My Wish List

 

Life without iodine is hell.  The inability to utilize it effectively, either due to direct mechanisms or via an autoimmune/hypersensitivity route, has contributed to my decline every bit as devastatingly as the diabetic who cannot get or utilize insulin.  Great strides were made when it was discovered that diabetics improved if fed desiccated pancreatic tissue, and that hypothyroid patients improved when fed desiccated thyroid tissue.  This was further refined and a real revolution occurred when insulin and thyroid hormones were discovered as the active ingredients, isolated, and then mass manufactured.  These hormones have helped many people to live a life they could not have otherwise lived.

But for many people, simply taking these hormones is not enough.   For too many, there is more to the story going on here than simply replacing the hormones in the blood stream as an answer.  Localized tissue and cellular control via cellular, intracellular, and mitochondrial regulation and homeostasis mechanisms, is paramount.   Damage or depletion of any one mechanism can set off an entire cascade of effects, often felt systemically due to the systemic nature of hormones in general.   Diabetics and thyroid patients are always at risk for a variety of complications over time, and often have a lower quality of life overall, including lower life spans.  Having lived on “both sides of the fence”, with both a fully functional endocrine system for the first 50 years of my life, and a severely damaged one the subsequent five years of my life, I can safely say that nothing beats a working endocrine system.  The systemic nature of the endocrine system affects every organ, tissue, cell, and mitochondria in the body.  It’s the stuff of life itself.

We are once again on the cusp of a medical and scientific paradigm shift in the form of the functional genomic and proteomic revolution.  Scientific advances are coming fast and furious, and will be impacting routine medical care in profound ways.  Unfortunately, I won’t live long enough to benefit from it.   But if I had my wish, and millions of dollars right now, this list is what I would shoot for.  These techniques are here, right now, even if only in a very limited and restricted way.

Here is my “wish list”:

  1. I would like some bioinformatics folks to analyze my entire genome and epigenome, both nuclear and mitochondrial, and do genome-wide comparisons with every existing database out there. I would like particular focus, emphasis and scrutiny to occur in the potential areas for problems I have outlined in this website. Narrowing the focus to these areas would narrow down the search from “billions” to “millions” of suspected targets, which wouldn’t be that hard to review with the bioinformatics available right now.  Figure out where these drugs are binding and why in the FQT population.
  2. Once obvious or highly suspected genomic aberrations or targets are found, do all the necessary available testing, in vitro and in vivo, to learn and confirm outcomes .  Use CRISPR and some kind of vector to edit the genome as necessary targeting somatic cells.   A genotoxic drug may have suddenly and acutely altered targeted sites within my genome or epigenome , or turned something “on” or “off”.   Therefore, there’s no reason to think this can’t be reversed just as quickly.  Alternatively, or adjunctively, use RNAi to address an overactive antibodies or immune system.    I wish that AITD thyroid researchers (and researchers of other autoimmune diseases) would start utilizing RNAi to target specific autoantibodies – what happens when these Ab’s are knocked out?  What is the underlying pathology, if any?  This might help determine if these Ab’s are pathologic or compensatory in nature.   If a defective gene were actually confirmed, sign me up to be the first for gene editing to try and correct it.
  3. Using my own stem cells on a scaffold, rebuild a working thyroid gland and transplant back into me.   Or, if enough of my own thyroid architecture exists, simply inject stem cells to enhance regeneration of functional tissue once the genomic aberrations have been addressed.

 

Yeah, you can see why this is my “wish list”.  I’m not a millionaire, the future isn’t quite here yet, and the FDA would never allow me to be the volunteer for some of these approaches, as they would no doubt develop a sudden and profound interest in my “health and safety” – even as, of course, they continue to allow tens of thousands of people to have their lives destroyed by the FQ class of drugs alone.  But these approaches, or something similar to them, will be a reality someday.

I won’t live to see a treatment or cure for “Fluoroquinolone Toxicity”, or even a biomarker, given the current lack of interest.  But I hope that some of you will.

 

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