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Free T3 Test No Good?
I recently saw a new doctor, an endocrinologist, who says she hates the Free T3 test because the results are always skewed due to the "acid used in the test"???? She put me on Tirosint and my body is now whacked out. I was on Naturethroid with a little Synthroid added, but was still feeling hypo. She wanted me on Tirosint because it has no fillers and I have Celiac, so poor absorption. She wants me on the present dose for 3 weeks and then she will test. But she is not testing the Free T3. I have never been one to do well on T4 only, always had low FT3 and mid-range FT4 with a nearly suppressed TSH. She wants my TSH at .8. I feel hyper in the afternoon for about 2 hours with horrible leg cramping pain along with a terrible attitude. Cry at everything. Very angry. Not normal for me at all. I just don't know if I can stay on this for another 3 weeks. I am trying to determine if I should even go back to her and was really wondering if anyone had ever heard any doctor say the Free T3 test was a bad test, and if anyone had ideas as to whether or not the body will get used to the Tirosint so that I can be somewhat normal again.
No, you shouldn't accept that. You'll find what works for you. It might be time to retest RT3 to make sure it's gone down since your FT4 went down a bit.
My primary ran a rt3 and of course it was high. With the T4 having spiked, I would expect that. I am now just taking the 100 MCG Tirosint plus 1 grain and at least my mood is somewhat better. But I feel cold, constipated, no energy, low temp, so I know I have gone hypo, no matter what my numbers say. All I can do is stay on this and see what the numbers are in 3 weeks. If my TSH is still suppressed, I will insist on a ft3 from my primary. I am very tired of trying to feel decent. Perhaps it is time to accept that I won't.
I am sorry about what your wife is going through, flyingfool. You may be correct about this new line of thinking by endos. It is very frustrating for patients, to say the least.
I am sorry about what your wife is going through, flyingfool. You may be correct about this new line of thinking by endos. It is very frustrating for patients, to say the least.
Have you researched RT3 dominance and had RT3 tested? High FT4 can trigger an RT3 dominance response.
My wife is somewhat in the same boat.
her last Endo added T3 to her T4 med. She FINALLY started to improve markedly.
BUT then that endo retired.
New Endo was assigned. She is about mid thirty to maybe 40 years old. TOTALLY against T3 and totally in love with TSH.
My wifes TSH also suppressed. Endo did NOT believe that Ft4 and FT3 are good tests. her logic is that these test at such small units of parts per liter or whatever that it makes the test unreliable and touchy. I mentioned that TSH varies 70% in a day, so how is that any better test? While the FT4 test in particular was absolutely rock solid steady for nearly 2 years with no change in my wife's T4 dosage.
Anyhow the result is that the endo reduced her T3 dosage. My wife just got TSH test aganin and still suppressed and the endo recommended (orderd) my wife to stop taking ALL the T3.
Meanwhile my wife has already been feeling worse as a result of the lowering of the T3 to the point even our oldest daughter noticed my wife (her mom) mood was terrible. Also other symptoms of hypo.
Now my wife will have to "prove" to the endo by going into hypo hell by the reduction of the T3.
I/we are so upset I can't stand it. This endo has completely vaporized any gain my wife has made for about 2 years!
You started out this post asking if youn've heard from a Dr saying that the FT 3 and Ft4 test are unreliable. And that is exactly the same thing we have been told. By a Endo that appears to be about the same age as your endo. Although for a separate reason. It appears this may be the med school teaching ideology thing.
These med schools are keeping THOUSANDS of people feeling like crap as a result. It makes me mad as heck!
her last Endo added T3 to her T4 med. She FINALLY started to improve markedly.
BUT then that endo retired.
New Endo was assigned. She is about mid thirty to maybe 40 years old. TOTALLY against T3 and totally in love with TSH.
My wifes TSH also suppressed. Endo did NOT believe that Ft4 and FT3 are good tests. her logic is that these test at such small units of parts per liter or whatever that it makes the test unreliable and touchy. I mentioned that TSH varies 70% in a day, so how is that any better test? While the FT4 test in particular was absolutely rock solid steady for nearly 2 years with no change in my wife's T4 dosage.
Anyhow the result is that the endo reduced her T3 dosage. My wife just got TSH test aganin and still suppressed and the endo recommended (orderd) my wife to stop taking ALL the T3.
Meanwhile my wife has already been feeling worse as a result of the lowering of the T3 to the point even our oldest daughter noticed my wife (her mom) mood was terrible. Also other symptoms of hypo.
Now my wife will have to "prove" to the endo by going into hypo hell by the reduction of the T3.
I/we are so upset I can't stand it. This endo has completely vaporized any gain my wife has made for about 2 years!
You started out this post asking if youn've heard from a Dr saying that the FT 3 and Ft4 test are unreliable. And that is exactly the same thing we have been told. By a Endo that appears to be about the same age as your endo. Although for a separate reason. It appears this may be the med school teaching ideology thing.
These med schools are keeping THOUSANDS of people feeling like crap as a result. It makes me mad as heck!
Nothing. I think I was hyper, I felt somewhat hyper but not a bad hyper except that I started losing my hair. I took my temp religiously every morning and it started dropping. Hair was coming out in handfuls. Labs were very close to the same. When the hair loss got so prominent other people noticed loose hair all over my back and the shower was clogging because of it, I chopped it off. By then I had begun gaining weight rapidly. I was a wreck emotionally, crying every day for the stupidest things. My primary said we needed to drop my NT dose. I dropped it to 2 grains and we added the synthroid. T4 went up, T3 went down. Still in upper part of range and T4 over range. Emotions crazy. Now at 1 grain and 100 MCG Tirosint since about a week and a half ago. Weight coming on still, temp low, but if I take any more of anything I get extremely agitated and the crying starts. No "events". Just one day I started feeling like I had "lost my happy" and it all started spiraling down. Iwill be doing labs in aabout two weeks to see where I am now in the ranges, but I have been at a suppressed TSH since I first started T4 and like I said, my numbers have to be very low in range for the TSH to budge and when it does it shoots up to around 3 or higher.
I'm on my way to Eugene this morning...my in-laws are there.
Your TSH is suppressed by the meds. Some people have TSH go down to zero immediately upon starting any meds. Meds with T3 in them seem to exacerbate that response. You just have to ignore it and get your doctor to do the same.
You can't think of any "event" that happened around the time your NT stopped working? Had your labs dropped? Was it close to when you added the T4 to your NT?
Your TSH is suppressed by the meds. Some people have TSH go down to zero immediately upon starting any meds. Meds with T3 in them seem to exacerbate that response. You just have to ignore it and get your doctor to do the same.
You can't think of any "event" that happened around the time your NT stopped working? Had your labs dropped? Was it close to when you added the T4 to your NT?
I live near Eugene. My absorption is good now. Before I started the NT, I was very low on D and B12, but I got those up. B12 is in the 800s and D3 is above 50. And my iron levels (nutritional status levels) are excellent. Cortisol levels have been checked and seem to be a little low on the curve, but not a lot low. The testing was saliva.
When I was on NT alone, my free T4 was right in the middle of mid-range and high and my Free T3 was at the very highest of the range. A couple of times it did go over, but I think that was more a matter of when I took the pills and when I got the blood draws because I didn't feel hyper at all. My primary wanted me to try adding some T4 because I was losing my hair and had problems with emotional issues after 6 months on the dose where I felt good. My numbers were about the same when she added the T4, but after adding it and on it for 4 weeks, my Free T4 was way up above the normal and my Free T3 had dropped. I felt very hypo. My temp had become stabilized at 98.6 while on the NT, but then it started dropping again. That also prompted her to add the T4. My TSH stayed suppressed during all of it at 0.02.
I have had FT4 at mid-range with FT3 below mid-range and still had a totally suppressed TSH. The only time my TSH has ever risen (it went to 3.84) was when both numbers were bottomed out and I felt like I was going to die I was so severely hypo. That was when I was first started on NT and the doctor didn't know how much to put me on. She started me at 1/4 grain. After 2 weeks I told her we had to raise it. Slowly I got the amount up to 3 1/2 grains (it took nearly 6 months) and was great on that for about 6 months and then wham. It just seemed to quit working. I had dropped 25 pounds very easily on the NT and now I have gained it all back.
I can't seem to raise the Tirosint because I get horrible leg pain and shaking of my hands, as well as severe depression symptoms if I do. I mean crying at everything and not being able to stop. I feel pretty hopeless right now. I've been on an emotional roller coaster for the last two years and my entire life has revolved around internet research on what "might" work. My last hope is these kinds of forums for ideas because I have tried just about everything I can think of. Doctors just have not been able to help me. The worst thing that ever happened to me was having my thyroid removed. Thanks for your opinions. It helps to know others are out there willing to try and give some insight.
When I was on NT alone, my free T4 was right in the middle of mid-range and high and my Free T3 was at the very highest of the range. A couple of times it did go over, but I think that was more a matter of when I took the pills and when I got the blood draws because I didn't feel hyper at all. My primary wanted me to try adding some T4 because I was losing my hair and had problems with emotional issues after 6 months on the dose where I felt good. My numbers were about the same when she added the T4, but after adding it and on it for 4 weeks, my Free T4 was way up above the normal and my Free T3 had dropped. I felt very hypo. My temp had become stabilized at 98.6 while on the NT, but then it started dropping again. That also prompted her to add the T4. My TSH stayed suppressed during all of it at 0.02.
I have had FT4 at mid-range with FT3 below mid-range and still had a totally suppressed TSH. The only time my TSH has ever risen (it went to 3.84) was when both numbers were bottomed out and I felt like I was going to die I was so severely hypo. That was when I was first started on NT and the doctor didn't know how much to put me on. She started me at 1/4 grain. After 2 weeks I told her we had to raise it. Slowly I got the amount up to 3 1/2 grains (it took nearly 6 months) and was great on that for about 6 months and then wham. It just seemed to quit working. I had dropped 25 pounds very easily on the NT and now I have gained it all back.
I can't seem to raise the Tirosint because I get horrible leg pain and shaking of my hands, as well as severe depression symptoms if I do. I mean crying at everything and not being able to stop. I feel pretty hopeless right now. I've been on an emotional roller coaster for the last two years and my entire life has revolved around internet research on what "might" work. My last hope is these kinds of forums for ideas because I have tried just about everything I can think of. Doctors just have not been able to help me. The worst thing that ever happened to me was having my thyroid removed. Thanks for your opinions. It helps to know others are out there willing to try and give some insight.
Where do you live? I'm in Sisters.
Have you had vitamin and mineral levels tested? Intake may be excellent, but absorption might be inadequate. As with thyroid test ranges, just being "in range" on vitamins/minerals is often insufficient.
Not all endos are good thyroid doctors. Many have no interest in anything but diabetes. FT3 is not an esoteric test...she is a waste of time.
My list is just a few of the things that can make it seem like the NT worked at first and then seemed to quit working.
Do you have labs to post just prior to the switch from NT/Synthroid?
Have you had vitamin and mineral levels tested? Intake may be excellent, but absorption might be inadequate. As with thyroid test ranges, just being "in range" on vitamins/minerals is often insufficient.
Not all endos are good thyroid doctors. Many have no interest in anything but diabetes. FT3 is not an esoteric test...she is a waste of time.
My list is just a few of the things that can make it seem like the NT worked at first and then seemed to quit working.
Do you have labs to post just prior to the switch from NT/Synthroid?
My endo is late 30s to early 40s and is assistant professor at OSHU. No changes with health or lifestyle and vitamin intake is excellent. Yes, there can be antibodies to hormones but doctors don't check much because they think it is rare and so costly to run the tests that many insurance companies won't pay. No placebo effect possibility. I switched to NT hopeful but doubtful it would work. Was happily surprised when it worked as well as it did. I will just have to keep researching on my own and hope for a doctor who actually understands the physiology of the human body. A doctor who won't use good testing is a waste of my time. Thank you for your insight.
I can see her logic to some extent. 2.5 grains is roughly 92.5 T4 and 22.5 T3. Convert that T3 number to a T4 number using 1:4, and it's 92.5 + 90.
I'm assuming your TPOab is a bit elevated due to the other antibodies you've tested positive to, Ro and SSdna. Didn't I also read somewhere that you have celiac? TPOab is not an antibody to the hormones or to the receptors. It's an antibody to thyroid peroxidase, which is the enzyme that catalyzes the chemical reaction that makes thyroid hormone. As far as I know, there is no antibody that attacks the hormones themselves or the receptors. TPOab does not affect exogenous hormones. Once your thyroid is in effect dead or gone (from surgery, RAI or disease), TPOab really becomes moot.
"Why else could the hormones work great at first and then quit working?" A multitude of reasons, among them, but not limited to: absorption issues, vitamin and/or mineral deficiencies that can stop thyroid hormones from getting into your cells, stress (physical of psychological), aging, life style changes, trauma, general health, other meds and/or supplements, the placebo effect, etc., etc. I could write a book...
FT3 is a good test. Many years ago (how old is your doctor approximately?), there was no real reliable way to test FT3. Things change. In the 21st century, there is a reliable test. Some doctors just don't keep up...
I'm assuming your TPOab is a bit elevated due to the other antibodies you've tested positive to, Ro and SSdna. Didn't I also read somewhere that you have celiac? TPOab is not an antibody to the hormones or to the receptors. It's an antibody to thyroid peroxidase, which is the enzyme that catalyzes the chemical reaction that makes thyroid hormone. As far as I know, there is no antibody that attacks the hormones themselves or the receptors. TPOab does not affect exogenous hormones. Once your thyroid is in effect dead or gone (from surgery, RAI or disease), TPOab really becomes moot.
"Why else could the hormones work great at first and then quit working?" A multitude of reasons, among them, but not limited to: absorption issues, vitamin and/or mineral deficiencies that can stop thyroid hormones from getting into your cells, stress (physical of psychological), aging, life style changes, trauma, general health, other meds and/or supplements, the placebo effect, etc., etc. I could write a book...
FT3 is a good test. Many years ago (how old is your doctor approximately?), there was no real reliable way to test FT3. Things change. In the 21st century, there is a reliable test. Some doctors just don't keep up...
She figured that 2 1/2 grains was equal to about 180 MCG T4 (one grain equivalent to 75 MCG T4) and then she added in the 60 Synthroid. Because the Tirosint is absorbed better, she felt 200 would work out. I must have converted it because I got so hyper. No, I wasn't doing "good" on the 2 1/2 NT and 60 T4. Gaining weight, cold, low temp. I did verywell on it at first but then it seemed to just quit working.
If TPO is associated with other autoimmune diseases, why would I not be concerned if it went high? Last test a year ago was 3. Now at 29. I just can't help but think I have antibodies to the hormones or to receptors somewhere. Why else could the hormones work great at first and then quit working?
I had never heard anyone before say the ft was a bad test so I wanted to know what others had heard. I don't think this new doctor is going to help me. Getting FT3 tested is imperative as far as I am concerned. I understand total will tell me if I convert but it won't tell me how much is usable.
Thanks for your thoughts.
If TPO is associated with other autoimmune diseases, why would I not be concerned if it went high? Last test a year ago was 3. Now at 29. I just can't help but think I have antibodies to the hormones or to receptors somewhere. Why else could the hormones work great at first and then quit working?
I had never heard anyone before say the ft was a bad test so I wanted to know what others had heard. I don't think this new doctor is going to help me. Getting FT3 tested is imperative as far as I am concerned. I understand total will tell me if I convert but it won't tell me how much is usable.
Thanks for your thoughts.
TPOab can be somewhat elevated with other autoimmune diseases as well. TPOab isn't a concern after RAI.
FT3 is the only way to see the available T3. Did she determine that you were "converting properly" from your TT3? Were you on meds at that time?
200 mcg Tirosint plus 0.5 gr NT was a considerable increase in your T4 intake. However, you also had a huge decrease in your T3 intake. I'd usually suggest that if a doctor changed your meds that you should go back to what was working for you. However, on 2.5 gr NT and 60 mcg levo, you still had hypo symptoms. So, apparently, that wasn't really working for you, either.
FT3 is the only way to see the available T3. Did she determine that you were "converting properly" from your TT3? Were you on meds at that time?
200 mcg Tirosint plus 0.5 gr NT was a considerable increase in your T4 intake. However, you also had a huge decrease in your T3 intake. I'd usually suggest that if a doctor changed your meds that you should go back to what was working for you. However, on 2.5 gr NT and 60 mcg levo, you still had hypo symptoms. So, apparently, that wasn't really working for you, either.
I was taking 2 and half grains NT and 60 mcg Synthroid. The NT was too much T3 for me, so my primary added a little T4 to it. I only went to to the endo because I did great when I first switched to the NT for about 6 months, and then I went hypo again. It was like it just quit working. This was after 20 some odd years of no luck with T4 only or with adding synthetic T3 to that. So my primary sent me to an endo. My primary believes that TSH should always be suppressed when treating with hormones, or you don't have enough hormone. The endo wants my TSH in the range of 0.5 to 0.8 to see how I feel after 6 months at that level. She said a totally suppressed TSH all the time will have an effect on other systems and so we don't want it suppressed. She's not saying she will dose only by TSH, but she does really believe that it is a good test for determining dosage. I've had mid-range T4 and barely above mid-range T3 and my TSH was totally suppressed at 0.03. I did not feel hyper, in fact, I felt hypo. I've also had my TSH at 3.84 when the fT4 was mid range and the fT3 was barely below mid range. I was severely hypo then. My TSH seems to go all over the place with no rhyme or reason.
Anyway, this endo put me on 200 mcg Tirosint at first, along with a half grain, because I told her I wasn't going without any T3 and wasn't going to take the synthetic T3 because it didn't work in the past and it could have gluten. She agreed with doing that. When I took the 200 mcg I went so hyper I was sick. Hadn't felt like that since I had pre RAI untreated Graves. So she put me down to 150 mcg and I still feel terrible. I've never had such bad leg pain and cramping as I have on this. I am now okay taking 100 mcg with a grain of NT taken at a different time (I spread it out over the day), but I don't feel "right". I haven't told the endo I lowered it yet.
I have Ro antibodies, and SSdna antibodies, my last peroxidase test was at 29 with <35 being "normal".
I've just never heard any doctor ever say that the free T3 was not a good test. How else can you see what is unbound? She said a T3 total will tell you if you are converting the T4 properly and that is what she needed to know.
Anyway, this endo put me on 200 mcg Tirosint at first, along with a half grain, because I told her I wasn't going without any T3 and wasn't going to take the synthetic T3 because it didn't work in the past and it could have gluten. She agreed with doing that. When I took the 200 mcg I went so hyper I was sick. Hadn't felt like that since I had pre RAI untreated Graves. So she put me down to 150 mcg and I still feel terrible. I've never had such bad leg pain and cramping as I have on this. I am now okay taking 100 mcg with a grain of NT taken at a different time (I spread it out over the day), but I don't feel "right". I haven't told the endo I lowered it yet.
I have Ro antibodies, and SSdna antibodies, my last peroxidase test was at 29 with <35 being "normal".
I've just never heard any doctor ever say that the free T3 was not a good test. How else can you see what is unbound? She said a T3 total will tell you if you are converting the T4 properly and that is what she needed to know.
FT3 is a very reliable test. Most doctors were taught in med school that T3 wasn't important. They were told to adjust T4 meds and "T3 would take care f itself automatically". Famous last words...
If all she cares about is your TSH being at 0.8, she is going to keep you sick, sick, sick.
It does take some time to transition from NT to Tirosint. The T3 in NT is out of your system quickly, while the T4 in Tirosint hasn't had time to build yet. So, you end up in a no man's land until the T4 catches up.
It's impossible to say how you will do on Tirosint. Unfortunately, we all have to be our own guinea pigs and see what works for each of us individually.
That being said, I'd cut my losses and run away from this doctor.
How much NT were you on, and how much Tirosint now?
If all she cares about is your TSH being at 0.8, she is going to keep you sick, sick, sick.
It does take some time to transition from NT to Tirosint. The T3 in NT is out of your system quickly, while the T4 in Tirosint hasn't had time to build yet. So, you end up in a no man's land until the T4 catches up.
It's impossible to say how you will do on Tirosint. Unfortunately, we all have to be our own guinea pigs and see what works for each of us individually.
That being said, I'd cut my losses and run away from this doctor.
How much NT were you on, and how much Tirosint now?
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