A Year Lost

Autoimmune disease. Chronic illness. If you know me, you probably know my struggle with living life to the fullest. I rarely make long-term plans anymore because chances are, I will not be feeling good when the time comes to do the thing I was looking forward to. It’s been day-by-day and lots of ups and downs… sometimes the ups stick around for awhile - like when I first finally convinced my doctor to put me on Natural Thyroid Hormone, that worked great for about a year, but then it didn’t and so I gave up gluten and felt on top of the world until I didn’t, and then had to give up grains and go Paleo, which worked great until… it didn’t. Story of my life. One rotten head cold can ruin my life for months… the cold lasts longer than it should and it messes with everything else and throws all the other stuff *off*. Same with stress. Poof, sickness. Exhaustion. When I feel bad, I pace myself. I get done what I have to do and little else. When I feel good, I do too much to try to make up for lost time, only to crash because I do too much. I should know better, but I keep trying.

I keep trying. I admire that about myself. I have given up a lot of things, but I don’t give up the hope that someday I will get those things back. And I keep trying. Sometimes I complain, because I feel like I do everything in my power to be healthy, yet I still struggle.

This past year was especially rotten. I crashed harder than I have crashed ever, since my son was born, when AI disease reared its ugly head… and it took a long time to figure out what the heck was going on. I went to my doctor because, that is what you do. She’s not perfect, but she’s better than most, and very smart. So you can imagine my frustration when she said to me “I don’t think it’s your thyroid, it has to be something else. Let’s do a sleep study. Let’s look for another AI disease.” Um…. No, let’s NOT. I don’t want another AI disease, I want to figure out what is wrong with the one I have.

So we ran labs. Lots and lots of labs. My thyroid levels, especially my Free T3, looked a little high, so she said to cut back. WHICH MADE NO SENSE because I was in Hypo Hell. I went home and stared at that lab sheet for at least a month. Why do the numbers look that way, when I feel so bad??? I got back online and started researching thyroid disease again – maybe there were some new developments in the time between now and when I last did the research… maybe there was something new to try.

Well, first of all I figure one piece out, my Free T3 was pooling (http://www.stopthethyroidmadness.com/pooling/). That is why it looked high on my labs when I felt so low. The clue was the very very low cortisol test in relation to the high FT3. So adrenals (http://www.drlam.com/articles/adrenalexhaustion.asp) were my second piece of the puzzle. Adrenals and pooling. Two things that take a lot of time to fix. Adrenals can take months or years, pooling takes 8-12 weeks to clear out once you fix the reason it’s happening, UNLESS you go straight to T3 and skip the mixed T4/T3 meds for awhile. So that was my new plan of attack – get some T3, work on adrenals, heal.





Back to the doctor – and more frustration: “It’s not the meds, Pam, it’s Lupus. Your ANA test came back positive for Lupus.” So she wouldn’t give me T3, and wanted me to go to a Rheumatologist for Lupus. NO. No, no, no, no. I’m not taking on another label, another disease, until I figure out what to do about the one I know I have. Lupus is not an easy diagnosis. I looked it up. I looked at the online support groups, and I looked at pictures of people who have it and their stories do not match mine, they do not look like me. So I reject that. A positive ANA test can happen for lots of reasons… and can change from one month to the next. It’s not the sole diagnostic tool. So, no thank you to Lupus.

More tests showed very low serotonin and also positive for one of the MTHFR gene defects. Two more significant clues. Low serotonin, it turns out, can cause fibro-like body pain… one of my issues this year. MTHFR…. can cause ALL KINDS of problems, including low neurotransmitters, like SEROTONIN.

MTHFR is a somewhat new development in gene research. It’s pretty complicated, but the gist of it is this: If you are positive for MTHFR, your body can not handle the lab-created folic acid that most grain foods are fortified with, or the product that is in most vitamin supplements – you need real Folate. Methyl folate. Same with the B vitamins. You need active B vitamins that are in the form your body can use imediately, not in a form that your body needs to convert to a usable form – the converting process is broken if you have MTHFR. And if you have MTHFR, your body can’t detox, it can’t get energy from B12, it can’t function right. One MTHFR gene has a lot to do with high homocysteine levels and blood clotting, another has to do with neurotransmitters and fertility problems and various diseases like Fibromyalgia and Alzheimer’s. That’s the one I have. Go figure. Preemie baby, low serotonin, thyroid disease with fibro-like pain (another label I refuse, because I know it’s all connected to AI thyroid disease.)

So. MTHFR is most likely the reason my serotonin was so low. Also, a body that can’t detox and is anemic (iron or b12) can’t convert T4 to T3 very well, and T3 can pool. A body that can’t detox stresses out the adrenals. And everything else. More big clues. And the answer to MTHFR is pretty simple: take the right kind of folate and b’s and avoid the wrong kind. And start SLOW. I took the full dose the first time and crashed hard. Could not stay awake. I was done for the day. Sometimes we learn the hard way.



http://mthfr.net/

http://mthfr.net/mthfr-a1298c-mutation-some-information-on-a1298c-mthfr-mutations/2011/11/30/

http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24/

http://www.dearpharmacist.com/2013/08/08/2394/

So I worked on MTHFR, and I took SAMe and 5htp to help boost serotonin levels. And I started feeling better and better. This information led me to a very interesting book – I wanted to learn more about neurotransmitters. Dr. Kharrazian wrote a fascinating book about the brain… everyone should read it… you will recognize yourself in this book, and your family members and friends. The best thing is that you can do something about it right away. It’s not a doom and gloom, scary brain book at all.



More on neurotransmitters:
http://pietilachiropractic.com/docs/NTAF.pdf

http://www.createvibranthealth.com/services/neurotransmitter-assessment/

http://www.gethelpfordepression.info/DepressionTests.aspx

On top of all this, I decided I wanted to try something that people have been reporting success with for at least a decade now. A pharmaceutical drug… yes… something I try to avoid because that’s just the way I am, but this one is different. It causes your body to respond with healing… the drug doesn’t mask symptoms, or make you forget about the symptoms, it causes actual healing – makes your body do the work needed to heal. It’s called LDN. Low Dose Naltrexone. Naltrexone is an opiate blocker – a drug given to heroin addicts to block their heroin high… to help get them off street drugs. Sounds kind of scary and totally not appropriate in my situation, right? Well LOW DOSE Naltrexone is different. It’s a tiny fraction of a regular dose, enough to block opiate receptors for just an hour or two at night while you are sleeping… you don’t even notice it… and when the receptors come back online, they cause a healing reaction in every cell – by calling for endorphins to be made to fill the receptors that are now empty. So many endorphins get made, that new receptors are made. And all this work heals DNA at the cell level. Normalizes the immune system. Like magic. I decided I wanted some magic, if nothing else, than to keep all other AI diseases at bay. No Lupus, no RA, no whatever might be lurking around the corner.

My doctor wouldn’t prescribe it – which is pretty typical – most doctors either don’t know what it is or think it’s something it’s not… like an opiate drug. So I had to find a new doctor for it, which was not as hard as I thought it was going to be. I’m pretty happy that I did, because she’s been using it in her practice for several years and considers it the best anti-aging product available. It’s pretty amazing stuff, and I’ve had nothing but good experiences with it. My antibodies have gone down, my energy level has gone up and my body feels relatively pain-free and normal again. I highly recommend it, and if anyone has a hard time finding a doctor to prescribe it, the best way is to call your local compounding pharmacy and ask them if they know of any doctors who use them to fill their prescriptions. It’s a compounded drug – meaning they take the full dose and make it into smaller doses. Your regular drug-store pharmacy is not the right place for this. Also, LDN Science site (below) has a doctor finder tool. The video on their home page is really easy to understand, too.

http://www.lowdosenaltrexone.org/

http://www.ldnscience.org/

My new LDN doctor also led me down another path: iodine. Iodine… sigh. Something I’ve seen thrown around the thyroid boards for the past 10 years, mostly with big warning that it’s like throwing gas on the fire, or at the other end of the spectrum, someone who is fanatical about their success with it and telling everyone they MUST try it… something that I’ve tried a couple of times only to end up sicker with a swollen thyroid. So when she mentioned that I immediately said no, thank you, very much. But… like most things I’m stubborn about, that I need to learn more about, it kept popping up in various places and I started to understand there is a proper way to take it – you can’t just pop an iodine pill… there is a whole PROTOCOL. And after more research, I decided to try it. And yes, it totally worked, this time. No thyroid reaction at all, just good positive stuff. Detox, yes, but then good happy energy. Happy energy. What is that? I have not seen that in a very long time. Not to become a fanatic about it, but it’s really something everyone should look into. It fights cancer and other tumors and cysts, it raises IQ levels in people who are deficient. It heals fibrocystic breast disease and PCOS. We need much more of it than ever in order to fight off all the toxins in our modern life – bromine and fluoride and chlorine, for example – they all fight for the receptors that should be used by iodine.

http://www.breastcancerchoices.org/iprotocol.html

http://iodineresearch.com/supplementation.html



And so, I think I’m better. I’m not deluding myself that I won’t crash again at any time, but I have some new tools and they are working for me. I’m still working on my adrenals, but I have my life back, and I’m not just sleeping my days away like I did all summer. My AI antibodies are down to remission levels, and that makes two AI diseases I’ve beaten now… Graves and Hashimotos. I’m looking forward to making up for lost time, life is good, and getting better. Finally. And for as long as it lasts.

Please note: This is my story – I’m not a doctor, nor do I play one on TV. These are only things I’ve researched and found work for me and my body. Everyone is different.

Getting to the root cause is key with AI disease. Two more excellent books on the subject:





Diet is also huge, and I have found the best diet for me is Paleo. Gluten-free/Grain-free. This book has information about customizing Paleo for AI.



Some supplements I’ve come to rely on and won’t live without:
Iodine:



Vitamin C, corn-free:



Selenium:



Methyl Folate:



Methyl B-12:



Methyl Factors:



Adrenal Support (for low cortisol)



Vitamin D3 in olive oil:



5-htp – serotonin support:



SAMe – serotonin support:



Magnesium:



My favorite multi with active folate and B’s – gluten-free:



A good, gentle iron that works. No folic acid in it:



Facebook Groups:
Hashimotos 411: a very large group full of smart people getting to the root cause of AI disease.
https://www.facebook.com/groups/hashimotos411/

Got Endorphins? A Group dedicated to LDN:
https://www.facebook.com/groups/GotEndorphins/

Iodine:
https://www.facebook.com/groups/iodine4health/

Adrenals:
https://www.facebook.com/groups/FTPOAdrenals/

Autoimmune Paleo Diet support group:
https://www.facebook.com/groups/EPDiet411/

It Starts With the Books

Actually, it started with a few comments from friends who are going through the whole detox, elimination diet thing. A few things they said that made me go hmmn. Even though I've been down the elimination diet, allergy tests road before, wheat never came up as an issue. But I started to wonder: could wheat be a pain thing rather than a digestive thing for me? Really? Hmn....

And then I decided I was going to experiment. Just an experiment. One week with no gluten. By then I'd know. Right? I decided it was so. And I asked the family if they wanted to experiment with me. They both said sure. Four days? Five? A week tops? Sure, they were in. No problem. But first, let's finish that coconut cream pie. OK, now we were ready... one week, no problem.

Except, it was a problem. We all noticed right off that we felt better. Seriously better. Luke and I decided pretty quickly that this was it. We were done with wheat. Frank was not so sure. Grumbly. And then he ate something with gluten after not having any for a few days and he got all hot and bothered and said "wow, yeah."

So there you go. We are a gluten-free home. Even the dog and cat are grain free - they have been for awhile now - Zoe gets itchy paws, Tyger yacks. So, grain free for them, gluten-free for us.

And now I'm ready for more experimenting. Recipes. Originally, I had thought, forget it, gluten-free stuff sucks - we'll just eat veggies and fruits and protein and there's always rice and potatoes, and if you know me, you know that I do love potatoes. It will be fine. But, no. Luke wants cheese crackers. Frank wants bread. And if I'm completely honest, I want pizza dough. And cake, eventually. I can't live without cake. At least not forever.

Recipes. Because I'm not a boxed food girl, I prefer homemade. Everytime. Unless it's Oreos. I'll miss Oreos. And Girl Scout Thin Mints. Hmn.... I'll miss them too. Well, whatever.

Right... recipes. I started with the blogs. The blogs are great. At least the photos look tempting. The comments are encouraging too. There are so many good-looking blogs out there. Gluten-Free Goddess, Gluten-Free Girl, Gluten-Free Nosh... you can find them anywhere.... and they give me hope. The Gluten-Free Goddess just gave us a pizza dough recipe, for example. I'm all over it. (Except... it doesn't really look like pizza, does it? Maybe I should wait a bit until I'm really missing pizza.)

So recipes. Sure you can print them off the blogs... but there is nothing so satisfying as a good cookbook sitting on the shelf with handy go-to favorite recipes bookmarked and waiting, is there?

Here are my first finds:

I can't tell you how happy I was to discover The Cake Mix Doctor has a gluten free cake book. Seriously... overjoyed. Her cake mix books are my go-to books for every cake I've made in the last 10 years... I feel so much better now! And the reviews on Amazon are great. Encouraged and overjoyed.



I also found this one, which has a recipe for Luke's staff-of-life: cheese crackers. I'm making them RIGHT NOW. With Almond Flour. Who knew? Also, lots of good reviews.



And then there is the Gluten-Free Baking Classics, which, from what I am reading, as THE BEST chocolate chip cookie in all the world, gluten-free or not. Everyone says so... I'll let you know as soon as possible!



There are two more exciting titles waiting in my Amazon shopping cart... I'll get to them later. First to try these cheese crackers that are supposed to be just like Cheez-Its. They arn't, I'll admit. They need more salt. But they aren't bad. I don't think Luke is going to like them much. Maybe if I'd used Beecher's cheese?

Wanna try one?




Eh, I should have made those chocolate chip cookies. Next time.

Goodbye Leo!

Goodbye Leo, you were so much fun while it lasted! Goodbye yummy partner's flat crackers that I love so much. Goodbye you wheat thins, crack that you are. Same to you little round donut holes covered in powdered sugar, goodbye. Goodbye fancy bread flour that I was just getting to know. Goodbye Trader Joe's pumpkin bread mix that I loved (until I realized it was giving me hives). Goodbye, goodbye, goodbye to all the wheat-laden items in the cupboards. Goodbye.

Goodbye achy body, goodbye puffy circles around my eyes. Goodbye nervous shaky feeling that something bad is about to happen. Goodbye dark cloud that has been hanging over my head.

Hello, clear head, how I've missed you! For you, I'll keep this up, and for my poor body that has been achy and sore for longer than I can remember, I'll keep this up. And especially, for hugs from my child that no longer hurt, I will keep this up.

Hello to the challenge of discovering a new pizza dough, of learning to make gluten-free Leo bread (is that possible?)... of finding a substitute for the kiddo's beloved Goldfish crackers. We will do it!

Hello to the amazing blogs of people who have been doing it and making it easier and more delicious for the rest of us, I thank you in advance. Things look much brighter in this gluten-free world than they did almost 10 years ago when I dipped my toes in and pulled them back out too quick. Ah well... some of us have to learn the hard way. Remember a year ago when I said "over my dead body". Yes, I can still eat my words.

And I can also eat these amazingly delicious lemon bars, my first gluten-free baking experiment of many. So good. You know you want a taste too!

Meet D-Ribose - my new best friend.

D-Ribose. I love this stuff. I've been taking it for a week now and my energy level has doubled. And I don't ache and my heart isn't scaring me any more. Seriously... this is good stuff. I even found the energy to paint my bedroom - something I've been wanting to do for a year.

Healthy bodies make it on their own, but chronically ill bodies, especially when you have fibromyalgia or chronic fatigue syndrome... which is all related to thyroid disease as many of the symptoms overlap, can use the help. At least that's what I've been reading, and what my experience trying it out has shown, so far.

I'm only posting because I think so many of my beader friends suffer from low energy and may want to look into it too. You can read all about it here: D-Ribose—A Very Powerful and Natural Body Energizer.

Still Researching.... another health post.

This is me: I don't want no stinkin' bandaid. I want it healed up and fixed for good.

This is also me: I don't want to go gluten free.

And this is also me: Life isn't fair.

Stubborn, it's true, should have been my middle name. Just ask my mother. Or my husband. But it's not a bad thing, necessarily. It's what keeps me going and searching and learning. Right?

It's what keeps me going back to here: it's not the thyroid, it's the immune system. I know this for a fact. It's how I got out of Grave's Disease the first time around. It's how I was in remission for awhile. It's how I'm going to get out of this Hashimotos mess too. Even if it kills me.

Because that's what it feels like to think about going gluten free. Over my dead body. Same thing with coffee and dairy. I don't wanna. If that sounds like a temper tantrum, it's because it is. I don't wanna.

But if you read the book "Why Do I Still Have Thyroid Symptoms?" by Dr. Datis Kharrazian, you might just wanna. It's the first book I've read that really goes in depth into what is going on with the immune system. How the immune system is attacking the thyroid. What you can do about it. How it is all a big jumble of connections between blood sugar and adrenals and gut health and all the other hormones in your body. And what you can do about it. If you wanna.

Reading this book is kind of alarming. Even if you are not normally a hypochondriac, it might just get your stress hormones all in a tither. It does mine. Blood sugar! Oh no! Leaky gut! Oh no! Gluten so similar to TPO binding hormone, oh NO!

But, there is also a lot of fascinating information in there, much of it goes against the grain of traditional thyroid disease treatment. Things you may want to try. Or not. Like that gluten thing. I'm not. I did it before without going gluten free, I can do it again. Unless it starts to kill me, I guess then I might just be stubborn enough to try it.

Dazzling

On the health front.... I'm feeling a little better and a little better and a little better each day... and I even made a few beads yesterday for the first time in a long time.

So what have I been doing with myself if I haven't been working/playing? I have been doing research. SO much research... and I've run into a few things that could possibly help a lot of people, so I wanted to share. Today's item is a book.

This is a book that is for anyone who just feels like something isn't right. Perhaps you've been to the doctor and they say you are fine. Maybe you should just drink more water. Get more rest. Have you ever heard that? I heard that for years. I heard that throughout my pregnancy with my son and look what happened, he was born 2 months early, and still, they couldn't figure out why. In my experience, doctors don't know what the heck is going on with a body until it's a crises or an emergency. Anyway...

This book not only helps you to figure out what might be going on, it gives you some tools to help convince your doctor to test and treat you correctly. There are also lots of do-it-yourself supplements and tests and I found it very interesting and helpful. Don't let the title put you off. Luke was reading over my shoulder and he said to me: "I feel Fuzzy". I answered: "You look fuzzy too." He looks at the book some more and then says, "But I Dazzle, not Frazzle."

Here's to Dazzling:

This Pesky Thyroid Business

A girl can only stay in denial so long... at least, that's true if the old "fake it 'til you make it" deal isn't working.

So yeah. I am sick. Again and still. It gets better and worse, of course, and when it's better, I try to pretend I'm just perfectly fine. And I try to catch up on all the things I sit around wishing I could do during the times when I can't move much. It lasts for a little while and then... I crash.

I've crashed. Hard this time.

If you've been around here long, you know it's thyroid disease I'm talking about. Specifically, autoimmune Hashimoto's, which is the hypo kind - the slow kind. The cold and brain foggy kind. The fat kind. I had the other one too, Graves', I'd take that over this any day... sort of. At least I was hyper and skinny and got lots done. That one's good until you worry about your heart and your eyes start popping out. And you get kind of shaky like a drug addict. It's not pretty either. They both really suck.

Anyway... it seems like I crash every spring. Maybe it's all those pretty flowers out there spewing pollen everywhere. Maybe it's all those months of rain and no sun catching up with me. Maybe it's that last flu/cold virus that goes around right before Summer comes and clears out all the germs... I don't know, but there's a pattern. My body gets heavy and it's hard to move. Hard to think. Hard to live. And I'm sick of it.

So yes, of course, I've dragged myself back to the doctor for a full run of tests. What to do? What to try? What else to look at? It seems that, really, there is a lot of new info these days, after all. So I'm trying new things. Terms like "Hypothyroidism Type 2" and "Adrenal Fatigue" and "natural desiccated thyroid" and the discovery that the medicine I've been taking for more than a year contains a filler that I'm allergic too (which pisses me off, seriously, as it's caused my antibodies to skyrocket, stupid stupid stupid medicine, but explains a lot) - all give me hope that there are answers and solutions, some information to work with. Some new things to try. Some old things to toss in the garbage.

But still. It's autoimmune. There is no cure. No one knows why. It's not a matter of "here, take this little pill for the rest of your life and you'll be fine." - they say that... but it's not true.

I read an article this morning by a woman with Lupus, another autoimmune disorder. She explained the struggle of living with a chronic condition in such a brilliant way: The Spoon Theory. Yes, it's like that. Exactly like that. Right now I have very little spoons. I am hopeful that I'll have more, and soon.

Just thought I'd share. I've crashed, yes, but I'm picking myself back up. I'll be around again in a little while... one way or another.