Discussions By Condition: I cannot get a diagnosis.

What is wrong with me?

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: silverscreenx
  • March 17, 2009
  • 08:45 PM

I don't know what is wrong with me and the doctors don't seem to know anything either. I have a bunch of random symptoms and I just don't feel like myself anymore.

-I'm a 19 yr old female and I am excessively tired all the time. I feel like I'm 85 instead of 19. I always feel so worn out and like I'm in a fog or really lazy. It's not that I don't want to do things, it's just that I can't. I have very little energy. I wake up and an hour later I'm ready to go back to sleep or take a nap. My parents think I'm just lazy. My doctors have tested me for anemia, vitamin deficiencies, and thyroid problems but everything came back fine. I also don't think my doctors are taking me seriously because they seem to think it's a "lifestyle" issue but I know it's not. I'm not depressed, I exercise regularly, I'm not any more stressed out than normal, and my sleeping habits aren't any different than they've ever been. I am so tired of not having the energy to go out and have fun and actually live life!

-I don't think this has anything to do with my fatigue but maybe it has something to do with the overall problem. I get excessively thirsty during the night. I keep bottles of water near my bed and I've gone through as much two and half bottles a night. I don't consume caffeine or excessive sodium. My sodium levels are actually a little low. I eat normally, but I have noticed that in general I'm more thirsty than I am hungry so I drink a lot during the day too.

-I black out almost every time I stand up. My doctor didn't run any tests or anything but she said I'm probably standing up too quickly or something. I've tried standing up slower and not changing positions too quickly but it still happens. Sometimes I even fall down. My heart starts pounding, everything goes black and I get a headache. A few days ago this happened and afterwards I got a really bad headache, worse than even the migraines I get and it lasted for like 2 days.

What is going on with me?? Does anyone have any similar experiences?

Reply Flag this Discussion

19 Replies:

  • Because of the excessive thirst I have to ask if you have had a fasting blood test for diabetes?Any other tests?
    Beth56 272 Replies Flag this Response
  • Go to an endocrinologist and ask them to rule out IR (Insulin Resistance) by performing a blood test. They should look specifically at the overall insulin, glucose and lipid levels. You may be suffering from hyperinsulinemia with reactive hypoglycemia due to this condition. I’m pretty sure this will be your best bet here, judging from your symptoms which are eerily similar to my own (I’m an IR patient).If you are diagnosed with it, you will need to cut simple carbohydrates out of your diet, as well as refined sugars. You will also need to try and eat equal ratios of complex carbohydrates and proteins - that is, for every carbohydrate calorie consumed, you will need to match it with the same amount of protein calories. This will prevent the excess insulin from attacking the carbohydrates within the blood, because the protein binds with the carbohydrates and will then not be attacked by the insulin (this process results in hypertensive episodes and anxiety, and in some cases even headaches or migraines). You will also need to try and avoid saturated and trans fats, opting for mono and poly unsaturated fats instead.I would also recommend that you opt for a natural approach to treatment over medications. Chromium, a naturally occurring substance is a crucial element in the proper functioning of insulin. Clinical trials indicate that individuals with IR treated with 1,000mcg daily showed remarkable improvements in that their insulin and glucose levels were comparatively lowered to that of healthy individual’s within only just a few months of beginning the therapeutic treatments. This mineral also lowers and effectively treats high cholesterol, which is another earmark and complication of this syndrome.Combine this treatment with 400mg of Alpha Lipoic Acid to better improve insulin’s overall function. This has been shown to effectively boost insulin’s effects over energy conversion and storage and will greatly improve your body’s sensitivity to insulin, allowing it to better access the cells, requiring your pancreas to produce less and less of it over time – which will contribute to the effective treatment of hyperinsulinemia and resulting control over hypoglycemic episodes.Both of these substances are 100% natural and there is very little, if any risk of complications arising from their use. Should the body be unable to process or use all of the introduced levels of either of these substances, the remainders are merely filtered out of the body harmlessly by the kidneys – an overdose is next to impossible, in other words. A physician’s oversight is not necessary to obtain or to use either of these supplements, and both can be found relatively cheaply at any health food or supplement store over the counter in pill form.Good luck, and I hope that your doctor will listen to your concerns and perform the appropriate tests without too much groveling. And just to cover all of your bases here, also have them check for Lyme disease at the same time. That can also present with metabolic abnormalities, fatigue, headaches, joint pains etc. though I don't think it can cause sugar issues like I suspect you are suffering from, and it's typically not related to excessive water intake just for that specific reason. But yeah, just to be safe request they check for that too. I really hope you find your answer soon.
    Anonymous 42789 Replies Flag this Response
  • Research Postural Orthostatic Tachycardia Syndrome. Lots of Dr's don't know about it. Request a Tilt Table Test.Good Luck
    pamelasmc 82 Replies Flag this Response
  • Beth56- I don't think I've had a fasting glucose test. I had to fast but that was for a Vitamin B12 test. In the past month I've had a CBC, a white blood cell differential, a chemistry panel, and a free t4. All of the results have been in the normal range, although some of them have been on the low end of normal. Figures. :rolleyes:Blaze- Wow, I've never even heard of that. I'll have to see if my doctors familiar with this. Thanks for the info!! :)Pamelasmc- I will definitely talk to my doctor about that. Thanks for the info!!:)
    silverscreenx 6 Replies Flag this Response
  • I agree that it sounds like POTS.
    richard wayne2b 1232 Replies Flag this Response
  • Go to an endocrinologist and ask them to rule out IR (Insulin Resistance) by performing a blood test. They should look specifically at the overall insulin, glucose and lipid levels. You may be suffering from hyperinsulinemia with reactive hypoglycemia due to this condition. I’m pretty sure this will be your best bet here, judging from your symptoms which are eerily similar to my own (I’m an IR patient).If you are diagnosed with it, you will need to cut simple carbohydrates out of your diet, as well as refined sugars. You will also need to try and eat equal ratios of complex carbohydrates and proteins - that is, for every carbohydrate calorie consumed, you will need to match it with the same amount of protein calories. This will prevent the excess insulin from attacking the carbohydrates within the blood, because the protein binds with the carbohydrates and will then not be attacked by the insulin (this process results in hypertensive episodes and anxiety, and in some cases even headaches or migraines). You will also need to try and avoid saturated and trans fats, opting for mono and poly unsaturated fats instead.I would also recommend that you opt for a natural approach to treatment over medications. Chromium, a naturally occurring substance is a crucial element in the proper functioning of insulin. Clinical trials indicate that individuals with IR treated with 1,000mcg daily showed remarkable improvements in that their insulin and glucose levels were comparatively lowered to that of healthy individual’s within only just a few months of beginning the therapeutic treatments. This mineral also lowers and effectively treats high cholesterol, which is another earmark and complication of this syndrome.Combine this treatment with 400mg of Alpha Lipoic Acid to better improve insulin’s overall function. This has been shown to effectively boost insulin’s effects over energy conversion and storage and will greatly improve your body’s sensitivity to insulin, allowing it to better access the cells, requiring your pancreas to produce less and less of it over time – which will contribute to the effective treatment of hyperinsulinemia and resulting control over hypoglycemic episodes.Both of these substances are 100% natural and there is very little, if any risk of complications arising from their use. Should the body be unable to process or use all of the introduced levels of either of these substances, the remainders are merely filtered out of the body harmlessly by the kidneys – an overdose is next to impossible, in other words. A physician’s oversight is not necessary to obtain or to use either of these supplements, and both can be found relatively cheaply at any health food or supplement store over the counter in pill form.Good luck, and I hope that your doctor will listen to your concerns and perform the appropriate tests without too much groveling. And just to cover all of your bases here, also have them check for Lyme disease at the same time. That can also present with metabolic abnormalities, fatigue, headaches, joint pains etc. though I don't think it can cause sugar issues like I suspect you are suffering from, and it's typically not related to excessive water intake just for that specific reason. But yeah, just to be safe request they check for that too. I really hope you find your answer soon.Wow thank you so much!!! That was a ton of information and I will definitely ask my doctor to perform these tests or I will just find another doctor. How hard was it for you to change your diet and adjust to it? Once again thanks so much!!!:)
    silverscreenx 6 Replies Flag this Response
  • Wow thank you so much!!! That was a ton of information and I will definitely ask my doctor to perform these tests or I will just find another doctor. How hard was it for you to change your diet and adjust to it? Once again thanks so much!!!:)You're very welcome! I didn't find it very hard once I discovered that staying away from simple carbohydrates and sugars reduced my symptoms. I actually went through a period of time where I didn't want to eat anything for a while, pre-diagnoses, because I knew that it just made me feel sicker - and all the water I was consuming made me not feel hungry either. I discovered after a few days of that that not eating also made me feel progressively worse though, as I was getting even more hypoglycemic (though I didn't know that's what was making me feel bad until later), so I ended up experimenting with healthier foods and such - things mostly high in fiber, proteins and complex carbohydrates. I eventually also found out about those supplements and since then have been feeling almost completely healthy again (I can now eat a bit of stuff on the naughty side without feeling like total crap afterward). I really hope that you don't turn out to have IR, because it really is an entirely life-altering thing and really sucks at times. As a for instance, I have to constantly think of the pros and cons of foods and activities at all times - excessive exercise can worsen the symptoms rather than make them better, and drinking is a definite no-no too. Not fun... However, if you do happen to have and are diagnosed with IR I would request, if they don't suggest it first, that the hyperinsulinemia isn't being caused from an insulinoma via a CT scan of the pancreas, or other relevant diagnostic test. I didn't know that that could also be the problem until after my health insurance expired, so I didn't get checked out for that - and I should have because it is routine exclusion criteria for IR or those presenting with chronic hyperinsulinemia.P.S. I think you should definitely have your doctor also rule out heart issues as has already been suggested, because that also present with symptoms similar to what you are describing. IR might be a kinder diagnoses rather than the numerous cases that heart issues could be, considering.
    Anonymous 42789 Replies Flag this Response
  • with the fatigue and thirst.. my immediate thought was for you to get tested for diabetes.. but on reading the rest of your symptoms after that.... "I black out almost every time I stand up. My doctor didn't run any tests or anything but she said I'm probably standing up too quickly or something. I've tried standing up slower and not changing positions too quickly but it still happens. Sometimes I even fall down. My heart starts pounding, everything goes black and I get a headache. A few days ago this happened and afterwards I got a really bad headache, worse than even the migraines I get and it lasted for like 2 days. " That's typical for POTS (postural orthostatic tachycardia syndrome). I myself have POTS. I believe your symptoms fairly clearly show you probably have POTS. Your migraines and other symptoms are ALL being caused by POTS. POTS patients can have low blood volume and hence we can find we need to drink a lot as it can be our bodies natural way of trying to cope with this illness. (I myself drink 5-7 Litres, 20-28 cups of fluid (sports drink hydration formulas) a day due to this illness.. note, you need sports drinks which balance the electrolytes..if one drinks that much water it could be harmful so dont try to boost your fluids by water (hence the sports drinks).Drinking sports drinks is one of the treatments for this often hard to treat illness. There are also meds one can have (but they dont help many of us with this).. or one can have daily IV 1 litre saline infusions. You need to go and get a tilt table test done or a doctor to do the heart rate monitoring to check you for POTS. check out the following "mystery diagnoses" epsoside on POTShttp://www.youtube.com/watch?v=NN3PB6N6oGY (episode one)http://www.youtube.com/watch?v=I40-r3RpFjs&feature=related (episode two)http://www.youtube.com/watch?v=PHydjGdg4XQ&feature=related (episode three) best luck.. ive found that 95% of GPs actually aint aware of this illness!
    taniaaust1 2267 Replies Flag this Response
  • have you been checked for epilepsi????and diabetis??????
    Anonymous 42789 Replies Flag this Response
  • have you been checked for epilepsi????and diabetis??????Nope...what kind of tests should I ask for?
    silverscreenx 6 Replies Flag this Response
  • You're very welcome! I didn't find it very hard once I discovered that staying away from simple carbohydrates and sugars reduced my symptoms. I actually went through a period of time where I didn't want to eat anything for a while, pre-diagnoses, because I knew that it just made me feel sicker - and all the water I was consuming made me not feel hungry either. I discovered after a few days of that that not eating also made me feel progressively worse though, as I was getting even more hypoglycemic (though I didn't know that's what was making me feel bad until later), so I ended up experimenting with healthier foods and such - things mostly high in fiber, proteins and complex carbohydrates. I eventually also found out about those supplements and since then have been feeling almost completely healthy again (I can now eat a bit of stuff on the naughty side without feeling like total crap afterward). I really hope that you don't turn out to have IR, because it really is an entirely life-altering thing and really sucks at times. As a for instance, I have to constantly think of the pros and cons of foods and activities at all times - excessive exercise can worsen the symptoms rather than make them better, and drinking is a definite no-no too. Not fun... However, if you do happen to have and are diagnosed with IR I would request, if they don't suggest it first, that the hyperinsulinemia isn't being caused from an insulinoma via a CT scan of the pancreas, or other relevant diagnostic test. I didn't know that that could also be the problem until after my health insurance expired, so I didn't get checked out for that - and I should have because it is routine exclusion criteria for IR or those presenting with chronic hyperinsulinemia.P.S. I think you should definitely have your doctor also rule out heart issues as has already been suggested, because that also present with symptoms similar to what you are describing. IR might be a kinder diagnoses rather than the numerous cases that heart issues could be, considering.I've seen a cardiologist and the only thing they noticed was that I have mitrovalve prolapse. My aunt's a doctor and I'm going to see her in a couple of weeks so I'm going to see if she can run some tests. Thanks again.
    silverscreenx 6 Replies Flag this Response
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  • with the fatigue and thirst.. my immediate thought was for you to get tested for diabetes.. but on reading the rest of your symptoms after that.... "I black out almost every time I stand up. My doctor didn't run any tests or anything but she said I'm probably standing up too quickly or something. I've tried standing up slower and not changing positions too quickly but it still happens. Sometimes I even fall down. My heart starts pounding, everything goes black and I get a headache. A few days ago this happened and afterwards I got a really bad headache, worse than even the migraines I get and it lasted for like 2 days. " That's typical for POTS (postural orthostatic tachycardia syndrome). I myself have POTS. I believe your symptoms fairly clearly show you probably have POTS. Your migraines and other symptoms are ALL being caused by POTS. POTS patients can have low blood volume and hence we can find we need to drink a lot as it can be our bodies natural way of trying to cope with this illness. (I myself drink 5-7 Litres, 20-28 cups of fluid (sports drink hydration formulas) a day due to this illness.. note, you need sports drinks which balance the electrolytes..if one drinks that much water it could be harmful so dont try to boost your fluids by water (hence the sports drinks).Drinking sports drinks is one of the treatments for this often hard to treat illness. There are also meds one can have (but they dont help many of us with this).. or one can have daily IV 1 litre saline infusions. You need to go and get a tilt table test done or a doctor to do the heart rate monitoring to check you for POTS. check out the following "mystery diagnoses" epsoside on POTShttp://www.youtube.com/watch?v=NN3PB6N6oGY (episode one)http://www.youtube.com/watch?v=I40-r3RpFjs&feature=related (episode two)http://www.youtube.com/watch?v=PHydjGdg4XQ&feature=related (episode three) best luck.. ive found that 95% of GPs actually aint aware of this illness!Yeah this is more and more what it's looking like. So if most GPs aren't aware of this illness how did you get diagnosed/treated? Did you just keep going to different doctors until someone knew what they were talking about? How soon after diagnosis did you start feeling better? I guess I should first ask if you are feeling better? So if this turns out to be what I have will drinking more gatorade help me feel better? I'm sorry I'm asking so many questions, I just want to get to the bottom of this. Thank you so much!!!
    silverscreenx 6 Replies Flag this Response
  • i can not give you an answer to what u ask , but i can tell you what to do .Do MRI of the brain , and check your neurologist to make an EEG of the brain to check your sleeping center and if this is the problem , youhave to be treated by light therapy . By the way , have you been in africa ?
    clinic 10 Replies Flag this Response
  • Evening,I believe you are chasing down the wrong path with POTS, the syncope is probably due to low blood pressure secondary to hypovolemia caused by hypoaldosteronism (which would also explain your excessive thirst and other symptoms). Speak to your doctor and ask about testing for primary adrenal insufficiency, type 4 reanl tubular acidosis etc.Best of luck.
    Anonymous 42789 Replies Flag this Response
  • Yeah this is more and more what it's looking like. So if most GPs aren't aware of this illness how did you get diagnosed/treated? Did you just keep going to different doctors until someone knew what they were talking about? How soon after diagnosis did you start feeling better? I guess I should first ask if you are feeling better? So if this turns out to be what I have will drinking more gatorade help me feel better? I'm sorry I'm asking so many questions, I just want to get to the bottom of this. Thank you so much!!! In my own case it took 10 yrs for the POTS to be diagnosed and that only happened cause an famous/well known Australian, Greg from the famous "Wiggles" (Im in Australia), had to quit his career, due to getting POTS. Hence my doctor found out POTS due to the publically this created and became more interested in my own POTS symptoms. I'd seen over 20 doctors, been to the heart clinic etc etc with the POTS being undiagnosed still. (all they'd picked up is that I had sympathetic/autonomic nervous system dysfunction going on but they didnt know what). yeah.. it's a sad situation to have something which most doctors arent familiar with so hence remain undiagnosed :(............ I had basically immediate improvement eg was able to be "longer" on my feet without symptoms, once my doctor started me drinking sports drinks all the time eg hence I doubled and tripled the amounts I previously was drinking. (be aware that with some brands of the sports drinks ive had bad reactions too as many sports drinks are high in additives... im sensitive to additives etc. so if one kind dont seem to help some, i suggest to try several brands). With this I now get less dizziness, less headaches, less sudden confusion and less tired and are at less risk of going unconsicous. Avoidance of certain things thou still for me plays a huge part in symptom avoidance eg heat can make one worst, I still need to lay down frequently etc (thou not so much seeing im on the sports drinks) I have tried a drug to help my POTS (in my case it was cortisol as I also have a cortisol deficiency) but that didnt work for me. Im going to trial the IV saline solution at some point for special occassions, in which I really want to be able to be on my feet eg for a party or whatever and not come down unwell for once. (The only reason i havent tried this so far is that it takes quite a time (1-2hrs?) to administer by the drip into ones vein. I really hope you can find someone to do tilt table testing on you who is aware of POTS to rule that in or out for you. http://home.att.net/~potsweb/POTS.html if you press the link on that page "professional medical help" .. it has various specialists mentioned in various countries who are specialise in this kind of thing.
    taniaaust1 2267 Replies Flag this Response
  • Evening, I believe you are chasing down the wrong path with POTS, the syncope is probably due to low blood pressure secondary to hypovolemia caused by hypoaldosteronism (which would also explain your excessive thirst and other symptoms). Speak to your doctor and ask about testing for primary adrenal insufficiency, type 4 reanl tubular acidosis etc. Best of luck. it is possible the original poster dont have POTS and this doctor is correct but POTS does explain excessive thirst and other symptoms as well, many of us POTS patients do have this symptom. (be aware that it is common for POTS patients to have low BP as well, thou not all do) Frequent urination is a common symptom of POTS, NMH, and severe cases of CFS. This problem is sometimes misdiagnosed as diabetes insipidus, which is a disease caused by reduced production of a pituitary hormone called vasopressin. Some POTS patients develop a diabetes insipidus like syndrome which is believed to be caused by somewhat reduced vasopressin output, low blood volume, and disruption of the alpha adrenergic system, which helps the kidneys retain water and sodium. the above is from http://home.att.net/~potsweb/POTS.html............ I took think you should get checked for adrenal insufficiancy. I know that tiredness and low sodium level can be a sign of having low cortisol levels. (i thou arent aware if low cortisol can cause thirst?? so dont know if that would cover all your symptoms)
    taniaaust1 2267 Replies Flag this Response
  • Cortisol is a glucocorticoid and not a mineralcorticoid -- it therefore has no effect on sodium and subsequently water homeostasis and thirst sensation. Aldosterone acting thru the renin-angiotension-aldosterol system affects transcription and protein expression for sodium-potatssium ion channels in the renal tubules. without sufficient aldosteron there is renal salt wasting, hypovolemia, polydypsia etc. One would therefore be drinking copious fluids, and via neurocardiogenic mechanisms have pre-syncope and syncope...
    Tuna Salad 8 Replies Flag this Response
  • Cortisol is a glucocorticoid and not a mineralcorticoid -- it therefore has no effect on sodium and subsequently water homeostasis and thirst sensation. Aldosterone acting thru the renin-angiotension-aldosterol system affects transcription and protein expression for sodium-potatssium ion channels in the renal tubules. without sufficient aldosteron there is renal salt wasting, hypovolemia, polydypsia etc. One would therefore be drinking copious fluids, and via neurocardiogenic mechanisms have pre-syncope and syncope...What kind of test do I need to ask for to get all of this checked out?
    silverscreenx 6 Replies Flag this Response
  • Sounds like you may have Chronic Fatigue Syndrome, and/or Sjogren's Syndrome. I had the same symptoms and it took 4 years to get disgnosed. 6 months after that I was diagnosed with Sjogren's Syndrome, which the primary diagnosis, and CFS is secondary. Have them check you for EBV. Seems most people with CFS have chronic Epstein Barr, or mono. If you've had mono anytime in your life, it can come back chronic, which is one of the suspected causes of CFS. I never even knew of a time I had mono prior to the CFS diagnosis. Go to www.cdc.gov/cfs and read everything they have on it.I am a RN, and I recommend anyone having problems getting diagnosed to go to a holistic DO. I went to a variety of 13 MD's who specialize in one thing or another & could not diagnose me. It wasn't until I went to a holistic DO that I started getting diagnosed. They run many different tests that MD's don't. Hope this helps
    AngilT 13 Replies Flag this Response
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