Needing Answers - Please help

Discussion in 'Fibromyalgia Main Forum' started by TickToc, May 16, 2009.

  1. TickToc

    TickToc New Member

    Would someone please tell me if they have had this, heard of this, or know what could be causing physical and mental fatigue every day when you wake up, but feel better before you go to bed? This is what happens to my husband every day. Here is what a typical day is like:

    He wakes up feeling both physical and mental fatigue, muscle soreness, achy, almost like a flu feeling. He then takes 125 mcg of Synthroid. In about 1 to 1 1/2 hours after taking the Synthroid, it starts making him hyper, jittery and anxiety. He takes an Ativan (0.5) to help these symptoms. He continues to have fatigue and will take about a 45 minute nap to try to recover. He gets up and walks around for some exercise. He then eats lunch. He is still fatigued in the afternoon. By 5:00 PM he is a little less fatigued. About 9:00 PM he starts feeling the best he has all day. He goes to sleep between 10 PM and 11 PM. He sleeps 6 to 8 hours, wakes up the next day once again feeling the physical and mental fatigue, soreness and achy.

    Has anyone else experienced this? This is just not right and we don't know what is wrong. This has been going on for years and it's getting worse. We met with a sleep specialist and they said it doesn't sound like sleep apnea because he has fatigue during the day, and that people with sleep apnea have “sleepiness” during the day. I spoke with his primary care doctor just the other night expressing how bad the situation is getting. He has run some blood tests and doesn’t know what is wrong. He did say he does not think it is depression.

    My husband is not able to function. It's gotten to the point he feels so bad that he can't go anywhere. He is only 50 and he should be able to function.

    I would appreciate anyone's thoughts or ideas on our situation. We are so frustrated and do not know what to do. I hope someone has some advice to share.

    Thank you so much!


    [This Message was Edited on 05/16/2009]
  2. ladybugmandy

    ladybugmandy Member

    hi lynne. how did this start? did it start with an infection?

    your husband could have any number of ailments. does he have a good doctor?
  3. Shananegans

    Shananegans New Member

    Despite what the sleep specialist says, I would still have a sleep study done. Sleep Apnea can cause fatigue during the day. I go through exactly what you described on a daily basis. I wake up almost feeling drunk every morning (or at least like I went out drinking the night before even tho I did not) and I have sleep apnea, been properly diagnosed twice. I can't sleep with a CPAP machine tho, so I do not treat mine the way I should and I experience exactly what you have described.

    Not saying it's apnea for sure but I would definitely get a sleep study done to rule it out.

  4. jaltair

    jaltair New Member

    This may help you ...
  5. elliespad

    elliespad Member

    Hi Lynn, Sounds like a classic case of Adrenal Fatigue to me. Long before complete Adrenal failure, there can be Adrenal Fatigue or Insufficiency. Is usually caused by ongoing stress. STRESS can be: Infection, longstand, undertreated Thyroid disease, burns, malnutrition, surgery, mental stress, lack of sleep, lots of things.

    People with Adrenal Fatigue tend to have LOW morning cortisol, (when it should be its highest). They may get a little rise during the day, then stay elevated at night(when it should drop off and let you sleep.) They typicall come alive around 6, 7, 8 p.m. (I used to), now I never come alive.

    You say your husband is taking Synthroid. That is a T4 only drug. T4 is your longer term, less active, form of thyroid hormone. Your body converts T4 into T3, which is your shorter lasting, but ACTIVE form of thyroid hormone. Your body can also convert your T4 into Reverse T3, which basically puts the brakes on metabolically, and renders T3 less effective. His body must efficient at converting T4 to T3 is order to get enough T3. He needs to have his FREE T3 and FREE T4 tested, to know if he is converting properly.

    NOT being able to tolerate normal doses of Thyroid hormones, can sometimes reveal an actual Cortisol deficiency. Thyroid hormones does NOT CAUSE Cortisol deficiency, but it can UNMASK one. Your cells need ADEQUATE Cortisol, in order to be able to use Thyroid hormones. Not having enough Cortisol can cause the T3 levels to rise, causing high amounts of thyroid hormones to build in the blood, making your free T3 and/or free T4 labs look high in range with continuing hypo symptoms, or causing hyper-like symptoms on doses of Armour which shouldn’t produce those symptoms. The latter can include anxiety or nervousness, light-headedness, shakiness, dizziness, racing heart, sudden weakness, nausea, feeling hot, or any symptom which seems like an over-reaction to Armour, but are in reality low cortisol symptoms. Low cortisol can also keep you hypothyroid with hypo symptoms.
    Without enough Cortisol, the thyroid levels rise, and bring on HYPERthyroid symptoms.

    So, you also need an Adrenal Stress Index done. This is a Saliva Test done 4 times a day, in your own home. You can order these online or get an Intergrative Dr. or Naturopath, or Holistic Dr. to order it if your Primary Care Doc won't. (Some states allow you to order these without a prescription)

    If your Adrenal Street Index shows Adrenal Fatigue, you should be prescribed Cortisol (or Hydrocortisone) 4 times a day. (Again, not like to be your Primary Care Doc) You didn't say if your husband still has his thyroid, but if not, he really needs all the hormones his thyroid used to make, T1, T2, T3, T4 and Calcitonin. The only way to get all these is with a Natural Dessicated Hormone. (Armour, Westhroid, Naturethroid) You and/or he may want to read up on all this and see if it sounds like something worth testing.

    Also, your body needs adequate amounts of certain nutrients in order to convert T4 to T3: Iodine (iodoral), Iron (check Ferretin) Potassium, Sodium. Selenium, Zinc, Tyrosine.
  6. heapsreal

    heapsreal New Member

    I was very similar to your husband. Is he a shift worker? People with cfs as well as shift workers can have a carcidian rythym disturbance. This is where your body thinks day is night and niight is day. Melatonin can help with this. In my case melatonin didnt help me sleep as such but with sleep meds improved my sleep and decreased my urge to sleep during the day. Also look into what meds he is on. Some antidepressants need to be changed from taking in the morn to taking at night etc. I suggest googling carcidian rythym disturbances. Good luck.
  7. kat0465

    kat0465 New Member

    it sounds like the adrenal thing to me also,the best i usually feel is late evening almost at bedtime.i was found to have just about No cortisol until evening,then it goes up a little.

    has he had a saliva test or blood test check all those Hormones( cortisol, dhea, testosterone?)

    it's very frustrating to go to bed, feeling maybe somewhat Human, then waking up & feeling like a mac truck has run you over.Even in sleep there's no relief :(

    check the Adrenals, that would be a start.
  8. TickToc

    TickToc New Member

    We're not sure how this started. As far as does he have a good doctor, all I can say is he hasn't found out what is wrong yet and it's been a long time.

  9. TickToc

    TickToc New Member

    He has had his Free T4 and Free T3 tested and they are about in the middle of the reference range. He did do the Adrenal Stress Index and the levels were normal.

    You were wondering if he still has his thyroid. He was diagnosed years ago with Graves' Disease and had RAI treatment, so I would say his thyroid is pretty well gone. He did try Armour at one time and broke out in a terrible rash from his waist up, front, back, and all over his arms. He also tried adding Cytomel with the T4 and that just caused more hyperness.

    There is one blood test that has repeatedly come back low and that is the
    IGF-1. His doctor sent him to an endocrinologist with expertise in growth hormone and she and her colleague both said that this test does not indicate a growth hormone deficiency. They said it could be low for a lot of reasons including lack of sleep or exercise.

    Thank you for all the suggestions. Can you think of anything else?

    [This Message was Edited on 05/17/2009]
  10. TickToc

    TickToc New Member

    No, he is not able to work due to the severe physical and mental fatigue that he has.

  11. greatgran

    greatgran Member

    Don't have an answer but I have the same problem. In fact I just posted about low cortisol in the morning before seeing your post. Several years back I had the cortisol spit test done and my cortisol levels were so low in the morning but would rise at night that is when I feel my best. I can't help but sure can relate. Hope you get some good answers. As others have posted it does sound like a coritsol problem. If your husband gets it checked make sure its done early in the am around 6 or 7 if he has the blood test. When they did the blood test on me around 3 pm and mine was normal so as far as my MD goes I am ok. A neuropath was the one that did the spit test but I can't afford to go back to him since insurance doesn't cover it.

    Hope you find an answer cause I know how miserable your husband is.

    God Bless both of you,
  12. jasminetee

    jasminetee Member

    This is very common in ME/CFS. Most of us feel better after we've been up for many hours and most of us have a time of day when we feel better. It's called "a window" it's a time period when we're at our best. Most healthy people are at their best first thing in the morning, but with ME/CFS our cortisol and hormone levels are very skewed and causes problems like this.

    I do what I can when I feel well, sometimes now that's 3 am usually for about a week every month which goes exactly with my monthlies, so you can clearly see the hormone connection.

    There isn't anything I've been able to do about it except go with the flow.


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