# Newly Dx Questions



## Ditto (Jul 23, 2014)

Hi all! I'm newly diagnosed, have questions, and quite frankly, I don't know what to ask.. I've been trying to research on my own but am mostly finding generic answers.

My symptoms are fatigue (sometimes extreme), weight gain and difficulty losing, thinning hair, dry skin, chills, anxiety/depression and severe vitamin D deficiency.

I was diagnosed with celiac 2 years ago and have been gluten free ever since. My TTG is within normal now, so I know I'm doing well with my diet.

My TPOAb results have been steadily climbing over the past 4 years but they are only mildly high. My last TPOAb was 80. My TSH has steadily declined over the past 4 years. Results were 1.4, 1.23, 1.05, .55 and, most recently .42. My Vitamin D has been out of control for the same 4 years. My low point was 7. I'm on 50K units twice weekly and my last result was a 23. My T3 and T4 are normal.

My enodocrinologist said my thyroid feels a little bumpy but is not enlarged. However, with an (even mildly) elevated TPOab and having celiac, he has diagnosed Hashimoto's. For now, we are monitoring my TPOAb, TSH, PTH, Vit. D and feeling for changes in my thyroid every 3 months. No ultrasound now as my dr feels they produce false negatives and isn't necessary for now.

With the cost of medical care, I don't want to have tests and dr. appts when they're not necessary. At the same time, I don't want to ignore this when I could possibly feel better. I've met my deductible this year and would prefer to do anything needed now and not have the expense next year.

Are there tests I should ask for? Is it possible I don't have Hashi's as my TPOAb is only mildly high? Will I eventually have to be on thyroid meds and if so, there's contradictory info on best practice of when to start. What should I expect to happen with my test results? Is this Grave's rather than Hashi's?

TIA for any/all help!


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## jenny v (May 6, 2012)

Could you possibly post your most recent labs (all of them) with the ranges? It's hard to tell much without those.I definitely think you should get an ultrasound, esp. if your endo thinks your thyroid feels lumpy (I'm assuming he felt that by touch?). I've never heard anything about an ultrasound providing "false negatives"!


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## CA-Lynn (Apr 29, 2010)

I wonder if something was misunderstood.

There can be false negatives in ultra-sound-guided fine needle *aspiration* [*biopsy results*]. But an ultra sound by itself [without FNA] is probably a prudent step.


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## joplin1975 (Jul 21, 2011)

I agree that an ultrasound would be a good idea. I'm one of those who when in thinking Hashi's and got that dx but has the added bonus of cancer. Rule out the big stuff and then go from there.

I'd also want my free t4 and free t3 tested as well.


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## Ditto (Jul 23, 2014)

Here are the most recent labs with ranges:

TSH = .42 (range is .4-3.99) recent test

TPOAb = 80.0 (range is 0-60) recent test

PTH = 52 (range is 15-65) recent test

T4 Free = 1.1 (range is .7 - 1.7) Last test was Aug 2012

T3 Free = 3.0 (range is 2.2 - 5.0) Last test was Aug 2012

The doctor didn't use the words "false negative". That was my abbreviated version. He said an ultrasound will almost always show something and ususally that something is not problematic but causes more invasive testing which results in no new findings. He would rather wait until I have more noticeable nodelike lumps or an enlarged thyroid. He examined by touch and said my thyroid does not feel smooth and is bumpy, but no big lumps or nodes or goiters.

This is what makes me wonder why I would continue to see him every 3 months. I worry I'm either being treated when there isn't reason OR if he's expecting problems to arise, shouldn't more be done? It seems strange to just pay good money for the same test over and over so frequently. I'm only tested for the celiac antibodies annually.


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## joplin1975 (Jul 21, 2011)

Well, thyroid cancer is rare, but if you have nodules, you don't want to just ignore then until they get big enough to palpitate. That's kinda...pointless. Yes, it might lead to more invasive tests, but if you have cancer, treating the Hashi's is sort of pointless. Also, you can't tell if you have nodules by touch alone. Sometimes you can feel some, if they are large enough and in the right place, but if they are deeper and are growing inward, there's no way to feel them. I'm of the opinion that every Hashi's patient should have a baseline ultrasound as basic care.

Hashi's is, generally, a progressive disease.Many people have increasingly worse symptoms. Sometimes people flip flop from hypo to hyper. I suppose frequent visits might be welcomed by those patients. But, if you are stable, perhaps every six months might make sense.

By the way, according to those numbers, you are still slightly hypo (both free just below mid-range). If you feel good, no issues, but if you are still symptomatic, you might inquire about bumping up your meds.


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## Andros (Aug 26, 2009)

TPO Ab
Mild to moderately elevated levels of thyroid antibodies may be found in a variety of thyroid and autoimmune disorders, such as thyroid cancer, Type 1 diabetes, rheumatoid arthritis, pernicious anemia, and autoimmune collagen vascular diseases. Significantly increased concentrations most frequently indicate thyroid autoimmune diseases such as Hashimoto thyroiditis and Graves disease.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
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Substances not found in normal serum (scroll down to autoantibodies)
http://www.thyroidmanager.org/chapter/evaluation-of-thyroid-function-in-health-and-disease/
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Histologic diagnosis of Hashimoto's
http://emedicine.medscape.com/article/120937-diagnosis
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Hashimoto's Hurthle cells
http://www.pathconsultddx.com/pathCon/diagnosis?pii=S1559-8675(06)71549-2
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http://www.thyroidmanager.org/chapter/hashimotos-thyroiditis/
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http://www.mayoclinic.com/health/hurthle-cell-cancer/DS00660
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Welcome to the board!

I strongly suggest you demand an ultra-sound. Hashimoto's cannot be diagnosed by guessing at it.

Am providing mucho info for you!


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## gulabgang (Dec 28, 2014)

Your relationship with any doctor should always be collaborative. The treatment decisions should be joint. And if you feel you need additional tests or studies, unless a physician has a solid reason why you don't, then you should be able to have them.


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