I started this blog on July 2, 2016 in the hopes of documenting our experiment with oxytocin. I had no idea I would become so enamoured with learning about oxytocin and with sharing my discoveries with others... I am so grateful for the relative success we have found with oxytocin treatment, for the opportunity to share our experiences with others who are similarly impacted, and for the chance to educate readers about the existing research on oxytocin and its potential effectiveness as a treatment for PHP, hypothalamic obesity, and their related conditions.
Although there is research that suggests oxytocin may be helpful in improving metabolic health, social behavior, compulsive behaviors, etc., research in its application as a treatment modality is still lacking; more research is needed to understand whether/how it is effective for specific clinical populations and how the application can be translated into medical treatment (best practices, dosing, side effects, drug interactions, contraindications, etc.). I have been very encouraged by some recent correspondence with oxytocin researchers (both in basic science and medical science) who also shared their excitement about studying more about oxytocin in order to learn about its potential to provide relief for the sufferers of these pituitary/hypothalamic conditions.
From my correspondence with other sufferers/caregivers of pituitary disease, it is apparent that oxytocin is not on the radar of the majority of practicing endocrinologists as a necessary hormone to replace. However, from my reading of the literature and first hand witnessing the difference it makes in my son's life, I believe very strongly that it is an essential hormone in need of replacement. I hope that readers share our experiences (albeit anecdotal) widely among those who may be affected and their physicians. Given that the research on the clinical applications of oxytocin is still nascent, I can only hope that whatever interest is piqued by readers of this blog may be a catalyst for more oxytocin-related interest/application in clinics and labs.
If you care to participate in a questionnaire, I will survey readers to learn about symptoms are co-morbid with panhypopituitarism. My plan is to construct a survey that inquires into common symptoms known to exist in people with PHP and HO across various hormone-deficient diagnostic groups. I believe that many may be oxytocin-deficiency/receptor related but not all physicians are necessarily aware that they may be related to oxytocin deficiency. Perhaps data (including what we learn from this type of survey) demonstrating the prevalence of these co-existing symptoms will help educate us all across diagnoses (whether PWS, Central Diabetes Insipidus, or Hypothalamic Obesity). Could oxytocin deficiency explain the cluster of certain untreated symptoms shared by patients who suffer from pituitary and hypothalamic disease? Let's find out...
If you are a pituitary patient or caregiver of a pituitary patient and would be interested in participating in an anonymous survey on the common symptoms shared by people with missing hormones, please take the poll indicating your interest so I know whether or not to design and send out a survey. If I see that there is substantial interest from readers and believe I could get a large enough sample, I may design a survey. What I learn will be shared on my blog with readers (including oxytocin researchers) so that we can learn more about the common symptoms of these hormone-related disorders. My intention for this potential survey is shed more light onto possible oxytocin-deficiency disorders and prompt further research in this important area of medicine.
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