Is FT3 inaccurate/unreliable?

[flyingfool]

my wife had seen an endo a few months back. And the endo fought me on the whole FT3 and what not. Anyway one of the things that this endo stated was that the FT3 test was unreliable.  And that it was mostly due to the extremely small units or parts per million etc that were actually tested. Being such a small sample, the numbers counted within that extremely small sample were therefore more suspect to varibility.

I disagree.  But....

Yesterday I had a Dr appt with a PCP. And we of course got into a discussion of thyroid.  And what I found interesting is that this PCP also said almost EXACTLY the same thing. Nearly word for word and that the bottom line is that the FT3 test is unreliable and highly variable.

I found this interesting. As it appears to me that this nearly identical response just seemed "too programmed" of a response.  Such that it appears to have been trained or "indoctrinated" into them.

Has anyone else run into this situation?

I was able to get the PCP to test my TSH and FT4 but I was unable to talk him into the FT3 test.

This PCP was encouraging in that HE actually brought up Armour but then stated that even when a patient is on Armour that they only test TSH and FT4 because of the unreliable nature of the FT3 test.

Now we have been tracking every lab test on my wife for years.  And she was on a combination of both synthetic T4 and T3 and have had a few of the tests during the short time she was able to be on this medication (end retired and new endo removed ALL T3 but that is another story on another thread!)  

Anyhow the lab results trend PERFECTLY track what one would expect.  The was on a constant dose of T4 and her FT4 remained very stable.  AND as the T3 dosage was increased the FT3 levels increase and her symptoms decreased.

So what the heck is so "unreliable" or "variable" about this response??

My wife did have one test that was VERY high FT3 but that was because my wife didn't expect to be tested for Thyroid and had taken her T3 prior to the test. Her old Endo recognized this and dismissed the test.  but the rest seemed to track.

Then when the T3 was held steady, and my wife was able to convince her PCP to increase her T4, the FT4 did almost nothing and her FT3 decereased a little but not a huge drop.

All of this to me indicates that the FT3 test is at least pretty darn consistent to show a trend and be about exactly what a person would expect.

Where the heck are "they" getting this FT3 is a no good test from?????????

[flyingfool]

We may give the Dr I swa recently that I mentioned on my original post up top.  He too didn't believe in the FT3 test. But he did on his own mention Armour and he seemed like he really listens to his patients. And he seemed sympthetic to my wifes situation and even kind of had a body language reaction sort of like rolling of his eyes sort of thing in amazement that my wifes Dr would not respond to my wife telling them she felt worse with a reduction and then removed the T3 entirely.  

So he is in our HMO and still on insurance. So it may be worth an office visit so see what he has to say.  Outside of that we need to make some phone calls and possibly to a particular Dr who Gimel mentioned in my hometown that is in another HMO.  Annually with my work we can change HMO's in an open enrollment period, so if we think that Dr is a go we will just have to switch HMO's.  But that would become effective in January.  so another 5 long months to wait.

Today is my wife & I 24th wedding anniversary. And her present today so far was a dismissive Dr. who didn't even listen to her saying that she feels like crap.  How depressing!

My wife has admitted that she is starting to feel depressed. But she know she can't admit that to the Dr's as they will start handing out anti-dpressants instead of treating her undermedicated thyroid condition whic she KNOWS is the problem.

[Barb135]

And I thought the Air Force was playing on the bombing range again!!

It's obvious you aren't going to get anywhere with this clinic, so yes, it's time for doctor shopping.

[flyingfool]

Well my wife called the Dr.

The Endo would NOT give my wife T3.  And stated that the entire clinic does not believe in dessicated thyroid.

Also when stating that she felt like crap they completely ignored her.  When she stated that the FT3 was BELOW range, they completely dismissed the test as it is unreliable!

My wife is on 150 mcg T4 only.  The Dr. upped her dose to take one extra pill a week which averages out to an increase of 21.4 mcg a day for what will now average out to about 171 mcg a day.

My wife has shown very poor response to T4 only.

So it looks like we will be looking for a new Dr starting today!!!!

This is absolute nonsense insanity!

My head just exploded!

[flyingfool]

Wife's total tests came back from the June 23 blood test.

FT3 took a LONG time to show up on line.

TSH 2.31 (0.465-4.68)
FT4 0.86 (0.78-2.19) 5.7% of range
FT3 2.45 (2.77-5.27) 12.8% BELOW RANGE!

Now what the heck is the Endo going to say about this?

My wife feeling like crap and only 6% of the range and BELOW range on the active hormone FT3 range!  With the TSH just about "perfect" from the immaculate TSH belief Endo!!!!

My wife will be calling the Dr's office back this afternoon. So we shall see what comes of this.

I cannot see how they could conceivably deny giving my wife back T3 (cytomel).  If they don't you may hear my head explode from wherever you are located in the world!

Can you sue a Dr. for malpractice for being negligent for something like this?

[Barb135]

There really isn't a whole lot I can say here... Your wife has to decide how much she can/will endure.  I know, I, for one, would not have put up with what she has, for this long.  She's been fighting this since you've been a member of this forum and that's a long time to be so miserable.  

If that endo is so dead set against T3 medication and doesn't care for her patients any more than she apparently does, she doesn't deserve to have a license.  If I'm not mistaken doctors are under oath to do no harm and she certainly is not fulfilling that oath.

If I were your wife, I'd be on the phone interviewing doctors to find one who would treat me as a human being, not as a TSH number or a type of medication.  I know you've tried to keep the doctor within your health insurance/HMO, but they seem to be one of the problems and from what I'm seeing, you may not have a choice but to go outside to find a doctor who will help your wife get well.  As I said before, most insurance companies pay doctors outside the network, even though it's a reduced rate.

As you say - this nonsense has gone on too long.

[flyingfool]

The endo ceratinly had a problem with the low TSH for my wife.  And the endo was also clearly "anti-T3" for lack of a better description.

In the screening process my wife was asked a BUNCH of questions.  The computer which I assumed correlated the responses came to the conclusion that my wife was "hypo".

Yet the Endo did not believe this.  And the answer to a single question REALLY pushed her over the edge. And this question related to the quality of sleep for my wife. And my wife answered that she cannot remember the last time she had a good nights sleep. As in YEARS.  

The Endo grabbed onto this poor sleep answer as sure as hell proof positive that my wife was over medicated and would not let go of this mindset.  Even when I told the endo that the same sleep patterns of poor sleep was present when she was and remained Hypo and undermedicated. That the ONLY significant improvement in her symptoms resulted after she started taking T3 and this did NOT make her sleep pattern worse in any way and in fact she was FAR less fatigued etc.

The Endo was relentless and so was I.  the Endo stated that my wife was "mid range" or even high in the range for FT3.  But when I pulled out the excell spread sheet that indicated that that my wife was only 35% of the FT3 range and stated I don't understand how you can say that 1/3 of the range is mid or high?

Then the endo brought out the whole idea of FT3 test being variable and not reliable test.  Stating that the sample is so small and the units so small that the variation etc make the test unreliable etc.  etc.

To me it seemed clear that the endo was tiring of this know patient advocate (for my wife) challenging the trained MD and the end wanted nothing more to do with me and was "writing off" the whole test as being moot and you don't know more than I do....

My wife at the time when told to reduce her meds decided sacrafice and knowing that she would feel worse in order to clinically prove to the endo that she needed T3. But the initial cut back from 7.5 mcg T3 daily total down to 5.0 T3 was "reasonable" but my wife reported feeling worse. But the silly TSH was still supressed so the Endo demanded despite my wife's pleas that she was feeling worse aready and protested the complete removal of T3 altogther my wife said well I guess I still have to prove it to them and decided to suck it up and endure the pain that she knew would result.  

And this is where we are at. She now feels significantly worse, she has foot pain that the Dr's sent her to PT for which did absolutely NOTHING, she still is sleeping like crap, her periods are irregular etc she is fatigued etc I think has gained weight despite eating less and better diet and even diet meal replacements and salads etc etc.  And the joint and foot pain coincided EXACTLY with the elimination of the T3 and no known other injury or anything that would cause the foot pain (near heal).  My wife can barely walk first thing in the morning and limps now despite icing and PT excercises and other medications applied and recommended by PT theripist.

The PT theripist told her not to come back because clearly PT is not working and they can find nothing else wrong.

Again the foot/heal pain coincided within a VERy short time after the removal of the T3.  But she is told that "there is no way that can be thyroid related".

Yeah Right!

So we are on the last straw here and now.  My wife is at the point where she has enough evidence to "prove" that she needs the T3 so if the Endo doesn't agree then my wife may blow a gasket but for sure blow this endo off and find another Dr somewhere, somehow.  Because this nonsense has gone on too long!

[Barb135]

Our own body, naturally, does what's best for us, if we leave it alone and let it.  If T3 was so horrible for us, our body would not even make it!!  Again, when things are working like they're supposed to, T3 is the hormone that keeps us going.  It's only when things go haywire and we start producing too much T3 that we have trouble.  But even then, it's not the T3 causing the trouble; it's the increased metabolism.

I'm assuming they are cutting your wife's med because of low TSH?  Her FT3 has never been high enough to be a cause for concern.

My endo started getting concerned about my low TSH, at one point, and I pointed out that my FT3 was actually quite low in the range, so I couldn't possibly have too much in my system.  He finally conceded that taking T3 med causes low TSH.  In order for him to be willing to leave me on the T3 med, he does request that I have a bone density scan every 2 yrs, but it's possible that he may start requesting them more frequently, now.  I'm not sure what he will do, if/when my osteopenia progresses to osteoporosis, because, as you say, cutting back on my T3 med will be barbaric to say the least.

Of course, you have to do what's best for your own family, but, personally, I wouldn't hesitate to go out of network, before I'd let anyone send me back to hypo he!!.  

[flyingfool]

I agree with you about the state of the medical industry and the need to go outside the standard MD's and into the realm of 100% out of pocket Holistic medicine.  But I still want to try to seek out a Dr within the HMO system. Although we are QUICKLY getting to a point where we will have to go outside.

Then even going outside we still have to find a physician who will really know thyroid and treatment and not just guessing or trying to sell us a bunch of expensive supplements.

Also your theory as to the variability of T3 makes perfect sense to me. Variable for "normal" people due to on demand rise and fall, but with medication provided dosage, and no or little ability for the body to provide FT3 then the levels remain stable.

Bottom line is still that the Dr's should be solving the symptoms with medication, not trying to get a specific numbe per say.  And what is happening now with my wife borders on barbaric.  Continue to cut dosage even though my wife is telling them that she is feeling worse and worse.  

We will see how the next phone call or office vist goes and if they do not add back in the T3 we will be GONE! to find another Dr!!!!! This is the last chance for this Endo.

The endo was absolutely convinced that T3 was going to cause bone loss. So we may offer a "deal".  That is that my wife will get a baseline bone density test, and she will go back on T3.  And then retest the bone density test in a year or so and we will know if there is any bone loss. And if no bone loss then we know the truth!



We are still awaiting my wifes FT3 result from Mondays blood draw.  If not back in a week we will start making calls to find out what the deal is!

[Barb135]

I'm not sure what you refer to when you say "inaccurate"; that implies to me an analysis error or something.  No, I don't think FT3 is unreliable, but I do think it's variable, particularly in those "not" on thyroid med vs those on T3 med, which is why your wife's levels track pretty steadily.  

Here's my theory:  When you have someone who has a normally functioning thyroid, with normal conversion, etc, they basically, have hormones on demand i.e the thyroid is producing and the liver and other organs are converting all the time/whenever needed, so levels are up and down.  During times of stress, fear, illness, etc we need more than we do when things are humming along on an even keel.  If our body is functioning properly, it will produce them when we need them, but when we're on med, we have to keep levels high enough to cover those situations.  We're determining how much hormones our body gets and we give it the same amount of hormones every single day, so our levels are more likely to stay more constant.  If conversion is working properly, our FT3 could very likely vary more than we think it does, depending on our needs.  Lower stress could explain why some people can get by with lower levels than others.

In the case of the T3 med, we take it, our levels rise, peak and the majority of it leaves our body within a few hours.  We're, typically, testing in the early morning, prior to having taken our medication, so our results will be pretty level, as long as our dosage stays the same, each time we have blood work done, unless thyroid tissue destruction is going on big time. Those like me, whose thyroid is "dead" and levels don't fluctuate, have, in effect, learned how to play the system... we know when to get our labs, when to take our med, etc.

It does seem that there is a new graduating class of doctors who are willing to add FT4 to the TSH, but they still aren't willing to add the FT3.  They are fully aware that FT3 is the active hormone and that it must be converted from FT4, which is correct... where they make the mistake is that they assume the conversion process never breaks down.  That's why so many of us, like myself and your wife get left behind... because our conversion process DID break down and the doctors refuse to admit that possibility and since they don't want to test FT3 and don't understand how to interpret the results anyway, we're sunk, if we don't take things into our own hands.

My former pcp absolutely refused to run FT3 and he refused to refer me to an endo, so I was basically at a dead end, until I could find a different doctor (I didn't know gimel at that time... lol).  If not for being sent back to an ENT who had done some vocal cord surgeries on me, having him see the condition I was in and getting the chance to explain what was going on, I don't know what would have happened to me.  That ENT sent me for antibody tests (which my pcp had also refused to order), which came back elevated; sent me for an ultra sound, which my pcp had refused and which showed multiple nodules; he diagnosed me with Hashimoto's and referred me to my endo.  While waiting for my endo appointment, I went to an independent lab and got a Free T3, Free T4 and TSH, that I paid for, out of pocket,  to take with me to my first appointment, which saved weeks.  All anyone had to do was look at me to see that I was very sick.  My low FT3 and symptoms were enough to convince him to start me on cytomel that very day.  As long as I can keep my endo, I'll be okay.

What I see happening to a lot of us, is what we don't want to see, but aren't going to be able to avoid and that's going to the naturopaths, osteopathic doctors, etc, though my pcp is an osteopath, who is a firm believer in TSH and works aggressively to keep it "in range", so we do have be careful there, too.  The problem is that most of these doctors who think "outside the box" won't take insurance, HMO's etc, because insurance, including Medicare, doesn't pay enough for their time to do the complete work up, exam, etc. I think a lot of thyroid patients are either going to be paying out of pocket for adequate care or staying sick... that seems pretty bleak, doesn't it?  I sure hope I'm wrong, but if for some reason I lose my endo, that will be my path, because I don't see mainstream medicine and/or insurance companies changing much for the better any time soon when it comes to thyroid.

[ahmee]

I would be interested to know where they get their information from. You might as well ask them. You can also show them this study: http://www.ncbi.nlm.nih.gov/pubmed/12915350
which clearly states that FT3 and FT4 have superseded Total as the most precise measurements of thyroid hormones. For good measure, it also mentioned that TSH can be "diagnostically misleading"!