Mystery Diagnosis: Part 2
March 17, 2014 7:11 PM   Subscribe

I'm getting closer to an answer (and hopefully a more normal life) but I'm a little lost at order of steps and the best way to go about seeing specialists. I feel really lost and I KNOW something is off with my body.

This is me from January (How is it already March?)

Throwaway email: anonmefi14 _AT_

Since then I went to a gastroenterologist and got tested for Celiac. It came back negative, but I had been gluten free for a while and was feeling better overall, so I was advised to remain on a gluten free diet. I have now been gluten free for 2 months. I feel LOADS better off gluten. I have energy and am not having crashes/brain fog but I'm still having lots of other remaining issues.

I also thought I was maybe having issues with milk/lactose due to some remaining stomach issues, however I've been lactose free for almost the same amount of time (about a month or more) and actually I have the same remaining stomach problems. So I may try to slowly add some lactose back in. (I've had some things with cheese and didn't notice anything.

So, what's remaining is:
- Heart palpitations (the majority of the time) My heart monitor results said I was having Pre-Ventricular Contractions.

- Racing heart/anxiety problems - however not at times when I'm actually very anxious. When this happens my hands with also shake. I can't calm down for a long time. It will happen when I'm just sitting at my desk.

-Stomach pain/nausea/change in bathroom habits - the heartburn went away after cutting out gluten, but still getting some cramping, increased frequency and volume when I use the restroom, severe nausea at some points with burping, and bloating. (It's super annoying.)
I take Prilosec once a day for pain.

- Hunger... such hunger. I eat about what I should be calorie wise (about 1500-1600 a day.) I have to almost snack constantly, and yet I don't really feel full. I've tried eating more throughout the day as well and it hasn't helped much. I also once woke up at 3 am STARVING even though I had a snack before bed.

-Fatigue/trouble sleeping. I have a hard time falling asleep and sometimes falling asleep after waking up in the middle of the night. I also sometimes have nightmares/night sweats.

- OH! And when I had some really bad nausea for a few weeks, if felt like someone had their hand around my through constantly. It was the weirdest thing I've ever experienced. And it feels tight sometimes like it did today when I was feeling out of it.

I'm thinking my next steps are to get checked for Hyperthyroidism and H. Pylori.

I had stomach tests when I was younger but I (nor my dad) have no idea if I was tested for H. Pylori. I also supposedly had thyroid levels checked at my initial doctor's appointment (in my last question.) But I have no idea what they checked or the results. I sorta don't trust them as they didn't seem to care much about me.

I am trying to get those blood test results now but the lady at the office hasn't called back and I can't get access to my records online unless I physically go into the office, where I could also just pick up the results....

- Do I go to an endocrinologist and get more thyroid testing done AND ask them to do a blood or stool test for H. Pylori? OR do I need separate appointments for the GI and Endo doctors?
(Keep in mind I have limited time off and dental work to get done too.)

-IF I had both (that would be a bummer) should I treat the thyroid stuff first, since anti-biotics can be rough and it generally requires a high-dose for H. Pylori?
What does treatment look like for these conditions?

-Does this sound like a good plan? Do my symptoms point to thyroid or something else?

Thanks for all the help last time, and this time. I really just want to feel normal again, and I feel like I'm barely scraping by.
posted by anonymous to Health & Fitness (21 answers total) 1 user marked this as a favorite
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!
posted by Schielisque at 7:22 PM on March 17, 2014 [1 favorite]

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.)
posted by Andrhia at 7:52 PM on March 17, 2014 [3 favorites]

I'm as prone to self-diagnosis as anyone (maybe a bit more), and I definitely think we should all advocate for ourselves, but I think you should give your GP another chance. Sometimes there's a personality or communication mismatch, and one or the other has to maybe work a bit more to frame the conversation. But a doctor who's maybe not naturally a hand-holder or explainer can be great at doing the actual diagnosing and treating part.

I wouldn't want results over the phone or online, because, what do I know? At a follow-up, you can ask what was tested and why, and ask them to explain the results. Your doctor will be able to contextualize them, after all. And that is the person who should be helping you navigate your care.

If you're really unhappy with this doctor, find another. Ask everyone you know for recommendations for a thorough doctor who's great at communicating and open to people who read stuff (that's if this how it works where you live, e.g., if it's possible for you to sign up with a specific doctor vs a practice).

How tall are you? 1500-1600 calories sounds low to me if you're at least average height, moderately active and not trying to losing weight. I'm 5'7, 133 lbs and at my (average) activity level can't sleep on fewer than 1800 cals, 2000 preferred.

(I think most doctors will test thyroid if it's at all in question, it's not like it's an obscure test - my doc checks for it often)
posted by cotton dress sock at 8:07 PM on March 17, 2014

I could have written all of your symptoms. I ended up being treated for hypothyroid and some of the issues cleared a little, but most remained. My very kind GP kind of had to keep insisting that my anxiety was playing a huge role in all my physical symptoms, but she was willing to explore all options. I absolutely refused to believe that I did not have some combination of diseases. Some of the time I didn't even feel 'anxious', so how could that be the problem? But I was still miserable. The hand around the throat choking feeling is the worst! Little by little, the worst of my anxiety resolved. As did those physical issues. I had to admit that my doctor, specialists, friends and family were right.
I'm not saying you may not have very real physical issues. I just want you to know that I have felt the exact same way (same tests, etc) and I finally found a resolution.
posted by Cloudberry Sky at 8:27 PM on March 17, 2014 [1 favorite]

If it's not straight-up anxiety, your symptoms do sound like they could be hyperthyroidism. The gateway you need to start with this--and the H Pylori test as well--is a G.P. Those are both very simple preliminary blood tests any internist can order and interpret.
posted by blue suede stockings at 8:41 PM on March 17, 2014

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
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.
posted by hobo gitano de queretaro at 9:00 PM on March 17, 2014 [4 favorites]

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....
posted by icanbreathe at 10:02 PM on March 17, 2014 [1 favorite]

Everybody's different, but I am pretty much not capable of dropping the amount I eat below a certain point before food pretty much rules my entire universe and I never think about anything else, so I don't think it's shocking at all that at ~1500 calories you're usually hungry. Your weight as given before is really seriously on the low side, and if you're only eating that many calories still, I think your body is trying to tell you something. Anxiety correlated heavily with the worst of my eating disorder. So did generally feeling like crud and like my body didn't want to digest anything, ever. Internet BMR calculator + Harris-Benedict indicates that to maintain body weight, you should actually be consuming closer to 1800 calories a day if you're just lightly active, and a bit more if you were closer to 115. I have no idea where you're getting this idea that you need to be under 1600 if you're already at very low BMI, but it's no wonder you feel lousy under the circumstances.

I'm not saying you have an ED, it may be that you've just got some wrong ideas about what you need to be consuming to support your body, but seriously, try bumping up to 2000 for awhile and I bet a lot of things will work better. The reason you keep feeling like you're starving is that you are not actually getting sufficient fuel, so, well, you ARE starving. There may absolutely be other problems, but it's going to be harder to see what the real problems are while that one's still going on.
posted by Sequence at 10:42 PM on March 17, 2014 [7 favorites]

Seconding icanbreathe - if you are taking any supplements, stop - or stop them one at a time. Although I continue to take some vitamins, when I tried Niacin, I felt simply wrong to the point I thought I had a dread disease, and I didn't make that connection for several weeks. Maybe that's not it, probably that's not it, but worth looking at for sure.
posted by rainbaby at 4:02 AM on March 18, 2014

Neither I nor my wife are doctors. This is all entirely anecdotal and reflects a single person's experiences. She has/had/or developed two conditions: Low thyroid and gluten intolerance.

Without the (low? 995 sure its low) thyroid, she is incredibly sleepy, sluggish, irritable, and can sleep all day, every day. We had issues with doctors going 'oh, thyroid check is in normal range. low normal, but normal, so you're fine!' however, the doctors that said, basically, that range is BS and thyroided her up seem to have successes on eliminating symptoms. I believe they send her for testing every six months, and adjust the dosage if needed then.

On gluten, she can be irritable, moody, gain weight fast, have stomach and bowel issues.

If I had to diagnose her tachycardia, I'd call it 30% genetics and at least 50% anxiety (love you dear)

With migraines I see nausea, muscle tension, irritability, sound and or light sensitivity, and dehydration type symptoms.

Medications can have weird, weird unintended side effects. Carefully read the label on anything you do take.

So... kinda rambling but tl;dr: get that anxiety checked. If you do have thyroid issues, find a doctor who really knows their thyroid stuff. Not all doctors are equally compatible and or good. Did you start a psych hunt yet? It is astounding how much mental issues can cause/contribute to/exacerbate physical issues. Best of luck. Medical stuff is no fun.
posted by Jacen at 5:44 AM on March 18, 2014

Sounds like textbook hyperthyroid to me (although IANAD). In your situation, I would find an endo and tell them that you are having heart palpitations, hand tremors ("When this happens my hands with also shake"), insatiable hunger, difficulty sleeping, stomach issues, night sweats, and anxiety.

Do you have any family history of thyroid issues (either low or high)? If yes, mention that also; some types of thyroid issues can run in families.

Also, have you noticed any muscle weakness, especially in your thighs and upper arms? Or any unexplained weight loss? Those would also be consistent with hyperthyroid. As would difficulty swallowing.

It's not uncommon for hyperthyroid to get misdiagnosed as anxiety, so I'd start with the thyroid possibility before moving on to anxiety. For example. (Also, I wonder if your doctor ran TSH as well as free T4 -- it's possible for free T4 to be only slightly elevated while TSH is in the toilet, because different people respond differently to different levels of T4. Maybe your T4 is only slightly elevated and they didn't run TSH. But that's me speculating.)

The good news is that if it is hyperthyroid, most of the causes have a good long-term prognosis. They may even be able to get you on beta blockers to control the heart palpitations right away while diagnosing the cause.

Also, while this sounds totally random -- I'd avoid seaweed (including sushi with seaweed) until you have a firm diagnosis or hyperthyroidism is ruled out. Diagnosing the cause of hyperthyroidism involves an iodine reuptake test, and some places won't run that until you've abstained from seaweed for at least a week/month/some other time frame. Not eating seaweed may speed up the diagnostic process for you.
posted by pie ninja at 6:17 AM on March 18, 2014

Here's a thought exercise for you. What if I told you that your symptoms would go away if you ate more and gained weight? Would you do it, if it meant a cure for you?

If you wouldn't, you need to be evaluated by a mental health professional. Not because being thin is a bad thing, but because you may be sacrificing your good health for an unrealistic weight.

Being under-weight can bring on some of the symptoms you describe. Have any of your doctors discussed your weight with you? It could very well be that your anxiety and your obsession with your body, calorie counts and food can all be linked and can account for your physical symptoms.

So now is the time to revisit those issues. Now that we've ruled other things out.
posted by Ruthless Bunny at 6:24 AM on March 18, 2014

Prilosec is meant to be taken daily for just two weeks, repeated only once every four months. The side effects of Prilosec sound a lot like what you are experiencing.
posted by Carol Anne at 6:32 AM on March 18, 2014 [1 favorite]

Have you kept a very strict food diary? That way if it is food related, you could associate food with symptoms. It does get tricky though since some foods, like FODMAP, don't immediately cause symptoms. Nightshades, grains, soy, HFCS, legumes, FODMAP, etc etc, there are a lot of things that can mess you up and you'd never suspect them.
Best of luck to you!
posted by Neekee at 6:48 AM on March 18, 2014

From the OP:
Thanks for all the insight so far.

Regarding weight: As mentioned in the last thread, I'm an extremely petite person. I am 5'4" and weigh 105/106 ish. I wear a small/X-small top and a women's 2-4 pant. I'm a shoe size 6. I didn't even get to over 100 until barely in college. If you see me you'd see that I'm just very small framed (bone-wise.) and I'm not busty which is where a lot of women carry weight (mine's all in my hips and thighs).

I only mention how much I eat because the first thing to try after" I feel lightheaded and tired and my heart is racing" is "eat more." I only track what I'm eating maybe once a week and I eat when I'm hungry. I use my fitness pal and am recommended barely over 1500 calories to maintain weight and I try to eat over that. Since I'm a small person I can only eat a little at a time and large meals upset my stomach more. I eat breakfast at 8, snack or two between 10 and 11, lunch between 11 and 12, second lunch around 2 to 3, snack on the way home, then dinner as soon as I can, then more food. The constant hunger thing is a new symptom and it shows up especially at night. I have only been tracking food for diagnostic and elimination diet purposes, which is how I guessed that I may have a problem with gluten.

I have never had a doctor be concerned about my weight and I was overjoyed to be nearly at normal BMI (although BMI doesn't account as much for body types such as mine where this is a normal weight for me.)
posted by goodnewsfortheinsane at 6:48 AM on March 18, 2014

Make sure you are eating enough fats, too.
posted by Neekee at 6:49 AM on March 18, 2014

If eating upsets your stomach, get yourself some good digestive enzymes at a health food store, Whole Foods, or Made a world of difference for me!!!
posted by Neekee at 6:51 AM on March 18, 2014 [1 favorite]

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 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.
posted by AlexiaSky at 7:00 AM on March 18, 2014 [2 favorites]

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 POTS, which is very misunderstood - 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 functional medicine doctors near you are on your insurance panel. Imperfect directories of integrative medicine and holistic medicine. 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.
posted by sweltering at 7:15 AM on March 18, 2014 [1 favorite]

Make sure you are well-hydrated, as even minor dehydration contributes to tachycardia. While you investigate the cause of your anxiety, treat the anxiety. Meditate twice a day and work on managing stress. If at all possible, get outdoors daily, and get exercise daily. Get your Vit. D level checked; it's a very common defiency. Make sure you get fiber and some protein at breakfast to help deal with what sounds like low blood sugar in your previous post. Eat some healthy fats - maybe nuts - because your body needs some fat.
posted by theora55 at 7:20 AM on March 18, 2014

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.
posted by Sequence at 7:49 AM on March 18, 2014 [1 favorite]

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