Discussions By Condition: Endocrine conditions

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

Posted In: Endocrine conditions 49 Replies
  • Posted By: nschacht
  • November 20, 2006
  • 11:26 PM

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.

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  • 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)
    Anonymous 42789 Replies
    • November 22, 2006
    • 03:12 AM
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  • 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.
    Anonymous 42789 Replies
    • November 22, 2006
    • 04:52 AM
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  • 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!!!
    nschacht 1 Replies
    • November 22, 2006
    • 01:41 PM
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  • 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!
    Anonymous 42789 Replies
    • November 22, 2006
    • 09:33 PM
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  • Do y'all have trouble gaining weight with a metabolism this slow?I do.....ugghh!
    Anonymous 42789 Replies
    • November 23, 2006
    • 00:34 PM
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  • 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.
    Anonymous 42789 Replies
    • December 11, 2006
    • 01:54 PM
    • 0
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  • 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.Lynettedregallo@netzero.com
    Anonymous 42789 Replies
    • January 16, 2007
    • 05:33 AM
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  • 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.
    Anonymous 42789 Replies
    • February 3, 2007
    • 01:36 PM
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  • Well, in my country doctors are totally afraid of me talking of WTS... It´s likescaring 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!
    Anonymous 42789 Replies
    • February 28, 2007
    • 04:40 PM
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  • I have been tested 3 times in 2 years for thyroid problems and my levels are apparently normal, but more recently, especially after giving birth, I am experiencing numerous aches and pains etc., whereas once upon a time i was a very healthy person with no complaints. Last night i went onto to diagnose me and the highest concern was hypothyroidism in which it mentioned wilson's. Funny thing is i was expecting arthritis because of my joint pain but when reading up on this i found that all my symptoms are listed. I cannot lose weight, whether eating healthy or not eating at all, i am irrratiable(sp) i have a mentioned joint pain, neck pain, persistent headaches, painful periods, i get easily upset, i can't stand the cold yet when dp is sweating i'm wrapped in ablanket. My hands and feet are extremely dry, and for the first time in my life i have skin problems, not noticeable to anyone but me and the beautician, but they're creeping up. I am persistently tired yet not always sleepy - fatigue - I suffer from insomnia, poor concentration and my short term memory is decreasing...So i think i made my point, i have pretty much all the symptoms, yet my doc says there is nothing wrog with my thyroid... He has changed my pill for the perio pain, he is taking tests for arthritis, he has me on a cholesterol reducing diet because of my last tests, had=s recommended i attend a sleep clinic yet these are all connected with the one thing that was originally thought 2 years ago and symptoms are gradually increasing...Problem? I am in Ireland and there is no registered physicians on the site... I don't want to go to the ends of the world trying to get this medication, but do I need it?? I think i do, doc thinks no, i do not want to end up with arthritis, I am only 26, i have 2 young kids so fatigu and children mean i'm getting nothing else done...My reason for posting is this, do you guys think this is worth the fight, i mean trying to get medicated or is there a way of getting the medication online and if so do you think it's a wise move and has it really changed anyone's life that much???
    Anonymous 42789 Replies Flag this Response
  • Here's my story (it's scary how much like all of yours it is!). I was diagnosed with Hashimoto's Thyroiditis several years ago and told there was nothing that could be done. I am one of the unfortunate one who tended to get really bad "hyper" attacks (ha****oxicosis) - terrifying heart palpatations, heat intolerance, racing mind, anxieity, shaky hands. These symptoms are a result of "too much" T3 in your blood stream which happens to some people as the thyroid is being destroyed. These attacks alternate with the "hypo" symptoms of brain fog, depression, cold intolerance, constipation, etc.These two states have (very rarely) been interrupted by periods of feeling fine. All this was happening while my T3/T4 levels were in the "normal" lab range. Needless to say, I had to find some way of feeling better so I embraced just about every "alternative" out there. Each has helped to one degree or another. What has helped me most was changing my diet and adopting a program of nutritional supplements. All of which I researched on the web. During one of my "bad" bouts, I came across Wilson's Temperatue Syndrome and I starting keeping of track of my temperature. Lo and behold - it was rarely above 97! I found a doctor who was willing to prescribe the T3 kit for me - I practically begged her! She was in the process of moving and really didn't want to but there was nobody else within driving distance. It is a very complicated protocol and I was pretty much on my own with it. Here are two things I would recommend: Make sure you go through it with a doctor who is knowledgable and be absolutely sure you are a good candidate heart wise and that you don't tend toward "hyper" symptoms anyway.I followed the protocol to the letter and when my temperature started to increase, a lot of my symptoms were better but you have to keep going to try and "capture" your temperature as close to 98.6 as you can. As the dosage increased, so did the side effects and they were pretty scary!Really really bad heart palpatations and anxiety. You are convinced that you're having a heart attack! Dizzyness like you wouldn't believe. I actually missed my own gallery opening because I couldn't get out of bed without feeling like I was spinning! If you are working with a doctor close-by they can give you a sort of antidote but it wasn't an option for me, I had to "ride it out". So it becomes a matter of "how much can you take" vesus how high you can get your temperature to go up. I also started having anxiety attacks that lasted a couple of months even after I stopped the protocol. They finally did go away though.Ultimately, my temp went up to around 98.2 and that was as far as I could go. I had to start going "down" with the T3 (because of the side effects) and so I guess I never really "captured" my temperature - you're supposed to keep it at that level for two weeks or so. I did learn a very important thing though and that is that when my temperature is higher - I definitely feel better - there is a corealation for sure. It's really interesting but not for cowards! moon
    Anonymous 42789 Replies Flag this Response
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  • Hello Everyone,I am new to this site and thought I'd comment on the Wilson's Temperature Syndrome protocol.I fired my GP after 6 years of T4 with no real change. I hired a naturopath who had me record my temps and, lo and behold, they were averaging 96.4 to 97.2. I read the Doctor's Manual for the WTS protocol, as well as the book "Wilson's Syndrome: The Miracle of Feeling Well." I have been on the protocol for 3 weeks now, taking the time-release T3 and slowly increasing it. I got to average temp of 98.4 and am holding at a dose of 82.5 mcg. for 3 weeks before ramping down.One thing is sure: you do feel better with a higher temp.I'll let you know how it goes.Judy
    Jwelte 1 Replies Flag this Response
  • http://www.wilsonsthyroidsyndrome.comthis site does contain a physician's search for dr's who are certified & treat WTS & offers directions on how to measure & track your temp. Good luck - I am still exploring my own symptoms and believe this is a major contributing factor to how I feel. I had Graves dis. (Hyperthyroidism) had radiation treatment & have been Hypothryoid ever since (4 yrs). Can not loose weight, extremely fatigued, all the classic symptoms etc. Taking .375 synthroid daily - still experiencing problems. Someone posted to fight for your health - this is an area we are forced to fight hard for better health & treatment!~ Stay strong - and may God be with you all!
    Anonymous 42789 Replies
    • November 13, 2007
    • 07:36 PM
    • 0
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  • Has anyone gone through the T-3 treatment and did their symptoms get better? So far everyone talks about their symtoms before treatment. Anyone do the treatment? What symtoms went away or got better?I too have 95.3-97.7 temps, very low in the evenings. Headaches every evening, 20 pound weight gain in about a month 2 years ago right after a hysterectomy that will not go away no matter what I do. Adreanals were very low, now normal after treatment. Tyroid low taking Levoxyl. T4 not converting to T-3 while on Levoxyl .50 mcg per day. Getting worse, tired, very bad constipation, cold all the time, moody, less and less energy. My doc is a ND and not listed on the site either, but is a doctor that brought this to my attention, wants me to think about doing the treatment and I am going to give it a try, when I get home from the holidays. Just one person on this site had talked about the experience of being on the T-3, didn't sound fun at all, and scary.
    clg728 2 Replies
    • December 17, 2007
    • 10:55 PM
    • 0
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  • I too noticed a lot of similar symptoms after having children. With my 4 child it got even worse and I had had enough of not living. I'd gained weight, lost hair (lots), moody, no energy, irritable, acne, etc. You name it and it's similar to what everyone else is mentioning. I did however see and Endocronologist who is helping to get me to the root of my issues. Turns out (much to his surprise) that my Thyroid was fine. The issue that I had was, as he put it, my Adrenal is pretty much non-active. As if my fuse had blown as he put it. Surprisingly, my Coritisol levels also were extremely low. He advised me to take my multivitamins (plenty of B vitamins), Omega 3 fish oil capsules but most importantly advised me to make sure that I have a Gatoraid and banana daily. He said the salts and potasium will help with slowly getting me back on track. He also has me taking 20mg of Hydrocortisone in the a.m. and 10mg in the afternoon. I have noticed a difference - SLOWLY. I didn't get this way overnight so I know that it is going to take awhile to get back to normal. He also mentioned that the lack of B vitamins were a huge role in what I was feeling and that I needed to force myself to back active. He recommended getting a small trampolene (sp) and run in place or just jump for 5-15 min. to move things inside around and get them active (costs $20 at Wal-Mart). Sounds silly but it is working. To sum it up. It may not be your thyroid, most likely it could be your Adrenal gland is not working properly along with your cortisol levels. Have them checked. P.S. He also made me wear a glucose monitor for 1 week thinking that I may have diabetic issues but my range was within target considering that I was taking the Hydrocortisone (which elevates sugar levels). So I am low on my sugar also. (not sure of the technical name) which is why I constantly craved the pick-me-up things that actually attack you. Sugars and coffee are your worst enemies at this point. It's hard but persist with these tests and hopefully you can get to the bottom also.I have been tested 3 times in 2 years for thyroid problems and my levels are apparently normal, but more recently, especially after giving birth, I am experiencing numerous aches and pains etc., whereas once upon a time i was a very healthy person with no complaints. Last night i went onto to diagnose me and the highest concern was hypothyroidism in which it mentioned wilson's. Funny thing is i was expecting arthritis because of my joint pain but when reading up on this i found that all my symptoms are listed. I cannot lose weight, whether eating healthy or not eating at all, i am irrratiable(sp) i have a mentioned joint pain, neck pain, persistent headaches, painful periods, i get easily upset, i can't stand the cold yet when dp is sweating i'm wrapped in ablanket. My hands and feet are extremely dry, and for the first time in my life i have skin problems, not noticeable to anyone but me and the beautician, but they're creeping up. I am persistently tired yet not always sleepy - fatigue - I suffer from insomnia, poor concentration and my short term memory is decreasing...So i think i made my point, i have pretty much all the symptoms, yet my doc says there is nothing wrog with my thyroid... He has changed my pill for the perio pain, he is taking tests for arthritis, he has me on a cholesterol reducing diet because of my last tests, had=s recommended i attend a sleep clinic yet these are all connected with the one thing that was originally thought 2 years ago and symptoms are gradually increasing...Problem? I am in Ireland and there is no registered physicians on the site... I don't want to go to the ends of the world trying to get this medication, but do I need it?? I think i do, doc thinks no, i do not want to end up with arthritis, I am only 26, i have 2 young kids so fatigu and children mean i'm getting nothing else done...My reason for posting is this, do you guys think this is worth the fight, i mean trying to get medicated or is there a way of getting the medication online and if so do you think it's a wise move and has it really changed anyone's life that much???
    Anonymous 42789 Replies
    • January 5, 2008
    • 03:27 AM
    • 0
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  • hello, i'm not sure about wilson's but i have had almost exact same symptoms plus alot more and hypothyroidism (kinda, they always thought it was till taking the pill and getting the pictures, now it is called 'sub clinical hyproyhyroidism', however i know that that nae will only last until i prove otherwise. this is some of my story; life support 5 days in 97, asthma, emphysema, c.o.p.d., growing skin lesions may be (porphoria,pct), 3 brain aneurysm w/rupture ?(13hr brain surgery), high, b.p., cholesterol, triglycerides, sub clinical hypothyroidism, connected lumps in breast and all the symptoms you mentioned plus few. anyway, have you had any exposures to chemicals? mine was a 3 1/2 year natural gas leak
    still alive 20 Replies
    • January 6, 2008
    • 02:34 AM
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  • I would suggest contacting all the ND's in your area. And ask each about this specifically, they may be very knowledgable and not be on the site.My ND is not listed on the site as a suggested doctor, yet she is the one who suggested I look into Wilson's Temp. Sydrome and gave me all the literature to read, web info etc. I am going to start this soon. My problems all started 2 years ago after a hyterectomy. My temps get down in the 96's and rarely in the 98's. Gained about 20 pounds in 1 month that won't budge at all, well a little in each direction, I am on thyroid meds, my adrenals were blown now they are ok, my biggest complaint is nightly headaches, bad where I take a vicadin every single night almost, and the weight. I work out every day and eat correctly (no white sugar, flour, etc). I am still waiting to hear about ANYONE that has had results from the T3 therapy, not just feel better, specifically. Headaches gone? Lost weight? etc. Is anybody out there getting this type of relief??
    clg728 2 Replies
    • January 7, 2008
    • 07:02 PM
    • 0
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  • This is a link that may be able to help you find someone to help you. http://www.wilsonstemperaturesyndrome.com/IdentifyingTheProblems.htm I saw a specialist for Wilson's syndrome in 2000 and have now started treatment again. I did very well then and only had to follow the treatment for around 3 months. I am now taking the T3 compounded medication and DHEA-25 again. I have had all the same symptoms and all the same results that you described. Don't give up, I actually got my regular medical doctor to prescribe the medication for me because I am fortunate to have a pharmacy where I live that compounds the medication. I am a 40 year old mother of two adult boys now. I can say even after one week of therapy I am already starting to feel more like I used to feel. I gained 30 pounds over the last two years with no help of getting it off, cold all the time, brain fog, everything that Wilson's describes as symptoms. I have a low temp around 96 and low blood pressure. I don't really remember having any bad symptoms from using the therapy in 2000, it was just a pain to take your temperature all the time. Hope you find the right doctor and medication to help you soon.
    wmlove 1 Replies
    • February 18, 2008
    • 05:19 AM
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  • I have all of the symptoms of Wilson's except for weight gain - in fact, I have the opposite problem! I have always been on the thin side (but still healthy) however, suddenly in 2007 I lost 20 lbs in about 4 months without any change to my diet or exercise. I finally stopped losing weight and have managed to keep my weight stable at around 96-97 lbs by eating CONSTANTLY and not moving at all. I am waaay too thin - to the point that my clothes are uncomfortable because they rub against my jutting bones. I seriously look anorexic and hate wearing shorts or short sleeves because people stare. Has anyone with sudden dramatic weight loss been diagnosed with Wilson's syndrome??? Every other symptom is spot on for me except that one.
    Hollydayzd 3 Replies
    • August 30, 2008
    • 02:46 PM
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  • I was just diagnosed this week with Wilsons Temperature Syndrome. I too had many low temps- my average for the day is sometimes 96.3. I hit temps as low at 95.4 at different times of the month. My energy is very low and my brain feels like it is in slow motion most of the time. I am starting the T3 replacement tonight at 8:00. I'll let you know if it helps.
    schleeter 1 Replies
    • October 14, 2008
    • 00:23 AM
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