Discussions By Condition: I cannot get a diagnosis.

is there anyone knowledgeable on endocrine glands + symptoms?

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: luke320
  • March 15, 2008
  • 02:25 AM

Hello, i'm a 21 year old male. i have no job and i don't go to college because of this condition i have. i first started having problems when i was 16 (heat intolerance + difficulty concentrating + muscle weakness and fatigue during intense exercise to name a few). i was a ******s and didn't go see a doctor until i was 19)). it has gotten quite severe now and it just means there are big limitations on what i can do with my life right now. i'm positive i do not have any mental illnesses - it's all physiological, however due to the nature of the condition and the way it affects my brain it effects my emotions and congnitive ability, and depending on bad i feel - the more severly it affects me.. this means doctors tend to think of anxiety and depression, but i know 100% for a fact that the depression and anxiety symptoms are directly related to how i feel physically.. and when my body is not impaired i always feel very postive, energetic, full of life, etc.

i will say i have an autoimmune disease called coeliac's disease and i have a tachycardia condition called inappropriate sinus tachycardia but i'm on beta-blockers so it has my heart rate under control and coeliac's disease just requires a gluten-free diet. unlucky for me i also have a third condition - and this is what the thread is about. i'll describe the symptoms below.

it's hard to say what exactly triggers my symptoms to get worse.... one thing i know for sure... if i ever do exercise to the point where i start sweating...... the next day i always feel horrible... my symptoms are always at their worst... so i think temperature plays a role..... but in what way precisely is hard to say.... i don't think it's a case that my body simply gets too hot (like fever symptoms) becuz i also get problems with coldness... it's like my body reponds inappropriately to hot and cold...... and there is some lasting effect after that response that impairs my body in many ways. it has gotten gradually worse over time. i do not have headaches or pain. the very first condition i thought it was... was the hyperthyroidism, but a doctor's blood test seems to have ruled this out.

when i'm feeling physically good i have no problems at all. my brain functions normally and i have no fatigue or muscle weakness. however, these days i rarely feel physically good - i am always feeling a little bad - just feeling sluggish and noticable concentration impairment (depending on how bad i feel).

when i'm feeling bad physically:

sleep - i always sleep for many, many hours. i typically spend 10-11 hours in bed (5-6 hours when i'm feeling good - which is very rare these days). i always wake up feeling incredibly groggy. if you ever watch those people waking up from surgery where they've undergone lots of blood loss or whatever... that's all i can relate it to, but not as severe heh. i think temperature is a factor. when i'm too cold i wake up with aches in my upper back/neck area, and when i'm too hot i wake up sweaty and i feel bad either way (this is bizzare i know).

brain - difficulty maintaining concentration, mind wanders very easily, very narrow minded, i become very emotional - when i stand up and try walk around during these times I always feel weakness in my legs and just generally don't feel good. so fatigue and difficulty maintaining concentrating i experience go hand in hand.

muscle - impaired muscle strength and general overall body weakness or fatigue - climbing a stairs requires so much more energy and could get my pulse racing a bit. as a gauge i attempt push ups - i can do 15 push ups before muscle fatigue sets in when i'm feeling good . when i'm feeling really bad, one push up is sometimes impossible or immensely difficult - both the pushing and the lowering part. this indicates HUGE impairment of muscle function.

temperature - intolerance to cold + heat. fatigue and other symptoms worsens with heat. i sweat when i'm too cold - that is a fact. it is bizzare. i feel bad physically when i'm too cold or too hot......... one thing i noticed aswell.......... when i'm feeling bad, my upper body (chest, stomach, back, etc) are warm to touch with my hands... but when i touch my thighs, calves and kneecaps they feel cold especially my calves (my knees get red when too hot... and blue/pink/+ other colors when cold)... when i sit around for a long time my calves and feet get FREEZING... when i touch em it's like owww man that is cold......... what the heck does this mean? and i don't seem to have circulation problems i'm 21 years old... anyone know what coldness in the lower limbs indicates? this is interesting becuz i always feel like walking around is benefical to me... maybe becuz it keeps the blood flowing evenly around my body??

physical exertion - any kind of remotely intense exercise is out of the question due to muscle weakness + fatigue setting in preventing me from doing any kind of efficient workout. i think the main reason why i cannot do intense exercise is because the exercise generates heat, and i simply cannot tolerate heat... so therefore anything intense will cause my symptoms to worsen as i stated above.

touch sensitivity - as my body temperature increases, my sensitivity decreases (same thing if i'm very cold)... i seem to be be slightly numbed to touch..... it's very subtle.... but i notice it big time when i masturbate........... so as my body temperature rises i have to keep strippin of layers of clothing........... and then i gotta open a window to let in some cold air..... and aslong as it's not too cold....... then i can **m..... wonderful...... but just think how much of a challenege sex would be........... ***n... and the doctor is confused as to why i seem so down........ but infairness, explaining all these symptoms to a doctor is quite difficult (especially since my brain doesn't function so good sometimes)

i have an appointment to see an endocrinologist but i know there's a chance his blood test will not detect any abnormalities. so i think booking appointments with other specialists is not a bad idea. the only question is which ones. i've already seen a cardiologist and a lung specalist.

it's not cfs since mild exercise seems to make me feel a little better. my symptoms haven't been as bad since i got my physical fitness up a bit (although that's tough to do when you cannot do intense exercise). it's also not anemia. and my doctor did several blood tests. thryoid tests would have been done. i wish i just had hyperthyroidism and that was it... but it seems to have been ruled out by the doctor's blood test.

i wanted to keep things as straight forward and short as possible, but if someone wants me to expand on things i will happily do so. any help or pointers to sources of information that might help would be appreciated.

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7 Replies:

  • No clue what you have going on, but I'd think about seeing a geneticist given the things you already have a diagnosis for.
    aquila 1263 Replies Flag this Response
  • It's amazing that someone can have almost the same symptoms as me. I do the same thing, all they've ever found was really screwed up thyroid. Thing is my levels fluctuate so bad no one knows what to do with me. I've seen many endocrinologists but that would be a good start, you may want to be checked for thyroid, there's an adrenaline test to, all kinds of stuff they can test, but that sounds like a good place to start. Genetics testing wouldn't be a bad idea either thinking about it myself. Good Luck, hope this helped.
    foxylovesred 12 Replies Flag this Response
  • In regards to Cell Phone Dangers... http://www.snopes.com/horrors/techno/cellcharge.asp Yep... sure are dangerous thingys alrighty... Sorry, just had to reply to Blazes Lymey posting today.... Now I'll answer a reply to your post.tdwi;)
    TaylorDeelwithit 382 Replies Flag this Response
  • I believe you should be screened for porphyria as you have some psych symptoms (anxiety, depression), an auto immune disease (coelics which can go with porphyria). You need to be certain to keep the appointment with the endocrinologist as you have many symptoms which could be related to the endocrine system (like thyroid, parathyroid, adrenal). This started for you at an age many genetic diseases (like some of the types of porphyria) start--- so you perhaps should see a dr specializing in metabolic genetic diseases like Wilson's Disease (get screened for this also) and porphyria. BTW do you get B-12 supplementation? Does you family have people affected by psychological problems like depression (including suicide); schizophrenia, bi-polar, ADD/ADHD, etc. Anyone affected with psychosis, dementia sorts of diseases? You really do need to get seen by a genetic dr. If you have porphyria, you can do some things that will help you lessen its impact on your life. Avoiding the triggers that cause the problems is a biggie. Things that often trigger porphyria (each individual is different) are dieting/fasting/low carb diets (avoid diets like ATKINS; your body need carbs and the brain needs glucose) ; certain drugs/medications, alcohol (AVOID ALCOHOL) , certain foods , hormones (particularly for women); stress, infections. For porphyria folks, with regards to medicines and drugs; less is more so you want to avoid being over-doctored and only using absolutley necessary meds that are the least porphygenic when you need a medicine like an anti-biotic. But sometimes one must use a more risky medicine and then you do so with extreme caution. Not all porphyria folks react the same to each medicine either. There are databases of drugs which are probably less porphyrgenic in that they don't activate the enzyme P-450 pathway (since you already have coelics, it wouldn't be a bad idea to take care of your lover byu choosing these drugs over the more porphyrgenic drugs) Though you may have porphyria; you could have one or more other diseases along with it. A porphyria can be acquired (like when a person gets Hep C) or it can be genetic (you were born with a gene that makes you lack an enzyme needed to make heme). This is not an easy disease... but some folks are able to; by avoiding their triggers, live a life with less painful attack periods. Some may only have one attack and never have another. Here is some links to help you learn more about this disease.... like coelics it is horrid disease. But it can be managed and one can live a long life. Testing for it may need to be repeated as many things can go wrong when doing a 24 hr urine sample for elevated porphyrian levels. I am sorry you have been so ill so young; others also have been through this. Do check out yahoo groups for support groups on celiacs disease. tdwi Links: Porphyria - WrongDiagnosis.com Porphyria information including symptoms, diagnosis, misdiagnosis, treatment, causes, patient stories, videos, forums, prevention, and prognosis.www.wrongdiagnosis.com/p/porphyria/intro.htm http://www.porphyriafoundation.com/about_por/index.htmlAbout Porphyria Porphyria is not a single disease but a group of at least eight disorders that differ considerably from each other. A Look at Porphyria Article discusses the different types of porphyria, their symptoms, diagnosis, and treatments.rarediseases.about.com/cs/porphyria/a/072000.htm MedlinePlus: Porphyria Porphyrias are a group of genetic disorders caused by problems with how your body makes a substance called heme. Heme is found throughout the body, ...www.nlm.nih.gov/medlineplus/porphyria.html Porphyria - Genetics Home Reference Porphyria is a group of disorders caused by abnormalities in the chemical steps that lead to heme production. Heme is a vital molecule for all of the body's ...ghr.nlm.nih.gov/condition=porphyria
    TaylorDeelwithit 382 Replies Flag this Response
  • Hi,You need to get copies of your test results and then compare them with the following website:http://drrind.com/thyroidscale.aspThere are several links on the page for reading about what truly constitutes hyperthyroidism and hypothyroidism.Also when your thyroid is failing, you can vacillate between being hyper and hypo or have both symptoms simultaneously. So you may go to an endocrinologist one day, be tested and test normal on your thyroid tests. The next time you're high. And the next time you're low. Or your symptoms can cancel each other out and your test results are "normal" but you feel like crap. There are more scenarios than this. Much of your symptoms sound like both hypo and hyper thyroid disease together.You can read a lot about thyroid disease at the following website:http://www.thyroidmanager.org/You could also have nutritional deficiencies contributing to your symptoms. And you could have other autoimmune disorders too.
    Anonymous 42789 Replies Flag this Response
  • I don't know if you still check this forum, and I realize this reply is several years later from your original posting date, but in case you still haven't been able to figure out what is wrong, I think I know what health condition you may have. Check out Chronic Fatigue Syndrome (CFS). All of the symptoms you have described match CFS: excessive tiredness after physical activitiy, aches and pains, psychological repercussions (depression etc.), problems with concentration, body temperature regulation issues, etc.http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002224/http://www.justanswer.com/endocrinology/5rrpu-anything-cause-feel-hot-time.htmlhttp://www.webmd.com/chronic-fatigue-syndrome/default.htmhttp://www.webmd.com/chronic-fatigue-syndrome/news/20120229/web-therapy-helps-teens-with-chronic-fatigue-syndromePlease be aware that some people have combinations of health conditions so it may be hard to pinpoint which ones. Although, in your case, it sounds like you clearly have CFS and only CFS.TreatmentCurrently, there is no cure for CFS, only a combination of treatments that can help manage some of the symptoms. Cognitive Behavioral Therapy and diet monitoring are probably the two main forms of treatment. With those, you can learn how to break tasks down into smaller tasks, recognize patterns in your energy levels throughout the day, recognize which types of foods lower or seem to increase your energy, come to terms with dealing with this biological disorder that has psychological impact, and learn ways to focus on what you CAN do. Recently, internet-based therapy has garnered attention as being quite effective.Hope this helps and take care!
    Anonymous 42789 Replies Flag this Response
  • I don't know if you still check this forum, and I realize this reply is several years later from your original posting date, but in case you still haven't been able to figure out what is wrong, I think I know what health condition you may have. Check out Chronic Fatigue Syndrome (CFS). All of the symptoms you have described match CFS: excessive tiredness after physical activitiy, aches and pains, psychological repercussions (depression etc.), problems with concentration, body temperature regulation issues, etc.http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002224http://www.justanswer.com/endocrinology/5rrpu-anything-cause-feel-hot-time.htmlhttp://www.webmd.com/chronic-fatigue-syndrome/default.htmhttp://www.webmd.com/chronic-fatigue-syndrome/news/20120229/web-therapy-helps-teens-with-chronic-fatigue-syndromePlease be aware that some people have combinations of health conditions so it may be hard to pinpoint which ones. Although, in your case, it sounds like you clearly have CFS and only CFS.TreatmentCurrently, there is no cure for CFS, only a combination of treatments that can help manage some of the symptoms. Cognitive Behavioral Therapy and diet monitoring are probably the two main forms of treatment. With those, you can learn how to break tasks down into smaller tasks, recognize patterns in your energy levels throughout the day, recognize which types of foods lower or seem to increase your energy, come to terms with dealing with this biological disorder that has psychological impact, and learn ways to focus on what you CAN do. Recently, internet-based therapy has garnered attention as being quite effective.Hope this helps and take care!Hello, i'm a 21 year old male. i have no job and i don't go to college because of this condition i have. i first started having problems when i was 16 (heat intolerance + difficulty concentrating + muscle weakness and fatigue during intense exercise to name a few). i was a ******* and didn't go see a doctor until i was 19)). it has gotten quite severe now and it just means there are big limitations on what i can do with my life right now. i'm positive i do not have any mental illnesses - it's all physiological, however due to the nature of the condition and the way it affects my brain it effects my emotions and congnitive ability, and depending on bad i feel - the more severly it affects me.. this means doctors tend to think of anxiety and depression, but i know 100% for a fact that the depression and anxiety symptoms are directly related to how i feel physically.. and when my body is not impaired i always feel very postive, energetic, full of life, etc.i will say i have an autoimmune disease called coeliac's disease and i have a tachycardia condition called inappropriate sinus tachycardia but i'm on beta-blockers so it has my heart rate under control and coeliac's disease just requires a gluten-free diet. unlucky for me i also have a third condition - and this is what the thread is about. i'll describe the symptoms below.it's hard to say what exactly triggers my symptoms to get worse.... one thing i know for sure... if i ever do exercise to the point where i start sweating...... the next day i always feel horrible... my symptoms are always at their worst... so i think temperature plays a role..... but in what way precisely is hard to say.... i don't think it's a case that my body simply gets too hot (like fever symptoms) becuz i also get problems with coldness... it's like my body reponds inappropriately to hot and cold...... and there is some lasting effect after that response that impairs my body in many ways. it has gotten gradually worse over time. i do not have headaches or pain. the very first condition i thought it was... was the hyperthyroidism, but a doctor's blood test seems to have ruled this out.when i'm feeling physically good i have no problems at all. my brain functions normally and i have no fatigue or muscle weakness. however, these days i rarely feel physically good - i am always feeling a little bad - just feeling sluggish and noticable concentration impairment (depending on how bad i feel). when i'm feeling bad physically:sleep - i always sleep for many, many hours. i typically spend 10-11 hours in bed (5-6 hours when i'm feeling good - which is very rare these days). i always wake up feeling incredibly groggy. if you ever watch those people waking up from surgery where they've undergone lots of blood loss or whatever... that's all i can relate it to, but not as severe heh. i think temperature is a factor. when i'm too cold i wake up with aches in my upper back/neck area, and when i'm too hot i wake up sweaty and i feel bad either way (this is bizzare i know).brain - difficulty maintaining concentration, mind wanders very easily, very narrow minded, i become very emotional - when i stand up and try walk around during these times I always feel weakness in my legs and just generally don't feel good. so fatigue and difficulty maintaining concentrating i experience go hand in hand.muscle - impaired muscle strength and general overall body weakness or fatigue - climbing a stairs requires so much more energy and could get my pulse racing a bit. as a gauge i attempt push ups - i can do 15 push ups before muscle fatigue sets in when i'm feeling good . when i'm feeling really bad, one push up is sometimes impossible or immensely difficult - both the pushing and the lowering part. this indicates HUGE impairment of muscle function.temperature - intolerance to cold + heat. fatigue and other symptoms worsens with heat. i sweat when i'm too cold - that is a fact. it is bizzare. i feel bad physically when i'm too cold or too hot......... one thing i noticed aswell.......... when i'm feeling bad, my upper body (chest, stomach, back, etc) are warm to touch with my hands... but when i touch my thighs, calves and kneecaps they feel cold especially my calves (my knees get red when too hot... and blue/pink/+ other colors when cold)... when i sit around for a long time my calves and feet get FREEZING... when i touch em it's like owww man that is cold......... what the heck does this mean? and i don't seem to have circulation problems i'm 21 years old... anyone know what coldness in the lower limbs indicates? this is interesting becuz i always feel like walking around is benefical to me... maybe becuz it keeps the blood flowing evenly around my body??physical exertion - any kind of remotely intense exercise is out of the question due to muscle weakness + fatigue setting in preventing me from doing any kind of efficient workout. i think the main reason why i cannot do intense exercise is because the exercise generates heat, and i simply cannot tolerate heat... so therefore anything intense will cause my symptoms to worsen as i stated above.touch sensitivity - as my body temperature increases, my sensitivity decreases (same thing if i'm very cold)... i seem to be be slightly numbed to touch..... it's very subtle.... but i notice it big time when i masturbate........... so as my body temperature rises i have to keep strippin of layers of clothing........... and then i gotta open a window to let in some cold air..... and aslong as it's not too cold....... then i can ***..... wonderful...... but just think how much of a challenege sex would be........... ****... and the doctor is confused as to why i seem so down........ but infairness, explaining all these symptoms to a doctor is quite difficult (especially since my brain doesn't function so good sometimes)i have an appointment to see an endocrinologist but i know there's a chance his blood test will not detect any abnormalities. so i think booking appointments with other specialists is not a bad idea. the only question is which ones. i've already seen a cardiologist and a lung specalist.it's not cfs since mild exercise seems to make me feel a little better. my symptoms haven't been as bad since i got my physical fitness up a bit (although that's tough to do when you cannot do intense exercise). it's also not anemia. and my doctor did several blood tests. thryoid tests would have been done. i wish i just had hyperthyroidism and that was it... but it seems to have been ruled out by the doctor's blood test. i wanted to keep things as straight forward and short as possible, but if someone wants me to expand on things i will happily do so. any help or pointers to sources of information that might help would be appreciated.
    Anonymous 42789 Replies Flag this Response
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