When last we left the riveting story of my ongoing adventures in functional medicine, it was August, and I'd just been to my first appointment...Read More
Good News Re: The Frankenneck
Long-time readers know: I’ve got a Frankenneck… which is how I think of my no-longer-there thyroid and the associated scar (which is so faded now, thank goodness!, it mostly looks like a wrinkle instead of a throat slash through which a doctor removed what’s turned out to be pretty f*cking vital to my overall happiness and well-being.
The first thyroid meltdown happened in 2009 when I had most of my thyroid removed because of a nodule (which turned out to be non-cancerous… whew!), and the second meltdown occurred about a year or so ago when the remaining bit of thyroid left over just completely conked out.
My endocrinologist and I have been slowly increasing my dose of thyroid hormones to get me to a good place, and it looks like the experimentation has paid off. My latest lab work looks great! I’ve been feeling upbeat and strong and energetic most of the time for the last month or so, and it’s really nice to have the blood work numbers to make me think this trend will continue.
I’m sharing these numbers for those of you who might be struggling with your own Frankenneck adventures. Keep your diet clean and try to remain optimistic; you will find your answers eventually. And a few words of caution: keep in mind that every experience with thyroid issues – whether they’re hypo or hyper – is unique to you. You are a special, delicate flower all in your own way. I’m sharing my experience just so you know there’s light at the end of the tunnel.
What’s it all mean, jelly bean?
This diagram explains the basic relationship between the pituitary gland in the brain, TSH, the thyroid, and thyroid hormones (T3, T4). Whew.
The explanation below is my totally, normal-person speak about these things. I’m so NOT a professional on anything except me and how I feel.
My endocrinologist wants my TSH below 1 and I do, too! The last time I went, it was up to 1.7, my free T4 was normal, and my free T3 was low… which meant that my brain was yelling (in the form of TSH) for more thyroid hormone. But there was thyroid hormone (T4) in my blood, it just wasn’t being converted (because I don’t have a thyroid) to T3, which is the form my body can actually use.
So my endo prescribed some T3 to go along with my Synthroid (T4). It’s been three months on my new doses, and these are my results. YAY!
TSH = .6 (that’s point-6… yay! no more yelling for thyroid hormones!)
Free T4 = 1.54 (good range is .73 – 1.95)
Free T3 = 2.5 (good range is 2.3 – 4.2)
If you have thyroid issues or think you might have thyroid issues, I recommend this book one billion percent: The Thyroid Solution: A Revolutionary Mind-Body Program for Regaining Your Emotional and Physical Health. The emotional and psychological effects of a wonky thyroid can be just as devastating as the physical, and this book did an excellent job of assuring me I wasn’t losing my mind… I was just having some hormone issues. I also recommend the site Stop The Thyroid Madness.
For the full story on my thyroid meltdown, use the Frankenneck or thyroid tags. You can take a romp through my thyroid adventures in reverse chronological order and re-live the exciting moments of emotional meltdowns and violent napping. And if you have any questions about my experience, feel free to post below or shoot me an email. I’m no expert, but I’m glad to share my stories if it helps you with your own.
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Hi, excellent, hope-inducing info! Have you read Stop the Thyroid Madness by Janie A. Bowthorpe? And/or check out http://www.stopthethyroidmadness.com
Excellent, intelligent, helpful info as well.
Be well, k!m
I was going to recommend the same thing – the book and the website! I’m glad synthroid seems to be working for you, Mel, but for many of us(!) it doesn’t!
Really glad to hear you are feeling well – that’s the most important thing!
Emily, I didn’t realize until the last few months that Synthroid wasn’t enough. I’m SO glad my endo prescribed T3, too. Now I have to let that ride for a few months and possibly dig into my cortisol situation. It’s a shame this is all so complicated and that most doctors reach for the easiest, traditional treatment… we all gotta keep fighting for good information.
That site has a lot of useful info. Thanks for sharing!
Awesome news Mel! Super happy for you.
Thanks, Mel G! I still have some investigating to do re: cortisol, but this is an awesome first step!
I’m so happy to hear that you’re feeling better! Yay for feeling good *most of the time*. That’s huge!
I have a correct diagnosis for myself, now, and am treating the autoimmune and adrenal issues before I move on to fiddling with my levothyroxine dose. I’m already noticing a big difference. Yesterday I lifted heavy stuff for the first time in months and it felt GREAT!
Good for you, Lydia. I’m glad you’re tracking down your stuff, too. And congrats on lifting heavy stuff!
That is great!!! I am excited for you!!!
I had my blood tested, again today!!! Hoping to have good results!!! 🙂
Sending good wishes for happy results.
Hurrah, indeed! I’m ready to set my mind on other stuff… like: should I cut my hair?!
YAY MEL!!!! I am SO happy to hear this GREAT news 🙂
Not to hijack your endo… but who do you go to?
I divorced TX Diabetes & Endo after a two year abusive relationship and am now seeing an internist who preaches the love of low carb (fine) but doesn’t seem concerned that despite being on Synthroid and Something-That-Starts-With-A-C-That-I-Can’t-Recall for my T3, my TSH is still inching up (it’s now 1.9 despite ever-increasing doses) and I’m starting to feel not-so-hot again. :\
I go to Dr. Casaubon at TX Diabetes & Endo. I really like him because he told me that the numbers only count for so much and that he would work with me until I felt good. So far, he’s been very receptive and listened to me. Sorry to hear you didn’t have a good experience there!
I went to Dr. Emerson there – who I feel confident after two years of seeing, I can say is a total asshat.
(you have problems regulating your body temperature in the winter? well, it’s cold outside.)
I’m glad that you had a GOOD experience there! 🙂
I’ve been having my own hypothyroid problems for close to a year now, but I wasn’t formally diagnosed until about a month ago. My problems seem to stem from an iodine deficiency that I accidentally gave myself from going really strict Primal. Oopsy. I’m still Primal but supplementing with iodine, and EVERYTHING has been improving over the past 3 months. But I feel like I’m hitting a plateau. My T3 & T4 are normal, it’s just my TSH is high. Do I just need patience? Has anyone else experienced a plateau, and was it temporary?
Hey, Kristin! If you were just diagnosed a month ago, you might need to be patient for just a little longer. BUT… definitely talk to your endo/doc about it.
I know whenever we change my prescription, we wait 12 weeks to see the results — which feels like a long time, but is necessary to really see how things are going.
I’ve been working with my endo for a little over a year to get my prescriptions right… it takes time.
But definitely talk to your endo or doctor about it.
Thank you for your awesome blog. i love. My husband had his thyroid removed about 9 years ago due to cancer. He’s currently on Synthroid and we’ve been doing Paleo eating for the last 7 days. We are both experiencing the “carb flu” and being tired, however he is much much more tired than I am. I’m concerned!
We’ll definitely consult a doctor – in the meantime, do you have any nuggets to share on how Paleo eating affected how you felt (good and bad) based on your thyroid condition? I can’t seem to find any info. online about how Paleo eating should be adjusted in any way if a person does not have a thyroid and is taking synthroid. Are there any resources you know of that we can look into?
Thank you for your time!
Carb flu sucks, but hang in there. It gets so much better!
I don’t have anything in particular about paleo eating and thyroid except for one MAYBE thing. What I’ve read isn’t final on this point, but I have read that it’s best to eat cruciferous vegetables cooked, not raw. So cabbage, broccoli, kale, cauliflower, etc. should be cooked to minimize the goitrogens that can affect thyroid function. Other than that, I eat really clean and it seems to ensure that my Synthroid and Cytomel can work properly. Managing stress is also a big deal — not food-related, but definitely paleo-related.
Awesome – thank you! keep on rockin’.
I’ve had similar issues, but still undiagnosed for the most part. I know I have Hashimoto’s and maybe something else.
I may have to look into your Dr. I’ve seen 2 Endos in Austin with limited luck. I went to Dr. Simone Scumpia because I heard she was the best, that wasn’t really my experience. I am seeing someone at Austin Diagnostic now. Waiting to see where she goes with the tests that were run yesterday, I may be looking for someone new.
Melissa, good luck! If you need another option, I and a bunch of people I know go to Texas Diabetes and Endocrinology. My doc is Dr. Casaubon, but I’ve heard that Dr. Blevins is very good, too. Keep me posted on how you’re doing — and feel free to shoot me email if you want to commiserate in private. I know how difficult dealing with thyroid issues can be.
Thanks, I appreciate it 🙂
Melissa, I just found your blog via Emily Deans. I have a lot to read, I see, but I could cry tears of happiness (or maybe it’s hormonal ;-)seeing that I’m not alone. (I have no thyroid and and often regret I had it removed due to the same reasons yours partially was). Thanks for making me feel like there’s hope.
Michele, I’m glad you found me! The thyroid stuff is an ongoing “experiment.” I’ve decided to try to look at it positively and instead of calling it a “challenge” I’m calling it my experiment. It seems just when one thing starts working, something else needs attention — but that’s life, right?!
Feel free to shoot me email if you need to vent or have questions. Being thyroid-less is its own special thing, and while I don’t have all the answers, I have 3 years of experience I can share. Best wishes to you!
I truly appreciate knowing that I may send you an email…even just to vent (soooo kind!!!).
Currently I’m reading through your blog and absorbing what I can (it is reassuring, informative, entertaining). When questions or revelations come up then I will certainly comment or send a mail.
In heartfelt appreciation,
Would you mind sharing the dose you are well on? I had my thyroid treated with RAI for a hot nodule back in’98. I have been on 88mcg of synthroid for the longest time. Recently I tried adding some iodarol. Now my TSH is elevated. Seeing my endo next week and she may increase the dose of T4. I also have uterine fibroids and long periods….can be from being hypo. Anyway, hope to feel better soon. Was just reading that iron supps and coffee can interfere with hormone absorption……huh, seems like I better stick to water and keep iron for later in the day too.
I currently take 125mcg of Synthroid (T4) and 2.5mcg of Cytomel (T3) every day. For more on my situation, you might want to read this recent post:
Good luck to you!
I have delt with a thyroid situation for 25 years… I was 17 when I was dx with hashimoto’s thyroiditis..I am now 42 and one year thru a cortisol issue…your issues as large as they are seem to be rather stable… I am curious to this cortisol issue you speak of…only as I need to find a top notch endro who can assist me …I am in Austin…I am on 200 mcg of Levo and had been put on a heavy dose of cortisone for replacement….for a year which I am now off….I warn every woman….do not easily begin taking cortisol…bc it can complicate your health…..please ask many questions and have a plan with your dr before you add cortisol pills or injections into your life…..beware of any dr who throws high dowse of cortisol at you…..there’s a very unscrupulous dr in N Austin who has a habit of that…she has her own building……I am slowly shifting to a gluten free diet …so pls share this cortisol stuff…and names of drs around ATX…it is so very individual…glad you stress that…bc bottom line…thyroid and glandular issues are not a general dx….they are one dx for the one patient dx=diagnosis… Please share more of your cortisol journey…this will tie into your diet…and exercise…and I am curious t how you manage it and what information you share…. Tyvm ….Jt
I will definitely keep everyone posted on how I’m doing. I have a checkup with my new doctor in July, so I’m just sticking with the program ’til then.
Mel, My wife has thyroid issues. Well that is an understatement, about 13 years ago she was diagnosed with HyperThiroidism, then they determined it was Graves Disease. The doctors radiated her Thyroid, supposedly an isolated dose, but they over did it and killed her Thyroid and now it doesn’t produce anything. I am commenting because I listened to your interview on Abel James Fat Burning Man podcast and you mention which medication you were taking, which I understood not to be Syntrhoid, but something that sounded like “armor”. I know that wasn’t the word but thats what it sounded like. I was aslking because it might be something she could talk to her Endo about switching to if the Synthroid (she was on Levoxyl until it was discontinued). Great info, I really learned a lot. Thanks
I’m sorry to hear your household is struggling with the thyroid minefield, too — it’s really no fun at all.
I take both Synthroid and Armour Thyroid. In the morning, I take a small dose of Synthroid (T4 only) and Armour (T3 + T4). In the afternoon, I take another small dose of Armour. My functional medicine doc is also without a thyroid, and she found that taking both medications really helps because with no thyroid, we can’t convert, but the body still wants some T4.
Hope this helps!
I’m very late to this conversation…I just discovered your website and blog. I wanted to just say a few things about your thyroid journey and hope it doesn’t come across pushy or “know it all”. I’ve been a hypothyroid patient for over 5 years and doing fabulous. But more than that, I have spent the last few years helping other thyroid patients with proper treatment. I’m so glad you recommended the Stop The Thyroid Madness book/website as it has been my go to for all these years. What I did notice is that you said you are on a combo of synthroid and armour. That’s kind of redundant. Both contain T4. What is missing in your labs is that you didn’t show any Reverse T3. This is where I see many patients and doctors miss. The Reverse T3 will tell you whether or not that T4 is doing it’s job to properly convert. A huge portion of the population CAN’T convert well and not having that test is a missing piece of the puzzle. If your Reverse T3 is elevated above the VERY BOTTOM of the testing range, then you are having issues turning T4 into Free T3. If that is the case…supplimenting with T3 or cytomel in addition to the armour is the best course of action. The issue with labs is that when you do suppliment with the active T3, your body doesn’t need to make the T4 and it will be suppressed. That’s perfectly fine for T4 levels to be low. Anyway…Sorry that was a long comment. I’m glad you are doing well!! Thanks for the fabulous recipes.