A Thyroid Patients Manifesto

Thyroid-patients-manifestoManifesto: “a written statement declaring publicly the intentions, motives, or views of its issuer” (Merriam-Webster)

I humbly offer the following manifesto for us as thyroid patients.


WE, as citizens maintained by thyroid hormone therapy,

declare our equal rights to health and well being.

We have the right to agency and choice within our thyroid therapy. We are not just patients to be passively managed.

We require patient-centered, collaborative care in partnership with doctors who understand research on thyroid therapy.

We should not be forced to pay out of pocket or travel long distances to gain access to such rare doctors.

We have the right to a health care system that does not overrule the discernment of such doctors with mechanistic flowcharts and penny-pinching policies that cancel the Free T3 and Free T4 hormone tests they wisely order. (1, 2)

We have the right to seek and achieve true euthyroid status, which ought to be defined accurately as individually-optimized thyroid hormone levels. (3, 4)

All we seek is freedom from both hypothyroid and hyperthyroid symptoms, a state that our fellow citizens can achieve naturally.

Each thyroid patient is unique.

Each of us responds differently to thyroid therapy modalities and ratios. (5, 6)

We demand the right to choose any thyroid hormone medication type that achieves euthyroid status, whether synthetic T4, desiccated thyroid, or any medication ratio of T4 and T3 whatsoever. (7, 8, 9)

Our doctors should not have the right to declare off-limits any pharmaceutical source of thyroid hormones in favor of their preferred therapy modality. Make us sign a waiver if it makes you feel better. We are the ones who must live with our choice every day for the rest of our lives.

Medical associations should not have the right to imbalance the pharmaceutical marketplace by evidence-selective consensus, drive up prices for orphaned drugs, influence shortages and cut off our options. (10, 11, 12)

We require our chosen therapy to be safely adjusted on the basis of clinical measurements and laboratory tests that are biologically appropriate to our health condition.

We have a thyroid gland disability.

Our disability is not erased by therapy.

Our thyroid disability must be accommodated by therapy or we will suffer unfair health limitations. (13, 14)

We, UNLIKE most citizens, can have great difficulty accessing the upper half of the Free T3 reference range on T4-only medication. (15, 16)

We cannot access this by raising our TSH.

We, UNLIKE most citizens, cannot so easily recover from Low T3 syndrome during chronic or critical illness.

We cannot recover as you can, by raising your TSH. (17, 18)

We, on thyroid hormone therapy, can suffer chronic T3 insufficiency even while TSH is normal. (5, 15)

In what unmedicated human being can this paradox exist?

We, on thyroid hormone therapy, can suffer chronic T3 insufficiency even if our TSH is fully suppressed by thyroid medication. (15, 19)

In what unmedicated human being can this derangement occur?

We must therefore weigh the health costs and economic costs of chronic suboptimal T3 against the risk associations of an isolated low TSH.

We demand to be included in scientific research on relationships between T3 hormone levels and human health and disease. For example, no research on health risk associations with TSH suppression has ever focused on thyroid patients who maintain normal or low T3 together with suppressed TSH. Yet we suffer TSH-suppression prohibitions based on research that has excluded us or has not even measured Free T3. (20)

We demand that medicine respect how autoimmune thyroid disease influences therapy. For example, some of us have TSH-receptor stimulating and/or blocking antibodies that directly manipulate our TSH independently of thyroid hormone levels. What medical schools teach doctors about TSH-receptor blocking antibodies that can cause hypo-hyper fluctuations and atrophic thyroiditis? (21, 22, 23)

We are clearly not like other people.

We are not regulated by TSH, a pituitary hormone.

We are regulated directly by pills containing T4 and T3 thyroid hormones.

We have a health condition in which TSH is blind to T3 levels and TSH can be unnaturally suppressed by T4 or T3 dosing.

We ought not to be monitored by TSH monotesting. (24-28)

We demand that our thyroid hormone therapy be set free from TSH pituitary hormone domination and restrictive thyroid hormone market manipulation.

References

  1. British Columbia Ministry of Health, & Guidelines and Protocols Advisory Committee. (2018, October 24). BCGuidelines.ca: Thyroid Function Testing in the Diagnosis and Monitoring of Thyroid Function Disorder. [Flowchart p. 12.] Retrieved from https://www2.gov.bc.ca/assets/gov/health/practitioner-pro/bc-guidelines/thyroid-function-testing.pdf
  2. Choosing Wisely Canada, Gilmour, J., & Mukerji, G. (2017, August). Less is more with T3 & T4: A toolkit for reducing free thyroid hormone testing. Version 1.0. Retrieved from https://choosingwiselycanada.org/wp-content/uploads/2017/09/CWC_T3T4_Toolkit_V1.pdf
  3. Andersen, S., Bruun, N. H., Pedersen, K. M., & Laurberg, P. (2003). Biologic Variation is Important for Interpretation of Thyroid Function Tests. Thyroid, 13(11), 1069–1078. https://doi.org/10.1089/105072503770867237
  4. Hoermann, R., Midgley, J. E. M., Larisch, R., & Dietrich, J. W. (2016). Relational Stability in the Expression of Normality, Variation, and Control of Thyroid Function. Frontiers in Endocrinology, 7. https://doi.org/10.3389/fendo.2016.00142
  5. Midgley, J. E. M., Larisch, R., Dietrich, J. W., & Hoermann, R. (2015). Variation in the biochemical response to l-thyroxine therapy and relationship with peripheral thyroid hormone conversion efficiency. Endocrine Connections, 4(4), 196–205. https://doi.org/10.1530/EC-15-0056
  6. Sawin, C. T., Hershman, J. M., & Chopra, I. J. (1977). The comparative effect of T4 and T3 on the TSH response to TRH in young adult men. The Journal of Clinical Endocrinology and Metabolism, 44(2), 273–278. https://doi.org/10.1210/jcem-44-2-273
  7. Tariq, A., Wert, Y., Cheriyath, P., & Joshi, R. (2018). Effects of Long-Term Combination LT4 and LT3 Therapy for Improving Hypothyroidism and Overall Quality of Life. Southern Medical Journal, 111(6), 363–369. https://doi.org/10.14423/SMJ.0000000000000823
  8. Kearns, J. E. (1957). Liothyronine (l -triiodothyronine) as a substitute for desiccated thyroid. Quarterly Bulletin of Northwestern University Medical School, 31(2), 97–98. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3803574/
  9. Newman, S., & Escamilla, R. F. (1958). TRIIODOTHYRONINE—Clinical Effects in Patients with Suboptimal Response to Other Thyroid Preparations. California Medicine, 88(3), 206–210. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1512399/
  10. Jackson, I. M., & Cobb, W. E. (1978). Why does anyone still use desiccated thyroid USP? The American Journal of Medicine, 64(2), 284–288. [Anti-desiccated diatribe.]
  11. McMillan, H. J., & Campbell, C. (2017). We need a “made in Canada” orphan drug framework. CMAJ, 189(41), E1274–E1275. https://doi.org/10.1503/cmaj.170195
  12. America’s Health Insurance Plans. (2016, October). Orphan Drug Utilization and Pricing Patterns (2012 – 2014). Retrieved from https://www.ahip.org/wp-content/uploads/2016/10/OrphanDrug_DataBrief_10.21.16.pdf
  13. Nexo, M. A., Watt, T., Pedersen, J., Bonnema, S. J., Hegedüs, L., Rasmussen, A. K., … Bjorner, J. B. (2014). Increased risk of long-term sickness absence, lower rate of return to work, and higher risk of unemployment and disability pensioning for thyroid patients: a Danish register-based cohort study. The Journal of Clinical Endocrinology and Metabolism, 99(9), 3184–3192. https://doi.org/10.1210/jc.2013-4468
  14. Bertoli, A., Valentini, A., Cianfarani, M. A., Gasbarra, E., Tarantino, U., & Federici, M. (2017). Low FT3: a possible marker of frailty in the elderly. Clinical Interventions in Aging, 12, 335–341. https://doi.org/10.2147/CIA.S125934
  15. Gullo, D., Latina, A., Frasca, F., Le Moli, R., Pellegriti, G., & Vigneri, R. (2011). Levothyroxine Monotherapy Cannot Guarantee Euthyroidism in All Athyreotic Patients. PLoS ONE, 6(8). https://doi.org/10.1371/journal.pone.0022552
  16. Woeber, K. A. (2002). Levothyroxine therapy and serum free thyroxine and free triiodothyronine concentrations. Journal of Endocrinological Investigation, 25(2), 106–109. https://doi.org/10.1007/BF03343972
  17. Economidou, F., Douka, E., Tzanela, M., Nanas, S., & Kotanidou, A. (2011). Thyroid function during critical illness. Hormones (Athens, Greece), 10(2), 117–124. https://doi.org/10.14310/horm.2002.1301
  18. Feelders, R. A., Swaak, A. J. G., Romijn, J. A., Eggermont, A. M. M., Tielens, E. T., Vreugdenhill, G., … Berghout, A. (1999). Characteristics of recovery from the euthyroid sick syndrome induced by tumor necrosis factor alpha in cancer patients. Metabolism – Clinical and Experimental, 48(3), 324–329. https://doi.org/10.1016/S0026-0495(99)90080-X
  19. Larisch, R., Midgley, J. E. M., Dietrich, J. W., & Hoermann, R. (2018). Symptomatic Relief is Related to Serum Free Triiodothyronine Concentrations during Follow-up in Levothyroxine-Treated Patients with Differentiated Thyroid Cancer. Experimental and Clinical Endocrinology & Diabetes: Official Journal, German Society of Endocrinology [and] German Diabetes Association, 126(9), 546–552. https://doi.org/10.1055/s-0043-125064
  20. Biondi, B., & Wartofsky, L. (2014). Treatment with thyroid hormone. Endocrine Reviews, 35(3), 433. https://doi.org/doi: 10.1210/er.2013-1083
  21. Jara, L. J., Vera-Lastra, O., & Medina, G. (2008). Atrophic Thyroiditis. In Diagnostic Criteria in Autoimmune Diseases (pp. 221–225). https://doi.org/10.1007/978-1-60327-285-8_42
  22. McLachlan, S. M., & Rapoport, B. (2013). Thyrotropin-Blocking Autoantibodies and Thyroid-Stimulating Autoantibodies: Potential Mechanisms Involved in the Pendulum Swinging from Hypothyroidism to Hyperthyroidism or Vice Versa. Thyroid, 23(1), 14–24. https://doi.org/10.1089/thy.2012.0374
  23. Diana, T., Olivo, P. D., & Kahaly, G. J. (2018). Thyrotropin Receptor Blocking Antibodies. Hormone and Metabolic Research = Hormon- Und Stoffwechselforschung = Hormones Et Metabolisme, 50(12), 853–862. https://doi.org/10.1055/a-0723-9023
  24. Hoermann, R., Midgley, J. E. M., Larisch, R., & Dietrich, J. W. (2013). Is pituitary TSH an adequate measure of thyroid hormone-controlled homoeostasis during thyroxine treatment? European Journal of Endocrinology, 168(2), 271–280. https://doi.org/10.1530/EJE-12-0819
  25. Wiersinga, W. M. (2014). Paradigm shifts in thyroid hormone replacement therapies for hypothyroidism. Nature Reviews Endocrinology, 10(3), 164–174. https://doi.org/10.1038/nrendo.2013.258
  26. Liewendahl, K., Helenius, T., Lamberg, B. A., Mähönen, H., & Wägar, G. (1987). Free thyroxine, free triiodothyronine, and thyrotropin concentrations in hypothyroid and thyroid carcinoma patients receiving thyroxine therapy. Acta Endocrinologica, 116(3), 418–424.
  27. Toft, A. D. (2017). Thyroid hormone replacement – a counterblast to guidelines. Journal of the Royal College of Physicians of Edinburgh, 47(4), 307–309. Retrieved from http://www.rcpe.ac.uk/sites/default/files/jrcpe_47_4_toft.pdf
  28. Toft, A. D., & Beckett, G. J. (2003). Thyroid function tests and hypothyroidism. BMJ : British Medical Journal, 326(7384), 295–296. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125169/
  29. Toft, A. D. (1985). Thyroxine replacement treatment: clinical judgment or biochemical control? Br Med J (Clin Res Ed), 291(6490), 233–234. https://doi.org/10.1136/bmj.291.6490.233

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