Just wanted to give everyone an update on this post: Hack my "mystery illness"
Since that post, a number of things have happened. First, I began an acupuncture / Chinese Medicine routine, seeing a practitioner once a week. I've also been doing weekly yoga and playing in a rec softball league once per week.
Not sure what's responsible for it, but the diarrhea / stomach pain seems to have cleared up. However, I visited the gastroenterologist BEFORE the symptoms went away, and he scheduled a precautionary upper endoscopy / colonoscopy combo exam...so that's happening in a few days. I loved the gastro, as he was very pro-Paleo and very anti-medication, so I trust this procedure will be fine.
The shakiness and tremors have subsided as well, perhaps due to some of the herbs the acupuncturist has me on. However, the chest pain/tightness and racy heart are still present, especially when I exercise. Oh, and the light and sound sensitivity are still as present as ever. That hasn't subsided one bit since January.
I saw a primary care doc this week. He was very thorough and listened to my whole story intently. By the end, he was pretty convinced that I have an anxiety issue, and he prescribed Lexapro. However, he did agree to run a few other tests, so I decided to hold off on taking that until those all came back. (I've seen Chris Kresser write about some of the gnarly effects of SSRIs, so I'm more than a little hesitant to start using.)
The doc ordered a full blood work-up, as well as A.M. cortisol and free T4. Below are what those tests showed:
Free T4: 1.67
Total Cholesterol: 208
As you can see, the cortisol was a tad high (lab range is listed as 2.3-19.4). Because of that, and the other symptoms I'm having, he went ahead and referred me to an endocrinologist, though I can't get in until mid-August. Womp womp.
Because of the chest pain / racy heart / shortness of breath, he did an EKG there in the office, and it looked good to him. A small first-degree AV block (which they saw on the multiple EKGs I had in the hospital back in July '11), but nothing else. However, just to be thorough, he decided to put me on a 30-day heart monitor. Not fun to wear, but the good news is that it should catch anything that they didn't see in the hospital.
I also saw a chiropractor to get his thoughts on the chest pain possibly being costochondritis, and he seems to think that may be the case. He believes I tore some muscle while exercising and it didn't heal fast enough, causing scar tissue to form there and get inflamed easily. He's doing some Active Release therapy on it to see if he can break it up and reduce that pain.
I'm trying hard to reconcile myself to the fact that this is largely an anxiety issue, and I've set up weekly therapy sessions starting next week.
So...that's where I'm at right now. Doing the acupuncture and yoga, taking long morning walks before work, trying to get lots of sun and spend time with friends and family, eating squeaky-clean Paleo, taking Green Pastures FCLO/BO blend, drinking Lifeway Organic Whole Milk Kefir, supplementing with magnesium before bed, etc.
Does anyone else have thoughts/suggestions? Is the anxiety causing the high cortisol, or is it the other way around?
Again, I appreciate everyone's help with this! Hopefully I'll be back to normal soon.
asked byChris_15 (55)
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on June 22, 2012
at 07:05 PM
OK, here are my responses to Stephen's questions above:
In high school I simultaneously quit playing baseball and started working (and eating) at a fast food burger joint. When I started college I decided to turn things around and eat healthy. I did the standard low fat, whole grain thing for awhile and had reasonable success (dropped 65 lbs), but then I hit a wall and was searching for more. Came across Mark's Daily Apple and realized I had found the answer I was looking for. That was 18 months ago, and I haven't looked back since.
I typically sleep OK, though lately I've been waking up around 3 a.m. every night. And yeah, when I have to pee it's generally a pretty sudden/strong urge.
Skin has been a little dry lately, but nothing crazy. No eczema. Nails look pretty normal to me. Some vertical lines from nail bed to top, but not super pronounced.
No real discernable pattern to the foggy-headedness. Comes on about once a day. Maybe after meals is worse? Not sure.
Typically pretty active, though less so lately because of the chest/heart thing. Two summers ago I worked through P90X with no problem, and I did most of the Insanity program after that. When I was in NYC I was doing MovNat every Saturday in Central Park and lifting weights 2-3x per week. Lately it's more of the Mark Sisson-style stuff. Push-ups, pull-ups, air squats. Plus the softball and yoga.
Lately I've had twitching in my right pinky finger. Lots of tingling in my hands and feet, yeah. Both arms, too, lately the left moreso than right. Combined with the chest pain, that one freaks me out.
No joint pain really, but I do get these "mystery pains" sometimes in my arms, hands, jaw. Kind of stabbing-like.
Corners of my mouth are dry. Have been for as long as I can remember. The rest of the mouth looks fine.
Body weight is fine. I've been around 165-170lbs for awhile now. I'm between 6'0" and 6'1", so that puts the BMI at around 21.8.
No iron panel done that I know of.
No B12 or folate test, either.
With all of this going on and not being able to figure it out, coupled with the constant anxiety of what's going on, I've been pretty down. Borderline depressed, and pretty irritable.
I've always been a fidgeter. I'll bounce my leg a lot when I'm sitting, and I usually rhythmically move my feet while lying in bed. I also have a habit of chewing my tongue while I work.
Haven't noticed my sense of smell change much, no.
Appetite pretty much disappeared when I started the Topamax and took about four weeks to get back to where it was before, but these days it's about 90-95% of what it usually is.
I'll be sure to mention the iron deficiency hypothesis to my doc when I see him in three weeks. I'll also mention it to the endocrinologist.
I'm still convinced this is physiological and not psychological, because the light and sound sensitivity hit first, and the anxiety came as a result of that. I've never behaved or felt this way before, and I'm tired of it. My girlfriend and family are, too.
Thanks for the advice, and I'll keep you posted!
on June 21, 2012
at 11:12 PM
try magnesium glycinate for the migraines/anxiety, or epsom salt baths. this is short term symptom relief of course.
i don't think this is all caused by anxiety/stress, although that can definitely play a part. i think more it's the other way around, that something is wrong and the body uses anxiety as a signal to alert you, but that signal can contribute to problems as part of a vicious cycle.
if you can afford it, i'd get a full stool test, and whatever other tests you have on the docket. shore up your food, avoiding anything that might trigger a gut issue flare up, and keep researching.
of course keep doing acupressure/yoga/meditation to control your stress responses, but if this came on all of a sudden, you might have an auto-immune disorder or something worse, and that's life and you'll figure it out.
on June 21, 2012
at 11:08 PM
Okay, Chris, I just read both your sagas.
I feel for you. Ordinarily, getting a "clean bill of health" should be a relief, but in cases like this, especially after seeing a whole bunch of doctors, it is more upsetting, because you just want to feel better and nothing is helping.
EDIT: I thought about this over the past day and I can't believe your ENT put you on prednisone just because he had a "hunch". That's like hunting rabbits with an elephant gun. Prednisone has wicked side effects. It should only be a last resort. Unless someone can give you a firm diagnosis and back it up, I would skeptical about future prescriptions. Sometimes doctors prescribe when they don't know what is going on because they want to give the patient the feeling that they have at least done something (enough patients aren't happy unless they leave the doc's office with an Rx). Good on you for putting the brakes on the Lexapro.
I have a hunch what might be causing your problem, because many of your symptoms sound just like mine, and I too have been in the tube twice and seen 6 different specialists, all of whom told me I was fine until the real cause of my problems was finally detected. After nearly two years! Physician tunnel-vision, I guess -- everybody looks at your issues through the lens of their specialty. Sadly, sometimes the simple stuff gets missed. On the way, a lot of harm gets done (Topamax, by the way, is awful stuff, it turns you into a dummy. The fact that you had such terrible GI symptoms from it also hints at the actual cause of your troubles.)
First things: a thyroid problem seems unlikely. For hypo, your TSH would be much higher, for hyper, lower. Both the levels you reported were very much within the realm of normal. The cortisol is also not a concern -- the laboratory reference range you gave is on the lower side, and frankly, you're anxious and not feeling so hot, so a morning cortisol that's on the high end is to be expected.
Aside from the digestive issues, I'm still battling the light/sound sensitivity. A nighttime bite guard I got from my dentist seems to have alleviated the headaches (he suspected I was grinding at night), but the dizziness still comes and goes.
I'm also moderately fatigued, have a mild tremor in my right hand, have constantly cold hands, and occasionally feel a wave of foggy-headedness come over me for an hour or two at a time.
Wow, does this ever sound familiar. That, and the chest pain, racy heart, and shortness of breath.
Before I give you any advice, though, I have some questions:
- How is your sleep? How often do you have to get up to pee?
- In all this blood work, was a simple CBC done? If so, would be willing to share your results?
EDIT: More questions, then some starting advice. Before we start, let us remember that I am not your doctor ;)
The CBC looks mostly pretty normal, although there are a couple of values that are making me think.
- What was your original motivation for going paleo? (the answer can be short :) )
- I am going to interpret your answer about sleep as meaning that you sleep okay. You say that you have to pee pretty bad upon waking. When you have to pee during the day, is it a sudden and strong urge?
- How is your skin? Smooth, moist, dry, flaky? Any eczema? How are your fingernails? Firm and smooth? Brittle? Do they have transverse ripples in them?
- The foggy-headedness you report -- does it follow a daily pattern? That is, is it more in the mornings, or more in the evenings? Or is there no discernible pattern at all?
- Are you physically active? If so, how much? (Type, intensity, and frequency of exercise)
- Do you have muscle twitching? If so, where and how much? Any tingling in your extremities?
- Any joint pain? If so, where? How severe?
- What about the corners of your mouth? How is the inside of your mouth? Any soreness or redness that is new in the last year?
- How is your weight? (What is your BMI? Take weight in kg and divide by height in (meters squared), that's the easiest way to calculate it ;) ) Has your weight changed much in the last 18 months?
- Was a complete iron panel (ferritin, serum iron, TIBC or transferrin) ever done? (It wouldn't surprise me if not, because the CBC does look pretty normal.) If not, especially given that you are not finding any relief, I would want to see this. These tests are standard, easy to do, and cheap. Ask to have them done.
- Have you had your B12 and folate levels tested? (Your red blood cells are on the high end of normal and you have a red cell distribution width that is creeping up. If you are eating a paleo diet you should be getting enough B12 but you have GI symptoms and intake does not equal absorption.)
- How are your moods?
- Do you fidget? Do you have trouble sitting still? Or can you sit calmly for longer periods? Do you have muscle stiffness? If so, where?
- How is your sense of smell? Has it changed in the last 18 months?
- How is your appetite?
The symptoms you are describing suggest a catecholamine regulation problem. The catecholamines include things like epinephrine, norepinephrine, and dopamine. These play a signaling role in the sympathetic nervous system, so when they are out of kilter you can get things like screwy thermoregulation ("constantly cold hands"), tremors, GI upset (from constipation through to noisy gut and diarrhea, stomach aches, nausea), anxiety, confusion ("foggyheadedness"), and a sensation of weakness.
Many antidepressant drugs influence the metabolism of these substances, so they often work in cases like yours. The trouble is that these symptoms can have many different causes, and by treating with, say, SSRIs, you mask those causes, they don't get recognized, they go untreated, worsen, and eventually you are at the point where things are so far gone that the SSRI doesn't work anymore.
I think you have poor dopamine synthesis. That is, you're not making enough dopamine. The fatigue, tremor, GI disturbance, weakness and anxiety would all fit with that. The question is why. A brain iron deficiency is a conceivable cause; the iron panel would help clear that up. The blood count is not immediately suggestive of an iron problem but it doesn't tell you how well iron is being moved through your system. It is possible to have functional iron deficiency, even when all the blood parameters look normal. Check out that link and watch the video until the end.
Your blood -- really mostly normal, except that your MCV and RDW are creeping up. That's why I asked about the B12 and folate. Get those things checked. If you can, either see a family doctor who is certified in internal medicine, or get a referral to an internist.
The next thing I am going to suggest is that you stop taking the fish oil for a while. DHA, even in moderate doses, will suppress norepinephrine. Have a look here and here. This helped me personally. While taking fish oil I had tremor and wicked foggy episodes, when I stopped, they improved. The amounts in fish oil capsules are almost always much higher than you could get even from a marine diet. I try to get my omega 3 from foods and minimize my omega 6 intake.
This could be an endocrine problem, too (without the results of those tests I mentioned it is harder to say) so the referral to the endo was not a crazy idea. Definitely go see him or her in August.
This condition would definitely be aggravated by stress, but remember that stress has more to do with how you perceive things than the real circumstances. If you are physically restless and anxious, then you're going to experience life that way. Plenty of people handle stressful situations fine, and I always ask the question, "what's the difference?" Shore up your physiology first.
I would be interested to see the answers to my huge list of questions, if you're up to it.
on June 27, 2012
at 02:31 PM
Yay! Glad to hear you're getting better! Don't give up!
I'll second magnesium glycinate was a great thing to help me get over some gnarly anxiety and wierd feelings. But really, if you're having the pain behind the eyes and stuff I'm not sure if milk-based kefir is a good probiotic source for you now. Kombucha was always really great and uplifting for me. I've heard of people making "water" kefir which may also be a good option.
I wouldn't go for the SSRIs. I was on one and it did nothing for me except my vision got worse when I was taking them. If magnesium isn't enough a functional MD recommended taurine and 5-HTP. 5-HTP is a precursor to serontonin. I only had to take 50 mg about once a week of the 5-HTP and 1000mg a couple times of week of the taurine, plus magnesium daily to get my levels up and seems I go now without taking any of them once getting myself balanced. Unless I exercise really hard or do an activity that makes me sweat.
I faced symptoms really similar to yours and really I wish I'd discovered the alternative route way faster/ been less keen to take the pharmaceuticals. Not that there isn't a time and a place for western medicine, but if you realize all these really strange "Diagnosis X" shows and such show all these people who went years and years undiagnosed: just shows our bodies can take much more than we think they can.
Wow and I really support the hypothesis of one of the posters that you have weak dopamine synthesis. I feel I'm really helped by dark chocolate: the stuff is just loaded with many things we need: dopamine, magnesium, and other minerals. Just don't go overboard because it does have caffeine. Start with small amounts and build up but not too high. Other foods that may help are those containing melatonin! It's cherry season and cherries are loaded with melatonin!
on June 22, 2012
at 06:15 AM
The excess cortisol is being produced because your adrenals are burnt out and do not respond to cortisol as well anymore so the body produces more. The backup is adrenaline...and that is what's causing all your symptoms of racing heart, light sensitivity, pins needles etc.
on June 22, 2012
at 03:00 AM
Chris you may want to consider using PharmaGABA by Thorne. I works great and without all the side-effects of SSRIs. Its good stuff. So is 5htp.
They work really well for anxiety. Good luck
on June 21, 2012
at 08:43 PM
Another condition to consider would be an inner ear condition such as labyrinthitis. http://en.wikipedia.org/wiki/Labyrinthitis
I had an episode of panic/anxiety that began quite suddenly in november (never had anxiety before), and someone suggested that I look into this. I had many of your same symptoms: racing heart, trouble breathing, light/noise sensitivity (sudden regular volume sounds or motions would make me 'jump' inside), digestive upset, and dizziness that has still not gone away completely. I ultimately decided that I should tackle it from the digestive side, but the information I read about inner ear infections was really fascinating (and might be relevant given your dizziness). There seems to be a strong connection to anxiety since the vestibular system sends cues about the location of objects in your environment and, through its interaction with neurotransmitters, is also partially responsible for your emotional reaction to your environment. In fact, one of the first symptoms of an inner ear infection (from which, if I understand it correctly, you would likely NOT have a fever), is a panic attack. Beyond the acute phase, milder symptoms can last for months or even years. I don't think there's much they can do after the acute phase, but it might be worth looking into.
That said, I've found remarkable improvement by modifying my paleo approach to be more of a Paleo + GAPS + low FODMAP approach. After reading lots of the wonderful information on Chris Kresser's website, I'm pretty convinced I have SIBO (which I think is quite correlated with anxiety). I'm seeing much more dramatic results through the elimination of specific carbohydrates than I did from simply going paleo (although I should note that I went gluten-free long before I went paleo, and that improvement was quite dramatic).
It sounds like you have found some good treatments for yourself, but I just wanted to throw these ideas out there.
on June 21, 2012
at 05:22 PM
This might be a totally wildcard suggestion, but have you or your doctor considered porpheria?
I saw it on an episode of House a few years ago.
on June 21, 2012
at 05:22 PM
Good for you for wanting to get this fixed. It does sound like there might be some anxiety issues, but I'm not a doctor, so I can't give advice on that. What I can say is that antidepressant/anti-anxiety medications do have a time and a place. Lexapro didn't work for me (and I gained a ton of weight), and neither did Prozac or Effexor. Wellbutrin XL worked wonders for many years while I struggled with the depression that I now think was influenced by my vegetarian lifestyle. If you decide to use the medication your doctor prescribed, stick with it for at least a month to see if it works. If it doesn't, don't give up! There may be something that can help.
I'm also very impressed by how you're integrating therapy, medicine, yoga, and accupuncture. Good for you for being willing to try such a variety of techniques to improve your life.