Regrowth of thyroid tissue

[authrjenn]

My doc just told me my thyroid is trying to regrow itself and producing its own TSH. This is why ZI am always over-active. Go figure!


This discussion is related to Thyroid tissue regrown?.

[theprincipal]

Thank you.  I go back for a scan in one week.  I'll let you know the results.

[AR-10]

Since you didn't have cancer, you should be able to ablate the tissue with a very small dose of RAI, assuming the tissue shows the ability to uptake.

Not sure if you will notice any difference or not. That depends on whether the tissue has been able to produce hormones or not.

Best of luck, and welcome to the forum.

[theprincipal]

In 1999 I had my thyroid removed, all except a very small amount near my voice box, which was common practice.  It had become massive on one side and had started choking me due to nodules which had been growing for some 12  years.  About a year later, I noticed a small lump in the same area.  The  doctor who did the surgery assumed it was scar tissue because she removed everything.  Three of my parents four daughters have had the exact same procedure for the exact same problem.  Two of the three and had to have thyroid tissue removed a second time.  In both cases it was biopsied and identified as thyroid tissue.  My second surgery was performed on July 14, 2008.  However, this time, as I write this, I am undergoing radioiodine treatment with the expecctation that the radiation will destroy any thyroid tissue that remains.  The doctor that did my biopsy said that she had heard of  thyroid regrowth and had seen it herself  in two other African-American females like muyself.  My TSH levels have always been normal and I have been on synthroid for many years.  When my sister had her second surgery I assumed it was because she did not take her meds (which she didn't).  I was very concerned about my growth and did not figure it to be thyroid because I took my meds faithfully over the years.
She has not had radiation treatment and I am having it now. I just didn't want to chance a third surgery.   Wonder if there will be a difference? Will my sisters have to have theirs removed a second and third time?
Who Knew?

[AR-10]

Your doctor didn't actually say your removed thyroid was trying to produce TSH, did he/she?

The thyroid does not produce TSH.

If you had a TT, your thyroid might grow a bit of new tissue if you did not have RAI, but it can't grow enough to produce hormones. You may have enough thyroid tissue left to produce hormones because the TT was not a TT.

With your parathyroids and your vocal cords involved, a TT is a medical impossibility. They may call the operation a total thyroidectomy, but a total thyroidectomy involves RAI to finish the job.

You may have enough gland remaining to produce hormones. You cannot grow enough additional thyroid gland in a few months to produce hormones. The doctor is either ignorant or covering up the truth.

Have you had your levels checked? Maybe your dosage is too high or you are getting too much T3 from your Armour.

[Denyrae]

I had a TT in 2013 for a goiter that was so large it was making it hard to swallow anything let alone breath. I had been dx hyperthyroid since a teenager. My TT was based on years of fine needle biopsies that came back inconclusive insufficient specimen, to finally 15 years later biopsy came back suggestive of cancer. I was immediately sent for surgery, findings were cells were undergoing changes, dr said i cant say it was cancer but i cant say it wasnt, just know you will never get thyroid cancer now. so total thyroidectomy done.
Was never given rad. Iodine, which i have never understood. Totally confused.
Always been on my mind.
Now ive been having reoccurring sinus infections ear infections, most recently along with both my lymph nodes have swollen up in my neck first, then my groin and behind my knee all right sided. Pain in my rifht shoulder and collar bone, so hot at night cant even cover up, headaches, low grade fever, tired, thick throat, itchy itchy legs shoulder neck.
I feel a wreck.
Im so fearful it was cancer and it has spread. I feel like the goiter is coming back, stupid sounding but its so thick in my throat again.
Anyone have any advise please????
Ps. Thank you everyone for your testimonials, it is helpful knowing we are not alone in this.

[stella5349]

After my appt yesterday with my doctor - and that question was asked by me about my thyroid production.

The only medical way to know what is going on is a new uptake scan. Did you have that?

[redheadaussie]

When did you have your thyroid out? Did you have it all out? What levels are you at now?  I am curious as to what medical evidence your doc has shown that it is growing back. Or was this just the doc's 'professional opinion' (as we all know, they do think they know everything!)
   If you have had it out, it is quite possible some thyroid cells are still in there, but highly unlikely to produce enough hormones to create hyperactivity.
Love to hear more!