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Don't have Hashimoto's so what do I do?

Hi.  I posted something a few days ago.  I have a goiter and there are 5 nodules, 3 of which need to be biopsied.  My doctor suspected hashimotos disease.  I have a ton of the symptoms like fatigue, weight gain, dry brittle nails, depression, etc.  Well, the blood work came back and I was told my thyroid was functioning normally.  She doesn't know exactly why my thyroid is 3 times bigger than normal but did say either needle biopsies or remove it alltogether.  I have a panice disorder and honestly don't believe I could go through the biopsies especially after I was told they would do it twice to check on it....... I'm leaning towards getting my thyroid removed.  Anyone have any advice?  There is a little compression already occurring.  Is thyroid removal too extreme?  Medicine for the rest of my life or potentially my thyroid getting even bigger, the nodules being cancerous, etc???  I'd love to here some opinions.  Thanks a bunch!
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Avatar universal
My antibodies were low, within normal range, TSH and FT4 were in the basement of normal.  My thyroid is enlarged and I have 3 2cm nodules.  First two Endos said I was fine, third endo said that though my antibodies are low, I was probably experiencing some kind of autoimmune attack on the thyroid.  He put me on 50mg of synthyroid to try to stop the thyroid from enlarging further.  I have had two FNAs.  The first did not recover enough material to test, but the second one did.  Before you have the FNA, ask your dr. to prescribe and anti anxeity drug for you.  My first FNA was uncomfortable, to Zanax for the second FNA, different dr. doing FNA and there was only a little pain with the lidocane stick.  My FNA came back with inflammatory cells and a few follicular cells.

If you are uncertain what to do next, get a second opinion, either by a Endo or a thyroid surgeon.  Sometimes talking over with another dr. gives better insight to the problem.  Good luck with what ever you decide.
Helpful - 0
173351 tn?1201214057
Hi there!

I haven't logged in here for ages - but I did today and I really identified with your thread.

I also had a multinodular goitre.  They couldn't tell me why either, as my thyroid function always remained "just" within the normal range.

BUT I had a test for thyroid auto-antibodies, and aha... they were positive.  While the results were not specific to indicate Hashimoto's (or Graves disease) BUT it did indicate that there was an element of autoimmune disease related to my thyroid which likely had a lot to do with my goitre growth.

When first detected my thyroid nodules we of similar numbers to that which you describe.  I had it monitored for approx. 10 years, by this time there were so many nodules they couldn't be counted.

I had a total thyroidectomy 14 months ago.  Voice fine.  I also had compression symptoms.  Dizzy when I'd lean over quickly or raise my hands above my head (and my head would go red when I'd raise my hands above my head - this is called a positive Pemberton's sign).  I couldn't comfortably sleep on my back for choking feelings.  The feeling of release from all that compression and pressure was wonderful, as it grows so slowly and is always there you don't realise just how much pressure is built up in there!!!

For me personally it took a long time of research and self education before I resigned myself to the fact that (because my goitre continued to grow) that one day surgery would be the best option.

[Statistically] On average a goiter will increase by 5 to 10% in size each year.  There are some lucky people who's goitre gets to a certain size and then stops growing too.

Don't rush into the decision to have surgery, your condition is not life threatening but the result of the surgery is permanent.  

I also use to have panic attacks.  They are awful to experience.  You can and will combat them, but don't feel bad if you need a little bit of help to do that.  An experienced counsellor can be very helpful.  It takes time... but each gain is a gain... don't beat yourself up if it doesn't happen overnight or if every now and then you have set backs.  Most people aren't very kind to themselves (me included).


Anyway here's the reasoning that convinced me to go ahead and have the chop;
" I am young and with a life expectancy of 80 something; either way that is a long time to manage/observe a growing thyroid.  The surgery would have to happen one day as my goitre kept growing"

"The larger your goitre gets (past a point) the harder the surgery is for the surgeon - ie. to seperate the good bits that you want to keep from the bad bits, which also results in greater risk of adverse effects"

Also my goitre was now big enought that everday people in the street could notice a bulge in my neck (not just medical professionals).  


Go with a sugeon you have confidence in; ask lots of questions, even ask to see pictures of their work.

Best wishes, I wish you well!
From

Jen

PS: You get used to taking medication everyday, it just becomes routine.  A bit of a novelty at first.  Read my profile if you like.

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Avatar universal
Also had an enlarged thyroid w/5 nodules.  No hashimoto's disease either.  Two of the nodules were 3.5 cm.  Just had surgery on 1/22 to take the left side out.  So far it looks like they were benign, however, I have to wait until the pathologist looks at all of it before there is a final decision.  The surgery went well.  My voice is a little weak, but I don't think there is any damage to it.  If you do decide to have surgery, research doctors and choose one that does a lot of them.  The more experience they have means they have dealt with many of the issues that come up when you have this kind of surgery.  You want someone who knows what they are doing.  Good luck!
Helpful - 0
397836 tn?1201157129
Hi, I was just recently diagnosed with Hashimoto's disease. I am 23. My thyroid is functioning correctly but my TSH levels are high. I have 3 nodules 1 cm large on my thryoid that I too have to get biopsied. It can be a scary prospect. You may have a couple of things going on. One autoimmune disease usually follows with others. That is what I was told today by an endocrinologist.

I, too, was told my only option for relief was to have my thyroid removed. I am determined to get a second and third opinion if I need it. I am also seeking out alternative medicine advice. I would advise you to certainly get some backup in-person medical advice from other doctors before making the choice to remove your thyroid.

I know that may not be helpful, but I can share what helps me feel more comfortable despite the discomfort:

Many women live with this condition and they are out there (or on here) ready to ease your anxieties by sharing their stories.

Most importantly, I have found it important to be realistic, but positive. If I sit around and think about all of the horrible possibilities I am causing myself pain. I try to keep my attitude positive and optimistic. Though I am not into "new age" philosophies, I do believe keeping a positive attitude can inspire the body to want to be healthy. Plus, thinkin about the worst, just really gets you "down."

I also try to avoid reading too much on the internet that pops up on the search engines - it freaks me out too much. Connecting with compassionate people that share in a dialogue with me is healthier, encouraging, and more applicable to me, personally.

Hope this helps -
Danielle
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Avatar universal
I too can relate I had a enlarged thyroid and my thyroid was supposed to be functioning fine also and I also had brittle hair, finger nails with ridges, fatigue, weight gain out of the blue especilally around the middle for no reason, most of the time I felt out of whack, the problem I had what made my thyroid enlarge was that it became Toxic so it sounds crazy but my thyroid was my own worst enemy, I have had mine removed a total thyroidectomy on Dec 6th 2007 and I feel so much better to almost normal again it's been a long time that I almost forgot what it felt like to feel normal, and my only regret is that I did'nt have the damn thing removed sooner, but I had to find a Dr to discover what the problem was which took several before I found one who got it right, also the surgery for me was no big deal I went in the 6th and was out of the hospitol the 7th although I would advise when finding a surgeon find one that specializes in thyroid and check his credentuals and his success rate, I hope this was some help to you, I wish you the best ( Hug )
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Avatar universal
Thank you very much.  All of this came down last week so I'm a baby when it comes to understanding about all of this.  I'm a little scared.  I use my voice for my job and I don't want my voice to be affected if I get my thyroid removed.  Uggg! Take care!
Helpful - 0
362387 tn?1207274119
I really don't have any advice. I've fairly new on this forum.  I was just diagnosis with Hashimotos.  There are a lot of experienced, knowledgable people on here.  Just be patient and they will answer.  Good luck, I'll keep you in my prayers.  Jessi
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