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** THYROID PROBLEMS?? LOOK AT WILSON'S SYNDROME
I have been dealing with a body temp averaging 96.6, weight gain (over 70 lbs) and cannot lose it, severe insomnia, and 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 because 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 David 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 body must sweat to release 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 caffeine. 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 critical 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, because many will try to 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 because 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 doctor 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 doctors cannot comprehend this, I will never understand. They only deem you depressed and want to give you pills so you go away and die quietly. 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
Pat
I have been to doc after doc and they all wanted to put me on anti-depressants...all of them because 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 David 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 body must sweat to release 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 caffeine. 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 critical 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, because many will try to 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 because 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 doctor 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 doctors cannot comprehend this, I will never understand. They only deem you depressed and want to give you pills so you go away and die quietly. 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
Pat
COMMUNITY LEADER
Yes, we are saying that our medical profession lacks training. The time a typical pcp gets on thyroid training in med school is minimal. Not even a lot of endos are good thyroid doctors. Any doctor that discounts obvious symptoms as "hypochondriac" or "non existent" is not a good doctor, whether it be regarding thyroid or other issues.
I'm speaking only for myself, but I think gimel and goolarra will probably agree with me; I'm not right, simply because I read it on the web; I am right, because I see too many patients being treated, based solely on TSH, and they aren't getting well. You have to admit there has to be a reason; and 9 times out of 10, that reason is because FT3 and FT4 are not being looked at, or if they "are" being looked at, they are being ignored or considered as "normal", no matter where they fall in the ranges........ what's normal for you isn't necessarily "normal" for me and vias versa. gimel has some excellent data on the ranges and how they should be revamped, like the TSH range; which by the way, was changed over 8 yrs ago, but most labs and doctors ignored AACE..
As to disregarding someone elses research -- yes, I do that sometimes, if there is more evidence against a treatment protocol than there is for it. Our goal is help people get well, and if I see a protocol that could be more detrimental than helpful for some people, yes, I will discount it.
As to over analyzing - I try not to do that, because a lot of newly diagnosed people, didn't know a single thing about thyroid issues until they got the call from their doctor saying they are hypo, or hyper; they don't understand what is happening to them, so in some cases, it's important to help them along the way, one step at a time.
In regards to "whose word to believe" - the patient is the only one who can make that determination. I/we freely admit that we aren't doctors; we simply try to guide and support people based on our experience and research.
I'm speaking only for myself, but I think gimel and goolarra will probably agree with me; I'm not right, simply because I read it on the web; I am right, because I see too many patients being treated, based solely on TSH, and they aren't getting well. You have to admit there has to be a reason; and 9 times out of 10, that reason is because FT3 and FT4 are not being looked at, or if they "are" being looked at, they are being ignored or considered as "normal", no matter where they fall in the ranges........ what's normal for you isn't necessarily "normal" for me and vias versa. gimel has some excellent data on the ranges and how they should be revamped, like the TSH range; which by the way, was changed over 8 yrs ago, but most labs and doctors ignored AACE..
As to disregarding someone elses research -- yes, I do that sometimes, if there is more evidence against a treatment protocol than there is for it. Our goal is help people get well, and if I see a protocol that could be more detrimental than helpful for some people, yes, I will discount it.
As to over analyzing - I try not to do that, because a lot of newly diagnosed people, didn't know a single thing about thyroid issues until they got the call from their doctor saying they are hypo, or hyper; they don't understand what is happening to them, so in some cases, it's important to help them along the way, one step at a time.
In regards to "whose word to believe" - the patient is the only one who can make that determination. I/we freely admit that we aren't doctors; we simply try to guide and support people based on our experience and research.
This thread may have too much going on in it already to launch on a discussion of the merits of TSH.
How do I know whose word to believe? I filter everything through my little brain and draw my own conclusions.
"The web site says TSH is not worth testing, however, millions of doctors use that, so we are essentially saying our medical profession lacks training, however, we are correct because we read it on the web."
No, not because we read it on the web, we are correct because we see how many people are misdiagnosed and mistreated based on it. How many people have to be mistreated due to TSH-only testing before we are convinced?
In my one post above, I was actually trying to get an exchange of information going. I find this subject interesting, and I would love some more information. It has not been forthcoming. If we can't exchange ideas and opinions without being viewed as "attacking", we really have no business existing (the forum, that is, not individuals).
How do I know whose word to believe? I filter everything through my little brain and draw my own conclusions.
"The web site says TSH is not worth testing, however, millions of doctors use that, so we are essentially saying our medical profession lacks training, however, we are correct because we read it on the web."
No, not because we read it on the web, we are correct because we see how many people are misdiagnosed and mistreated based on it. How many people have to be mistreated due to TSH-only testing before we are convinced?
In my one post above, I was actually trying to get an exchange of information going. I find this subject interesting, and I would love some more information. It has not been forthcoming. If we can't exchange ideas and opinions without being viewed as "attacking", we really have no business existing (the forum, that is, not individuals).
Okay, may be obsessed is the wrong word.
I should had worded it as "over anaylze".
You guys say you research the web for ideas, answers, information, which is fine. At the same time you disregard someone's elses research on the issue because it does not match your view or what you have read.How can you believe one web site over another. How do you know whose word to believe? The web site says TSH is not worth testing, however, millions of doctors use that, so we are essentially saying our medical profession lacks training, however, we are correct because we read it on the web.
I should had worded it as "over anaylze".
You guys say you research the web for ideas, answers, information, which is fine. At the same time you disregard someone's elses research on the issue because it does not match your view or what you have read.How can you believe one web site over another. How do you know whose word to believe? The web site says TSH is not worth testing, however, millions of doctors use that, so we are essentially saying our medical profession lacks training, however, we are correct because we read it on the web.
COMMUNITY LEADER
Everyone is entitled to an opinion.
We all know that the medical community often lacks in knowledge regarding thyroid issues (as well as others) and many of us have had to fight, long and hard, for proper treatment. We also know that there are a lot of people who come to this forum, every day, looking for the exact help we give them, because they *don't* know what tests to ask for, where their results should fall in the ranges, what that ultra sound report means, etc. Many of them "assume" that the doctor knows best, and follow blindly (even I did that for a while, until I found this forum and started reading posts); this often keeps them sick for much longer than need be.
The obsessed people on this forum helped me get well, and while I could have walked away to enjoy my life in peace and quiet, I chose to stick around and pay it forward, which why I sometimes, spend hours/day on here responding to posts and trying to help. Judging from the number of PM's I get on a daily basis, I must doing 'some' good.
If my desire to help people, in turn, means that I am "obsessed" with thyroid issues, then yes, I guess I am. It turns my stomach every time I read a post from someone who is desperately ill, and whose doctor refuses proper testing, medication, etc. or maybe doesn't even know what to test for or how to interpret labs. I will save my sympathy, knowledge and research abilities, and whatever other attributes I have, for those who appreciate them.
As I said in a post on this thread earlier today --- Just because a doctor said it or did it, doesn't mean it's right.
We all know that the medical community often lacks in knowledge regarding thyroid issues (as well as others) and many of us have had to fight, long and hard, for proper treatment. We also know that there are a lot of people who come to this forum, every day, looking for the exact help we give them, because they *don't* know what tests to ask for, where their results should fall in the ranges, what that ultra sound report means, etc. Many of them "assume" that the doctor knows best, and follow blindly (even I did that for a while, until I found this forum and started reading posts); this often keeps them sick for much longer than need be.
The obsessed people on this forum helped me get well, and while I could have walked away to enjoy my life in peace and quiet, I chose to stick around and pay it forward, which why I sometimes, spend hours/day on here responding to posts and trying to help. Judging from the number of PM's I get on a daily basis, I must doing 'some' good.
If my desire to help people, in turn, means that I am "obsessed" with thyroid issues, then yes, I guess I am. It turns my stomach every time I read a post from someone who is desperately ill, and whose doctor refuses proper testing, medication, etc. or maybe doesn't even know what to test for or how to interpret labs. I will save my sympathy, knowledge and research abilities, and whatever other attributes I have, for those who appreciate them.
As I said in a post on this thread earlier today --- Just because a doctor said it or did it, doesn't mean it's right.
I have to agree with gimel and jenniferk86 that I don't quite understand how this constitutes "obsession". Perhaps what you meant was that we were being presumptuous...that we had no right suggesting tests or interpreting results. The medical community has demonstrated a serious lack of knowledge when dealing with thyroid issues (not confined to thyroid issues, in my opinion). As gimel said, most of us have done lots of research, much of it in pursuit of our own thyroid health. In the process, we have been exposed to more imformation on thyroid (and much more patient input) than the average doctor's training provides.
How would you suggest patients get their information?
How would you suggest patients get their information?
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