Has anyone been diagnosed with Wilson's Temperature Syndrome and are being treated??

[nschacht]

I have been battling low thyroid like symptoms for over a year now. I have all the classic symptoms of hypothyroidism. I have had all the tests a million times, and they all come back normal. I have been to so many Doctors, but nobody wants to try anything. I am progressively getting worse. My body temperature is low, my metabolism has slowed way down. I use to go to the gym every day, but now can barley make it. When I do go, I try to sit in the sauna for a half hour or so. I feel so much better when I get my temperature elevated, but unfortunately the results don't last long. I have short term memory loss, and concentration, and on and on. I have read about Wilson's Temperature Syndrome alot, and was wondering if anyone has officially been diagnosed with it.

[Unregistered]

I have been curious about this myself.............what is your basal body temp.? I don't even reach 98 degrees with my basal, it is usually between 96.5 and 97.5 depending on the time of the month.

Have you been to a specialist?(Endocrinologist)

[Unregistered]

Hey go to this site www.diagnose-me.com and answer the 900 questions. You can get a simple diagnosis for free but for $25 it is pretty thorough and for me it came up with Wilson's as part of some of my issues. It also told me how to resolve many of my issues that can be done without a doctor based on changing my diet. This is an awesome site. Uses your symptoms from questions that doctors don't have time to ask. You can also plug in any labs that you may have done. I think for $47 you can have a doctor review this as well. I had no idea about some of the things. For Example: by drinking so much coffee, I have fatigued my adrenal glands by making them release adrenaline all day and created insomnia and you recharge your adrenal glands between 11pm and 1am (I am never asleep during that time). This is a big factor for Wilson's. Try it - I learned so much with just the $25 one. It may be very helpful for you and you can print it out and bring to your doctor.

[nschacht]

Thanks for the info. I have actually been to the Diagnose me website, and it came up with thyroid issues, but didn't specifically say Wilson's. Maybe I'll try it over again. Yes, I have been to an Endo. and he didn't even want anything to do with me since my levels were all normal. My basal temperature is barley 97, and pretty much stays right around there throughout the day. It's all just getting pretty frustrating. I don't understand why we can't just try a treatment for a little bit. If it doesn't work, I'll quit. They are all to scared to treat people anymore, because of the liability. Sad!!!

[Unregistered]

Mine is regularly 96, must be half dead, has been this low my whole life. Now I have some type of inflammation/infection so it is always 100.1. Going in for more sinus surgery. I am wishing for my 96 back!

[Unregistered]

Do y'all have trouble gaining weight with a metabolism this slow?
I do.....ugghh!

[Unregistered]

My daughter was diagnosed last year at age 34 with Hashimoto' disease. İ had been telling drs that she had a thyroid problem since she was 12 but the test were always 'normal'. Finally when her bp hit 194/164 and she was rushed to the hospital, a new (to her) dr sent her for thyroid tests. She said the usual tests were not enough and sure enough the specialists called her in as a emergency. She now takes a small dose of thyroxin, has lost 100lbs and the PMS and mood swings etc etc. Do see an endroconologist and push for more than the T3-4 blood tests. They are not reliable at best and useless at times. İ have had the problem all my life and it runs in the family. No one else cares as much as you do and no one has as much to lose as you if you are not receiving the right treatment. İt's your life...fight for it. Good luck.

[Unregistered]

I have not been "officially" diagnosed with Wilson's. I self diagnosed by reading the website and looking at the symptoms. The nearest doctor for on their website listing was over two hrs away.
I was so bad that I was only staying awake about 8 hrs a day. I couldn't eat, and the when I did make myself I had to sleep directly after. I had bags under my eyes at age 26 and I looked like the walking dead. These were only some of my symptoms.
I took the natural pills thyrocare and adaptogen for 4 months. I started eating more, staying awake all day with only 6 hrs sleep a night. I had more energy and I lost over 20 lbs without any additional exercise.
I had to stop taking the medication do to financial problems and I am noticing that I am slowly getting worse. My temperature was up from 96.4 to 97.6, and it is now going back down. I need naps during the day again, and I am unable to eat full meals. I am lucky if I can get down a snack twice a day. And even that makes my unable to function. I can't think straight and I have no energy or ambition.
I hope this info helps you. I competely understand what you are going through. I assure you, it CAN be fixed.
Lynette
dregallo@netzero.com

[Unregistered]

The problem with "normal" test results is we are not all cloned!! So what may look like normal isn't for our own bodies. I have been this way for yrs, with low temps, sleepy, weight gain, low thyroid, but normal...grr. Anyone take supplements for idoine or anything??? Do they work?? I found sea salt helps a little, it has other minerals in it.
Have ya been tested for Lyme disease?? Lyme taxes the thyroid and the adrenals too. I have Lyme , just dx'd. Just another thought.... There is a good site called stopthethyroidmaddness.org theres alot of help and info there .Hope we all feel better soon.

[Unregistered]

Well, in my country doctors are totally afraid of me talking of WTS... It´s like
scaring a small child when talking with doctors about having T3 as a
medicine. I can´t afford to go abroad to get a doctor that understands, and
bying thyrocare, it can be taken in customs... I have tried everything els!
Today I am sensitive to a lot of stuff in food, like natriumglutamat and so on.
On top of it all I work hard, have to cook EVERYTHING myself and I have to
go abroad to get treated...
I´m killing myself just to live! But doctors here just say I´m fine... Tested and
retested... 2 hours... 2 hours ! If I only had THAT chance!