Generic vs. Brand in Elevated TSH

jaliriley · 04-13-2007, 07:18 AM

I am female, 41 and was diagnosed at 39 in a screening for recent unexplained weight gain. In retrospect the other symptoms were present but I was under a lot of stress at the time and didn't put 2+2 together. I was started on meds and quickly stabilized (or so I was told) until today when I was told my TSH was elevated again. Up until today I had never really paid much attention to my thyroid and just figured I would take meds and be re-checked annually. I have a medical background and although it is rusty I have the foundation of understanding the basics of my hypothyroidism. It seems that what I was taught and told by my PCP differ greatly from what I have been reading today. I feel like such an idiot because I am usually very proactive in my healthcare and I am clearly symptomatic and just haven't realized it. Now I have a million questions and am realizing that this is going to fall on me to decipher if I am going to be treated optimally.

First, I have always thought and been told by two different PCP's that 5.5 was the high range of normal. Is 3 the curent standard or is it he current UNOFFICIAL standard by those who are up to date?

Second, I was never told that a target TSH of 1-2 was the goal. Mine has never been below 2.1 but then again I have never complained of symptoms either.

This is the progression of my labs:

2/2005 Free T4 (Thyroxine) 0.9 (0.8-1.8)
TSH 7.32 (0.4-5.50)

Placed on Synthroid 75 mcg daily

4/2005 TSH still elevated

Synthroid increased to 100 mcg daily

6/2005 TSH supposedly normal

Synthroid unchanged

11/2005 TSH 2.15 (.35-5.5)

Synthroid switched to generic Levothyroxin 100 mcg
(at my request for $ savings)

1/2006 TSH still normal on generic

Continued Levothyroxin 100 mcg

12/2006 TSH 2.68

Continued Levothyroxin 100 mcg

2/2007 Changed from mail order pharmacy to Walmart

4/2007 Gyne work-up for irregular bleeding included TSH

TSH 5.81 (.3-5.5)

I am also very symptomatic worse than when I was diagnosed (again I didn't put 2+2 together

) with extreme fogginess, spaciness, dry hair and skin etc. I guess I need to learn to listen to my body more!

PCP called and wants to increase Levothyroxin to 112 mcg

This sounds reasonable but before I get too much further timewise into my disease I want to educate myself.

1. Should I have had further diagnostic testing done before or should I now before I just settle for a "simple" case of hypo based on elevated TSH?

2. My one and only Free T4 seemed awfully low upon diagnosis. Should that be repeated?

3. Do you think my sudden increase in TSH could be due to the discrepancy between generic brands not being as well regulated? How big of a problem is this?

4. Should I just go back on a brand name? I know Synthroid is the gold standard but I have heard that it is overpriced and the others are just as good. Any suggestions?

I was just thinking that if every time I get a refill on a generic I am never going to know for sure who the manufacturer is then I will never be sure I'm getting the same dose as the month before. Should I just ask him to switch me to 112 mcg of a brand name and and recheck my TSH in 2 months?

midwest1 · 04-13-2007, 01:59 PM

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!

vickie45 · 04-13-2007, 08:31 PM

Quote:

Originally Posted by midwest1

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!

yes it was im going to post my labs and what my internal medicine dr has said and done with mine but i'll post later cause i have alot of stuff to say about my symtons and im currently changing internal medicine drs and i only saw this one dr 1 time and he says he retests twice a yr and i started on levothyroxine 25 mcgs then when i was about out he had me take 2 which made it 50mcgs then switched me to synthyrold and they do not work as well all my symtons have come back the depression the sleepiness i have no energy and when i took the 2 pills of levothyroxine i felt tons better i hardly had any aneity at al and thyriold disorder runs in my family too me my 1 sister and 2 brothers and my dad had high aneity.but i'll post my labd in a bit my kids want the computer for now i will have more time later will it hurt if i went back to taking 2 ,25mcgs of the levothyroxines untill i see my new dr next week? drug store says i will be fine doing this and if they helped me better then i want what makes me feel better i took synthyrold for 5 weeks and i still dont feel good but im taking 2 of the 25mcgs tomorrow untill i see my new dr .any advice on this my last tsh was 2.58 and tt4 was 1.2 but he says im within normal range but i sure dopnt feel like it and he wants to only retest me 2 times a yr so i found a new dr.
vickie

jaliriley · 04-14-2007, 12:14 AM

Thank you so much midwest1! That was a good place to start. I found out today that I had a new FT4 drawn last week too but the results aren't in yet. I'll be curious to see Monday if it has changed since 2/2005. You mentioned it being abysmally low in 2/2005. I'm confused I thought it was low normal at 0.9 (0.8-1.8). What is a good level? or should I just be shooting to be asymptomatic and not worry about labs so much? I also got a book from the library- Thyroid Disorders from the Cleveland Clinic published in 2006. I'm sure I'll have lots of questions after I read it!

midwest1 · 04-14-2007, 11:22 AM

Quote:

Originally Posted by jaliriley

I'm confused I thought it was low normal at 0.9 (0.8-1.8). What is a good level? or should I just be shooting to be asymptomatic and not worry about labs so much?

Most of the newbies who come here with a brand-new diagnosis have FT4 levels within range, but just barely... like yours. In the time I've been a member, I've seen only 2 or 3 people whose FT4 was actually below range. You can see how out-of-range labs don't have to be the criteria for thyroid conditions. There are degrees of abnormal, guess you could say.

Many folks with FT4 below the middle-range - 1.3 at your lab - will have at least some symptoms. When it's near the bottom of the range, they might have many symptoms. But you're absolutely right that successful treatment shouldn't hinge completely on labs. They should be used more as a guide. I'm a case in point: I consider myself to be optimally treated for a couple of years. My thyroid-related symptoms are gone. My TSH is suppressed, my FT4 is only about 22% of its range (low by the above-named standard) and FT3 is about 70%. I feel fine this way. Apparently the good FT3 level is picking up the slack for the lowish FT4.

A good thyroid primer is Thyroid for Dummies by Dr. Alan Rubin, if you need basic information, terminology, etc... that's the book for you. Borrow it from your library before buying it, though, to make sure the info isn't too basic, given the background you mentioned.