I’ve mentioned before that it seems like everything is happening all at once, now that things are happening generally. Over the last few weeks, I’ve had two different sets of bloodwork, three sets of x-rays, an ultrasound, and visits with three different specialists in addition to my PCP. I also have two MRIs scheduled for this afternoon, and took a breathing metabolism test this morning.
Honestly, it’s all been a bit much, a bit too smushed together, after years of being unable to get anything done. But at least most of the initial testing is over, and I’m starting to get some results.
Note: This will be long. Feel free to skip. I just like to keep all this in one place.
Bloodwork, Part 1
In these labs, I was getting my normal numbers tested (cholesterol, blood cell counts, etc) as well as special tests for iron/ferritin (for my potential hemochromatosis) and inflammation tests (post-devil-bed). My iron/ferritin levels both came in on the low end of normal, which is amazing news as they tend to be off the charts high. Yay! My inflammation numbers were mixed – one test still shows very high inflammation, the other marker dropped into the normal range for the first time since I began sleeping on the Devil Bed. My take on this is that something is still causing inflammation, but at least it’s not “you’re breathing in a substance you’re allergic to every night” level of inflammation. Otherwise, I noticed a very important trend that helped me pinpoint the cause of some issues from the last six months.
The short version goes like this: my triglycerides dropped a ton, and my fasting glucose went WAY up. This is what happens when I start eating a lower-carb, higher-fat diet. (Yes, the glucose bit is unusual, but that’s the pattern my body has shown for years now.) After seeing this, I had a little ah-ha moment. I switched to eating more whole foods – which trend toward a lower carb, higher fat diet – about six months ago. This was around the time when I got injured, started gaining weight, started struggling with depression again, and felt fatigued and heavy all the time. Immediately after seeing these results, I switched up my diet again and started eating 50+% carbs ever since, and the difference is startling – I’m happier, I have more energy, I want to go out and do things again, and my body feels soooooooo much better.
My doctor’s take: We need to figure out why that one inflammation number is so high, so I’m being referred out to two new specialists: a rheumatologist and a GI doc. She worries that 1) I still have some kind of autoimmune issue causing inflammation, and 2) my body may be struggling to absorb certain nutrients, or it has a food allergy causing issues, hence the weird reaction to the lower-carb diet.
Bloodwork, part 2
My endocrinologist gave me a cortisol suppression pill to take the night before my fasting bloodwork, to test my cortisol as a way to check for Cushing’s. The cortisol level came back extremely low. Honestly, I could have skipped the appointment. It was clear that I didn’t have Cushing’s. But I thought maybe the endocrinologist might do more tests or ask more questions. Instead, after I waited 90 mins past my appointment time to be seen, she began by asking me (again) if I’m tracking my food properly and honestly. When I affirmed, she told me I didn’t have Cushing’s and asked if there was anything more I wanted her to look at (as if I have any clue what other things endocrinologists look at??). When I didn’t know, she suggested perhaps I was just a person who needed to be really strict with my food. I cut the woman off immediately. Honestly, I’m not sure how I managed to speak so strongly, but I did. “No! That’s not it. The problem is that I’m dealing with massive inflammation and we can’t seem to find the cause. Inflammation affects your body’s ability to lose weight, and so until I can find the root of this, weight loss efforts aren’t going to work.” She agreed…then asked if I’d ever thought about trying a phone app to track my food. There aren’t words to describe the rage. I got out of there as quickly as possible.
Years and years ago (2007), I was given Lupron injections to see if that helped with migraines. (It didn’t. I later found the cause of the migraines myself. Of course.) One of the side effects of the Lupron was that I got these lumps under my ribs that hurt when prodded. They grow and shrink but are always there, and the pain on being touched is a weird pain, like I’m poking into an organ. I’ve mentioned them to doctors in the past, but not one (until recently) has even bothered to feel them. My newest doctor did, and was quite alarmed by them (and the fact that they’ve been there for almost 14 years now!), and ordered an ultrasound. Unfortunately, the ultrasound showed…nothing at all. No reason why these baseball-sized portions of my flank are so painful to the touch that I literally went through body-shock from my ultrasound. So next up is a CT scan. Probably eventually another MRI. Sigh.
I’ve had a fibrous ganglion cyst on my wrist for a bit over a year now, and while it shrank and kinda went away off and on, I finally needed to get it looked at. X-rays showed the bone structure is normal, which I guess is good though honestly I didn’t expect otherwise. The doctor I saw offered to just give me a steroid injection for the pain (um…no?), or to get an MRI so we could see the stalk and possibly get the thing surgically removed. Honestly, I’m not sure I’m going to go through with the surgery, especially as my experience with the doc and her office was terrible, but the MRI is approved so I’ll get it later today and I’ll update this post later when I get results. **ETA: I won’t get these results until I can see the doctor, and she’s not available until May 14th ugh.
My left foot began to swell and hurt in a weird way back in October. Either I have a stress fracture or soft tissue damage on the top of my foot. I saw my primary doctor, then got a normal x-ray (showed nothing), then I went to a specialist. They took weighted x-rays which still showed nothing – though ironically, they could see where the old break was in 2015-2017! – and then ordered an MRI. That, too, will be later today, and I’ll update this post when I have results. **ETA: So I did my foot MRI, and then an hour later got a call back because they took the wrong pictures. Though in reality, they took the right ones, but for some reason my dr ordered MRI of the heel instead of the top of the foot where the problem is. I had to go back in to get an heel MRI later the same day, and hope that the doctor will look at the part of the foot that’s actually suffering… **ETA: The doc refused to give me my results until I could see him at the end of April, so I called and got them directly from radiology. They show no fractures or damage, so I still have no answers as to why my foot is doing this weird thing.
HEB has opened wellness/health clinics at some of their locations, including the one my family shops at. They offer multiple services including metabolism testing (a 10 minute fasting breath test using indirect calorimetry, the gold standard of metabolic testing!). I’ve wanted to do one of these breath tests for ages – the Lumen I reviewed last year was initially supposed to provide daily breath metabolism tests before it became a frickin’ keto device instead, ugh – and I finally got to do one this morning! I had to be fasting with no exercise or caffeine for at least four hours beforehand, and basically I had to use heavy duty nose-plugs and then breathe into a tube for 10 mins. It was uncomfortable – mouth-breathing tends to dry my mouth a lot – but worth it.
Result: my RMR is 2218 calories. That’s how much I burn at rest. Estimated energy expenditure daily, with 30 mins of moderate exercise, is 3112 calories per day. A general “weight loss” zone calorie range for me would be 1900-2200 calories daily, or a bit more if I’m doing longer exercise days like those 2-hour hikes! I was told that I should absolutely not eat below 1800 calories without being under medical supervision. Furthermore, compared to other women my age and size, my metabolism is showing 20% faster than average. All of this is exactly what I would’ve guessed, and that 1900-2200 range for weight loss? Exactly what I’ve been shooting for when I’m tracking my cals. (Take that, stupid endocrinologist!) The whole experience was lovely. The registered dietitian I worked with was kind, well-informed, and appreciative (and acknowledging) of my personal body knowledge.
(My Garmin, for the last month, has given me a daily expenditure ranging from 2539 to 3813 depending on my activity that day – I thought it was overestimating, but it averages ~3000 so it looks like it’s spot on! It estimates a daily RMR of 2197, which is incredibly close to the breath test! Go Garmin!)
Still to go
MRIs and their follow-ups later today and the next few days. CT scan of the abdomen. Rheumatology. GI specialist. I might go back to HEB for an in-line body scan as well, because I’ve had several of those in the past and I like to track the changes over time!
My iron levels are usually too low – it’s a shame we can’t even them out between us! Glad you’re getting some answers.
It seems like a lot of women end up in the low-iron category, whereas I have to give blood regularly and avoid things like cast-iron cookware for life…sigh.
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