A fundamental principle energizes any group of thyroid patients to try to improve thyroid therapy:
- Some thyroid-disabled people have suffered a lot and have won partial victories in their own thyroid therapy.
Now that they are on a therapy that is better than before, even if it might be far from perfect yet, they can finally think more clearly. They can be less fatigued.
These victory-winners now fear that they might lose ground themselves in the future.
Like soldiers who see their colleagues being wounded and falling in battle, they suffer some survivor’s guilt. Why am I getting help while they still suffer? They feel the deep sense of injustice that their colleagues do not have access to the same rights as they do.
They can even have the energy to feel some righteous anger at the injustice of what they and others go through on thyroid therapy.
They have some energy and inspiration to fight for both themselves and their colleagues.
These patients are the truest thyroid warriors.
They think of the future.
They are aware that the thyroid therapy scene is shifting. There is an opportunity to open doors and there is a risk that doors will close and be nailed shut.
They think of the past.
They wonder why thyroid patients in the 1980s, 1990s and early 2000s didn’t fight harder for better therapy guidelines so that they themselves didn’t have to suffer so much already.
They know their fight is not over, not yet for themselves, and not yet for their fellow thyroid patients, and not yet for future generations.
Who are we and where are we?
There’s a group of us thyroid patients leading Thyroid Patients Canada.
There’s a growing number of Canadian and international followers.
We’re involved in this campaign or we follow it because we know the challenges we face, and we feel a sense of urgency to do something about them, to hold the medical system accountable, and to disseminate the science that supports our rights as patients. We do evidence-based advocacy.
We have our boxing gloves on. That’s because our scientific study goes deep and gives us stable footing — we are not just whining victims. We are moving forward, citing and quoting and pointing at the facts. We are ferociously bold. We have solid ethical and medical grounds to expect better things of our health care system, and especially of endocrinologists. Way better.
There are other thyroid groups advocating for patients all over the world in various countries and in various internet and social media forums.
I’m so glad there are. We need more. And we need to take courage.
The challenges we still face
Thyroid disease is a chronic, lifelong condition for most of us, but it is not necessarily a static condition.
The wise among us are not resting on our laurels. We know our thyroid hormone dose may require adjustments in the future as we go through different stages of life.
Our various health challenges can radically shift our thyroid hormone levels, whether we have gone through or will go through thyroid cancer, or goiter, or nodules, or hyperthyroidism. We may have slowly or quickly progressing autoimmune thyroid failure. We may have a future pregnancy, or we may develop heart disease, or we may develop diabetes or dementia, which may worsen our thyroid hormone health while on therapy.
Our medical system and pharmaceutical marketplace may change how our condition is managed.
- Our good thyroid doctor may retire or move away.
- We may need to move to another city where there are no good thyroid doctors, just robotic thyroid flowchart-followers.
- Our future doctors may dismiss multiple signs and symptoms of hypothyroidism while our TSH is normalized and treat us with dismissal and condescension as if we are hypochondriacs.
- Our future doctors may push us to go on antidepressants for our depression or statins for our high cholesterol when a dose change or therapy change is what we really need.
- We may have to pay out of pocket to get a thyroid doctor who truly understands and is willing to treat our thyroid condition. Will we be able to afford that? And will our primary physician lecture us for consulting someone else just for our thyroid?
- Some of us may be treated well on LT4 monotherapy at the moment, but we may require a T3-based medication in the future if we lose T3 over the years and cannot regain enough by raising LT4. If that happens,
- We may find that the T3-based thyroid medication we need in the future is frequently on shortages or has distribution challenges.
- It may become unreasonably expensive due to unregulated pharmaceutical monopolies.
- It might not be covered by our provincial health plan, while the standard medication will be cheap, forcing us to choose between illness on cheap ineffective meds on the one hand, or poverty and better health on the other hand.
- As women, we may lose pregnancies because our FT3 and/or FT4 levels are too low in early pregnancy before we see a good gynecologist who checks all our levels.
- If we become pregnant, our doctor may not understand that hCG hormone secreted from the placenta can oversuppress our TSH, and doctors may cut back our dose and render us hypothyroid in our T3 levels.
- Our future doctor may lower our dose as we age because statistics in UNtreated older people say they are healthier if their TSH is mildly elevated. We are not like those UNtreated people in the studies in our T3 and T4 levels, but most of us have the ability to secrete TSH, so we are lumped in with them as if we are all the same.
- As we age, our TSH secretion may become sluggish due to other medications we’re on like glucocorticoids, or due to mild central hypothyroidism, and it may not flag us as being sufficiently hypothyroid to deserve a dose raise.
- If we get heart failure, liver failure or kidney failure, our T3 levels are even more likely to fall chronically low, and low T3 is not good for life expectancy in those health conditions, but nobody will see our chronic lower T3 if they only look at our TSH year after year.
- If we end up in hospital, some dimwit doctor might reduce our dose of levothyroxine, or nurses may forget to give us our daily dose, or not realize that we take a 2x daily dose of desiccated thyroid (NDT) or a 3x daily dose of mainly T3, and we might get even sicker because of their ignorance.
Is your battle finished?
I suffered many years, and I suffered very intensely for three months near the end of my time on a form of thyroid therapy that utterly failed.
I am now currently very blessed and lucky to have access to freedom from chronic hypothyroidism on a very different therapy.
Patients like me all over the world are being denied that right.
And I might lose my own rights someday, because I know from experience and my colleagues’ that our thyroid therapy system is broken.
That’s just not right.
That’s why my fight is not over.
What about you?
Are you in need of thyroid warriors to fight for you, and do you have the health and the will to become a thyroid warrior?
- Tania S. Smith
- … and my fellow Thyrodpatients.ca warriors
Categories: Our advocacy