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Princesca 07-26-2012 06:44 AM

Puzzled by my thyroid results...
Edit: I realize my post is long, so here's the raw data. TSH <.03, FT3 4.3, FT4 .96, Uptake 31.3%, diagnosed PCOS and nodular goiter, no perceptible thyroid symptoms. Results of scan this afternoon. Thoughts?


Hi everyone - this is my first post, so please bear with me!

I am hoping someone can assist in helping me understand some thyroid results that don't make a whole lot of sense to me.

I have had the WORST allergy season ever this year, because of the fact that we did not have a winter, and we have had next to no rain. Usually, I am able to function with an occasional dose of Claritin, but this year I actually needed prescription Flonase. Anyway, to cut to the chase, I went to my GP for allergy help, and he ended up feeling my thyroid and asked if I had ever been diagnosed with something called multinodular goiter. He ordered a TSH test, which came back <.03 and referred me to an endo. All other test results were normal - BP 124/74, 67 resting heart rate, blood sugar 80, cholesterol normal.

Anyway, so I went to the endo. TSH levels came back in the same range. Free T3 was 4.3, free T4 was .96. Went for a radiation uptake and scan - I don't know the scan results yet, but my uptake was 31.3%. From what I have read, my Free T3/T4 are within the margin of error for normal, and my uptake is borderline, higher than the max but lower than the diagnosis for hyperthyroid. My thyroid ultrasound, done in the endo's office, did confirm the presence of nodules.

I don't think I have any symptoms of hyperthyroid. I don't have insomnia, I certainly can't lose weight without trying (I have been overweight my whole life), I don't have anxiety (well, wait, I'm a working woman in her 30s in a recession - okay, yeah, I have anxiety but I'm pretty sure it's situational). If anything I feel hypo... I can't lose weight for anything, I can pretty much nap at any given time of day. But even then, I don't feel abnormally so... if I'm tired, it's because I go to bed at 11 and get up at 5:45.

I have a meeting with my endo this afternoon, and would like to have some idea of what I'm dealing with so I can come prepared with questions. From what I've read, it seems to me that I should have the antibody tests run? Does anyone else have any insight or advice?

Thanks so much for your help. I have researched this like crazy, but I can't seem to come to any strong picture of what these results might mean. Because my test results seem so borderline, and I have no symptoms and am in good health otherwise except for my weight, I am very hesitant to engage in any strong course of therapy. Could 'wait and monitor' be a viable option?

Also, I'm not sure if it matters, but I have also been diagnosed with PCOS - though aside from weight and not getting my period, I don't have any symptoms of that, either. (ie no apparent blood sugar issues, etc)

sammy64 07-26-2012 09:39 AM

Re: Puzzled by my schizo thyroid results...

Sorry for the reason you're here but, glad you found us.

It's possible that one of your nodules is throwing off thyroid hormone and that's why your FreeT3 level is elevated and your TSH is resultingly below-range.

Please know that lab results can only be properly interpreted within the context of the reference ranges a particular lab uses. Different labs use different ranges so, it's impossible to evaluate your results without knowing the ranges.

As you noticed, I recently helped someone else with similar labs as yours. If your ranges are similar to her lab ranges, my advice to you is the same as it was to her.

Full antibody testing is most appropriate. Here are the tests you'll need:

TPOab (thyroid peroxidase antibody)
TGab (thyroglobulin antibody)
TSI (thyroid stimulating immunoglobulin)

Please make a note of everything the endo tells you and share it here. Endos are often the worst with properly diagnosing/treating thyroid disease.

And, please, do not agree to any type of permanent treatment. I'm already unhappy to hear that you've been exposed to unnecessary radiation with the uptake scan.

The scan was never able to provide conclusive information and, once antibody testing became available, the results of those tests along with a thyroid ultrasound provide much more accurate information.

sammy64 07-26-2012 09:45 AM

Re: Puzzled by my schizo thyroid results...
Me again

I suspect that the range for your FreeT4 result is similar to the most common range .8 - 1.8.

Reason I say this, you are reporting hypo symptoms and a level as low as yours wouldn't work for anyone.

If the range for your FreeT3 is the most common 2.0-4.4 (or very similar), your result was slightly over-range.....this could be what caused your TSH to be so low. It's also antibodies have affected your TSH level (that's what keeps my TSH level low).

No matter what, since you are not reporting hyper symptoms, you do not need anti-thyroid drugs but, instead, some thyroid hormone replacement (Synthroid/levothyroxine is the most common) to bring that FreeT4 level up to one similar to a healthy person's level.

Once an inadequate FreeT4 level is corrected, it's common for the FreeT3 level to auto-correct.

I'll explain more later after you meet with the endo...and I have a little more time.

Princesca 07-26-2012 10:04 AM

Re: Puzzled by my schizo thyroid results...
Sammy - thank you sooo much for helping me make sense of this. I will ask for a copy of my file and test results from the endo before I leave, and will also take the best notes I can. I am somewhat concerned because, while my endo seems at least clued in to needing the F3/F4, she and her medical assistant keep throwing around the word hyperthyroid like it was just a done deal. I'm curious what she'll say today, and I'm curious what the scan will show in terms of hot/cold nodules.

I had already decided that if she recommended any permanent treatment I would get a second opinion. I do not like the idea of living without my thyroid.

It sounds like the main thing I need to keep in mind at this point is that I should avoid any pharma treatment that affects both my T3 and T4... that it's most likely that adjusting one could correct the other. Thanks for that, because I had been thinking that anti-thyroid meds were going to be the answer for me, based on what I had been reading online.

I'll let you know... thank you again!

Missy1227 07-26-2012 12:03 PM

Re: Puzzled by my schizo thyroid results...
I'm in a similar situation as you. When I first found out I had thyroid issues my TSH was very low FT4 low low end of normal and FT3 was above normal range. My antibodies were >1000. The doctor put me on Anti thyroid meds and my FT4 is even lower and my TSH and FT3 are higher. I'm learning so much on here with most all of my help coming from Sammy64. It helps me know what questions I need to ask. There is so much to all this Thyroid that it stresses me out :( I have a message into my doctor about what Sammy64 suggested, to do block replace therapy. I've had a ultrasound and a repeat one in about a month. I know I have a 1cm nodule that will be biopsied eventually from my understanding. I'm confused that Sammy doesn't like that you have had the uptake scan done. I thought it showed the doctors exactly what was going on with the thyroid.

It's nice not feeling so alone. My family has thyroid issues but I'm one of the first to have a goiter :( so it's all new and no one else around me can relate. They also have traditional Hypo results and Synthroid is all they have ever needed. Hopefully I'll get there one day.

sammy64 07-26-2012 12:14 PM

Re: Puzzled by my schizo thyroid results...
Unfortunately, we are limited to what we can post in the open forum. Otherwise, I'd share some information about the RAI scan and why it's outdated.

Yes, it used to be the only test to guesstimate what was happening with the thyroid.

But, now with ultrasounds and comprehensive thyroid testing (FreeT4, FreeT3 and antibody testing), there's no need for a guesstimate-type test when definitive testing is available.

In the 5+ years I've been participating on multiple thyroid forums, we've come to the conclusion that the doctors ordering RAI scans are often the same doctors pushing RAI ablation of the thyroid.

The scan gives the nuclear medicine peep a vague idea of how much radioactive iodine they would need if the patient opted for RAI ablation.

Since the RAI scan is inexact, I do not like the fact that people are exposed to unnecessary radiation.

Mismanagement of thyroid disease is rampant as evidenced by how busy this forum and other thyroid forums are. I have yet to see another health issue get as much attention on forums as thyroid issues get.

That says a lot.

An educated thyroid patient is the healthiest one.

I was forced to educate myself because I suffered under the care of 4 clueless doctors. I'm trying to help prevent others suffer the same fate.

Princesca 07-26-2012 12:55 PM

Re: Puzzled by my schizo thyroid results...
Okay, here we go... I'm not going to say what my thoughts are, because I'm curious if you guys have the same reactions. Just going to post the data and the treatment recommendation.

TSH <.01 (.34-4.82)
FT4 .96 (.56-1.61)
FT3 4.3 (2.3-4.2)

I asked about the antibody tests and she had not run them. She agreed to run one of the three (TPO?), but would not run the other two as the results would not change her diagnosis.

Here are my scan/uptake results:

24 hour uptake is 31.3% normal 10-30%. Thyroid appears enlarged overall measuring up to about 7cm on right and 7.4 on left. No discrete hyper or hypo is seen in the right lobe. Lower two-thirds of the left lobe has a contour suggesting generalized enlargement and it appears to have relatively more intense tracer activity than the remainder of the thyroid, suggesting relatively large hot nodule in this location. Relatively diminished tracer accum in the upper pole of the left lobe may be an artifact. The possibility of cold nodule in this location is not excluded, and correlation with the ultrasound is recommended. (She said that based on the ultrasound she believed it was cold.) Further noted: Above the relatively large hot nodule or multiple small nodules, there is an area of relative photopenia. The possibility of a cold nodule at this location cannot be excluded. Correlation with the patient's ultrasound is recommended. If there is a nodule at the locaiton of photopenia in the upper pole, a fine-needle aspiration biopsy would be recommended.

Here is her treatment suggestion: Immediately start taking 5mg of methimazole leading up to complete removal of the thyroid due to the possibility of cancer.

I asked about a biopsy and she said there would be no point.


sammy64 07-26-2012 03:22 PM

Re: Puzzled by my schizo thyroid results...
Sorry to hear of yet another clueless doctor.

Dare I ask what her reasoning was for wanting you to take methimazole? You haven't reported any hyper symptoms.

Now that you've provided your lab ranges, you can see that your FreeT4 range is a little different than the most common range. Still, your level is below mid-range and no one feels good with a level like that - it is surely hypo.

Now, your FreeT3 level is ever-so-slightly above-range and some people would have hyper symptoms with a level like that. I think this level is the only thing keeping you from feeling that too-low FreeT4 level.

In fact, when the body senses a too-low supply of T4 storage hormone (measured by the FreeT4 level), it will sometimes "overconvert" whatever T4 it has into T3, the active hormone (measured by the FreeT3 level). This could be what's going on with you.

I really think you should see an ENT to get a proper evaluation of the scan and the ultrasound. The fact that you have multiple nodules makes it more likely that you're not dealing with thyroid cancer.

I also think that you should continue to have your thyroid function monitored and, if you develop symptoms, let those labs guide treatment.

What were you thinking? ;)

Princesca 07-26-2012 03:37 PM

Re: Puzzled by my schizo thyroid results...
>Dare I ask what her reasoning was for wanting you to take methimazole? You haven't reported any hyper symptoms.

Well... my blood pressure today was 135/94. Yes, that's higher than I like, but just two weeks ago, at my GP, it was 124/74. And it's no wonder my blood pressure was high... all this stuff is driving me bonkers! My resting heart rate is in the high 60s, low 70s.

I was thinking that I couldn't believe, with my borderline lab results and my lack of symptoms and my overall fairly good health that she would suggest major surgery for total removal of my thyroid without even having a biopsy! I even asked her if taking an anti-thyroid medication would cause my T4 readings to crash, and she assured me that it wouldn't. She seemed most concerned with my TSH, and I have read enough to know that that is the least of my worries, or should be, at this point.

She gladly made me a copy of my paperwork, but when I asked her to tell me what the ultrasound results meant, because I couldn't read her handwriting, she replied, "It's just medical jargon, it won't mean anything to you." :rolleyes:

So... I'm thinking I should not fill this prescription, I should get a second opinion, and see an ENT (is that ear, nose, throat?)... can they help with thyroid? I mean, I know it's IN your throat, but...

I feel really almost abused by this doctor. She totally disregarded my concerns, and she seemed unwilling to think about any option other than full out removal. From what I have read, MANY people have nodules on their thyroid. The mere presence of nodules and a bad TSH reading should not, in my opinion, lead to surgery. I'm just flabbergasted.

sammy64 07-26-2012 04:18 PM

Re: Puzzled by my schizo thyroid results...
Trust your gut on this one (and sorry you had to deal with a doctor like this).

If it's of any comfort to you, my first 2 endos pushed RAI ablation of my thyroid and the third pushed surgery - all during my very first appointment. None of them knew how to medicate properly.

Yes, an ENT is an ear, nose and throat specialist. My thyroid doctor has had me consult an ENT about the various nodules I've developed since dealing with thyroid disease. The ENT did the FNA of a 1cm nodule and sent it out for biopsy. He was my main contact in regards to the physical condition of my thyroid.

Believe it or not, some forum members actually have their ENT's caring for their thyroid function and found that the ENT was much more thyroid-savvy than the endos they had seen.

I'd say start with the ENT for an evaluation of the physical state of your thyroid - maybe he/she can refer you to a doctor who could monitor your levels more appropriately.

If you'd like some ideas on how to find a thyroid-savvy doctor, just let me know and I'll share. :wave:

Princesca 07-26-2012 04:45 PM

Re: Puzzled by my schizo thyroid results...
I would LOVE some advice finding good doctors to help me deal with this. I am trying not to panic over the cancer possibility, because I know it's statistically very unlikely, but you know... you hear the C word and you tend to panic. So I'm trying to take a step back, and be calm, and not just rush into a decision this important because I'm afraid.

Thanks again for all your help... again, would definitely love any advice you have to give on finding someone who's willing to treat me as a whole person, and not just my TSH test results.

sammy64 07-26-2012 04:54 PM

Re: Puzzled by my schizo thyroid results...
I think the ENT will be your best bet re proper evaluation of the physical condition of your thyroid.

These are the suggestions I have to offer re finding a thyroid-savvy doctor:

1. networking
2. check the Top Thyroid Doctors site for a listing in your area
3. ask local pharmacists (not the counter help) for names of doctors that prescribe either Armour or Cytomel. Doctors that Rx either of these tend to be more thyroid-savvy
4. contact the Broda Barnes Foundation and pay ~$18 to get an information packet that includes a list of doctors in your state who follow Dr. Barnes' ideology (Dr. Barnes was the author of "Hypothyroidism - An Unsuspected Illness" and was lightyears ahead of his time)
5. find a doctor that prescribes bioidentical hormones either by checking websites or contacting compounding pharmacies (they are likely to have names of doctors that prescribe Armour which usually means they're more thyroid-savvy)

Best of luck to you moving forward!

Please keep in touch with us - it's obvious we care :)

Princesca 07-26-2012 05:17 PM

Re: Puzzled by my schizo thyroid results...
Thank you, I will! I checked the top thyroid doctors site, and the one that looked most promising to me in my city, when I went to his website, it seems like he does do natural hormone replacement, but he seems to specialize in things like Botox and some other mind-body treatments that have me feeling a little skeptical, like foot ionization... I'll keep looking. :)

sammy64 07-26-2012 05:34 PM

Re: Puzzled by my thyroid results...
A few months ago, I started maintaining a folder of thyroid-savvy doctors that were recommended on thyroid forums. Of course, I can't attest to any of them.

If you're interested, here are the only two from KY that I have:

Lena Edwards, MD in Lexington
Midway Center for Integrative Medicine (in Midway :)

Armour used to have a physician locator service on their website - I've been kicking myself for not making a record of all the listings before Armour discontinued the service.

Even though I'm thrilled with my doctor, I always like to have a backup plan :)

Princesca 07-26-2012 07:35 PM

Re: Puzzled by my thyroid results...
Sammy, thanks so much for the ENT and networking ideas!

I posted on ******** about my experience at the endo, and everyone agreed that it was time for a second opinion, including my cousin who works as a hospital lab tech and has thyroid problems herself. She actually suggested that I report my endo to the head of her practice and to my insurance company, for being unwilling to do relatively inexpensive labwork to gather more data, and instead skipping right to a costly procedure. But I think I'll let sleeping dogs lie on that one, at least until I have a treatment plan for myself. Oddly, my endo from today is actually recommended on the thyroid doctor website. Eesh.

One of my friends had thyroid cancer, and ended up having to have her whole thyroid removed, but she said her ENT talked with her about a partial removal and other options. (And in her case, cancer was confirmed - it isn't, in mine.)

So anyway... this guy works out of University of KY hospital, and he actually has an email address, which is unheard of in my experience. I emailed him to set up a second opinion consult, and he emailed me back within the hour asking when would be good for me to come in. I almost died of shock. I asked him about how to get him my records, and he said, "I am one of those e-physicians, always connected! Regarding medical records, we can request everything once you sign a release form, from clinic notes, labs etc..There's no hurry. Check your calendar and let me know what works best for you."

I think I might cry happy tears. He said there's no hurry! As opposed to my endo who was pretty much ready to schedule the surgery today! I feel a little more vindicated in taking a step back and considering other options, now.

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