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How long do you monitor your thyroid nodules? Did they grow or shrink o...
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How long do you monitor your thyroid nodules? Did they grow or shrink over time?

Hello! I wanted to share my situation and would appreciate any comments with your experiences. Six months ago I wasn't feeling so well, had symtoms (symptoms) of hyperthyroidism, went to my doc who checked my thyroid labs - the results were fine. Several days later, my neck was swolen so I went for a thyroid ultrasound and it revealed I have 8 thyroid nodules! One is 4.5!! I was so worried, so I went for a biopsy on the larger one and it came back benign. Now its my 6 month follow up, after another ultrasound all the nodules remained the same, except for one. I am now getting that one biopsied this week. I am sure it will come back benign, but I am wondering how long have people monitored their nodules for? Did your nodules grow or shrink over time?  I am getting so sick of this biopsy routine already. I am scared to death to have a total thyroidectomy - I have heard nothing but horror stories about the post-opp. balancing of the hormones. My doc thinks it would be easier to just have it out - no more biopsies ever - but its my choice. I don't want to have surgery if I don't have to. My thyroid is functioning normally and the nodules don't bother me..well, sometimes they do, like after flying, etc. I just have so manynodules to minitor!! What would your advice be and why? Thanks,
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139126_tn?1255040591
I had a multinodular goiter my entire life.   Same situation as you find yourself in.   Thyroid levels were always normal.   Would have an ultrasound every other year; biopsies every 3-4 years.   It would flare up every so often...swelling, aching, choking sensation etc.  My endocrinologist and my ENT kept telling me to just have it removed.   Why not they said...you just take a pill and go on with your life.  I had no intention of doing that and just lived with this routine until I was 54.  At 54 it started to really mis-fire and I was diagnosed with a toxic-goiter.  I lost 30 lbs (I was only 120 to begin with), I lost muscle mass, my BP and pulse rate were off the charts...all sorts of awful stuff.   I wound up having it removed.   That was almost 2 years ago and I'm one of the lucky ones who has no horror story to tell.    I feel fine.   That being said, if I had not wound up with this toxic-goiter I would not have had it removed.   I would have just accepted the fact that the ultrasounds and biopsies were part of the deal.   Your thyroid controls everything and in my mind unless there is a medical reason to have it removed it should be kept.   Drs are too quick sometimes to minimize this type of surgery.  Almost like it's more convenient to just have it removed than a medical necessity.   Good luck.
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Avatar_n_tn
Thanks for your comment. Exactly what you have described is what I am going through, except for the toxic goiter part. However, I do think the nodules are causing my thyroid to produce too little or too much harmone....at times during stressful situations or flying, roller coasetr rides, etc., I go through a short periood of fluctiation between hypo and hyper...then it balances out. During this time, my heart races, my bp is high....so I must have an occasional toxic goiter as well. So, even if my biopsies come back as benign, this is something else to look into...a toxic goiter. I bet anything I have this occasionally....now I am wondering if I should wait for it to become too serious....I guess only time will tell. I am glad to hear a positive outcome after surgery...that made me feel better!! Is there a test that determines if you have a toxic goiter?  Thank you  
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Avatar_f_tn
I had them for at least 9 years, they finally found cancer and I had my thyroid removed.  The symptoms for that were hoarseness, swallowing issues, blood pressure spike, hot/cold spells, night sweats and I lost wieght.  If you ever get stuff like that, you should check it out.  If they are just nodules, then you have to decide at what point enough is enough.  If the nodules ever get highly vascular on ultrasound or get calcifications, you need to have it checked out.  Eventually you will probably have to have it removed.  I also had Hashi's, so I was eventually going to lose all function anyway.  By the way, I had normal thyroid function right up until they took it out.
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Avatar_f_tn
Hello,

Regarding your question, my doctor said that if the nodules weren't causing a problem, they would just monitor them from time to time. I think she meant their growth. As it happens I have 4 cysts with very mild hyperT symptoms, fluttering heart about twice during the night which lasts for a few minutes. Hand tremor now and again, not often, and not for more than half an hour and a few other symptoms. A second doctor I saw is sending me for more blood tests. I'm not on any medication.  I'm currently researching the use of nutrients to shrink nodules. Some people's nodules appear to be caused by serious deficiencies in nutrients, especially magnesium, copper and potassium. If you want to know more check out this link:  http://www.medhelp.org/user_journals/show/209378/My-Story---Simplified-Version?personal_page_id=938759 where this guy cured his own nodules (+ his hyperT symptoms) by using megadoses of nutrients that he was deficient in.

Another guy who cured his hyperT (though I don't think he had nodules) has a website called www.ithyroid.com. On one of the pages he lists the nutrients he took.  Some of the links don't seem to work but if you googled "ithyroid.com recovery from hyperthyroidism" it should take you to the relevant page. I know you don't seem to have any other symptoms apart from your nodules, but could it be possible that nodules grow because we're deficient in nutrients? I don't know. Every success to you. :-)
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Avatar_f_tn
I had a TT done almost 17yrs ago. I guess I am ONE of the lucky ones.

No horror stories.....

I was 23yrs old; I continued on with my life. Marriage, raising our son & always working full time.  Nothing has changed for me, except getting older.
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Avatar_n_tn
Thanks, it is nice to hear that there are not always horrible stories following a TT. I am going through with the surgery at the end of March! Thanks for all of the replies! They were very helpful!!
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Avatar_f_tn
I have multinodular goiter disease and 2 years ago went to have my thyroid removed.  During the surgery the Dr. only took half of the thyroid because he stated that one of my vocal cords was weak and that he opted to only take half to be on the safe side.  Now after 2 years they want to take the other side.  The doctor also disclosed that he didn't believe that there any damage to the vocal cords, but that their testing machine gave a false positive.  

Now my question is do I really need to take the other part of my thyroid?  I don't want to go through the surgery again, but the doctor seems to think I should.  I don't understand why there is such a push to remove it since the nodules are beign and have stayed the same as far as size.  Any recommendations?
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Avatar_n_tn
Hi, well I was diagnosed with several nodules, tests came out benign, so good for that, now they have grown and my thyroid has grown too much for me. All the Docs want the poor thing to come outt, however, I hear horror stories about the meds you take, like gaining 20 to 30 lbs and cant get rid of the weight. Have you gained weight when it was taken out?


wolflady421
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Avatar_f_tn
I wonder if anyone else has had a similar experience to me.  It all started a few months ago when I started to feel generally unwell & my ankles were always swollen & my hips hurt after walking & then I got a stiff shoulder.  After blood tests I was told I had a severe vitamin deficiency.  All seemed ok for a few weeks then I started to feel a weird pulling/tight sensation on the right side of my neck.  I have suffered from an overactive thyroid in the past but when my thyroid results came back this time it was the T3 levels that were slightly up not T4 as usual. Now my neck feels very strange & I sometimes feel I have something stuck in my throat.  The doctor is sending me for a thyroid ultrasound but I'm sure he thinks I;m a hypochondriac.  Also I have lost 10lb in a month & ankles are still swelling.  Any ideas, do you think this may be thyroid nodules?  Thank you in advance for any advice.
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649848_tn?1357751184
Nodules, typically, don't cause any symptoms, unless they grow large enough to interfere with swallowing or breathing.

What were your exact lab results and be sure to include reference ranges which vary lab to lab and have to be posted with results.

T3, specifically, Free T3 is the hormone that's used by the individual cells, and is the hormone that correlates best with symptoms.

Will be able to tell you more, once we see your lab results.
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Avatar_f_tn
My nodules (cysts) grew and shrank over time (during thyroid medication). One was at its largest nearly 3 cm in diameter, then all have sharunk to below 1 cm. Now my thyroid gland itself has shrunken to very small. I do not know what was the cause of my hypothyroidism.
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649848_tn?1357751184
Were you ever tested for Hashimoto's?
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Avatar_f_tn
Thyroid antibodies have been tested but they have been negative. I may have been slightly hypothyroid for tens of years. It is possible that I have been hyperthyroid on the eighties. I worked much with enthusiasm - and burning out.

Thyroid medication was started at the end of 2006, first with lower doses. Before 2006 I didn't know the condition of my thyroid gland.
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Avatar_m_tn
I am 48 and have been suffering from symptoms of Low T and shortness of breath while exercising. i went on axiron and it did not work. My primary sent me endocrinologist . She immediately felt a nodule which turned out to be 3.9cm! I had been told all along that my Thyroid was normal. Now I am not sure if the thyroid I'd causing the low t or not. I am waiting for biopsy results . I am not sure if thyroid is keeping t low. Not sure what to do next...
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Avatar_m_tn
What do you mean by low T?   Temperature, or thyroid hormone?

Were any thyroid related tests done for you lately?  If so, please post results and their reference ranges shown on the lab report.
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Avatar_m_tn
Hi- I am 38 year old female....no thyroid problems in the past, not tired.  No family history of thyroid issues.  I had a terrible what I thought was a cold and congestion for about three weeks- Last Thursday I bent over and my cheek bones and teeth hurt.  Went to finally go to the prompt care and as I was getting dressed noticed a lump on the right lower end of my thyroid gland.  Freaked me out.  I mentioned it to the doctor I saw at the prompt care and she said it was probably inflammation from infection.  She didn't feel it or really examine it----?  I have also had this cold type sensation from my lower left back to my thighs.  I don't know if the two are related.  I have had back problems in the past...those doctors related it to scapula bursitis and tight hamstrings and rotated hips....I just finished zpac and low dose steroid yesterday. Should I wait or just go ahead and have this lump checked out?
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649848_tn?1357751184
Since you just finished a zpack, you could probably wait a few days to see if the lump subsides, but when in doubt it's always a good idea to have lumps checked out.  You could go ahead and make your doctor appointment.

I doubt the lump and back issues are related, so you might want to have your back checked out, too.
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