Discussions By Condition: I cannot get a diagnosis.

Excessive daytime sleepiness

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: sleepyhead
  • May 4, 2008
  • 04:42 AM

I have excessive daytime sleepiness. I have had this for at least 5 years. I have really been trying to get this resolved for the past 6 months. I can fall asleep at inappropriate times (like at work, on the telephone - my work involves talking on the phone all day, and while driving). I have seen a neurologist and had a sleep study performed. I do not have narcolepsy or sleep apnea. I did have sleep apnea but it has resolved after an extreme weight loss. I do have an increase of episodes when I sleep on my back but I don't do that much. I am also having additional problems too. I have had low ferritin (it hasn't gotten over a 23) for the past 3 years. During that time, I have actually been anemic twice. I took 27mg of iron a day for apx. 1 year with no significant changes. I can't take excess amounts of iron as it upsets my stomach and gallstones. I have seen a hematologist but my hemoglobin is fine. The hematologist refuses to give IV iron unless I am anemic. I have had an endoscopy and colonoscopy to check for bleeding - none found. I have had an increase of tiredness, depression, thinning hair, fatigue, brain fog, lack of concentration, and loss of interest in things. I am at my wits end. I am not a complainer but I know when something isn't right with my system. This is affecting my work performance immensely. My doctors don't seem to think there is anything wrong with me. My neurologist thinks it is my antidepressants, my psychiatrist thinks it is physical and has ruled out my antidepressants, I ended up with a new Internist who is still perplexed. I am desperate to find out what is going on. I really think this is due to the low ferritin but I can't convince my doctors of that. Any ideas or suggestions would be greatly appreciated.


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9 Replies:

  • Well you may know this but excessive daytime sleepiness can be a sleep condition....sometimes even sleep apenea will present without someone being overweight or even snoring! One suggestion is to go to a sleep clinic and get a good study done. Another thing that comes to mind is the thyroid. It can account for those symptoms and sometimes difficult to diagnose unless you have a good and sharp doctor. There is two autoimmune disease of the thryoid: Graves Disease and Hashimotos. I had Graves and I got all the symtpoms you mentioned. But the thryoid is tricky and many with Hashimotos also have very similar symptoms...hair and fatigue and brain fog...For this you need to test for TSH, FT3, FT4 and the antibodies for the disease I mentioned. With treatment, you can be feeling much better. Watch out, though for the doctor who says you are normal blood work...many doctors do not know the new recommend ranges for TSH...it is 0.3-2.5 and anything above or below that range probably needs treatment. Check out Mary Shomon's site on thryoid..she herself has Hashimotos and is a patient advocate. There is a great forum as well...I often used them when I was in the middle of it all. Joan
    Joan5555 316 Replies Flag this Response
  • Thanks Joan for your suggestions. I had a sleep study a couple of months ago. On the average, I do not have sleep apnea anymore. However, the time I slept on my back, I experienced sleep apnea episodes. Fortunately, I don't sleep on my back much. I have had a ton of blood work and I will verify the thyroid levels. I know that was checked at one time. I have had 2 sets of blood work done by a hemotologist but I don't have a copy of those results. I will get a copy. I know I haven't had antibodies checked for Graves or Hashimotos. I do have an appointment with my internist this week and will discuss these issues with her.Your suggestions were much appreciated,Pam
    sleepyhead 3 Replies Flag this Response
  • Seeing one of your doctors thinks it's the anti_depressants.. can that be tested by changing them or going off them for a while???? At least them that can be possibly ruled out. Doctors sometimes just dont like to admit.. even to themselves.. just how common side affects are.
    taniaaust1 2267 Replies Flag this Response
  • Thanks for the suggestion. Unfortunately, I tried changing antidepressants but I had a really bad experience with one of them. I tried backing off one of them and changing the time when I would take them but that didn't seem to make any difference (I kept a dairy). I had to go back up on the meds because I was getting mean. I work telephone customer support and can't afford to have an attitude. These problems have been going on for so long that it is increasing my depression (not to mention the fact that I can't get to the gym like I would like). I don't think I mentioned that I work 2 jobs (one full-time and one part-time) but that isn't unusual for me. Also, I got the results of my ferritin levels back today and it is down to 4.9 from a 7.1 a few months ago. I am going to pick up copies of the workup tomorrow. Also, I made an appointment with my internist on Thursday. I just feel something just isn't right.Thanks again,Pam
    sleepyhead 3 Replies Flag this Response
  • PLEASE take a look at the B12 misdiagnosis thread on this site - it is very long, but worth looking into. B12 is very underdiagnosed, and often goes hand in hand with anemia. Make sure they properly test your levels. B12 can affect neurological conditions, and can really affect your moods. I think this could be contributing to your condition. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • These problems have been going on for so long that it is increasing my depression (not to mention the fact that I can't get to the gym like I would like). I don't think I mentioned that I work 2 jobs (one full-time and one part-time) but that isn't unusual for me. Pam Working a full time job as well as a part time job.. maybe that is contributing to your tiredness and depression. Over work can do that. Maybe you are needing a change of lifestyle eg work situation
    taniaaust1 2267 Replies Flag this Response
  • Now that I see that you are female, I am wondering about your ovarian hormones and other female problem...fybroids, ovarian cycts and and number of things can effect hormonal balance. AND if you are 35 yrs and up could be perimenopause. If you are under could be PMS, or other hormonal fluctuations or even premature menopause...also are you on BCP....? and yes, yes, yes, DO take a very close look at those thryoid results...can't tell you the number of times I have seen someone suffering thinking their thryoid numbers are in the normal range when in fact the y are not and the doctor was wrong.....Joan
    Joan5555 316 Replies Flag this Response
  • Hey guys...Thanks for all your suggestions. I have had THS (within the new normal range) and b12 (433) checked and they came back fine. I am not on bcp but I am perimenapausal. I don't think it is the 2 jobs as this has been going on for apx 5 years. I wasn't working 2 jobs the entire 5 years. It seemed to get worse when I was only working the part-time job back in October '07. I went back to my internist who is refering me back to the neurologist for neurophychological testing. My mother did have Alzheimers. The neurologists is the one dr that seems to be wanting to get this addressed. I am really getting frustrated as I feel I am just being passed back and forth between doctors. I just wish they would all get together and try to figure out what is going on. I have been actively trying to get this resolved since Thanksgiving. I do appreciate all your suggestions. Thanks,Pam
    sleepyhead 3 Replies Flag this Response
  • Hey guys...Thanks for all your suggestions. I have had THS (within the new normal range) and b12 (433) checked and they came back fine. I am not on bcp but I am perimenapausal. I don't think it is the 2 jobs as this has been going on for apx 5 years. I wasn't working 2 jobs the entire 5 years. It seemed to get worse when I was only working the part-time job back in October '07. I went back to my internist who is refering me back to the neurologist for neurophychological testing. My mother did have Alzheimers. The neurologists is the one dr that seems to be wanting to get this addressed. I am really getting frustrated as I feel I am just being passed back and forth between doctors. I just wish they would all get together and try to figure out what is going on. I have been actively trying to get this resolved since Thanksgiving. I do appreciate all your suggestions. Thanks,Pam Please consider going to a good Oriental Medical doc, who will treat the whole body, mind and spirit. It may make a huge difference and get you on the path towards healing. I use allopathic medicine for testing and such, but treat my problems mostly with NAET, acupuncture, or kinesiology and massage. These forms of medicine work! Best wishesDOM
    acuann 3080 Replies Flag this Response
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