Fluctuating Body Temperature????Anyone?????

Discussion in 'Fibromyalgia Main Forum' started by MsE, Sep 7, 2009.

  1. MsE

    MsE New Member

    Supposedly my thyroid is under control with Synthroid, supposedly the "only" thing wrong with me is this stupid CFS. So--why does my body temperature fluctuate wildly? I get up in the morning, I feel waaaaay too hot, sweating as during menopause though I'm now 74, and my temp is 96.4. Then, later in the day I am freezing, and it is 97.5. Once it a while it will go all the way up to a below normal 98.2 or 98.3. What the heck is going on? My blood pressure is also fluctuating from 114/78 to 154/89. Is this "just" more CFS stuff or what?

    Let me add that I have never had such a case of insomnia as during the past week. I am waking every hour or hour and a half. Pills don't help much. If I use a sleeping med I can manage three hours before I wake. That's it. Help!!!
    [This Message was Edited on 09/07/2009]
  2. MsE

    MsE New Member

    Pretty please, with sugar on it, if you have had this experience, let me know. It would be reassuring to know I'm not alone in this weird new symptom. Please respond. Thanks.
  3. teller7

    teller7 New Member

    I have exactly the same symptoms that you have. Have had them since I crashed from the virus that caused the CFS. In the morning my temp is way low and slowly goes up to just about 98 at night. And my blood pressure is always higher in the morning. Then levels out during the day. Seeing as so many drs don't believe or know a darned thing about CFS they just look at me stupidly when I tell them what's going on. I've had every test in the book for every disease you can think of and most of the tests come back fairly OK. My neurologist looked at me in shock when I told him that sometimes my temp is around 95. He said my God that's almost hypothermia. But he did nothing about it or suggested anything to help me. And he's a specialist for God's sake. We're on our own here I'm afraid. But you are NOT alone in your symptoms for sure. I don't have any answers as to what we can do about it though. That's the sad part. I hope you get more replies to this question. It will be interesting to know how many others are experiencing this. And maybe one of them has been lucky enough to find a dr who figured it out. I'm not holding my breath though. Good luck MsE and like I do just go with the flow and try not to let this get you upset. Like I said - YOU ARE NOT ALONE
  4. teller7

    teller7 New Member

    I forgot to add that supposedly my thyroid is under control too. I take the generic of synthroid. I get my thyroid tested every few months. The drs always say it's good. In some way I don't agree with them, but they just go by the numbers and you can't argue with them. Know what I mean?
  5. richvank

    richvank New Member

    Hi, MsE and Carol.

    For what it's worth, these low and fluctuating body temperatures most likely mean that your basal metabolic rate is low and is varying over time.

    In a normal, healthy person, the thyroid regulates the basal metabolic rate by adjusting its output of hormones, and the cells of the body respond to these hormones (mainly to T3) by changing the gene expression of enzymes in the mitochondria. Most of the heat produced in the body comes from oxidation of food (mainly carbohydrates and fats) in the mitochondria of the cells.

    In CFS, unfortunately, the mitochondria are dysfunctional. They are not able to respond in a normal way to the thyroid hormones, because some of the enzymes in them are partially blocked. As a result, they produce less heat than normal, and the body temperature drops down.

    Normally, the "thermostat" in the body is located in the hypothalamus, which is part of the brain. The hypothalamus produces a hormone (TRH or thyroid releasing hormone), which in turn signals the pituitary gland, nearby, to produce TSH (thyroid stimulating hormone). TSH, in turn, controls the output of T4 and T3 by the thyroid gland. So by adjusting its output of TRH, the hypothalamus normally can control the body's temperature.

    However, in CFS, the hypothalamus can also have problems, which can cause its temperature "set point" to change with time. So now the thermostat is wacko, too!

    According to my hypothesis, both these problems result from glutathione depletion. In order to fix them, I've found that it's necessary to lift a partial block in the methylation cycle, which is holding the glutathione level down.

    Over the past couple of years, I have posted many times on the board about testing to see if this is the problem in a particular case, and treating it if it is in fact present. You can probably find the information by searching on richvank. If not, you can email me at richvank at aol dot com, and I will send you the information. I am not financially involved with the test or the treatment. It is helping about two-thirds of the people who are trying it. The cost of the test is $300, and the cost of the treatment is less than $3 per day.

    Best regards,

    [This Message was Edited on 09/07/2009]
  6. MsE

    MsE New Member

    If it's all right with you, Rich, I'm going to copy your post and take it to my doctor. I have trouble remembering the right words, and you have explained beautifully. Is that okay with you? Thanks, MsE
  7. MsE

    MsE New Member

    I do appreciate your telling me that you have the same symptoms. It does help to know I'm not alone in this situation. I have decided that I am going to a different doctor in our clinic, a woman. I think she may be a bit more understanding. My doc is supposedly one of the best in our area, but once he pinned the CFS label on me, he seems to shove any complaints I have, any symptoms, into the CFS bag and I feel like he is, symbolically, patting me on the head and telling me to "pull up my socks and live with it." Not unkind, not unsympathetic, but at a loss. I do not think he really hears me.

    But now I feel inspired to give it one more shot. Thanks again.
    [This Message was Edited on 09/07/2009]
  8. richvank

    richvank New Member

    Hi, MsE.

    That would be fine with me.

    Best regards,

  9. AuntTammie

    AuntTammie New Member

    too tired to write much now, but saw this and wanted to tell you that I can completely relate, too
  10. sickofCFIDS

    sickofCFIDS New Member

    first of all, MsE, YOU ARE DEFINITELY NOT ALONE!!!!

    i have been experiencing this for about a year or so now........
    first, let me say that i have had severe ME/CFIDS/FM for 6 years now. i say "severe" because i am one of the "lucky" ones who gets to spend approx. 70% of the time bed-ridden.
    but, about the constant body temp fluctuation....... i have ALWAYS had a "normal" body temp of about 96.8- 97.4. i have been that way as long as i can remember. i have also spent over 25 yrs of my life having dr's tell me that i am "crazy" over this. at any rate, since i've become ill w/ these diseases, i constantly run a temperature, especially on my 'bad days". when i am sickest, you can bet your last dollar, that i am running a temperature of at least 2.5 - 3 degrees. i, personally, have always just put that off to "these diseases are viral related, hence the temperatures"?? but who am i to say? that has just been my personal beliefs......
    at any rate, about a little over a year ago, i started getting these HORRIFIC hot sweats happening. i literally get so soaking wet that i have to keep a towel w/ me at all times. even my legs and arms get soaked from sweat. my neck, face, chest and back are always the worse. but as i am laying there literally dripping in sweat, i also then get freezing cold w/ goosebumps as i'm sweating??
    i have told this to both my holistic dr and my Pcp, and neither one of them have even the slightest answer for me...... at first, they tried to tell me that it was just "menopause". i am 46; HOWEVER, i had a total hysterectomy done at 29 yrs. old, so it is IMPOSSIBLE for this to be menopause. i went through an immediate menopause within 1 month of having the hysterectomy and i take natural estrogen and progesterone, so i KNOW THAT THIS IS NOT MENOPAUSE, but i cannot get a dr to care!!! i, personally think that they have NO IDEA what this is, so they just take the "easy way out" and blame it on menopause...
    i know, firsthand, just how MADDENING that this is!! believe me when i say that i feel for you!! i can't get anyone to understand how not only maddening that this is, but it also is DEBILITATING!!
    there are times that i am having a fairly "good" day, as far as the ME/CFIDS goes, but then i get these horrific sweats and they are every bit as debilitating as my "bad days" of being sick are. i can't even get dressed or stay dressed when this happens. my husband just sits and shakes his head w/ frustration over this. God love him, as he will constantly get me cold wet towels that i can wipe off with, but then, like i said, i get freezing cold during it, too?? i don't know if you experience the freezing with it or not?
    i have constantly had thyroid test done since i became ill, and in the early years, i was told that i had "hyothyroidism", which is "low thyroid". i was put on natural thryoid meds, and nothing changed, so i was taken back off of it. i had some test done where they did some kind of "radio-active" type pill that i had to take and then they did some kind of test like 3 hrs later?? i can't remember all of it, as it was about 5 yrs. ago, and you know the "brain fog", so this is the best that i can remember of that.
    but recently, i just had more thyroid testing done and this time, i was told that i have an OVER ACTIVE thyroid?? i have to get a more complete panel of testing done, but i first have to have a day that i feel well enough to get there.... i am also supposed to see an endocronoligist in oct. i had to see him back 5 yrs ago when i was told that i had the opposite problem. truthfully, i have very little faith in him, as he does not even believe in ME/CFIDS!! he openly admitted that to me when i saw him the last time.
    i will see what my holistic dr has to say about this when i get the complete panel of bloodwork done and probably go along w/ whatever he says about it. he is the dr. that i trust the most.

    also, thank you so much, rich, for your knowledge of how all of this works in our bodies!! you're obviously very educated!
    i have read over the years all about all that you just shared. i "know" most of what you said, but "knowing it and understanding it" are 2 entirely different things:)
    i can't remember off the top of my head what my levels were and i am unable to get out of bed right now to get to the paperwork, but i know that one of my levels was almost nonexistent, and another one was at the very top of the "range"..... the top of the range was 32 and mine was 30...... the other one was 0.17 and the "range" is supposed to be like 0.35-2 or 3?? someting like that?? i think that one of them was a "RT3" (reverse T3) and the other was either the T4 or TSH..... i think it was the one that is the "Tfree"??? i'm not completely sure, like i said, without checking the papers, but for some reason, this is what i'm "remembering".... lol... for whatever "my remembering" is worth----

    MsE....... i know that it doesn't really "help much" to know that you are not alone in this, but for what it's worth, you're NOT!! and you ARE NOT CRAZY!! or if you are, then i AM TOO:) LOL!!!! not that any of this is "funny", sorry, but i just wanted to make you smile for a minute!:)
    as soon as i find out more, i will post it and let you know....... who knows-- maybe we'll get some answer??? doubtful, but there is always HOPE!!

    sorry MsE, i just went back and read your original post again, and i saw that you said that you do get "freezing", too....... but is it while you are sweating or not? that was what i was wondering, because, i get them both at the same time. i will be soaking wet w/ sweat, but then at the same time, i am covered in goosebumps and freezing?? crazy, isn't it?!! i just wanted to "edit" this because i saw that you did u say that you get freezing cold, too, and i had asked that originally.
    peace, light, joy, laughter and many blessings,
    teri rainspirit
    [This Message was Edited on 09/07/2009]
  11. luckyman

    luckyman New Member

    My temperature can vary widely, but is generally low. Anywhere from 95 to 99. I've had multiple thyroid tests, scans, etc, they've always have come back normal.

    Rich - Thanks for the explanation. Sounds solid to me. I'll have to read more about your protocol in treating the methylation cycle block.
  12. jasminetee

    jasminetee Member

    I'm always freezing and sweating. I don't take my temperature though, whenever I have in the past it's been 98.5 to 99.4.

  13. greatgran

    greatgran Member

    This is one of my symptoms, in the afternoon I chill go to bed the same then awake in the wee hours of the morning hot and sweating. I do not have thyroid problems so just thought it was CFS.. It is like a hormone imbalance, not sure which hormone but have the same problems. My temp goes from 94 to 99 have mentioned this to my doc but haven't any answers..

    Keep us posted will be in touch later,
  14. MsE

    MsE New Member

    Thank you. I'll take it with me when I see the doc. Don't know if it will help, but maybe....sure worth a shot.
  15. MsE

    MsE New Member

    Someone asked if I felt cold as well as hot. Well, my tempt is very low in the morning, but I feel hot and sweaty. However, that was just my head and upper body. My arms and legs were cold to the touch. My blood pressure is quite low in the AM when I get up, but it shoots up with any activity, even working at the computer or eating breakfast. Duh.

    Last night when I went to bed I was freezing. My blood pressure was waaaay up and my body temp had made it all the way to 97.something which is normal for me.

    But enough about me. :) (Wasn't that line in an old movie?) I'm just totally relieved to learn that you guys have been encountering the same weird stuff. I am much better and going with the flow once I learn others are flowing along with me. I will, however, see another doc.

    Oh, by the way, as I write this I'm cold. Go figure. Thanks again for your input. MsE

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