Aa
Aa
A
A
A
Close
Avatar universal

graves/hashimoto? confused

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?

40 Responses
Sort by: Helpful Oldest Newest
Avatar universal
That's over a year and a half ago.  You might ask your doctor to order a follow-up, especially in light of this new symptom.  

When you last saw your doctor did he palpate your thyroid?
Helpful - 0
Avatar universal
I had an ultrasound in August 2013 which showed enlarged thyroid.
Helpful - 0
Avatar universal
If your thyroid hormones are off, it can be almost impossible to lose weight due to the slowed metabolism.  

GERD is a symptom of hypo.  

Have you had a thyroid U/S?
Helpful - 0
Avatar universal
I agree, a year is too long.  So I will call and see about at least doing bloodwork.  I really don't complain and haven't noticed much different throughout all the years other than going from having a decent weight to being mildly fat, which I HATE but whatever.   I guess I must eat less and workout more. (I really don't eat much, but don't workout much either, to be honest).  Ok, the one thing bothering me was the recent development of GERD symptoms and dr. gave me an RX for nexium, but even more bothersome than that is a most embarrassing symptom.  It happened to me again tonight.  I had some pasta for dinner and began violently choking and coughing to the point of having to throw up.  This doesn't happen at every meal (or I'd at least be skinny, lol) but it happens often enough and is unpredictable enough that it is screwing with my life.  I can't go out to eat, I just don't know.  I am not taking big bites or doing anything weird.  I've obviously been eating my whole life without problems before the last six months or so.  I mentioned to my doctor but he really blew it off.  It's really embarrassing but if not related to enlarged thyroid what could it be?
Helpful - 0
Avatar universal
I should have added that when both TSI and TPOab are elevated, i.e. you have both Graves' and Hashi's, the likelihood that you will end up hypo is greatly increased.  So, it could be that you are heading toward hypo now.  

I agree with Jenn1302 that a year is too long between lab work, especially in light of your already slightly elevated TSH.
Helpful - 0
Avatar universal
One of the best things you can do for yourself is get a copy of all your lab reports and keep track of your own history.  If you jot down on the report what meds, if any, you were taking prior to the blood draw and any symptoms, you usually can start to discern a pattern.  

AACE recommended many years ago that TSH range be changed to 0.3-3.0.  Labs and doctors have been slow to adopt that range.  On this more reasonable range, your TSH of 3.6 would indicate that you are mildly hypo.

How do you feel?
Helpful - 0
Avatar universal
I know TPOab was elevated.  I don't know about the other.  As for my most current testing, I didn't get numbers.  All the doctor said was that my TSH went from 0 to 3.6 which he liked, and my free TSH was normal.  I don't know anything else.  
Helpful - 0
Avatar universal
Remission of Graves' is possible.  Many people go into at least temporary remission.  

I know your TSI was elevated, and I just looked above but couldn't see if your TPOab and/or TGab were also???

Helpful - 0
Avatar universal
If you have both Graves and Hashimotos, your thyroid can fluctuate a lot. You should probably get tested more than once a year. Also, is your TSI in the normal range? Wasn't your last TSI test out of range?
Helpful - 0
Avatar universal
I have been completely off all medication for almost two years.  Other than not liking my current weight and terrible acid reflux, I feel fine.  I just don't like the goiter in my neck, obviously.  Remission is possible?  My doctor says just re-check in a year.  WOW
Helpful - 0
Avatar universal
Are you taking thyroid meds now?

It's possible that you are in remission.  

How are you feeling?
Helpful - 0
Avatar universal
ok, I just had my levels tested again because I refused RAI, and my dr. says I am in normal range!!!! (still have goiter).  TSH 3.6 and free tsh normal (don't know numbers).  Is this possible?  now what?
Helpful - 0
Avatar universal
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.  
Helpful - 0
Avatar universal
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.  
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.  
Helpful - 0
Avatar universal
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?
Helpful - 0
Avatar universal
You should really have it tested before you try supplementing it.  Pernicious anemia is the inability to absorb B-12 through the gut.  People who have PA have to inject B-12 for that reason.  If you're simply deficient, oral supplements should work just fine.  If you do have it tested, keep in mind that you want to be well up into the range for B-12.  Anything under 500 is a distinctly questionable result.
Helpful - 0
Avatar universal
I guess I don't know just looking for help anywhere I can get it.
Helpful - 0
Avatar universal
Most people who inject B-12 do it themselves at home.  I imagine it would depend on the endo and whether he keeps B-12 on hand or not.  

Are you deficient in B-12?
Helpful - 0
Avatar universal
Also, I have been reading about b12 injections, can the endo do them? will they? is it worth asking when I meet my new doctor?  
Helpful - 0
Avatar universal
I have an appointment in April with a new doctor.  I have not taken any thyroid replacement since September.  My former doctor asked me to stop to aid in testing.  I am suffering from daily headaches.  I forwarded my new doctor all of my labs and I am just waiting.  :(
Helpful - 0
Avatar universal
I honestly could not tell you. I was young and a new mom at the time. I thought I was just working to much and with an 8 month old I never bothered to see when they symptoms actually came about.

Only reason I was going to the doctor was due to headaches. The doctor at the time treated me for depression due to be a new mommy and working full time. I had been going to the doctor for like 3-4 months prior to my neck swelling. I had a very uneducated dr. at the time ...

I only found out about the thyroid by chance. My necked swelled one evening and well being 88 lbs  it was noticeable to my dad. I went in after hours and it took the on call doctor 30 seconds to tell me it was my thyroid. All I had to do was stick my hands out for him and he knew right away. (My hands were trembling so bad I never even noticed...

If I had to guess, it was probably more like 6 months of being untreated, but only because I was not aware of the changes in me.
Helpful - 0
2
Have an Answer?

You are reading content posted in the Thyroid Disorders Community

Top Thyroid Answerers
649848 tn?1534633700
FL
Avatar universal
MI
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.