# New and nervous (long first post)



## anubis1478 (Jul 26, 2011)

Sorry this post is so long... I just don't know where to start, what's important and what's not. Any information, guidance etc anyone can give me would be most appreciated.

I noticed a lump in my neck after my son was born (August '09), and didn't think much of it since pregnancy hormones can do weird things to your body, until it didn't go away after a few months. I saw my PCP in May of '10 and she drew labs and sent me for an ultrasound of my thyroid. 
The labs came back: TSH 2.299, Free T4 0.90. 
The u/s showed two complex right thyroid nodules, the larger measuring 2.8x1.5x1.7cm. The left lobe contaning a tiny hypoechoic region measuring 0.3x0.1x0.2cm. The isthmus had a left sided nodule measuring 0.4x0.2cm. 
She then sent me to have a biopsy, which was done also in May '10 which was read: "Clinical History: 2.8cm solild/cystic nodule, right thyroid. Smears are of low overall cellularity. They show scattered groups of benign follicular epithelial cells and numerous histiocytes dispersed in a background of cyst fluid and colloid. No features of malignancy are identified. Consistent with a benign thyroid nodule with cystic change.". 
I then saw an endocrinologist who basically said let's follow up with an ultrasound in 6 months. 
Then the last few months I started noticing that I could feel the nodule when I swallow, and can even notice that it's there when I'm not doing anything (just feels like I've got a lump in my throat), and sometimes feels like it's hard to swallow. So, I found a new MD (I moved) and he rechecked my labs and ordered another u/s (all in July '11).
 Labs came back: TSH 3.35, Free T4 1.0, TPO Antibody 35.1, Anti thyroglobulin 424.1.
The u/s report describes a 2.8x1.9x1.6cm mixed ecogenicity mass in the right thyroid with cystic and solid components which probably represents a necrotic nodule. Also seen another cystic appearing 9x7x4mm nodule in the lower right lobe. A 2mm cystic nodule is seen in the left lobe. 
The other issue - I think I have some hypothyroid symptoms (and yes, I know my levels don't show hypothyroid). 
-	Family history of thyroid issues - both maternal grandparents had thyroid problems (one had thyroid cancer)
-	Unable to lose weight despite diet (same diet as 2 years ago when I was able to lose 35 lbs - I gained much of that weight back)
-	Constipation
-	Always tired (I realize I also have a 2 year old at home)
-	Aching joints and stiffness
-	Low mood/depression (not interested in doing a lot of things)
-	No libido
-	Memory is not as sharp as it was a few years ago (forgetful, having trouble finding words at times)
-	Dry eyes
I told my new MD that I thought I had hypothyroid symptoms (not this list, just in general) and he said he didn't want to treat because my labs were normal and he didn't want to make my hyperthyroid. He has referred me to an endocrinologist, who I am seeing tomorrow.

So now what? Am I crazy? Am I seeing things that are not there? The labs are "normal" except for the antithyroglobulin which is super high... but what does that mean? I feel like I'm going insane. Please help!


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## paisleyheart08 (Jul 23, 2011)

You're not crazy! Wish I could help you, but someone with more wisdom and experience will write you. I'm seeing an endo on Friday--a miracle in and of itself. I was supposed to have to wait a month+. My labs are "normal" and I feel pretty awful! I have almost every one of the symptoms you described and I have complex and solid nodules on my thyroid with a family history of thyroid cancer, too. I wish you all the best!


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## webster2 (May 19, 2011)

anubis1478 said:


> Sorry this post is so long... I just don't know where to start, what's important and what's not. Any information, guidance etc anyone can give me would be most appreciated.
> 
> I noticed a lump in my neck after my son was born (August '09), and didn't think much of it since pregnancy hormones can do weird things to your body, until it didn't go away after a few months. I saw my PCP in May of '10 and she drew labs and sent me for an ultrasound of my thyroid.
> The labs came back: TSH 2.299, Free T4 0.90.
> ...


Welcome! So sorry for what brings you here. I am a newbie too, and haven't figured the whole thyroid thing out yet, maybe brain fog? However, you will find answers to your questions. No, you are not crazy. Someone will be along soon that can help prepare you for your appointment. It is hard to be an advocate for yourself when you are not feeling well, and it sure sounds like you are not feeling well. Hang in there, help will be along soon. :hugs:


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## webster2 (May 19, 2011)

Oh, if you have the ranges from your lab report post them too.


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## Andros (Aug 26, 2009)

anubis1478 said:


> Sorry this post is so long... I just don't know where to start, what's important and what's not. Any information, guidance etc anyone can give me would be most appreciated.
> 
> I noticed a lump in my neck after my son was born (August '09), and didn't think much of it since pregnancy hormones can do weird things to your body, until it didn't go away after a few months. I saw my PCP in May of '10 and she drew labs and sent me for an ultrasound of my thyroid.
> The labs came back: TSH 2.299, Free T4 0.90.
> ...


Welcome. First let us clarify. You are not crazy.

High Thyroglobulin is such a huge hint, I am surprised no doctor has commented.

Sonograms are good, sometimes but they are dependent very much on the skill of the operator and sometimes they just don't pick everything up. RAIU (radioactive uptake scan) would be a much better choice.

That said, let's discuss the thyroglobulin by way of some of my most favorite and credible links.

cancer TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract

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

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

Another Thyroglobulin and cancer
http://www.mdlinx.com/endocrinology...963/?news_id=811&newsdt=092010&subspec_id=419

And a favor please; in the future, we do need the ranges with your lab results because different labs use different ranges.

Antibodies can make your lab results come in normal range for there are stimultating, binding and blocking antibodies and immunoglobulins which are making an attempt to set the body to rights.

You can read about them here.

TSI (thyroid stimulating immunoglobulin),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/

Antithyroid microsomal antibody (negative is normal)
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

Please let us know what the endo has to say. Your thyroid does appear to be worrisome.

Welcome to the board and I hope you find the info you need here.










Thyroid cancer symptoms
http://www.cityofhope.org/patient_care/treatments/thyroid-cancer/Pages/symptoms.aspx


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## anubis1478 (Jul 26, 2011)

webster2 said:


> Oh, if you have the ranges from your lab report post them too.


Sure thing:

The May '10 results
TSH: 2.299 (0.350-5.500)
Free T4: 0.90 (0.71-1.81)

The July '11 results (different hospital from above)
TSH: 3.350 (0.350-5.000)
Free T4: 1.0 (0.8-1.5)
Anti-thyroglobulin: 424.1 (<60)
Thyroid Peroxidase AB (TPO): 35.1 (<60)

Thanks for the kind words of support so far. It's nice to connect!


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## Andros (Aug 26, 2009)

anubis1478 said:


> Sure thing:
> 
> The May '10 results
> TSH: 2.299 (0.350-5.500)
> ...


Thank you so much for re-posting w/ the ranges. Curiously, your FT4 is below the mid-range of the range given by your lab.

AACE recommends that the range for TSH be 0.3 to 3.0 but most of us feel best @ 1.0 or less.

For that reason, I am going to say that your labs are showing hypo and I know you "feel" it if nothing else.


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## anubis1478 (Jul 26, 2011)

paisleyheart08 said:


> You're not crazy! Wish I could help you, but someone with more wisdom and experience will write you. I'm seeing an endo on Friday--a miracle in and of itself. I was supposed to have to wait a month+. My labs are "normal" and I feel pretty awful! I have almost every one of the symptoms you described and I have complex and solid nodules on my thyroid with a family history of thyroid cancer, too. I wish you all the best!


@paisleyheart08
Please let me know how your appointment goes, and I will do the same. It helps so much to know that there are others out there who are going through this!


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## paisleyheart08 (Jul 23, 2011)

Will do! It makes a world of difference to know other people out there understand you.


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## Suburban (Jun 12, 2011)

Just wanted to say hi and good luck with the endo - just tell him/her everything you've told us, especially about the history of thyroid cancer in your family. :hugs:


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## anubis1478 (Jul 26, 2011)

Well, the endo appointment was disappointing to say the least. He sees no reason to do anything at this point, wouldn't perform any tests and wants me to follow up with him (labs and visit only) in 5-6 months. If I wasn't depressed before, I am now.


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## paisleyheart08 (Jul 23, 2011)

So sorry! I've been where you are and it stinks. My endo appt is Friday and I hope it goes better than appts in the past have.


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## anubis1478 (Jul 26, 2011)

paisleyheart08 said:


> So sorry! I've been where you are and it stinks. My endo appt is Friday and I hope it goes better than appts in the past have.


Good luck to you!


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## Suburban (Jun 12, 2011)

anubis1478 - is it possible to get a second opinion at all? Things are obviously not right with all the symptoms you are feeling and one of those nodules is pretty big. Its rubbish when you feel you've been fobbed off - I've had that myself by endo's and doc's. I'm currently in touch with a patient liaison service who are trying to make sure I get the treatment I need - is there are service like that you could contact? 
:hugs:


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## Andros (Aug 26, 2009)

anubis1478 said:


> Well, the endo appointment was disappointing to say the least. He sees no reason to do anything at this point, wouldn't perform any tests and wants me to follow up with him (labs and visit only) in 5-6 months. If I wasn't depressed before, I am now.


Oh, please don't tolerate that!!! You have thyroid issues, some of which could be quite serious. Please get a second opinion.

Don't let yourself get battered down by an uncaring doctor. You have to be strong to get in there and fight for yourself.


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## anubis1478 (Jul 26, 2011)

I fully intend to seek a second opinion, however my problem is that I have HMO insurance and my IPA has almost no endos listed. I'm not thrilled to have to pay out of pocket for a consult, especially if that leads to additional testing and treatment. I'm going to call my PCP back today to see if the referral can be sent to another endo (if one exists) covered by my insurance. UGH.


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## Andros (Aug 26, 2009)

anubis1478 said:


> I fully intend to seek a second opinion, however my problem is that I have HMO insurance and my IPA has almost no endos listed. I'm not thrilled to have to pay out of pocket for a consult, especially if that leads to additional testing and treatment. I'm going to call my PCP back today to see if the referral can be sent to another endo (if one exists) covered by my insurance. UGH.


HMO docs get residuals for keeping expenses down. Even if it means you die. It's all about the money. Bottom line.

You are really going to have to do some squawking. I hate when you don't feel well to tell you to enter the battle but that is what it takes.


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## anubis1478 (Jul 26, 2011)

Well I was able to get an appointment with another endo, but not until Sept 1st. Will just have to wait to see what happens then.


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## Bungee (Jul 2, 2011)

Good luck with the second opinion. I am a newbie also and am in the process of being diagnosed. It seems like a long process when you do not feel well. I do not know much, but from what you have posted I would hope that you would have had a better answer by now as to what is going on with your thyroid. 
I understand the frustration of waiting to see a Dr. or get a test done. 
I will check back to see how you are doing.


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## Andros (Aug 26, 2009)

anubis1478 said:


> Well I was able to get an appointment with another endo, but not until Sept 1st. Will just have to wait to see what happens then.


See if they have a cancellation list if you would like to do so!


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