Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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heat+cool sensation switch continuously

Discussion in 'General Symptoms' started by kisekishiawase, Apr 13, 2018.

  1. kisekishiawase

    kisekishiawase sad

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    From years ago sometimes for minutes i feel heat - chill - heat -chill sensation on my body. Continously for couple of minutes and each heat/chill last short like 2 seconds and it goes in a row. Its like a blinking light or something.

    Does anyone know any idea what it is/have any experience?
    I just realized now that this is uncommon and ive asked some people but they dont know about it.
     
    Last edited: Apr 14, 2018
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  2. kisekishiawase

    kisekishiawase sad

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    No one knows?
     
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  3. 5150

    5150 Senior Member

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    I don't know. but we have a good doctor who's a member and might share his opinion.

    @Jonathan Edwards

    Dr. , are you able to help this person with her question? thank you.
     
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  4. kisekishiawase

    kisekishiawase sad

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    Thank you for your suggestion. :thumbsup:
    I remember i have read his posts before.


    I thought there are some people here who know or have experience in it.
     
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  5. 5150

    5150 Senior Member

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    Hello Forum members:
    Is anyone able to help this young person> She needs immediate attention. We have a special duty to our younger members, imo

    Kisekishiawase: why don't you try "@Jonathan Edwards" yourself? maybe he won't answer unless requested by the patient-in-need herself... idk.
    -----------------------------------------------------------------------------------------------------------------------------------------
    Does anyone know any idea what it is/have any experience?
    I just realized now that this is uncommon and ive asked some people but they dont know about it.[/QUOTE]
     
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  6. starlily88

    starlily88 Senior Member

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    I had left this site for a bit - due to getting too sick to post - when I came back 2018 I think I was told that Jonathan Edwards was no longer on this site. Ask Shoshana or one of the moderators (some of them left also).

    I do get chills that will last for hours. And I do get overheated also but not in a 2 second period - might be during 1/2 hour period. My CFS doctor told me the disease affects one's brain first, it is a virus.
    In particular - the gland (adrenal, thymus??) I forgot - but it is part of brain that keeps regulates our body temperature
    so we are reacting correctly- that temperature regulator in our brain does not work.

    With CFS - that temp control is broken. So we can't regulate our body temperature - thus we are freezing, then hot.
    It is very annoying, uncomfortable, and can drive one crazy. I don't know if this has anything to do with "sad's" problem but I hope this helps. Starlily88
     
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  7. kisekishiawase

    kisekishiawase sad

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    @5150 thank you for your help :)


    @starlily88 i see. Its unfortunate that some people not on this site anymore.

    Thats what confused me cause its switching like blinking light.

    So this is possibly due to the CNS?
    I dont know if its the body temperature or just what i feel. Or like flush or something. Or maybe like inflammation. But it can happen a couple times a day for minutes.

    I remember readin about thymus but it said that the organ doesnt needed anymore when we got older. :confused:
     
  8. I get things like this, but the switch is slower, not rapid.

    Your body temperature is regulated by the thyroid and adrenals. Those are regulated by the hypothalamus and pituitary. So it could be some kind of HPAT axis issue.

    Then there are the hot flashes of menopause which have to do with sex hormones.

    I've had those the past year or so, and those are more rapid, but I don't get a chill with it.

    It would be interesting to take your temperature with a thermometer during the episodes and see if your body temperature is actually changing.

    You can also use Dr. Rind's temperature graph to figure out if there is a thyroid and/or adrenal issue.

    http://www.drrind.com/therapies/metabolic-temperature-graph
     
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  9. starlily88

    starlily88 Senior Member

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    Caledonia thanks for the correction. AAHH - the thyroid and adrenals regulate body temperature. I have not had the ability to keep my body temperature at its normal (for me) state. My temp is so low, I cannot feel my feet, hands (do have Raynaud's) I have to take hot bath just to stop the chills.

    Now found out my thyroid levels are low, and I have anemia - no wonder I can't keep warm.
    I am freezing even if it is 80 degrees in my flat.
    Thank you for wonderful article by Dr. Rind.

    Sorry for your hot flashes - somehow I avoided them, so keep your chin up.

    I have met with tremendous resistance by any of my drs to run Complete thyroid test panel, including Free T3, Free T4, TPOab antibodies, TGab (hashimoto's screen). I don't get it - since I have subacute thyroiditis, and now am much worse.

    Found a lab that will run most any blood tests without scripts - costs a bit so may do this.
    Starlily88
     
  10. starlily88

    starlily88 Senior Member

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    @starlily88 i see. Its unfortunate that some people not on this site anymore.
    Thats what confused me cause its switching like blinking light.
    So this is possibly due to the CNS?
    I dont know if its the body temperature or just what i feel. Or like flush or something. Or maybe like inflammation. But it can happen a couple times a day for minutes.
    I remember readin about thymus but it said that the organ doesnt needed anymore when we got older. :confused:[/QUOTE]

    If you are freezing then hot in a few seconds - I would see a neurologist possibly, or endocrinologist, or start at a general practitioner doing blood work on your Vitamin D, B12, and magnesium levels. Having a chronic illness is very hard - because most drs are truly not familiar with the odd symptoms that occur in some of us.

    It is quite frustrating I know - especially since this is affecting your functioning. I assume you have been in the hospital Emergency room - for help - when I am in severe condition I do go to emergency - and I am surprised at what they find out - with all the equipment right at their fingertips.

    All of us at least me - have had to go to so many drs to find out what each new disease is - then I find out there is nothing to be done about it anyway - but I don't quite understand how cold/hot you get, how long its happening, and what diseases you have. So try to find a few different drs to go to - to get help.
    Starlily88
     
  11. Luckily, they're on the mild side, so I notice them, but they're not too bothersome. :)
     
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  12. kisekishiawase

    kisekishiawase sad

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    @caledonia @starlily88
    thank you for your post.
    Im not sure if its hormonal cause im still in middle 20 and i got it since i was in early 20 i guess, or before that.
    Ive run normal thyroid check too like t3 t4 tsh and it came back normal. But it was years ago.

    I dont know much about adrenal too but i guess i have cortisol problem.

    However sometimes i also got hot feet or hot face, sweating when im in bed/when im in an episode. i guess thats circulation problem or maybe CNS problem? Since i have pots symptoms too. But i dont know if its related.
     

  13. I just remembered, there is some other weird stuff I get, which is something I call "hot toes", where the toes on one foot feel hot not only to me, but someone else can also touch them and they feel hot, and also a prickling sensation on my cheeks, sometimes an itchy tip of my nose, and sometimes it feels like an ant might be crawling on my leg.

    Those are all neurological type symptoms.
     
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  14. Dechi

    Dechi Senior Member

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    It feels like what I have, except in my case the hot flashes are most probably due to perimenopause.

    It definitely sounds like a hormone problem. Have you seen an endocrinologist ? If not, you should.
     
  15. kisekishiawase

    kisekishiawase sad

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    I think i know this ant feeling but it happens only a few times to me.

    I have a weirder symptoms since i was in junior high school. When im sleepless or in worse condition.When im lying on bed. My half body temperature change according to sleepp position.
    So when i lay on my left side. My half left body will be warm and the right side will be chilly. If i change position the temperature change side too.

    Actually when im standing also get uneven body temperature. Chilly on hand etc. Body warm. But Cold sweat.

    But i think i gave up on that symptom. Cause its odd.
     
    Last edited: Apr 25, 2018
  16. kisekishiawase

    kisekishiawase sad

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    Isnt endrocrinologist usually check for diabetes mostly?
    I have long ago and from what i can remember i got blood test for t3 t4 tsh and blood glucose.
    I dont know what else should be checked
     
  17. pamojja

    pamojja Senior Member

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    Free T3 and free T4 are usually the more accurate for a thyroid panel. An endocrinologist would also test your female hormones, like estrogen, progesterone, and others like testosterone, dheas, and very important, cortisol.

    When I was staying through 2 years in Myanmar I naturally also had huge problems with the heat before monsoon. So taking only the sudden cold sensations/sweat in consideration it seem very likely caused by some neurological issue, as caledonia mentioned.
     
    Last edited: Apr 25, 2018
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  18. You know what - I just remembered very early on when I got this disease, I had a terrible problem with temperature regulation. I would rapidly go between too hot and too cold. The only temperature where I felt somewhat comfortable was exactly 74 F (room temperature).

    My doc had me do a full thyroid panel - the entire panel looked normal, except for the thyroid antibodies, which were sky high. I was diagnosed with autoimmune thyroiditis and started taking Armour Thyroid.

    The temperature issue gradually improved.

    The name of the test was Thyroid Peroxidase AB. AB is short for AntiBodies.

    It sounds like that's also what @starlily88 mentioned - TPO AB = Thyroid PerOxidase AntiBodies

    If that's what you have, it would be good to get that treated sooner rather than later. It means the thyroid is attacking itself and could lead to worse problems later on.

    Note that sometime after I got my last mercury filling out, my autoimmune thyroiditis went away, and I no longer need to take medication, and my full thyroid panel remains normal after several years.

    I think I was lucky and that most people would also need to chelate mercury to get the same result.
     
  19. kisekishiawase

    kisekishiawase sad

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    @pamojja thank you for posting. I have got the blood test check for estrogen, progesterone, long ago by the obgyn due to unregular period but that was long time ago.

    Ive tried to get the saliva cortisol checked by my own on the lab and it came back high. But i dont know if its accurate also most regular doctors dont rely on saliva test only blood test. But i read that the blood cortisol test isnt very accurate?

    @caledonia
    Are thymus and thyrois correlated? Cause ive seen it being mentioned a couple of times.

    Well i got mercury filling but taking it out in normal dentist clinic (no special clinic) will be a huge risk :(

    What are the test for full thyroid panels? Free t3 free t4 and the tpo ab?

    Some of the tests that are mentioned seem new to me i dont know if its available :( but thanks for the info i will try to find more info.
     
    Last edited: Apr 25, 2018
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  20. pamojja

    pamojja Senior Member

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    I made the experience that any test can fluctuate widely. So having a number of them can give a better picture. For a complete thyroid panel, as you said, free t3, free t4, TSH, TPO Ab (Thyroid peroxidase antibodies) and TG Ab (Thyroglobulin antibodies).
     
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