calling all SWELLERS -

[mommy2two2008]

Please tell me, did your swelling thyroid stop swelling with the correct dose of thyroid medication.  Were your blood levels normal and you still had the swelling?  I have a swelling thyroid and "normal" blood levels on the days they took my TSH and Free T4.  My TPOab was <10 on April 3.  TSH was 1.040 (.3-5.0) and my FT4 was 1.45 (.73 - 1.95) on April 3 and after thyroid medication TSH was 0.557.  I AM STILL SWELLING AND THE SWELLING IS GETTING BIGGER IN THE THYROID. No other antibodies were run and no FT3.

Please let me know what you think.

[hypo/hyper]

Hello,
I have to say, you sound just like me.  I was diagnosed Hashi's 2 years ago.  They also gave me the ?diagnosis of carotidynia?  which I never really bought into.  My endo dismissed the symptoms because the synthroid had my levels in check.  However, I can tell you that I swell up when:

1) I exercise at a moderate level
2) The week before and a couple days into my period
3) Stress
4) If I fiddle around with my neck area too much.

During the swell ups I feel like I go into a hyper stage for anywhere from a couple of days to about 2 weeks.  Then it is back to somewhat normal for awhile.  At one point, my ENT biopsied a salivary gland because it showed up enlarged on a CT scan of my neck after I complained of the persistant choking feeling.  On top of the irritated thyroid, my salivary gland showed that I had inflammation in it, NO CAUSE was ever found.  I personally feel that all the inflammation in my thyroid caused the inflammation in the salivary gland.  The salivary gland resolved over time, but the thyroid swelling is still working overtime.  

[mommy2two2008]

Thanks AR!  I have no clue why the ENT did not order bloods, probably because I told him the stupid (and other choice wording) endo just ordered one and my TSH was 0.557.  I guess I was too busy crying to be proactive.  I was really an emotional wreck that day.  I guess I really had carotidynia, the upper neck swelling resolved (right under ear to I guess the hyoid bone if that's what that part is called.)

I don't think I've been checked for iodine deficiency, but I would not know.  My lab results from April are under my journal.  I have not had the ESR or sed or whatever either.  I had an ANA test and that was negative but I do not have a copy of the test. The GP just said normal.

Again, thanks AR - if you have some ideas on intervention, I'd love to hear them.  

[AR-10]

Wasn't a sweller, so I have no experience. I mean, my thyroid did swell, but not enough to notice.

I think it may require intervention, but I don't know what that would be. The doctor who put you on Levo was trying to reduce the swelling that way, but obviously it is not working.

Why the heck didn't the ENT you saw order thyroid tests while you were in the exam room?

Have you been checked for iodine deficiency?

[mommy2two2008]

So - there are no other swellers?  You lucky devils :)  Hope everyone is having a good day.

[mommy2two2008]

Thank you MM!  I really appreciate it.  When this started in April, I was just told I had thyroid swelling with normal bloodwork.  When I went back, I had a lower TSH but he refused to run anything else.  He gave me a script for the .25 Levo, and I have been taking that since May.  I am on doc #5 and I don't go back to see him until 7/30.  He is an ENT and diagnosed carotidynia with a separate thyroid problem but has not run his own labs on me.  After 4 months, is is safe to say this crud is not going to stop without some further intervention?  I just don't know.

[medicmommy]

I'm only 1 week into the Synthroid, (hypothyroid from thyroiditis) and I think the thyroid swelling has finally stopped..and I think I'm nearing the therapeutic level because my body temp is normal again and I feel more sensitive to ambient temps...I can remember things again, and I'm not pooped out all the time...(and I'm losing weight without feeling like I'm starving to death!!!) No new labs as yet, but my TSH just before Synthroid was almost 60...maybe there's hope for you too? Hang in there! if I understand your labs right, you're still a bit hyperthyroid...But changing...Stay away from iodine containing foods still...Take care...                                                                                  ~MM