Hot nodule...so in need of advice :(

[AndieR]

Listening for Zebras?...Hot nodule diagnosis
Hello everyone...my first post and I'm using a phrase my husband says when I start to get more worried than usual. So, I am here because I have recently been diagnosed with a hot nodule after US and uptake testing. But I am very very confused and hoped that more expert members could offer their suggestions and/or opinions. I promise to make the story as short as possible with as much specific info too...

After suffering the last couple of years with insomnia and what was considered perimenopausal symptoms I went this past July to a Rheumatologist who diagnosed Fibromyalgia and ran a slew of blood tests. His office called about low Vitamin D ( 23.5) but did not mention my TSH test which in July showed 0.125. A family dr. saw me in August and said the TSH was low and wanted to run a couple of additional tests. I went home that evening and did a little research which piqued the interest of my husband. He looked at my throat and found a rather large swollen area when I looked up ( who knew?). Called the dr. a few days later and she said no big deal since her new labs showed no issues. I was worried so I went to the other dr. in the practice who ordered an US-that result showed a complex cystic/solid mass 3.4 x 2.2 x 2.5 cm on lower right lobe showing some vascularity and no calcifications. Left side showed 2 small nodules with complex qualities. Had to call several dr.'s from that as I live a bit far out and we do not have many endocrionlogists to choose from. Finally found one who met with me and ordered the iodine uptake test and new labs this last end of August. I by the way seem to be feeling worse each day...in particular muscle aches, fatigue and weird pain in wrists and thumbs? Did the uptake and the report from that shows a right side large hot nodule with some photopenic areas? Left lobe shows a relatively homogenous appearance. I'm confused as the reprot goes on to say that although uptake values are in the normal range this could be a hyperfunctioning nodule and to correlate clinically....(sigh). So I went back to the Endo last week after trying to do logical, sane research as well so I could ask legit questions. He seemed very thrown by me asking if my muscle and fatigue symptoms would be caused by the nodule overproducing hormone...said he had never even heard of that as a symptom. Uh oh I am thinking since I thought I had read those were legit symptoms. He said my labs looked good overall: TSH- 0.30, Free T4 0.68 and Free T3 2.05, TPO and AB test look normal. I thought those TSH and Free T4 numbers looked low but he felt that it was within a normal range. Now he says to do a FNA to biopsy for cancer which is fine with me. My bigger fear and this is driving me on to another Endo for another opinion is the fact he thought my symptoms ( aches,pains) did not match his experience with a hot nodule and that the labs seemed okay.

I am trying very hard not to be overeactive but I have seen what sticking your head in the sand has done for and to other family members and I am a big believer in educating myself but trying not to challenge the doc...just ask questions but evertime I do it seems as if I am the devil incarnate. I don't even care why they get upset anymore...I just want to make sure I'm not going crazy here. I am tired of feeling terrible and yet I can't seem to get anyone to listen. I also read that hyper symptoms and fibromyalgia do not coexist so now I don't even know what to think on that one anymore...I promise I'm not listening for zebras...I just want to know what I should be doing. Any advice or sharing of info would be much appreciated!
Andie

[stella5349]

Regarding the low Vit D too. - Addressing this - now found could definately help you feel better soon.

[stella5349]

I just got to thinking more about having the FNA and so you are aware, if an FNA is done and this nodule is already secreting and releasing thyroid hormone, having an FNA can puncture a hole in the nodule and that will release more hormone if it is opened.

I think looking at the labs you are low in hormone so basing that is something too.

The TSH in this case would not be something to look at - but the other tests could indicate why you are having symptoms.

[MANmom]

I had a lot of aches and pains before my thyroid was removed...sore elbows and knees, tired all the time, with the usual thyroid symptoms...I had several nodules, and several cancerous tumors, when my thyroid came out the pain in my elbows and knees disappeared.  Get the biopsy, it may or may not help you make a decision, but eventually the nodule will have to come out, it is pretty big.

[AndieR]

Thanks so much for taking the time to reply...can't tell you how much it means when I feel as if no one wants to take a few minutes to really listen. Just to add all the testing for RA/sed rates always come in as "normal". Vitamin D was low in July so they have me now on 50,000 IU per week. Fibro was diagnosed in July as well based on the trigger point test results.

Here are the thyroid lab specifics:
July 2010 TSH: 0.125 Ref range: 0.450-4.500 ( done by Rheumatologist)

Aug 27, 2010: ( Done by Endo)

TSH: 0.30 Ref range: 0.50-6.0 mIU/ml
Free T4- 0.68 Ref range: 0.75-1.54 ng?dl
Free T3-2.05 Ref range: 2.0-4.9 pg/ml
TPO- < 6 Ref range 0-34 IU/ml
Antithyroglobulin Ab <20 Ref range 0-40 IU/ml

Not sure at all on those last two if they mean anything? Bottom line for me is to find a dr. who will at least consider what "may" be happening and/or it's causes. Yes there is a nodule and I'm not opposed to surgery. I'm just hoping that someone can tell me if that nodule is causing the symptoms and if there is something else that may be causing the nodule itself. This last endo just seemed flustered that I even came in with questions which was a red flag right away.

Again, thanks to everyone for their advice and input!

Andie

[stella5349]

Andy

Can you provide the reference ranges from the lab report please on the TSH and the frees?

thanks

as for the FNA - on your type of nodule - sure you can go ahead and get that - but with the type it looks like there may be nothing to worry about here.

Producing hormones however can be tough to deal with. They have a higher chance on doing that with these types and your symptoms are not uncommon. Rare on the achiness but this can be part of it too.

On the Fibro and RA -  please post those references again to see this. Also please post the actual TPOab and TgAb tests too.