# Hashimoto's is untreatable for me.



## Reporter (Mar 17, 2011)

Fifteen years ago, age 23, my regular doctor noticed I had a goiter. I have been followed by endos since then with no symptoms until 18 mths ago.

I want to post my labs for this past year and hope someone can help me to understand why I continue to have adverse reactions to thyroid meds.

First time taking .25 of levothyroxine was January, 2011. With that first pill some hours later I developed ringing in my ears, palpitations, muscle pain and twitching and w/in 3 days I was in the hospital. I'd been home asleep and was awakend by a single, fierce pound as though my heart had stopped. Ten mins later there was a squeezing sensation; I was certain I was having a heart attack. After being in hospital for 4 days, extensive work-up revealed no cardiac problems. Later I had more labs. Saw more specialists. Had more imaging. Nothing. Clean bill of health: no lupus, nor RA. Nothing neurological, gastro. Nothing gyno. My labs at the time of hospitalization were:

January 2011 
FT3 2.69 (normal: 2.00-4.20) pg/mL
FT4 0.96 (normal: 0.70-1.90) ng/dL
TSH 0.560 (normal: 0.380-4.000) µIU/mL 
(TPO) Antibody H 28.2 (normal: 0.0-9.0) IU/mL

ER doc didnt think I needed to be on medicine because of the TSH.

September 2011 
FT4 0.87 (normal: 0.70-1.90) ng/dL
FT3 2.33 (normal: 2.00-4.20) pg/mL
TSH 1.360 (normal: 0.380-4.000) 
Vit D 30.20 (normal: 32.00-100.00) ng/mL

December 2011
FT4 0.67 (normal: 0.70-1.90) ng/dL
FT3 1.63 (normal: 2.00-4.20) pg/mL
TSH 0.630 (normal: 0.380-4.000) 
Vit D 24.60 (normal: 32.00-100.00) ng/mL

As of December my endo says I'm now clinicaly hypothyroid and started me on a trial of 13 mcg of Tirosint (levothyroxine)says perhaps it was the fillers in the levo that caused the adverse reactions. So even starting out with a lower dose and an 'ostensibly' purer form of T4, still I am having subtle symptoms and imagine were the dose higher, I would have been in the hospital by now. All day I'm afraid wondering if the meds is hurting me. My doctors in Atlanta never treated me. My doc here as of January thought I needed meds and certainaly as of December said you definitely need med.

I research but still am puzzled by thyroid issues. Is my situation any different from anyone else's? Please help. I am mentally and physically taxed. Weak at times.


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## Andros (Aug 26, 2009)

Reporter said:


> Fifteen years ago, age 23, my regular doctor noticed I had a goiter. I have been followed by endos since then with no symptoms until 18 mths ago.
> 
> I want to post my labs for this past year and hope someone can help me to understand why I continue to have adverse reactions to thyroid meds.
> 
> ...


How do you know you have Hashimoto's?

Sure don't have a clue as to what your doc is thinking. If anything you are hyper and "probably" have antibodies and immunoglobulins that are skewing your TSH, FT3 and FT4.

Have you had any of these tests:?

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

TBII (Thyrotrophin Binding Inhibiting Immunoglobulin)
http://www.ncbi.nlm.nih.gov/pubmed/1969138 (good test for TSHR)

Have you had a sonogram which is essential to check for cancer or other irregularities?

I have seen numbers like your most recent ones and most often they are attributable to what I have mentioned. Cancer or hyperthyroid or both (which is not uncommon.) And that most certainly could be the cause of your adverse reaction to thyroxine.

Has the goiter changed in size?

Are you still in Atlanta?


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## Reporter (Mar 17, 2011)

Thank you so much for your reply.

The PA told me that based on the antibodies, I do have Hashimoto's and that with the abnormal FT3 and FT4 levels I am hypo. She said the TSH is in the normal, not supressed _(although some 3 years ago a couple of times it was almost undetectable but follow-up labs were normal. _

As of recent based on the posted labs I was certain I was headed hypo due to the thinning-out around my hairline and a menstrual irregularity last month for the first time. Saw gyno. Biopsy and hormones are fine. Told it was thyroid related.

The posted labs are the only thyroid tests to be run and endo says the only ones that I needed. ANA normal three times past year. RA normal.

April 2010 after being referred by an ENT to an Endo in ATL the endo's office staff person mentioned possibility of needing biopsy but when I arrived for ultrasound, what the ENT thought he'd seen (a nodule) was not visible to the ENDO nor the imaging specialist. Told to relax and that if anything I was going hypo at some time in the future.

I was later told that was probably inflammation due to thyroiditis. 3 imagings since then showed no increase in size, that any nodules I have are, in fact, smaller. My endo reassured me that "IF you had thyroid cancer, we would have known by now."

The latest sonogram (Sept 2011) revealed thyroid 2.0 X 4.7 X 2.3 cm and left measuring 4.3 x 2.2 cm. There is a hypoechoic nodule seen inferiorly measuring up to 6 mm in diameter. Left is heterogeneous with small hypoechoic nodule at the inferior left thyroid. Question of large right nodule versus heterogeneity in the right thyorid. Question of increased color-doppler flow on the left. Said it was consistent with having a goiter.

Andros I hope this is enough to help and apologize if it's a bit disjointed. At age 39 my memory seems to be failing me and my communication is poor.

Let me know if I need to clarify or simplify any thing at all. My main concern is cancer or not knowing if I'm hyper or hypo or if I need treatment. Cardiologist says my heart fine per echo stress heart cath...etc. Physically, however, I know I'm not.

Based on my labs are they puzzling: I mean either I'm hypo or hyper. Simple right?
I appreciate your feedback.


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## Reporter (Mar 17, 2011)

No, I am in Fayetteville NC where there is one endocrinologist. I will return to Atlanta for a second opinion.


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## Andros (Aug 26, 2009)

Reporter said:


> Thank you so much for your reply.
> 
> The PA told me that based on the antibodies, I do have Hashimoto's and that with the abnormal FT3 and FT4 levels I am hypo. She said the TSH is in the normal, not supressed _(although some 3 years ago a couple of times it was almost undetectable but follow-up labs were normal. _
> 
> ...


That is my concern as well. Ultra-sounds "sometimes" have their limitations and I don't agree about the statement made that, "We would know by now!" How ludicrous is that?

RAIU (radioactive uptake scan) would be a very good idea at this point.

TPO is "suggestive" of many things and one of those things is cancer. I do not agree that it is a definitive diagnosis for Hashimoto's. FNA is more likely to produce a definitive diagnosis yay or nay "if" Hurthle cells indigenous to Hashimoto's are present.

Here is info which I hope you read.

cancer TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract
http://www.wikigenes.org/e/gene/e/7173.html

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

Anti-microsomal Antibodies- TPO Ab
Negative test is normal; you should not have any of these antibodies. And the healthy person does have a low titer of TPO. (not to be confused w/TPO Ab)

Hate to give you so much "homework" but that is what I am here for. We need to help our posters to be in a position to help themselves.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

I take it when you say ANA was normal that you did not have any? Or did you have some that was within the suggested range? You should not have any ANA antibodies.

Hope I have been helpful.

Here is info on the best docs in Atlanta. If anybody knows, these folks do.

Atlanta group
http://health.groups.yahoo.com/group/Georgia_Thyroid_Groups/


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## Reporter (Mar 17, 2011)

Ludicrous for sure, Andros.

Well, I thank you so much. I've been on a medical merry-go-round for 18 months and today while I tried to enjoy a sedate state, still my mind was a jumble of suppositions and possibilities, worrying without end, feeling distant and numb.

I was hoping to hear back from you or someone by the time I returned home. The support on this forum goes a long way in helping to empty some of the worries from my mind (those unanswered questions) and kind of makes things seem less crucial at least for a while.

I will make an appointment with an Atlanta specialist the coming week; I think they understand me better down there anyway.

Immense appreciation :hugs:


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## HeidiBR (Apr 4, 2010)

My endo is out of Fayetteville and is really a great doctor. Let me know if you want specifics.


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## Reporter (Mar 17, 2011)

My posts have been a bit word so thanks for taking the time to learn about my situation and caring enough to reply. I'd be very interested to know the specifics.


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## Reporter (Mar 17, 2011)

What specifically is it about the most recent labs might point towards cancer? I thought that was the purpose of the imaging tests.

My endo did not feel the need to perform the TSI, so I went to my GP. He ran that test it was negative and another test for TPO which had increased to 99. I'm awaiting the results of the thyroid ultrasound done about ten days ago, still the endo has not reviewed I was told on yesterday.

Frustrated.

So that's one question. The other, based on my most recent labs (December), am I hypothyroid? My free's are low, below normal, but my TSH is normal. How is that hypo?
Also I was in er yet again due to the palpitations and was told my thyroid levels Free T's as well were normal even without taking the meds.

Hope this makes sense.


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## joplin1975 (Jul 21, 2011)

I'm sorry you are struggling so much. It's frustrating.

I think Andros is right about wanting to rule out cancer. The u/s are helpful is telling us what the thyroid looks like, but it can't tell you if those nodules are functioning normally as irritated thyroid tissue, under- or non-functioning, over hyper-functioning. The point of the RAIU is to determine those characteristics.

When you mentioned a biopsy, are you talking about a FNA/biopsy of the thyroid?

My labs were more or less normal, save for a slightly elevated TSH. My RAIU showed the nodules to be cold or non-functioning. My endo thought my blood work was "indicative of Hashimoto's" and put me on 50 mcgs of Synthroid and, in the words of my husband, "It was like living with a meth addict." Quite unpleasant.  Anyway, a FNA determined I did have Hashimoto's...but I also had cancer which had invaded the lymph nodes.

I really think you want to rule out cancer first, because trying to medicate Hashimoto's when so many other things are out of whack is going to prove to be a very frustrating situation. Do you have measurements on the right nodule?


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## Andros (Aug 26, 2009)

Reporter said:


> What specifically is it about the most recent labs might point towards cancer? I thought that was the purpose of the imaging tests.
> 
> My endo did not feel the need to perform the TSI, so I went to my GP. He ran that test it was negative and another test for TPO which had increased to 99. I'm awaiting the results of the thyroid ultrasound done about ten days ago, still the endo has not reviewed I was told on yesterday.
> 
> ...


High TPO is "suggestive" of several things. One of them is cancer!

Anti-microsomal Antibodies- TPO Ab
Negative test is normal; you should not have any of these antibodies. And the healthy person does have a low titer of TPO.
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

This antibody, historically referred to as the anti-microsomal antibody, is established as a sensitive tool for the detection of early subclinical autoimmune thyroid diseases, follow up of the response to immunotherapy and identification of at-risk cases for autoimmune thyroid diseases [8].

http://www.biomedcentral.com/1471-5945/6/3

TPO Ab should be negative, 0
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

I sure wish you would get copies of your tests as they will say for example that TSI is negative if it is "below" the range given. But, you should not have any TSI. See?

And your FREES. Once again, where in the range? It makes a "huge" difference.

TBII is important test too as it opposes the TSI.

TBII (Thyrotrophin Binding Inhibiting Immunoglobulin)
http://www.ncbi.nlm.nih.gov/pubmed/1969138

Hope the above is helpful to you.


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## Reporter (Mar 17, 2011)

SONOGRAPY of 12/10/2010
FINDINGS: Sonography of the thyroid gland shows mildly enlarged lobes with the right lobe measuring 4.7 x 2.1 x 1.6 cm and the left lobe 4.8 x 1.9 x 1.7 cm. There is a small hypoechoic nodule in the midportion of the right lobe measuring 11 x 8 x 4 mm and a tiny area of nodularity in the mid to lower pole of the right lobe measuring 2 x 2 by 3 mm. There is a small hypoechoic nodule in the left lobe measuring 6 x 6 x 4mm. They thyroid isthmus is normal at 3.3 mm thickness.
IMPRESSION: Mildly enlarged heterogeneous thyroid gland with small nodules bilaterally consistent with history of a goiter.
*Note in April 2010 ENT did an ultrasound. Referred to Endo for possible biopsy a week later. However, endo did not see the nodule and indicated to me that the ENT 'thought' he saw a nodule. (These were my doctors in Atlanta)
My endo here in Fayetteville, NC said the SONOGRAPHY of 12/10/2010 was actually better . That the nodule in question had decreased in size.
My recent sonography January, 2012, the radiologist said she saw a nodule measure 1.9. I have a follow-up with my ENT (here in Fayetteville) on Monday where I will get his impression of the report as well as receive the results of my most recent labs. Those labs are only FREE's as well as TSH. He did not feel I needed the TSI. Again, it was my GP who ran the tests below for me.
THYROID PEROXIDASE AB (Final, 1/6/2012)
Report Result Ref. Range	Status
TPO AB 99.4 <35.0 High
*THYROID STIMULATING IMMUNOGLOBULIN (Final, 1/6/2012)
Report Result Ref. Range	Status
TSI 103 <140 Normal
*Okay, Andros, this is what you're saying. Now it makes sense. Got you! Thanks!

I appreciate you both. By the way .25 of levo had me crawling up the walls but my endo here in Fayetteville ignored that, said the dose was too small to cause symptoms.


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## Reporter (Mar 17, 2011)

One more thing...

The imaging specialist who performed the ultrasound this month said that the nodule measuring 1.9 is probably what my ENT saw back in April of 2010, said it could have easily been missed. What is she talking about? I mean either the nodule is there or it isn't or it measures larger when inflammed and not so large when it's not....


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## joplin1975 (Jul 21, 2011)

Nodules can change size...they can come and go, depending on what's causing them. And, again, u/s has limitations, so the ability to view it could depend on who's doing it.

I presume the 1.9 nodule is milimeters? Not centimeters? It if is cms, you really should consider having that biopsied. Anything below 1cm is questionable with regard to the efficiency of the biopsy. But I would still inquire about RAIU with that level of TPO.

I absolutely believe that 25 mcgs could cause symptoms. I know it would have with me!


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## Reporter (Mar 17, 2011)

Yes, it needs to be biopsied. It was centimeters which I'm believing also is what the ENT saw back in April 2010.

I will inquire and push for the RAIU. I did have one of those I know it's been at least ten years ago. One nodule, but it was hot.

I do not have those medical records so am wondering if this may be that same nodule, but I tell you 10 years ago I was feeling good.

I am going to my endo's now to see if I can get an appointment for tomorrow or Friday.

I really appreciate you all--nice to know I'm not alone. I thought I was some kind of special situation being that I could not tolerate a dose of .25. Even at 13 mcg I was very symptomatic after 45 minutes in my system (that was another recent trial).

I'm going to lose this witch doctor. I have an appointment with Duke Medical, 1.5 hours away. Just gotta hope for better.


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## Andros (Aug 26, 2009)

Reporter said:


> SONOGRAPY of 12/10/2010
> FINDINGS: Sonography of the thyroid gland shows mildly enlarged lobes with the right lobe measuring 4.7 x 2.1 x 1.6 cm and the left lobe 4.8 x 1.9 x 1.7 cm. There is a small hypoechoic nodule in the midportion of the right lobe measuring 11 x 8 x 4 mm and a tiny area of nodularity in the mid to lower pole of the right lobe measuring 2 x 2 by 3 mm. There is a small hypoechoic nodule in the left lobe measuring 6 x 6 x 4mm. They thyroid isthmus is normal at 3.3 mm thickness.
> IMPRESSION: Mildly enlarged heterogeneous thyroid gland with small nodules bilaterally consistent with history of a goiter.
> *Note in April 2010 ENT did an ultrasound. Referred to Endo for possible biopsy a week later. However, endo did not see the nodule and indicated to me that the ENT 'thought' he saw a nodule. (These were my doctors in Atlanta)
> ...


See, you do have TSI.

Please read these links.

Substances not found in normal serum
http://www.thyroidmanager.org/Chapter6/Ch-6-6.htm

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

That is why I pressed you and I sure hated to cause you extra work but I have suspected the whole time that you had TSI.

And you most likely have the TBII which is keep the TSI at bay (somewhat.)


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## Reporter (Mar 17, 2011)

Not at all astonished, had a feeling you would be right about this. I believe the first time I posted was the first part of 2011--and, yes, it was on this board. Even then you suspected TSI or hyper you said. Because of my symptoms I believed so as well but when I told my endo he kind of stared at me like I was growing a third eye.

I mean aren't they supposed to be the experts?

At any rate I had the labs today TSH Free T3 and Free T4. The results will be back tomorrow (haven't been on any meds), meeting with the endo to discuss those results as well as that recent ultrasound with the 1.9 cm nodule (that certainly has to be biopsied)

I do have a second opin apt w/an endo at Duke on the 10th of Feb and will see my ENT on the 27th of this month.

So, is it possib to be both hyper and hypo. If so, I'd imagine that is not treatable......confusing....anyway, I wish you could be my spokesperson at tomorrow's appointment :hugs:


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## Reporter (Mar 17, 2011)

....just wanted to say I just now referred to a thread that I'd begun, March last year, so a lot of my questions were answered there. I sure wish I had gone back because a whole lot would have made sense to me way before now.

I started the post and somewhere along the way I think I gave up on whatever was going on with me.

Thank you all. Tell you what, I will stay close to this board from now on.


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## Reporter (Mar 17, 2011)

Went for follow-up today.
Witch doctor said ultrasound of January 9, 2012 is 'essentially the same' as that from September 2011. And that "about that nodule, the dominant one" measuring 1.9 cm, well you have multiple nodules, five or six. He said it makes no sense to have the FNA on the dominant nodule that in his experience removal of the whole gland patients have found that the dominant nodule isn't malignant and that one millimeters could be the malignant one.

Says I could "just take the thing out" that way I'd never be worried with ultrasounds again, no more suppositions and possibilities and, of course, I certainly would be on meds for the rest of my life. Okay, so I already knew that much.

I told him that as of recent I've had a few episodes when I had difficulty swallowing a small pill (I've started back taking Selenium 200 mcg but did not mention to him because it's unlikely I'll be seeing him after my apt w/the specialist at Duke)....anyway, mention of swallowing the pill, that problem along with occassional hoarseness....he says, nah, it is just inflammation. No worries.

As you see the December labs were not normal. Prob first part of December I began taking Selenium for thyroid support. My labs have been tested twice since the last report and have been normal (meaning the TSH and the Free's) wonder if it's the Selenium. I know it's not a cure but rather than the thyroid meds I take the Selenium. No side effects.

Andros about the TSI, he says "WHAT?!" Who did that test for you: is he local? Dr. _____'s office? I said, no, just someone far away. So he chuckled again and I say oh but there shouldn't be ANY TSI in the blood right? (Blank stare and he laughed his way on to the next subject).

So he says based on all my labs the reason I should take the TIROSINT or levo is to keep the levels suppressed, that I'm currently Euthyroid, last month I was hypo, said that fluctuation is expected in the presence of antibodies (because I have Hashimotos). I didn't get into needing an FNA to be sure that I have Hashi or the benefits of RAIU. It was futile. Thing about the guy he listens very intently but he will NEVER agree.

I didn't get copies of any reports. He seems put off by my asking so I'll get the other doc to request them but he did allow me to write down the lab results for Jan bloodwork because I wasn't leaving without some numbers (he calls me the accountant: numbers, Numbers, NUMBERS! he says).

December 2011 (thought I'd include those here also)
FT4 0.67 (normal: 0.70-1.90) ng/dL
FT3 1.63 (normal: 2.00-4.20) pg/mL
TSH 0.630 (normal: 0.380-4.000) 
Vit D 24.60 (normal: 32.00-100.00) ng/mL

Jan 9, 2012
FREE T4 .78 (normal: 0.70-1.90) ng/dL
FREE T3 2.35 (normal: 2.00-4.20) pg/mL
TSH .940 (normal: 0.380-4.000)

Vitamin D3 still low at 24 but I've only just began taking that again. He says rather than the 10,000 IU's (once weekly per the instructions on bottle) that I needed to start taking 10,000 IU's daily!! since my levels are miserably low. (What you talkin 'bout Willis?!)

So, yeah, do that and if you elect not to remove the thyroid you will have to FORCE yourself to take the meds, "just give it 10 days." So I told him but that stuff has me feeling like I've ingested speed LOL just repeating what Travis had written in one of his posts, because that is very true for me also. Well this doctor laughed and suggested I use the energy cleaning and that I should tell my family to "stay out of your way" referencing the speed remark.

Funny, right.
So on to my second opinion next week. Third opinion Feb. 10th @ Duke.


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## Andros (Aug 26, 2009)

Reporter said:


> SONOGRAPY of 12/10/2010
> FINDINGS: Sonography of the thyroid gland shows mildly enlarged lobes with the right lobe measuring 4.7 x 2.1 x 1.6 cm and the left lobe 4.8 x 1.9 x 1.7 cm. There is a small hypoechoic nodule in the midportion of the right lobe measuring 11 x 8 x 4 mm and a tiny area of nodularity in the mid to lower pole of the right lobe measuring 2 x 2 by 3 mm. There is a small hypoechoic nodule in the left lobe measuring 6 x 6 x 4mm. They thyroid isthmus is normal at 3.3 mm thickness.
> IMPRESSION: Mildly enlarged heterogeneous thyroid gland with small nodules bilaterally consistent with history of a goiter.
> *Note in April 2010 ENT did an ultrasound. Referred to Endo for possible biopsy a week later. However, endo did not see the nodule and indicated to me that the ENT 'thought' he saw a nodule. (These were my doctors in Atlanta)
> ...


If you are hyperthyroid, it sure would cause symptoms and "even" if a hypo person is on that small of a dose for a long time w/o labs and needed titration; that person can become very very ill and I do mean ill.


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## Andros (Aug 26, 2009)

Reporter said:


> Went for follow-up today.
> Witch doctor said ultrasound of January 9, 2012 is 'essentially the same' as that from September 2011. And that "about that nodule, the dominant one" measuring 1.9 cm, well you have multiple nodules, five or six. He said it makes no sense to have the FNA on the dominant nodule that in his experience removal of the whole gland patients have found that the dominant nodule isn't malignant and that one millimeters could be the malignant one.
> 
> Says I could "just take the thing out" that way I'd never be worried with ultrasounds again, no more suppositions and possibilities and, of course, I certainly would be on meds for the rest of my life. Okay, so I already knew that much.
> ...


This is incredibly sad; it truly is. You had to pay this guy; right?

Here is info on the D; give it some thought, would you?

Vitamin D
http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php


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## Reporter (Mar 17, 2011)

Thank you so much, Andros.

Well after reading your replies all I can do is drop my head and cry.

You told me about the Vit D research early last year. I read up on it. Told my doctor who naturally dismissed it. I've since been taking it less.

It ostensibly is essential for good health, but is 'counterproductive and harmful' in the long run. I don't know: when my levels are between 15-24 I feel just awful but don't know if that's hyper hypo or low Vit D. Endo says it's the miseraly low Vit D. Okay. Whatever.

So here's my plan:

Second opinion follow-up w/ENT and new endocrinologist

Request FNA, RAIU, Thyroglobulin Ab (and/or TBII).

....and the dumbest thing this doc said on yesterday was even if you had thyroid cancer it would've had to be there for a very long time before it invaded in other part of your body. Encouraging, ain't it?


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## Andros (Aug 26, 2009)

Reporter said:


> Thank you so much, Andros.
> 
> Well after reading your replies all I can do is drop my head and cry.
> 
> ...


That doc yesterday was a trip!!! What he said about cancer is waaaaaaaaaaaaaaaaay out there!

For one thing, there are some very fast moving thyroid cancers. I don't like to denigrate others but this guy here is definately NOT a keeper.

Do you live where there is sunshine? If you do, just get out in it and put your face to the sun for a while. 10 to 15 minutes a day is good. And can you eat eggs? Egg yolks are high in D. So is yogurt and other dairy products.

Here is a list.
http://whfoods.org/genpage.php?tname=nutrient&dbid=110

It would appear that dietary sources do not cause the problem that taking high doses of chemically manufactured D does. Mainly because you are not getting lots of IU all at one time.

We "have" to get you better. We "have" to get you a good doctor to do that. You know this, of course!


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## joplin1975 (Jul 21, 2011)

Wow, Reporter...I'm very sorry. That's an...interesting perspective on things. *COUGHCOUGHCOUGH*

I mean, sure, most thyroid cancers are slow moving but some are not and and even if you did have cancer and it was non-aggressive, who really wants to have cancerous cells flaoting about their body?? That's just asinine...sorry, but it is!

I do hope you have better luck with doctors #2 and 3!!


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## Reporter (Mar 17, 2011)

Hi family,
I thank you both so very much. I can't say it enough. 
I went away for a couple of days hoping this would all seem less crucial, because, really, I'm tired. Very tired of the uncertainty. No quick answers. Biopsies.

Yeah, I had a colonoscopy and endoscopy on yesterday. I've had a sluggish colon for a year now. Lots of nausea. Turns out my colon is inflammed with Super ulcers per the report, and also my stomach lining is inflammed. Esophagus normal. So I'm waiting on the biopsy results (and wonder if I'm giving up). Two daughters...family's far away...depressed.

This morning in my inbox are the results of the January ultrasound. I'm not believing this. And while I'm not a specialist in reading these type reports I don't believe that it is "essentially the same" as the one in September. The endo SAID "essentially the same" okay. There are two dominant bilateral nodules. Centimeters. Both. Centimeters.

My goodness how can I be okay with all that's going on. I try to be sanguine. I'm hoping, believing, but I don't know....the results have me concerned and had I not DEMANDED the report I never would have known there were two nodules that are dominant. Also this report says very little compared to all others. Nothing about hypoechoic or heterogenous. Perhaps not important....?
There is a part of me that wants to get the whole thing taken out.

HISTORY

: Hypothyroidism.

FINDINGS: The right lobe of the thyroid measures 5.3 x 1.9 x 2.4 cm. The left lobe measures 4.9 x 1.7 x 2.0 cm. The thyroid parenchymal tissue in general is mildly heterogeneous. There is a dominant nodule in the mid pole of the right lobe measuring 1.8 x I I x 1.9 cm. Therc is a dominant nodule in the mid pole of the left lobe measuring 2.1 x 1.4 x 1.6 cm.

IMPRESSION

:

1. Mild thyromegaly.

2. Dominant bilateral nodules.

This document has been electronically reviewed and signed.

1/18/2012 12:02 PM

Free T4

FT4 0.78 (normal: 0.70-1.90) ng/dL

Free T3

FT3 2.35 (normal: 2.00-4.20) pg/mL

TSH 0.940 (normal: 0.380-4.000)


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## Andros (Aug 26, 2009)

Reporter said:


> Hi family,
> I thank you both so very much. I can't say it enough.
> I went away for a couple of days hoping this would all seem less crucial, because, really, I'm tired. Very tired of the uncertainty. No quick answers. Biopsies.
> 
> ...


Those labs are just barely in normal range and we all know that the ranges are to establish a baseline and to detect movement. There are a few exceptions to this rule as there are to any rules; of course.

You are very very ill. I don't know how you get out of bed.

I can't remember if you have had antibodies and immunoglobulin tests?

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

And as far as the ultra-sound goes; can you find out if the nodules are solid, cystic or what? Calcified rim?


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## Reporter (Mar 17, 2011)

Yes, took a year but I had my GP do the test (per your recommendation) as my endo said it was unnecessary and I do have TSI. I showed the results to my endo, who said TSI is irrelevant and left it at that. Again, I am going to a new endo at Duke on Feb. 10. Even the most recent ultrasound Jan. 2012 is substandard. I will be seeing my ENT about this on Friday. The ENT does agree I need the biopsy but now I apparently need two biopsies.

Anyway here they are:

*THYROID STIMULATING IMMUNOGLOBULIN (Final, 1/6/2012)
Result 103 
Range <140 
Status Normal (but of course there shouldn't be ANY)

January 2011 
FT3 2.69 (normal: 2.00-4.20) pg/mL
FT4 0.96 (normal: 0.70-1.90) ng/dL
TSH 0.560 (normal: 0.380-4.000) µIU/mL 
(TPO) Antibody H 28.2 (normal: 0.0-9.0) IU/mL

September 2011 
FT4 0.87 (normal: 0.70-1.90) ng/dL
FT3 2.33 (normal: 2.00-4.20) pg/mL
TSH 1.360 (normal: 0.380-4.000) 
Vit D 30.20 (normal: 32.00-100.00) ng/mL

December 2011
FT4 0.67 (normal: 0.70-1.90) ng/dL
FT3 1.63 (normal: 2.00-4.20) pg/mL
TSH 0.630 (normal: 0.380-4.000) 
Vit D 24.60 (normal: 32.00-100.00) ng/mL
January 2012

FT4 0.78 (normal: 0.70-1.90) ng/dL
FT3 2.35 (normal: 2.00-4.20) pg/mL
TSH 0.940 (normal: 0.380-4.000)

SONOGRAPHY Jan 2012 
FINDINGS: The right lobe of the thyroid measures 5.3 x 1.9 x 2.4 cm. The left lobe measures 4.9 x 1.7 x 2.0 cm. The thyroid parenchymal tissue in general is mildly heterogeneous. There is a dominant nodule in the mid pole of the right lobe measuring 1.8 x I I x 1.9 cm. Therc is a dominant nodule in the mid pole of the left lobe measuring 2.1 x 1.4 x 1.6 cm.
IMPRESSION: 
1. Mild thyromegaly.
2. Dominant bilateral nodules.

SONOGRAPHY Sept 2011 
FINDINGS: The right thyroid measures 2.0 X 4.7 X 2.3 cm and is heterogeneous in echotexture. Color-doppler flow appears normal. There is question of a large central nodule versus large area of heterogeneity within the right thyroid. The left thyroid measures 4.3 x 2.2 cm in longitudinal dimensions. There is a hypoechoic nodule seen inferiorly measuring up to 6 mm in diameter. The left thyroid is heterogeneous. There is question of increased color-doppler flow. The thyroid isthmus measures up to 5 mm in thickness. 
IMPRESSION: Heterogeneous thyroid with small hypoechoic nodule at the inferior left thyroid. Question of large right nodule versus heterogeneity in the right thyroid. Question of increased color-doppler flow on the left.

SONOGRAPY Dec 2010
FINDINGS: Sonography of the thyroid gland shows mildly enlarged lobes with the right lobe measuring 4.7 x 2.1 x 1.6 cm and the left lobe 4.8 x 1.9 x 1.7 cm. There is a small hypoechoic nodule in the midportion of the right lobe measuring 11 x 8 x 4 mm and a tiny area of nodularity in the mid to lower pole of the right lobe measuring 2 x 2 by 3 mm. There is a small hypoechoic nodule in the left lobe measuring 6 x 6 x 4mm. The thyroid isthmus is normal at 3.3 mm thickness.
IMPRESSION: Mildly enlarged heterogeneous thyroid gland with small nodules bilaterally consistent with history of a goiter.


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## Andros (Aug 26, 2009)

Reporter said:


> Yes, took a year but I had my GP do the test (per your recommendation) as my endo said it was unnecessary and I do have TSI. I showed the results to my endo, who said TSI is irrelevant and left it at that. Again, I am going to a new endo at Duke on Feb. 10. Even the most recent ultrasound Jan. 2012 is substandard. I will be seeing my ENT about this on Friday. The ENT does agree I need the biopsy but now I apparently need two biopsies.
> 
> Anyway here they are:
> 
> ...


Thank you so much. Sometimes I am just brain-dead (but I should fit right in here, lol!)

I think you need to request FNA. Your labs are strange. I have seen them like that before and it causes me to want to urge you to make sure you don't have cancer.


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## Reporter (Mar 17, 2011)

I am working on that I really am Andros.
Tell me though, what is is strange. That would help me to better understand my labs. To me they are numbers. I see numbers.

In the past five, seven years ago I was told I was both hypo and hyper. I've had RAIU and that was fine. The nodule in question was hot. Think that was back in 2005 or so.

There have been times my TSH was barely detectable. I was told also a number of times by specialists in Atlanta I have subclinical hypo or hyper (can't remember which one).

I value your opinion. Tell me what is strange, because no one else is talking.


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## Reporter (Mar 17, 2011)

If the labs are strange, I don't know what's strange about them. I just don't have the knowledge. Free T's kind of low, TSH normal, I have TSI and I have TPO. Don't know if that makes me hypo, hyper, subclinical, treatable, untreatable....

But my ultrasounds, yeah, they are strange and I've thought that for a while now. Hard to believe though that neither the ENT nor endo pushed for FNA sooner.

This link provided a lot of info. How long this has been going on, I don't know. So scared.

http://theoncologist.alphamedpress.org/content/13/2/105.full


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## Octavia (Aug 1, 2011)

Reporter, it is very easy to get confused when looking at lab results, especially when the doctor doesn't explain them.

There are some links in this thread that you may find helpful while reading your lab results:

http://www.thyroidboards.com/showthread.php?t=4969


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## Reporter (Mar 17, 2011)

Thank you so much. I would look at these in detail.


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## Andros (Aug 26, 2009)

Reporter said:


> I am working on that I really am Andros.
> Tell me though, what is is strange. That would help me to better understand my labs. To me they are numbers. I see numbers.
> 
> In the past five, seven years ago I was told I was both hypo and hyper. I've had RAIU and that was fine. The nodule in question was hot. Think that was back in 2005 or so.
> ...


FT3, FT4 and TSH are all low. That is not normal. You have TSI and TPO Ab. That is not normal. Could be pituitary; could be cancer.

January 2012

FT4 0.78 (normal: 0.70-1.90) ng/dL
FT3 2.35 (normal: 2.00-4.20) pg/mL (3.10 is mid-range here) 
TSH 0.940 (normal: 0.380-4.000)

Believe me; I am worried for and about you. Very much so.


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## Brucergoldberg (May 23, 2011)

Reading this posts reminds me of just how F'n much i hate endos. I have seen 8 of them.

Reporter - do you still have the ear ringing? that is my worst symptom and has been since i started the thyroid medicine 2 years ago. Bruce


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## Reporter (Mar 17, 2011)

Brucergoldberg - *that *endo I was seeing would suggest the ringing in the ears is related to anxiety, that it's clearly *not *in line with thyroid disease. I will tell you though I am not on thyroid meds; however, every time I take a dose, 45 minutes later I get the ringing, palpitations, muscle spasms in addition to leg weakness, but he says, nah, but you and I know better.

Andros and Octavia - 
Biopsy finally scheduled thanks to ENT. Seeing new ENDO at Duke this Wed.

Was unsure what was going on with me back in 2005 so requested these meds. Got them in the mail tday

2005

My (TPO)Ab was 14 where 0-34 was the ref range.

TSH = 0.06

Ultrasound - both lobes were heterogeneous without distinct nodules. 2012 I now have multinodules.

Uptake and scan showed thyroiditis. 'Depressed uptake at 6 and 24 hrs, likely globular appearing gland without evidence of any photo-intense or photo-penic defects identified.'

SUBCLINICAL HYPERTHYROIDISM is what I was told based on my TSH and other labs (I didn't post here okay).

So my question: If my TSH is pretty low to supressed and having both the TSI and TPO antibodies, nodules and inflammation, does anyone feel I might need to remove the gland? I'll wait probably on the results of the upcoming biopsy. But with chronic inflammation, I know that's toxic in itself and can lead to things I don't want to have.

Also from a treatment standpoint, no thyroid puts me hypo, the TSH would raise some or a lot, correct? But what about those TSI antibodies. I don't want to remove this gland and still my body rejects meds.

My mind is struggling. Help.


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## Reporter (Mar 17, 2011)

Brucergoldberg - one thing I didn't mention. ENT work-up, the full scope of tests showed no issue with inner ear problems. Something I've read over the years that may interest you is dysautonomia. Do a search on that.

I don't think that's what I have. The only time the ringing occurs is when I am feeling hyper and that is not often--well, let me take that back. Depending on the severity of the hyper state, the ringing can be insane. Otherwise, it comes and goes. If it is not particularly bothersome, I ignore it, and hope it won't be followed by palpitations and weakness.

Thyroid meds DEFINITELY set it off. I've tried thyroid meds twice in the fifteen years I've been having problems. Before January 2011 my docs in Atlanta would not prescribe meds. They kept saying wait. You're subclinically hyper.

Move to NC and in January 2011 .25 of levo landed me in the hospital 4.5 days. I awakened to a POUND, not a regular palpitation. Minutes passed and I was sure I was a goner. It was wild, crazy and embarassing.

A fat hospital bill. No sympathy from the endo. Thing about it, I called them as soon as I experienced symptoms and they assured me it wasn't the medicine. 4.5 days later they were still saying it wasn't the medicine.

The second time I tried thyroid meds Dec 2011, convinced by the endo that I needed it and had to have it, that we would try a much smaller dose, 13 mcg the smallest effective dose that can be prescribed. Well, the same symptoms, just not as pronounced. I was told to continue to take it, that I needed it.

Right. Fired!!!!

So the only thing that comes to my struggling mind is to just get the thing taken out. I'll see what the new endo says and a few opinions from this board, bit more research....

See what happens.


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## bigfoot (May 13, 2011)

This is my newbie $.02, but if I was in your shoes and a doc paved the way to having it removed, I would have had it done yesterday. (And all of it, not just 1/2 or the other.)

You get to rule out the "C" word in one foul swoop, and effectively set the stage for hypothyroidism which is (supposedly) more easily controlled and not as rough on your body. Not that surgery isn't without risks, but it's something to think about, IMHO.

hugs6


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## Andros (Aug 26, 2009)

Reporter said:


> Brucergoldberg - *that *endo I was seeing would suggest the ringing in the ears is related to anxiety, that it's clearly *not *in line with thyroid disease. I will tell you though I am not on thyroid meds; however, every time I take a dose, 45 minutes later I get the ringing, palpitations, muscle spasms in addition to leg weakness, but he says, nah, but you and I know better.
> 
> Andros and Octavia -
> Biopsy finally scheduled thanks to ENT. Seeing new ENDO at Duke this Wed.
> ...


It is my humble opinion that we should wait for FNA results and then think about a game plan.


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## Reporter (Mar 17, 2011)

They called tday...spot came available so I will hve fna tmor...orig sched 1st wk March...

I am at least a bit nervous. Hoping, praying radiologist is experienced enough to get all that he needs for a good sample.


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## Andros (Aug 26, 2009)

Reporter said:


> They called tday...spot came available so I will hve fna tmor...orig sched 1st wk March...
> 
> I am at least a bit nervous. Hoping, praying radiologist is experienced enough to get all that he needs for a good sample.


I am hoping and praying w/you! Count on it. Don't forget to use plenty of ice in the aftermath.


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## Reporter (Mar 17, 2011)

Awwww thank you, thank you, thank you. The hug was successful. I needed that.


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## Andros (Aug 26, 2009)

Reporter said:


> Awwww thank you, thank you, thank you. The hug was successful. I needed that.


We all need it. I love hugs! They make me smile!


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## Reporter (Mar 17, 2011)

RADIOLOGY REPORT FINDINGS:
Ultrasound evaluation of the bilateral neck. A discrete dominant nodule was not seen within the right lobe of the thyroid gland. Review of the prior ultrasound from VRI showed a questionable nodule versus underlying heterogeneity. This likely just represents heterogeneous parenchyma in this region without a discrete nodule. Within the left lobe of the thyroid gland, there is a hypoechoic solid nodule seen superficially within the mid portion which was targeted for fine needle aspiration. The tips of the needles are identified within the nodule.

IMPRESSION: Successful ultrasound-guided FNA of a solid hypoechoic nodule within the left lobe of the thyroid gland.

PATHOLOGY REPORT: Negative for malignant cells. Specimen consists of benign follicullar cells, hemosiderin-laden macrophages, colloid, and blood. This pattern is consistent with a colloid nodule.

Glad it's over.

So now that the old endo is fired, I have since visited with the new one at Duke. Thinks I may have central hypo. Says, certainly, I never should have been treated and that is why I had the adverse reaction to the meds January 2011 (hospitalized) and Dec. 2011 (smaller dose, still adverse reaction).

Last check, though, MRI showed no issue with pituitary.That was a good 5-7 years ago. Internist thought something was going on there, but turned out to be fine. Left him puzzled.
Asked about the TSI in my blood(previously tested by my internist and rejected by my old endo). Well, she says that's what it is: normal......hm, enlightening. Hm, but I shouldn't have any, right....no problem, it's normal.....

So she ran basic labs. All within range.
Come back in six months. 
Guess some day the thyroid will wear out and I'll become hypo
The hyper phases scare me because I worry about a thyrotoxic storm, although my levels T3 and T4 are on the lower side of normal...
Still have some issues swallowing pills so that with inflammation and the hyper phases....wondering if it may need to be taken out. Hard decision.
Continuing 200 mcg day Selenium
And Andros I'm taking Carlson's brand Cod Liver Oil Excellent source of Vitamin A and Vitamin D3 2,000 IU's per tspn----great reviews on Amazon.com...........The joint aches seem to be improving everywhere except my lower back.


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## Andros (Aug 26, 2009)

Reporter said:


> RADIOLOGY REPORT FINDINGS:
> Ultrasound evaluation of the bilateral neck. A discrete dominant nodule was not seen within the right lobe of the thyroid gland. Review of the prior ultrasound from VRI showed a questionable nodule versus underlying heterogeneity. This likely just represents heterogeneous parenchyma in this region without a discrete nodule. Within the left lobe of the thyroid gland, there is a hypoechoic solid nodule seen superficially within the mid portion which was targeted for fine needle aspiration. The tips of the needles are identified within the nodule.
> 
> IMPRESSION: Successful ultrasound-guided FNA of a solid hypoechoic nodule within the left lobe of the thyroid gland.
> ...


What wonderful news and I also am glad that is over and done with. Good choice on Carlson's. I love their Omega III.


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## Charlesbt4 (Oct 10, 2011)

You could have hypopituitarism, or secondary hypothyroidism, in the face of primary hypothyroidism. That would explain the low TSH, Free T4, and Free T3. If your hypopituitarism was also impacting other hormone levels, such as your coritisol level (hypoadrenalism), that would explain the sudden, severe symptoms associated with treatment of your hypothyroidism. If this were the case, you would first need to treat the low cortisol level, then begin treating the low thyroid levels. Although, depending on the severity of the problem, both can be done simultaneously.

Whoops. It would appear that I should have read past page 3 on this thread.


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