# My primary care doctor ordered a free T3 test for me and I'm scared



## birdbirdbird (Nov 26, 2014)

Because if this test doesn't show anything, I'm going to have an even harder time getting anyone to take me seriously. I 1000% believe I have a thyroid problem and have had one for many, many years. But what if this test comes back normal like my TSH and T4 tests always do? I have specifically asked for further thyroid testing, but this seems to be as far as my primary care doctor is willing to go. Under my insurance plan, I need her to refer me to an endocrinologist. I can't self refer or just show up at an endocrinologists' office.

I can go and do the free T3 test at any time but I'm scared it will show nothing.

Am I ridiculous?

It's just been SO LONG.


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## Octavia (Aug 1, 2011)

No, you're not being ridiculous at all. In your writing, I sense the desperation to feel better.

Refresh my memory... what about antibodies... have you had those tested?


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## birdbirdbird (Nov 26, 2014)

I don't think so? What is the antibody test called?


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## loveishere (Nov 29, 2014)

Sorry you're going through this. I know how frustrating it is. I've been dealing with trying to find relief and help for four years. I've had low labs and still they won't listen and the meds never made me feel better..well I dealt a tad bit better on natural thyroid but my Dr took me off and said it was too dangerous. The medical field is black and white and a lot of Drs think just because you look fine and your labs aren't that bad they'll dismiss you. Also, sometimes you have to find another Dr. And ask for the test you need because they won't test everything. All the best and great health.


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## Octavia (Aug 1, 2011)

birdbirdbird said:


> I don't think so? What is the antibody test called?


TPO, TSI... there are others.

I am not well-versed in thyroid antibodies because I never had to deal with them. Others here know all about them, though, and I'm sure they'll be along to answer.

If you have high antibodies, they can affect your other thyroid labs, so labs that look "good" really aren't good. Like I said...others here know a lot more than I do about antibodies.


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## birdbirdbird (Nov 26, 2014)

Okay, thanks. I have not had those tests.


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## Octavia (Aug 1, 2011)

Another random thought.... when you get your Free T3 test, is that the ONLY test that's been ordered for you? Generally, I get Free T3, Free T4, and TSH all done at the same time. They tell a more thorough story together than separately.


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## birdbirdbird (Nov 26, 2014)

Oh, those have all been ordered but the free T3 is the only one I've never had before. The TSH and T4 always come back normal.


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## ssMarilyn (Nov 15, 2013)

I finally got the FT3 test done, ON MY OWN.. and my number was at the bottom. Needs to be in the middle of lab ranges, so keep that in mind. Don't let any doctor see a low FT3 and say you're 'normal'.


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## birdbirdbird (Nov 26, 2014)

Thanks for the help.


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## Andros (Aug 26, 2009)

http://thyroidboards.com/forums/topic/11389-almost-all-the-symptoms-of-graveshyperthyroid-with-normal-tsh-t4-help/#entry94673

Post #5


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## birdbirdbird (Nov 26, 2014)

I haven't been able to convince my doctor to do the other tests you mentioned in that post, Andros. Today's tests were as far as I've ever gotten, and all of these except for the free T3 have been done before.


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## birdbirdbird (Nov 26, 2014)

I am still awaiting the new test results, but in the meantime, I have written a letter to my doctor in the event that she says I'm "normal." It basically says that I understand that the tests she has run have revealed "normal" results, but that I have talked to several thyroid patients, many of whom were not diagnosed until they were hospitalized or had the more specific testing I've requested. In the letter I ask for a referral to an endocrinologist, and then I have listed all of my thyroid symptoms, including their lengths and how severe each is. I feel like this is something that a reasonable person could not ignore. But I don't know very many reasonable people. Fingers crossed.


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## Andros (Aug 26, 2009)

Well; at least you are making headway. We all will be anxious to see the FREE T3 results and please get the range also as different labs use different ranges.

I don't blame you for being scared. Not at all!!

Sending hugs,


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## birdbirdbird (Nov 26, 2014)

Thank you. It's taking much longer than usual for me to get my results, which is adding to my impatience here. In the past, they've always come back within a few hours of the tests. It's been over 24 hours this time. I doubt that means anything, but I just want to see them.


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## KeepOnGoing (Jan 2, 2013)

It always seems to take a while to get FT3 results - over here in the UK I assumed they were trying to save money and so waited to see if you noticed it was missing!

Fingers crossed for you...

Z


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## birdbirdbird (Nov 26, 2014)

Hrm. No results today, I guess, since the clinic is probably closed now. I really thought I'd see something today and now I guess I will continue to drive myself nuts until I do. However, I have done a lot of research and reading about these issues during the past two days, so at least I'm more educated! :/


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## Octavia (Aug 1, 2011)

bird, if this test comes back normal, it may be time for you to "take matters into your own hands" and order your own labwork from one the online lab sites suggested in your other thread. Your additional labwork needs to include antibodies testing, for sure.

Keep us posted.


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## birdbirdbird (Nov 26, 2014)

Yes, I agree. I still haven't gotten the results and that is really unusual, considering that every other time bloodwork has been done by this clinic, I've gotten results within a few hours. It's been two full days now. As you can imagine, I am feeling terrible right now, symptom-wise. I don't know if it's the waiting or the stress or if I'm just getting sicker. This is all a huge bummer and I'm trying to do other things to distract myself, but that's not working out so well. But as soon as I get an answer, whether it's "normal" or abnormal, at least I am ready for what I need to do next.


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## joplin1975 (Jul 21, 2011)

I could be wrong, but I thought free t3 tests take a bit longer. Hence the additional expense. Hang in there -- it will come in eventually. Until then, there's no sense in borrowing trouble.


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## Octavia (Aug 1, 2011)

bird, I'm curious: since your doctor is doubtful that you have a thyroid disorder, what else has she done to rule out other possibilities? Any other testing at all? If I remember correctly, you've felt bad for a long time.


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## birdbirdbird (Nov 26, 2014)

Joplin, I have only been with this particular primary care doctor for just under a year because I switched jobs this time last year and had different health insurance, but she is not the first to ignore or fail to treat what's going on. In February of 2014, my TSH and T4 came back with normal results. My doctor then suspected Celiac even though the blood screen for that didn't indicate it and I told her I'd tested negative for that in the past. She sent me to a GI clinic. They tested me for whatever all they test for with a colonoscopy and endoscopy. They found nothing. They told me at that clinic that they believed I had an autoimmune condition, but it wasn't a GI disease. They did find later that I had small intestine bacterial overgrowth, for which I was treated with antibiotics for a while. Nothing changed, symptom-wise. I believe that it was around September that the GI clinic told me they couldn't find anything from a gastroenterology perspective and I was told to go back to my primary care doctor. I haven't even been able to get an appointment with her since then, and it took months to get her to order further thyroid testing. So I had the TSH, Free T4, and Free T3 done on Monday of this week, and those are the results I'm waiting for. I know other tests have been done but I don't think they're related, although I probably wouldn't know.


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## birdbirdbird (Nov 26, 2014)

Oh, sorry, that was Octavia who asked this question.


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## KeepOnGoing (Jan 2, 2013)

Could you ring up and ask when you are likely to get the results? This might at least give you a time frame, to save this endless waiting (I know how tiresome it is, I waited 5 weeks for a thyroglobulin result once!)


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## birdbirdbird (Nov 26, 2014)

Yes, I could do that. I just hate making phone calls, which is silly.


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## KeepOnGoing (Jan 2, 2013)

No, I know exactly what you mean. I tend to prepare a script in my head before I make phone calls like that - and try it out loud on the cat to check that I don't sound completely batty, before I dial the number. (Re-reading that, I think I've just confirmed that I AM completely batty, but never mind!)

Which is worse - the eternal waiting or a quick phone call?


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## birdbirdbird (Nov 26, 2014)

I did call just now, but they couldn't tell me so I'm waiting for someone to call back.


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## joplin1975 (Jul 21, 2011)

KeepOnGoing said:


> No, I know exactly what you mean. I tend to prepare a script in my head before I make phone calls like that - and try it out loud on the cat to check that I don't sound completely batty, before I dial the number. (Re-reading that, I think I've just confirmed that I AM completely batty, but never mind!)
> 
> Which is worse - the eternal waiting or a quick phone call?


 :tongue0013: This just made me laugh!!!


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## birdbirdbird (Nov 26, 2014)

They just called me. I don't have all the numbers yet, but the nurse I spoke to said that everything was normal and that I'm "all good."

No, actually. I am the opposite of that. I'll post numbers when I have them.


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## birdbirdbird (Nov 26, 2014)

I'm more upset by this than I expected to be.


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## Octavia (Aug 1, 2011)

birdbirdbird said:


> No, actually. I am the opposite of that.


Okay...how clear have you made this to the nurse and doctor? Regardless of whether it is or is not your thyroid, something is making you feel horrible, and has been for a long time. I would push quickly and firmly to find out what your next steps are.


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## birdbirdbird (Nov 26, 2014)

I feel like I've made it explicitly clear on many occasions, and some of those are in writing. But I have a plan for what to do now and I'm going to move forward. I was just really hoping that maybe I'd get an answer today and not knowing anything - still - is what's got me upset. I'll get over that. I've been getting over it forever. I probably just need a little time to mourn.


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## KeepOnGoing (Jan 2, 2013)

Never accept "It's all fine!"

There's fine, and fine for you. I kept being told my FT3 was fine at 3.8 (range 3.6 - 6.8). It might just have sneaked over the bottom of the range, but it definitely wasn't fine for me. Eventually, it dipped to 3.6. Amazing! Suddenly it was too low and they were willing to do something about it. Then I started to feel better.

I ALWAYS get the numbers - and ranges - every time...


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## birdbirdbird (Nov 26, 2014)

I will get the numbers when they post them online. I really didn't want to talk to her anymore when she said I'm "all good." I was so insulted by that, I basically hung up on her.


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## Octavia (Aug 1, 2011)

I feel like most of us have been where you are now. It's a mixture of sadness, anger, and immense frustration. All you want is news...even if it's bad...because it's something.

This might be a longshot, but most (may all) insurance companies have Case Managers. In a nutshell, they help sick people navigate the healthcare system to get what they need in the most efficient (read: cost effective) way. I wonder if, even though you don't have a diagnosis, you could get in touch with your insurance company's case management department and get some help getting to the bottom of whatever is going on with you. Might be worth a try.


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## birdbirdbird (Nov 26, 2014)

They might have something like that. I will call them and ask. Thanks for the idea.

I am definitely sad and angry and frustrated. I keep wondering how doctors can really let anyone live like this. I don't know if they don't believe me, or what, but I have symptoms that they could actually observe with their own eyes. I'm not making this up.


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## voto23 (Jul 23, 2012)

birdbirdbird, I have been in your shoes more times than I care to remember. Sadly, most of us on this forum have. I feel for you, I truly do.  Tonight might seem like a defeat but it's all pieces of the puzzle. Just keep taking any new info (these test results) and move forward with it.

Thinking of you.


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## birdbirdbird (Nov 26, 2014)

Thanks, all. Okay, here are my numbers, which I don't think are even remotely showing hyperthyroidism, considering what I've learned from you all and from my own reading. The first column is the name of the test, the second is the normal range, and the third is my own result. This is the highest my TSH has ever been, that I know of. I really don't understand. Is there something that mimics Graves but isn't Graves? I feel so lost.

Microsomal Ab

0 - 34 IU/mL

<10

T3, Free

2.2 - 4.0 pg/mL

2.1

T4, Free

0.70 - 1.45 ng/dL

0.78

TSH

0.36 - 4.20 uIU/mL

1.52


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## birdbirdbird (Nov 26, 2014)

Sorry, that didn't come out like I thought it would, but the last number you see for each thing is my value.


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## joplin1975 (Jul 21, 2011)

Your free indicate you are way hypo. I'm not sure why your TSH remains so low with those numbers, but I'm guess someone will be around soon with a good theory. I'm guessing you've got anitbodies galore.


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## birdbirdbird (Nov 26, 2014)

Hypo? Wow, I don't understand this.


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## joplin1975 (Jul 21, 2011)

Both frees are at the bottom of the range, indicating that there is barely any hormones floating around in your system.

My free numbers looked similar when my TSH was 121.


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## jenny v (May 6, 2012)

Yeah, I'm not sure how that nurse could say you're all fine when your Free T3 has dropped below the range. I think your next step should be antibody testing--with your low frees and low TSH, I would bet that's what is skewing the numbers.

And just to help:

Low Frees = Hypo

High Frees = Hyper


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## birdbirdbird (Nov 26, 2014)

The reason I don't understand is that my symptoms are those of hyperthyroid, and not hypo at all. I never sleep, I've lost tons of weight, I am hot and sweaty all the time, my hands shake, etc.


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## birdbirdbird (Nov 26, 2014)

Isn't the first test an antibody test though? It says Microsomal (TPO) Ab on the chart. That is one I didn't know she ordered.


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## birdbirdbird (Nov 26, 2014)

I feel like I'm literally going crazy.


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## joplin1975 (Jul 21, 2011)

There are a fat ton of antibodies which can be tested. TPO is just one of them. In you case, I'd be really interested in TSI.


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## birdbirdbird (Nov 26, 2014)

Okay. I'm editing the letter I had already prepared for my doctor when she came back with this "you're normal" crap to include some of these things and I'm asking for an immediate referral to an endocrinologist, but is there any other kind of specialist I should be requesting?


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## birdbirdbird (Nov 26, 2014)

Hey, guys I finally got my referral!


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## joplin1975 (Jul 21, 2011)

Yeah!


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## birdbirdbird (Nov 26, 2014)

It only took 20 years!


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## voto23 (Jul 23, 2012)

Yay!! Keep pushing forward!!


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## Octavia (Aug 1, 2011)

Good for you, birdbirdbird!!!


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## birdbirdbird (Nov 26, 2014)

I think I might kill my mother. Not really, but she is a burden. At any rate, she JUST NOW told me that she is on meds for hypothyroid and has been for a long time. If I had known this a long time ago, it probably would have helped me to get to a specialist. SHE NEVER TOLD ME GAHHHHHH :sick0012:


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## birdbirdbird (Nov 26, 2014)

A friend of mine emailed my numbers and symptoms to her mom, who's a doctor. She suspects Addison's. I started to suspect that last week, but didn't want to believe it because I thought maybe I was just trying to have what President Kennedy had. I'm an unrepentant fan of the Kennedys.

However, now I have at least some confirmation of that. So it looks like I'm on the right track, but wow, what a bumpy ride.


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## MJRusso (May 25, 2012)

At some point you might want to consider having an ultrasound or x-ray done if your blood work isn't revealing any problems.

I was in a similar situation where I had symptoms suggesting a problem with the thyroid, so my Dr. ordered blood work to be done along with an ultrasound to be performed on my neck. My blood work came back showing all of my thyroid levels were within the "perfectly normal" range. Ultimately, it wasn't the blood work but the ultrasound that revealed the underlying issue: a tumor, which was eventually diagnosed and later confirmed by pathology to be an aggressive, stage IV case of thyroid cancer.

Of course, your situation is likely to be something completely different from mine. I just thank God my Dr. didn't base all decisions strictly on blood tests...


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## birdbirdbird (Nov 26, 2014)

THE ENDOCRINOLOGIST DENIED MY REFERRAL and they won't see me???? WHAT THE HELL???


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## Octavia (Aug 1, 2011)

Is there another one in the area you can try?


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## birdbirdbird (Nov 26, 2014)

Not unless I go out of pocket, which I can't afford. The folks who declined my referral are the only ones in my plan in town. I've been so depressed since this happened that I can barely move.


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## KeepOnGoing (Jan 2, 2013)

It's me again - with my usual suggestion!

Can you ring them and ask why they have refused it? I don't understand your systems in the US, so it might be that I've got the wrong end of the stick completely, but perhaps they've overlooked something (or your doctor's referral was less than .... sympathetic, shall we say?)

Worth a go?


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## birdbirdbird (Nov 26, 2014)

The message I received says "your thyroid function is normal so we don't think we can help you." I do suspect my primary of being "less than sympathetic" in the referral.


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