Re: New TSH ranges according to AACE

[Guest guest]

Pard, where's the soapbox I got for you?

Excellent......

Feisty

Re: New TSH ranges according to AACE

That may be part of it... but its also true that many folks are suffering from hypo symptoms because they are within the old 'normal' range.

The new ranges were determined more than a year ago... I posted those a while back... from that Australian site that I found.. they have the best charts and description of the testing process.... But so many of the docs and/or labs are not using the new ranges.... we see more and more members coming by that are over 3.0 and being told that they are just fine, in range, but feeling miserable...

Others that are between 2.0 and 3.0 that don't feel so hot..... and the charts are showing that more folks are at 1.25 than anywhere else within the range... if we could just get docs to realize that ... and strive for that as a goal and then tweak from there.. I think we'd have a lot fewer folks that are ending up in bed or wheelchairs... losing their jobs, their lives, their families... Many even ending up on disability when their resulting symptoms get severe enough.

I wonder.... for the folks that do well on synthetics... are they the ones that get diagnosed rather early? As in not being long term hypo with all kinds of damage to their bodies.... Are they still able to quickly convert the synthetics to usable T4 due to digestive systems that still function correctly? Are the able to use that T4 to maintain the stores in their tissues and so are able to convert it.....

Are those of us that are poor converters those that were hypo for LONG periods of time and our bodies are just so out of whack that they are not able to convert enough T3 or convert it quickly enough to be able to help our poor abused bodies?

We do know that some folks do well on synthetics... We are learning that most of the folks that end up in support groups, like this one and the 200 plus others in yahoo groups alone, are the ones that are feeling really lousy.... and are seeking to find out why they are not feeling human despite the fact that their docs continue to say they are fine.

There are just so many variables.... Personally I would love to put the synthetics out of business... off the market... but would that be fair to those that have found it to do the job for them? Not really.... The best that we can do, I think, is to help those that come here to understand the hormones and tests and how to use that information along with what they know about their own bodies, to find what they need to be well again...

That can be more than just whether they are on a synthetic or a natural thyroid product... or if it's a generic or name brand.. it has to do with the dose, the timing of the dose (morning or night, once, twice or six times per day) the supplements that their bodies need due to dietary or physiological needs and lifestyle.... the more info that we can give them. The better understanding that we are able to guide them to.. the better informed decision each individual person can make for themselves.

Regardless of the reason... my endo told me about natural thyroid, but brought up the concerns of animal diseases and hormone treatments, I chose to go synthetic based on that.. fear of the unknown variable of using an animal product... but as time went on and I had so much trouble with the Synthroid and we started trying other brands to see if I tolerated them better, I was never, not even once, offered a natural product to see if my body could handle it....

It took two years of experimentation on all the different brands of synthetic thyroid meds to find out the only way to keep me from getting sick when I took it was that I had to use only Synthroid and I had to dose three times a day and take it with food.... Now.. think of what we know about it... I was splitting the dose and eating it with food... so the reason that I wasn't getting sick from it was because I wasn't getting enough of it into my system to do anything...

As years went by I was finally able to take it on an empty stomach... in the morning.. but didn't know that I could NOT eat right after... so, again... how much was actually getting in to my system?

As I continued to gain weight.. my dosage was never increased.. I was held at 200 mcg even though I gained nearly 150 pounds.... Yet, even the Synthroid dosing guidelines state that for a person with no thyroid function the guideline dosage is 1 mcg per pound of body weight.... that is THEIR guideline... yet I was never given any where near that...

It's so frustrating....

I wish I had access to frequent labs.. I wish many of us did.. so that we could actually have proof, black on white, of what is happening as we adjust doses and finally get to feeling "normal" it might be quite and education for the medical world..

.... end of rant... sorry... I'm getting worked up over this again.... that we, the patient, are not the first concern... when it should be us....

*sigh*

Topper ()www.thyrophoenix.com

On Sat, 23 Oct 2004 08:12:08 -0700 "Carol M. s" writes:

may now be considered hypothyroid and eligible to be diagnosed and treated.

The first thing I thought when I read this, was the Synthroid manufacturer is looking to push some more pills. What better way?

Carol M. s

[Guest guest]

I think this is a new way "in" to get treated, where a person normally would not have been, me included (5.5 TSH for over 5 yrs), but it's still moot to most of us, who now know that the TSH really has nothing to do with where the actual thyroid hormones are going to be. Reason? Because of antibodies and the fact that the pituitary can be just as awry as the thyroid is, and in fact, most of the time is, as has been proven by so many hundreds and hundreds of people on all the thyroid boards. The proof has been that they FEEL better with their OWN set of thyroid values, which, most of the time has had little or nothing to do with where their TSH is. I don't want to be overly suspicious, but I'm sort of with Carole on this, that it could be an "in" also for the wealthy pharmaceutical companies. The fact remains that it SHOULD make it more possible for people to get treated with SOMEthing, where they formerly couldn't, if they MUST turn to a doctor for treatment for thyroid disorder. The problem doesn't lie here with the AACE, though, it lies with thousands upon thousands of "ordinary" (if you want to put it that way) community doctors, who have no idea this is going on, don't want to know, or are so set in their ways, that it's like trying to train an old mule.

Re: New TSH ranges according to AACE

That may be part of it... but its also true that many folks are suffering from hypo symptoms because they are within the old 'normal' range.

The new ranges were determined more than a year ago... I posted those a while back... from that Australian site that I found.. they have the best charts and description of the testing process.... But so many of the docs and/or labs are not using the new ranges.... we see more and more members coming by that are over 3.0 and being told that they are just fine, in range, but feeling miserable...

Others that are between 2.0 and 3.0 that don't feel so hot..... and the charts are showing that more folks are at 1.25 than anywhere else within the range... if we could just get docs to realize that ... and strive for that as a goal and then tweak from there.. I think we'd have a lot fewer folks that are ending up in bed or wheelchairs... losing their jobs, their lives, their families... Many even ending up on disability when their resulting symptoms get severe enough.

[Guest guest]

I think this is a new way "in" to get treated, where a person normally would not have been, me included (5.5 TSH for over 5 yrs), but it's still moot to most of us, who now know that the TSH really has nothing to do with where the actual thyroid hormones are going to be. Reason? Because of antibodies and the fact that the pituitary can be just as awry as the thyroid is, and in fact, most of the time is, as has been proven by so many hundreds and hundreds of people on all the thyroid boards. The proof has been that they FEEL better with their OWN set of thyroid values, which, most of the time has had little or nothing to do with where their TSH is. I don't want to be overly suspicious, but I'm sort of with Carole on this, that it could be an "in" also for the wealthy pharmaceutical companies. The fact remains that it SHOULD make it more possible for people to get treated with SOMEthing, where they formerly couldn't, if they MUST turn to a doctor for treatment for thyroid disorder. The problem doesn't lie here with the AACE, though, it lies with thousands upon thousands of "ordinary" (if you want to put it that way) community doctors, who have no idea this is going on, don't want to know, or are so set in their ways, that it's like trying to train an old mule.

Re: New TSH ranges according to AACE

That may be part of it... but its also true that many folks are suffering from hypo symptoms because they are within the old 'normal' range.

The new ranges were determined more than a year ago... I posted those a while back... from that Australian site that I found.. they have the best charts and description of the testing process.... But so many of the docs and/or labs are not using the new ranges.... we see more and more members coming by that are over 3.0 and being told that they are just fine, in range, but feeling miserable...

Others that are between 2.0 and 3.0 that don't feel so hot..... and the charts are showing that more folks are at 1.25 than anywhere else within the range... if we could just get docs to realize that ... and strive for that as a goal and then tweak from there.. I think we'd have a lot fewer folks that are ending up in bed or wheelchairs... losing their jobs, their lives, their families... Many even ending up on disability when their resulting symptoms get severe enough.

[Guest guest]

I think this is a new way "in" to get treated, where a person normally would not have been, me included (5.5 TSH for over 5 yrs), but it's still moot to most of us, who now know that the TSH really has nothing to do with where the actual thyroid hormones are going to be. Reason? Because of antibodies and the fact that the pituitary can be just as awry as the thyroid is, and in fact, most of the time is, as has been proven by so many hundreds and hundreds of people on all the thyroid boards. The proof has been that they FEEL better with their OWN set of thyroid values, which, most of the time has had little or nothing to do with where their TSH is. I don't want to be overly suspicious, but I'm sort of with Carole on this, that it could be an "in" also for the wealthy pharmaceutical companies. The fact remains that it SHOULD make it more possible for people to get treated with SOMEthing, where they formerly couldn't, if they MUST turn to a doctor for treatment for thyroid disorder. The problem doesn't lie here with the AACE, though, it lies with thousands upon thousands of "ordinary" (if you want to put it that way) community doctors, who have no idea this is going on, don't want to know, or are so set in their ways, that it's like trying to train an old mule.

Re: New TSH ranges according to AACE

That may be part of it... but its also true that many folks are suffering from hypo symptoms because they are within the old 'normal' range.

The new ranges were determined more than a year ago... I posted those a while back... from that Australian site that I found.. they have the best charts and description of the testing process.... But so many of the docs and/or labs are not using the new ranges.... we see more and more members coming by that are over 3.0 and being told that they are just fine, in range, but feeling miserable...

Others that are between 2.0 and 3.0 that don't feel so hot..... and the charts are showing that more folks are at 1.25 than anywhere else within the range... if we could just get docs to realize that ... and strive for that as a goal and then tweak from there.. I think we'd have a lot fewer folks that are ending up in bed or wheelchairs... losing their jobs, their lives, their families... Many even ending up on disability when their resulting symptoms get severe enough.