16 year old with hyperfunctioning adenoma

[savsmom]

Hi. My daughter is 16 years old.  She was just diagnosed with a hyperfunctioning adenoma (2.8 cm) in the right lobe of her thyroid.  She also has numerous other nodules in both lobes (one on her left lobe is over 2 cm but doesn't seem to be causing any problems).   Her TSH was ( .14) and she has high antibodies.  Don't know the numbers.   She is having multiple symptoms including fainting, severe headaches, sensitivity to cold, dry skin, constant eye twitch, extreme fatigue, fogginess, forgetfulness,  low blood pressure and feeling like she can't swallow when she lays on her back (to name a few).  We are being sent to an ENT but don't have an appointment yet. She has not had a biopsy.  My questions are:  How do they treat this?  Is surgery usually the best option?  If so, do they normally remove the whole thyroid or just part of it? And if they remove the whole thing, will she have to deal with hypothyroidism?   Any info would be greatly appriciated.  I am so worried.

[goolarra]

Your description of her symptoms is exactly what I expected to hear.  Her levels must be swinging day to day.  When the hyperfunctioning adenoma is putting out lots of T3, she'll have hyper symptoms.  When it puts out less, she reverts to being hypo from her Hashi's.  I know someone who had this same problem.

It's good that you got an ENT appointment relatively soon.  What about Eugene for an endo?  That's a fairly good size medical market.  It would save you a couple of hours of travel time each way.  You don't have any connections in Bend, do you?  I have an endo I think the world of.

Best of luck with the ENT.  Please keep us updated on his recommendations.  

[savsmom]

Looking at the lists of symptoms for both hyper and hypo, she has just about every symptom on both lists.  But she definately alternates between the two, almost it seems, on a daily basis.  Is that weird? And it seems extreme either way.  For instance, some days she is so tired she can hardly function, all she wants to do is sleep and other times she has insomnia and can't sleep all night.  Most the time she is very constipated but some days she has diarrhea.  When I look at the sypmtoms list for both, she might as well have her name written next to both lists. In addition to those lists, she has a constant eye twitch, severe headaches, dizziness everytime she stands up and faints (or nearly faints) 2 to 4 times a day. She has an appointment with an ENT for Feb 7th.  I am looking for an endo at OSHU.

[goolarra]

You might start a search for an endo at the same time as you're being evaluated by an ENT.  It can sometimes take several months to get an appointment.

Interesting labs...  The rule of thumb for FT4 is midrange (it doesn't work for everyone, but it's a place to start).  As you can see, your daughter's result is on the floor.  Considering that, her FT3 (which often has to be in the upper half to upper third of the range) isn't too bad, in the middle third of the range.  That's thanks to the hyperfunctioning adenoma.

TSH isn't making sense, but it often doesn't which is why we are so opposed to using it alone to evaluate thyroid status.  

As I was looking at your daughter's labs, it struck me that, aside from TSH, they weren't too different from my last labs, and I'm euthyroid.  When I went back to look at my exact numbers, they were almost identical.  My TSH, however, was 16.7.  It stays artificially high due to a pituitary issue.  I'm quite comfortable at these levels, but I'm not in the majority by any means.

My guess is that, due to the hyperfunctioning adenoma, her FT3 is probably very volatile, perhaps swinging day to day.  Do her symptoms come and go?  Does she have both hypo and hyper symptoms alternating?

[savsmom]

so here are the lab results:
T3 FREE:  3.4 (ref. range: 2.3-5.0)
T4 FREE:  .76 (ref. range: 0.75-1.54)
TSH:  .14 (ref. range: 0.40-4.85)

Any input?

[savsmom]

Thank you everyone for all the helpful advice.  I don't have the thyroid labs.  I called and requested them from the PCP.  Should be able to pick those up later this afterroon and I will post them.  I talked to the PCP's nurse and asked why we are being sent to an ENT first and she said because the doctor feels that, based on the tests she has had so far and her symptoms, she needs to be evaluated for surgery. I will post the labs as soon as i get them.  Thanks again

[medicmommy]

Hmmm...Maybe you are right...Perhaps her Dr's first concern was that she had an urgent obstructive process going on (e.g. internal tracheal swelling or something related to thyroid enlargement) and needed eval by an ENT first...I'd still be making phone calls and at least ask what the plan was and why an endo wasn't involved yet...~MM

[Barb135]

I don't think anyone checked the wrong box on the referral slip -- ENT's can be very helpful.

It was an ENT that I was sent to, when my pcp wasn't treating me properly.  My ENT is the one who sent me for the antibody tests and ultra sound that my pcp refused to consider.  He was the one who diagnosed me with Hashi's, then sent me on to an endo, telling me that if I needed a biopsy, surgery or simply wasn't getting the treatment I needed, that I should not hesitate to come back to him.  He said he doesn't usually specifically treat hypothyroidism, but could/would, if necessary.  

I've no doubt that your daughter will ultimately be sent to an endo, but the ENT can go a long toward getting treatment started.

It would be very helpful if you could post your daughter's thyroid labs - you already posted the TSH; what about Free T3 and Free T4?  If those were done, please post the results, along with the reference ranges, since these vary lab to lab.  I also second goolarra's question: which antibody tests were performed?  

While I'm not a fellow Oregonian, I have good friends there (in Sisters)...... I second the welcome.

[goolarra]

A hyperfunctioning adenoma, sometimes called a "toxic adenoma" or a "toxic nodule", is a nodule that produces abnormally high amounts of T3.  It is almost like a "mini-thyroid" within the thyroid.  Furthermore, it produces hormones independent of the influence of TSH.  It just keeps pumping out T3 and is unregulated by the pituitary.

Which antibody tests has your daughter had?  TPOab (thyroid peroxidase antibodies), TGab (thyroglobulin antibodies), TSI (thyroid stimulating antibodies)?

Nodules over 1 cm are usually biopsied.  Perhaps your PCP has referred your daughter to an ENT for that reason.  However, I do agree that referral to an endo for a complete diagnosis and treatment is what's important at the moment.  Your endo can then refer you to an ENT if he thinks surgery or biopsy is indicated.

"How do they treat this?  Is surgery usually the best option?  If so, do they normally remove the whole thyroid or just part of it? And if they remove the whole thing, will she have to deal with hypothyroidism?   Any info would be greatly appriciated.  I am so worried."

Both meds and surgery are options in treatment.  Further testing would be necessary to know which is best for your daughter.  Once again, whether the whole thyroid is removed or just a part depends on many factors including biopsy results.  If they remove the whole thing, yes, she will be hypo for the rest of her life (probably will require meds even if only part is removed).  However, hypothyroidism is a treatable condition.  Read all you can before making your decisions.

Welcome, fellow Oregonian, to the forum (I'm in Sisters).

[medicmommy]

I can't help but wonder if someone checked the wrong box for referral or something...Your daughter needs an Endo, not an ENT (they are next to each other on specialist referral lists)...I'd be calling and asking why the ENT as they are not going to be able to do much (if anything) for the thyroid issue...
It will be helpful to get copies of her chart, lab tests, and scans (on a computer disk) and carry them with you when she sees the new doctor. (I speak from experience!) They may look at you a bit funny, but they will be able to have a complete picture of what is going on and won't be able to say..."Oh, we don't have those results..."
I ask about the parathyroids because they sit next to the thyroid and control the body's calcium levels which, when high, cause all kinds of problems. They are teeny (size of rice grains when healthy) but now and then one will turn into a tumor (almost always non-cancerous). The adenoma the tests refer to may be a "hot nodule" in the thyroid, or it may be slightly under it (parathyroid) and appear as if it is thyroid tissue...An endocrinologist will be able to sort that out...Let us know what you find -and good luck. I know you are worried, but it sounds like you are going the right direction to get her taken care of...~MM

[savsmom]

Hi, thanks for responding.  No biopsy is sceduled yet.  I'm wondering why we are seeing an ENT as well.  She has not seen anyone but our primary care provider so far.  She has had an ultrasound, the iodine uptake scan and blood work (all of these were ordered by our PCP).  I'm new to all this so I'm not real sure what the parathyroid is.  

The uptake scan results say:
1. abnormally increased thyroid uptake at 6 (20.5%) and 24 (35.1%) hours.
2. Focal increase in activity right inferior thyroid lobe-hyperfunctioning adenoma and there is mild apparent enlargement of the right thyroid lobe.

I am researching the doctors at OHSU.  I think it's well worth the drive to find a good specialist.  Thanks for the advice.  And we have good insurance (thank goodness).  Just pretty scared right now.  This hit us out of left field.  I had never given the thyroid a second thought.  Knew it was there but that was about it.

[medicmommy]

Hello,
Has your daughter actually seen an endocrinologist? I'm hoping she has with the diagnosis of the thyroid tumor and nodules. If not, she needs to see one over an ENT (Ear, Nose, throat doctor) ASAP. Also, do you know for sure if the adenoma is thyroid or parathyroid? A parathyroid tumor could change how the Drs approach her care as well.
At her age and with this many symptoms the Drs should be treating this aggressively. If you have issues with medical insurance or don't have an endocrinologist, check out OHSU. It is a teaching hospital that has many highly knowledgeable (and cutting edge) doctors. I know it is way up in Portland, but it would be worth the treatment if your daughter isn't getting proper care. Others here can answer treatment and prognosis questions better than I can. I am left wondering, why the ENT, and is a biopsy scheduled?