Is being permanently cold normal

[chillymiss]

Hello, I'm new.  Have just had my throid checked as I feel cold & tired all the time.  Came back normal.  Bought a new thermometer just to prove to everyone how cold I am.  Have tested myself several times & the highest it's been is 96.4 (35.8 c) average about 95.5 (sometimes as low as 94.1 when our heating failed or if no heat on in the house)  I am 57.  I had a thyroidectomy 4 years ago to remove goitre.  

Other symptoms I have include lowish blood pressure/pulse, poor sleep (usually waking up cold), night time despair (I felt suicidal early one morning which frightened me), poor concentration, poor appetite.  Can't seem to control my temperature (i'm either too cold or too hot.  I can't stand the heat etiher.  I just want to feel normal.  Does this sound like hypothorid & why were my results normal?  Could it be something else like poor circulation?  

Thanks for looking.

[jenniferk86]

Patriciat.  

I believe you have all the symptoms you state.  I believe you have a real problem, but it is not wilsons temperature syndrome, they are all thyroid symptoms, there is not one symptoms from wilsons that cannot be correlated with thryoid.  There is a bit of information about the conversion of t4 to t3 and free t4 converting to the RT3 being not biologically active, this can cause hypothyroidism that appears normal in TSH and freet4 testing.  This is probably your case and you should post your thyroid tests results.  Please read the other post where you originally posted about this syndrome.

[chillymiss]

PS

I've looked at the Wilson's Tempertature site but I find it a bit confusing & wouldn't know what to order without seeing a scpecialist as I don'twant to get it wrong.  I'm taking iodine & multivitamins & avoiding goitrogen food as I don't want another goitre.  I've also ordered some cocnut oil as I've heard it's good at aiding constipation & boosting metabolism.  

Thank you & everyone for your help and input

[chillymiss]

Some of what you said sounds familair.  I don't sweat much, but I do perspire a little  when my temp goes over 97.  I actually feel too hot if my temps are normal & I find heat uncomfortable too.  In fact getting the temperature right for me is a bit of a fine art.  I'm normal weight, but I'm tall  & I undereat so I should be thin.  I think I've been like this for a long time but now at 56 getting worse.  I also suffer short term memory loss and confusion.  My metabolism is  slow i.e. thought processes & actions (everything takes me twice as long).  I understand docs in the US treat people like me but here in the UK they don't.  They just tell you to turn the heating up & put on another jumper & it's normal to feel cold & tired at my age.

[patriciat]

I have been dealing with a body temp averging 96.6, weight gain (over 70 lbs) and cannot lose it, severe insomnia, inability to sweat and so on for over 15 years.  I am now 53 years old.

I have been to doc after doc and they all wanted to put me on anti-depressants...all of them cause my thyroid testing comes back "in-range".  Is all testing a "one size fits all"?

Anyway, I have spent years trying to find out what is wrong with me when no one else could.  I located Dr Daivid Wilson aka Wilson's Syndrome.  There are not many docs trained to understand this disorder, but it is REAL!

Let me tell you I was freezing all of the time, sleeping with blankets year round, going to a DRY HEAT sauna at over 140+ degrees for 30 minutes several times weekly...not one drop of sweat!  I would go outdoors and living in the south we have some warm summers.  My skin would be very hot, yet no sweat.  At the most, a slight clammy feel, but this was rare.  Your bofy must sweat to rlease toxins, but mainly to cool itself down when overheated.

At one point my body temperature was down to 95.5.  Over 3 degrees below normal!   Again, no doc anywhere thought the low temp or sweating was an issue.  Vertigo also became a huge factor too.  Lying down is usually when it hit me.  A positional vertigo.

My face would turn bright red when outdoors in the heat, yet no sweat.  When I cried, same thing...bright red!  The insomnia so severe I was sleeping only 2-4 hrs nightly.  Then sometimes no sleep for days.  I do not drink caffiene.  After a few years of this, I told my hubby I felt like I was not going to live much longer as I was so weak.  I took out life insurance at that point as well.  The insomnia is critical cause you must have sleep nightly so you can build your cortisol levels back up...cortisol is cirtical in a human.  You need deep REM sleep.

I was put on biodenticals, hydrocortisone, Synthroid, Armour over the years.  None of this worked.  There is a problem with converting T3.  Taking these for many people will not work, cause many will tryo to deal with the T4 part of thyroid problems only.  Again, they do not understand fully T3 or Wilson's Syndrome.

Other symptoms...low BP, low pulse and respiration. So tired by noon to 3pm I had to lay down.  I quit my job as a healthcare professional cause I was so tired and weak.  After I ate anything, I felt very sick. Started having pain in my legs due to lymphatic fluid not being able to move...again from not being able to sweat

Well, a doc that believes and was trained in Wilsons, gave me T3.  Within DAYS my temp was back up to 98.6, I was sleeping and more than anything...I was sweating!!!  I mean it was wonderful!  This changed my life!

Please look at this as the general medical community does not acknowledge Wilson's.  There was also testing done on horses for anhidrosis that could not sweat as well.  They were put on iodine and showed significant improvement.  

There is something to this and why docs cannot comprehend this, I will never understand.  They only deem you depressed and want to give you pills so you go away and die qiuetly.  Sorry, I refuse to be anyone's guinea pig anymore!  Plus, how can a doc assess you as depressed in 3 minutes when they know NOTHING about you?  They cannot, so do not let them!  After over 12 docs in the last several years, I found an answer.

Again, look at the Wilson's Syndrome site and find a doctor that has been trained to treat this.  T3 is a hormone and you want to not play around with this at all.

God bless you and I pray for a speedy recovery
Pat

[Barb135]

We often hear that people in UK have a harder time getting proper treatment and tests, because of the NHS, so you may have to be prepared to look around for a doctor who will treat you clinically.

If you had a TT 4 yrs ago, are you currently on any thyroid med?  When did you have your last tests done?  

It's always a good idea to get a copy of your lab results for your own records.  In the US, doctors are obligated to give us a copy if we ask for it.  I note on each one of my reports, the med I was on, as well as symptoms; that way, I know what levels to aim for.

[gimel]

If you are going back to the surgery next week, you should try to get them to test you for the biologically active thyroid hormones, which are free T3 and free T4 (not the same as total T3 and total T4).  Also, since hypo patients frequently have deficiencies in other areas, it would be good to try and get tested for Vitamin D, B12, iron/ferritin, and selenium.  All of these can indirectly be associated with symptoms.

[chillymiss]

I will order Mary Shamon's book.  I'm in the UK so getting a good Endo may be more difficult.  I'm lucky that I'm retired and I have an understanding husband, but I would like to feel better so that he can have a cheerier, more responsive wife.  I also suffer from headaches/migraines & constipation, but not so much hair coming out - a little more than usual, but I have natually thick hair anyway - but it has got thinner lately.  Thanks for help.

[chillymiss]

Thanks.  I will try & get them from the surgery when I go next week.

[cressida72]

You sound Hypothyroid.  I am constantly cold.  I get up in the middle of the night.  Numbers mean nothing, it is about the symptoms.  Normal is a relative term, do you feel normal?  Find an internist or Endocrinologist that will listen to your symptoms instead of just look at numbers.  That is what saved me.  My first Endo was not going to start treatment because my numbers looked fine, meanwhile, I was laying down as soon as I got home from work.  I was up all night, freezing cold.  My hair was falling out.  I researched online at Mary Shamon's site and found an Endo in my area that had a record of listening to his patients.  He started the treatment not based on numbers, but on my symptoms.  One year later, I feel like my old self.  Don't let them tell you it is normal if you don't feel normal.  Fight it out.  Good Luck.

[gimel]

From your symptoms, and having had a thyroidectomy, it sure sounds like it could be related to being hypo.  As far as your test results, please understand that what many doctors consider as normal, is frequently inadequate to relieve symptoms for the patient.  

If you will post your thyroid test results and the reference ranges shown on the lab report, members will be happy to help interpret and advise further.