Freezing

[vtmommy]

Happy Valentine's Day!

So, winter in Vermont this year isn't too bad since it's been pretty mild (30 degrees is mild for here) and we hardly have any snow.  We've had several days of below zero weather, but the house normally stays pretty warm.  I've had a lot of bouts of Raynaud's in my hands when they're exposed to cold, like holding a glass of cold water, but it usually subsides when I warm them up.

My most recent problem (recent being months) involves freezing when the temperature isn't cold.  I'll sit in front of my computer in my 74 degree office with fingerless gloves and a heated throw (courtesy of Costco...had to have it when I saw it) over my two layers of long-sleeved shirts and "Bearclaw" booted slippers and still be cold.  There are some days I need to wear my winter coat in the house in order to feel comfortable.  Other days, instead of using my heating pad on my aching back, I stick it on my feet to thaw them.

Is this just the (possible) Sjogren's causing it, or should I assume something else is going on?  I've had my thyroid checked many times (all normal) and two endocrinologists have assured me that my morning cortisol of 5 is completely normal (don't really buy this, but not like I can do anything about it right now).  Thoughts?

Thanks,  Susan

[A66eyroad]

I've heard it said on this forum many times that it seems as though our internal thermostats are broken (she said as she sat at her computer with an electric heater blowing full blast at her and drinking hot tea just to be holding something warm !  ).

[Joe S.]

It sounds like trouble with your triple warmer. I trigger the triple warmer to give others a hot flash experience.

Could be a form of autonomic dysfunction. A number of us face this challenge. It is best to discuss this with your doctor.

I have found that when I have cold feet, putting on a warm hat will warm my feet.

[MissyLouWho?]

Mine is related to bradycardia (low heart rate).  Have you had your heart checked?  I also have low bp which makes me cold when it drops too low.

[jazzlover]

I don't know what to tell you on that. But just popped in to say that I have a heated mouse for my computer and it really helps the Raynaud's on that hand. My right hand is the most troublesome.

[cargillwitch]

my Raynuads seems to be more severe since all the sjogrens stuff showed up.
I have had it for years ( 30?) and I can attest it is made worse by low BP and heart rate. I am a runner and when I was training particularly hard both my BP and resting heart rate can get crazy low- always makes the Raynauds worse.

[Luna]

I do not have Raynauds. Thank goodness. I know it is hard to live with. But I do get cold even when it is 70 in my house. I used to find that to be hot. Now I am freezing. I am finding all kinds of ways to get warm. my hands stay cold and so do my toes. I wear gloves and double socks. My friends think im nuts cause they are in light shirts. I dont know why im so cold, but wanted to just let you know your not alone. Shoot, I live in the south. So it is crazy for me to say im freezing. You up north must be freezing.. Oh and I do think vermont is beautiful. Never actually been there, just saw pictures.

Luna

[eyeamdry]

I think this is a regular thing among quite a few of us.  I can remember a couple of years ago when, for months, I lay (or Lie) on the sofa wrapped in an electric throw.  I still am freezing if our thermostat is set at 75.  Other times I get hot if it says 72.  Then I take off my sweater or sweatshirt or what I can.  An hour later, I may add more clothes.

My hands and feet are perpetually cold.  I don't know if I have Raynauds or not and will likely never figure out.  I wear gloves with half fingers cut out sometimes and always sox with slippers or a pair of leather ankle boots in the house.  I figure if I can keep my immediate problems to that..............I can deal with taking off and putting on clothes.  Weird how so many of us are like this.  Before SJS I do not remember having this problem.  Lucy

[anita]

Sounds like autonomic dysfunction.  However, it's usually does not appear alone.  There are many aspects and most with this dysfunction have at least a couple.  Some other autonomic dysfunctions are:  fluctuating heart rate & BP, slowing GI emptying, balance, temperature regulation, sweating problems, difficultly urinating, sexual dysfunction, and more rare are livedo reticularis and vasospasms.

Most university hospitals are autonomic testing available. 

[Seeker]

Howdy, vtmommy.  Have you had your Thyroid check?  The Thyroid can affect your bodies heating system.  If you do have it checked, make sure you have your T3 and T4 levels measured.  Not just the TSH (Thyroid Stimulation Hormone. ).  TSH levels can be deceptive.  The normal range is very subjective.

Seeker
 

[vtmommy]

Thanks for the feedback everyone.  I have a neurology appointment coming up and will definitely mention my temperature issues.  I've had light headedness upon standing and my blood pressure usually runs in the lower range of normal, but I haven't had any readings that were abnormal at the doctor's office.  Same with my pulse.  Resting rate is usually around 68-75.  I had my heart checked several years ago, but nothing recent.

Seeker, I've had my TSH, T3, T4 and thyroid antibodies checked multiple times.  The first 3 were fine, the thyroid antibodies were present, but not elevated.  I've heard some people say if both antibodies are present, then that's Hashimoto's, but the endos only do something if the titres are high... 

Thanks,

Susan

[Scottietottie]

Hi 

Keep getting those thyroid numbers checked - and take a note of the results. Some docs say TSH is normal when it is 3. Many people feel symptomatic at that end of normal. I feel ill if my TSH is more than 2, which a lot of docs consider mid range.

Lots of sjoggies reckon they have 'broken thermostats' but keeping an eye on thyroid numbers is a good thing to do too as one of the classic 'hypo' symptoms is feeling cold.

Take care - Scottie 

[Patze]

Hi vtmommy,

Oh yes, the see-saw/broken thermostat....whew, sure wish it would stabilize for more than a week or two!  Yep, can sit in 76 degrees and my fingers and toes would be the beautiful purple/blue/white thing going on (have Raynaud's).

I'm with Scottie, just because the endo says that the TSH is "within" normal limits, doesn't necessarily mean that its normal for the person.  What I mean is some folks are hypersensitive to any movement of their TSH.  And as she mentioned, keep a track of the numbers and how you're feeling to finally figure out what is normal for you (I do the best between 1.00-1.50.  Mine just shot up to 2.00 and I sure do feel it; ugh).

Hang in there and I hope that you find an answer soon!

Take care of yourself -

Patze