How to measure RANK/L and OPG serum levels?

[Sarah030609]

Hi all,

I have 2 questions and then I'll explain my story:

- Are RANKL and OPG available as blood tests (medical journals show patient testing of serum levels of these but I've struggled to find places that offer them as blood tests)?

- Should I be seeing an endocrinologist or geneticist for issues related to RANKL and OPG?

I applied topical tretinoin for the first time. At the time, I had insufficient vitamin D because I was working from home and being on the anti-aging bandwagon I was wearing factor 50 sun block every time I left the house. I was also on a vegan diet and no supplemenets hence virtually no vit D from diet. But I was, up to that point, a fit and healthy 29 year old with no previous health issues so I had no idea I was about to make the mistake of my life.

I noticed initially changes to my eyes. The area around them seemed to be less. But I'd had cheek fillers in the summer so I rationalised that it was just the cheek seeming puffier.

The next week I re-applied (as I wanted to ease myself into using it). I woke up in the morning and my entire eye socket had eroded. As in - the complete area around the eye was gone. I looked like an owl. It was awful.

I had also suddenly become photophobic - i.e. I couldn't look at any form of light - especially artifical light without horrific migraines - to the extent that I had to cover every light source in my house. I was dizzy, nauseous, confused and at some points - couldn't read or comprehend what people were saying to me. It was scary.

I frantically googled and other people had commented online about tretinoin causing fat loss and particularly, eye hollowing.

They said derms and docs all told them the same thing - it can't happen and many avid users of tretinoin were rebuking them with: "This never happened to me, therefore you must be lying". Erm, different people react differently to different things? Simple logic seemed lost on these people.

Anyhows, I went to my docs and most of them had no idea what tretinoin was and so decided nothing could be done. One did and used to work for a company that sold it and told me it could in no way be related to tretinoin - as it didn't penetrate the skin deep enough.

This was the start of my horrific journey.

The next week my breathing changed. I could no longer take a full deep breath and the position of my trachea moved meaning that it no longer felt the way it previously had done to breathe. I was very worried - the doctor told me it was obviously anxiety. At first I believed them.

But then I realised my face was changing more.

Over the next few months I suffered a significant "erosion" of my entire lower face, my eyes continued to recess into their sockets to the extent that I now cannot apply eye-liner as I used to because there is not enough lid and it looks ridiculous. I look like an owl - when it is dark you can literally see a huge circle and the eye way recessed inside. I had very prominant large eyes previously that I used to slather in eye-liner because the lid was so large.

My neck is so tiny and fragile and my head feels unstable.

I have difficulty

Some bones in my body recessed too - for example, my clavicle and shoulder blades. I had a lovely neck line and prominent clavicle and it is now completely flat.

It's only recently that I have come across a MAJOR body of evidence, including medical journals that state that vitamin A erodes bone, especially in the context of low vitamin D (A and D are highly dependant on each other when it comes to bone health). Tretinoin IS vitamin A. It has been well documented in animals and humans and I've found countless studies that back this up.

The initial symptoms I had seem to match hypervitaminosis A (a toxic reaction to excessive vitamin A (obviously in my case exacerbated by a D deficiency) almost exactly).

Furthermore, tretinoin DOES penetrate to the dermis level (according to many medical texts) which means that it can easily get into the blood stream.

It isn't even licensed in the UK or Europe and has just been banned in Kuala Lumpa as a toxin. Naively, I trusted all the stuff I'd read about it because it is apparently the "gold standard" in the US - although I've read many horror stories subsequently.

My problem is proving this.

My GPs have written me off as a nut job and their excuse is: "We don't know what you looked like before" and hence I can't prove it.

I have clear photos which I enlarged on photo paper and THEY REFUSE TO EVEN LOOK AT THEM (I really have been treated disgracefully).

The only thing they did to was refer me to an endo which I've had to pay privately for.

At first I had private CTX and P1NP tests done and was surprised when CTX came back normal.

After further research, it is evident that the mechanism by which vitamin A resorbs bone cannot be measured by CTX (it has nothing to do with collagen fragments) but it CAN be measured by RANKL and OPG levels.

So, this is my only chance of a diagnosis.

They can't really do imaging because there is no before of my bones to compare it to.

Please let me know where/how I can take RANKL/OPG tests?

Thank you,

Sarah R