Managing Graves Autoimmunity

Advice and steps to take once you've recieved a diagnosis

This page is for those who want a step by step guide to managing Graves and finding steps towards remission. I was diagnosed in 2018 and thought it would go away if I just got "healthier". I wish I had done more research and knew what to do and in what order.

I hope you will find the information below helpful. If you would like to work with me through my health coach or fitness programs, I'm here for it.

So you got a Graves diagnosis?

Do this first:

(This is SO important)

Buy a notebook/journal and create these categories:

4 pages Monthly:

Page 1: Symptoms

Page 2: Lab results. Medication and doses you are currently taking

Page 3: Diet/Lifestyle/Supplement changes

Page 4: Improvements/wins & setbacks

Charting all of this is SUPER helpful

Why?

⭐️ You’ll notice when something is helping

⭐️You’ll figure out your triggers

⭐️You will start to see patterns with lab tests and symptoms

⭐️You’ll figure out what medication dose is the Goldilocks amount

⭐️You will stay accountable and process this condition instead of trying to run or numb

Monitor Graves Symptoms

I wish I had known how important this was from day one. Maybe I was in denial that I wouldn’t need it long? Get a specific and separate notebook and start recording your symptoms and biometrics.

Have a spreadsheet to input your lab results over time.

Cross reference your symptoms with your lab results to see a pattern.

Having a deeper understanding on what “normal” is for you gives you the advantage over the condition. For example, my regular resting heart rate is 68-72 bpm. When I see it start to regularly climb to the high 70’s I know my thyroid is agitated. Time to:

A. REST

B. Take the intensity down in workouts

C. Potentially adjust my methimazole

D. etc etc

Having a heart rate monitor or any bio tracker can help you see theses patterns. I use an Oura Ring. The Oura also tells you your lowest overnight heart rate and when you reached that low - other signs that help to identify an overactive thyroid. There are many devices out there. It brings your awareness to your nervous system. I will elaborate more on why calming your nervous system is essential if you have Graves.

I also advise using an at home smart scale to monitor your water percentage (we have to HYDRATE so much with Graves) and your Muscle mass percentage.

We got this friends.

Remission- the holy grail

For anyone with a chronic illness, remission is the best case scenario. As soon as we get a diagnosis, we get to work trying to reverse it.

With Graves, there are so many root causes that it inevitably takes a perfect storm and a very full toxins bucket to tip us into full on thyroiditis. This could take decades. If we retrace our steps it could take us back to childhood and to our hereditary genetics. Though it is worth the investigation, and cleaning up our health is never a wasted effort, we should keep in mind this process may take a while.

Even when our lab numbers normalize with the help of pharma, we have to continue to manage our injured and accident prone thyroid for life.

Remission sounds so comforting, stable, and final. But it can also be a trap. We can’t let our past habits return, especially if they created this mess in the first place. Our thyroid will always be vulnerable, and we should look after it like a newborn baby.

I have hit remission twice. Regrettably I did not have the information to know to stay on medication for 5 years to make the remission stick. (See ATD post below). I created this page/group to maintain a space to hold our community together through the ups and downs, so we can stay the course to healing, managing, and even one day staying in REMISSION.

Low Dose ATD
(anti thyroid medication)

New study on Graves

Randomized Control Trial :Endocrine 2024

Risk of recurrence at the time of withdrawal of short- or long-term methimazole therapy in patients with Graves' hyperthyroidism: a randomized trial and a risk-scoring model.

Thankful for any study that can shed light on this unpredictable and misunderstood condition, Graves disease.

My endocrinologist referenced this study recently when she suggested that ATD (Antithyroid Drug) - in my case Methimazole- is safe for long term use, and that staying on this medication past the point of stable thyroid serum labs is NOW suggested to make remission stick.

This is the gist of the study:

A relapse-free condition was achieved in 83% of patients with Graves’ hyperthyroidism 84 months after discontinuing LT-MMI for 60 to 120 months, which could be predicted by some significant predictors in a simple risk-scoring system. Based on this research, age, sex, goiter grade, fT4, T3, TSH, and TRAb were significant predictors

of recurrence in long-term groups

Though none of us Graves survivors want to be medicated for life, we CAN see a predictable way INTO remission if we stay the course.

THIS IS GOOD NEWS.

Approach to Fitness with Graves

This is TRICKY business

Here are the reasons to be cautious :

---Over training is possibly a reason we have gotten here in the first place. Most likely your adrenal glands are not in great shape, so cannot be pushed to the max. Avoid long, repetitive cardiovascular Boot Camp type fitness.

---Our heart is very vulnerable at this time as our heart rate is elevated when we are not managed correctly with medication.

---We are losing muscle when our T3 is sending our metabolism through the roof. When we are losing weight, our body is literally dismantling our muscle to use for fuel.

My suggestions:

Make sure you are monitoring your heart, health and biometrics as well as your muscle mass.
Learn to listen to your body and find a balance between restorative movement and fitness.
Only gentle movement like stretching and walking if your heart rate is elevated.
If your heart rate is managed:
- weight train three times a week
- include once to twice a week a restorative practice like Pilates or yoga
If you have chronic stress in your life, make sure that you find a daily nervous system balancing practice that works for you. I will post more ideas on this in the future.
Find a workout buddy to stay accountable and make this time more fun.

Top Lifestyle Changes to Support your Thyroid

These are your first priority. Once you have these dialed in (staying consistent with these habits for at least one month) you can add the second tier habits

HYDRATE. Drink at LEAST half your body weight in ounces of CLEAN filtered water. You will have to get extra minerals including 200mg Selenium every day. You can get this through mineral salt, an electrolyte mix (without artificial additives) or a mineral solution.

REST. SLEEP. Your body is working so hard right now and needs recovery time. 8-10 hours with Graves. Quality uninterrupted sleep. No screens 2 hours before bed. Only dim lighting 2 hours before bed. I highly suggest reading something (unstressful) by orange light before bed. Knocks me out every time. Try to sleep on natural fiber sheets.

EAT CLEAN. Wean yourself off gluten, dairy, processed foods and grains, alcohol, sugar, and excessive caffeine.If you have digestive issues you may need to work with a functional nutritionist to clean up leaky gut. This is a primary driver of autoimmunity.

*This will take longer than a month and maybe even years to implement fully…

DETOX. If you can - or however much you can - remove yourself from toxic relationships, moldy apartments, clean up your health and beauty products by replacing toxic products with cleaner versions. Get rid of plastic food containers and replace with glass.

NO MORE PLASTIC WATER BOTTLES. Get glass or stainless steel (make sure it’s not coated in BPA, BPS, etc).

SEE YOUR DENTIST. If your oral health ain’t great, make some changes. See a dentist, get your dental routine on point. I highly suggest oil pulling 2-3x week to keep bad bacteria out. Always wear the thyroid collar when doing X-rays, and if limit the amount you get when possible.

PRACTICE DEEP BREATHING EVERY DAY. Meditate in whatever way works for you. A slow mindful walk in the woods, listening to ambient drone music and practicing diaphragmatic breath, traditional meditation…anything that calms you down. It’s probably our most underutilized and FREE way to heal ourselves.