Science is moving forwards and it’s you guys that are moving it!
I’m hearing there are some Oxytocin changes on the grapevine and some of it is thanks to YOU for reading and sharing my posts on Oxytocin and Hana’s trial and for persisting and believing that treatment for Pituitary patients could be better! Of course I’m not saying that these recent blog posts can account of all the changes happening now – the Pituitary consumer community was talking about Oxytocin waaay before I came along with Hana’s Story – but I do know that some of these recent changes occurred after my posts began to be widely disseminated. THANK YOU for doing this.
1. I have decided to truly try and move science forwards myself by writing a Case Report of Hana’s Oxytocin trial – Dr Hart (her prescribing Doctor) will co-author it with me and we will submit it to a Peer Reviewed Scientific Journal for (hopeful) publication.
2. “Toot Toot!”
One reader sent me a message saying she’d sent my blogs on Oxytocin to an endocrinologist in the USA. A few weeks later he apparently announced that he would begin prescribing Oxytocin! Hooray!
After reading my blog posts, another Endo in the USA has agreed that Oxytocin should be studied and is now contemplating doing it himself! Hooray!
3. German Expert
I’ve been in touch with an expert on Craniopharyngioma and Hypothalamic Obesity in Germany. I told him about our Oxytocin trial and he had this to say:
” Your treatment is very interesting. We currently investigate neuropsychological findings in appr. 40 craniopharyngioma patients in relation to their oxytocin concentration in saliva. We conducted this study during the national meeting of the support group which recently took place in Germany. We have no experiences on oxytocin treatment, but this study will hopefully be conducted during the next meeting in September 2015.”
I must say that I was ecstatic to be told that our treatment is ‘interesting’ – like many of you, I’ve been 1. frowned at for suggesting Oxytocin is required and 2. Regarded warily when I declare with such passion that it has TRANSFORMED Hana’s life. Instead – a very high profile Professor has said it’s ‘interesting.’ Ha! Recognition!
4. Other readers are pushing, asking and planting seeds of interest in the Medical Community. I know of three doctors that after being asked to prescribe it, have agreed to test for Oxytocin Deficiency. Although I don’t believe ‘testing’ for Oxytocin deficiency is necessarily helpful (Oxytocin is pulsatile – released in happy, huggy moments) the fact they have agreed to ‘look into it’ is so promising. Change is on the horizon!
5. Other readers are coming forth and sharing some fascinating stories – all point to the Heart Shaped Oxytocin gap in Hormone Replacement Therapy:
Check out Tanya’s comments:
“My attention was drawn to your blogs especially because of Hana’s emotional wellbeing and overall motivation + bonding experiences with the family. Very slowly over time I have ‘felt’ like there was something VERY missing. And after some hormone changes and coming off another drug last year I noticed that there is a huge ‘maw’ or gap in my emotional, plus social behaviour, self esteem, general wellbeing and ability to fulfil every day tasks.
In the journals you have surrounding Hana’s behaviour with people without oxytocin it is pretty much the same for myself. I have a hard time connecting to the ‘experience’ of bonding with people. I can ‘feel’ to an extent, but there is no bridge or gap to connect to what that person is feeling. I may feel a sense of emotion from another person’s experience, but I am not sure ‘how’ to feel it if that makes sense? It ‘feels’ like a lack of sensory problem that has only worsened over time.
I sometimes have a hard time interacting with the emotions of my children. This has been the biggest impact for me and clearly the most disturbing. Of all the people that we have in our life, our children need to see our emotions and also emotional wellbeing and quite clearly the kids haven’t seen that in me for a very long time. I am looking forward to discussing options with Dr Hart and I will be letting my current Endocrinologist know that way he can monitor my other hormone levels. I’m no longer shy about it. It has to be done. Not just for my kids, but also for myself. I will let you know how it goes.”
6. And here are the experiences of Carol who is now trying Oxytocin for her daughter:
“She feels better after 60 days on Oxytocin nasal spray. The only thing we could find was one source in the US. ABC Pharmaceuticals. We really don’t know if it is legitimate Oxytocin but we decided to try it anyway, with support from her Endocrinologist who said she is not able to prescribe it at this time but supported us trying what we could find online. One thing my daughter noticed right away after a short time taking Oxytocin was her skin seemed to heal much faster than usual.” (Hey it’s Nurse Naomi here, check out this to see why this skin healing speed could be improving on Oxytocin!)
“Previously if she got a small nick or cut it would take such a long time to heal, she seems to be healing much faster post Oxytocin use.
The situation you observed with your daughter and her relationship with her younger sister post surgery sounded eerily familiar. My daughter’s relationship with her younger brother- and her friends at the time- changed immediately after her surgery. At the time I thought it was the trauma of the surgery, hospitalization and rapid changes in her body. Many years later my daughter is a lovely young woman, but her social relationships have been a struggle, she doesn’t seem to be able to obtain that closeness with people that I just take for granted with my friends. It is hard to tell but I do think that she is feeling a bit more connected with Oxytocin use. We are convinced enough to re-order after the first 60 day trial.”
How interesting is all of that? Can you believe that thanks to all of you for talking, believing and for sharing my handful of Oxytocin posts amongst yourselves and with your doctors, that the future treatment of Pituitary patients could actually evolve? Can you believe that WE might move science forward together? Amazing!