Wonder what course of action I should take about thyroid issues...

[Xena060870]

Wonder if you can all help me interpret my labs and ultrasound.  I am a 45 yr old female with a history of postpartum thyroiditis after each child (4 times); and approximately 3 episodes of post viral thyroiditis (after having a major viral illness such as influenza, I experience all of the signs and symptoms that I had with the thyroiditis.  About a month ago I received my required flu shot at work, and about a week and a half after, I developed a severe viral illness.  My symptoms were fever, weakness, swollen glands, severe joint and muscle pain and stomach pain.  This lasted about four days.  Three days after that I woke up with horrible thyroid-area neck pain, ear pain, eye pain (pain when moving my eye), palpitations (heart rate of 120s), shaking, anxiety, diarrhea, sweating, shaking, all consistent with the feelings that my thyroid was going crazy.  My thyroid looked enlarged and felt enlarged.  I went to my doctor who thought I had thyroiditis, sent me for labs, and put me on a beta blocker.  I came here because I am pretty much tired of this happening.  I get scared every time I get sick that this will happen to me again.  I am much more concerned about developing Grave’s disease because both of my grandmothers had it (paternal and maternal), my father died at 32 from a heart attack and looking back now, he had exophthalmos, (I question whether or not he had Graves); my brother has exophthalmos and also had a heart attack at 42 with a quadruple bypass.  I have had thyroid antibodies at low levels for years…. But my labs have always been normal.  I have had elevated Reverse T3, but my doctors always said that doesn’t mean anything.  I posted my newest lab results and my thyroid ultrasound.  I almost feel as though after I get sick, one of my nodules gets hot and starts secreting thyroid hormone, thus the extreme feeling of hyperthyroidism.  I have been to a myriad of doctors, some of the best endocrinologists in some of the best hospitals – only to be told that my TSH was normal, and that I should probably take some Xanax or an SSRI.  
One good thing that came about from my most recent experience, was that I changed my whole educational endeavor.  I was working on my doctorate degree in Nursing (I have been a nurse for 20 years) and in the middle of my coursework, I decided to obtain my Nurse Practitioner certificate and focus on endocrine disorders instead.  I have been reading thyroid message boards for years, and see the trouble that people have with getting diagnosed and treated appropriately.  
I have posted my last thyroid ultrasound (last year) and my labs from last week.  Any input from the pros here would be appreciated.
US Thyroid and or Parathyroid 1/16/14
HISTORY: Thyroid nodules
FINDINGS: Right Lobe measures 49x12x20 mm and is globally homogenous in echotexture.
Nodule 1: is located lower portion and is a cyst with small echogenic component.  This nodule measures 7x5x4 mm.  Color image vascularity is unremarkable.  There are no suspicious calcifications associated with this nodule.
Nodule 2: is located lower portion and is solid and hypoechoic.  This nodule measures 3x2x2 mm.  Color image vascularity is unremarkable.  There are no suspicious calcifications associated with this nodule.  
Cyst in upper portion measures 6x3x4 mm.
Left Lobe measures 52x14x17 mm and is globally homogenous in echotexture.
Multiple colloid cysts are noted.  The largest cyst in the midportion measures 4x2x3 mm.  
Isthmus measures 3.5 mm.  There are no discrete isthmus nodules.  There are no abnormal lymph nodes seen.  
Conclusion: subcentimeter thyroid nodules and cysts are noted as described.  DXP: Multinodular goiter.
Lab Results
TSH:  0.81 Range: 0.27 to 4.20
Free Thyroxine:  1.45 Range 0.93 to 1.70
Free T3: 2.9 Range 2.0 to 4.4
Antithyroid Peroxidase Antibody:  4 Range 0 to 19
TSI: 102 Range < or + 122%

[Barb135]

I find it hard to believe that a good endo will go only by an ultrasound, as well, so keep looking - I'm not sure you want that one either, but you have to start somewhere - send a copy of your ultrasound report and make sure you include a copy of your labs, with all the antibody results as well.  Just because she only "asked" for the ultrasound report doesn't mean she won't "look" at the other stuff.  

You have nodules and even though they may not require anything specific at this time, they do require future surveillance.  That, along with your low Free T3 just might catch her attention, if she "really" thinks outside the box...

In the meantime, keep looking and it might be worthwhile to ask your doctor to start checking other things, as well as thyroid... For instance, have you had recent cholesterol levels tested?  What about blood sugar levels?  Is there a possibility you might have insulin resistance that could be contributing to your weight and other issues?  

There's also a condition called metabolic syndrome, that's a combination of conditions that you might look into... I have it and I think it's more prevalent than we realize.  It's a combination of 3 of 5 conditions, including high blood sugar, high cholesterol, high triglycerides, high blood pressure, obesity (large waist measurement - more than 40 in males and more than 35 in females).  Do some research and check out the symptoms...

[Xena060870]

thanks so much.  I will see what this new endo says and go from there.  At a minimum I get the repeat ultrasounds every six months : )
Ill keep everybody posted ..

[Xena060870]

I got my labs back and am at a loss:

TSI:    101           <119%
TRab:  <.90         <=1.75 IU/L
Antithyroglobulin antibody     17    <50 IU/mL

I feel like I am back at the beginning... without any answers.   Well at least I know I don't have hashimotos.

Thank you all for great advice and information.... I am very appreciative.  : )

[Xena060870]

My doctor admittedly says he doesn't know much about the thyroid antibodies.  I guess they just figured they would repeat all of them.  My coworker referred me to an endo after this most recent episode that prompted my initial post.... she said this endo "thinks outside the box".  When I called for an appointment, the secretary said she does not see you without having a copy of your ultrasound.  After she reviews your ultrasound, she will determine if you can be a patient in her practice.  Needless to say, I didn't pursue an appointment... because she would look at my nodules and say they weren't big enough for her to do anything about them.  (another one bites the dust);  
It amazes me that a physician can be the "head of endocrinology" in a large teaching institution, and still only go by the TSH.  Gotta love the medical community.

[Barb135]

We've seen many patients going to doctors in some of the most famous hospitals/medical centers in the country and they remain ill, because their doctors are no better than those doctors the rest of us can find in Main Street America... TSH is what they are all taught in medical school and until that is changed, nothing will change...

I'm still unsure why they're repeating the TSI, though I'm glad you're getting the TgAb... perhaps something definitive will come from these tests.

[Xena060870]

Finally had the new labs done... just waiting for my results.  Over the past two weeks.... I have been experiencing the worst eye pain - moving my eyes hurts terribly and they are a bit swollen on the top and bottom (not bulging though) - thank god.  I also have stabbing pains in the thyroid and I am not sleeping well.  Otherwise... I don't feel anxious.  
I feel like I need a good endocrinologist.  Pretty pathethic that I work in a major medical center.... and the physicians only rely on TSH.  

[Barb135]

They could be calling it "Antithyroglobulin Antibodies" (as goolarra noted) or  "Thyroid Antithyroglobulin Antibodies" or "Thyroglobulin Autoantibodies", but anyone who knows anything at all about antibody tests would know what the  Thyroglobulin Antibody (TgAb) test is, without having to look up a variety of names.

Why are they ordering TSI or TBII?  Those are both for diagnosis of Graves Disease and you've already had the TSI test... TBII is hardly ever done.

[Xena060870]

Finally picked up the right slips.  He is repeating TSI, and doing TGAB, TRAB.  I hope this is correct.

[Xena060870]

My doctors get confused with the thyroid antibodies, I swear there seem to be so many of them.  

Well anyway... I just looked at the slip and they ordered TSI (Thyroid stimulating immunoglobulin), TSH (regular thyroid stimulating hormone) and TBII (TSH receptor antibody) - that was it.  

I don't see TRAB or TGAB.  Do you know what they are actually called so I can ask them for the slips and get all of these labs done at one time.  Sorry for the inconvenience..... but I know its sometimes painful to get labs done, then realize you are missing a pertinent one that could help with a diagnosis.  Thanks - : )

[goolarra]

I have to wonder if they aren't calling it something else.  It's sometimes called anti-thyroglobulin antibodies, which seems a minor change but would put it in a very different place alphabetically.  I agree that the hospital has to do it.  

[Barb135]

If you have the antibodies, they will show up whether you are symptomatic or not, since one can have Hashimoto's for years without know it... once you have an autoimmune disease you have it for life.  

It would seem that someone within the hospital, at which you work, may have given you erroneous information... TgAb is a very common antibody test and I can't imagine any health system worth anything not doing that test.

[Xena060870]

Yes, my doctor gave me the lab slips to get the test at LabCorp.  
The hospital I work at doesn't perform the second antibody test... They only do the TPO-ab and TSI.  I wonder if I need to wait until I am symptomatic again to get them tested, or if the antibodies will still show up if I am not feeling hyper.  

What baffles me, is that I am talking about a huge health system in Philadelphia that does not run this test.  How many people have not been diagnosed appropriately because they do not do this test?! (just thinking out loud);

I appreciate all of your valuable feedback : )
thanks again

[Barb135]

I don't believe they are referring to symptoms being clinically indicated... it's the characteristics of the nodules: "none meeting ultrasound criteria for tissue sampling"...

Without both antibody tests, you can't possibly get a correct diagnosis... did your doctor give you the lab order to get that done?

[Xena060870]

Here is the most recent ultrasound from this week.

INDICATION: 45 year old female with history of thyroid nodules.
TECHNIQUE: Ultrasound examination of the thyroid was obtained.
COMPARISON: None.
FINDINGS: The right lobe measures 5.2 x 1.4 x 1.9 cm and is heterogeneous in echotexture and normal in vascularity. [] The left lobe measures 5.5 x 1.2 x 1.6 cm and is heterogeneous in echotexture and normal in vascularity. [] The isthmus measures 3 mm in diameter.
There are scattered, subcentimeter bilateral thyroid nodules with reference nodules as follows:

RIGHT LOBE:
R1: A 0.4 x 0.4 x 0.4 cm lower pole hypoechoic nodule with a punctate posterior calcification and demonstrable vascularity

R2: A 0.3 x 0.3 x 0.2 cm medial, lower pole nodule with demonstrable vascularity

LEFT LOBE:
L1: A 0.5 x 0.2 x 0.4 cm anterior midpole nodule with an echogenic focus suggestive of a colloid cyst

L2: A 0.3 x 0.3 x 0.2 cm hypoechoic midpole nodule.
There are bilateral, cervical lymph nodes that do not meet size or morphologic criteria with a reference 1.9 x 0.4 x 1.1 cm, fatty hilum demonstrating node on the right.

IMPRESSION: 1. Scattered, bilateral, subcentimeter thyroid nodules, none meeting ultrasound criteria for tissue sampling including one which is characteristic of a colloid cyst. If clinically indicated, surveillance imaging of the nodules can be performed if clinically indicated, with the next examination in 6-12 months.

I guess symptoms are not "clinically indicated"?

  

[Xena060870]

Thanks Barb... what is funny is that the hospital I work at does not perform the other antibody test.  I asked my doctor for a lab slip to get the repeat TSI and the other antibody tested... I want to wait until I get into the hyper phase.  I had the radioactive iodine scan done back in 1999 - I don't even remember what the results were back then (my old endocrinologist retired back in 2001).  The problem now is endocrinologists that I go to only refer to the TSH - they won't even consider the uptake scan.  

Hope you have a great Thanksgiving : )

[Barb135]

There are 2 antibody tests that you need to confirm/rule out Hashimoto's... You were negative for TPOab, but you've never had the Thyroglobulin Antibodies (TgAb), that goolarra mentioned... That's the other antibody that has to be tested to confirm/rule out Hashimoto's... Some of us have one or the other of the antibodies and some of us have them both.  Your TPOab is only 4, which would be considered negative, therefore, you really need to get the TgAb tested to make sure you aren't missing the diagnosis.

Have you ever had an uptake scan during one of these "hyper" phases?  

It "is" possible to have, both, Graves and Hashimoto's at the same time.  You can't "beat" either of them, but symptoms can be managed, once you pin down the problem.

It's also important to note that some symptoms, such as palpitations, rapid heart rate, anxiety and depression can be present with "either" hypo or hyper.  I had them horribly when I was at my most hypo.  

While autoimmune diseases "do" tend to run in families, not every member of the family will get the same disease... For instance, I have Pernicious Anemia and Hashimoto's, but my son has Type I diabetes and my daughter has Lupus - all autoimmune.  It's also important to note that once a person has one autoimmune condition, the chances of getting another are much greater than if they had none.

[Xena060870]

Never had Vit D or B tested... something to think about though.  My most recent ultrasound from the other day was pretty much the same, multinodular goiter, with no nodules being big enough to biopsy.  I guess from my own knowledge, I feel that one of those nodules are hot... and it randomly releases thyroid hormone... not enough to cause a significant drop in my TSH though.  My biggest concern however, is the TSI increasing... as it has always been low 25-39, and with my most recent week of what I would consider "hyperthyroid symptoms" it happened to go up to 102.  Yes, I know I need about 20 more points to pass the labs criteria... but at least I felt some validation that there was an increase.  I am also concerned about Graves, with the significant family history.... I guess I am trying to beat it before it presents itself.  (I know... that's the Type A personality in me);

[Super_sally888]

Have you tested vitamin D levels and also B level?

[goolarra]

I don't think your FT4 is high enough to be causing major hyper symptoms, and your FT3 isn't, either.  Another possibility is that you are having transitory spikes in your levels, and by the time you get in to have blood drawn, your levels have already come down again.  

The medical profession does have a love/hate relationship with antidepressants.  They seem to pass them out like candy...certainly more easily than they prescribe thyroid meds...and then they can't get beyond them once you're taking them.  

Weight gain is typically a hypo symptoms.  Do you ever go into a hypo phase?

We're used to it...you can usually tell when someone is hyper in their writing.  Those of us that are hypo can't muster the energy to write so much.  LOL

[goolarra]

TSI is the antibody associated with Graves'.  Though yours is in range, the TSI test has a huge gray area.  People who don't have Graves' have TSI less-than 2%.  122% is the level at which most people, but not all, become symptomatic.  Some will have symptoms with lower results, some higher.

Your FT4 is at 62% of range, which is a little high of the 50% midpoint rule of thumb.  FT3 is at 38% of range, which is low of the 50+% target for FT3.  I wouldn't expect your FT4 level to be causing hyper symptoms; it's not that high, and your FT3 is actually a bit on the low side.  

Do you by any chance have a set of labs from when you felt well to compare these to?  While midrange for FT4 and upper half of range for FT3 are general population guidelines, they don't work for everyone.  If, for example, your "normal" is low in the ranges, then you could be feeling more hyper than other people would with your levels.

Did they test TGab?  

[Xena060870]

Unfortunately, I do not have any labs from when I "felt well"... as I have only had my labs done when I felt like crap.  I can honestly say that since the first terrible postpartum episode in 1999, I have never really felt like myself again.  I see a cycle where I can go as much as about two or three months feeling good... and then one day I wake up and "boom"... thyroid pain, anxiety, palpitations, sweating, shaking, diarrhea... etc.  I was put on Zoloft after the 1999 episode - because I asked the doctor for it, thinking it would help with the anxiety.  I wish I had never done that because every time you go to a doctor and say you take Zoloft, you automatically get put in the "crazy" category by the physician and then all of your complaints are related to your need for Zoloft.  The one thing I can say regarding my postpartum episodes, is that they lasted about six months each.... then I would gradually go into a phase of "feeling semi-normal" without all of the hyper symptoms.  I have never really been depressed (except for the day or two before my period, when I might feel like crying for no reason).  I almost feel as though I have hashitoxicosis... I spend most of my time at a normal thyroid level, and then my thyroid just goes nuts.  I went from a size 0 in 1999 to a size 16 now.  I am not even bothered by the size 16, because I am 6 ft tall, and I can handle the weight.  I work out and eat right (no additives, no preservatives, no MSG, no yeast extract, etc.).
I go for a repeat thyroid ultrasound tomorrow, and I am pretty sure I will get nowhere and I will feel ok, until I get another virus, or have a very stressful event happen, then I will be plagued with the thyroid pain, and the hyper symptoms.  

I know that my messages are long-winded, what can I say, I'm hyper and when I start typing, I can't stop. LOL
I thank everybody for reading about my plight : )
melissa