# still no clear cut answer. frustrated



## Bethany79 (Jul 24, 2012)

I am firing my endocrinologist. The nurse called me with my results said everything was normal and hung up on me. So I called back and had them fax my pathology report and blood labs to me. Tsh 3.19
t4 free (direct) 1.04
Tpo 12
antithyroglobulin ab <20
Pathology: paucicellular sample, features suggestive of nodular goiter
comment: the fna shows approximately 8 or less follicular clusters with accompanying scant colloid. Due to the limited number of cells the sample is suggestive, not confirmatory of a benign nodular goiter. The follicular cells show no nuclear atypical and are seen in predominantly sheets and clusters. No accompanying cell block is seen. The cytyc thin prep shows rare follicular cells and limited colloid. Clinical correlation reguarding the size of the lesion is recommended. If any changes in size occurs, repear fna may be warrented.

So now what do I do? Obviously this isn't normal. And I am having more difficulty swallowing.


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## lainey (Aug 26, 2010)

So pathology is benign, and labs are pretty much normal.

What were you thinking they should do?

Should the swallowing issues be addressed by an ENT perhaps?


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## Bethany79 (Jul 24, 2012)

lainey said:


> So pathology is benign, and labs are pretty much normal.
> 
> What were you thinking they should do?
> 
> Should the swallowing issues be addressed by an ENT perhaps?


So if labs are normal and pathology is inconclusive you do nothing? Interesting.


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## lainey (Aug 26, 2010)

To do something, there needs to be a measurable problem to treat. What exactly are you expecting to treat?


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## Bethany79 (Jul 24, 2012)

lainey said:


> To do something, there needs to be a measurable problem to treat. What exactly are you expecting to treat?


The nodule compressing my esophagus.


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## sleepylady (Mar 18, 2012)

Bethany,

I wish these doctors all had something stuck in their throats that didn't belong there!

I have an FNA scheduled for Wed.

What are the ranges for your lab? Mine are all "normal" too and I haven't felt right in almost 2 years. Still trying to get diagnosed with SOMETHING.


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## Octavia (Aug 1, 2011)

If you are having difficulty swallowing, I would recommend an appointment with an ENT.


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## sleepylady (Mar 18, 2012)

Octavia,

You know I think the dismissive attitude is what is really bothering her. If the doctor would say, "ok, well we ruled that out but I will refer you to an ENT for the swallowing issue." But I know how she feels. My doctor told me my nodule was the size of a pinhead, because apparently the idiot didn't know the difference between .9 mm and 9mm. I know that people have larger nodules, but that isn't the size of a pinhead, it is the size of a bullet! LOL!

Since her FT4 looks a little low, would a little T4 help to shrink the nodule, maybe? Just wondering as I am a newbie myself.


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## Bethany79 (Jul 24, 2012)

sleepylady said:


> Octavia,
> 
> You know I think the dismissive attitude is what is really bothering her. If the doctor would say, "ok, well we ruled that out but I will refer you to an ENT for the swallowing issue." But I know how she feels. My doctor told me my nodule was the size of a pinhead, because apparently the idiot didn't know the difference between .9 mm and 9mm. I know that people have larger nodules, but that isn't the size of a pinhead, it is the size of a bullet! LOL!
> 
> Since her FT4 looks a little low, would a little T4 help to shrink the nodule, maybe? Just wondering as I am a newbie myself.


Exactly! Thank you God for someone with empathy hugs1. Actually I tried to get an appointment with an ent and they wouldn't see me unless I had a positive for cancer fna. It is really upsetting when you know something is very wrong but others look at your labs and say its nothing.


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## Bethany79 (Jul 24, 2012)

The first time I had bloodwork for all this only the tsh was done. It was. .91


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## lainey (Aug 26, 2010)

Thyroxine replacement won't shrink a nodule.

Small nodules (less than a centimeter) often come an go on their own. Multiple small thyroid nodules is a very common occurrence, but generally do not warrant treatment on their own.

An ultrasound should have revealed if the nodule was pressing on any structures such as the esophagus, and generally an ENT would investigate further. Removable nodules and generally quite a bit larger--there are no hard and fast rules, but "large" is often 1.5 cm or greater.

Did they find a dominant nodule pressing on your esophagus to cause the swallowing problem? There are nerve/muscles issue that can cause this as well. Has any other cause been investigated?


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## Bethany79 (Jul 24, 2012)

Yes dominant vascular solid nodule. Solitary. Moderately enlarged, diffuse, heterogeneous thyroid. Thickened isthmus. Correct me please if I am wrong but these things are not normal. It has been confirmed that it is the nodule causing the dysphagia. The nodule is >1.5cm.


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## midgetmaid (Jul 22, 2010)

Have you tried to get an appointment with another ENT?

Renee


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## Bethany79 (Jul 24, 2012)

midgetmaid said:


> Have you tried to get an appointment with another ENT?
> 
> Renee


There is only one in my area that is in my insurance network.


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## Andros (Aug 26, 2009)

Bethany79 said:


> I am firing my endocrinologist. The nurse called me with my results said everything was normal and hung up on me. So I called back and had them fax my pathology report and blood labs to me. Tsh 3.19
> t4 free (direct) 1.04
> Tpo 12
> antithyroglobulin ab <20
> ...


Take that report and get an appt. with an ENT. That is my humble and most experienced opinion.

"Suggestive" is not a word that I like to hear nor should you.


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## Octavia (Aug 1, 2011)

Bethany79 said:


> Exactly! Thank you God for someone with empathy hugs1. Actually I tried to get an appointment with an ent and they wouldn't see me unless I had a positive for cancer fna. It is really upsetting when you know something is very wrong but others look at your labs and say its nothing.


Well, that stinks! Were you abundantly clear with them about having trouble swallowing? To me, that's a very relevant/important symptom in and of itself, regardless of cancer.

I think you mentioned in another post that you only have one ENT in your network. What if you go to a nearby city...does that give you more options?


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## Bethany79 (Jul 24, 2012)

I just got back fom a visit with my GP. She told me the sample was insufficient and is calling the ENT she originally referred me to, to discuss my case.


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## Octavia (Aug 1, 2011)

Okay. Keep us posted. Maybe she'll have better luck on your behalf.


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## Bethany79 (Jul 24, 2012)

Octavia said:


> Okay. Keep us posted. Maybe she'll have better luck on your behalf.


Making an appointment with the ENT. They are going to possibly do a repeat FNA and laryngoscopy. My GP flat out said that my Endocrnologist is a quack. lol! I had originally tried to get an appointment with this ENT but there was a misunderstanding with the office staff. Supposedly this doctor is really good and knows the thyroid very well. I just want to move forward with all of this. Thank you all for your continued support and advice.


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## Bethany79 (Jul 24, 2012)

Andros said:


> Take that report and get an appt. with an ENT. That is my humble and most experienced opinion.
> 
> "Suggestive" is not a word that I like to hear nor should you.


My GP said the same thing. She said paucicellular means that the cells were to scant to make a diagnosis. Hopefully I will get in to the ENT by the end of this week. They are out to lunch right now, so I will be calling at 1.


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## Bethany79 (Jul 24, 2012)

I got an appointment for the ENT, September 13th unless they get a cancellation. I really hate this waiting game.


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## Octavia (Aug 1, 2011)

Okay, well, at least you have an appointment now!


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## Bethany79 (Jul 24, 2012)

Octavia said:


> Okay, well, at least you have an appointment now!


I'm ready to flop on the floor and have a meltdown.:sad0049:


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## Andros (Aug 26, 2009)

Bethany79 said:


> I'm ready to flop on the floor and have a meltdown.:sad0049:


{{{{{Bethany79}}}}} You poor dear! Focus on that appt.. It's not that far off!

The good news is that you "got it."

Bless your heart! We are here for you. Vent all you need to!!


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## Bethany79 (Jul 24, 2012)

Andros said:


> {{{{{Bethany79}}}}} You poor dear! Focus on that appt.. It's not that far off!
> 
> The good news is that you "got it."
> 
> Bless your heart! We are here for you. Vent all you need to!!


hugs1 bless your kind heart! I can't thank you and everyone else enough. This has been a very much needed outlet for me through all of this. It has been difficult holding it together without letting my kids on that something isn't right. Big hugs for all!


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## sleepylady (Mar 18, 2012)

Bethany,

I go for my FNA tomorrow.

Here's to the 13th.


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## Bethany79 (Jul 24, 2012)

sleepylady said:


> Bethany,
> 
> I go for my FNA tomorrow.
> 
> Here's to the 13th.


Good luck to you tomorrow! Hope all goes well.hugs1 I will say a little prayer.


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## sleepylady (Mar 18, 2012)

Thanks.

It went way better than I expected. Everyone on here was right.

I have a bit of discomfort, but it isn't too bad.

Now I wait.......


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## Bethany79 (Jul 24, 2012)

sleepylady said:


> Thanks.
> 
> It went way better than I expected. Everyone on here was right.
> 
> ...


The wait is the worst part of it. I was a little more uncomfortable the day after the fna. But it wasn't anything a couple of tylenol wouldn't cure. Please keep us posted.


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## Andros (Aug 26, 2009)

sleepylady said:


> Thanks.
> 
> It went way better than I expected. Everyone on here was right.
> 
> ...


Put ice pack on your neck, it helps a lot.

We begin the waiting game w/you!!!


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## sleepylady (Mar 18, 2012)

Thanks Andros.

Actually the front of my neck really doesn't hurt. I don't know if it is related, but my shoulder hurts where it meets my neck.

My neck only hurts when I turn my head. Sometimes I feel a bit when I swallow, yawn, etc. I was really pleasantly surprised.

They said either early next week or in a week.

The best case scenario for me in my opinion would be to have benign cells consistent with Hashi's. No cancer and a diagnosis!


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## Bethany79 (Jul 24, 2012)

sleepylady said:


> Thanks Andros.
> 
> Actually the front of my neck really doesn't hurt. I don't know if it is related, but my shoulder hurts where it meets my neck.
> 
> ...


Yep mine bothered me the most when I yawned as well. Thinking positive thoughts for you.


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## worriedsick (Aug 17, 2012)

Bethany, I am a little confused here, are you diagnosed with a thyroid disease? Are you looking to be diagnosed hypo or hyper or are you looking for surgery in order to correct something that you feel is affecting your otherwise healthy thyroid? Are you having any other symptoms either than difficulty swallowing?


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## Bethany79 (Jul 24, 2012)

worriedsick said:


> Bethany, I am a little confused here, are you diagnosed with a thyroid disease? Are you looking to be diagnosed hypo or hyper or are you looking for surgery in order to correct something that you feel is affecting your otherwise healthy thyroid? Are you having any other symptoms either than difficulty swallowing?


I have had no formal diagnosis to date. I have been feeling unwell since last year. It started with fatigue, an increase in severity and frequency of migrains, joint pain, heart palpitation and chest pain ect. Following a bite from a deer tick. Immediately started doxycycline western blot positive 1 band(3 weeks post bite) which is not a positive result according to cdc. Symptoms never really went away. Seemed to come and go. March of this year began getting severely dibilitaing headaches vision changes, numbness in hands and feet. Reffered to a neurologists. I am due back in November for followup MRI. July this year began having diffuculty swallowing, bouts of gallactorhea, irregularly menses, on top of my other symptoms. Visited my doctor.repeat western blot revealed 2 possitive bands suggestive of lyme according to cdc. Sent for us visibly enlarged thyroid gland and dysphagia. Ultrasound revealed moderately diffuse thyroid. Solid dominant vascular nodule right midpole. Thickened isthmus. Reccomended fna. Fna inconclusive.


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## Bethany79 (Jul 24, 2012)

worriedsick said:


> Bethany, I am a little confused here, are you diagnosed with a thyroid disease? Are you looking to be diagnosed hypo or hyper or are you looking for surgery in order to correct something that you feel is affecting your otherwise healthy thyroid? Are you having any other symptoms either than difficulty swallowing?


Healthy thyroid? I may be wrong but I do not think the thyroid swells up for no reason.


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