Sunday, January 6, 2019

a health summary -- LONG POST

If you're only reading this blog for information on my writing, you might want to skip this post. It is a long story full of honesty that you may not want to know.

I'm going to say something about my health journey. I am documenting this in the hopes that others who have dealt with similar issues or who are dealing with them can maybe find some guidance from my experiences. I write these posts because I had to do a lot of searching and because there was nothing providing the solutions for me; all I could do was pray, research, and experiment on myself. I've written about them before, but things are different now; I have resolved most of my issues that plagued me for the last several years, some even longer.

All I wanted was to feel good.

I can't describe the frustration and the misery I've suffered, because doctors told me I had IBS and I needed to take antacids or that what I was experiencing was all in my head, so they prescribed anti-anxiety medications and/or anti-depressants. And all the naturopaths were into the latest methylation knowledge. The doctors were the worst, which was why I was seeking alternative medicine and, while helpful, it didn't have the answers either. I ended up helping myself by researching and guiding the people with the medical degrees to the root cause.

We have to be our own advocates. We live in our bodies 24/7/365 and can't take a break, and no one medical professional has all the answers. In fact, none of them are infallible, nor can they read minds. They can only work with what we give them. And do NOT ever let them tell you it's all in your head! When that happens, walk away and never return! There is a reason it is in your head, but that is likely not where the problem originates. So, keep digging, keep researching, keep pushing until you find someone who listens and digs to the root of the problem. Follow the symptoms, keep a journal, and keep copies of all medical tests.

I dumped my primary care physician who told me it was all in my head. He failed me. He could have stopped the problems before they ever exploded into the mess that they became.

Down the rabbit hole

Everything erupted in April 2015 with symptoms that started in my head--dizziness, anxiety, foggy brain (don't know how I managed to get to work, much less got anything done), and a strong feeling that I should kill myself. I didn't want to, but something weird was going on, and it worried me enough that I went to the ER a couple of times. I knew there was something wrong in my body, because this was so unusual for me. I had just come off of a winter with strange bowel symptoms and then had a cold. Right after the cold, I had this explosion of symptoms. After a week of this, I went gluten-free, thinking maybe after all the bowel symptoms that was the answer. It helped, but not fully (and as I've learned since, it may not have been the gluten but something else in those products).

I followed up after the first ER visit with my regular women's nurse practitioner, who ordered some bloodwork that all looked okay. I also went to see my PCP (the jerk who in that visit told me it was anxiety and all in my head.). Anyway, because of my bowel issues over the winter and some family history with other issues, he ordered some tests, which of course came up negative. If there was celiac disease, I had been off gluten for a month, so there wasn't likely to be anything. And he quit there when he should have dug deeper. The real answer was more stealthy but quite common.

Throughout the summer, I continued to look for answers, exploring dietary restrictions. I thought maybe it was histamine intolerance but that was hard to determine. I did get my PCP to run a full thyroid panel, which revealed elevated TPO antibodies and a climbing TSH, both of which he discounted. (One of my brothers had Graves Disease.) The Hashimoto's symptoms were there, however, and still are. That will always be a part of my life. During that summer, I also experimented with new foods to make up for the ones I had removed from my diet, which was a good thing--I discovered some new favorites. However, I also embraced the autoimmune diet, which proved to be flawed. It caused more problems than it solved in the long run. (Search for "oral intolerance" for more information on the problems that restrictive diets can cause.) Sometime in 2016, I abandoned that but was still careful about how I ate.

So, I knew I had a thyroid issue, even if my PCP didn't believe it. Because of his resistance to helping me and my continuing slide into feeling worse, I sought out alternative medicine.

That's when I tried the naturopath. She did muscle memory stuff, which I'm not sure I believe in. It was interesting to experience. She also suggested some strong supplements. We did a candida supplement, which didn't hurt anything (I had been a sugarholic before my health crash). And she recommended L-5-MTHF aka methylfolate, or the active form of B9. That's when things went from tolerable to worse. My sleep crashed, and soon, I started feeling like I couldn't get enough air and had to yawn more frequently and/or take frequent deep breaths just for that one satisfying breath. If you've never experienced this, count your blessings! It is a miserable sensation. The term "air hunger" is the closest way to describe it.

I then had one of the worst winters of my life. By January of the new year, I was sleeping only 3 hours of every 48. That's when things got dire for me. After a month, I quit the supplements and got some sleep help. I didn't get much sleep, but a few hours every night was better than a few every other night.

By this time, I had given up on the naturopath and found a new medical professional, a nurse practitioner at an independent clinic for women. We did all sorts of testing and hormone balancing, which helped a little but not enough. And we continued to monitor my thyroid. By then, my thyroid hormones were completely off with FT3 high and FT4 low with TSH unreliable at best. One thing I found in researching the cause for that was liver issues, but my CBC tests always came back with good levels of everything, except the high eosinophils (usually at or just above the high end of the lab range), which can be part of autoimmune diseases (Hashimoto's in my case).

We tried different supplements through all this and found that I was super sensitive to everything, which can be an indicator of underlying liver issues. Lab tests didn't show any liver problems though.

I also tried visiting a specialist for the sleep, a pulmonologist. Because of the air hunger (and a family history of COPD), he suspected asthma. The inhaler did NOTHING for me. But he was the first doctor to notice the faint yellowing of my skin--my bilirubin has been in the upper end of the range on every CBC the last few years. I had asked a couple of the medical professionals about that before and they shrugged it off.

Pieces start coming together

I love my NP--she's great--and I still use her as my primary care provider. However, someone had suggested another integrative medicine clinic to me, so I tried them. They also did a lot of different testing and we found some things, which I coordinated with the NP.

I had complained to the integrative clinic in spring 2017 about the regular dull ache in my lower right ribs, so they ordered an ultrasound to check for gallstones. That found none. That pain had been there for several years and had been getting more regular. I had already given up pizza and pasta before 2015 because of what had been diagnosed as IBS (severe abdominal pain with diarrhea that got so bad after certain foods that I couldn't eat those things anymore, and sometimes other foods).  That had grown worse over the years since my mid 30's, along with the occasional chest pain, which always scares the doctors into chest x-rays to check the heart--I've been perfectly healthy. That was just another clue of the real problem.

By late spring 2017, the integrative physician prescribed levothyroxine. That helped tremendously, but it didn't totally resolve all my issues. Nevertheless, I felt so much better as my FT4 levels came up with slowly increasing doses. Yet my FT3 levels also continued to go up, even above range. Something weird was going on.

Although sleep was much improved on levothyroxine, it still wasn't great. And I continued to have that darned air hunger. Every time I thought I had it figured out, it would come back. And finding the right dose of levothyroxine was such a balancing act, but they let me figure out what worked based on my symptoms. It was never stable, though.

The picture becomes clear

Fast forward a year and other pains that had been sporadic started becoming regular--the pain in my lower right ribs, pain between my shoulder blades, nausea, bloating, etc. Some of my symptoms were no longer as bad as they had once been--I don't know if my body had just adapted or changing my diet had helped that much. The problems grew worse over the summer and when I told my NP, she suggested a HIDA scan. That revealed the source of years of problems--a low functioning gallbladder. Actually, almost non-functioning by then! It was that bad after all that time. The signs had been there all along but had been ignored.

I didn't wait but took her referral for the the surgeon and got that thing removed ASAP. In early October, that sucker came out! What a relief it turned out to be! I recovered quickly--walking slowly the day after surgery to work out the gas pumped into me for the laparoscopic removal, no pain meds needed, and back at work in less than a week. The day after surgery, my head was clearer than it had been in a long time, I started sleeping better, even without sleep meds. I also have had to wean off/ down to a low dose of the levothyroxine (still figuring that out). I can only speculate that the backed up bile was causing some damage to the liver that imbalanced the thyroid (hormone sensors not working and over-converting to FT3?) and caused holy hell on how I felt all over.

While the air hunger improved, it wasn't completely gone, and then I was also having symptoms of reflux. But I was able to eat a lot more foods again. I had had reflux off and on for years. I never realized until researching and learning that it was as easy to correct as bringing my calcium levels up.  However, I had problems with that too, until I found a magnesium complex and took that regularly. (Calcium was overstimulating until I balanced it with magnesium.) One more problem solved. I couldn't take magnesium without problems until that gallbladder was out.

Because sleep has still been an issue to some degree, I experimented with supplements and found that a moderate dose of B6 in the morning with a small amount of B12 and B2 really help perk me up during the day and wind down at night. I was slowly adding the B's back. And that's how I discovered the truth--B1.

Things started to gradually improve, starting with my sleep. I tried other things at the same time that I thought were helping but not consistently. So, I increased B1, and my health continued to improve, including the diminishing of the wretched air hunger feeling, although it took a few weeks. I can now breathe without that feeling like I'm not getting enough air, although there are certain foods and supplements that can still affect that but to much lesser degrees than before, and even that is going away. I suspect the link there is that the anti-nutrients in the trigger foods are those that block thiamine usage by the body; getting my levels up and my body healed seems to be eliminating that problem. I had given up gluten products, and those are usually fortified, and I wasn't eating much of other sources of this necessary vitamin. This is one reason why a balanced diet is much more important than a restrictive diet (although dairy definitely bothers me and grains are iffy). I also feel that methylation (methionine-based) protocols aren't right for everyone, even those with the mutations that reduce those processes. While I'd had increasing anxiety issues over the years, the air hunger didn't really start until soon after I had started taking the methylfolate form of B9, but I had been on a restrictive diet for several months by then. Nevertheless, hey are still too much for me now--too stimulating.

So, I have gotten to the root of all those issues that came up over the last few years, peeling away the layers of added problems and getting to the root--the gallbladder. While I am upset to think that my idiot PCP could have taken care of that long ago, before all the other problems and could have saved me lots of $$ in medical expenses searching for relief, I have learned a lot over the course of this journey that I can pass on to others.

Now, my only health problem is that I am a middle-aged female with Hashimoto's. I can deal with that. (And here's another tip I've learned from experience -- Vitamin D's link to autoimmune disease may be misinterpreted. See for an explanation of why I probably don't feel good taking much of it--After a few days in a row, I feel like my autoimmunity is flaring up rather than settling down.)

Edit: I finally completely eliminated the air hunger by supporting my adrenals and avoiding foods that I tested sensitive to.

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