Discussions By Condition: I cannot get a diagnosis.

is there anyone knowledgeable on endocrine glands + symptoms?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: luke320
  • March 15, 2008
  • 06:25 PM

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 the condition.... 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.

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)... and without goin into too much detail, i wouldn't be able to have sex since my temperature would rise and sensitivity decreases down below and suddenly i'm limp... and i gotta cool down to make things work right. you can see now why i'm pretty eager to book some other appointments and find out the problem asap.

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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3 Replies:

  • Before you let them tell you that your thyroid gland is totally healthy based on hormone levels, you might ask to have thyroid antibodies tested, even if your TSH and other hormones look great. A thyroid ultrasound might not be a bad idea, either.I have something called Hashimoto's Encephalopathy. It's a rare complication of autoimmune thyroiditis (hashimoto's and grave's patients can get it). It can cause a profound fatigue and the brain fog you describe. I had bad headaches, fatigue, and problems with my balance, too- but every case looks different. Most HE patients have normal thyroid hormone levels and it is only detected when antibodies are checked.I went undiagnosed for 8 years. I had a lot of symptoms that looked like hypothyroid symptoms (cold intolerance, low temperature, elevated cholesterol and triglycerides, dry skin, constipation, compression neuropathies, poor appetite, hair loss, etc), yet my TSH was always okay. I was reassured numerous times that my thyroid gland was healthy. I was told to take antidepressants and go to therapy. Of course, this did not work. The fatigue felt like I had been swept out to sea by a huge tidal wave and had been treading water for 40 days- that's how I felt when I woke up each morning.My thyroiditis was picked up by a neurology subspecialist. Subsequent ultrasound showed that my gland was full of tiny nodules from the autoimmune destruction. The whole time I was sick, I kept thinking that something might be wrong with my thyroid gland, but as luck would have it, it did not show up when hormones were checked. And I was treated like a nut case by my doctors for thinking I was ill when all my tests were normal.This was very painful, and this is why I post here. I have no idea if your thyroid gland is the source of your problems, but what i do know is that you can have normal hormone levels and a very sick gland. And what i especially have learned is that if you think you are ill, you probably are- even if all the labs so far are normal. If you don't think it's depression or anxiety, it probably isn't. Yes, many ill people get depressed and anxious after a while; and many people do suffer from depression and/or anxiety just by itself... but when you suspect it's not just that, you owe it to yourself to pursue a proper diagnosis.Hashimoto's and Graves are on a continuum. Typically, Hashimoto's antibodies include those to thyroglobulin and thyroperoxidase. Grave's antibodies are those that either stimulate or inhibit TSH. There's some overlap between the two diseases, however. Having celiac disease increases your risk of having thyroiditis. Celiac can also cause fatigue by itself.Also, the beta blocker propranolol can interfere with thyroid hormone levels.Not sure if any of this applies to you, but I thought I'd throw it out there just in case.Good Luck in your search for answers.
    Anonymous 42789 Replies Flag this Response
  • Elke and I tend to agree on thryoid issues! You do seem to have many of the classic symtpoms of thryoid problems and I would say it is worth pursing further. Seeing that you have other autoimmune diseases, it is probably not uncommon to develop others...lucky us! I am in the same boat.....! I hope the best for you! Joan
    Joan5555 316 Replies Flag this Response
  • if nothing else ends up being found.. maybe you should then consider cfs again and go and see a cfs specialist for a better opinion (there are tests which can be done to HELP to vertify CFS.. but only a CFS specialist would be up to date with the info). You are correct in thinking that in cfs, that mild exercise usually make one worst (it usually does).. but in milder cfs cases... in about 10% of cfs cases.. mild exercise seems to help (as long as one dont go crossing wherever ones exercise limit is). This is why "graded exercise programs" are still recommended in CFS. If you do have cfs.. your symptoms would make sense.
    taniaaust1 2267 Replies Flag this Response
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