Disclaimer: I’m sharing my experience here in hopes that it will inspire some of you. Be warned this is not me dishing medical advice—I am not a doc. Please talk to your doctor before making any medication, supplement, or dietary changes.
This is the second part of my healing update… you can find the first post here.
Like I wrote about earlier, I was feeling amazing last fall and winter, but eventually this started to unravel. Around New Year’s I started having some strange symptoms—the first thing I noticed was itchiness all over my neck that gradually intensified and spread to my upper arms and thighs. I started to have anxiety, and found it very difficult to sleep. Normally I have no problems getting at least 8 hours of uninterrupted sleep, but all of a sudden I started to have a hard time falling and staying asleep. I started waking up 2-3 times during the night, not being able to get back to sleep. Anyone who knows me well knows that when I start not sleeping, things get bad—quick!
At the time I chalked these symptoms up to stress with my pending book release—it seemed normal that I would be more anxious and have trouble sleeping with everything I had going on to make the book happen (I am a little ashamed to admit that I was working 50 hour weeks without weekends or time off to make it happen). I thought the itchiness was a histamine or SIBO issue, and I tried a low-histamine and low-FODMAP diet with no change in symptoms. Then I started to get really crazy about my bedtime routine—no technology after dark, amber tinted goggles, herbs that aid in sleep, 5-HTP, valerian, meditation—to no avail.
I continued on and generally let it slide because I was super busy/stressed and because I was not having my classic thyroid symptoms (hair loss, cold hands and feet, tingling in my extremities, fatigue). I actually did have the energy to keep charging through the 12 hour workdays I was putting myself through. One day though, I forgot to take my thyroid medication, and the strangest thing happened… I wasn’t itchy! I had been intensely itchy every day for the past six months. That was my first clue into why this was happening to me.
It doesn’t take an expert to figure out my thyroid medication dose was probably too high (yet, here I am, and it took me months…). I have been stable on the same dose of synthetic compounded medication for close to two years now, and I have been feeling good for so long I almost forgot how quickly things can change. I hadn’t been in to have my labs done or my medication dose looked over by my doctor in almost a year. Oops.
Once I figured out that I was probably overmedicated and needed to see my doctor, I ordered labs online and continued taking my medication for the next couple of days before my blood draw. I did this to make sure that the tests were an accurate reflection of my blood hormone levels. Once I was off the excess medication, my intense itchiness was gone. Also… I started sleeping! Like a baby. All of a sudden, I had no more anxiety, no problems falling or staying asleep. I felt like I won the lottery!
So where am I now? I’m working on reducing my dose of medication with my doctor—clearly things have changed in the past year and its time to readdress where I am at. While I don’t believe tracking antibodies are a good measure of success or failure when trying to gauge progress with Hashimoto’s (I think of them as more telling when the immune system is amped up), mine were the lowest they have ever been. All of my non-thyroid labs were stellar—I had the best iron levels ever, and this is an area I have historically struggled with a lot (I am sure eating liver pate once a week is helping in this department!). My homocysteine is normal, even though I am compound heterozygous for two MTHFR enzyme mutations.
The two health issues I am currently working on are not related to my autoimmunity (that I know of), which feels great. I have a mystery issue with my left ear, where I have pressure changes, lymphatic congestion, and occasionally balance problems and/or vertigo when it is really bad. After seeing countless doctors and practitioners about it, I think the issue is structural and craniosacral therapy has been very helpful. I’m also tracking my Factor V Leiden genetic mutation that causes me to be higher risk for blood clots—I’ve known about this my entire life because it runs in my family, but it becomes more important as I age and since I also have MTHFR enzyme mutations. So far all of my labs indicate that my blood is normal, but I am keeping tabs on it.
My next post will be about where I am at with my diet… stay tuned!
I am so happy to have found your website! I’m a mess too! ::::waving hello!::::: I am literally on day one of AIP because I’ve been struggling lately with my autoimmune issues and feel like I’m dragging lead under water. I can’t wait to read more about your story–you have a lot going on and I totally relate! 🙂
How serendipitous! I’m glad you were able to figure it out with one missed thyroid pill. I often wonder how many clues we are all given, but overlooked.
My hypotheses are long and slowly coming together, and I mean slowly, despite the newest Dr I met insisting that diet and stress will NOT change thyroid levels. I refuse to listen! I have the test results to prove that an AIP lifestyle has dramatically altered my TSH. I’m working on lowering my Armour levels now, too.
I know that stress is definitely playing into my thyroid issues right now, since my cortisol level was rather high and I have a lot going on. I know you said that your other levels were in check, but did you happen to notice an elevation in your cortisol levels or a drop since lowering your medication?
I kinda think that you were right to sum your original issues up to stress. I still wonder if it was the stress that was perhaps pushing your thyroid to become a bit too active or maybe the extra medication was making it harder to deal with the added stress? It seems to be the old chicken vs the egg.
Really, we all need to be listening to our gut when we feel things are off. I’m glad you were able to figure it out and are feeling better now!
I have the same mystery problems with my left ear… if you ever figure it out, please share! It’s one of my only symptoms I haven’t seen change in since going AIP. That and itchy legs.
Laura, I am almost positive mine is structural and not related to autoimmunity. It has responded really well to craniosacral therapy. Hope you find a solution soon!
Hi there! I can not thank you enough for all the work you do for us. I received your cookbook two days after I was diagnosed. Finding out just last week and 5 days AIP, I am very new to this. I am working my way through Dr. Kharrazian’s book. Reading your healing blog I am surprised to see you and so many others on medication. I am working with a chiropractic that I trust but still feel pretty alone in this journey. I just want to make sure I am not missing an important step. Thank you again for you beautiful website and amazing spirit
Why are you surprised to see people on medication? I don’t think of it as a failure in any way to heal completely from autoimmunity. Especially with something like thyroid hormone, its like taking a supplement to replace something that your body does not make effectively anymore. Quite different from something like pain medication or steroids.
Wishing you the best,
Very good to know:) Like I said, I’m very new to this and want to make sure I see all sides. Referring to it as a supplement definitely takes the stigma out of it for me. Thank you for your time.
Hi Mickey. How crazy.. I have the same weird thing with my left ear. I’ve had it on and off for years. I went to so many docs thinking it was full of fluid, and infected because the lymph nodes were swollen underneath my ear and it felt full. Every doc said it looked great and there was no fluid or infection. And they dismissed the enlarge node saying I was fighting something off. Since going AIP, It is so much better. The fullness is gone but occasionally my lymph nodes near my ear will get bigger but then go down the next day. I’ve been wondering if it’s not some undiagnosed co infection or EBV. I hope you figure out what’s going on with that and please share.
I wish you continued good health! 🙂 Tina
Hi Tina, I’ve had a similar experience and nothing close to an answer from a doctor. It has been pretty much under control lately after just 2 sessions of craniosacral therapy. We will see how long it lasts!
Hopefully you find some answers soon!
Same experience with itchy upper arms, anxiety and sleeplessness until I reduced my Armour dosage. First time I’ve been able to do that, and I’ve only been on AIP for a few weeks. Looks to me like you’ve progressed yet another step if your thyroid levels maintain this improvement. You are a pioneer in this field and I can’t thank you enough for sharing your experiences and knowledge!
So sorry you had to experience that, but I am happy you figured it out! I was so bummed it took me so long. Wishing you luck 🙂
I just wanted to post a Thank You for your work. I have a history of different irritations since childhood. I give my mom credit, she did everything she could with the tools she had to work with. I had severe left sided abdominal pain as a child into puberty, at which time I had severe abdominal pain. At age 14 “the fiery itchy rash” started on my face and I have been plagued with until very recently. Not healed, but definitely healing. Also, doctors kept working me up for STD’s starting at age 12. No 12 year old needs to have as many pelvics as I had. One Dr. went so far as to say “When she has babies, the problems will stop.” The dermatologists sold me shampoos, creams, and steroids. None worked. Finally, I told mom I wasn’t going back to the Dr. I would choose my own. I was 14. Well, the Dr. I chose kind of started me in the direction of foods being the problem. I have been gluten free for a long time as I noticed after eating bread I always became really, really sleepy. I progressed to the SCD diet which stopped the rectal bleeding from the Ulcerative Colitis (diagnosed when I chose my Dr. at age 14). Wasn’t quite enough. Your framework has helped me weed out other food intolerances. My face finally is not on fire and my ears don’t itch with me digging at them. The process takes awhile. Onions and garlic give me miserable hives. Horseradish and ginger have replaced them. Fruits are my treats now; for when company comes or we have birthday and holiday dinners.
I have a decorated honeydew melon for my birthday. Cauliflower is my potatoes and rice replacement, and btw tastes better in my opinion. Roasted cabbage makes a fab noodle substitute. I feed to company and people often remark on how fresh the food tastes and how good things smell. I am 57 years old. To be free of hives and to have stable thyroid tests after 43 years is such a blessing. Thank you!
Thank you for sharing your story Lisa! I am sorry you have endured so much from such a young age. I wish you continued healing and success on the Autoimmune Protocol.
Hi Mickey! These healing updates are so interesting and helpful. I’ve been on the protocol for several days, also adjusting for FODMAP and additional restrictions found by my ALCAT test. I have to admit, I feel kind of lousy. My digestion is totally off, totally fatigued and I’m fighting a sinus infection which isn’t getting any better. Did you have a digestive adjustment period at all when switching to AIP? Were there any unpleasant side effects that ultimately resolved? Just want to set reasonable expectations for myself since this is already really challenging.
Sorry I forgot to mention I’m also battling chronic yeast so I’ve had to remove anything fermented, per Sarah’s book. Full disclosure.
Hi Lea, that does not sound normal, and I would suggest finding a practitioner to help you troubleshoot your digestive issues. I’m not a big fan of overly restricted diets in lieu of working with a doctor and getting treatment for pathogens. If you are reacting to a lot of foods, I would suggest further testing and treatment. Good luck!
[…] This is the third part of my healing update… you can read part I here and part II here. […]
Hey I was wondering how you were doing with the lymphatic congestion? I am having that issue and I have seen a ton of docs with little help. I can’t find if you had success getting rid of it or if you were doing exercises or what? Thanks in advance.
I was wondering if you have found good resources on Factor V Leiden. I have the same blood disorder and have the heterozygous mutation. I want to eat a healthy green diet but not sure how much is safe. I don’t know how to have a healthy nutritionally dense diet without my greens! I would eat even more if I would know what’s safe. I’ve never had a blood clot and I am not on any blood thinning medication.
Hi Sarah! Unfortunately I can’t advise on Factor V Leiden nor do I have plans to write more in the future. It really is best for you to talk things over with your doctor or another medical professional who can advise based on your history. Good luck!