Poohbear Posted January 6, 2014 Report Share Posted January 6, 2014 It's been a while since I've been on the forum so....hello again!!I am in one of the state's that is dealing with extreme cold--as I type this it's currently -18 with wind chill of -47. It's been an exceptionally cold fall/winter.About 3 weeks ago I started getting episodes, mostly at night but they can happen in the day time too and seem to be worsening as the weather gets colder,. I will suddenly feel hot and at first I thought I was having hot flashes and going into menopause but now I'm pretty sure that's not the case. I will get wave after wave of this--like every 5-15 minutes and it sometimes lasts for hours. I peel off one layer and then 5 minutes later I'm shivering cold. I don't really sweat but sometimes my skin will feel warm to the touch. Eventually, I checked my temperature during one of these episodes thinking maybe I was coming down with a virus and was running a fever. I was SHOCKED when the thermometer read, 95.4. I thought it was a bad battery so I went and go the other two thermometers that I have in the house and they all registered within 2/10th to 3/10th of each other. I started tracking it and realize that when I get that hot sensation it's when my body temperature is dropping. I adjusted my thermostat so that the temp would be more stable day and night (prior to that I had it dropping about 8 degrees at night) which has helped a little but still not preventing these drops. I spoke to a nurse today who said I'm close to officially being mild hypothermia (95 is the official # for diagnosis). I dress in layers, I have the heat running but it has trouble keeping up in this extreme cold, I have quality wool socks on my feet, and plenty of warm blankets. I also have heat packs I can put in the microwave or other similar products that heat up. It seems the best thing to bring my body temperature up is a hot bath but once I'm out of the tub I get symptomatic within an hour if not sooner. The nurse made me promise to go into the ER if my temp falls 95 or below even if it's just briefly but so far I haven't quite reached that. It's crazy that when my body temp drops that I FEEL like I'm burning up and want to peel off all my clothes!Any suggestions? Anyone else dealt with this low of a body temp staying indoors?I'd feel silly going into the ER. I mean...I AM miserable but all things considered I'm reasonably stable given the circumstances and I'd hate to go in if all they did was say 'there's nothing we can do...go home and try to stay warm'. It's so cold right now that I'm afraid I would just get worse having to leave the house for the drive from here to the hospital. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted January 6, 2014 Report Share Posted January 6, 2014 As long as it doesn't drop any lower I would stay he if o were you. Just stay layered up and turn up the heat. As far as the flushing and warmth with cold weather and then feeling shivery after I have been getting that as well. What's your natural body temp mine is usually high 96s or 97.1 but temp as been as low as 95.5 on really bad days. Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 6, 2014 Report Share Posted January 6, 2014 I think they say that's one of the things that happens with hypothermia, don't they? That people feel like they are warm and start shedding clothes even tho they are literally freezing to death out in a snowstorm?They probably have things they can do to help warm you up in the ER, but not sure how long the effects would last if they don't do something to address the underlying cause of the hypothermia. Since it's been going on for several weeks, doesn't sound like something where they can just warm you up and then your body will take over like it should. Would be nice if that happened though, wouldn't it?Hope it resolves soon! Quote Link to comment Share on other sites More sharing options...
Poohbear Posted January 6, 2014 Author Report Share Posted January 6, 2014 I think they say that's one of the things that happens with hypothermia, don't they? That people feel like they are warm and start shedding clothes even tho they are literally freezing to death out in a snowstorm?That is correct and that's why the nurse I spoke to was so concerned. I think, now that I know what is happening I can change enough things to handle this better BUT the extra extreme cold we are having right now is life threatening cold to everyone. It's when my temp falls into the mid to low 95's that it's the worst. Trying to hang in there but this is tough. I'm used to dealing with heat and the problems with that but this is end of the spectrum is new territory to me. I mean, I've lived in the far North for almost 4 years now but this is the coldest winter we've had so far where MOST days our wind chill averages -10 to -25 ALL the time and it's been like that since before Thanksgiving. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 6, 2014 Report Share Posted January 6, 2014 Have you checked your temperature any other way? If I was reading that low, I would want to. In my "flares" I get hot and my face especially gets hot, but my temps read low for me. I have always been right on the normal of 98.6, but I regularly read a little low now. Between 97 and 97.5. I do not know what that means if anything. Quote Link to comment Share on other sites More sharing options...
yogini Posted January 6, 2014 Report Share Posted January 6, 2014 (edited) Hope you are feeling better today. I can't imagine having your body temp so low. People get cold when they have a fever, so maybe feeling warm is the opposite effect when your body temp is low. Can you make it to the dr during the day? That might be better than the ER. Edited January 6, 2014 by yogini Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 6, 2014 Report Share Posted January 6, 2014 I had my thyroid out a few years ago, and this fall the doctor made me lower my dosage because my labs were not "normal" and showed hyperthyroid(via low TSH only, free T4 normal). I had to go to the lower dose, and I felt awful. But anyway, I felt hypothyroid no matter what the labs said. As I got even lower this fall, and we would get our cold weather in November, I would be cold to the bone. I am NEVER cold, even in previous winters. I would take my temp and saw some of the lowest readings I've ever had, and some were in the 95.something range.I since found a doctor who brought my thyroid med dosage back up, and now I'm not cold anymore, and my temps are back into the 97-98 range.So, my point is, is your thyroid okay? Quote Link to comment Share on other sites More sharing options...
Poohbear Posted January 6, 2014 Author Report Share Posted January 6, 2014 Thanks everyone!gjenson, yes, I have checked my temp several ways and I'm getting pretty consistent readings among all sources.yogini, thanks for your support! Today is no better but the outside temps are worse today--this morning was -23 with wind chill -54 and even now (our warmest time of the day) is -14 with wind chill -42. My Dr doesn't want to see me and honestly, I think just stepping outside, regardless of how bundled up I would be, would probably make this worse at this point. sue, your points about thyroid are interesting. I have hashimotos and my Dr reduced my dosage a few months ago (long story, but I had to switch brands at it caused a lot of problems)--when she lowered my dose my TSH went up and was abnormal high. So about 6 weeks ago she changed my dosage again. I go back this week to recheck but honestly, I expect it to be back to my normal at this recheck. It's hard to know what causes what sometimes. I have had more sensitivity to the cold this winter than in years past but these are also the coldest temps we've seen in about 17 years. I think, my current problem is primarily an unhappy ANS but perhaps the thyroid is adding or worsening the problem. I'm sure you guys understand---it's frustrating to feel so horrible (and scary sometimes too...especially when you live alone) and do everything you know to do with little success. I am exhausted because I have slept very little in 4 nights dealing with all of this and then you deal with red tape and politics of Dr's offices and nurses who don't relay the correct message to the Dr and on and on it goes with a buildup of frustration. I've been crying most of today which makes my self esteem plummet (I feel after these many years I should handle all of this better). I'm just tired of the constant hurdles and discomfort and the lack of caring from many 'professionals'. Although one or two specialists have been GREAT but it's not an option for me to see them right now (they are in a different state). Anyway....it's nice to know at least people here understand! Quote Link to comment Share on other sites More sharing options...
corina Posted January 6, 2014 Report Share Posted January 6, 2014 Hi Poohbear, nice to hear from you, though sorry you have reason to! I just wanted to add that when it doesn't seem to be thyroid related you might want to think about trying mestinon. I have been so so so cold in the past, not being able to get and stay warm at all (by myself). Mestinon changed that for me, it kept my temp up until wearing off (it lasted 3 to 4 hours). Just in case it might be helpful okay?! Take care, I hope temps will go up soon for all of you living overseas! Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted January 6, 2014 Report Share Posted January 6, 2014 Sue I just went to hospital and my tsh was low hoping it is what is causing most of my issues and it can be treated Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 7, 2014 Report Share Posted January 7, 2014 I am having such a problem this past year in getting my thyroid numbers to "settle down". I've been on the same dose for like 3 years with normal labs, and all of the sudden last year my TSH goes really low, even though the free T4 and T3 stay in range. A year ago I felt the best I've felt in years and my POTS had improved by about 60%(I made a post about it last spring). At that time my TSH was like 0.03 and my FT4 was 1 point over range. Then I had to lower my dose in the spring, and again in the fall. I felt like a ZOMBIE by October, even though my TSH was still saying I was hyper! With no thyroid anymore, I was almost down to taking a "starting" dose for people beginning thyroid therapy...I was at 88 mcg. and I bet they were going to have me go down to almost 50 mcg. Most people get situated on a dose around 125 mcg.I kind of wondered if I might have a pituitary issue. Only, I could not afford to go lower in dose to see if my TSH came up alot or stayed pretty much the same. I just know that the FT4 more reflects how I feel. Anyone else with thyroid issues have whacky numbers that don't seem to fit how you feel? Quote Link to comment Share on other sites More sharing options...
spinner Posted January 7, 2014 Report Share Posted January 7, 2014 I've been dealing with this for a long time, my physician is Dr. Shields at Cleve Clinic. in neurology.A couple thoughts but not advice of course.What are your thyroid numbers? Have you been tested for lupus? Have you had a heat stroke before?Do you have inflammation???? A c reactive protein test? Tested for ganglionic antibodies?Just throwing out some things they "look" for, thyroid, blood vessel contraction issues, inflammation and autoimmune, hormones various with ageing, the ability to sweat (also called anhidrosis), but ive read a lot about LOW BODY TEMP (which i have) related to thyroid but still feeling hot. You've got a lotof homework to do. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted January 7, 2014 Report Share Posted January 7, 2014 Hope your doing better today poohbear, sue hope your numbers improve. Quote Link to comment Share on other sites More sharing options...
Poohbear Posted January 7, 2014 Author Report Share Posted January 7, 2014 Thanks Rosey! We still have at least two more days of the 'extra' extreme cold but by Friday we will at least reach 20 so that should help. I'm thankful that at least my furnace is still working!! Quote Link to comment Share on other sites More sharing options...
Poohbear Posted January 9, 2014 Author Report Share Posted January 9, 2014 Arrrggh!!! I feel like a nut, FINALLY today we had some temperatures and wind chill that is above 0 (not by much but certainly improvement over -25 with wind chills down to -50!I went back to the Dr to have my labs checked today and learned that my TSH is now too low (6 weeks ago it was too high). We didn't make that big of a change in my medication last time so I don't understand why there is such a big difference in my levels. I also can't tell what is causing what. It certainly felt like it was my dysautonomia that was causing the wild and rapid shifts in body temperature during this extreme cold that was causing mild hypothermia. Now that we aren't in the extreme brutal cold I'm having an easier time staying out of hypothermia but I still get these 'hot flashes' (which after having my TSH results back today I'm thinking the thyroid has some role in all of this). So...in the end I think I'm dealing with 2 separate problems that overlap---the intermittent hypothermia that makes me feel hot when my temp drops mid to low 95's and then hot flashes in general that are being caused by the thyroid???I'm frustrated with all of this. I was on a thyroid replacement that worked well for me for many years but it was recalled this spring. Ever since I had to switch brands/manufacturer's it's been constant problems. I just don't know what else to do but I am so tired of this 'trial and error' with new dosages and mfg and tired of feeling AWFUL. Has anyone else here had similar issues? What worked for you?Thanks for sharing, listening and letting me vent Quote Link to comment Share on other sites More sharing options...
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