Mystery Diagnosis: Part 2

22F, married CC: "something is off" HPI: Patient refers intermittent episodes of paradoxical tachycardia, diaphoresis, orthostatic hypotension, longstanding issues with minor fatigue, insomnia, nausea, severe dyspepsia. intermittent globus +/- odynophagia improved with two months of gluten abstention. Lifelong symptoms? considerably worsened with onset of new job in September. PMH: neonatal dx failure to thrive, celiac? IBS? reactive hypoglycemia, confirmed GERD per endoscopy Ψ GAD? OB: G0/P0/A0 meds/allergies prilosec? unknown PE: BMI 18 Labs: Holter shows PVCs, normal CBC/K+/TSH in January Every once in a while I wonder what it would actually be like to attempt to practice medicine online and this is pretty untenable, I think. Although, it is fairly appalling what electronic medical records have done to my ability to write a quick note. Endocrinologist would be fine to start out with, I would emphasize the random episodes of tachycardia, without using the phrase panic attacks, and the nocturnal diaphoresis in particular. There's a couple of things they will probably look at, and then after that you could give the GI doc another shot. If everybody comes up empty handed, then you let the psychiatrist take a shot. If you still don't feel better, than you're left with whatever alternative medicine you're most comfortable with. Reading over your two posts, I thought it was very notable the amount of stress you placed on both food and your figure, with some discordance there, but I'm probably just over-analyzing, because that's really all we can do here.

Many of the physical symptoms you're describing sound like my anxiety attacks, which improved quite a lot when I gave up caffeine. If I were you, my next step would be getting the anxiety treated. (Also, if you have celiac or a related gluten issue, you've been malabsorbing the nutrients in your food, and 1500-1600 calories may well not be enough to sustain your body.)

OP: When I had an eating disorder I could only eat in very small amounts and it was way hard for me to hit my daily allowance even when I tried because it felt like so.much.food. Part of the recovery process for me was being forced (treatment) to eat more than I was comfortable with. I will not lie: it hurt. My stomach hurt. I was constipated. I felt nauseous. I wasn't put much over what I should have eaten normally because I didn't have all that much weight to gain (I say that now though). It took a little bit for my body to adjust but now I eat normal amounts just fine. And to note I have similar body size to you.

There are a lot of doctors who have a marked preference for underweight over over-, and who will not peg it as a problem until you're downright skeletal. It's just a thing. I'm not saying that eating more is absolutely guaranteed to solve all your problems, I'm saying you're doing an awful lot of justifying that this is normal and fine for you at the same time as you're saying that you do not actually feel normal and fine. Try, for a couple weeks, deliberately trying to increase both the size and the caloric content of your meals, just a little. Don't binge on fast food, but fry an egg you might otherwise have poached, have a little more with each snack, whatever. If it makes you feel worse and continues to do so after more than a couple days, by all means, stop. Just, you've done elimination, now, so it seems like you're at a point where adding is a totally reasonable thing to try. Like the elimination thing, it gives you another data point either way, either it'll work or it won't. But the fact that you previously managed okay on not-enough... well, your 20s are unfortunately one giant adventure in "I used to be able to do this without it having a negative effect and now it makes me feel like suck". And I'm going to ditto that literally struggling to consume more than 1600 calories a day is actually a real sign that you're not eating enough. Lots of very petite people can totally wolf down a huge meal now and then without having problems. (Which is of course how petite people can become not-so-petite, but you're not at risk of that right now.) Ramp up slowly, just see how it goes. Maybe shoot for 1700 at first, and then 1800. Not that you won't still probably have other stuff to deal with at that point, but that plus actually seeing a therapist about your anxiety will cover the basics and then you can see how you feel from there. Right now it's like trying to figure out what you've got while you were suffering from a stomach bug--you've got all these symptoms but at least part of them belong to things that aren't your mystery problem, so try to sort them first, not last.

I re-read the January post, and I wanted to ask whether you had investigated the anxiety angle that several folks brought up in that thread? It might help narrow things down. Best of luck to you!

Hi. Are you me 10 years ago? I understand the reluctance to see a therapist or psychiatrist. You are a young woman and it does sound like you have something going on beyond anxiety -- as another young woman with an autoimmune disease that went undiagnosed and which I had to advocate for for a long time. However, pursuing psychiatric treatment and counseling in tandem may have positive effects on your condition and your treatment in ways you don't expect, namely that as an anxious person you're experiencing your symptoms differently (and as more distressing) than somebody who isn't anxious. You'll probably get a better handle on it and become a better, as my therapist calls it, "symptom sensor" to give information to your doctors. Also, your doctors will take you as a more reliable witness if they can get notes from a professional evaluation because your symptoms do sound psychological. It will get that out of the way. I know it feels stigmatizing, but it's totally the opposite: being treated shows that you're willing to take care of yourself and examine the impact your anxiety is having on how you perceive symptoms. Look for somebody who specializes specifically in chronic illness. Stay far away from somebody who specializes in "health anxiety" or somaticization. They're the kind you're afraid of. Are you seeing an internal medicine doctor and do you like him/her? Can he or she spend a lot of time with you and is he or she good at diagnosis? Do you have access to a team medicine hospital or concierge doctor for diagnostics? Getting a concierge internal medicine doctor who trusted me and respected me was the key for me - I got connected to a specialist who got me first a diagnosis and then, very quickly, out of a wheelchair. This happened in 2013 and I'd been looking for answers for a long time - maybe since 2003? I'd been unable to work or barely leave the house since 2009. I traveled to see a super specialist, too. It was worth it to get my health back and to have legit evidence. I have tachycardia too, by the way, and orthostatic intolerance. It is http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome, which is http://www.dinet.org/index.php/information-resources/pots-place/pots-symptoms - I'm treated with low dose stimulants and propranolol to raise my blood pressure (it does that when your heart is beating that fast). Consider a tilt table test if you haven't had one already. That's a much more definitive test than a holter monitor, though the holter monitor means something is going on. As you can see, POTS has a lot of consequences beyond just tachycardia. It tends to mean your whole clockwork body systems are out of whack (dysautonomia). Which includes your guts - I have terrible GI problems too. Another option for treatment and diagnosis that I know is good for thyroid and endocrine disorders is seeing an "integrative" or "natural medicine" doctor (I think another school is "functional medicine"). They have different standards for thyroid, conduct very extensive testing and are also specialists at diagnosis. The woo is too much for me, but it's worth trying. You could see if any http://www.functionalmedicine.org/ doctors near you are on your insurance panel. Imperfect directories of http://www.abihm.org/search-doctors and http://holisticmedicine.org/content.asp?pl=30&sl=2&contentid=71. I caution in recommending these because I think that "supplements" &c are terrible and prey on sick people. But it could be a way to get more compassionate and thorough diagnostics if covered by your insurance. Much is made of your eating, etc. I have struggled with GI a lot -- I understand. Please don't hesitate to get compassion from a counselor who deals with chronic illness. It will not brand you. It will help you deal with the medical yuck. It sounds like you're really lost and unsure - that's scary as hell.

If eating upsets your stomach, get yourself some good digestive enzymes at a health food store, Whole Foods, or iherb.com. Made a world of difference for me!!!

Prilosec is meant to be taken daily for just two weeks, repeated only once every four months. The http://www.rxlist.com/prilosec-side-effects-drug-center.htm of Prilosec sound a lot like what you are experiencing.

Without reading your posts in detail, what do you eat? Are you vegetarian - getting enough zinc, b-12, vitamin a, vitamin d and choline? Could the nausea be from zinc or green tea on a semi-empty stomach? These are just random things I've learned over the years....