Discussions By Condition: I cannot get a diagnosis.

fatigue and fog - my turn to ask....

Posted In: I cannot get a diagnosis. 33 Replies
  • Posted By: Joan5555
  • July 9, 2008
  • 10:54 AM

It is not thryoid and not the classic symptoms of chronic fatigue and no classic symptoms of sleep apnea. I am in perimenopause but long before this I was suffering the same symptoms and the kick off was Graves Disease at age 41 (now 49)...this is now resolved (Graves) and I do not have this autoimmune disease anymore....values are negative for this disease and thryoid numbers are all ok. I do not have Hashimotos. This is the pattern:

Often wake up feeling a bit ok, or or simply wake up feeling fatigued...fatigued not tired as in not having slept well...but fatigued...head feels tired....Sometimes I do not feel fatigued, then in this case I feel quite fuzzy headed instead.... like I am drunk. The day after I work...oh boy am I fatigued...but this is not ALWAYS the case....

In any case, either fatigue or head fuzz, by early evening, very, very,very, very often, (but not always), my symptoms improve...start feel normal evening and night. I would like to feel the way I feel in the evening during the day....my hope....

Any ideas what might be causing this? Joan

Reply Flag this Discussion

33 Replies:

  • Many people are told that their thyroid is normal when normal levels (such as a TSH above 2.5) can cause symptoms. Ask for your last results... Kiera
    Anonymous 42789 Replies Flag this Response
  • thanks for your concern, Kiera, but I have had thryoid problems for over 10 years and am very familiar...it is not thryoid...almost wish it was! Any other suggestions anyone? Joan
    Joan5555 316 Replies Flag this Response
  • Have you had you B12 levels checked?I am still dealing with my fatigue, and brain fog along with dizziness and cognitive and motor difficulties. I was taking B12 and folic acid b/c my B12 level was 388 instead of 400. Many I know take B12 and it helps a lot. It didn't in my case so I am looking into the possibility of my homocysteine level being low (normal range 4.0-8.0). Just a thought.
    dizzy lizzie 192 Replies Flag this Response
  • I have been suffering such GRAND fatigue for weeks now. I can't take it anymore. All my docs just blow me off. I was clinically diagnosed with fibromyalgia a few years ago but it really hasn't bothered me for years. Is this extreme fatigue part of this? I can't see my regular internist until mid-August but was able to get an appt with her husband tomorrow. I hope something happens. I have 3 sons at home, ages 14, 8-1/2, and 2-1/2 and my youngest is the most high-energy kid i've ever had. He keeps me on my toes and is exhausting. But, even when I rest, I dread taking them anywhere, beach, grocery store, you name it. I get so winded, sweating profusely. I take few meds and I can't see that it's med related. I had a bad car accident in Oct 2002 and had a traumatic brain injury. I've been struggling all these years. I've fallen thru the cracks of every program in my state. I finally have someone working with me from independent living who referred an OT to me. I am not the same person as before my TBI and it just brings me down more and more. I can't live this way. I'm tired and nonproductive. Any thoughts? I'd so appreciate it. Oh BTW, i did have endocrine testing last year which was all normal.
    MommyPrincessQueen 5 Replies Flag this Response
  • Forgot to mention that I just ordered B12 injections in the mail out of desperation. Hope that will help some. I'll talk to the doc about this tomorrow.
    MommyPrincessQueen 5 Replies Flag this Response
  • Oh, my goodness...I am so sorry to hear others suffering in a similar way that I am! I have heard a lot about B12 and I do not believe my levels are low last time I checked...doesn't hurt to check again, I think... I often feel worse in the AM and improving towards PM...this is the biggest mystery...why is this so? What bad thing is happening in the day that clears up towards eveing? Any guesses? I will help anyone else if I can....just to note (very simple explanation...) that TSH (thryoid) levels should be between 0.3-2.5....over 2.5 means you most likely need thryoid supplement....Joan
    Joan5555 316 Replies Flag this Response
  • Joan,My fatigue is also often worse in the morning and resolves in the evening. I can't figure out why either. My Rheumatologist called it unrefreshed sleep. It's possible but there are also times when I wake up feeling fine but then feel tired starting 1-2 hours into the day. It's also a bit mysterious to me that the day after I exercise I feel close to being right again and then the next day I am worse. I wrote on another thread that I am looking into the possibility that my homocysteine level is low.Homocysteine is an amino acid they monitor on the high end as an indicator for heart disease. I have very low BP and a slow heart rate. The normal level is 4.0-8.0. For those in the high range, they use B12 and folic acid to lower it. Athletes use B12 to keep it low during exercise . I was taking B12 and folic acid for my energy and memory problems and they were making me feel worse. So my hypothesis is this: if my homocysteine level is low, it would make sense that exercise might raise it to a normal range and B12 and folic acid would lower it further making me feel worse. Of course there's no way to know until I convince a Dr to do the blood test. I am also going to lobby for the FT3, FT4 and cortisol tests when I go in for pre-op testing. If you figure anything out, please let me know and I will do the same.
    dizzy lizzie 192 Replies Flag this Response
  • Wow! I thought I felt alone in all this crap. It's not nice to suffer but at least someone is suffering with me. I sleep extremely good at night, day, anytime. With my depression, I could sleep life away. I have three young sons, ages 14, 8-1/2 and 2-1/2 and its hard to do things with them without getting winded, let alone leave the house. My brain wants to accomplish so much but my body holds me back. I take Ritalin and still sluggish. Like you, mornings are awful and I just can't get going. As evening falls, I suddenly start feeling like myself again. It's just driving me crazy. I begged to get in to see a doctor this afternoon. That means I have to push myself to take a shower and get dressed, of which I have to lie down between shower and getting dressed. I put minimal make up on in the car with the a/c on as I get so sweaty from just the littlest movement. Is there a name for all this? Struggling in Wisconsin
    MommyPrincessQueen 5 Replies Flag this Response
  • Dizzy and Mommy I can't believe how much you sound like me! Honestly it is rare for me to find such similar folks! One thought is that all my problems began with my Graves Disease, thryoid problems, and I have never been the same since. Though the Disease is in remission and has been for sometime, my feeling it that my endocrine system never fully recovered and I may be experiencing a different form of chronic fatigue. I do not have the classic symptoms nor all of them to "qualify" but so far this is all I can come up with! I have to say this diagnosis is not exactly a happy thought! Unrefreshing sleep is a possibility and I have looked up on sleep disorders....that is something to explore more with the doctor I think...again I do not have any classic symptoms...I am taking a mild sleep medication now for two weeks...I now sleep through the night...but I am still fatigue...like you sometimes wake up relatively ok and then after a coulple of hours it hits....and as we said, often towards evening I feel better...well, at least we have the evenings! I try to do a lot then! I do have to say that when I have found others like me from time to time it has turned out to be their thyroid and a doctor who is out of touch and does not realize that the TSH needs to be between 0.3-2.5....some doctors say up to 5 is OK...it is not...so for you two, that is definitely something to consider....unfortunately for me my thyroid numbers look great! I am actually thinking of printing out this thread and showing it to my doctor and saying "SEE I am not the ONLY one"....I have a good doctor...but I need HOUSE! Thought on the exercise: it is possible that the exercise lowers cortisol....for me higher end of normal cortisol makes me feel fatigued...I know this as I tried adrenal support (herbal cortisol under docs orders) and by blood worked it raised my cortisol and I definitely was feeling even more fatigued with that for two months! Exercise would lower this cortisol and actually at the same time boost the endorphins....and speaking of that....so for some an antidepresent that increases the feel good hormones in the brain, actually serrotin (sp?) sometimes helps....serrotin did nothing for me...it is so complicated! Interesting I also tend to have lower blood pressure and lower end pulse........Joan
    Joan5555 316 Replies Flag this Response
  • Thank you...all of you! We may be suffering the same horrible symptoms but its comforting to know that we all have something similar and that I'm not alone in this struggle. I've been thoroughly worked up by an endocrinologist who found nothing wrong. My regular doc put me on potassium supplements about a year ago as my potassium is just borderline low. This hasn't made any difference in the way I feel. Just today I saw my regular doctor's husband (they work together...she part time, he full time). I was lucky to get an appointment today. I thought he would have some ideas for me but I came out feeling awful. I have a family friend how is a retired MD and she keeps insisting to my Mom to have me checked for Lyme's disease. Well, today the doctor took blood to check for Lyme's at my request. The only other lab work he requested was a TSH. WHY?!?!?! I've had my thyroid thoroughly tested for many years now with no results. I even told this doctor today that I'm not afraid of needles so please, by all means, test me for everything under the sun. I need a diagnosis!! One thing that was strange for me today is that I was cold, really cold. Normally, my head is always constantly on fire and I sweat buckets. It's really disgusting and I don't know what causes it. Next week I see a new neurologist. I hope its worth my trip. I'm tired of doctors not finding the root cause of all this crud and dispair. I guess, at this point, all we can do is just share information and hopefully we can all get the correct diagnosis.
    MommyPrincessQueen 5 Replies Flag this Response
  • One other thing that I am thinking is sleeping disorder...now it may not present with the usual symptoms...but may be worth an ask to the neurologist...I may be heading that route as well...I do know that depression can present with patient feeling like poo in the AM or Day and improving towards evening...I am not suggesting that we are depressed...I am not!...but perhaps the same "chemistry" is involved without the "depression"....this is all just my thinking....DO keep posting as you test...I will do the same...I get the results next week of a lot of blood work as well........I hope we can all help each other! Joan
    Joan5555 316 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Hi all! Very interesting to read your posts, I have same problems, too. And I feel much better at night. My blood pressure is also low. And recent days it's even lower. Systolic 8 mmhg and diastolic 5 mmhg! Couple of days ago I've been trough some blood and urinary tests but dr. couldn't find anything. I always wanna sleep and after some sleep I can work for half an hour then I need to rest again. I have dizziness as well. Starting from today I have chest pain on the left side. So that made me think about a spleen disorder. I've just read on another website that spleen doesn't work at night (or work min.) So it does not produce white blood cells. White blood cells are fighting against patogens. And in some cases it also fights against one's own body. Some parasites may cause to this. If you have a pet or a garden you should also be checked for parasites such as leishmania donovani, ancylostoma caninum... Iron deficiency anemia, thalessemia have the same symptoms, too. (Paleness, headaches, fatigue, shortness of breath, jaundice, spleen enlargement are the symptoms of thalessemia.) BTW, we should be careful with vitamin Bs, as I've read form dr. Oliver Sacks's book (The Man Who Mistook His Wife For a Hat), taking vitamin Bs for a long period of time may cause some neurological diseases. It was a great book with real stories by the way. I will ask to my dr about these illnesses. At least I will try since most of the dr.s dont like this kind of questions from patients as you possibly experienced, too... just wanted to share... Hope you find a better treatment soon! :) Katrien.
    katrien_dv 1 Replies Flag this Response
  • Thanks, Katrien, for your information. I am sorry you are suffereing in this way, too. Do let's us know how it is going for you and we can do the same. It occurred to me that maybe we all should write some basic stats (not sure what constitutes basic but I will give a try...) about ourselves and see what we might have in common...perhaps this is a clue... 1. Age 49 (menopausal)2. Woman3. Thyroid disorder (autoimmune), now resolved4. tend to have lower end of pulse, and lower body temp...not dramatically so5. will get more blood tests soon and will post some results6. What else might be good? Joan
    Joan5555 316 Replies Flag this Response
  • Have you had you B12 levels checked? I am still dealing with my fatigue, and brain fog along with dizziness and cognitive and motor difficulties. I was taking B12 and folic acid b/c my B12 level was 388 instead of 400. Many I know take B12 and it helps a lot. It didn't in my case so I am looking into the possibility of my homocysteine level being low (normal range 4.0-8.0). Just a thought.with 388 b12 you still are deficient. neourological problems can set in at 500, have you had a uMMA test done.
    sickinva 87 Replies Flag this Response
  • Hi all! Very interesting to read your posts, I have same problems, too. And I feel much better at night. My blood pressure is also low. And recent days it's even lower. Systolic 8 mmhg and diastolic 5 mmhg! Couple of days ago I've been trough some blood and urinary tests but dr. couldn't find anything. I always wanna sleep and after some sleep I can work for half an hour then I need to rest again. I have dizziness as well. Starting from today I have chest pain on the left side. So that made me think about a spleen disorder. I've just read on another website that spleen doesn't work at night (or work min.) So it does not produce white blood cells. White blood cells are fighting against patogens. And in some cases it also fights against one's own body. Some parasites may cause to this. If you have a pet or a garden you should also be checked for parasites such as leishmania donovani, ancylostoma caninum... Iron deficiency anemia, thalessemia have the same symptoms, too. (Paleness, headaches, fatigue, shortness of breath, jaundice, spleen enlargement are the symptoms of thalessemia.) BTW, we should be careful with vitamin Bs, as I've read form dr. Oliver Sacks's book (The Man Who Mistook His Wife For a Hat), taking vitamin Bs for a long period of time may cause some neurological diseases. It was a great book with real stories by the way. I will ask to my dr about these illnesses. At least I will try since most of the dr.s dont like this kind of questions from patients as you possibly experienced, too... just wanted to share... Hope you find a better treatment soon! :) Katrien.hi,i don;t know bout a normal b12 person, but i can tell you, if like myself, who is b12 deficient, and have neurological problems, only b12 is going to fix it, and plenty of it.
    sickinva 87 Replies Flag this Response
  • Joan, My fatigue is also often worse in the morning and resolves in the evening. I can't figure out why either. My Rheumatologist called it unrefreshed sleep. It's possible but there are also times when I wake up feeling fine but then feel tired starting 1-2 hours into the day. It's also a bit mysterious to me that the day after I exercise I feel close to being right again and then the next day I am worse. I wrote on another thread that I am looking into the possibility that my homocysteine level is low. Homocysteine is an amino acid they monitor on the high end as an indicator for heart disease. I have very low BP and a slow heart rate. The normal level is 4.0-8.0. For those in the high range, they use B12 and folic acid to lower it. Athletes use B12 to keep it low during exercise . I was taking B12 and folic acid for my energy and memory problems and they were making me feel worse. So my hypothesis is this: if my homocysteine level is low, it would make sense that exercise might raise it to a normal range and B12 and folic acid would lower it further making me feel worse. Of course there's no way to know until I convince a Dr to do the blood test. I am also going to lobby for the FT3, FT4 and cortisol tests when I go in for pre-op testing. If you figure anything out, please let me know and I will do the same.hello, i think all of you should go into the b12 deficiency commonly misdiagnosed forum, to lower homocystien, you need plentiful amounts of b12 in order for the folic acid to do it's job along with b6, for some people folic acid works as a negative, so you should try folinic acid, hear all bout this in the other forum.
    sickinva 87 Replies Flag this Response
  • can give the direct link to that forum? Is it here? Do people discuss it there and help? Joan
    Joan5555 316 Replies Flag this Response
  • can give the direct link to that forum? Is it here? Do people discuss it there and help? Joanhi, yes, scroll all the way down til you see jump to forum, click on the arrow, and click on,, tell us your medical story, then you'll see b12 commonly misdiagnosed, sally pocholok, take you right in the forum.
    sickinva 87 Replies Flag this Response
  • well, I check the b12 deficiency forum...and with 85 symptoms (on page 203 or or or therearound of that thread) I do not have hardly any of them....I cannot compare to the suffering of those folks! Some of you may want to take a look, however, just in case you find a lot of your symptoms on the list...nontheless, I will check B12 by blood soon. Joan
    Joan5555 316 Replies Flag this Response
  • I Have Had Thyroid Problems For The Last Several Years. It Runs In My Family. It Just Never Darned To Me That Is What I Had When I Started With All My Problems. My Numbers Have Been Stable For The Last Two Years. My Regular Gp Doctor Said My Tsh Numbers Were Ok. I Still Felt Like I Was Just Going To Die While He Was Treating Me. He Finally Saw I Was Getting No Better And Said For My To Go To A Endocrologist Which Was The Smartest Thing He Had Said To Me. The Endo Doctor Finally Got Me Back To Feeling Normal Again. I Have Been Going To The Endo Doctor For Several Years. I Cut The Dosage Of My Thyroid Medicine From 5.0 Mg To 2.0 Mg. He Said Last Week That I Could Start Weaning Myself Off Of The Medication But I Tried For Two Days And My Feet And Hands Got Prettty Cold And I Was A Little Dizzy So I Am Going To Try 2.5mg Every Other Day. I Am 60 Years Old. If You Think You Have Thyroid Problems Do Not Go To A Regular Physician Because It Is A Waste Of Your Energy And Money. Go To A Specialist.
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.