Thyroid Update: Wilson’s Syndrome Protocol

I know everyone isn’t interested in my hormone experiments, so if you’re less than enthralled by tales of T4 and TSH, skip this one. For my #FUThyroid friends, welcome! To get up to speed, you might want to read this post about my previous status in April and this Thyroid Update from July 29 before continuing on to today’s installment. (Need more context? You can read all of my previous posts about my thyroid adventures here.)

Before I get into my details, I think it’s worth repeating that all of this is about my situation. I’m glad to share my experiences with you, but we’re all different, especially regarding hormones and how our bodies behave. Remember: you are a special, special snowflake. If you think you’re experiencing something similar to me, or you’re curious about what you read here, please consult an expert. The only things on which I’m an expert are myself and how to pet Smudge’s belly without waking her up.

Update on Wilson’s Syndrome Protocol

For the past 10 days, I’ve been following Wilson’s Syndrome Protocol. That means I’m taking T3 only, twice a day, exactly 12 hours apart — and I’m measuring my temperature and my heart rate three times every day. It’s not been as bad as I feared it might be. My energy is about where it was before I started monkeying around, although I do have tiredness kind of attack me once in a while.

I checked in with Dr. Sebring yesterday, and I’m deviating from the strict Wilson’s Protocol a little bit. Right now, I’m at the highest dose of T3 included in the plan and according to the Protocol, I would start ramping down the dosage again. Instead, I’m staying at this level of T3 for 5 more days, then starting the ramp down. My average temperature is hovering around 98.6 for the first time EVER in my life, and my heart rate is normal — usually between 60 and 70, both of which are very good signs.

When this little experiment is over, I’m going to give Armour Thyroid (natural thyroid blend of T4 and T3) a try, instead of the synthetic Synthroid and Cytomel I was taking previously. Some people feel better and manage their weight better on Armour, so I’m giving it a shot.

The self experimentation is going to continue for the near future, and I’m fighting desperately with myself to be patient about it. Ah, Patience. Why must you torture me so?

The Whole30, Meditation, Walking, Running Intervals, Lifting

While I play around with my thryoid hormones, it feels more important than ever to control as many variables as I can, which is why I’m being such a journaling nerd during my Whole30. Tracking food, mood, sleep, and activity is really important so I can look for how one thing might be affecting another — and I’m loving my new workout schedule. Walking and kundalini are welcome parts of my week, strength training feels totally natural, and the running intervals I get to do once or twice a week feel like a treat.

I really don’t know if the amount of calories I’m eating is right for my body, so in September, I’m going to the Fitness Institute of Texas to have my resting metabolic rate (RMR) tested. (In 2009, I had a DEXA body fat scan done, too.) The RMR test should help me estimate how many calories I need to support my activity level and lose weight. Yes, losing weight is much more complicated than calories in/calories out, but understanding what my metabolism is doing will help me better estimate how many calories I need. Right now, I’m just eating as much as I always have, based on mushing together guidelines from Weight Watchers, the Zone, the Whole30 Success Guide, and my imagination — which puts me between 1400-1500 calories a day. I’m excited to see how close to “right” that number is.

So, there you have it. No answers yet, but at least I have a path before me that I can walk (or stomp on) to see where I end up. As Dave can attest, I like to meander down side paths and twisting walkways, so I guess the answer for now is to try to embrace the adventure of exploration.

 

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Comments

  • Julie says:

    hey – Arrrrghhhh….all these numbers make me want to whip out my blood tests and compare – but I can’t because all I know is I’m in for a ride come Sept 20 when I get a hemithyroidectomy and isthmusectomy for suspected – but not confirmed! – thyroid cancer. ugh. So I’m going to be following you very closely and when I’m through this hell and everything is calm and I can trust my body again or at least I know I’m where I’m going to be – I’ll look a little closer. Right now I’m too busy googling thyroid cancer – bad idea!!! So frustrating to know there is a little flap of an organ responsible for such big stuff that they pull out so readily. The mental stress of this (esp as a trainer) is driving me completely nuts. I’m working with a trainer and getting strong as possible to prepare for post surgery thyroid limbo chaos. Kudos to you for digging deeper and taking charge – endos are, in general, infuriating with their numbers and ranges!! Like the guy on Saturday Night Live- just FIX IT! Good luck!

    • Mel says:

      Hey, Julie! I’m hoping that you don’t have cancer, but if you do, you will totally be OK. When I had my big ol’ nodule, they thought it might be cancer — which is why they took it out. It was too big for a needle biopsy. It wasn’t cancer, but there was only one way to find out. Sigh.

      Anyway, thyroid cancer is very manageable, as you probably know from your research. You’re going to be just fine.

      As for the post surgery stuff, it can be tough. Please feel free to email me if yo have any questions or need support. My docs didn’t start me on thyroid hormones right away after my surgery, and that definitely made my problems worse. You might have a smoother experience than I did if you start working with an endocrinologist right away after your surgery.

      My surgeon thought my half-thyroid might continue to work. FAIL! So it took months to get me into the right hormone treatment.

      Anyway. I’m here for you. I don’t have lots of answers, but I have tons of empathy, and I’m a good listener.

    • Melissa says:

      Julie –

      I had thyroidectomy ~6yrs ago for thyca, and had been hypo/Hashis for 7 yrs before that.

      suggest these resources for you:
      essential book Thyroid Cancer: A Guide for Patients (ed. Van Nostrand) – get 2010 edition
      info/support:
      thyca.org (gr8 info esp. if you wind up needing temporary low-iodine diet, local groups)
      thyroid.about.com – forums are great for support

      I did the same “get in the best shape I can” pre-surgery (I had about a month notice) and I think it helped – not so much w/ the no thyroid as with getting thru surgery/recovery. One thing I found helpful was to pay attention to when I was using my neck muscles (I think one day at home I even put a bandaid or surgical tape on my neck where I thought the incision woudl be and tried to notice when I felt it pull) – for example, I discovered that I often used neck muscles to help me sit up from prone position. So I worked on pilates core exercises which helped me be strong enough to sit up w/o using neck. That made huge difference esp in hospital post-surgery. You won’t be able to turn your head to the sides well for a while (stitches) and that will restrict your driving.

      #1 tip for minimizing any scar – sunblock. I used bullfrog stick on the scar as soon as doc said it was ok and it also helps keep it moisturized (b4 that, I had antibiotic ointment for area).

      That’s all my brain can come up w/ right now, but post more if you need to – I’ve subscribed to comments for the post.

      • Julie says:

        Melissa – love that you wore a band-aid on your neck to simulate the experience. That is one of my major concerns – I lift heavy things often and I was concerned about that – but I could see how surprising it will be to see all the movement patterns affected by a gash in your neck. I’m going to try that.

        Mel – Yes – my concern is def post-surgery. I *think* I am fortunate that I am already on a low dose of synthroid and I am working with an endo who has made it sound as though I’ll just up my dose right out of surgery. Of course, if it is cancer, it sounds like 1) I’ll likely need to have the other half out and 2) I can’t be on any thyroid meds if I need the radioactive iodine.

        The funny thing is – my surgeon was like why did you get a biopsy on something so tiny – it wasn’t even 1 cm. My endo assured me the guy she was sending me too for the biopsy would send me home if it had regressed under 1cm without performing the biopsy – I guess on my last ultrasound it was just over 1cm and that’s why she sent me for a biopsy. Sure enough – the measurements from the biopsy were under 1cm. AND the dude was digging around in there trying to pop it and I read if they mess around too much it looks like hell on the slide – in the back of my mind, I really have a feeling this is what happened which is why I went for the hemi and not the full like my endo recommended. At the end of the biopsy procedure, the doctor actually bent down and whispered in my ear – “you got nothing to worry about, it’s benign.” What a dick to say that to someone getting a biopsy – who was he, OZ?! Anyway – when the surgeon told me it wasn’t even a cm, I’m like- OK, I’ll be going then. And he said – nope – now that we know what we know you have to do something about it.

        I’m feeling great and the timing really stinks. I know I’m not going to feel the same and things are going to change. I’m just getting into a groove with my health – I know what to do to stay fit, healthy, feeling good…I don’t want to pay attention anymore – I want to coast. I’ve been pedaling hard for years and I was just hitting that downward slope, getting ready to enjoy the ride and now this. WAh WAH WAH! I’m depressing myself.

        Anyway, thanks for the support! Thanks for letting me rant. Thankfully I’ve got my own blog to clog with this stuff! 😉

        All the book and site recs are def going on my list – there are some very miserable thyroid messed-up people out there that get off on telling their horrible stories and it is reassuring to see a community of active, healthy people discussing it in a more intelligent, proactive – not whiny – way here.

    • Heidi says:

      Julie,

      I hope this message isn’t posted too late. The latest thyroid cancer testing, recommended by the American Thyroid Association,is Gene Expression Classifier, e.g. the GEC, a much better and a more accurate testing than the FNA alone, accuracy between 80-92%, comparing to the standard testing, with only 40-60 accuracy used since 1970.
      Please visit:Afirma.com/press-room/details. The Afirma Thyroid FNA Analysis, offered by Veracyte,as of March 2013, won over UnitedHealthCare with Thyroid Cancer Diagnostic legal matter. Website: economy.com/san-Francisco/2013/03/08. Their e-mail.
      support@veracyte.com

      I wish you the best,

      Heidi

  • Sharra says:

    Hey Mel ~ I love your thyroid updates! I’ve been dealing with a jankety (that’s the best way to describe mine!) thyroid for years. After being sent to an endocrinologist and him running some extra blood work ultra sounding my thyroid and confirming that I have Hashimoto’s, we switched my thyroid meds to Armour. This was last August during my first whole 30 (I was 85 – 90% paleo before). I saw an quick drop in weight but since the fall I’ve stalled out. I’ve tried upping my Crossfit workouts, running more, lifting more, strict whole 30, no fruit for a month,etc. You name it I’ve tried it! The PA I saw last when they checked my thyroid told me to keep my calories at 1200 and workout less. I looked at her like she was crazy! There may have been expletives!!

    Anyway, they check it again next month and will ultrasound it again so we will see where it’s at. But I really do like hearing about your thyroid updates…very interesting for those with jankety thyroids!!

    • Mel says:

      I’m glad you’re finding my posts helpful! I wasn’t sure at first if anybody wanted to hear my woes, but now that we’re all swapping stories, I’m so glad I put these details out in the world. Thank YOU for joining the conversation.

      I’m excited to try Armour, especially since I’ve got my diet so dialed in and my workouts on track. It is RIDICULOUS to drop down to 1200 calories. Holy crow! I would start eating the furniture 😉

      Good luck next month — let us know how it goes, OK?

      And I LOVE “jankety.” So appropriate!

  • Tom R. says:

    I see. I like a plan, and you obviously have one (not surprising). Please remember it is hard to hit every goal at one time. As you know getting stronger and losing weight is not easy, not impossible, but not easy. Throw in a dinked up thyroid and a little stress, and you have set the bar high. Looking forward to seeing you succeed on this one and certainly rooting for you.

    • Mel says:

      You are so sweet with your comments and looking out for me! Thank you for the support!

      I know it’s a long and tough road, but there’s really no alternative, right? I refuse to give up on having my body behave and look its best, so I just have to keep trying. In the interim, lifting heavy stuff feels GREAT, and along the way, I get to share what I’m learning so maybe other people can benefit.

      Plus, I’ve always been super impatient, and this is good patience training 😉

  • Dana says:

    98.6! Wow. That has eluded me thus far. Thanks for letting us thy-curious folks peek over your shoulder during this process. It’s definitely giving me some questions to pursue with my doc!

  • Katherine Sadler says:

    Hiya from Australia!

    I don’t have too much of a problem with my thyroid at the moment but it definitely up and quit when I got Chronic Fatigue in 2008.

    I’ve been on T3 since then. In much higher doses than Wilson’s protocol. First specialist I saw had me on 15mcg T3 (compounded) then up to 50mcg/100mcg/150/mcg. Definitely check temp and heart rate but I think for someone with a health thyroid they produce something like 150mcg a day. A friend of mine doesn’t have a thyroid (removed due to cancer) and takes 150mcg T3 a day.

    150mcg is too high for me (fast heartbeat, sweaty palms etc, all symptoms of hyper-thyroid) 100mcg is okay, but i’ve found 50mcg is good.

    Don’t be afraid of T3 and Armour. Your body also needs certain nutrients to convert T4 into T3, if you don’t get them, you won’t make T3.

    I was also producing Reverse T3 for a while, when I had high cortisol levels in the middle of adrenal fatigue. Crazy days. Thankfully that’s gone now, due to taking high doses of T3 my body just reset itself.

    Complicated stuff hey? And very much left to the specialists on the fringe of conventional medicine. And expensive! An anti-ageing specialist can prescribe you straight T3 in Australia, not sure about USA. We’re not allowed to buy Armour Thyroid here though, but I’ve read a lot about it.

    Good luck!

    • Mel says:

      Totally complicated stuff! And annoying. Yeesh!

      My alterna-doc has said if Armour doesn’t work, we can try T3 only, so at least I have some options laid out in front of me if this plan doesn’t work.

      Thank you so much for sharing your experience. Good luck to you!

  • Torea Rodriguez says:

    Mel,

    Simply love the thyroid updates! My thyroid is malfunctioning now after I finally thought it was stable. And of course there seems to be so many different variables. Thanks for these updates. They’re helping me brainstorm possibilities to discuss with my doctors.

    • Mel says:

      I’m really glad my updates are helpful. I totally recommend the book The Thyroid Diet Revolution to get more ammunition for talking to your doctor, too. SUCH a helpful book. It gave me a lot of peace of mind. Good luck! Keep me posted on how you’re doing!

      • Torea Rodriguez says:

        Mel,

        Really this is all fantastic. You know my labs are good, rT3 is fine, etc… but I still feel “off” and in taking my temperature this past week, its a blessing if I can get to 97.8! Ive been as low as 96.2 so certainly more stuff is going on. Your posts have inspired me to track more things about my health and create a log for my doctors.

        I’ve just ordered the book, (and made some Sunshine Sauce to get some more sunshine in my happy days!) and look forward to reading it.

        I’ll keep you updated.

        In all that is “jankety” in life, Torea

        • Mel says:

          It’s SO hard when the numbers look “good” but you still feel a little off. Keeping a diary is a great way to have something to show the doc. And one piece of advice in that book that I thought was AWESOME: be very specific in describing symptoms and back them up with data. Like… instead of saying, “I have no energy” say “I sleep 8 hours every night, I meditate to manage my stress, and I don’t eat sugar, but I still feel like I need to take a nap at 2:00 every afternoon.”

          That shows the doc that you’re not whining, but actually know what you’re talking about 😉

          Good luck to you!

  • Melissa says:

    Thanks Mel for sharing! As a thyca survivor – no thyroid for 6 years now – (& Hashimoto’s before that), I am always interested in other folks’ experiences in optimizing and feeling best. Helps give me ideas. Waiting for results of last RT3. Some changes in TSH, t3, t4 #s in last bloodwork that may be related to stuff I take for GERD/ulcers/hiatal hernia. (so many meds, so many interactions!).

    Thanks to all for sharing!

    • Mel says:

      Thank YOU for joining the discussion. I’ve been without my thyroid for almost 4 years now, and I used to celebrate its “birthday” every November, but now I’m too mad at it 😉

      Stupid thyroid. Stupid, broke-ass, unreliable, needy, temperamental, motherfracking thyroid.

      Aaah. That felt great. Try it!

      • nicole says:

        well said. i am mad at my thyroid too. it is a gorgeous sunny day in alaska and i have so LITTLE energy today (thx thyroid) that I am NOT even sure i can fake energy for my kids. i am frustrated.grrrrrrr.

  • nicole says:

    http://www.well-women.com/armourthyroid.html
    well women guide to armour thyroid
    Hi Melissa,
    I wrote the other day about how good i felt on the armour thyroid but today am feeling bad again so I am doing someresearch and i wanted to ask you if your doctor tested your adrenal gland function prior to putting you on thyroid meds? i sent you the link,above, and in the article about women and thyroid(armour) it stipulates that prior to being put on armour people should first have their adrenals treated. the exact quote from this article is “thyroid hormone should never be administered to a patient with UNTREATED adrenal cortical insufficiency or untreated Thyrotoxicosis” just wondering if your adrenals were tested and treated first? i am feeling rather confusedright now. The whole article can be seen at the link I provided. I had four days of feeling super energized on the armour and today i am at an energy deficit. Not sure what tothink. thanks, Nicole in Alaska

    • Mel says:

      Thanks for the link — that’s great info to share.

      I’m currently taking a prescription for hydrocortisone that’s helping with my adrenal issues. All of those hormonal systems work together, so it’s important to pay attention to adrenal AND thyroid.

      One thing I try to remember that might help you: even before my thyroid woes, I sometimes had “off” days. That happens to everybody. I think we get so used to scrutinizing how we feel to determine in our habits/treatments are working, we forget that some days are just not great days, regardless of whether or not or prescriptions are right.

      So don’t give up on the Armour yet. Maybe it’s just an off day. Maybe your body is just adjusting.

      Hang in there!

      • nicole says:

        hi Melissa,
        i did some reading about armour thyroid this weekend and decided to just give my body a break. it is probably adjusting to the armour- i was just hoping i felt as good as i did and it would last. you know how that is. I have so much to do and so much I WANT to do in a day and sometimes i just have to lay down. the feeling i get isn’t a just push through it kind of feeling; it’s I have to lay down now. i don’t know if you or any of your reader’s ever feel that. I have always been super active though so it’s hard to accept this is how it is for a while. but I am hanging in there. I do feel hungrier too on the armour, just so you know, it tends to make you feel hungry- armour website also said that someitmes even though you are hungrier, you still lose weight. that was a positive bit of news. thanks again for your positive input. it is helpful.:)
        nicole

        • Mel says:

          Oh, Nicole! I *do* know what you mean about the fatigue. That’s been a difficult part of it for me, too, because you’re right: you can’t just “push through it” — you need to rest. It sucks!

          But this kind of up-and-down thing is typical when you’re adjusting to a new dose of thyroid hormones. It can take up to 3 months for things to sort themselves out, which is why most docs run blood tests every three months for a while, then cut back to 6 months when your dose seems correct.

          I know how difficult the whole process is. Treat yourself with kindness and compassion. If your best friend was exhausted because her medication wasn’t working properly, you’d give her a hug and send her off to bed with the recommendation that she enjoy her nap. Try to treat yourself in that same loving way.

          I’m sorry you’re feeling frustrated and disappointed. Feel free to come here and vent any time!

        • Torea Rodriguez says:

          Nicole,

          Its not just you! I am/was the classic TypeA-push-yourself-till-you-collapse-and-thensome person. Now when I get tired, I still try to push myself, but I pay dearly for it when I do. And my body seems to be screaming louder now for rest and yes, that is when I feel like I need to lie down NOW – I don’t care if I am on a sidewalk, Im lying down right here!

          I agree with Mel, it requires that we rest more than we used to. And it requires that we listen to our bodies more. For a lot of us, this means adjusting our lifestyle significantly to accommodate. I had to change careers, but not everyone does. But, changing your work environment, i.e.: seeing if you can work from home part of the week, etc may be really helpful for this time of adjustment.

          Just know you are amongst friends who “get it” 🙂

          • nicole says:

            hi,
            Thank you Torea and Mel for the words of encouragement. I really do appreciate it. I know it takes time to adjust – i am mainly frustrated as i have two young children who need me to be energetic. Thank you, though, for telling me it’s not just me that feels the need to lay down now. this is recent for me and i thought i was just crazy but its good i am not alone nor crazy. today i had a new challenge. i broke out in a hive and i guess from my readings, armour thyroid can cause hives. i have to do more research on it. it seems hives can be indicative of hypothryoidism and vice versa. i am finding i have to school my doctor on some of this. thanks again ladies and apprecaite the words of wisdom and encouragement. Nicole

  • Kari says:

    Intersting reading. I’m looking forward to see how your body responds to Armour when you try it out. I’ve been wanting to try Armour for a while, but here in Norway it’s hard to get for some reason. Some stupid rules, probably made up by the pharmasi industry.

  • Barb Backman says:

    Hi Mel and everyone else!

    I love reading your blog and you are the person who got me to buy the Hartwig’s book, “It Starts with Food” and just started the Whole30 with my husband. I am 50 years old and had a total thyroidectomy in January of 2010. I was off any thyroid meds for 10 weeks, to go hypo for my Radio Active Iodine. By the time I got done with that I was starving for meds so went with the Synthroid, which was prescribed by my doc. That seemed to be doing well until this past spring. I have to go off meds for a month every year for 5 years to check for thyroid activity to be declared cancer free. I decided to go on Armour, the doc wasn’t too excited, but I persisted. I like it better than the Synthroid, less janglyness. I work out and eat right, have for years. I did not find weight loss with the Armour, but that may be because I am entering menopause! Yeah!!!!! I have also been going to a nauturopath and she tested my adrenals, bad news. She put me on a supplement called Adrenal Support by Vital Nutrients and alot of other supplements, all natural. Also, got me eating better and at the right time of the day, makes a big difference! I am feeling better and take it one day at a time! Keep up the great blogs!

    • Mel says:

      Thanks for commenting, Barb! Glad you’re enjoying my blog and I love that you jumped into a Whole30. Congratulations!

      Sorry to hear about your thyroidectomy. BOO! It’s no fun, but together, we can at least sort through all the info and try to answer each others’ questions.

      In my admittedly limited experience, it seems pretty common for the adrenals to conk out in association with thyroid removal. I hope your supplements help! I’m on supps for adrenal burnout, too. So many horse pills every day 🙂

      Keep me posted on how you’re doing!

  • Barb Backman says:

    Also wanted to tell you that your book rocks! Love the recipes and the whole layout of the book! Thank you! 🙂

  • Theresa says:

    Hi, I’m wondering how things are going since your Wilson’s Protocol trial? I am very interested in hearing more.

    • Mel says:

      I’m working on a recap post to publish soon. Basically, I’ve been waiting for my blood work to see what’s what. I’m feeling really good and my blood work looks great, so YAY! More detail soon.

  • Theresa says:

    Wonderful! I am looking forward to hearing the whole story. I have a high RT3 and a low ratio 6.6. I am having trouble convincing my doctor to do this protocol even though he is on Dr. Wilson’s list of recommended doctors that have been through training.

    • Mel says:

      The protocol was far less difficult that I imagined it would be. I had to go off all thyroid meds for 2 weeks before starting it, and I was worried I’d be exhausted, but I only had a few days where I was a little tired, and I didn’t get depressed or moody, which was a relief. The protocol itself wasn’t hard; I just had to be organized, and it was interesting tracking temperature, etc. Hope you can convince your doc to try it!

  • Theresa says:

    That is good to know. I’m assuming by organized, you mean with taking the T3 at exactly 12 hours apart?

    Thanks for the encouragement your blog has offered me. I truly hope I can do this.

  • Apelila says:

    Mel
    Thanks for sharing this thyroid journey of yours.
    I have Hashi’s was diagnosed 04/11, but later learned I had the antibodies, low FT4 and climbing TSH since 2006…docs are just clueless about how to treat.
    I did T4 only for 1 1/2 years so my RT3 was climbing like crazy all that time. Had breast cancer this year, surgery and radiation and really just wanted to die because of the loss of ability to function at all. Switched to dessicated NP Thyroid in June and went Paleo in Aug.
    I think it might be too low carb for me, so thanks for the previous link about that. I haven’t found my correct dose yet but am a bit “brighter” mentally than I was 6 months ago, still pretty much physically incapacitated. (sucks I used to be a body builder)
    I’ve just started tiny doses (20mg) of adrenal glandular…can’t believe you are doing HC! That’s not making you gain weight? What’s your dose?
    I’d suggest testing all your homones at least twice a year. DHEA can convert to estrogen and even testosterone in some women.
    Thyroid problems start a hormone rollercoaster…especially in women.

    Love & appreciate your blog, especially your attitude.

  • Kayla says:

    Hi Mel,
    I just found your site today and have been reading your thyroid story intently. I’ve decided to go paleo after being diagnosed with hyperthyroidism at the start of the year and being hospitalized for 4 days thanks to it. My intent is to take the iodine treatment that will send my thyroid into a hypothyroidism state, so reading your blog has definitely put me at a bit more ease. Especially after the nightmare of palpations and numbness all over, I can at least have an idea as to what to expect now after reading this.

    • Mel says:

      I’m so glad you found me — feel free to hit me up with questions in email if you need any more detail, etc.

      Congratulations on making the switch to Paleo. It should help you immensely.

      Everyone’s situation with their thyroid is different, and I hope things go more smoothly for you now that your hypo than they did for me. I’ve had a rougher ride with this than some of my friends who were also hypo, so maybe you’ll catch a break now.

      Keep me posted on how you’re doing!

  • Ally says:

    Hi Mel!

    I’m curious if you have any more updates on your experience with this. I’ve spent the last year and a half working out, eating right…and gaining 40 lbs. 🙁 We’ve narrowed it down to a progesterone deficiency and a thyroid issue, though my labs are (of course!) fine. I’m wondering if the Wilson’s syndrome might fit my symptoms, and I’d love to hear about someone for whom it has worked. I have a doc with a pretty open mind, but you know how it goes — one more thing to try, after a year of trying LOTS of stuff.

    Thank you for sharing your story so openly.

    Ally

  • Rene Groom says:

    I get this. last year I had my thyroid taken out after a two year illness. I did great for about six months, then I hit a wall.. Seemed my body would not break down the thyroid med.. and we tried them all. I was recently diagnosed with an Adrenal Crisis and have just found Paleo as a way to support the healing process. I am finding that a strong protein breakfast 40 grams – helps to regulate my system so that I dont experience the thyroid storms……. I would think that you are in good shape as you go through this, already understanding the importance of protein in the diet. Sending healing thoughts. A fellow traveler. 🙂

    • I’m sorry you had to have your thyroid removed! The aftermath can be tricky business, but eating paleo really helps quite a bit. Lots of good protein, be sure to get about 80-100 grams of carbs every day, too… sweet potatoes, white potatoes, plantains, plus lots of veggies and some fruit. Sending healing thoughts right back to you!

  • Jacquie Wilson says:

    I have all the WTS symptoms and hashis and have been on and off thyroid meds then natural supplements and have gained 60 lbs even though I eat paleo and exercise at least an hour a day. I have most of my energy at night and then have a difficult time sleeping. I need to find a Southern California doc that can do the protocol. Has anyone used cytomel and how much and often? I know food and vitamins interfere so it seems difficult to achieve. Any help or advice is appreciated. Infinite Love and Gratitude!

    • Jacquie, I recommend you find a palo/primal doctor/functional medicine doctor to help you sort through all your thyroid issues. It took me until this year, when I started working with a GREAT functional medicine doctor, to really sort out my thyroid medication. She put me on a very clean, limited version of paleo for a few months, then we reintroduced foods. I had to change how I exercise, and we kept plugging away at adjusting my thyroid meds until they were right. Now I take a combination of Armour Thyroid and Synthroid, and my dose is broken up into two times a day. You really need a functional medicine doc to partner with you and keep experimenting until you get everything right. My doctor — Amy Myers — treats patients from all over, if you’re interested: http://www.austinultrahealth.com. Otherwise, I recommend these two sites to find a doctor near you: http://paleophysiciansnetwork.com/ and http://primaldocs.com/. Best wishes to you!

      • Lisa says:

        Melissa,
        I’m just catching up on your blog. Am I correct that you had a total thyroidectomy or partial. I had a total a year ago. Been taking WP thyroid. Dr Alan Chirstianson keeps wanting to raise my dose to keep TSH<1 for small pappilary cancers that were found on the pathology report. However, I already feel hyperthyroid on what I take (2.25grains). It's very frustrating. He doesn't want to listen to my symptoms. Says the medication is perfect. Two weeks ago he raised my dose to 2.5gr because my TSH had to gone to 2.6 (even though my FT3 was 6 – but he said that can fluctuate and I had blood tested 2 hours after taking my dose). I complied with new dose and now two weeks later my heart is 100bpm and Insomnia is worse than normal. I don't know what to do as he is supposed to be one of the premier thyroid Naturopaths in the country, but it's TSH TSH TSH ignoring everything else…anxiety, racing heart, insomnia
        As far as the Wilsons temp protocol that you did, can it be done with a total thyroidectomy? From what I've read, it's used to reset the thyroid and if you don't have one, how can it be reset
        How soon after your meds do you eat? When you go for blood tests, what time of day do you go and do you take your meds before the test that day?
        Hope to get some of this figured out!

        • Hi, Lisa! I’m sorry you’re having a difficult time with your doctor. Keep pushing! Or find a new one, if you need to. I felt lousy until I found a doc that would work WITH me, instead of just with the blood tests.

          I have about 1/4 of my thyroid left, but it’s unclear if it’s actually doing anything in there. I’m not sure of all the parameters of Wilson’s protocol; I’m sorry!

          I take Synthroid and Armour Thyroid when I wake up, and then I wait 1 hour to eat. Later in the day, I take another dose of Armour Thyroid on an empty stomach (2 hours without eating before I take it), then wait 1 hour to eat again.

          I have blood drawn first thing in the morning, no thyroid meds before the blood draw.

          Hope this helps!

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