Scared -Not sure it even is thyroid

[WildMtn]

Up until 10 days ago my concerns have been: chronic diarrhea that came after a bout of Cdiff, but might but might be colitis related. Migraines, since puberty, but changed recently in type, and one constant headache for 8+ weeks now, that the think may be due to intracranial hypertension due to a CT scan that showed a "partially empty sella" ( where the pituitary sits). A DVT 2+ years due to Factor V.

10 days ago I noticed a lump on the right side of my neck. I thought it was a swollen lymph node, which made sense given my kids and husband had recently all had colds. But I never got sick. And the lump stayed, and kept getting bigger. My appetite shrunk, in part because it started to get harder to swallow. Yesterday I had finally had enough when I had trouble taking my morning meds and called my PCP. She felt around, was concerned that all/most of the lymph nodes from chin down the neck to thyroid were enlarged. I mentioned that I had been worried about the thyroid being involved as well. She hoped it could just be strep, but that came back neg. she ran a CBC, and a TSH. CBC all looks normal.

TSH Ultrasensitive 0.04
Range. : 0.34 - 5.60 mIU/L

What on earth can that mean for someone who has never been on thyroid meds? Every thing on the 'net for a level that low mentions being on meds?

Needless to say, I got these results via a patient portal early this am, and now I guess I wait until my PCP office opens and they call me, or I call them?

[goolarra]

Nodules are very, very common.  They're common with both Graves' and Hashi's.  Same with an enlarged gland (goiter).  Unless nodules are large or suspicious looking, they're usually just watched for changes.  It's actually better to have several than just one.  They don't usually worry about anything smaller than 1 cm.  

[WildMtn]

Several nodules, enlarged gland overall suggesting thyroiditis, and they are sending me back for another test (maybe a biopsy?  They're gonna call back again)

[WildMtn]

Just finished the ultrasound but I'm a bit freaked out. I couldn't see a screen during the scan and the tech didn't talk much. Afterwards,she had to "check with the dr"- in my experience that is never good. Then, she said that my GPs office should have the results this afternoon. It's already almost 2pm. That seems crazy fast. Again, in my experience that is bad news. Fast=danger to me :(. I'm scared.

[goolarra]

Well, at least there were no surprises with TSH...pretty much consistent with what's been going on.

Thyroids can grow back after removal, too...talk about the guest who wouldn't leave...

[WildMtn]

I guess the tonsils grew back, they told me it happens.

The only other test they did for thyroid was TSH, came back 0.03. Range 0.34-5.60.

[goolarra]

So, did the tonsils grow back?  Those are probably out of the realm of an endo, anyway.  

Did they do any thyroid testing besides the x-ray?

[WildMtn]

Home now, with just 10mg propanolol instead of 20.

No, I really meant X-ray. They were concerned with my trouble swallowing.  Turns out, it's my palatine tonsils (which I had removed 30 years ago!!) that are causing part of the problem. I need to  follow up with a GP Monday.  Well, an endo would be better, but for now it'll have to be GP.

[goolarra]

Well, that's not a fun place to spend a Sunday morning.

Propanolol will drop your BP along with your HR.  How much were you taking?  Some people, who have naturally low BP, can't take beta blockers to lower HR because it makes their BP go too low.  Of course, there are other beta blockers, too.

X-ray your thyroid?  Do you mean ultrasound?  

I hope you get out of there soon.

[WildMtn]

My blood pressure dropped to 90/70 this morning, so now I'm sitting in the ED. They are going to X-ray my thyroid, run a bunch of tests, and change my propanolol dose.

[goolarra]

If both those antibody tests were negative, that pretty much rules out Hashi's.  Although Hashi's is ultimately hypo, early stages can be hyper or swing from hypo to hyper.  

Your GP has done the right things.  An ultrasound will get a better look at your thyroid (nodules are quite common with Graves' and Hashi's both), and the RAIU will show your thyroid "in action".  The propranolol will make you feel better in the interim.

Another possibility is a toxic nodule, also called a toxic adenoma or autonomous nodule.  This is a nodule that functions like a mini-thyroid within the thyroid, producing T4 and T3.  However, unlike the rest of the thyroid that is under pituitary control, a toxic nodule doesn't need TSH to stimulate it to produce.  So, it produces T3 and T4 indiscriminately.  

You might also ask to be on the endo's cancellation list, which might get you in sooner.  Let me know how it all goes...

[WildMtn]

Yes, those were the antibodies tested.

I have a biggish nodule on the right side of thyroid, so not sure it Graves.

I saw a GP yesterday who ordered an ultrasound and radioactive iodine uptake test, as well as prescribed propranolol for the fast heart rate. Endocrinology can't see me until April 9th (although I plan to call around to different places Monday).

[goolarra]

Both FT4 and TT3 are over range, so it looks like you are hyper.

They tested TPOab (thyroid peroxidase antibodies) and TGab (thyroglobulin antibodies)???

The next step would be to test TSI (thyroid stimulating immunoglobulin) to confirm Graves'.

[WildMtn]

T4: 2.14  range: 0.89-1.76

Total T3: 183  range: 60-181

And two antibodies negative

[WildMtn]

Thanks!!  They finally got back to me and did order more tests.  But  I think they ordered Free T4 but Total T3. Also antibodies and something else I think.

Now back to waiting.

[goolarra]

TSH can be low regardless of whether you've ever been on thyroid meds or not.  A low TSH typically indicates hyperthyroidism (overactive thyroid), however, a low TSH can also indicate secondary hypothyroidism.  Secondary is a condition in which you are hypo because the pituitary isn't secreting enough TSH to stimulate the thyroid to produce hormone.  While the first thought would almost always be hyper, in your case, with your CT results, the second becomes a possibility almost immediately.

TSH is, at best, a screening test.  In order to pin down the diagnosis, the actual thyroid hormones must now be tested.  These are FREE T3 and FREE T4.  If these are high, hyper is indicated, if low, hypo.  Be sure your doctor specifies "FREE" in both these test descriptions.  If "free" isn't specified, they will test total T3 and total T4, which are not nearly as useful.