Making the choice whether to treat your hair loss- Part 3

Read on to learn more about Jot’s history with treatment for Androgenetic Alopecia

Say hello to Jot (IG: @thin_hair_flair) who has become my international friend! I have so enjoyed getting to know this lady and chatting about hair, hair loss, and life in general. She was kind enough to agree to fill us all in our her history with hair loss treatments.

What type of hair loss do you have?

I was formally diagnosed with androgenic alopecia via a scalp biopsy over 25 years ago. Both my parent had thin hair, so I guess it wasn’t too surprising that I inherited the crappy hair genes too.

How did you come to the decision to treat your hair loss?

I went and saw a dermatologist about some skin issues and she mentioned that my hair looked like it was thinning. I hadn’t even noticed this myself! She then referred me to Sinclair Dermatology (probably one the world’s leading dermatologists dealing with female hair loss issues) for the biopsy, who confirmed the diagnosis, and then I can’t remember if it was him, my GP, or the first dermatologist who recommended that I start taking spironolactone and using topical minoxidil. I do remember being told that both medications had been safely used in women for many years (and this was confirmed by my endocrinologist who cleared me of PCOS) but I was advised that I would have to stop taking the drugs for at least 6 months if I wanted to start trying for a baby.

I understood that taking these drugs would be a lifetime commitment, and being in the health and science field myself, I trusted that the specialists were giving the best advice based on the research at that time, so I was comfortable with my decision to go down the medication path.
I will add that social media sites like Facebook and Instagram weren’t around at this time, so I didn’t know anything about fibres or toppers, or even wigs for that matter. Saying that though, I don’t think this would’ve made a difference to my decision.

What treatments have you tried?

In terms of medication, I’ve tried topical minoxidil, spironolactone, finasteride, duasteride, oral minoxidil (both in tablet and sublingual forms) and flutamide. I’ve also tried other non mainstream medical stuff like laser therapy, and acupuncture, and over the years taken some supplements (like those hair, skin, and nail ones), iron, and Vitamin D (I am always very low in both of those). With iron at least, there is some good evidence that for hair loss, it has to be at a certain level in our bodies.

One good thing was that the dermatologist (now the third one) who I had been seeing for many years, also had androgenic alopecia, and every drug she suggested I try was something she was also taking. So I guess if she felt it was safe for her to be taking it, I was also comfortable with it. I did make sure that I put in some time to review some of the clinical studies about what I was being prescribed. I went back to Sinclair Dermatology last year, and right now, they’ve put me on a compounded drug which includes bicalutamide, spironolactone, and minoxidil.

Has treatment been effective?

I get asked this question a lot but find it really hard to answer. The treatment definitely hasn’t allowed me to maintain a full head of hair, and it has thinned to the point where I either need to use a lot of hair fibres, or a topper. But over the years that I’ve been taking the medications, my expectations have changed. I really just want to slow down the loss as much as possible, and maintain what I have for as long as I can, so that I can continue using fibres or a topper.

If my hair loss got so bad and I had to transition to wigs, I’m not sure how I’ll cope because I don’t even like the feeling of having a hat on my head for too long! So this is what I am trying to avoid. Saying that, Sinclair takes progress pictures, and over the last 15 months it looks like I haven’t gotten any worse. If anything, there might be slight improvement, but nothing to write home about.

Considering I’m also now post menopause, and hair loss usually worsens at this time, I think I’m ok with my hair loss stabilising. The other thing for me is that it’s hard to know whether my hair loss might have been significantly worse if I hadn’t been on the meds all these years.

Has treatment impacted your lifestyle?

Spiro really screwed up with my cycle which was pretty annoying and also concerned me, because of course as females we often start thinking the worst when this happens. I’d take breaks from taking that, and my cycle would normalise again although it would take longer each time.

Topical minoxidil gave me an itchy, dry scalp, plus I just found it a bit tedious to have to apply, so I didn’t persist with that for very long. With oral minoxidil, I’ve noticed increased facial hair growth. It’s pretty ironic that the hair is growing where I don’t want it to! But I had been prone to this even before taking minoxidil, and there’s many more methods that can get rid of this, so I’m not fussed and it’s certainly not a side effect which stops me taking it.

Finasteride was the one medication that significantly reduced my shedding, but my libido took an extended holiday when I was taking it, so that side effect was enough for me to stop taking it. However, this can also be a symptom of menopause which I was going through at the time, so maybe this side effect wasn’t due to the medication. Either way, I felt it was best to stop taking it.

I know that having kids is really important for many women, so understandably thats often a reason they don’t want to take the meds. I knew from a very early age that I didn’t want to have kids, so I never really needed to stop the medications (although I occasionally did because I just got lazy).

But considering some of the potential side effects that some women do experience, they haven’t been too bad for me.

What do you want others to know about the decision to treat or not treat their hair loss?

You really have to weigh up the pros and cons, and decide what is right for YOU and your lifestyle. All medications have side effects, even over-the-counter and natural stuff, so keep that in mind.

Firstly get a proper diagnosis from a dermatologist who specialises in female hair loss (and not many of them do, so do your research). Ask lots of questions and don’t just get your advice from women on social media. Yes, ít’s a lifelong commitment to use the meds, but that’s if they work for you, right? And hair loss is a chronic condition, so just like any chronic condition which has no known cure (yet), medication will need to be ongoing.

But, if you don’t think they’re doing anything for you, whether it be regrowing your hair or reducing your shedding, or you experience side effects that you can’t manage or find too disconcerting, then you just stop.

It’s interesting, many years ago there seemed to be a stigma attached to wearing alternative hair, but that’s come a long way now and it’s accepted. What I see now, is a stigma attached to the decision to take medication. I see women on social media actively discouraging others not to even try the meds because that’s what they decided was right for them.

I would just say to these women, don’t try and convince someone that what was right for you, is right for them. Respect their freedom to choose and if you can’t support them, at least don’t make them feel bad.

What’s one thing you wish you had known about hair loss, coping with hair loss, or alternative hair earlier on in your journey?

I think that overall I coped pretty well with my hair loss and kept myself well informed (from the medical sense) of what was out there.

My mum had used scalp concealers and gotten a custom made topper (although I don’t remember it being called that), so I was familiar with these. Of course, both of these have come a long way, and with Facebook and Instagram, I’ve learnt a lot more about these non-medical ways of managing my hair loss.

On reflection, I would probably have gotten a topper much sooner. Despite the medication, I could see that my hair was still thinning, but I waited until it got super thin, before I bought my first topper. So of course to me, it looked so strange, way too much hair, and very noticeable when I first wore it. I felt so uncomfortable! But I think if I had bought a lightweight, low density topper in the early stages of my hair loss journey, it may have looked much more natural and much less drastic a transition.

I would say that in many ways, things would be easier If I was starting my journey now. Apart from my mum, I didn’t know any other women, let alone someone my age, experiencing hair loss. But now there are so many hair loss support Facebook groups, and of course a huge community of women on Instagram, so these are great resources that are easily available. I would encourage anyone going through hair loss to get involved with this social media community, but keep in mind all of your options when it comes to treating your hair loss.

So while Jot and I have the same diagnosis, our approach and commitment to treatment have varied greatly. You cannot base your decision off of someone else’s experience, but by reading about others’ journeys with hair loss treatment, you begin to look at all of the considerations you need to make before you decide about your own. Reach out to other hair loss sisters and learn about what they have been through with medical intervention, lifestyle factors that contribute to their decision, and go from there!

Jot, a HUGE thank you for your contribution :)!

Published by Elle Anne

Elle is for Laura. That's me! Thank you for following along with my hair loss journey!

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