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Graves is back.
I started writing this after today’s appointment with my endocrinologist. Clutching my prescriptions for the usual blood tests and thyroid suppressing drugs, I made my way home. My mind was somewhat blank, vaguely aware of the freshly fallen snow and ice crunching beneath my boots on this brisk Friday morning. Autoimmune disease relapse was not supposed to be part of Friday’s plans.
I had been suspecting that Graves’ disease had made its reappearance for a while now, when I started feeling mild vibrations throughout my body, my heart beating wildly after moving faster than usual, and difficulty concentrating or settling down to a task for extended periods of time.
Getting impatient with my children and getting easily irritated, with mounting anger and the irresistible urge to break something (the practical and zen side of me reminds me of the mess thereafter and so I stop…). My husband even started shopping for punching bags online. The inability to fall asleep at night or take naps easily, and the heavy feeling of fatigue upon awakening in the morning.
The opposite of hypothyroidism
Those afflicted with Graves’ often feel like they have drunk far too much coffee morning and night, even if they hadn’t drunk a single drop. You want to slow down a bit, but you simply cannot. You get frustrated, because your hands are trembling so finely that you take several tries to get photos in focus. Many a time I lost precious memories of my children because I could not take a proper photo. With Graves’ you feel like an idling high-performance luxury car, with too much horsepower. Sexy for automobiles, not so much for humans.
Nonetheless I was stubbornly clinging on to the idea that I was in remission, that it was gone, that it wouldn’t come back again. My test results proved otherwise. Deep down I knew it was because I had gotten complacent.
I wasn’t listening to my body
I still cook and eat AIP meals on a daily basis. Though I still piled my plate with vegetables, my focus on nutritious offal was practically non-existent. I gave myself the excuse that my husband and kids did not like offal, or that I could not find or afford high-quality offal. I did too many reintroductions far too rapidly while I was on vacation. I stayed pretty strict for most of my vacation but somehow adopted a lackadaisical attitude during the last few days of our stay. I was pretty reckless. I ate rice. I even ate soy and peanuts. I knew I was going too fast, that it wasn’t how reintroductions were done, but my mind defiantly said it was my birthright as a Chinese. It just felt so good and I didn’t even get immediate digestive issues.
Bloating and heaviness in the stomach are usually the first signs of an unsuccessful reintroduction for me. One day back in Canada, I ordered a tea latte with Western-style soy milk just because I saw someone else enjoying it. What was I thinking, seriously?! Big mistake. My body revolted, and I felt like crap for the rest of the day. I stopped all those reintroductions ever since. In case you ever eat something that you regret, pick yourself up and move on. There is no point beating yourself over it.
It also took me more than a week to recover from jet lag, which had never happened before. My sleep was a mess, and my stress management was shoddy. I realise now that my body was sending me a signal: Hey, I need some love and care.
At the hospital, my doctor sighed when he told me my latest results. We had been charting my Thyroid Stimulating Hormone (THS), T3 and T4 levels and it was definitely hyperthyroid. Graves’ disease had relapsed. This would be the fifth cycle of thyroid suppressing drug I would be commencing on – Tapazole is the drug of choice in my treatment. On the upside this was by far the longest period (about 2 years) that I have gone without medication. I attribute it to being on the AIP.
Once again he brought up the idea of Radioactive Iodine Ablation (RAI). I had refused this the previous times he mentioned it, and this time as he explained the benefits of RAI, I simply nodded politely. In my head I was simply thinking: so I become hypothyroid instead, get treated with Synthroid, and stop burdening the healthcare system with my frequent tests and consultations.
Which was the case. He said it would be easier to manage compared to an overactive thyroid, and that I would require less frequent blood tests and checkups. No need for roller coaster thyroid hormone levels, it would be all well and stable and I would probably be hypothyroid and popping man-made thyroid hormones for the rest of my life. Previous attempts to suggest Low Dose Naltrexone (LDN) were fruitless.
Doing RAI sounds so easy in theory. Sometimes I wonder if it is even so. I know of people who have undergone RAI and gone on to live their life. No need for elimination diets, no need for special protocols. Part of me is envious, part of me is thinking ‘life is unfair’. Another part of me is telling myself ‘you do not go down that road of no return’. RAI is permanent and forever. I don’t want to regret destroying my thyroid gland. Every individual is unique. I feel unnerved by the thought of having to stay away from my children for a period of time due to the radioactivity. What if RAI isn’t successful? What’s going to happen to all the TSH receptor antibodies then? What if another autoimmune disease rears its head if I don’t keep things in check?
I’m so tired right now. Just want to sleep but yet racing inside. Day in the life of a woman with Graves’ disease, right? Can you relate to how I feel?
Moving forward
Here’s my plan: to return to the sanctuary that is the healing Paleo Autoimmune Protocol. Embrace it fully, tackle my sleep issues (starting by going to bed earlier), refine stress management, ensure that I am consuming enough nutrients. Eat more offal. Add more movement and gentle exercise into my daily life. Re-read The Paleo Approach. Re-acquaint myself with Reintroducing Foods on the Paleo Autoimmune Protocol. Cut the sweet stuff. Stop trying to convince myself that I have reintroduced chocolate or coffee successfully. I get such bad palpitations after eating chocolate, that I can barely stop myself from shaking. Last but not least, remind myself to be a respectful parent as it means so much to me and my family.
I also need to seek help. I need to find a functional doctor or endocrinologist who will not only treat my symptoms, but my whole body. Even if it means relocating.
To my readers who have been wondering about the lack of new recipe posts, I promise I’ll get back to it once I kick Graves’ @ss. It was not easy for me to write this, but I’m glad I did. I’ll go brainstorm and create some tasty new offal recipes once I feel better. In the mean time, my heart, mind, and soul need a honeymoon, i.e. a lot of self-love…
Self love is what you do need. Can’t take care of anyone else if you are not taking care of you. Best wishes!
Yes, absolutely right! Just like those emergency procedure demonstrations on board airplanes – attend to yourself before attending to others. Thanks for your kind words!
I know what you are going through Dora. You need a chirporactic physician or a functional medicine Doctor. I went to so many conventional doctors n specialists n all they know to do was prescribe me a pill for my sickness n I keep telling them I need to find out the root cause of my disease not deal with the symptoms with a pill. I even told them what I suspected was the cause but they all think I was crazy until a friend of mine recommended me to see a chiropractor physician who is a functional Doctor n she found the root cause of my AI on the first visit when I explained all I was experiencing to her. I took her advice did all that I need to do n today I am on the road of recovery. I am sure there is chiropractors, functional doctors or naturopath doctors in Quebec. This is truly your answer. I have been there n now recovering. Also do a lot of research. Functional doctors will help us get to the root n stop the disease but conventional Doc’s will deal with the symptoms. Don’t do RAI until it is the very very last resort but with functional doctors RAI is never the answer. They will work with you through nutrition, save medication, meditation, etc to heal your body. Our bodies are very amazing when given the right stuff it will heal itself. There is great hope for you, Dora! I know cos’ I’ve been there n now on the road to full recovery. Be encouraged.
Thanks for understanding, Immie. It is a tough road, finding a functional doctor here. There are none that I know of in the city region, so I’m going to have to cast my search elsewhere. I’m so glad that you are on the road to full recovery!
I am not sure how far you live from montreal but my sis goes to a naturopath doc. If not too far n if interested I can give you her name. I will ask around my friends might know of a functional or naturopath doc even chiropractors are awesome. Keep up the faith there is great hope for you. I know you will be on the road to full recovery as well once you find the right doc to help you. My sis-in-law is a dermatologist n I will ask her. She lives in Quebec.
That would be great, Immie. Do you know if her naturopath is knowledgeable of AIP? The ones I have seen still advocate grain consumption. Could you send me the details to dora [at] provincialpaleo [dot] com? Thank you!
I am on the search for a functional doc too. I may have finally found her & don’t have to relocate. I found out from my many referrals that the closest most effective functional doc near us, which is 2 hours away, requires the first appointment in person but the rest can be by skype, phone and email. It may be a possibility for you too. If you call one you have been referred to, ask about alternative ways of meeting.
My heart goes out to you Dora. And I fully understand. My RA is at the worst it has ever been and that’s with me doing everything right for almost 19 months now. Don’t beat yourself up, instead accept where you are which you have done with your plan and take one day at a time. Have yourself a self -love night – mine’s a Tuesday when the bath is filled with warm water, Epsom salts and essential oil. The beeswax candles are lit, the door is closed from everyone (including the cats – I have one that sits on the edge playing with the bath water!) and plug into either the Calm app or The Honest Guys meditation. Does wonders. And find that functional doctor. And don’t feel pressured to create for us, create for yourself first. ❤️
I’m sorry to hear about your RA flare, Amanda. It must be difficult. Take one day at a time, and focus on the positive side, right? Your self-love night sounds lovely! I don’t do luxurious baths as often as I should (tend to get lazy to scrub the bath out before and after, oh dear). I have to go check that app out. Take care of yourself, hope you can get through your flare in due time <3.
Sending you buckets of heartfelt encouragement, Dora. I truly believe you can do it. Celebrate your two years and say, “I’ll do it again!”
Celebrate with a nice kombucha bubbly, right?! Thanks, Erin. 🙂
What a beautifully honest and vulnerable post, Dora. This type of sharing makes the entire AIP community feel less alone. May the medication work quickly, and the AIP nourish you deeply. Sending gentle hugs your way.
Thanks, Eileen, for your support. I’ve been having stubborn eczema patches on my hands that would flare up at the first sign of stress and they are fading already! It’s a sign that my body is starting to heal.
Dora, quite simply I was blown away by your story. Your vulnerability and optimism are inspiring, I couldn’t stop reading. I know you’ll reclaim your health, you have all the tools necessary my friend as well as a fantastic mindset! I’ll be cheering you on from the sidelines 🙂
Thank you, Rory. It’s deeply private thoughts but somehow I knew I had to share it with others in the AI community as I felt it could help others who could probably relate. It felt cathartic writing my thoughts out!
Thank you for sharing this. I relapsed off of AIP, and eventually off of Paleo, after a visit home where my mother threw everything from my list of “do not eats” into one soup! I sort of threw my hands up at that point, and as I was still on methimazole I haven’t noticed an immediate relapse. This was a very encouraging post to read because it has convinced me to A) stop making excuses and get back on the #jerf #paleo bandwagon at the very least!, and B) to definitely avoid nightshades. I know my body can’t do spices in the nightshade family, and doesn’t enjoy tomatoes, and I need to move past the denial. I had really gotten to a great place mentally and emotionally with eating AIP — that was such a journey, to move past the “I can’t have all these things” to the “I can enjoy all these new things now” — and now I need to reclaim that confidence. Your blog is one of my favorites, I wish you well!
It’s tough, isn’t it? Sometimes the denial is a bigger stumbling block than the offending foods! No matter what, love yourself for what you do. I hope you can reclaim the confidence that you seek. Thanks for taking the time to comment, and good luck with your healing journey!
I’m so glad that I have stumbled across this. I feel the exact same way however I’m grasping for strength. 3 years I was diagnosed and discover the paleo lifestyle. After going into remission after a year…I’m now having a relapse. I’m guessing because of high stress levels and coming down with strep sent me off the edge. I’d love to hear how you are doing now.
Strep is a nasty one. I caught it over a month back and I’m still trying to get back to my ‘normal’ level. I hope you can ride through your relapse and feel better soon!
Dora, your blog has been an inspiration ever since my last Graves’ relapse. It was then that I discovered AIP and how my thyroid problems were actually autoimmune problems. A lightbulb went on, and I discovered your blog about a month ago.
Your post was so comforting to me, as I could identify with every one of the symptoms you went through. I know it must not have been easy to share it, so thank you so much. I too, have decided to look for a functional medicine doctor who can help me overcome Graves. I am also reluctant to go through with RAI.
I love all your recipes and I actually treat them as reading material, enjoying them vicariously, and hopefully will be trying many of them out soon. I guess being a Malaysian, I enjoy your blog even more and can’t wait to make kuih bingka and other Asian treats! Wishing you joy and success on the journey to healing.
Hi Wye Yi, thanks for taking the time to read my blog! Having a relapse is certainly no fun at all. I don’t know if you’re living in Malaysia or elsewhere, but functional medicine doctors willing to conduct Skype consultations can be found around the world. Also thank you for taking the time to comment, it means a lot to me. Glad you enjoy my recipes! Good luck on your healing journey as well!