YANMD what could be going on here?
December 8, 2015 10:01 PM Subscribe
I have health insurance and a doctor but it’s been almost a year without figuring out the problem. I am not sure what else to do at this point. Long description of symptoms and tests below.
I have been having intermittent episodes of lightheadedness. That is I feel weak and like I need to sit down (It’s not dizziness, the room is not spinning). It comes sometimes with nausea and seems to be aggravated by other things that make me feel ill - being too warm and being in stuffy spaces definitely can bring it on, being sleep deprived. It sometimes is accompanied by a pang around my stomach on the left. It makes me feel hot and ill and tired.
I have health insurance and a doctor but it’s been almost a year without figuring out the problem. I am not sure what else to do at this point. Long description of symptoms and tests below.
I have been having intermittent episodes of lightheadedness. That is I feel weak and like I need to sit down (It’s not dizziness, the room is not spinning). It comes sometimes with nausea and seems to be aggravated by other things that make me feel ill - being too warm and being in stuffy spaces definitely can bring it on, being sleep deprived. It sometimes is accompanied by a pang around my stomach on the left. It makes me feel hot and ill and tired. Rest and going to a cooler location helps. (we’ve ruled out menopause / hot flashes) A complicating factor is that I am extremely heat sensitive - I have to use fans or a/c when it’s hotter than 80 outside. There hasn’t been a pattern that I can find with blood sugar or blood pressure or being dehydrated. When I’ve taken my blood pressure during an episode it’s usually normal to high, not low. We thought that changing my blood pressure medicine had helped, removed 1 part of a combo drug but the symptoms have started again. I’ve also occasionally felt palpitations but my doctor says they’re normal - described as feeling like a frog in your chest, no heart racing.
My regular health issues are type 2 diabetes which is controlled, high blood pressure (controlled ok but they took me off 1 med so it’s higher now but usually <140/95. I have high cholesterol which is controlled ok by drugs.
I’ve had the following tests since late Jan and was told that they didn’t show anything that could cause the symptoms.
bloodwork - general cbc, aic, all diabetic blood tests have come back as normal, hormone test rule out menopause
other tests ruled out kidney infection for the pain on my side / back on the left side
heart tests - EKGs multiple that were normal, some were during episodes
48 hour holter monitor - was during an episode, was fairly sedentary and found only a very few off beats that were considered within normal.
Heart echo was normal.
cat scan - normal
blood pressure readings - did the test where you sit, lie down and stand and those showed no problem, some in office reading were quite high but they were closer to normal by the end of the visit. now is mostly <145/95
We've been trying to figure this out since late Jan / early Feb. I’ve seen my primary care doctor, a neuro at a headache clinic (to check for migraine), my endocrinologist (does not believe it is diabetes related), some of my results were referred to a cardiologist.
Have you ever had similar symptoms? Did you figure out anything that helped?
I feel like I am not sure what to try and check next. It’s again getting hard for me to get out of the house, and get to work.
I may also be looking for a new primary care to see if there are things my current doc hasn’t tried. Any recs for doctors in San Francisco also ok.
I have health insurance and a doctor but it’s been almost a year without figuring out the problem. I am not sure what else to do at this point. Long description of symptoms and tests below.
I have been having intermittent episodes of lightheadedness. That is I feel weak and like I need to sit down (It’s not dizziness, the room is not spinning). It comes sometimes with nausea and seems to be aggravated by other things that make me feel ill - being too warm and being in stuffy spaces definitely can bring it on, being sleep deprived. It sometimes is accompanied by a pang around my stomach on the left. It makes me feel hot and ill and tired. Rest and going to a cooler location helps. (we’ve ruled out menopause / hot flashes) A complicating factor is that I am extremely heat sensitive - I have to use fans or a/c when it’s hotter than 80 outside. There hasn’t been a pattern that I can find with blood sugar or blood pressure or being dehydrated. When I’ve taken my blood pressure during an episode it’s usually normal to high, not low. We thought that changing my blood pressure medicine had helped, removed 1 part of a combo drug but the symptoms have started again. I’ve also occasionally felt palpitations but my doctor says they’re normal - described as feeling like a frog in your chest, no heart racing.
My regular health issues are type 2 diabetes which is controlled, high blood pressure (controlled ok but they took me off 1 med so it’s higher now but usually <140/95. I have high cholesterol which is controlled ok by drugs.
I’ve had the following tests since late Jan and was told that they didn’t show anything that could cause the symptoms.
bloodwork - general cbc, aic, all diabetic blood tests have come back as normal, hormone test rule out menopause
other tests ruled out kidney infection for the pain on my side / back on the left side
heart tests - EKGs multiple that were normal, some were during episodes
48 hour holter monitor - was during an episode, was fairly sedentary and found only a very few off beats that were considered within normal.
Heart echo was normal.
cat scan - normal
blood pressure readings - did the test where you sit, lie down and stand and those showed no problem, some in office reading were quite high but they were closer to normal by the end of the visit. now is mostly <145/95
We've been trying to figure this out since late Jan / early Feb. I’ve seen my primary care doctor, a neuro at a headache clinic (to check for migraine), my endocrinologist (does not believe it is diabetes related), some of my results were referred to a cardiologist.
Have you ever had similar symptoms? Did you figure out anything that helped?
I feel like I am not sure what to try and check next. It’s again getting hard for me to get out of the house, and get to work.
I may also be looking for a new primary care to see if there are things my current doc hasn’t tried. Any recs for doctors in San Francisco also ok.
This has almost certainly already been investigated, but since I don't see a mention of it-- have you had thorough thyroid testing?
posted by charmcityblues at 11:26 PM on December 8, 2015
posted by charmcityblues at 11:26 PM on December 8, 2015
Have you had your thyroid checked? Parathyroid and calcium levels? Adrenal glands? What happens t your blood pressure when you stand up?
All those can cause heat intolerance and dizziness and nausea. Was the CAT of your abdomen? Did they check your pancreatic related levels?
Just as a related note: I have POTS (and probably some other crap) My echo and heart monitor are"normal" even though I get tachycardia and palpitations. Took a long time to get just that part diagnosed...
Anyway, keep pushing and start tracking your symptoms, medications, blood sugar levels, and foods. I have food intolerances that make it all worse. That should give you really solid symptoms and options too. Then you can say how long symptoms last and if they coordinate with any activities, etc.
For POTS you can do an at-home basic test. Lay down for 15 mins, stand up for 15 mins, check your blood pressure and heart rate every few minutes. I got a blood pressure cuff online for about $40.
posted by Crystalinne at 11:29 PM on December 8, 2015 [2 favorites]
All those can cause heat intolerance and dizziness and nausea. Was the CAT of your abdomen? Did they check your pancreatic related levels?
Just as a related note: I have POTS (and probably some other crap) My echo and heart monitor are"normal" even though I get tachycardia and palpitations. Took a long time to get just that part diagnosed...
Anyway, keep pushing and start tracking your symptoms, medications, blood sugar levels, and foods. I have food intolerances that make it all worse. That should give you really solid symptoms and options too. Then you can say how long symptoms last and if they coordinate with any activities, etc.
For POTS you can do an at-home basic test. Lay down for 15 mins, stand up for 15 mins, check your blood pressure and heart rate every few minutes. I got a blood pressure cuff online for about $40.
posted by Crystalinne at 11:29 PM on December 8, 2015 [2 favorites]
This is definitely ask a doctor territory but yeah, I've had similar physical feelings and they were the beginnings of panic attacks. Sweaty, needing to sit down, lightheadedness for me mean it's time to really up the self-care. More guided meditation, deep breathing exercises, eating much cleaner with tons of greens and colorful vegetables and fruits and beans, increasing aerobic exercise or getting outdoors and more walking, cutting caffeine and white bread and processed foods and sugars AND aspartame, boosting water and herbal teas, taking relaxing baths, less tv, better sleep hygiene, etc. all make a difference.
Actually, even if it's not panic, doing all of those things couldn't hurt I guess.
posted by kinetic at 2:35 AM on December 9, 2015
Actually, even if it's not panic, doing all of those things couldn't hurt I guess.
posted by kinetic at 2:35 AM on December 9, 2015
Temperature regulation issues could be related to a pituitary adenoma, which could cause hormone imbalances which may explain some symptoms. You didn't specify what area was CT scanned, so I don't know if it has already been ruled out. (IANAD)
posted by Apoch at 3:28 AM on December 9, 2015
posted by Apoch at 3:28 AM on December 9, 2015
I was going to suggest the thyroid given you already have some endocrine problems.
posted by ServSci at 4:08 AM on December 9, 2015
posted by ServSci at 4:08 AM on December 9, 2015
I had some sort of similar symptoms. Getting intensely light-headed, nauseated, and just sort of lightly panicky randomly. It was more likely to happen in hot or crowded areas, so I pretty much stopped going to concerts or busy parties. Ultimately the best diagnosis I got was dysregulation of the vagus nerve. My doctor gave me a prescription and symptoms improved quite dramatically. Feel free to MeMail me if you want to know more specifics.
posted by forkisbetter at 4:46 AM on December 9, 2015 [1 favorite]
posted by forkisbetter at 4:46 AM on December 9, 2015 [1 favorite]
Feeling hot and ill and tired are all consistent with hyperthyroid, as are high BP and heart palpitations, so consider this another vote for "Did they check your thyroid?" I can't imagine they haven't, really, since you see an endo already, but who knows; I know some endos specialize in Just Diabetes.
Beyond that, I'd ask for a referral to a rheumatologist. Triggers related to sleep and heat are not uncommon. Also, even if what you have is not rheumatological, the doctor may have some other ideas for who to try next.
posted by pie ninja at 5:15 AM on December 9, 2015
Beyond that, I'd ask for a referral to a rheumatologist. Triggers related to sleep and heat are not uncommon. Also, even if what you have is not rheumatological, the doctor may have some other ideas for who to try next.
posted by pie ninja at 5:15 AM on December 9, 2015
Nthing the thyroid test. I should also note that I was having low thyroid symptoms but my blood test came back in the "normal" range, though it was low normal. After trying other stuff, I finally convinced my doctor to put me on thyroid medication (a fairly low dose), and my health improved dramatically.
Also, when they did the bloodwork, did they check your Vitamin B12 levels?
posted by gudrun at 5:31 AM on December 9, 2015
Also, when they did the bloodwork, did they check your Vitamin B12 levels?
posted by gudrun at 5:31 AM on December 9, 2015
Not doubting you, but are your blood sugars actually in "good control?"
posted by kuanes at 6:29 AM on December 9, 2015
posted by kuanes at 6:29 AM on December 9, 2015
I'm wondering if the "lightheadedness" you are experiencing might be cataplexy (a primary symptom of narcolepsy). You mention that sleep deprivation exacerbates your condition. Do you feel sleep deprived on days where you got a full night's sleep?
posted by TheCavorter at 6:31 AM on December 9, 2015
posted by TheCavorter at 6:31 AM on December 9, 2015
My dad recently had similar problems that seemed related to his pituitary, blood pressure, and kidneys. His nephrologist finally figured out that one of his blood pressure meds was interfering with one of his endocrine meds and that led to his sodium levels being dangerously low. Any idea what your sodium levels are?
posted by ldthomps at 8:01 AM on December 9, 2015
posted by ldthomps at 8:01 AM on December 9, 2015
Wow, I could have written this post; every word of it.
I went through all of this over two years. Went to the Mayo Clinic and was diagnoses with POTS (in my case, my heart rate increases when it is supposed to, but my blood pressure does not) along with Central Sensitization (e.g. fibromyalgia/chronic pain/chronic fatigue). These are both syndromes, which means they have no idea what is wrong or causing it, but it's validation.
posted by TinWhistle at 8:04 AM on December 9, 2015 [2 favorites]
I went through all of this over two years. Went to the Mayo Clinic and was diagnoses with POTS (in my case, my heart rate increases when it is supposed to, but my blood pressure does not) along with Central Sensitization (e.g. fibromyalgia/chronic pain/chronic fatigue). These are both syndromes, which means they have no idea what is wrong or causing it, but it's validation.
posted by TinWhistle at 8:04 AM on December 9, 2015 [2 favorites]
What are you using to control cholesterol? A statin? If you're diabetic and taking a statin, weird things can happen. I don't see that you've had liver enzyme tests, but you may well have them routinely (nevertheless, it's advisable given your history if there are statins in the picture). Cognitive impairment is one of the weird side effects that's popped up over the years of marketing all statins, and this might fall into that category. You may want to ask your physician if this should be reported to FDA's adverse event system (or, alternately, you can start a report yourself here).
Likewise, I'd go through the product insert for each medication you're taking, specifically the sections on contraindications and adverse reactions, and see if anything rings true. Ask your doctor to do the same thing, with you during an appointment. Really basic things like hypersensitivities and drug interactions get missed more often than you might suspect. These inserts are easy to find online, just search for "Drug name insert" (here's the insert for simvastatin/Zocor, for instance).
FWIW, I worked on a number of epidemiological studies related to statins. Years later, that work has helped prompt FDA to relabel statins. Cholesterol management using pharmaceutical interventions is one of those things that's being actively pushed out of fashion by public health research. If you're ever interested in lifestyle interventions (diet mostly, but also exercise) that for the vast majority of the population can replace the use of cholesterol-reducing medications, I'd be happy to point you in that direction.
Be well.
posted by late afternoon dreaming hotel at 9:05 AM on December 9, 2015
Likewise, I'd go through the product insert for each medication you're taking, specifically the sections on contraindications and adverse reactions, and see if anything rings true. Ask your doctor to do the same thing, with you during an appointment. Really basic things like hypersensitivities and drug interactions get missed more often than you might suspect. These inserts are easy to find online, just search for "Drug name insert" (here's the insert for simvastatin/Zocor, for instance).
FWIW, I worked on a number of epidemiological studies related to statins. Years later, that work has helped prompt FDA to relabel statins. Cholesterol management using pharmaceutical interventions is one of those things that's being actively pushed out of fashion by public health research. If you're ever interested in lifestyle interventions (diet mostly, but also exercise) that for the vast majority of the population can replace the use of cholesterol-reducing medications, I'd be happy to point you in that direction.
Be well.
posted by late afternoon dreaming hotel at 9:05 AM on December 9, 2015
Get your ears checked by an ENT to make sure you don't have wax impaction. Prickly spins can be middle ear related. That would be the easiest thing. You can take something called Cholesterid, that physically helps with excess cholesterol by clearing it in the lower gut. Some blood pressure meds work by being diuretic. So get enough water. Audit your meds as suggested above. Figure out the worst aspect of your health, and figure out if the side effects of the med for it, are worse than the condition.
Often meds are prescribed to handle the side effects from other meds.
posted by Oyéah at 9:20 AM on December 9, 2015
Often meds are prescribed to handle the side effects from other meds.
posted by Oyéah at 9:20 AM on December 9, 2015
Have you had a tilt table test? This can detect abnormal blood pressure changes that can cause symptoms similar to what you describe.
posted by Corvid at 1:51 PM on December 9, 2015 [1 favorite]
posted by Corvid at 1:51 PM on December 9, 2015 [1 favorite]
things to check - thyroid and iodine and vitamin D and celiac (because of the "pang on the left" and the possible POTS)
posted by egk at 2:16 PM on December 9, 2015
posted by egk at 2:16 PM on December 9, 2015
Response by poster: Thank you for all the ideas.
quick answers to some questions
- we did to thyroid but maybe not the more comprehensive tests
- CAT scan was of head
- POTS - we did do the standing, lying down, sitting test and they said it was normal, but I'll check into it further
- I will check on my B12
- my blood sugars are under good control - I test and my docs check the a1c regularly
-I think my electrolytes were all fine the last check
-I am taking statins and will take a look at talking about side effects
-I have not had a tilt table test
-I will follow up with a new doctor about other possibilities regarding my extreme sensitivity to heat.
unfortunately all of this may be delayed as I think I need to find a new primary care doc. they seem unwilling to investigate further about medications and physical symptoms and are pushing for a psych consult as a result of me pushing to try other tests.
posted by puppetspuppetspuppets at 5:41 PM on December 9, 2015
quick answers to some questions
- we did to thyroid but maybe not the more comprehensive tests
- CAT scan was of head
- POTS - we did do the standing, lying down, sitting test and they said it was normal, but I'll check into it further
- I will check on my B12
- my blood sugars are under good control - I test and my docs check the a1c regularly
-I think my electrolytes were all fine the last check
-I am taking statins and will take a look at talking about side effects
-I have not had a tilt table test
-I will follow up with a new doctor about other possibilities regarding my extreme sensitivity to heat.
unfortunately all of this may be delayed as I think I need to find a new primary care doc. they seem unwilling to investigate further about medications and physical symptoms and are pushing for a psych consult as a result of me pushing to try other tests.
posted by puppetspuppetspuppets at 5:41 PM on December 9, 2015
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This is also going to sound woo-woo of me but acupuncture actually helped me a lot too, my acupuncturist told me the cues from my body (pulse etc) showed that something had completely toppled me over and she did some work that unblocked a certain point, which decreased the frequency of my lightheaded spells until I finally was able to talk to my dr (I wasn't able to get time with her for 3 weeks) and transition to another medication. If nothing else has worked, it can't hurt to try. I'd give you a recommendation but I go to the health center at work!
posted by raw sugar at 11:20 PM on December 8, 2015