Thyroid patients are routinely excluded from low T3 syndrome (NTIS) research

Why are thyroid patients excluded_Most studies of Low T3 syndrome (NTIS) routinely EXCLUDE thyroid patients. Sadly, our exclusion has become a research tradition.

In this post, I lay out the landscape and extent of our exclusion from this valuable area of thyroid hormone health research.

Everyone loses by our exclusion. Especially thyroid patients.

Everyone has something to gain from our inclusion. It can be a win-win.

We can move forward if we can show people the loss and the gain.

WHAT IS LOW T3 SYNDROME (NTIS) ABOUT?

NTIS is a syndrome that is characterized by an isolated low Free T3 while the TSH is not elevated above reference range. It often occurs during the process of a critical illness.

NTIS research focuses on the causes, processes and health outcomes of thyroid hormone metabolism imbalances that deplete T3 hormone. It examines the phases of NTIS in the settings of various diseases, how people recover from them, and what factors may contribute to higher or lower rates of death or poor recovery.

People with thyroid disease on thyroid therapy are very much at risk of Low Free T3.

Many of us experience chronic low T3 during therapy before illness and during chronic and critical illness. WE are the people this field should be studying the most! 

What happens to us when WE get ill and our T3 stays low or goes lower ??

It just does not make any sense why we are excluded, over and over and over ….

THE MASSIVE SCALE OF OUR EXCLUSION

Here is an incomplete list of clinical studies on NTIS that EXCLUDED treated thyroid patients. Just scroll and notice the sheer number and range of health conditions!

  1. ZHANG ET AL, 2018 • Cardiac surgery in children
  2. SU ET AL 2018 • Surviving death after heart attack (acute MI)
  3. GAO ET AL 2018 • Chronic lymphocytic leukemia prognosis
  4. ATAOGLU ET AL 2018 • Cardiac, Kidney, Neurological disease & Cancer
  5. WANG ET AL 2018 • Disease severity in Chinese patients
  6. ZHAO ET AL 2017 • Post-stroke depression
  7. YAZICI ET AL 2017 • Acute coronary syndrome 1-year mortality
  8. YAN ET AL 2017 • Advanced chronic kidney disease
  9. WANG ET AL 2017 • Acute ischemic stroke
  10. ROTHBERGER ET AL 2017 • Acute heart failure
  11. QIU ET AL 2017 • Acute ischemia stroke
  12. JIANG ET AL 2017 • acute ischemic stroke
  13. GAO ET AL 2017 • Diffuse large B cell lymphoma
  14. ÇUHACI ET AL 2017 • Mortality in critically-ill patients
  15. BUNEVICIUS ET AL 2017 • Brain tumor 5-year survival
  16. ASFAR ET AL 2017 • Cardiovascular events in kidney disease
  17. XU ET AL 2016 • Acute Ischemic Stroke
  18. WANG ET AL 2016 • Idiopathic Dilated Cardiomyopathy
  19. PETRONE ET AL 2016 • Obstructive sleep apnea
  20. JANKAUSKIENE ET AL 2016 • LV mechanics post-myocardial infarction
  21. FAN ET AL 2016 • Radiation Enteritis
  22. RHEE ET AL 2015 • Cardiovascular risk factor in kidney disease
  23. QARI ET AL 2015 • Outcome of patients in critical care (ICU)
  24. KISHI 2015 • Risk in acute decompensated heart failure
  25. DIETRICH ET AL 2015 • Atrial remodeling in cardiac illness
  26. CHEN ET AL 2015 • Chronic heart failure & Type 2 diabetes
  27. ANASTASIOU ET AL 2015 • Acute liver failure
  28. KIM ET AL 2014 • ST-elevation myocardial infarction
  29. EDITA ET AL 2014 • Acute myocardial infarction
  30. CHUANG ET AL 2014 • Acute Heart Failure
  31. MEUWESE ET AL 2013-a • coronary calcification on dialysis
  32. WANG ET AL 2013 • acute ST-elevation myocardial infarction
  33. MEUWESE ET AL 2013-b • Cardiorenal syndrome
  34. BUNEVICIUS ET AL 2013 • Brain tumor surgery
  35. AGEWALL & TORNVALL 2013 • MI with normal coronary arteries
  36. MEUWESE ET AL 2012 • Maintenance hemodialysis
  37. KAYA ET AL 2012 • Coronary artery disease
  38. PAPPA ET AL 2011 • Non-critical illness
  39. PIMENTEL ET AL 2010 • Myocardial function impairment in heart failure
  40. PFISTER ET AL 2010 • NT-pro-BNP in cardiovascular patients
  41. IGLESIAS ET AL 2010 • Aged hospitalized patients after discharge
  42. GALLI ET AL 2010 • Pathophysiology of heart failure
  43. SONG ET AL 2010 • Stages of chronic kidney disease
  44. PINGITORE ET AL 2006 • Chronic heart failure
  45. PEETERS ET AL 2005 • Intensive care insulin treatment
  46. JAROSZYNSKI ET AL 2005 • ECG in hemodialyzed patients
  47. IERVASI ET AL 2003 • Heart disease mortality
  48. PAVLOU ET AL 2002 • Acute ischemic syndromes
  49. ASCHEIM & HYRNIEWICZ 2002 • Congestive heart failure
  50. FRIBERG ET AL 2001 • Acute MI (heart attack) mortality
  51. ASAKURA ET AL 2000 • Hyperemesis gravidarum (morning sickness)
  52. FEELDERS ET AL 1999 • Tumor necrosis factor alpha in cancer patients
  53. HEATH & LOUCKS 1994 • Athletic amenorrhea in exercising women
  54. LOUCKS & CALLISTER 1993 • Athletic amenorrhea in exercising women
  55. BELGOROSKY ET AL 1993 • Congenital heart disease surgery
  56. KAYIMA ET AL, 1992 • Chronic renal failure (kidney failure)
  57. KANO ET AL 1987 • Fulminant hepatitis
  58. FABER ET AL, 1987 • Hepatic coma, cancer, stroke, respiratory insufficiency
  59. KABADI 1986 • Metabolic control in diabetes
  60. BRENT & HERSHMAN, 1986 • Severe illness
  61. BRENT ET AL, 1986 • Severe illness
  62. DE MARINIS ET AL 1985 • Acute MI (heart attack)
  63. KABIDI & PREMACHANDRA 1984 • Type 2 diabetes
  64. KJELLMAN ET AL 1983 • Affective disorders
  65. BIANCHI ET AL 1983 • Critically ill patients
  66. BACCI ET AL, 1982 • Severely ill, hypothermia
  67. DAVIS ET AL, 1982 • End-stage renal disease
  68. KAPTEIN ET AL 1982 • Low T4 and Low T3
  69. KABADI ET AL 1982 • Diabetes, hyperglycemia
  70. DEMEESTER-MIRKINE ET AL 1981 • Elderly sick patients
  71. OLSEN, LAURBERG & WEEKE 1978 • Old age
  72. CHOPRA ET AL, 1975 • Liver cirrhosis, Kidney failure, Febrile illnesses

The list goes on…

I have so far found only THREE (3) articles on NTIS that examine the syndrome in treated thyroid patients. I’ll cover them in a separate post.

THE INJUSTICE

Basically, it’s unethical. All over the world, thyroid patients’ lives are affected by NTIS every day. We get sick and we lose T3, too.

Excluding us from NTIS resarch maintains apathy about thyroid patients’ suffering with lower T3 levels.

Excluding us perpetuates many myths about the insignificance of Low T3 during thyroid therapy. (See an earlier post where I debunk the myths)

Excluding us means that our T4-T3 conversion challenges, OUR hormone metabolic disorders and imbalances during thyroid therapy, do not get studied in the context of their effects on our overall health. 

Excluding us from NTIS research blinds people to the health outcomes of thyroid therapy approaches that fail to optimize Free T3 levels, and approaches that are more successful.

WHAT THYROID PATIENTS LOSE

As we continue to be excluded:

  1. Doctors continue believing that our health is not at risk from our low(er) T3. They are often falsely reassured that our thyroid therapy protects us during illness and low T3 is temporary.
  2. We have difficulty protecting our access to routine Free T3 testing to optimize our levels for our health and quality of life
  3. We lack a key rationale for RT3 testing. This subfield of research has relied on RT3 testing more than any other.
  4. We lack scientific backing to advocate for individually customized doses of T3 in our therapy for health reasons.

WHAT EVERYONE GAINS

Including us in NTIS research is a huge step toward the T3-paradigm shift we all need.

It puts focus on the power of T3 hormone over human health. 

It shows that T3 sufficiency vs. T3 depletion can make the difference between health and illness, life and death.

It takes the focus off of TSH for a change. The obsession with this hormone has blinded many to the independent health effects of thyroid hormone levels and ratios regardless of where TSH falls.

WE are the kind of research participants this area of thyroid science needs.

Our inclusion will include the missing variables of thyroid disease, thyroid loss and thyroid therapy types.

It is the path of innovation and exploration. This research tradition took an innovative path early in its development. It is multidisciplinary. NTIS is studied not only by thyroid scientists, but by experts in other disease areas, primarily cardiology and kidney disease. They want to understand how thyroid hormones influence illness in their area of specialization.

Currently, NTIS research is very fearful and reluctant to trial T3 thyroid therapies. We are already in need of thyroid therapy. Researchers don’t need to be as fearful of interfering with nature by exploring our T3 therapy options as we encounter T3 loss in critical and chronic illness.

Innovation in T3-based thyroid therapy in the context of NTIS can move our combination therapy trials past unscientific restrictions on tiny doses of T3 at a fixed ratio alongside T4 (these trials dose with fixed ratios of T3:T4 based on a statistical average found among 14 iodine-overdosed people in a study by Pilo et al, 1990).

If we are included, medicine will further understand thyroid hormone metabolism dysfunction in all humans.

A thyroid patients campaign that focuses on the T3 hormone fights for every human being, not just for people with thyroid disease.

Everyone needs T3 sufficiency for life.

Everyone can be at risk of T3 depletion, even the thyroid-healthy.

The T3 hormone does indeed hold keys to health and illness, life and death.

Including thyroid patients on therapy in NTIS research is that important, folks!

THE EXCITING FRONTIERS OF RESEARCH

Including thyroid patients in NTIS research means you, dear research scientist, can explore key questions that nobody else is studying:

  • Are certain kinds of thyroid patients more susceptible to NTIS?
  • Are certain kinds of thyroid patients more at risk of dying or not recovering from NTIS?
  • Can thyroid therapy itself induce the metabolic imbalances of NTIS even without an illness as trigger?
  • How does the process of recovery from NTIS happen without a TSH-stimulated thyroid gland? Can thyroid patients recover?
  • Which approach to thyroid therapy supports recovery from NTIS better than another?

WHAT CAN WE DO AS THYROID PATIENTS?

Speak out to researchers about the ethical injustice of our exclusion.

Tell them why it’s wrong to exclude us, and the benefits of including us.

Canadian groups we can address in our self-advocacy:

  • Researchers in the Canadian Society for Endocrinology and Metabolism (CSEM),
  • Medical research funding organizations like Canadian Institute for Health Research (CIHR) that select research projects to fund
  • Canada’s Tri-Council Research Ethics Panel, which is charged with educating researchers on ethical conduct in research and protecting the human rights of research participants

Our health and safety on therapy needs to be studied NOW, before we get sick and while we are suffering.

Continue your path of lifelong learning and develop your health advocacy skills:

  • Keep becoming scientifically informed about “Low(er) T3” causes. It can help build mutual respect in dialogue with your doctors. You can gain self-confidence to advocate for yourself and your peers.
  • Keep learning how thyroid hormones affect your symptoms and risks in other areas of health.
  • Use this body of research to advocate for your own Free T3 & Free T4 testing, RT3 testing, and customized thyroid therapy.
  • Keep following the Campaign’s posts and sharing dialogue in online patient groups. Let’s learn together the ways we can move thyroid therapy forward.

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Categories: Clinical trials, Low T3 Syndrome / NTIS

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  1. Low T3 syndrome in thyroid therapy: THREE studies – Canadian Thyroid Patients Campaign
  2. The basics of thyroid hormone action, transport and conversion – Thyroid Patients Canada
  3. Free T3 peaks and valleys in T3 and NDT therapy – Thyroid Patients Canada
  4. In 1981, Canadians argued T3 was the best test in thyroid therapy – Thyroid Patients Canada

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