next course of action is trying latisse (even though it's a low dose). My sister who owns a day spa prescribes latisse to her clients. She stated a woman had very little eyebrows for years, started to use latisse and grew her eyebrows back. This tells me that latisse does in fact work to help grow back hair. However, the mg are so low on a regular prescribed latisse bottle that it may not bring the effects that one would like. It helps keep the hair follicle in the anagen phase. Therefore, latisse is my choice as of now. Rogaine can wait!

    I wish you the best as well! I truly hope you get a resolution of some sort or that your shedding stops. And yes, save your money. He is a very educated man, no doubt! BUT, I think he would look silly and not trustworthy if any of us women paid him an expensive visit and his response was, "I'm sorry, but I have no answers." He'd have to give at least some kind of educated GUESS wouldn't he? ;)

    - - - Updated - - -

    IMO, it was easy for him to diagnose me with both CTE and what he said was "Female pattern hair loss." He stated when I walked in he was quite sure it was CTE but as he took a further look up close he noticed the less density and 1 or 2 outright growing hairs on the follicles on a 3-4 inch part of my crown.

    Someone else here had a hair loss pattern indicative of Androgenetic Alopecia and yet, once their telogen effluvium ended, they started to regain their hair.

    I think spending $650 for a consultation and diagnosis with this Doctor, one is expected to walk in their with answers. That is exactly what he is providing. Are they right answers? Nobody knows. He sure thinks so. He is very educated, he knows about hair loss. But he does NOT have all the answers. It would look pretty silly to walk into a hair loss specialist and have them answer with "Sorry, I don't know what's going on with your hair loss!" That's his job...as well as all doctors out there. You're paying them to provide you with answers. Things are NOT so cut and dry with women's hair loss. They're people like everyone else.

    I stated in a previous post here. If and when my hair returns and this was in fact CTE, and is triggered by a medication. I WILL be going back and having him look at my scalp again and I expect him to provide me answers as to why he diagnosed me with FPHL and CTE. I want to know what his answers will be. I also think he double diagnosed me to cover his @ss, just in case he IS wrong.

    To answer another question...he did tell me that I could try a BC or Spironolactone. I told him that was out of the question, since I am borderline hypertension.
     

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