13th April 2007
Welcome to the board. You have lots of issues to address. I'll try to help.
First of all, when it comes to thyroid treatment, absolutely nothing is set in stone. All of us who have Hashi's/hypo can recover if we're lucky enough to find an MD or DO who is open-minded and knows nothing is set in stone. The problems come when MDs strictly believe that Synthroid alone works, that people never need additional T3, that TSH is the absolute governor of thyroid needs, and that symptoms can't possibly occur until TSH reaches 10 or higher. All of these are fallacies. My hope is that someday they'll be proven fallacies... much the same way as stomach ulcers have been proven not to be caused by stress and spicy food, but by a bacterium.
The American Assn of Clinical Endos issued a statement several years ago, and keeps reiterating it at their annual gathering, that lab ranges should be uniformly changed to reflect a narrower range of .3-3.0, because the outdated ones have been shown to include people with occult thyroid disease. The National Academy of Clinical Biochemistry says that TSH above 2.5 probably indicates hypothyroidism worthy of a trial of hormone for most of the population. It's their belief that lab ranges will eventually be changed to reflect that. It's the hope.
The MDs who told you that a 5.5 TSH is the high end of normal are right as far as it goes. What they haven't told you - because they may be ignorant of it themselves - is that every person has a TSH that's "normal" for that person, and anything higher or lower affects the thyroid hormone levels [TSH is a pituitary hormone.] and thus produces symptoms. You have a specific "normal" TSH within its range just as you have a specific shoe size within the "normal" women's range. You wouldn't be comfortable in a 10 if you actually wear a 6. Same goes for TSH.
Treatment guidelines are not set in stone, either. If you interviewed 12 MDs, you'd likely find at least 6 different points of view on the matter. The "target" TSH of 1 or 2 is not something that has been taught to these MDs; it's just a reasonable goal given the fact that the majority of people without thyroid disease have such a TSH. The goal should be euthyroidism, and that TSH range has been shown to be euthyroid in the general population. It's reasonable.
Also, TSH should not be the sole criterion for treatment. It's an indirect indicator of thyroid health... a pituitary hormone. Far more important are the actual thyroid hormones, the portions unbound to carrier protein which are known as free T4/free T3. Once treatment starts, the goal ought to be to raise these hormones, not to lower the TSH. The fact is that TSH is very responsive to minute changes in body chemistry, and TSH can easily be lowered without affecting the free Ts at all. Really smart MDs know this. The fact that your FT4 was abysmally low should absolutely be addressed. It's far more important than TSH; so is FT3, which ought to be measured as well.
Really smart MDs also know that T3 matters as much as T4. LevoT drugs contain only T4, but sometimes people don't convert T4 well enough to T3, or their cells aren't as receptive to it as they should be. Some people simply require additional T3 as well as T4.
Three major endocrine societies have issued a joint statement that says even though levoT products are theoretically equivalent, that people who have stabilized on one product should not be forced to switch and should be encouraged to stick with the one that works. Even though all levos appear identical in laboratories, patients' bodies are an altogether different thing. Absorption and effectiveness rates are vastly different one person to another.
You're correct to think that each time your pharmacy changes generic products, you will get a different result from your refills. I share your concern at the price-gouging the makers of Synthroid are guilty of; but you really should compare prices of the other name brands, such as Levoxyl, Unithroid, or Levothroid... choose one and stick to it.
So, my suggestions... Find a doctor who will treat according to your free Ts; and find an acceptably-priced name brand of levoT and stick to it. Also, be sure that your MD will agree to a trial of a T3 drug if the T4 does not eradicate all of your symptoms and restore wellness.
Swhew... That was a mouthful. Hope it helped!
First of all, when it comes to thyroid treatment, absolutely nothing is set in stone. All of us who have Hashi's/hypo can recover if we're lucky enough to find an MD or DO who is open-minded and knows nothing is set in stone. The problems come when MDs strictly believe that Synthroid alone works, that people never need additional T3, that TSH is the absolute governor of thyroid needs, and that symptoms can't possibly occur until TSH reaches 10 or higher. All of these are fallacies. My hope is that someday they'll be proven fallacies... much the same way as stomach ulcers have been proven not to be caused by stress and spicy food, but by a bacterium.
The American Assn of Clinical Endos issued a statement several years ago, and keeps reiterating it at their annual gathering, that lab ranges should be uniformly changed to reflect a narrower range of .3-3.0, because the outdated ones have been shown to include people with occult thyroid disease. The National Academy of Clinical Biochemistry says that TSH above 2.5 probably indicates hypothyroidism worthy of a trial of hormone for most of the population. It's their belief that lab ranges will eventually be changed to reflect that. It's the hope.
The MDs who told you that a 5.5 TSH is the high end of normal are right as far as it goes. What they haven't told you - because they may be ignorant of it themselves - is that every person has a TSH that's "normal" for that person, and anything higher or lower affects the thyroid hormone levels [TSH is a pituitary hormone.] and thus produces symptoms. You have a specific "normal" TSH within its range just as you have a specific shoe size within the "normal" women's range. You wouldn't be comfortable in a 10 if you actually wear a 6. Same goes for TSH.
Treatment guidelines are not set in stone, either. If you interviewed 12 MDs, you'd likely find at least 6 different points of view on the matter. The "target" TSH of 1 or 2 is not something that has been taught to these MDs; it's just a reasonable goal given the fact that the majority of people without thyroid disease have such a TSH. The goal should be euthyroidism, and that TSH range has been shown to be euthyroid in the general population. It's reasonable.
Also, TSH should not be the sole criterion for treatment. It's an indirect indicator of thyroid health... a pituitary hormone. Far more important are the actual thyroid hormones, the portions unbound to carrier protein which are known as free T4/free T3. Once treatment starts, the goal ought to be to raise these hormones, not to lower the TSH. The fact is that TSH is very responsive to minute changes in body chemistry, and TSH can easily be lowered without affecting the free Ts at all. Really smart MDs know this. The fact that your FT4 was abysmally low should absolutely be addressed. It's far more important than TSH; so is FT3, which ought to be measured as well.
Really smart MDs also know that T3 matters as much as T4. LevoT drugs contain only T4, but sometimes people don't convert T4 well enough to T3, or their cells aren't as receptive to it as they should be. Some people simply require additional T3 as well as T4.
Three major endocrine societies have issued a joint statement that says even though levoT products are theoretically equivalent, that people who have stabilized on one product should not be forced to switch and should be encouraged to stick with the one that works. Even though all levos appear identical in laboratories, patients' bodies are an altogether different thing. Absorption and effectiveness rates are vastly different one person to another.
You're correct to think that each time your pharmacy changes generic products, you will get a different result from your refills. I share your concern at the price-gouging the makers of Synthroid are guilty of; but you really should compare prices of the other name brands, such as Levoxyl, Unithroid, or Levothroid... choose one and stick to it.
So, my suggestions... Find a doctor who will treat according to your free Ts; and find an acceptably-priced name brand of levoT and stick to it. Also, be sure that your MD will agree to a trial of a T3 drug if the T4 does not eradicate all of your symptoms and restore wellness.
Swhew... That was a mouthful. Hope it helped!