My commitment to you here is honesty. What I know is that when we’re feeling alone with our darkest thoughts, we’re not always sure someone else has felt the way we do. I think we’re more similar than we are different. Maybe my truth will reassure you that you are definitely not alone.
While my fear list may not be in order of worst to least fearful, there is a definite “these are the big scary ones”, and “these are the lesser fears. My bet is that you haven’t come away from whatever part of this journey you’re on without collecting a few of your own along the way.
The one I don’t even like to think about
So my number one big bad guy fear is aging. I’m 55 years old and am cognizant that the years to come, should I survive them, will hold a poignant loss of autonomy. This is what awaits us all. My thyroid treatment has not been easy and I need T3 in my therapy. Without it I am unable to process information properly; my brain can’t track conversations or make decisions with ease. I am afraid a doctor will put me on T4 only and monitor my TSH to determine the quality of my life, without being aware of the nuances of TSH and no thyroid. I am afraid of being weak and sick and exhausted, constipated, slow in the brain, freezing cold, with all of my joints and muscles in pain. I’m terrified of getting old. The gut-wrenching truth is that I am not adverse to the notion of “checking out early”, should the need occur. I know, I know, I shouldn’t say that – let alone think it – but there’s my honest truth. For now, I’m enjoying some lovely days, as imperfect as they are, they are still quite full of life. I’m holding my own and able to go out for walks, and go camping, and work, cook, clean. Life is good indeed. I appreciate these days more than I could express.
Medication fears need their own category!
I am afraid of only getting a thirty day supply of my medication. During Covid, my pharmacy said I could only have thirty days. It scared me. I said, “it gives me anxiety to have only that much thyroid medication”, and explained that I have no thyroid and it’s life or death medication for me. I said that if I couldn’t get my three month supply I’d have to go to my doctor to get something for my anxiety. I got my prescription, but it really made me think about the reality that this medication is life-giving medicine and I believe that’s poorly understood. I think the thyroid is thought of as a thing that gets “sluggish” and you need to lose weight, and not given the magnitude of respect that the amazing organ deserves.
Then there’s the fear of medication shortages. Recently, Cytomel 25’s were unavailable for a long period of time (I don’t take 25mcg of Cytomel, but some people do). People had to turn to another brand, and boy do I know what it’s like to change brands of thyroid medication! I’m sure some of you do too – it can take a year or more to straighten out. And sometimes it just won’t work for you, which leads me to my next fear.
My medication stops working. What if it fails to work? It’s happened before with Synthroid for me. My TSH just kept climbing and my FT4 kept falling. Although it wasn’t tested, I guarantee my FT3 and total T3 fell as well, because that’s the natural drop in patients with no thyroid, and I was dead sick. Sick without options is a terrifying place to be. I haven’t exhausted all the thyroid medication brands but here in Canada, where I live, the choices are slim.
Body changes are frightening too
At the age of 22, my eyes were bulging because of thyroid eye disease (TED) due to Graves disease. I see photos of my young self and am so sad for that young woman. Self-conscious, brave, afraid. I see all of her. Gratefully, I no longer live with much effect in my eyes. A bit of a stare if you’re looking for it, eyes tending to dryness, but quite comfortable with a close to right dose of thyroid medication.
Afib – now there’s a boogeyman if I’ve ever heard of one. Some of you are living with it – how hard that must be! Heart issues can come with too much thyroid hormone as well as not enough. It feels more crucial for me to find a liveable dose of thyroid hormone at this point in my life that is closer to conventional lab ranges for thyroid hormones, and for TSH. I feel like there’s good evidence to show there may be the least risk for me with that approach; provided I feel well, of course. I’ve been to the hospital because of my heart pounding from too much thyroid medication in the past, and if that’s a taste of what life could be like, I’m willing to try another approach to wellness to prevent this possibility.
I’m pretty sure brain changes could be included in here as well, since it’s part of the body. We tend to think of “the mind” as something apart from the body, but it’s an integrated component of the whole. Forgetting things, feeling like everything is coming at me all at once and I can’t cope, losing things, unable to focus, and depression or anxiety, or both. These are some of the effects on the brain of thyroid hormone; whether because of absence or excess. For me, this is also a result of too little T3 hormone and is evident when I’ve been on T4 only medication.
Absolutely I’m also afraid of gaining weight. I’ve been really heavy and it was miserable. Weight gain when you are powerless to stop it is terrifying. Nobody except someone who has gone through it can understand, and while your doctor may be trying to be helpful, all the fibre, steamed veggies and low fat food choices don’t make an impact on a body determined to pack it on because of medication issues. Last year I tried a higher T4 dose and gained 15 pounds with no change in anything else. Luckily, most of it has come back off, but I’m still just shy of 170lbs. I think weight and thyroid is just a reality for many of us.
Commitments and socializing
It kind of sucks, but it’s true. Commitments are scary because it’s really hard for me to back out of them even if I’m unwell. I take commitment seriously, I’m an on-time person, you can count on me type, and needing to say I can’t do something after I’ve agreed to it is tough on me. I feel guilty. Because I’m not sure how I might feel physically in the future, because a commitment is usually for a future date, it’s more comfortable to live small and non-committal. My life functions really well on a predictable level of energy input and output. Things out of the norm can rock me a little. That’s my reality.
Socializing can wear me out easily, although I do enjoy it. Afterward, I need to retreat to my “recharging station”, which is my home and quiet space. The only thing about socializing that scares me is the planning in advance. What if I don’t feel well? That’s always a possibility.
Symptoms returning or getting worse
In my final days on Synthroid I had acid reflux that was uncontrollable. Although my therapy with T3 was imperfect, the addition of T3 changed that and I hadn’t had acid reflux in about 15 years when an attempt to try T4 only again brought it back with a vengeance. I had mistakenly believed that it was gone, and that my health interventions of gluten free and alcohol free had corrected the problem entirely. Wrong! I now have it under control again with a lower T4 dose and some T3. I’m always watchful for it at this point and it scares me to know how close it lies under the surface.
I’ve been diagnosed with MS but sometimes I think “are we sure about that?”. My neurological symptoms are mitigated by, and exacerbated by, my thyroid dose. I have peripheral neuropathy, most noticeable in my arms that showed up when I tried T4 only in a dose of 87.5mcg Eltroxin two years ago, that left me with a TSH of 2.2, an FT4 of 38%, with an FT3 of 25% of the range (see Kathy’s post about percentage of range if you need to understand what that means). My arms started going numb, and I thought it was because of antibiotics I was taking – wrong! Wooziness, dizziness, numbness, parasthesia (which can be sensations like burning, prickling, biting) are all neurological symptoms that also have thyroid in common. I also get sensations in the right side of my face and my right eye can feel weird and droopy. Sometimes my eyelid has developed twitching. Having these symptoms return is a nightmare I don’t want to experience, although I have had more minor varieties of them come and go frequently. They are un-nerving, regardless of the severity.
I’m sure there are more. This list isn’t all of them but it covers some of the “biggies” for me. We would love to hear from you in sharing yours too 🙂
A few links to resources I found:
Thyroid Eye Disease (TED)
https://www.endocrine.org/patient-engagement/endocrine-library/thyroid-eye-disease
Surgery for TED at the Mayo Clinic
https://www.mayoclinic.org/departments-centers/thyroid-eye-disease-clinic/overview/ovc-20503926
Afib & Thyroid
I like this article. It’s easy to read and I think it does a good job of explaining the connection between hyperthyroidism and afib. Although hyperthyroidism is generally used to describe overproduction of thyroid hormones from a thyroid gland, too much thyroid hormone in the body from any source can cause afib.
This one also lists some signs of too much thyroid medication.
Thyroid hormone action which encompasses brain and weight issues
What I like about this resource is that it delves into some topics that are rarely found and then it gives the links to publications and there are loads of them!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4264616/
A search for “acid reflux and thyroid medication” reveals that it can occur from both too much and too little thyroid hormone, and I’ve experienced both.
A search for “neurological manifestations of thyroid disease” brought me the page below. It’s a good search term so feel free to use it because there are more pages that come up than this one.
I’ve been struggling with feeling well for over a year. I keep getting tested and she keep adjusting and I feel fine for a short time before the Shortness of breath comes back, chest tightness when laying down, forgetfulness, dizzy when standing up from kneeling, are a few to name. I am on Levothyroxine and liothyronine but after reading this I am wondering if maybe In would benefit from less t4 and more t3? It’s definitely something for me to think about. I’m going to try splitting my t3 in half and see what happens. Unfortunately I don’t see my endo again until Aug. Thanks for this website I am learning so much and it’s giving me hope that maybe I can feel normal again. Not sure I even know what that feels like. The endo normally listens to my concerns I’m hoping she is willing to try something different because the thought of being on the hint for another doctor terrifies me.
Hi Tawny
Thank you so much for taking the time to leave a comment. It sounds like you’re at least working with an open minded endo who is willing to explore dose combinations with you, so that’s a big win!
These symptoms are so frightening, and I can relate to your experience of changing doses and things seeming well for a while, and then having them come back.
I don’t know what dose of liothyronine you’re on, but splitting it into two doses can be a powerful help. My mom is on NDT (natural desiccated thyroid) and she used to take it all in the morning. I suggested she split her dose and she’s finding more stability that way.
Personally, I’m finding that a T3 reduction is working well for me. I have tried higher doses of T3 with lower T4 and suppressed TSH and that’s not been working for me. I’m working on a decent T4 dose with a small amount of T3 added and am feeling a lot of relief from symptoms I associated with not enough T3. I’m following along with Dr. Antonio Bianco (in the links above), and decided to give his dosing strategy a try, since mine hasn’t been working well. I too have felt relief when increasing T3, and then it sort of “bottoms out” and I feel unwell again. I’m hoping to end this cycle, or at least minimize it by following a different strategy.
I sure hope you and your endo can work through this together. And I hope you continue to follow along with me and Kathy as we walk this journey together. Once again, welcome 🙂
Darcey