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Thyroid Update

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. There’s good stuff coming later for you. For my #FUThyroid friends, welcome! To get up to speed, you might want to read this post about my previous status in April 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.

The Situation

When I saw Dr. Sebring in April, he tested my DHEA and Reverse T3. The numbers were not good. One might even say they were bad. He started me on a bunch of supplements, encouraged me to continue with my strength training and paleo diet, and said to come back in three months. Well, it’s been three months, and at my recent followup, he re-tested my DHEA and Reverse T3; this is what we learned.

DHEA

What’s DHEA?
A quick reminder of what I know about DHEA, thanks to the Google oracle: Dehydroepiandrosterone (DHEA) is a hormone controlled by the adrenal gland. Hormones like estrogen, testosterone, and our old friend cortisol depend on our bodies’ production of DHEA. Low DHEA means low production of these hormones, which can lead to all kinds of lame sh*t like lack of energy, low libido, and fat gain. DHEA supplementation can help with adrenal function and is used to treat lupus, HIV, obesity, depression, menopause, and osteoporosis. I’ve been taking DHEA supplements for three months.

My DHEA
When we tested DHEA in April, my level was so low, it barely registered on my blood test. The expected range for DHEA is 27-206 UG/DL, and my came in at a whoppingly unimpressive <30.

I’m pleased to announce that this time, my DHEA was measured at 137. It could still move up a bit, but at least it’s near the middle of the range this time. I’m continuing with my DHEA supplements, and Dr. Sebring decided to test my testosterone level this time, too. I’m waiting on those results.

 

Reverse T3

What’s Reverse T3?
In a nutshell, Reverse T3 is a by-product that is made when T4 is converted into T3. When things are working properly about 40% of T4 becomes T3, and the rest is chucked out as RT3. But… when emotional, physical, and biological stress enter the picture, those percentages can be disrupted and T3 — the active form of thyroid hormone we need — goes down. For more on this, read my previous, lengthier description.

My Reverse T3
When looking at RT3, the raw number is informative, but even more telling is the ratio of free T3 to RT3. As explained above, when the proportions of those two hormones get out of whack, mayhem ensues.

In April, my RT3 was 523. The “expected range” is 90-350, so I was way off that chart. Additionally, my ratio was lousy. Generally speaking, when comparing free T3 to RT3, a healthy ratio is 10. When I plugged in my numbers, I got a 4.

When we tested my RT3 last week, I was still, as the lab report so drily puts it, “Out of Range.” Again, the Reference Range is 90-350 pg/mL, and my measurement was 410. Not quite as bad as last time, but still too high. My new ration is 5, which is still sucky.

What I’m Doing Now

Dr. Sebring proposed a somewhat bold and controversial treatment protocol, and after lots of consideration, reading the wonderful book The Thyroid Diet Revolution (review coming soon), and discussing it with Dave and my parents, I’m giving it a try. I’ve been a little anxious about making a big change, but I had to admit that my current treatment wasn’t working. My energy is mildly better, but I’m still holding weight around my middle (cortisol!), and I don’t like knowing that my Reverse T3 is so high. Vanity about the extra body fat aside, there’s clearly something wonky going on, and I’d like to correct it.

Wilson’s Syndrome
For the next 22 days, I’m following the treatment protocol for Wilson’s Syndrome; you can learn more about it here and here. (Warning: if you Google Wilson’s Syndrome, you will read lots of stuff that says it’s not a real thing. That worried me a little until I read The Thyroid Diet Revolution.)

What it means in practical terms is that I had to stop taking all thyroid hormones for 10 days to get all of the T4 out of my system. Right now, my body really likes turning T4 into RT3, and we need to stop that cycle. I’m on Day 9 of no thyroid hormones and except for some spaciness, a little extra anxiety, and occasional feelings of needing to lie down immediately, I feel OK. I was very concerned about what might happen when I stopped my Synthroid, but so far, I don’t feel much different than I did when I was on it.

On Tuesday, I’ll start the new hormone protocol, which is T3 only, taken in gradually-increasing doses for 10 days. Then after that mid-point, the doses start ramping back down to where they started. Every day during the 21-day experiment, I also have to take my temperature and pulse three times a day. This information will help us figure out what dose of T3 is right for my body. This protocol is meant to re-set the propensity for my body to be a RT3 factory, and at the end of the 21 days, we’ll need to figure out what to do next: Keep me on T3 only? Try Armour which is a natural blend of T4 and T3? I know people who use both treatments and feel good, so it all depends on the individual.

The other slightly wacky thing about the protocol is that I have to take my daily T3 doses exactly 12 hours apart. Both Dr. Sebring and the pharmacist told me, in very serious tones, that they’re not kidding: 12 hours apart, as exact as I can make it. So I have an alarm watch set for 9:30 a.m. and 9:30 p.m., plus a special pill box to ensure I don’t mess it up. And I got a new digital thermometer and heart rate monitor to help with charting my temperature and pulse. I kinda feel like this:

Other Supplementation
I’m continuing with my other supplementation, too. I’m sharing this list for informational purposes; please talk to someone who knows what they’re doing before you start dosing yourself. This is serious stuff.
- Adreset
- Corti-B Plex
– DHEA
– Cortisol (prescription)
– Melatonin
– I’m also still taking Vitamin D, Natural Calm

Exercise
I’m sticking with my twice-a-week strength training, walking for at least 60 minutes every day,  and getting at least one (but preferably two) run-walk sessions each week.

Meditation & Yoga
Right now, I’m committed to yoga 3X a week: two kundalini classes and one hatha. I’m sticking with meditation every day from now on, and I’ve learned a simple kundalini set I can do on my own, so some days, my short meditation might be replaced by an hour of solo kundalini at home. My kundalini instructor also has thyroid challenges and she said that her practice has helped her quite a bit. I’ve only been practicing kundalini for about 8 months, but I know it’s helping me, too.

Nutrition
I’ve been eating Whole30 style about 90% of the time for the last three weeks, and that’s going to continue from now until August 24 when I hit the road to Pennsylvania. I won’t be going off the rails completely on our trip, but there will be more occasions to indulge. For now, I’m staying focused on eating clean and continuing to eat in a 12-hour window with no snacks. My macronutrients are about 40% fat, 30% protein, 30% carbohydrates, and I’m keeping track in a notebook. Occasionally, I plug my food into FitDay to double check on my calories and ratios, but I’ve got it pretty nailed down from experience.
So that’s my story for now. I’ll update you all again when my 21-day experiment is completed — or in between if something really dramatic happens. Feel free to hit me with questions in comments, and if you’ve ever done the protocol for Wilson’s Syndrome or you only take T3 (or you take Armour), I’d love to hear from you in comments about that, too.

 

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51 Responses to “Thyroid Update”

  1. Lisa says:

    I have thyroid issues, too. Thanks for sharing your journey. I have Hashimoto’s (autoimmune) and hypothyroidism. I have never heard of Wilson’s; I may need to look into that because my RT3 has been wonky, too. My previous doctor had me rotate taking Armour and T3. My current doctor has me on just Armour. It has helped tremendously, although I long for the days when weight would just fall off and I was toasty warm. And I wish I could take DHEA; it makes my face break out immediately, though. I’ll stay tuned for any miracles (and let you know if I have any of my own)!

  2. Jan Stephens says:

    First off, I really enjoy your site and Liked it on Facebook a while ago, so I get the updates on what you eat and how you exercise. I’ve been a Paleo gal, myself, for almost four years now, slowly reducing cardio (I was a junkie) and increasing strength with more meditative options.

    I was especially interested in this post because I’ve had what seems to be a very similar experience: deprived adrenals and low DHEA and a slow T3 conversion. It took a while to find a doctor who even tested everything and broke out the umpteen numbers, much less explained it to me and treated the actual problem. I’ve continued the Paleo diet and exercise plan and take 60 mg of Armour daily, in the morning, which seems to do the trick for me. (In addition to some hefty supplements, which includes DHEA and 5,000 iu of D3.)

    Anyway, good luck. It sounds like you have an excellent doctor who is committed to getting it right, not just looking at a chart.

  3. Melissa says:

    Melissa, Can you direct me to a post on what your symptoms were? I am thinking of going to my pcp and asking for a full thyroid workup. After doing some research, I have several that point to the thyroid. Any advice you can give would be great.

    Thanks,
    Melissa

    • Mel says:

      I don’t have one post that summarizes my situation, unfortunately.

      In a nutshell: I had a thyroid nodule that was quite large, so it couldn’t be biopsied. I had most of it removed in 2008, and they doctors hoped that the remaining thyroid would still function. It didn’t, which started my odyssey of trying to find the right treatment.

      After the thyroid removal, my symptoms were:
      extreme fatigue
      mental fogginess
      mild depression
      slow weight gain
      cold feet & hands
      hair falling out
      sensitivity to noise and light

      If you go to this link and page backwards, you can read all of my thyroid-related posts. http://www.theclothesmakethegirl.com/tag/thyroid/

      I 100% recommend The Thyroid Diet Revolution because it’s the most comprehensive information I’ve ever read about all the variations of thyroid symptoms and disorders. Don’t be put off by the lame title. It’s not a “get skinny in 10 days” book — it’s a very well researched compilation of all things thyroid related.

      • Melissa says:

        The mental fogginess is Very Bad. I can’t remember words as I’m speaking. The hair also. Weight gain, low libido, joint pain, on and on. Thank you so much for responding. I am going to read your posts and order that book.

        • Anne says:

          I had so much joint pain, I spent a fortune trying to get relief. When I started on low dose Naltraxone , my joint pain went away, and so did a lot of the other thyroid related symptoms. I urge you to jointhe group,everyone is so friendly, and it could be life changing for you. Go to Beating thyroid disease with low dose Naltraxone ,on face book.

        • Kit Kellison says:

          Here is a link to a list of patient-recommended thyroid doctors: http://thyroid.about.com/cs/doctors/a/topdocs.htm

          If there isn’t one in your area, please go see a naturopath. Often they are better versed in the latest thyroid info and will give you proper testing. I can’t tell you how often I’ve encountered doctors (especially the “experts,” in endocrinology) who just aren’t up on the latest info regarding testing, test interpretation and proper dosing/treatment. Thyroid hormone is needed for every cell in your body. To go untreated can devastate your memory (many Alzheimer’s patients are really undiagnosed thyroid patients), thin, brittle hair and nails, dry skin, insomnia, anxiety, depression, horrible aches and pains, weight gain…the list goes on!

  4. Andrea says:

    Hello!

    It’s funny that I see this today. I just had my ENTIRE thyroid removed Friday and broke out in hives after returning home. I’m concerned about the Hashimoto’s side of my thyroid and what happens after a total thyroidectomy.

    I actually do have a question though, how did you feel when you went off of your thyroid medication? That seems extreme and actually scared me when I read that part of it. Also, with all those other supplements what is your schedule like with taking them? How do you take them (as in time increments) because I’m on Iron, Vitamin D, and Synthroid. I’m about to add Selenium and have to space things out because of absorption issues. Just would like to pick your brain a little.

    Good luck my dear. The thyroid journey is long, but knowledge is key to finding success.

    • Kit Kellison says:

      Andrea, I have had my thyroid out also. I’m not sure whether going off thyroid hormone to treat Wilson’s applies to people like us. I’d see a naturopath about it.

      Just a word of warning…getting my thyroid removed made me bat-shit crazy for about six months but it passed. I’ve heard others who went through the same thing…just know that it passes once thyroid levels are at optimal levels.

    • Mel says:

      My thyroid was removed, too, and honestly, everyone’s experience is different. If you read through all of my previous posts on my experience, you can see what it was like for me after my thyroidectomy — but everyone really does have a different experience based on their other health factors, exercise, stress level, and other hormonal systems.

      WHY MUST IT BE SO COMPLICATED?!

  5. Anne says:

    I too have thyroid problems. I was on synthroid for 23 years, and I had to be really careful about eating. I joined a group on fb called Stop the thyroid maddness and learned that synthroid is loved by endos, but hated by thyroid suffers . I asked my dr. For a natural thyroid and he prescribed Erfa thyroid , Canada’s Armour, I hear it’s actually better. I don’t have to worry about eating anymore, synthroid , will make you fat. I then joined a group called beating thyroid disease with Low Dose Naltraxone , and that was life changing. LDN helps the immune system and after 6 months being on it, I am on just a small amount of Erfa thyroid. I had high cortisol and I couldn’t sleep more that 4 hours. I take holy basil and Relora, and I sleep 11 hours. Melatonin is not good for people with thyroid disease, but you should take selenium. . I wish you the best, this disease causes so much pain and suffering, and it’s so misunderstood by everyone, especially drs. Feel free to join the 2 groups I mentioned, and learn and get your health back.

    • Andrea says:

      I’m a part of both those groups. How did you get a prescription for LDN?

      • Anne says:

        I have the most open minded dr. He knew about it , and prescribed it to me when I told him I wanted to try it. I’ve been oni it for 6 months and I love it. Have you tried going to a compounding pharmacy, and ask them about drs in your area that might prescribe it to you?

        • My wife was treated with ‘Radioactive Iodine’ treatment on the 9th July 2013 then passed away on the 12th July 2013. So, sad and tragic for me!

          • Anne says:

            She may have been allergic to iodine.
            I was diagnosed with an allergy to iodine. I had a brain scan that week. Good thing the technician told me they were going to inject me with iodine. My allergist said it could have been fatal.

          • Mel says:

            I am so sorry for your loss. Wishing you peace.

  6. Stephanie says:

    Melissa,

    I had high RT3 a couple years ago and have been on T3 only since. I want to warn you that the Wilson Protocol is very harsh on the adrenals and isn’t necessarily going to correct your conversion problem. Did your doctor say anything about trying to figure out the cause of your high RT3. There’s a reason your body goes into that mode of producing too much RT3 and not enough T3. There are many different causes. Some can be corrected and some can’t. The tricky part is figuring out the cause.

    There’s a forum that I was a moderator on for a while and we saw many people try the Wilson protocol without success. Most people that I’ve spoken with do good on this protocol.

    http://thyroid-rt3.com/

    I highly recommend you read that site before you start the Wilson Protocol. I’d be happy to share my experience or answer any questions if you have any.

    In addition to high RT3 I also had adrenal fatigue. I’ve spent the last two/three years trying to get my life back.

    –Steph

    • Anne says:

      The author of stop the thyroid maddness, says its caused by pooling,too much hormongoes into the cell and it pools causing a RT 3 and her book or fb page will tell you hoe to coerect it.

    • Mel says:

      Thanks for sharing your experience. I’m journaling my moods, food, temp, pulse, etc. so I can track how I’m feeling. My husband is on “rage watch” ’cause sometimes I can’t tell when I’m being cranky :-)

      I did read that site when I was doing my research before agreeing to try the Wilson’s protocol. THANK YOU!

      If anything wonky happens, I might hit you up in email.

      • Stephanie says:

        Mel,

        I’m responding to your other post here because there was no reply button on that message.

        Anyway, I’m happy to share my dosage and how I got here. I’m currently on 60 mcg of T3 and just recently added some T4 (Tirosint) to the mix. Still trying to decide if the T4 is ok. I will test my RT3 soon to see where I’m at. Every time I’ve added T4 in the past I’ve run into issues with the T4 converting to RT3. So far I’m feeling good on the Tirosint with no noticeable hypo symptoms. I’m even losing weight thanks to the paleo diet, which hasn’t happened in years.

        I dose my thyroid meds 4 times a day as 10 mcg of Cytomel (T3) sublingually at 7 am with 50 mcg of Tirosint (T4), 20 mcg of Cytomel sublingually at 11 am, 10 mcg of Cytomel sublingually at 4 with 50 mcg of Tirosint, and 20 mcg of Cytomel sublingually right before bed. Dosing 4 times a day probably seems like a pain, but you get used to it and it is much easier on the adrenals. Some people can handle few doses, but not many, unless they are using the slow release T3. The slow release can be problematic and is much more expensive, so I chose to use Cytomel. I like the flexibility that the Cytomel gives me, because it’s easy to change my dose if I start feeling hyper or hypo.

        When I was on T3 only I was on 75 mcg dosed 4 times evenly throughout the day. Most people end up somewhere between 75 and 125 mcg of T3 when on T3 only. I followed the protocol from the website I sent earlier, so started on a very low dose (10 mcg) and ramped up. Because I was also dealing with low cortisol and low aldosterone I ramped up very slowly. The ramping up on the protocol requires that you check your temps three times a day to make sure that your adrenals are able to handle an increase. I can explain if you are interested in how this is done. I would take my temp three times a day and record the avg temp. Once I had stable temps (within .2 degrees) for a few days I would go up in my Cytomel by 5 mcg.

        I knew I was on the right dose once my average temperature got to 98.6 and my symptoms were gone. I was also making sure I didn’t have hyper symptoms. The problem with T3 is that intolerance symptoms due to low cortisol or low iron can feel like hyper symptoms, so you definitely have to be very aware of what is really going on.

        If your on a low dose of T3 and you are feeling shaky it is most likely low cortisol and not hyper symptoms. The anxiety that some people experience on T3 is usually due to low iron. Your body isn’t able to use T3 properly with low iron, so it is very important that you make sure your iron levels are good before starting. You need to check iron serum, TIBC, UIBC, and iron saturation. A ferritin test is also useful to check iron status. If your cortisol is low when you start T3 you will most likely feel much worse than before starting it, so it’s also important to make sure your cortisol levels are good. Based on information on the Stop the Thyroid Madness website you can actually use T3 to help your adrenals, but I never used that method so can’t speak to it.

        Sorry this is so long. If you have any more questions let me know. I have had a few very crazy years, and feel like I finally have my life back, so am very happy to share my story if it might help someone.

        –Steph

  7. Becky says:

    I have had hypothyroidism since I had my first child 34 years ago. I can’t say that any doctor has ever done anything out of the ordinary to check my thyroid, other than checking to see if I’m taking enough Synthroid. I’m thinking I need to get someone’s attention.
    Thanks for the post, and I may read the Thyroid Diet book, too. I hope all goes well for you, and will be watching for updates :)

  8. Lydia says:

    I so much appreciate your sharing this stuff with us. I’m at a low point with my thyroid problems–the worst they’ve been since I first got diagnosed with a thyroid disorder (eight or so years ago). It helps SO MUCH to know I’m not alone, and someone I like and respect is suffering similar problems and not giving up. Today I felt like giving up. Your entries about your thyroid journey are one of the things that keep me from throwing in the towel. Thank you.

    • Kit Kellison says:

      Oh Lydia! Please find a doctor who will give you the proper test and seek to get you optimized. It’s so common to be under-treated with thyroid disease. The depression alone is horrid. Does your doctor look for Free T3? Does he test for reverse T3 (rT3)?

  9. Melissa M says:

    Mel, I am so impressed with the grace and intelligence with which you handle this. It must be frustrating and scary at times but you are staying informed and on top of your health and that is awesome. I have a lot of admiration for how you’re pushing through the tough time you’re having right now. Hang in there and keep fighting!

    • Mel says:

      You are so sweet to say that… although I’m not sure the way I cuss and complain about my thyroid has much grace :-)

      I will definitely keep on fighting to find a good treatment and sharing what I learn. Grrrrr!

  10. Carbzilla says:

    I’ve done the protocol for Wilsons Syndrome bc I have a similar situation. It was the only way I can lose weight these days. However, it makes me super ragey. It bypasses the central nervous system, and I’ve never felt so out-of-control anger feelings. It took a lot of control not to bite everyone’s heads off. (and I’m a super nice person) Just something to be aware of. I was able to lower my RT3 but not enough. I’m about to start a very low T3 regimen again. I’m curious about the DHEA bc I don’t think we tested it nor have I taken it. Interested to know how it goes.

  11. Ashley says:

    Hi my name is Ashley and I’m trying to get pregnant and I can’t take all the herbs and vitamins I’m taking if I get pregnant. I hate synthroid it makes me crazy. I’m having such a problem finding a doctor that is willing to do more detailed tests or write a script for something other than synthroid. I’m almost at my wit’s end.

    • Kit Kellison says:

      Hey Ashley, what do your lab numbers say? Most people are really ok on Synthoroid (I’m not one of them), but if you have a problem converting t4 to t3, you want to be on a t3 supplement like cytomel, or go on a natural thyroid supplement. I’m on ERFA (from Canada), but the problem with that is that there is really too much T3 in pig thyroid hormone so I have to take it 3 times a day to keep from getting heart palpitations and being anxious.
      Synthroid is really bad for you or you are just being under-treated for your thyroid problem without knowing what your lab tests say. If both your Free T3 and Free T4 are in the mid-top of the normal range, that is ideal. If both are in the bottom third of the normal range or lower, you might benefit from a stronger daily dose. If your Free T4 is significantly higher than your Free T3, you should get your reverse T3 looked at and maybe a doc can supplement your Synthroid with Cytomel (T3 only). Do you have an naturopaths where you live? I’m not sure they are great for everything, but they are often really really good for thyroid and hormone problems. I’d say they are better informed on the latest info in thyroid care than 95% of the endocrinologists who are so overwhelmed these days with diabetes patients…

      • Kit Kellison says:

        I apparently badly edited the comment above: meant to say
        “Do you know whether Synthroid is really bad for you…etc.”

        I would have loved it if it worked for me, I wonder whether I didn’t give it a good enough try. I do get tired of having to take my ERFA three times a day, for one thing, I miss too many doses, not good for my weight-loss plan! If I take it in 2 or less doses I get hot flashes, heart paps and anxiety. At least a T4 only medication like Synthroid is broken down into T3 slowly so makes people less anxious. Unless, of course, you are one of the many who don’t convert well from T4 to T3…

        • Anne says:

          If your taking erfa 3 x per day, and your getting heart palpatationsyou are over-medicated. I was taking 137 mg of synthroid. Per day. I was having such a problem with food,because I would gain weight. When I switched to erfa, I take such a small amount . I think about 30 mg. I cut one 60 mg in half. The best part is I’m now losing weight and inches, belly fat is going down. I’ve never heared of taking erfa 3x per day. Only T3 is taken3x per day, like cytomel.

        • Stephanie says:

          The symptoms your describing are intolerance symptoms, which are usually caused by low iron or weak adrenals. Have you had you iron and cortisol levels checked?

    • Therese says:

      I see that no one so far has mentioned Tirosint; my daughter switched from Synthroid to Tirosint 1-1/2 yrs ago & almost immediately experienced more energy, less brain fog. She has congenital hypothyroidism so she’s been on Synthroid for 18+ yrs. Over the yrs one dr. tried Armour & Cytomel but nothing worked as well as Synthroid which is not very good. I have concerns about my daughter’s health in the future when she’s ready to have children; I hope you will share your thyroid/health experience as it relates to pregnancy.

      • Kit Kellison says:

        Hey Therese, What is Tirosint? Is it T4 only, like Synthroid…is it an artificial T3/T4 combo or is it natural dessicated pig thyroid (like Armour, ERFA, etc?)

        Have never heard of it, would love to know more.

        • Stephanie says:

          It’s a T4 only synthetic thyroid med. It is a bit cleaner than other meds. It comes in a liquid gel form. The formulation consists only of T4, glycerin, gelatin, and water. Unlike some tablet formulations, Tirosint is free of dyes, gluten, lactose, sugar, and alcohol.

          I’ve recently been able to add this med to my T3 treatment I had been on for over two years. I’m still on a lot more T3 than T4, but in the past taking any T4 has been a problem because of the conversion issue. I haven’t tested recently, but symptom wise I’m doing good.

          –Steph

          • Mel says:

            Hey, Steph! Would you mind — either here or in an email to me — sharing your T3 dose and what you did to find your correct dose? I’m feeling really comfortable with the Wilson’s Syndrome protocol because it’s so specific, but I’m wondering what we’ll do AFTER that because my doc is thinking I will stay on only T3 to see if that works for me.

            melissa@theclothesmakethegirl.com if you don’t want to share specific here in comments.

            Thank you!

  12. Kathleen says:

    Even as someone who is happy as a clam with her thyroid this post was so informative. Thank you for sharing.

    What I learned from reading about your experience is:
    • We need to be informed and educated about what’s going on in our bodies when there is a problem
    • We need to find doctors who will truly be our advocates – and try bold and perhaps controversial things
    • And finally – we need to be our own advocates most of all. It takes energy and effort to be healthy. I know so many people who are willing to live in bad health and eat poorly because they’re tired and hopeless

  13. Terri says:

    i hope this new treatment plan gives you better results! and thanks for updating us. i was wondering how you (and your thyroid) were doing.

  14. Laura says:

    Thanks for sharing your journey and experiences with all of us faceless readers. :)

    I wish you luck on your new program and hope the experiment yields great results.

  15. Therese says:

    Melissa, thank you for sharing your continuing search for thyroid health & for sparking such a responsive sharing of experiences from other readers.

  16. carmen says:

    Thanks for a great post! I was diagnosed with hashimoto’s a year ago and it’s a daily challenge. I finally found help through my chiropractor after years of doctors telling me everything is fine and I just need to exercise and lose weight.
    I follow a program based on the book “why do I.have thyroid symptoms?” By Dr Datis Kharrazian. It’s been life changing.
    Thanks for sharing your story. We need more advocates for patient determined care.

  17. Mel says:

    Thank you so much, everyone, for your comments and sharing your experiences. Thyroid stuff is SO tricky… it’s really good to know we’re not alone in our struggles.

    A few take-aways:

    1. It is absolutely essential to find a doctor that will work with you. If you’re being stonewalled by your physician, endocrinologist, or gynecologist, find another doctor. And another and another, until you find one that will listen, take your concerns seriously, and try different treatments to find the one that works. You are NEVER required to suffer in silence with a doctor that’s not helping you.

    2. A TSH blood test is not enough. To get the whole picture, you need to test:
    TSH
    Free T4
    Free T3

    And if all of those look “normal” and you still feel crappy, you need to also test Reverse T3.

    3. Arm yourself with information. This post and the comments recommend lots of good resources for learning more.

    Good luck, friends. Let’s keep this conversation going and find some answers.

  18. Laree Draper says:

    I’ve done the Wilson’s protocol a couple of times. You may like it and learn a lot. There’s a possibility it may give you a jumpstart and put things back to normal. That didn’t work well enough for me, but my doc uses it with his patients and is sometimes real pleased with the results. If it brings you to borderline, it becomes a question of, is this good enough, or should I go on meds forever.

    I ended up in the good-enough category for a couple of years, and have been rethinking that lately. One of my thoughts is to do a Wilson’s jumpstart once a year, maybe mid-winter, with DHEA adrenal support ongoing. Hope this goes great for you, Mel.

  19. I got my Reverse T3 tested and am waiting on results after reding this article.

    http://drcate.com/going-low-carb-too-fast-may-trigger-thyroid-troubles-and-hormone-imbalance/

    Have one 45 days of Paleo thanks to Well Fed, your awesome website and Aleo Comfort Food Cook book. Just started a custom compound T3 from people’s pharmacy – litte funky so far. Hubby says I’m a “little bit more assertive” ;) in flashes lately… I was concerned about dropping yuck carbs last time I tried got gout ( way less than fun) I have it again – lot less. My thyroid saga started a year ago with all your symptoms and tuned into mycotoxin poisoning – now thyroid conundrum… Have lost 20 lbs in last year most the last 3 months as I went paleo. Some good news and such a better way to eat! BIG thanks my family is supporting the paleo with gusto!!

  20. Rebecca says:

    Hi Melissa,
    Thank you for sharing your thyroid journey. I have a feeling you’ll find the perfect tweaks for your body to get everything functioning as it should. Have you read Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal by Datis Kharrazian? I took a 4 day workshop based on the research presented in the book and it was amazing. It’s just another resource I thought I’d mention because I was really impressed with the information I learned. Best health to you!
    btw
    LOVE your book Well Fed. Beautifully presented and fun to read.
    The Scotch eggs and spinach meat muffins are awesome go to snacks! : )

    • Mel says:

      Thanks for the suggestion, Rebecca! I read that book early in my thyroid adventures, and it was very helpful. Thanks for the reminder, especially for newbies who might be reading this.

      And thank you for the sweet words about Well Fed. YAY!

  21. Rachael says:

    Hi there,

    I was so impressed with Dr. Sebring at paleofx that I decided if ever truly ill, I’d go see him. As I continue on my Paleo journey, I’ve seemed to have hit an unexplained road block in fat loss and was thinking about going to Sebring, but am afraid that I cant afford him since he doesn’t take insurance of any kind. You can tell me to but out of your business, but can you provide a range of how much office visits with him cost?

    Thanks! Love the book and the site.

  22. Anne says:

    You might want to supplement with magnesium. There is new science claiming we are very depleted and it can cause a lot of muscle pain when magnesium levels are low. Since I started supplementing all my pains are gone.

  23. Heather says:

    My story is getting complicated as well. I had thyroid cancer. 5 years ago. We watch the thyroglbulin. However this past march was in the ER with what they though to be to much synthroid as my TSH was 0.4 but that is where my endo wants it to supress my cancer, Papillary Carinoma. While headed to the ER (NOTE I WAS TAKING Provera pills for heavy Menese) my heart rate hit me at 150 out of no where, also my potassium was a little low due to the meds I was out on for high blood pressure while on birth control… I was in the ER two times for heart rate issues and high blood pressure. I found a natural Dr. He just did the Vitamin D, DHEA, Reversed T3 and Cortisol. All my drs said I have anxiety, yeah I do and it is so bad I am dizzy all day and sick all the time. My digestion has gotten bad, but I can’t lose weight. I hope and pray I am fixable because sometimes I feel like I am going crazy. I am glad I found this web site!!!

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