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.
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:
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.
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.
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:
Vitamin C, corn-free:
Adrenal Support (for low cortisol)
Vitamin D3 in olive oil:
5-htp – serotonin support:
SAMe – serotonin support:
My favorite multi with active folate and B’s – gluten-free:
A good, gentle iron that works. No folic acid in it:
Hashimotos 411: a very large group full of smart people getting to the root cause of AI disease.
Got Endorphins? A Group dedicated to LDN:
Autoimmune Paleo Diet support group: