As a follow-up to the first post in this thread, I would recommend that you take a look at this link
https://tirosintsol.com/?gclid=EAIaIQobChMIsefuiuuv4wIVjvhkCh2vHQk5EAAYASAAEgL0VvD_BwE
and scroll down to the first page and click on a video presentation by Dr. Nathan Becker, a world re-known endocrinologist who has a reputation for thinking outside of conventional thyroid dogma provided by many other endocrinologists and professional thyroid/endocrinology societies. Dr. Becker has been able to successfully treat many patients who had unresolved thyroid symptoms. Dr. Becker is located in S.F., California. He has an extremely busy practice and when I was a patient (almost 10 years ago), he did not take insurance, but you could receive a superbill that you could submit to your insurance carrier to see if they would reimburse you for all, some or none of the expenses incurred for your office visit and testing.
I am providing this information about Dr. Becker because I think he is one of the most knowledgeable endocrinologists that I have dealt with on my own thyroid journey (which has been extensive, very costly and time consuming). Unfortunately, I was considered to be one of Dr. Becker’s more difficult thyroid patients
that he tried to solve their hypothyroid issues. In fact he described me as one of only a handful of patients that he had worked with over his 40+ career that he had not been able to help address all of their hypothyroid symptoms. I left Dr. Becker’s practice when I felt he had done all he could do to help me and I was convinced that I was dealing with some other health issue than just Hashimoto’s disease, thyroid cancer and continued hypothyroidism symptoms following surgery for a total thyroidectomy.
At the time I saw Dr. Becker, he did not believe in the illness described as CFS. He did collaborate with Dr. Montoya at Stanford exchanging patients when one could not find an answer to the illnesses that they had expertise in dealing with. I found that interesting in light of the fact that Dr. Becker did not believe in CFS as a diagnosis (and did not have very encouraging things to say about “that doctor” from Incline Village ( Dr. Daniel Peterson).
Anyhow, Dr. Becker felt that my case was definitely related to thyroid issues and I would not benefit from being referred to Dr. Montoya. He did refer me out to see a rheumatologist to investigate this “thing” called fibromyalgia and also lyme disease. Neither which came up with answers for my particular issues. On my own I contacted Dr. Montoya and I was put on a very, long waiting list to be seen at Stanford’s CFS Clinic, so I never made it to see Dr. Montoya as a patient, but in subsequent years I became one of the research subjects in several of his studies.
By a set of unusual or fortuitous circumstances, at around the same time that I contacted Dr. Montoya’s clinic, I found a posting on a Patient Forum (maybe P.R.?) about a doctor who worked with Dr. Montoya and who was leaving Stanford and setting up his own practice for difficult to diagnose and treat illnesses. I “cold” called this doctor’s office before the practice was up and running. I left a message on an answering machine and received a call back from the doctor himself trying to figure out how I got his phone number and why his answering machine had been inundated by messages (mine being the first message on his machine).
After much cajoling and pleading by both me and my spouse, this somewhat reluctant doctor agreed to see me and eventually I became his patient and II was diagnosed with Chronic Viral Immune Dysfunction, which some people refer to as CFS or ME. This doctor was/is Dr. Andreas (Andy) Kogelink who is the reason there is a Open Medicine Foundation (a little detail that seems to get airbrushed out of the history of how this Foundation came to be - things like that can bother me a bit because I think that historical details do matter especially in the illness called ME, CFS or ME/CFS). Dr. Kogelnik is both an MD and PHD and runs the Open Medicine Institute (research arm of his business) and the Ooen Medicine Clinic (clinical side of his business). The research institute and clinic are located in Mountain View, California which is just a few miles from Stanford University.
Not withstanding Dr, Kogelnik and I trying a few treatments for CVID (ME or CFS), my seemingly hypothyroid symptoms and ME symptoms persisted. Now having no remaining thyroid and a history of thyroid cancer I was making the rounds to more endocrinologists to get my required thyroid hormone supplementation while also attempting to regain my health and solve the mystery of what thing had so terrorized my body immediately following the end of a lovely, but short vacation up in Incline Village, Lake Tahoe.
On my long journey to figure out my thyroid issues I was finally referred (last year) to Stanford’s endocrinology Department. Basically because it was thought that maybe their endocrinologists would at least collaborate with Dr. Montoya, since he was a Stanford doctor who treated ME CFS. No such luck on that count nor with any collaboration with Dr. Kogelnik (my current infectious disease doctor - guess once being a Stanford doctor does not hold much weight when you move on from Stanford). But by some magical aligning of stars, it was a doctor in the endocrinology dept. at Stanford that prescribed Tirosint SOL for me to try without wanting to read about research related to the issues that were being uncovered in places like the Netherlands re ME CFS and thyroid dysfunction. Just to be accurate here, there were doctors treating and researching ME CFS who have for a very long time felt the thyroid and this illness were interconnected. The historical details continue to hold many overlooked clues and perhaps answers.
Yes - to those still reading this long post, my winding journey to find something to treat my hypothyroid issues may have found an answer in liquid T4, which has required much less T4 or T3 than I have previously tried. Also, for those who still hold the TSH Test as the holy grail of thyroid function - my TSH blood tests are also finally showing some movement out of a super suppressed level that “scares” some of these professionals into admonishing me with dire warnings of extreme bone loss, stroke, heart attack and even death.
My hope by making this rather public post is that the ME CFS physicians/researchers and endocrinologists (and researchers with an interest in endocrinology) will work together to look at these clues (yes I do still believe in miracles
) to further explore the possible link between thyroid dysfunction and the viral onset of CVID, ME and CFS.
I am just one patient, but I do still have a somewhat functioning brain and with 28 years of my amateur medical researching skills and living every day with this illness, I do believe there are some real important nuggets of information that could be unlocked, if we could just get these professionals to show up at the party without their own set of biases and listen to each other and most importantly to really listen to those of us who are the ones who are actually being tormented by this “mystery” illness.
Maybe someone connected to the Open Medicine Foundation will see this post and consider adding in some of these doctors, researchers to their ME/CFS Symposium at Stanford in September. You just never know who may be out there willing to pick up your call or social media plea for help. Here is to all the patients who keep believing that the answers are out there, but not if the world will not listen carefully to our stories and to all the doctors and researchers who have come before them..
