Is there anything I can do about being so hot all the time?

Discussion in 'Fibromyalgia Main Forum' started by pepper, Mar 25, 2006.

  1. pepper

    pepper New Member

    I saw this referred to on another thread about thyroid and thought I would ask follow-up questions.

    I am hypothyroid and take Synthroid(T4) and Cytomel(T3). The doctor doubled my Cytomel in Jan. This past week I have also increased my Synthroid. I have not noticed any change in any of my symptoms.

    When I first got sick with CFS/FM 13 yrs ago, the first symptom I noticed besides the exhaustion was feeling so hot all the time. I was teaching at a rural school in freezing temperatures and did yard duty all winter in my spring jacket.

    The past 12 summers have been unbearable. I have broken the central AC in this house twice by having the temp too low. So I try to keep it reasonably cool (although visitors have to wear sweaters) and sit or lie in front of a fan.

    I am dreading the summer. I cannot sit outside any more so I spend most of the summer in the AC after spending the entire winter inside.

    Is there anything I can do about this? It is around 0 degrees (Celsius) today and it is perfect weather for me! Anything warmer is just not comfortable.

    Thank you for any suggestions.

  2. kellyann

    kellyann New Member

    Maybe you need your hormone levels checked? I know I get so flashes, when I forget to take my hormone pill.
    I saw your picture, what a lovely dress you were wearing! You looked great!
    Take care!
  3. Pianowoman

    Pianowoman New Member

    I was looking at the Canadian Clinical Case Definition and your symptoms are listed under Neuroendocrine. I would agree that getting all your hormones tested might be helpful. Perhaps even a consult with an endocrinologist would be useful. It sounds like you are pretty uncomfortable and there must be a way to alleviate this.

  4. Bunchy

    Bunchy New Member

    although I seem to be alone in the symptom manifestation when exposed to heat.

    My hands and feet will get extremely painful and feel (but not look) very swollen. I also get a weird feeling that I am going to explode as the heat keeps on and on building internally - this only happens when I am exposed to temps above about 24 degrees Celsius. Along with this will be a feeling of my brain being detached from my body.

    I literally *HAVE* to keep cool - the two or three times I have not been able to get into a cool place for a period of time have led to serious deteriorations in my health.

    I live in the UK where we don't have a/c but I live in London and, believe it or not, it can get very hot in the Summer sometimes.

    I bought two portable a/c units and literally have them blowing on me all day and night until it cools down again. I also put my feet in a bowl of cold water if they start hurting.

    Unfortunately the docs have found no apparent reason for this and there is nothing that can be done. The advice I was given was just to try to keep as cool as possible and not do anything AT ALL (body heats up otherwise) when it is hot.

    I am seeing an endocrinologist for other reasons in a couple of months and I will ask him about this. If he has any ideas I will let you know.

    For now, just know that you are not alone with this problem and I dread the summers too.

    Hugs Bunchy x
  5. lenasvn

    lenasvn New Member

    I don't know much about the subject, I only remember reading somewhere that it is tricky business to get the exact levels right in thyroid disorders. You have your own very personal level, and it takes some manuevering on your docs part to get it right. This might be why you're not feeling right yet. I looked for feeling hot and found the following:

    Heat intolerance often produces a feeling of being overheated and can produce heavy sweating. Heat intolerance usually comes on slowly and persists long-term.
    Common Causes:
    · Thyrotoxicosis (excess thyroid hormone, which increases the basal metabolic rate, causing body temperature to rise)
    · Amphetamines such as appetite suppressants
    · Caffeine
    · Menopause

    Alternative Names:
    Thyrotoxicosis; Overactive thyroid
    Causes, incidence, and risk factors:
    The thyroid gland is located in the neck. It produces several hormones which control the way that every cell in the body uses energy (metabolism). The thyroid is part of the endocrine system.
    Hyperthyroidism or thyrotoxicosis occurs when the thyroid releases too many of its hormones over a short (acute) or long (chronic) period of time. Many diseases and conditions can cause this problem, including:
    · Graves' disease
    · Non-cancerous growths of the thyroid gland or pituitary gland
    · Tumors of the testes or ovaries
    · Inflammation (irritation and swelling) of the thyroid due to viral infections or other causes
    · Ingestion of excessive amounts of thyroid hormone
    · Ingestion of excessive iodine

    Probably not that much help, but anyway. I hope you can get this taken care of.

  6. pepper

    pepper New Member

    for the compliment. I needed that today!

    I never really thought that this was female hormone related since it came on so suddenly with the onset of CFS. I didn't go through menopause for another 8 yrs.

    I went through menopause without a hitch but I think that is because I wouldn't have recognized the symptoms - insomnia (had that already), fatigue (duh!), mood swings (oh, yeah), irritability (just ask my DH), etc. etc.

    So I never mentioned it to my gynecologist. My estrogen levels were fine a few years ago but perhaps I should get them checked again.

    Good idea.
    Thank you.
  7. pepper

    pepper New Member

    you sound as miserably hot as I am. I use the cold cloth thing and ice packs too.

    My feet are usually cool though. I couldn't put the ice cold towel on them. But it may be an idea for the hot summer time. I have been wearing light summer nightgowns all year long for years.

    I am sitting here in front of an open window (about 0 degrees outside) and I feel like I am burning up. The heat seems to come over me in waves and I feel that I must be very red in the face and I must be sweating. But I am not.

    I am sorry that you are suffering with this so much. The hard thing about being hot versus being cold all the time is that you can only take off so much! After that we just have to suffer.

    Thanks for your input.

  8. pepper

    pepper New Member

    I just saw my endocrinologist last week and she adjusted my thyroid meds. I have other issues going on such as abnormal blood work (sugar, cholesterol, thyroid) and we spent the whole appointment discussing those things.

    I think you and Kellyann have convinced me that I need to see her to have all my hormone levels checked. I told her that I was hot all the time but maybe I need to emphasize how miserable I am.

    Thanks for the suggestion. I am going to call her on Monday.
  9. pepper

    pepper New Member

    I have heard how hot London can get. My friend with CFS/FM has been there in the summertime and she loved the weather. She is the exact opposite of us and 40 degrees Celsius is her perfect temperature. And there is no central AC! That's awful.

    I too feel that my hands and feet are swollen. They do swell in the extreme heat and humidity but feel even worse than they look.

    I hate the thought of another summer spent doing nothing because of the heat, don't you? Even if I have any energy, doing anything heats me up so badly that I have to stop. There has to be something that will help us with this problem!

    If your endocrinologist has any ideas, I would sure appreciate hearing them.

    Thanks so much.

  10. pepper

    pepper New Member

    for this information. It is confusing because I am hypothyroid and being hot all the time is associated with hyperthyroid. I had forgotten that until I read your post.

    I cannot stop the thyroid hormones because even my blood work shows low levels. And I need to lose weight and am hoping that the increased T3 and T4 will help me with that.

    The thing that is ringing bells for me is the possibility of an infection of some sort on the thyroid. I think that I had an infection at the beginning of this DD. Maybe it attacked my thyroid!

    I am starting natural treatments for stealth infections so I wonder if they might help with the thyroid too. I hadn't even considered that and must keep track of my symptoms.

    Thanks for your input.
  11. iggyangel

    iggyangel New Member

    Ive only had improvement of hot flashes from estrogen therapy. I use estradot patch in lowest form of estrogen. Im 41 and dx'd w/FM also, I like the patch cuz the risks are lessened a little and also the patch by passes the liver which I take enough meds that my liver has to deal with. This has saved me! I use to just drip sweating! I live in Arizona too! Its a nightmare.
  12. zion1971

    zion1971 New Member


    i believe that this is actually a symptom of CFIDS. I too am hot ALL the time. I live in SC where we have at least 3 distinct seasons. I am sick during the humid summers. The winter is better because I can sit outside in the cold or at least open a window to get relief. I did not have this symptom before CFIDS. In fact, I was known for wearing my sweater and coats indoors because I was so cold all of the time.

    By the way all of this started for me when I was 27 years old. Menopause was not my problem.
  13. pepper

    pepper New Member

    I see that you are too young to be in menopause. Were your estrogen levels low? Or did you try the patch to manage your symptoms?

    That is interesting.
  14. pepper

    pepper New Member

    I was like you before getting hit with CFIDS - freezing cold all winter. Winter up here in the frozen north was not fun for me. I always wore several layers of clothes and avoided yard duty whenever I could!

    I was 44 when I was hit with CFIDS and even though it was January, I became HOT all the time from the day I suddenly became sick. I did not go through menopause until I was 52.

    I am wondering if my thyroid just suddenly went crazy. Or, because all hormones are interconnected, did they all go out of whack at once, including the estrogen?

    Isn't it strange that people who were so cold all the time would suddenly become so hot? My CFIDS friend who is just the opposite (LOVES our hot summers) used to be a ski bunny and went skiing for her winter vacation. Now she goes to the Caribbean. I would like to spend the summer in Alaska. Seriously. I'm sure you can relate.

    [This Message was Edited on 03/25/2006]
  15. damz68

    damz68 New Member

    because of burning, periferal neuropathy. Sometimes the burning is so bad I can feel like I am running a fever yet it will be 97.8.

    Zion I live in SC too, upstate. Did you ever find a good counselor? I will be seeing one in a couple weeks.
  16. iggyangel

    iggyangel New Member

    I tried natural therapies at first but it did not help. this was the last resort for me. My illness put me in menopause early which is common for implant illness. I do believe that there are other factors for our constant heat problems and they differ from person to person. I have even read some theories that it may be to cell malfunction, instead of producing energy they create heat. very interesting.
    Thanks, Iggy
  17. pepper

    pepper New Member

    I feel like I have a fever too but my temp is almost always 96.8. With a low temp like that, you'd think that I would feel cold, wouldn't you?

    I just checked out peripheral neuropathy and I am wondering if it could be connected to Lyme disease. I think I remember reading that in my research.

    Do you know?

    Thank you.
  18. pepper

    pepper New Member

    that "it may be to cell malfunction, instead of producing energy they create heat." I am going to bring this up with my CFS doctor when I see him since he is studying this.

    So many avenues to follow: thyroid med adjustment, estrogen, all those things mentioned by lena (maybe even a chronic thyroid infection), other hormones unbalanced or this. Nothing with these DD's is simple, is it?

    Thank you for the input.
  19. damz68

    damz68 New Member

    is very connected to lyme disease. If you go to and look up PN in there dictionary it will give a list of all the illnesses that cause it.
  20. pepper

    pepper New Member

    I will do that. I have just started a natural treatment for Lyme and other infections since my liver cannot tolerate ABX. I wonder if this heat thing will go away if the infection is taken care of.

    I am going to check out that website.

    Thank you!
    [This Message was Edited on 03/25/2006]

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