Time for an update! Most of you know I had a follow-up appointment at my Functional Medicine provider’s office in Knoxville yesterday. Although she didn’t have all of the test results yet, she told me to come in since I have been feeling so bad. I am not a doctor so I am just relaying the information about my own situation to you in the best way that I understand it. I’m a complicated mess!! If you don’t want to read all the science-y stuff, that’s fine, but I am finding it completely fascinating, and this is what I wanted. Someone to tell me the specific root cause of my issues and how to fix them. Disclaimer: Please do not take any of my musings as advice. Speak to your own healthcare provider about your own issues.
I am happy/not happy to report more diagnoses. Yay! (I can’t decide if that’s sarcasm or sincerity. In some ways, it’s very validating to know that I am NOT crazy and there is REAL EVIDENCE that I am seriously ill. HALLELUJAH!!)
First of all, I definitely have Hypothyroidism. However, I did not have any thyroid antibodies, which just means that it is NOT an autoimmune thyroid disease. That was fairly surprising but she said that since it is not autoimmune, there is a chance I will not have to take the meds for the rest of my life. That’s pretty great.
Secondly, my adrenal stress is at a phase 2 (of 3), so not completely shot but getting there. She explained that unless you take care of your adrenals too, a thyroid med is not going to do a whole lot of good. So, she put me on a calming thyroid supplement (my panicked self says, thank goodness!), along with a bio-identical thyroid med, which just means it’s natural and non-synthetic. Also, at least according to this article, popular synthetic thyroid meds usually only contain the thyroid hormone T4, while bio-identical thyroid meds usually contain T1, T2, T3 and T4. Since I stopped taking my other thyroid supplements, and the med hasn’t kicked in yet, I’m having some very severe panic attacks. Would love you all to be praying me through until this stuff starts working or I lose my mind! If you want to read more about hypothyroidism and anxiety, you can click here and here. Yes, it is more likely for HYPERthyroidism to cause anxiety than HYPOthyroidism, but since I personally know at least two people besides myself who suffer from hypothyroid-related panic attacks, and I have read countless testimonies from others, it is not as uncommon as we think. Leave it to me to get anxiety and actually lose weight with hypothyroidism. But my own provider has a hypothyroid and lost weight with it so, while uncommon, that is not unheard-of either. I encourage you to read Emily Kopek, PA-C’s Journey into Functional Medicine. She is my new provider and has a fascinating story.
Third, my SIBO (Small Intestine Bacterial Overgrowth) test was surprisingly negative, meaning I do not have a bacterial overgrowth in my guts. However, I do definitely have some malabsorption issues, which I knew all along, but now it is finally confirmed.
Fourth, I am severely anemic and she couldn’t believe no one has ever told me that. It hasn’t been too long ago that a doctor told me my iron was too high. I am unsure how it dropped that much that quickly. She did more labs yesterday so she can figure out exactly what to give me to treat the anemia.
Lastly for now, my Homocysteine level is the highest she has ever seen, as in, double the highest it should be. Yay, me! I’m extra-special! Homocysteine? What the heck is that? LifeExtention has a huge amount of useful information on homocysteine if you are interested. From what I understand, a high homocysteine level means that I am not getting enough B vitamins and Folate, which help to get rid of excess homocysteine. This could be due to my malabsorption issues, or a genetic issue I will discuss below. I’m super-happy to read that a reduction of homocysteine often leads to a reduction of migraines and brain fog. I haven’t wanted to admit it but lately I’ve been having more serious brain fog than just the feeling of cotton balls or fog in my head. I’ve actually been starting to forget where I am going when I’m driving somewhere. Not just the direction I need to turn, but actually where I intended to go when I got in the car! Yikes! A high homocysteine level is also likely the reason I have such trouble detoxifying anything out of my body, and contributes to my extremely high inflammation levels. I never know if the next thing I put into my mouth is going to cause a serious struggle for my body to detox. I can smell someone’s perfume or dryer sheets and be sick for a week. I have to make Jason go get our washing soda to make laundry detergent because I cannot go near that aisle in the grocery store. I can be stuck in traffic and smell exhaust and become ill. I LIVE IN CONSTANT FEAR.
So, how did my homocysteine level get so high? The answer is potentially a combination of malabsorption and a genetic mutation that she thinks I very likely have called MTHFR. Did I just cuss you out? Nope, it’s a real thing. MTHFR produces an enzyme that helps your body use B9, so if I’m not getting enough B9, my body can’t clear out the excess homocysteine. How’s that for a domino effect? Shew, my head is spinning with all this info! If you’re still with me, you are my amazing health warriors!
I had suspected that I have the MTHFR mutation in the past, but wasn’t sure exactly how you get a doctor to look into it without having multiple miscarriages (the mutation makes you highly susceptible for miscarriages). Now, I am completely fascinated to learn that it could explain so many things from my past that have always seemed so odd to me. Random example – I have always felt sick drinking any amount of alcohol, which is why I’ve hardly drank anything in my life. (That, and the fact that the taste is horrendous! I shall never understand you alcohol-drinkers, but excuse my rabbit trail). People with MTHFR often have extra trouble detoxifying alcohol. It’s a pretty big blessing that I’ve always gotten sick with just one drink of alcohol, because the nightmare of the last few years probably would have made alcohol look pretty enticing! MTHFR can also be a major cause of my anxiety as well. Double-whammy! I learned a lot of this information from Wellness Mama, and this site also has a video about MTHFR and Thyroid Disorders that I’m looking forward to watching when my head stops spinning a bit. INFORMATION OVERLOAD!
The enzyme produced by MTHFR is also needed to produce glutathione, which, according to this article, is The Mother Of All Antioxidants. This is a big reason for the difficulty detoxifying. Therefore, a huge part of my treatment will be boosting my poor body’s lack of this precious antioxidant.
In short, I very likely have the MTHFR gene mutation, which causes a decreased ability to detoxify the body and absorb certain nutrients. Therefore, I will be receiving IV infusions of Glutathione, which is a high-powered antioxidant that will act as ‘fly paper’, collecting free radicals and other toxins to help detoxify my body. I have my first infusion on Tuesday and I am super-nervous but super-excited! It scares me because they infuse Zofran first due to reported nausea in most patients and I’m nauseous all the time anyway. Also, I do not do well with needles and the infusion takes an hour and a half. They will give me a half-dose on Tuesday to see how I do, wait a week, and then do a full dose. Then, I will likely have the infusions quarterly along with a possible infusions of Vitamins B and C.
What I am assuming from the above information is that, when I have these high-powered antioxidant treatments, my body will be able to start detoxifying the bad stuff again. My poor guts will finally be able to start to heal, along with the proper diet. Maybe one day, just maybe, I will not have to live in so much fear. While I will probably always get sick with certain things, I may not have to feel like I am dying anymore. I will finally be as close to FREE as possible. That is the hope I am taking from all of this, and I am so excited!
Once my other test comes back, we will start working on my diet. I told her I’ve changed my diet so many times, I honestly have no idea how to eat anymore. Thankfully, her goal is to get me feeling better enough to add as much food back in as possible except gluten. I will never knowingly put another shred of gluten into my body. With an autoimmune disease and a severe intolerance, it is just too risky.
Well, that was a whole bunch of complicated stuff that only some of you may have wanted to know! But, it definitely helped me understand it better by researching and writing it all down. Throughout this journey, I have learned that I HAVE TO BE THE EXPERT IN MY OWN BODY. NO ONE ELSE WILL DO IT FOR ME!!! So, that is my tidbit of advice to you today. Study, learn, and DO NOT GIVE UP!!
I will leave you with a passage I came across today that gave me some encouragement.
"In repentance and rest is your salvation, in quietness and trust is your strength... Although the Lord gives you the bread of adversity and the water of affliction, your teachers will be hidden no more; with your own eyes you will see them. Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, 'This is the way; walk in it.'" - Isaiah 30:15,20-21(NIV)
What I took from this is TRUST. God’s got this. He’s using the right people at the right time to teach me the right way. I covet your prayers that this is truly the final answer, but HIS will be done.
Thank you, my loves! Now, let’s all go take a brain-break! Here’s a pretty picture to get you started!