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BonusMom
02-26-2011, 10:24 PM
DH and I bought a newly constructed home last summer so I know it's not drafty and the heat works well, etc.

In our rental home, we would keep the thermostat at 64 in the winter to keep heating costs down and we'd all wear warm sweats and thick slippers. We'd keep a throw handy for TV watching and nobody had an issue with it.

Not this year. I've got the thermostat at 72, the thick sweats and slippers, with blankets. aren't even cutting it--my hands and feet are like blocks of ice. Oh, and don't forget my cold puppy nose. My fingernails are now milky white. I don't have any sores on my fingers, which I understand is common with advanced cases of Raynaud's.

I've had (mild) Raynaud's for a long time, but never have I been this cold.

I had thyroid testing done last week (TSH, T3/T4 Uptake and Free T4). All were WNL, according to the lab ranges. With the sudden hair loss and the other symptoms I've had, I'm absolutely convinced my thyroid is out of whack. My rheumy recently said my hair loss is probably due to another AI disease or a circulatory problem.

What else could be making it so hard to keep warm? Staying in bed or a hot bath all day isn't an option. BTW my oral temp runs 97.9.

Nonna
02-27-2011, 04:50 AM
It could still be your thyroid; have you seen an endocrenologist? Also if you have lower blood pressure with the bad cirrculation that could make you cold. I used to set the thermostat on 78; that and stay warm. Otherwise I'm under a blanket and I don't have Raynaud's. Once again I am an example not a fact.
Please see an endo if you haven't

hugs. Nonna

don't know wher the smilie came from..... Not me

fixed it

Bonita
02-27-2011, 07:16 AM
I have a problem with cold too. Even when it is warm outside i can still have purple fingers in my house. My husband does not understand any of this and in the summer i have to go outside to get warm because he has the air on at 68 and it is freezing. When i am not in a flare my temps run in the 97 degree ranges. Bonita

scubagramplit
02-27-2011, 10:34 AM
Have you been changing up on any of your meds? I had tappered down and gotten off of cymbalta and had problems with always being cold to the point of shaking violently trying to warm up. The doc started me back on cymbalta and now I do not have a problem getting cold. He said it was depresion possibly that was causing the problems, imagine any of us having a bit of depression, I also was losing weight and did not have an appetite and bouts of anxiety, bad. Hope this helps someway. Jim.

SandyR
02-28-2011, 07:41 AM
I have that problem too at times. Try warming your socks in the microwave for a minute or two or in the dryer. It helps sooooo much.

jmail
02-28-2011, 09:19 PM
lolol SandyR... I've even tied a "bed buddy" (bag of rice) around my waist before after heating it in the microwave. Right now, I'm wearing my "hoody" zipper sweatshirt, and still *freezing*!

But seriously BonusMom, I can't find the article now, but it's somewhere around here, where there's some talk that the "baseline" of a lot of those thyroid blood tests being "off the mark", so to speak. Some folks need more, some need less. In other words, there's no real "normal". The "best" way to diagnose thyroid issues is with the basal body temperature. Like Nonna suggests, see an endocrynologist, but one that tests that way also.

GoodDog
02-28-2011, 10:43 PM
When I get cold to the bone it helps to take a hot bath. Showers make me colder but a very warm bath seems to last awhile. Now all you need is to have someone draw you a bubble bath several times a day and light candles and put on soft music. Lupus would be easier to handle if we were rich and had butlers to do those things for us. LOL

SandyR
03-01-2011, 07:56 AM
lolol SandyR... I've even tied a "bed buddy" (bag of rice) around my waist before after heating it in the microwave. Right now, I'm wearing my "hoody" zipper sweatshirt, and still *freezing*!

But seriously BonusMom, I can't find the article now, but it's somewhere around here, where there's some talk that the "baseline" of a lot of those thyroid blood tests being "off the mark", so to speak. Some folks need more, some need less. In other words, there's no real "normal". The "best" way to diagnose thyroid issues is with the basal body temperature. Like Nonna suggests, see an endocrynologist, but one that tests that way also.

hmmmm....a bag of rice, huh? I do think that's on sale at my local grocer right now. Perhaps I'll get the 10lb bag and have a good warm snuggle with it. I was just thinking this weekend that I wish they made snuggies and blankets with the UGG material. When I wear my uggs I feel much warmer. Our Aussie friends can correct me if I'm wrong but I had read a while back that Uggs were originally meant to be warm house slippers.

I think the thread you are referring to is one I posted a while back - Nonna, you know the one b/c you were the one to point out that the range isn't set in stone for everyone. I can't even remember the name of my own thread right now, but I remember that Nonna taught me something new on it. It's in the symptoms page. I think.

BonusMom
03-01-2011, 02:02 PM
I've read and re-read your awesome thread on thyroid stuff and gone to your links, Sandy. Thanks for posting the info., it's been very helpful. Both the primary doc and my GI nurse practitioner have said that the thyroid labs look good, although I posted the info on one of the sites you mention, Sandy, and I was told that the free T4 was low. How does one get a referral to an endocrinologist if their labs look "normal" to the gatekeeper i.e. their PCP?

SandyR
03-01-2011, 02:11 PM
are you sure you need a referral? I know I have an open-gated plan (PPO) an can just go see who I want when I want without a referral. I pay more for this luxury but to me it's worth not having to jump through hoops to see a specialist. If you do and the PCP won't write you a referral even after you ask I would call the OBGYN and ask them to refer you or call the insurance company and explain that you have Lupus and a thyroid issue and are concerned about your thyroid but your PCP won't listen to you after you requested to be checked out by an endo. If your insurance company has a patient nurse coordinator line that would be where I would call first. Also, have you been given a copy of these good looking labs? Have they explained exactly which tests they ran? Have you seen what the labs say personally? I've had labs come back "normal" that were really within a point or two of "abnormal" and would be considered in the extrmely high or low end of the normal range. If that describes you then you might want to ask them to re-run the labs to see if there is a change.

what is "normal" anyway? it just references the set of people who fall within the parameters of certain criteria for any given measure. Just because we might show up as normal doesn't mean we are the same and I wish the drs understood this. By definition of the way AI diseases work normal is abnormal for us and we shouldn't be discounted because our numbers look good. I wish I could get my doctors to understand that all normal is in a blood test is a range of averages. It's like a physics test. I might pass it and fall in the "good" range but that doesn't mean the results relfected my true capabilities to perform as well the next time. I might have just had a good day.

OHMEOHMY
03-01-2011, 02:40 PM
hey there, i have this problem, too! AND, as in another post, a problem in that i get SO hot! i had a hysterectomy when i was 24, and i am now 52, and have already been through the 'hot flash' thing. this is similar, but not the same.
the freezing cold thing is a new one for me.
thyroid, or para-thyroid, is a good suggestion. perhaps we'd both do well to check that out.
as for me, and probably you also, i'm sick of it.....
who needs ANOTHER problem???
good luck to you, i hope your dr.s are better than mine, and that if you get any answers, you'll share (please).

Saysusie
03-02-2011, 09:13 AM
Being cold is a constant aggravation for me..so much so that I still use my electric blanket in the summertime (and we get temperatures in the 100s during the summer). When sitting and watching TV, I keep my feet tucked inside of a heating pad (with 2 pairs of socks). I have a portable heater that follows me around the house because I need to be directly in front of it wherever I am (yes, while having my feet in the heating pad at the same time).
It is miserable to always be cold. Not to mention how uncomfortable it is for the people around me because when they are sweltering, I am finally comfortable!
Have you asked your doctors about your thyroid? I had mine removed due to cancer and this could be aggravating my sensitivity to cold. It is, at least, something that you should consider and ask about.
I wish you the very best.

Peace and Blessings
Namaste
Saysusie

BonusMom
03-03-2011, 05:14 PM
My GI's nurse practitioner agreed to run the full gamut of thyroid tests so I'll have them done tomorrow.

My labs drawn last week show that my zinc levels are low, which is common in hypothyroid patients. My PCP believes the low zinc level is the cause of my hair loss. I am to start taking 110 mg of zinc sulfate 3x daily and we'll re-test in a month.

I also have a PPO as my primary insurance, Sandy, with an HMO as my secondary carrier. I want my PCP on board with me and prefer him to refer me to an endocrinologist. The low zinc is yet another tool in my arsenal to convince my PCP in to referring me to an endo vs writing me off based on my TSH being WNL. I will, however, self-refer if he's stubborn about it. I can be stubborn, too, and my instincts are telling me IT'S MY THYROID!!!!!!

SandyR
03-03-2011, 08:40 PM
Momma always said if you can't trust in anything else, trust your instincts and trust God. *smiley face*

BonusMom
03-03-2011, 10:56 PM
Amen! At least neither of those will ever lie to me or lead me astray....

Nonna
03-04-2011, 02:29 AM
How about if you tell your PCP that you are worried that since you have Lupus and you have symptoms of hypothyroidism. You are veryworried that a form may be starting to attack your glands. Ask him to also check your calicium and vitamin D levels for hypocalceimia. These signs also come from lupus or Hashimotos (which is the name for AI disease whenit attacks the glands). Ask him please just for your peace of mind would he please give you a referral, tell him you trust him but understand that he can not be expected to know everything about everything. I know how hard things can get with insurance companies. You'll just have to deal otherwise until your blood level adjust to you symptoms.

Hugs nonna

rob
03-04-2011, 05:17 AM
I have the opposite problem-I'm always way too warm. I get overheated easily and then I can't cool down. Sometimes my hands and feet feel like they are on fire. My neurologist says it's an MS thing, not a Lupus thing. It's one of the primary reasons I left the desert southwest for a cooler climate.

SandyR
03-04-2011, 07:31 AM
I have the opposite problem-I'm always way too warm. I get overheated easily and then I can't cool down. Sometimes my hands and feet feel like they are on fire. My neurologist says it's an MS thing, not a Lupus thing. It's one of the primary reasons I left the desert southwest for a cooler climate.

Rob - you stand still and the rest of us will gather round you and bask in the heat. Everybody wins. *laughing smiley face*

GoodDog
03-04-2011, 02:56 PM
I think my internal thermostat is broken because I'm either too cold or too hot most of the time. My comfort zone is almost nonexistent.

BonusMom
03-05-2011, 09:02 PM
My thermostat's been broken for quite a while, Good Dog. In the summer, I don't sweat so I overheat and pass out. This winter has been the worst as far as the coldness goes so it'll be interesting to see what summer brings.

magistramarla
03-05-2011, 09:34 PM
My thermostat is also broken.
I'm freezing every night when I go to bed. I've started wearing fuzzy socks to bed - to Jeff's great amusement, since I can't stand to sleep with a stitch of clothing on!
Between 2 - 2:30 am every night, I wake up drenched in sweat. Off come the socks and the covers. I sleep for an hour or so, then wake up too chilly and pull the covers back on. I alternate this way until I get up. I don't know whether to blame the AI diseases, peri-menopause, or the blasted tempur-pedic foam that Jeff so loves on the mattress for his back.
I've noticed that I don't get over-heated on "normal" hotel mattresses.
Hugs,
Marla

BonusMom
03-05-2011, 10:39 PM
Too funny, M, because I'm an in the buff kinda sleeper, too, except when it comes to the tootsies and I also wear fuzzy socks (that our daughter bought me for Christmas).

I posted on Sjogren's World about the Tempurpedic Mattress Pads because I was thinking about buying one. Your complaint about them being so warm seems to be the concensus, the gel traps in the heat. I've decided against buying one for that very reason.

The weird thing is that we turn off our heater when we go to sleep, otherwise we wake up with headaches from the heat. On our bed, we only have a sheet and a down comforter that's rated for warmer temps, with a lightweight duvet, and we stay plenty warm enough (except my feet, of course).

Now, if I'm watching TV, I am wearing sweats, a long-sleeved thermal, a bathrobe, long socks, slippers that go up the calves and gloves (if not using my Blackberry). I'm sitting in my favorite leather chair with my feet propped up on the ottoman. Throw a nice comforter over the top and crank the thermostat to 72 and it's all good. Oh, and bring me a nice hot Butterfinger (Butterscotch Schnapps and hot chocolate with a healthy dose of whipped cream on top), and I'm a happy camper.

One thing's for sure.....AI diseases are just plain crazy!

magistramarla
03-05-2011, 10:56 PM
Yup, I curl up on the couch with a silk house coat over my clothes, warm socks and a blanket, with a warm cat curled up against me too.
We recently had an '80's party at the Spouses' Club. I got myself a pair of leg warmers for that. Now, I'm keeping them next to the couch and I've added them in when I'm cold.
Hugs,
Marla

BonusMom
03-05-2011, 11:10 PM
I'm thinking that's what our new avatars should be.....all of us dressed in our "Can't Get Warm" finery! Oh, what a hoot that would be!

I can see Rob now.....a Speedo and his "Man Sweater" since he's always so warm.

Some of the members are so young, they probably don't even know what leg warmers are LOL. OMG! You're killing me, M!

Nonna
03-06-2011, 01:03 AM
Where on Earth did you find some? I've been looking but have not found them

porchy
03-06-2011, 01:15 AM
I am hot then cold then hot then cold every day!!! I am either grabbing a sweater or peeling off my shirt & turning on the fan. I had Graves hyperthyroidism in my 20's and had the radioactive iodine to obliterate my thyroid gland, so I've been living on synthetic thyroid hormone for 35 years.....plus I'm in menopause with lovely hot flashes.....my metabolism is so screwed up it would be almost funny if it wasn't so freaking annoying! I'm either freezing or sweating. I can hardly wait for summer.....going from the heat & humidity of the outdoors, into the chill of air conditioning, in & out..... oh man. It's crazy.

magistramarla
03-06-2011, 10:10 PM
Nonna,
Both leg warmers and arm warmers were readily available at the local Walgreen's when we were staying near the theater district in San Francisco. They were only $5 and I bought an assortment for the '80's party, since I was on the planning committee. We gave them out as door prizes.
They are probably a winter item, but I'll keep an eye out each time that we go up there for doc appointments. When I find some, I'll mail them to you.
Hugs,
Marla

magistramarla
03-06-2011, 10:21 PM
I'm thinking that's what our new avatars should be.....all of us dressed in our "Can't Get Warm" finery! Oh, what a hoot that would be!

I can see Rob now.....a Speedo and his "Man Sweater" since he's always so warm.

Some of the members are so young, they probably don't even know what leg warmers are LOL. OMG! You're killing me, M!

BonusMom,
Somehow, I don't think that we would be a pretty sight!

LOL - Rob in a speedo! I wonder if Karen would agree to that?
My sweetie was a serious competitive swimmer in high school and college (broke a few records in the Butterfly Stroke), so he still insists on swimming in only Speedos to this day. I certainly never minded, but it caused our daughters no end of embarrassment when their Dad swam at the neighborhood pool - LOL!!

The girls in the Spouses' club were so cute dressed up in their '80's clothes. They reminded me of my own daughters. I asked them to provide pictures from the '80's and I showed a powerpoint of them. They were all babies, grade school kids or high school kids. I uploaded two pictures - in the 1982 pic, we had two little girls (I was expecting Tom). In the 1987 pic, we were surrounded by all five kids. I was very busy during that decade!
Hugs,
Marla

jmail
03-06-2011, 10:57 PM
... I was very busy during that decade!
It was that speedo!

You don't wanna see me in a speedo! Actually, I'm not sure if you'd *see* the speedo... My favorite hot/cold clothing is an over-sized zipper "hoody" sweatshirt. Zip it up, hood up when cold. Hood down as temp stabilizes. Unzip as the body gets too warm, then remove. Repeat...

rob
03-07-2011, 02:54 AM
Rob - you stand still and the rest of us will gather round you and bask in the heat. Everybody wins. *laughing smiley face*

That's too funny. Karen always runs a bit on the cold side, so together we even each other out!

ETA-Me in a speedo? Good grief!

rob
03-07-2011, 03:13 AM
The girls in the Spouses' club were so cute dressed up in their '80's clothes. They reminded me of my own daughters. I asked them to provide pictures from the '80's and I showed a powerpoint of them. They were all babies, grade school kids or high school kids. I uploaded two pictures - in the 1982 pic, we had two little girls (I was expecting Tom). In the 1987 pic, we were surrounded by all five kids. I was very busy during that decade!
Hugs,
Marla

Ah, the 80's. I remember all the girls dressed like Pat Benatar, and us guys had mullets and dressed like we were in a bad knockoff of Miami Vice. For all the younger folks here who might not know about the 80's look, go rent the movie Fast Times at Ridgemont High.

Hey bud, let's party!

BonusMom
03-07-2011, 08:18 AM
That's too funny. Karen always runs a bit on the cold side, so together we even each other out!

ETA-Me in a speedo? Good grief!

Well, you are the one on WHL who is always too warm and you can't get more stripped down than a speedo!

Fortunately for me, Superman runs warm and doesn't cringe (too much) when I snuggle up to him when we first get into bed--that's when I'm usually the coldest. Fortunately, I warm up quickly once I'm under the covers and my personal heater (DH) is right there.

Not sure, but since I've stopped taking Imuran (late last week) my extremities don't seem to be getting quite as cold-a theory that I meant to discuss with my rheumy at my last appt, but, alas, forgot to.

Do you think the cog fog will go away if my brain warms up a bit?

PS. Long live Spikoli!

SandyR
03-07-2011, 08:38 AM
M- it's funny you say you don't like pj's. I don't either - I hate the feeling of the fabric on my skin under the sheets, but when it's winter time I usually start off with flannel pjs under my flannel sheets, blankie and comforter plus thick socks. I find if I put on new socks right before bed, even if I had socks on previously, I stay warmer. Sometimes I get so hot like this that I start stripping off clothing layers in my sleep. I've been known to go to bed in my alaska wear and wake up in my birthday suit. Of course that causes it's own problem with figuring out how to get dressed again without giving up the warmth of the blankets when all my clothes are scattered on the floor...

jmail
03-07-2011, 09:39 AM
... Do you think the cog fog will go away if my brain warms up a bit?
Nope, not unless you're Spicoli, and can learn to live with it... "Gnarly, dude!"...

tgal
03-07-2011, 11:00 AM
LOL at the "fast times" comments. The 80's. Oh what I could tell! Punky Brewster with the leg warmers started a trend (which I see are coming back), Pat Benatar and Olivia Newton John with the thick headbands over their foreheads. Too funny! Thanks for taking me back there

rob
03-07-2011, 07:22 PM
Nope, not unless you're Spicoli, and can learn to live with it... "Gnarly, dude!"...

At the end of the movie I always laugh at Spicoli's epilogue-

Jeff Spicoli saves Brooke Shields from drowning-Blows the reward money hiring Van Halen to play his birthday party.

I"ve always wondered if Mr. Hand showed up for the festivities...

BonusMom
03-09-2011, 12:18 AM
At the end of the movie I always laugh at Spicoli's epilogue-

Jeff Spicoli saves Brooke Shields from drowning-Blows the reward money hiring Van Halen to play his birthday party.

I"ve always wondered if Mr. Hand showed up for the festivities...

Mr. Hand probably brought the Mrs' "special" brownie recipe!

Too funny, Tgal, about your mention of Punky Brewster...that (Punky) has been my DD's nickname since she was about two (short, of course, for Pumpkin).