wibbleway Posted September 11, 2009 Report Share Posted September 11, 2009 Hello Again,I need some advice and help. The past several days, I have been more symptomatic than normal. Today when I stand, I get so cold that I took my temperature and it was 95.5. When I lie down and bundle up, things get warmer with the exception of my feet. But the extreme cold makes me nauseated also. Has anyone else experienced this low of a body temperature and if so why is it happening?Thank you all!Cathy Quote Link to comment Share on other sites More sharing options...
Tammy Posted September 11, 2009 Report Share Posted September 11, 2009 I'm not sure how cool your environment is, but in the winters here, I have to be so careful not to get too cold or else my body temp also drops and I get almost stiff or at least feel like I can't move my body. I was at a Christmas party last year with my husband's family and I was there for 3 hours (too long for me) and the room was about 65 degrees. When we got home my husband took my temp and it was 94 degrees and my extermities where 67 degrees. Felt like a fish! Quote Link to comment Share on other sites More sharing options...
wibbleway Posted September 11, 2009 Author Report Share Posted September 11, 2009 I'm not sure how cool your environment is, but in the winters here, I have to be so careful not to get too cold or else my body temp also drops and I get almost stiff or at least feel like I can't move my body. I was at a Christmas party last year with my husband's family and I was there for 3 hours (too long for me) and the room was about 65 degrees. When we got home my husband took my temp and it was 94 degrees and my extermities where 67 degrees. Felt like a fish!I know how you felt. We are in the South and our house is 70 degrees inside. As long as I am laying down and under a quilt my arms and body temperature gets warmer. It is when I stand up that it drops so low and chill bumps break out all over. I've never had it do that before so it worried me. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 11, 2009 Report Share Posted September 11, 2009 Have you had your thyroid levels checked? You could be hypothyroid, which would cause your metabolism to slow down. Quote Link to comment Share on other sites More sharing options...
wibbleway Posted September 11, 2009 Author Report Share Posted September 11, 2009 Sue,I already have hypothyroidism and on medication for that. It is just so strange that it is happening only when I stand. I normally have the drop in blood pressure,etc., but never have noticed the temperature before like this. Thank you for your help.Cathy Quote Link to comment Share on other sites More sharing options...
corina Posted September 11, 2009 Report Share Posted September 11, 2009 cathy, i have always been very very cold because of pots. when i started mestinon that for me was a BIG help. it didn't cure the pots but it helped tremendously with controlling my bodytemperature. whenever i forget to take the meds i start getting cold again. i used to dress myself as warm as possible and take a hot bath at noon every day followed a a nap. for me that was the only way to stay warm. it is so much easier to just take the mestinon and stay warm!!! when you consider to give it a try, do talk it over with your doc though!best of luck!corina Quote Link to comment Share on other sites More sharing options...
wibbleway Posted September 11, 2009 Author Report Share Posted September 11, 2009 cathy, i have always been very very cold because of pots. when i started mestinon that for me was a BIG help. it didn't cure the pots but it helped tremendously with controlling my bodytemperature. whenever i forget to take the meds i start getting cold again. i used to dress myself as warm as possible and take a hot bath at noon every day followed a a nap. for me that was the only way to stay warm. it is so much easier to just take the mestinon and stay warm!!! when you consider to give it a try, do talk it over with your doc though!best of luck!corina Did you ever take your temperature to see what it was when you were so cold?Cathy Quote Link to comment Share on other sites More sharing options...
corina Posted September 11, 2009 Report Share Posted September 11, 2009 no, i don't think so. but i remember that i told my doc that i thought i was "dead"cold. my inside was as cold as my outside and i couldn't get warm by myself. my neuro prescribed the mestinon. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 11, 2009 Report Share Posted September 11, 2009 Cathy,I am one of those 'always cold' people. My body temp normally runs about 96 to 97 degrees. One of the autonomic functions of our bodies is to regulate temperature, so it's probably not too unusual for your temp to be that low, especially if you tend to be more symptomatic when you're standing, like most of us. Even in a 78 degree room my feet, hands and nose are cold!Good luck and keep warm,Jana Quote Link to comment Share on other sites More sharing options...
wibbleway Posted September 11, 2009 Author Report Share Posted September 11, 2009 Jana,Thank you so much. And thank you for everyone's input. This disease has so many facets that it is wonderful to have others to talk things over with.Cathy Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted September 11, 2009 Report Share Posted September 11, 2009 Cathy,I'M KNOWN as little ice packs as my hands, feet and nose are freezing when I get cold... I do have raynaud's and hypo thyriod. The raynaud's is made worse by the meds, especially when they tried BB's on me... I have to take special meds just for the raynauds which makes me extra tachy and even then I'm still not getting full good circulation... At this time we are unable to go any higher on the Raynauds meds as I'm taking the most possible. It's a calacium channel blocker that works against the other meds for my pots... So it makes it difficult to balance everything out.So good luck to you.... when I go into the doctors office they often have to shut down the ac just so I don't freeze.... Today my feet have been so cold all day and I'm thinking look out winter.....where are my Uggs and it's only September?(((((((warm hugs))))))))))BellaMia~ Quote Link to comment Share on other sites More sharing options...
jump Posted September 11, 2009 Report Share Posted September 11, 2009 hi,I have POTS and hypothyroid disease, and I am always, always cold. But sometimes I am more cold than others; there's no question that when I am more POTS symptomatic, I am usually either more cold or I spike a small fever. Standing also makes me cold. I think the coldest temperature I've ever had was 94.5, and I considered going to the ER (although I didn't). You might want to look on-line or call your doctor and ask how low merits an ER visit, just to be safe.Even though I know my temperature is somehow related to my POTS (I've had hypothyroid disease for over ten years, but this really low body temp thing only came on when I developed POTS symptoms, about five years ago), I do think thyroid plays a part. For example, for the past six months or so, my body temp was routinely 96.5. I assumed this was just POTS, but then it turned out my thyroid levels were just an eensy bit off. Two weeks ago I tweaked my medication, and now my body temp is usually 97.9 - a BIG improvement. So I wouldn't rule out getting your TSH checked, even if you think it's ok.Other than that I have no real advice - I usually just take scalding hot baths, drink a little red wine, and wear ridiculous amounts of clothing until I warm up. I have heat packs for my feet, but they're usually always cold anyway. I have several pairs of fingerless mittens that I wear constantly from September to June. And LOTS of ski socks. Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted September 11, 2009 Report Share Posted September 11, 2009 I'm usually about 96.8 instead of 98.6. Weird. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted September 12, 2009 Report Share Posted September 12, 2009 My body temp usually runs low, 95.2 (my lowest documented) to 98.6 or so. I am the only person I know to have had pneumonia without any fever at all. I am always cold except for the warmest summer days. I always sleep with socks on, no matter how hot it may be my extremities are always cold. My heated mattress pad Mom gave me for christmas last year is an absolute Godsend. My "normal" temp seems to be around 97.8. Sandy Quote Link to comment Share on other sites More sharing options...
skyblu Posted September 12, 2009 Report Share Posted September 12, 2009 Yes. .my temp is often 95.5 in the winter or if I'm feeling cold. It's been as low as 94.5. And as usual.... I can't get an answer from any of my docs as to why it's so low. When I'm sick I'm still able to run a fever. I figure it's just another one of those weird body things that goes along with having dysautonomia. Quote Link to comment Share on other sites More sharing options...
erik Posted September 12, 2009 Report Share Posted September 12, 2009 Some of those are pretty far from normal... you all should see a doctor about that :)I've read stories about hypothyroid being noticeable in temperature variations... more subtle ones. Also, if the body feels cold it is "supposed to" increase thyroid activity, which may or may not happen or if the thermostat is set low perhaps an hypothyroid condition can result?These sites have some cool stuff on ANS and hypothalmus (and other stuff too). So many intricate parts & interactions and more than a few spots where things might be dysregulated in some way:http://thalamus.wustl.edu/course/hypoANS.htmlhttp://www3.fhs.usyd.edu.au/bio/homeostasi...BodyTC_Pg02.htmI don't think my temp is too far off but haven't checked in normal circumstances. When I get tremulous (almost all mornings now) I have wondered if my body "thinks" it is cold or something... or vice versa, I am cold but don't feel/know it. Quote Link to comment Share on other sites More sharing options...
Whitewolf Posted September 12, 2009 Report Share Posted September 12, 2009 when i start my monthly cycle i start freezing alot but normally i tolerate the cold everyone else calls me ice cream i am good as long as it is cold but when my body starts to warm up my pots acts up horribbly but when i am on my cycle my body temp jumps around like crazy like right now i would normally be sweating but i am freezing so i dont know if i am normal for a pots person or abnormal for a pots person but dont know if it helps PS temp is 97.7 now not sure what it is normally sorry Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted September 12, 2009 Report Share Posted September 12, 2009 Hi,I had a much more pronouced episode of this when I tried Melatonin for sleep. Have you recently tried something new med-wise?Also, I believe that feeling extremely cold can come with iron deficiency. Have you been tested? Check the symptoms through google to see if it fits at all. As I became more iron deficient (kinda dangerously low) I started to have some of the weirdest side effects and cravings. I have never ate much in the way of cereal. All of a sudden I am buying six boxes of it, AND eating it with milk. I always used to not tolerate it in a lactose intolerant way, so it was very weird. I also was craving ice cream, frozen yogurt etc. like crazy. Serious chocolate cravings.... Eating and craving ice to the point it was painful to be without ice. Not sure if any of that helps? Otherwise I would say it is possible you may need to check your thyroid #'s, because you may need a med adjustment. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted September 16, 2009 Report Share Posted September 16, 2009 I don't know what I would do without my heated mattress pad also... My doc says it's my disregulation of body temp. I went through a period of low grade fevers up to 100, that's how I got the chronic faigue dx. from an infectious disease doc. I run low now and towards the end of the day I can spike up a bit low grade at times...If it gets over 100 I have to look back into the issue... Quote Link to comment Share on other sites More sharing options...
wibbleway Posted September 16, 2009 Author Report Share Posted September 16, 2009 Thank you all for your experiences and helps. I will keep you informed. I am going to the doctor tomorrow and will have him check my thyroid level again. Cathy Quote Link to comment Share on other sites More sharing options...
janiedelite Posted September 16, 2009 Report Share Posted September 16, 2009 I'm usually about 96.8 instead of 98.6. Weird.Me too. Except when I'm having adrenaline surges (flushing, high BP, migraine) then it goes up to 99's. Quote Link to comment Share on other sites More sharing options...
Rafiki Posted September 17, 2009 Report Share Posted September 17, 2009 My body temp normal runs 96.8 too and I'm frequently cold. As my son told me tonight as we walked outdoors into about 75 degree temp. and I said I was freezing "You are just a freak of nature!" (He said it lovingly!). I was cold long before disautonomia kicked in though. Debbie Quote Link to comment Share on other sites More sharing options...
erik Posted September 17, 2009 Report Share Posted September 17, 2009 Sounds like a Autonomic Dyslexia... very rare indeed Quote Link to comment Share on other sites More sharing options...
ladyt Posted September 17, 2009 Report Share Posted September 17, 2009 hi...i used to be so cold always... others would be in bikinis and i under layers of wool... When i started gutron (midodrin), i got a bitt better... Now it varies a lot, often during a day.. I try to keep an even bodytemp, but its not all that easy.. i have a heat blancket in bed (wounderfull), i find that varmweather botles and similar stuff work better than raising the temp in the room (as long as the room temp is warm already).. And there are this small heatpacs u can by and use in our shoes and mittens.. ( i use it in the winters when out somethimes).. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 19, 2009 Report Share Posted September 19, 2009 some of the systems implicated in POTS, such as nitric oxide, norepinephrine and brainstem regulators are also involved in thermo regulation. Quote Link to comment Share on other sites More sharing options...
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