graves/hashimoto? confused

[alikat1205]

I was diagnosed hypo thyroid  with hashimoto's about 7 years ago and have done fine on synthroid 50 mg since that time.  About August of this year I noticed the sudden growth of my thyroid, huge and noticeable goiter where only the month before I had nothing, so I made an emergency appointment to my doctor.  She tested my tsh (only, no other thyroid tests) and got a reading of .02 and discontinued my synthroid.  I went in for a repeat TSH four weeks later and it was still .02.  I went four weeks later and it is .02.  My doctors says she suspects Graves AND Hashimotos.  How is this even possible?  She called today and recommended repeat testing in 6 weeks.  

I am uncomfortable with this plan.  First off, the huge goiter appeared nearly overnight, and that doesn't sound good.  Second, nothing is changing, so what exactly is she waiting to find out?  She hasn't answered these questions, just ignores me.  Can the goiter shrink?  If not, what are my options to get rid of it?  I don't like it or want to keep it.  Is there a possibility it is more serious?  Is doing the TSH only acceptable?  I mean, if it not changing, it seems like maybe more information is something to think about, but she doesn't think I need anything by TSH test.  Should I just keep on going for another 6 weeks (which is really more like 8 because of the holidays) and not treat this very low number?

[goolarra]

I totally understand what you're feeling.  I was diagnosed with WPW syndrome (causes tachycardia) and told there was a "procedure" to fix it.  You wouldn't believe how casually they discussed this procedure, which turned out to be cardiac catheterization.  In fact, the doctor who did these procedures at the time came in from a bigger city one day a month.  Until I read about this procedure, they had me scheduled for a consult AND a procedure the same day.  They didn't so much as send a brochure.  The person who did the scheduling acted like I was being hysterical for wanting to speak to the doctor and then think about it for a while.

I sympathize with you.  Make sure all your questions are answered before you decide on treatment.  

[alikat1205]

yes, that's what I am experiencing, he thinks RAI is so routine (and for him it is, for me, it is not) and no big deal, and for me it really feels like quite a big deal.  

[goolarra]

Your doctor might well be right.  Since you're already showing signs of TED, you want to lower your TSI count as much as possible as soon as possible.

However, RAI is a big step.  It's a routine procedure, so doctors tend to downplay the impact on the patient.  I've had doctors do that with me and nearly fell off my chair when I read about the procedure online.

You might end up having RAI, but I just think a second opinion would be a good idea.  Doctors have their biases, and this one may prefer RAI over meds for most of his patients.  As I said, after RAI, you will be hypo and on replacement hormones for the rest of your life, so this is a big step.  It's not the end of the world; lots of us are on meds, but I just think a second opinion is always good before doing anything permanent.

[alikat1205]

he said hypo, but hyper makes more sense.  he did not give me numbers on T3/4.  It didn't sound good to me when I googled, but he basically blew off concerns, even when I called him after googling (which doctors must hate, I suppose).  He is completely against medication for me.  He thinks it won't change anything, because it treats symptoms and not antibodies.  

I really don't know where else to go :(

This is all so frustrating.

[goolarra]

Do you have the exact results and reference ranges for your FT3 and FT4?

Subclinical hypo or hyper?  I think you meant to say hyper.

I don't think you can call RAI "casual".  There is some down time to the treatment as you can't be around small children, pregnant women or small pets for a while after the treatment.  You basically have to be isolated until the radiation wears off.  

After RAI, you will be hypothyroid, which presents its own problems.  You will be hypo for life.

Medication can help you.  Most people seek a solution in medication first.  If your hyper can't be controlled with meds, then it's time to consider a more permanent solution, like RAI or surgery.  However, meds can help you and give you time to research and learn all you can about the disease.

I'm afraid to say that I think you might need yet another opinion.  

[alikat1205]

Update----

I got a new doctor, who is at least better at explaining things than the old dr.  
no nodules, just enlarged more on the right than left

He says the results are tsh .02, free t4  ok, free t3  ok and this means
subclinical hypothyroidism.  No nodules, but I do have a very enlarged thyroid, damaged and scarred by years of thyroid problems.  

While it may be Graves, I am not suffering from weight loss (I wish) or hear arrhythmias, so there is no urgency, however, if left long term this could cause health problems, and I am already exhibiting TED, so he suggests radioactive iodide.  He makes this sound like a very casual treatment with no down time or side effects.  True?  

He does not suggest medications because I'm not having a ton of really bad symptoms (you know, aside from the crippling headaches and TED) and medication can't really help me.  

I don't think I like the radioactive iodide treatment, but I know I need to do something, thoughts?