Hi Pavla - and anyone else reading!
I'm sorry it has taken me ages to post an update since seeing Ian Sallis, my life has been manic to put it mildly and even now I'm shattered and need sleep but thought it best to drag myself to the pc to write an update.
So I saw Ian around 15 September I believe. I showed him the letter/diagnosis from the Derm of FFA and he obviously took a good look at my scalp. He totally disagreed with the diagnosis! He actually said that if a biopsy hadn't been taken that suggested FFA, then he would not have even considered it in my case. To say I was in shock is an understatement - this is the last thing I was expecting! He said he thinks I have hereditary female pattern baldness but that it's being exacerbated by low vitamin levels. Another thing - I had a blood test done at my GP's just before I saw Ian, and although I didn't take the results to him, I told him everything came back ok. He said - what your GP says is ok and what I think is ok are often two different things. I sent my blood results to him afterwards and he said my iron levels were really low, my vitamin D levels needed to be double what they were and my B12 needed a big boost too. Again I was in shock. I googled iron levels to be sure of what he was saying and he's right, my levels are really low.
Another thing which is great about the appointment is that I mentioned I had seb derm on my face - above eyebrows and not sure if this or the FFA led to hair loss in the eyebrows, but he said he has seb derm too! I was relieved and also thankful that he understood I have several possible issues affecting the hair loss. He did say he couldn't advise about the hair on my face as much but to use the coal tar shampoo he suggested to see if it cleared the seb derm on the scalp. I doubted it would as I've used T Gel in the past, however the Alphosyl he advised has worked like a charm! Also feels as if it has made my hair thicker pretty quickly!
So to summarise he suggested boosting all my vitamins, using Regaine 5% and applying the Alphosyl shampoo for at least 3-4 months and see if it makes any difference. He did say not to tell the Derm we are disputing his diagnosis until we are sure this is working, but he said that the pattern of my hairloss did not suggest FFA at all. He also massively reassured me when he said that any scarring I had was minimal in his opinion, and not all over my head as the Derm had led me to believe. He said he felt optimistic that my hair would grow back. I've got to be honest and say I still feel cynical about this - because I am so far away from believing I will be ok again - but there have been a few differences already.
I have taken everything suggested for almost 2 months so far. What I can say is that my hair on my crown feels thicker, which I didn't expect. I read your post about strengthening the existing hair Pavla, and this seems to be the only way to describe it. It feels 'poofy' or 'bouncy' on top even. I am finding it easier to disguise the scalp when my hair has this extra texture to it, although we are no way out of the woods yet.
One more thing, I have not noticed anywhere near as much hair falling out now. Before all this I had a lot of shedding every time I washed my hair every two days. Now I get barely 20% of what I used to. Again not sure what this is down to exactly but it makes me feel more normal and less upset.
I got my haircut a month ago - the ends really needed it! - and I told my hairdresser what I'm doing. I also asked her if she noticed any new growth, genuinely not expecting her to say anything, it had only been a month after all. She pointed to some fuzzy hairs on top of my crown but these might be too long to be down to the recent medication. Then she had a good look at the top of my scalp and said she could see a whole small area on the top of my scalp where hairs seemed to be growing back through! She pointed it out to me in the mirror but I think they must be so tiny I couldn't see them, however I believe and trust her - she has her own hairloss issues due to PCOS so she's really interested in this. I was stunned to hear that, but happy, obviously! Although I am hoping that more will grow back, I guess some areas may take longer than others.
I just wanted to post an update here to let everyone know what is happening and mainly because this condition could be misdiagnosed! Even if it's not, it seems that Regaine is something that could help. I am also noticing that the seb derm on my face is becoming easier to control, although I am also washing my face with a mix of baking soda and coconut oil for that too. The tiny baby hairs around my eye area have all come back - not something I actually want but hey ho! - and my eyebrow hair has been growing for a few months now too. I actually have needed to pluck my eyebrows weekly or bi-weekly again, whereas before I didn't need to touch them for 6-8 months?! I think the vitamins may also be having an impact although who knows at this stage. I am just happy that I may be getting somewhere, although I don't know where I will end up yet.
Thankyou so much to Pavla and this forum for being such a help! I wish I had gone to Iain Sallis much sooner. Can't wait to see him again in the new year - do note that he does not put pressure on seeing you again, he leaves it up to you! He actually told me not to come back for at least 6 months because it would take this much time to see a change and he's probably right, although he said I am welcome back sooner if I want to go. He took photos of the hairloss too which sounds simple but why don't the NHS do that?! It's exactly what needs to be done to see if anything is making a difference and if new hair is growing back or not.
Watch this space, there is hope! I would like to advise everyone to get a second opinion if they don't feel confident they have FFA. In my case, yes I have had itchy scalp but never saw any inflammation. I was puzzled when I was told to apply Dermovate to red patches on my scalp - as far as I am concerned, I don't have red patches! And believe me I can see whole areas of my scalp quite clearly thanks to the hairloss, it is all pale. Anyway I did not use Dermovate beyond about 3 weeks. I just didn't see the point. Iain Sallis said that FFA sufferers have their whole hairline move back upto the scalp, but he said my hairline looked normal, just patchy. So for him I think this is where part of the confusion is.
Must go to bed now. If anyone has any questions please feel free to ask and huge thanks to Pavla once more