Incognito

Back to my earlier GP visits, which hadn’t been particularly helpful, at the end of January I decided to get a referral from my GP to see a dermatologist. 

My latest round of blood test results still hadn’t shown up anything ‘unusual’, which was good of course as it meant that my hair loss was not a symptom of something more serious, and whilst everything I had read on ‘t’ internet suggested that nothing could be done, we thought it was still worth checking it out – nothing ventured nothing gained right?

I had also now definitely lost more than 50% of my hair (so no need for counting 🙂 )
and was way past the threshold of my GP being ‘allowed’ to refer me per NHS funding rules.

And, as much as I really really wanted to go back to my GP, take off my beanie hat and say “ta da –  told ya so”
and this urge was really very strong LOL, I decided to go private. 

I’m fortunate to be a member of BUPA, and I thought it would be a speedier route to getting a ‘formal’ diagnosis’ as I would be seen quicker, and who knows, maybe there was something that could be done. 

It was clear that I had alopecia, but what type, as there are so many and I was intrigued to know which one I had ‘got’.  My GP had suggested Alopecia Areata (AA), at least that was the leaflet she printed out for me, but then again I seemed to be losing ALL my hair which did not seem consistent with this.

I did have quite a fight with BUPA to get approval for a consultant appointment, as they said initially that they wouldn’t cover it as they don’t do ‘experimental treatments’ explaining to me that there was no recognized treatment for Alopecia (tell me something I don’t know). 

However, and after being put through to a ‘Manager’ and explaining that I didn’t necessarily want any treatment, experimental or otherwise, we reached a compromise.  They would pay for one consultation and related diagnostic tests, but not for any prescribed medications.

The next hurdle which I also hadn’t anticipated, was how long I had to wait for an appointment.  Usually if you go ‘private’ you get an appointment in less than a week, sometimes even the same day if you are lucky, but to see a dermatologist, even private, I had to wait 4 weeks. 

I dread to think how long it would have taken on the NHS, and I do feel very much for those with hair loss that have to wait so long for specialist advice.

Please note that this isn’t a ‘dig’ at the wonderful NHS who I genuinely believe are a truly great organisation (they saved my Mum’s life once, and also mine on more than one occasion) but they do have limited resources and for non-life threatening conditions you do have to wait to be seen which I think is fair enough mostly. 

Anyway, I was grateful to be able to go private even if I did have a little wait, and my appointment was booked.

In the meantime, I got on with stuff, as you do, bought another couple of wigs (more on this on my next blog) and waited patiently for the ‘big’ day to arrive. 

I was quite excited in a weird way, not because I was expecting anything in terms of treatment, but I wanted to know what type of Alopecia I had and was interested in a prognosis.

Would it ever grow back?
(the six million dollar question)

Well the consultant was lovely of course, very sympathetic to just how much hair I had lost, by this time I was predominantly bald with only a little ‘tuft’ left at the front, and I finally got a formal diagnosis.

Alopecia Areata Incognita. 

Alopecia areata incognita, also known as diffuse alopecia areata, is a rare form of alopecia areata described predominantly in young women. In cases of alopecia areata incognita, the typical patchy distribution of hair loss in classical alopecia areata is absent, but abrupt and intense hair loss is characteristic.

It’s very rare, I felt very special 🙂

(even though I’m clearly not a young woman)

She still couldn’t say whether it would ever grow back, but we discussed various treatment options, and she was very honest. 

Some work, some don’t.  Some will work on some people, but not on others.  Some are very invasive (they shut down your immune system almost completely), some are very painful, localised injections of steroids (can you imagine that ALL over your head) and all carry some sort of risks.

To be honest I wasn’t prepared to shut down my entire immune system ‘just’ for my hair.  I know that many are devastated by hair loss, and yes it had impacted me clearly, but not so significantly that I wanted to risk my general health, and how wise that decision was (we are end of Feb at this point and we all know what’s coming right !!).

We decided on some ‘lotion’ that I would rub on my head.  It was still quite strong though and I could use it for no more than six weeks.  If it hadn’t worked in that time it wasn’t going to and we could then look at the other options

It did make me laugh though when I picked up the prescription:

I looked it up (of course) and as mentioned above, it’s a potent topical corticosteroid usually used to treat e.g. Psoriasis and other skin conditions and there were several warnings about applying it to to your head.  

Still if you really read all the small print that comes with your prescriptions you would never take any of them, and as mentioned earlier, nothing ventured nothing gained.

It was quite difficult to apply though, more typically used on small ‘patches’ whereas I had to apply it evenly on my whole head, and it was VERY cold ! 

Still, I’m not complaining and I started using it as directed once a day, at night. 

Good job too as it was also flammable and after applying it you had to keep your body away from fire or flames, and of course I don’t typically light up a ‘fag’ in bed 🙂

Photo by Braydon Anderson on Unsplash