My biggest challenge hour to hour is fatigue. Extreme fatigue. It has been with me since the beginning, improved reasonably when I went on thyroid medication (which I hope to be off of eventually), with the remainder just staying with me. It’s been so long, I can’t remember the last time I felt well. I really want to do a better job at documenting a lot of the thought process behind what I’m doing/trying and why. I’m tired of feeling like this and I hope what I’ve discovered and shared can eventually help someone else through a tough time.
WHY IS THIS HAPPENING????
I eat well, and I don’t cheat. I’m taking great care with sleep. I’ve changed all of my food to organic & never processed, I never eat out, don’t use toxic storage containers (BPA) or chemical-laden health products/cosmetics, reduced my stress level with yoga, daily meditation, and getting things off my plate. Yet I’m still here.
YES, it’s frustrating that I have so little to show for it!!! I need to start looking at the less-obvious things that are causing symptoms because diet and lifestyle are clearly not the only factors keeping the blech going. I made some questions for myself:
- How do I know if my adrenals are still contributing to the blech?
Well, I don’t. It’s been a year since I tested and found I was in Stage 2 Adrenal Fatigue. I’m going based off of information that’s a year old.
- What else could it be?
All the things. I get caught up in hopelessness because I think I’ve turned over every stone with no improvement — but in hindsight, I haven’t. I dismissed several causes I thought were very unlikely until now:
Stealthy infections, heavy metals, dental procedures gone wrong (like my 2 root canals), commandeering of my gut by bad gut bacteria, runaway viruses. All things that aren’t really easy to see or fix in a snap. GREAT.
I got some labs back last week – here they are with some recent historical numbers (month/year). The functional range (ideal) varies depending on who you talk to, but standard lab reference ranges are so wide (on account of sick people included in the calculation – fire your statistician)… you could feel like death, but “your labs show you’re a perfectly healthy person!” (How many times have we heard this before??).
It’s actually sad-funny. I used to measure my best physical performance by the time it took me to run a certain race distance. Now I measure my PRs based on my bloodwork. If you could care less or this looks like secret code then skip to the Bottom Line.
Tg Antibodies (Ab):
Translation – Thyroid antibodies
Translation – More thyroid antibodies
- TSH: 1.01 (3/16) — An indicator of how hard the thyroid is trying to work. Functional range between .9 – 2.0 – so this is good. Personal worst: 150 (hospital-worthy)
- FT4: 1.7 (3/16)
- FT3: 3.0 (3/16)
- !!! EBV (mono virus) (7/16): Positive, unknown if reactivated or currently active
- !!! A bunch of other viruses known by acronyms: Almost all positive
- !!! c4a: (7/16): 14,148 — a measure of inflammation in the body. Ideal is 0 – 2830 ng/mL.
The presence of antibodies is the smoking gun for Hashimoto’s (although you can have Hashi’s without antibodies). Once the antibodies are down to normal levels I’ll have an indicator that I’m healing or in remission. Ultimately I need to get a handle on my immune system; I just see the thyroid as the innocent bystander identified incorrectly by my immune system for this self-attack.
It’s hard for me to hear well-meaning friends and family say, “But your antibodies are at the lowest they’ve ever been! That’s a huge win!” — because I have no guarantee that it won’t be back up next time I test. I also don’t feel any better than I did when my antibodies were much higher. The glass-half-full approach feels a lot like glossing over/ignoring the factors that are making me feel so terrible (which is how I ended up here in the first place). So I can’t celebrate because it can go away just as quickly as it happened: I have a LOT inflammation going on, and inflammation keeps autoimmunity going. So, until I figure that out (which is what I would rather focus on) and start actually feeling better, the journey’s far from over.
Bottom line: Labs show thyroid condition is improving and while I’m REALLY CLOSE at no longer being autoimmune, continued inflammation will keep the autoimmune train rolling (or make it worse). I need to figure out why the inflammation is happening. I’ll be in remission and healed when I get my energy back (not when labs say I’m “fine”).
WHAT DOES C4A EVEN MEAN???!!!! (Spoiler: it’s not great news)
Lab results in green text: I spent a long time trying to figure out what c4a is. I usually cruise research journals/articles (PubMed) or trusted functional medicine practitioners’ websites, blogs, podcasts, or symposium transcripts. In reviewing my historic lab results, I stumbled upon a forgotten lab result for c4a from 7 months earlier — it was ~1,400 — ten times lower than what came out in July. What happened in the past 7 months that made that result go up so high???
Here’s what I discovered about c4a: you can die from it. Not true – but you can die from everything if you ask the internet, so I had to tread through all of that junk.
- Most docs say it’s just inflammation, that’s all. But I had some other inflammatory markers measured and they were all perfectly low.
- Functional Medicine docs who are more familiar with this area know that usual causes for elevated c4a are either harmful mold exposure (i.e., black mold in water damaged buildings) or Lyme disease.
Neither lyme nor mold would surprise me. We had $8k of water damage in our new house right after we moved in, but we dried out the walls for 6 months (too lazy to get them fixed after the damage was torn out) so it’s less likely. Lyme can come from your dog or tick bite. I’ve never been bitten by a tick but mosquitoes (did you know?? Also carriers) love me. This was deflating — as if I wasn’t already struggling enough with my current symptoms, I could have to a) tear up my house in search of mold OR b) enter battle against something tougher than what I have already. Lyme = “the great imitator” of treatable diseases because it parades as other things, so even if you’re diagnosed properly, it’s possible but extremely hard to eradicate. It’s compared to HIV in that it’s smart enough to evolve its DNA to prevent being killed off. It’s SO difficult to treat that it’s taboo in the medical profession — doctors who treat it are often pegged as quacks. Lyme disease websites protect their identities closely for fear of their ex-communication by the medical community. It’s THAT gnarly. But deep deep deep deep down, I know I don’t have a mold or Lyme issue. It’s a gut feeling.
I eventually found some really obscure talks by functional medicine practitioners discussing mold– how c4a can also be elevated because of raging viruses, & that’s more likely here since I’m playing host to plenty. I gathered up more evidence, presented my case to my doc, and she agreed that it’s the first cause we should try to treat with a low-risk effort, compared with mold or lyme.
Every minute I’m fighting fatigue and everyday symptoms, it’s reassuring to know there are other causes worth exploring and it’s comforting to have a plan. I don’t know if these will work but I’m going to learn something from this, whether they do or don’t.
- Quick Hits:
- Do a rough prelim test for mold to see if more precise testing needed (recommended by Izabella Wentz)
- Go back to eating Paleo/AIP. My experimentation with a newish eating plan led me to too restrictive of a diet & was very heavy on nuts and seeds. I feel like eating the same foods over and over again could be making me less healthy long-term.
- Get rid of some viruses — I chose & found an herbal antiviral protocol instead of antibiotics so it doesn’t destroy my gut or cause side effects. With my doc’s recommendations alongside my own research, I’m going to be slaying some viruses. It’s a 60-day protocol I’m starting next Saturday that involves antiviral supplements/tinctures like Biocidin, berberine, lysine, coconut oil, lomatium, and Takesumi (a special bamboo activated charcoal she recommended) detox to get the junk out of my system.
- Genova NutrEval test — My doc wants to know once and for all how nutrient deficient I am without any supplements. The side benefit is that this blood/urine test also includes heavy metals testing, so we might be able to eliminate it as a possible cause with the test results.
- Get my adrenals re-tested — I still see evidence that I’m having adrenal fatigue type problems. I’m considering doing the DUTCH test, which provides more valuable info than the saliva cortisol test using dried urine. It gives you the whole picture on ALL cortisol and how it’s getting used up in the body, while saliva only gives you the available/free cortisol. I’m working up to actually ordering it (sticker shock)… Let’s shoot for 60 days while I search the couch & dryer for loose change.