A Few Tips ~ for life without a thyroid

Darcey and I have been at this a long time. We are constantly learning and discovering new things that make our life a little bit easier. There are also some things we’ve just had to figure out for ourselves along the way. Continue reading to learn about a few things that we wish we would have known and done, at the beginning of our journey without a thyroid. Things that doctors don’t tell you when you are faced with this new “no thyroid” normal.

Keep track of your labs

Always save a copy of your labs. Either print a copy and keep track of them that way or transfer your values to a spread sheet. I have a lab sheet that I started in 2018 that I update with each new set of labs along with some short notes about how I’m feeling and other drugs I am taking at that time. You can see my lab sheet here.

Write down symptoms and doses

Let’s be honest, sometimes it’s hard to be objective when you are in the trenches. Writing symptom and dose notes keeps you honest and you can look back and see if anything is trending or has dropped off.

I took notes sporadically for the first 10 years, usually when I felt terrible. But for the past 5 years I have been pretty consistent in keeping up with symptoms and dose change notes. Darcey is the professional note keeper. She can tell you how she felt on 112 mcgs of Synthroid in 1994. Me, not so much but I wish I had started documenting my journey sooner.

Buy a weekly pill organizer and a good pill cutter

Make this part easy and load up your pill organizer once a week and be done with it. No more guessing if you took your meds. Also, while you are buying your pill organizer, grab a good pill cutter. I say a “good one” because, you get what you pay for and crushed pills are difficult to manage and cutting T3 (Cytomel, liothyronine) is a challenge to begin with.

Be consistent with ~

lab timing

Try to get your labs drawn around the same time each and every time. For me, that is when my lab opens at 7:00 am. I’m not saying it has to be 7:00 am or even in the morning, it can be any time that is convenient for you. Just make sure that you are consistent with your timing.

labs and last dose timing

Again, be consistent. Contrary to popular belief, there aren’t any hard and fast rules about dose and lab timing but there are ways to manipulate the outcome of your labs if you are on any type of T3 medication. Darcey and I both test 12 hours post dose consistently every time we have labs. That means we take our last dose of levothyroxine 24 hours before our blood draw and our last dose of T3 12 hours before.

brands/manufacturer of medication

If you take Synthroid (or any brand name) and it’s working for you, don’t change it. If you take generic levothyroxine, try to stick with the same manufacturer. I take generic Levo made by Mylan only and it’s noted in my file at the pharmacy. Sometimes you really have to be a watchdog and check your pills before you leave the pharmacy. They can and will switch manufacturers and not even tell you. The same goes for T3 meds. In the US we have generic (liothyronine) made by a few different companies, or name brand Cytomel. I found that I tolerated the Mayne liothyronine the best so I always stuck with that.

The sooner you start being consistent with all things thyroid related, the sooner you will be able to optimize your dose.

Listen to your body

I know that doctors will tell you that some of your symptoms aren’t thyroid related but we have found that most of the time they are. It really is crazy that thyroid levels can cause some whacky things to happen in our body. From Darcey’s ankle itch to my watery mouth, weird but thyroid related and both leave when our levels are optimized. So, if something feels off, it probably is. But I will also warn you, if you share all your bizarre symptoms with your doctor….. he probably will think your crazy.

It’s not just….. take a pill everyday (monitor changes)

I am sorry to say that it isn’t as simple as just taking a pill everyday for the rest of your life. That’s what we are told but unfortunately it isn’t true. For me, at first it was that simple but like everything else, my body changed. As our bodies change (pregnancy, peri-menopause, menopause, weight gain/loss, other diseases, aging etc.) so does our hormone requirements. After thyroid loss we don’t have the ability to roll with the natural ebb and flow of hormones throughout our life, so we have to be mindful of adjustments in our medication for every aging milestone and body size shift. So, if you have some life changes happening, monitor your symptoms and if needed get labs. Your thyroid medication requirements may have changed.

Know your thyroid medication options

There are many and they all have pros and cons. Read up on them and don’t be afraid to ask your doctor about them. When I say “read up on them” I mean from a reliable source like Dr. Christianson, or Dr Childs. They both have articles that explain your options. Also, please be aware of certain thyroid Facebook groups that will tell you that Synthroid is garbage and Armour is the best and only med to take. Both are not true, they all work for some people and you just have to find your med that works the best with your body.

Be careful WHO you are taking medical advice from

For the love of all things holy….. please don’t put your health in the hands of big mouth Betty in your thyroid Facebook group! She is NOT a doctor I assure you. We cringe when see people dispensing medical advice on Facebook. It is dangerous! And they are always very assertive and sure that you need – at least 25 mcgs of T3, or only Armour will get you well, or Synthroid is crap and on and on. Everyone is different in their medication needs and some of the thyroid dosing internet myths are terrifying. Please stick with information that is backed by science and/or a medical professional.

Don’t hate on your doctor

Endocrinologist, family physician, internist, whom ever you click with is your best choice. Is your doctor going to know everything about your thyroid issues or lack of? Probably not, but you can learn together, and you want someone who is willing to do that with you. Please remember that thyroid treatments are changing rapidly right now and some physicians haven’t caught up, but most are willing to learn. Darcey also has written a post about helping your doctor help you here. I personally see an internist MD and have only seen my endo three times in 30 years. I realize that I am lucky, my doctor is very open to trying different meds and listening to my concerns, but he also trusts that I won’t do anything harmful (like listen to big mouth Betty on Facebook and take 25 mcgs of T3) 🙂 .

If you have a no thyroid tip to share, please comment below. We’d love to hear from you!