# So confused and frustrated. Would appreciate ANY insight or advice.



## Txngrl (Jul 14, 2011)

I'm starting this post to put all my information in one place and see if it makes any sense to anyone.

I'll start at the beginning: I began to see a new endo back in March. I have diabetes 2 and this was the predominant reason I went to see him. He ran a variety of tests and these were the first results regarding thyroid:

T4,Free(Direct) 1.02 0.82-1.77 ng/dL 
TSH 6.100 0.450-4.500 
Triiodothyronine (T3) 177 71-180

In the meantime, before I could get back to see the endo to discuss these results, I paid a visit to my GP for another issue. We discussed the T4 result and I also pointed out a slight bulge on the right side of my neck that had been there for quite a while, very slowly growing. It's not big at all and no one would ever notice it just looking at me. My previous doctors were never willing to discuss thyroid issues with me because my T4 always came back in normal range :sigh: Anyway. The GP wasn't too alarmed about the T4 but said we could try some Levothyroxine 50 and see if I didn't feel better and then he said he wanted an ultrasound of my thyroid because of the bulge.

Before I could even schedule the ultrasound, my endo called me that day to discuss my labs and when I told him I'd seen the GP and he wanted an ultrasound, he said he would do one in his office when he saw me in two weeks. He didn't really say anything then about him putting me on levo. He also told me to come in the next day for a thyroid panel and we'd discuss that at my visit in two weeks also.

The results of the thyroid panel were:

Thyroglobulin, Qn. 1913.0 0.5-55.0 
Antithyroglobulin Ab <20 0-40 
T4,Free(Direct) 1.06 0.82-1.77 ng/dL 
TSH 3.920 0.450-4.500 uIU/mL 
Thyroid Stim Immunoglobulin 40 0-139 % 
Triiodothyronine (T3) 122 71-180 ng/dL 
Thyroid Peroxidase (TPO) Ab 12 0-34 IU/mL

Around the time I started taking the levo. my thyroid seemed to go nuts. I was experiencing lots of pain and feelings of swelling. I couldn't wait to see him for my next appt. because the pain was freaking me out, the thyroglobulin level was freaking me out...omg. I wanted this thing looked at asap and was wishing I'd just gone for the original sonogram the doctor ordered.

Well, the day of the appointment, I was feeling a bit better as far as pain was concerned but it still had twinges, felt large, etc. He did the ultrasound and said that my right side was larger, multinodular but no particular nodule was "large" or "larger" than the others. It was kinda annoying because I had no report to reference or anything. Just kinda felt like a flying by the seat of our pants ultrasound. But he was so reassuring and I trusted his expertise. He then said if we were going to take levo. it needed to be something I committed to and he upped the dosage to 100. Eventually my pain subsided and my slight bulge almost seemed smaller to me and I just continued on with life.

Well, flash forward to last week. I was supposed to go in for a follow up but with it being Summer with kids home it was hard for me to pinpoint a time I knew I could commit to. Well, suddenly, I started having those pains again. On both sides of my neck. I called my endo's office knowing full well it was going to probably be a while before I could be seen. Well, I lucked out on a cancellation and got in the next morning! Of course there was no time for there to be labs in front of us but I told him I was pains and tight swelling feelings again. I asked if we could just take another look since it had been a few months.

He was willing and when he looked he said it looked pretty much the same and again said the right side was multinodular and large but that he'd go ahead and do a FNA. He showed me his nifty models of a normal thyroid, a multinodular (like mine) and a thyroid with a cancer nodule. It made sense to see the pics and he explained that since mine looked like the multinodular, he would be floored if anything came back and he was doing it for my sake to calm my worries. He then repeated some of the thyroid tests. Here are the latest results:

T4,Free(Direct) 1.60 0.82-1.77 ng/dL 
TSH 0.522 0.450-4.500 uIU/mL

Why in the world was there no T3 of any kind included in this is beyond me.

My biggest problem is that my thyroid feels crazy again. Lots of pain and swelly feelings again. Why is this coming and going? Does anyone see a trend or anything that sticks out? I should get the results of the FNA any day but I'm going crazy the way I feel.

On a side note: I have problems with anxiety at times, but my anxiety seems off the chart lately. I've never felt like this before where it is unyielding and persistant. Usually I have a moment, then I either have a good cry or fret for a few minutes then calm down and find something else to do.

In a previous post, I told about how I took a decongestant the other day because my ears have been driving me crazy stopped up. That night my already off the charts anxiety was crazy, crazy. I learned my lesson.

However, even though I'm sure the decongestant is out of my system, I still feel nutty and like I'm having a hard time breathing. My neck still has the painful, burning, hot, swelling feeling. At times I feel like my thyroid is structurally bothering me (choking). This does not help the anxiety as you can imagine. What is really bothering me is that I'm feeling discomfort on the left side more than the right side and this is not the side they did any FNA on. He poked me once on the right side.

Why do I have the worst luck? The swelling, pain on the left side didn't take off until after the FNA??? Of course I'm eager to see the results of the right side, but if everything comes out ok, who is to say something is not going on with the right side now??

I'm so confused as to what is going on with my thyroid. What is happening? Why did the pain go away for a while and come back? Could it be painful thyroiditis??? Could I be over-medicated? Are all signs pointing to cancer? What about my labs? Why only the slightly high TSH in the beginning? Why the high thyroglobulin? (my doctor just kind of dismissed that with a wave of his hand).

I like my endo in some ways, and in other ways I feel like we only get half the picture with him. No free T3 tests and not even a normal T3 this last time???? Frustrated is an understatement.

Thank you to any kind soul who took the time to read this for me. Any ideas would be greatly appreciated.


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## Txngrl (Jul 14, 2011)

***I have to go back and change that after the TSH initially came back high, I saw my GP on a Friday afternoon and he started me on the levo over the weekend. My endo called Monday before I could schedule the ultrasound. By the time I had the second panel done, I'd been on the levo a few days.


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## Suburban (Jun 12, 2011)

Just wanted to say hi.

It would be interesting to find out what the FNA has to say about the nodules - I don't think ultrasound can tell whether they are benign or not. I know how you feel re the stress and anxiety - having all of this going on is bound to be stressful. I don't take meds at the moment so can't help there - but please keep us updated with any info. Hopefully someone with more knowledge will be along soon.

Hang in there :hugs:


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## Txngrl (Jul 14, 2011)

Thanks for your reply and support. I'm a nervous wreck.

I checked the doctor's interface Thimbu MDBug and the results were still not showing up. So my anxiety got the better of me and I called the office and spoke to the nurse practitioner. I apologized profusely for not being patient but was feeling anxious and wondered if they had the results of my biopsy. At first she said she didn't see them and then she told me to hold and she'd check the lab. I was on hold for quite sometime. She came back and said they were in but she needed to have the doctor look it over and then she could talk to me about it. She explained the my doctor was not in today and she would have to ask another doctor to review them and she'd call me back before they closed at 5 PM.

It's now 3 PM.

She heard me kind of tune up and she was like , calm down....relax....I'll call you back."

I don't understand how they have an interface where people just read their own reports before the doctor even sees them (this is true. .the doctor told me I'd see them before he did most likely) then why can't a nurse practitioner go ahead and tell me. Plus, why couldn't she have said, "everything is fine but I'll have the doctor look at it and we'll call you back to explain exactly what the report said."

My mind is racing....I can't help feeling this is bad...... I'm so scared now.


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## Suburban (Jun 12, 2011)

I think the docs just don't realise how stressful it is waiting for results or to get things done.

It might that the nurse wasn't sure what the results meant or perhaps that the doc needs to go over them first? It could be something like it needs to be done again, not enough cells etc - not necessarily bad. If it is something that needs treating then at least you are on the way to getting it done now.

I am experiencing the same sort of thing with not hearing back from the endo re getting an FNA done. I know its hard but you will probably be able to get the results tomorrow and then know for sure. Keep us updated and fingers crossed its all ok hugs3


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## Txngrl (Jul 14, 2011)

Well, I kinda pressed the issue with them before their office closed. Apparently my doctor will not be back in the office until Wednesday. The only thing the nurse would say is that the results were inconclusive and the doctor that was in didn't feel like it was her call to discuss the report and advise me on it.

I was freaking. Then I pointed out that they couldn't keep a lab report from me and they said "you're right."

They printed it out for me and I picked it up. This is what it said:

Right tyroid, fine needle aspiration:
- Adequate for evaluation
- Follicular lesion of undetermined significance

COMMENT: The aspirate is cellular with focal mild cellular atypia and overlapping patterns.

Clinical correlation and a repeat aspirate in appropriate interval (e.g. Three months) are suggested. 
This case has been reviewed for interdepartmental consultation with Dr. P Holder.

What the ????? Does anyone know what the heck this means? Sure would have been nice to have a doctor who didn't have a 5 day weekend so he could discuss this with me...or he could have at least left another doctor able to discuss. This is beyond frustrating.


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