Today I went to one ENT surgeon and will go to another on Aug 7th. I am not happy with taking out my thyroid because it is functional but it has been enlarged with one bug nodule on my left lobe for a few years now and is feeling like its compressing. All my levels of hormones have been normal all along but now because of its size is competing for space in my throat. I was just told I have a small nodule on my vocal cord making my voice raspy and the ENT doesn’t think my goiter is contributing to my voice change. They all have been saying for years to remove the goiter because of the size even though there isn’t any cancer present (did all the tests) but I have chosen to monitor it with sonograms and leave it until now. I have some symptoms recently complicating my breathing and swallowing. I am at a crossroad and can't ignore this because I feel it in my throat now but because my TSH, T3 and T4 levels are normal I don't want to remove it. Not sure if I should remove the entire thyroid or half of it if I decide to have the surgery because there is no way of telling what will happen in the future. I am scared to change up my hormone levels with meds because I am also in Menopause. I am not on any meds for anything and feel great but my throat is tight now with the goiter being over 4 cm. I have another surgeon appt. and will have to make a decision within a few weeks. Anyone care to share their surgery story of partial or total removal of their thyroid with me? Anyone successful in shrinking a large goiter? Please feel free to advise. I really feel like I am dammed if I do and dammed if I don’t. Thanks.
Thank you for your response. My reports says it is a large complex nodule involving most of the left lobe measuring 4.2 x 1.9 x 2.9 and has not changed since prior studies done each year dating back from 2009. No other discrete thyroid nodules or intrathyroidal calcifications. Should I ask the ENT about PEI treatment? I need to look it up before I go to get a better understanding of what it is. Do you think based on that explaination it should be removed?
In my opinion - if you have hashimotos - have the whole thing taken out. You will probably need to have the rest of it removed at some point. I debated about having mine half taken out or whole. I had a sonogram done that showed the destruction and what was causing all my pain. Then i debated half or whole over and over......
then i went back to the dr. 3 months later my original debate started and she did another sonogram that showed more destruction on the "good side" so just in the 3 months it showed that there was even more destruction.
The surgery is painless for the most part, quick recovery. You might be able to balance easier with hormones with the whole thing gone as well instead of having the partially diseased thyroid battling with the hormone replacement. Good vs evil LOL
also fyi - there is another board that is specific to thyroid surgery if you have interest in interacting with others who went through what you (and i ) went through specific to your debate, shoot me a PM and ill send you over there to pick some brains.
If you do decide to have the left side removed, there is a good chance another goiter will form on the right side. It is a risk you take. In 2005 I had a very large goiter on the left side of my thyroid and had it removed. The surgeon decided to leave the healthy tissue on the right side since I was only 25 at the time. In 2009 nodules started forming on the right side. During the 4 years with only half of my thyroid, my TSH, T3 & T4 levels were fine. Up until this year we monitored the growth until it was too large and bothersome. It gave me discomfort and I waited as long as I could.
I am now 5 weeks 4 days in recovery from total thyroidectomy.
I have to say the first 3 weeks were rough as hell but I am feeling pretty normal now. I am on 100 mcg of Levothyroxine "Synthroid". I take it like clockwork every morning at 7am.
I have noticed some weight gain and dryer skin, but other than that I feel ok. Oh, on top of the surgery June 13, I had my right ovary removed due to a very large dermoid cyst - exactly 3 months before the thyroid surgery. My hormones were so out of whack!
Most of the life stories I have read on living without a thyroid have all been so negative. I was terrified. But I want you to know that it is not like that for everyone! There is hope of living a normal and happy life! It's all in your attitude & how well you take care of yourself! =)
God bless & I hope all goes well!
Thanks for sharing your story. I do not have hashimotos or anything else other than a gioter with my TSH, T3 and T4 levels being normal. I now have a very small nodule on my right vocal cord which is the real reason my voice is changing as per the ENT. Will see another doctor next week to discuss everything.
I have a similar situation as yourself. I found a lump 19 years ago and the specialist told me I should have it taken out. When I found out that I would be on medication for the rest of my life, I was more that hesitant. Every couple of years I have had it checked and all is normal but over the years, the Multinodular Goitre has grown and is now a similar size to yours. I also have normal Thyroid functions. I am interested to know what you decided at your appointment on the 7th August. I have had almost 20 good years since first being told to have it taken out (I have been told by numberours surgeons over the years the same thing) without medication but feeling that my time is coming closer. Good luck...
A goiter is a swollen, inflamed thyroid. A nodule is a growth on the thyroid.
While you will hear horror stories about thyroid removal, rest assured that having your thyroid removed is not really a whole lot different from those us, whose thyroids were destroyed by autoimmune disease.
Once the surgery is done, the most important thing is to find a doctor who will test and treat the resulting hypothyroidism, adequately, according to symptoms, not just labs.
Most nodules treated by PEI (ethanol injection therapy) are smaller than yours 2...2.5cm in diameter, but you still need to explore this option with the specialist who is familiar with procedure. Benign follicular nodules tend to grow in other side of thyroid, but most colloid nodules are removed only due to cosmetic reason or mechanical obstruction.
There are natural and safer ways to shrink goiters and nodules. Low Dose Naltrexone shrunk my nodules. The only time someone should have their thyroid removed is if it is cancerous, and then save as much as you can. Once you have it removed, there is no healing it, and you will be permanently hypothyroid with medication the rest of your life. I healed mine with help from the book "Hope For Hashimoto". Never make such an important decision without research and finding a doctor that can save it.
you sound very experienced in all this thyroid stuff., I have hashimottos/ hasitoxicosis., took me three opinions to get that plus me being my own investigatorin all this! I had a thyroid uptake scan , diagnosed with multi toxic hotspot nodule/goiters GRAVES.., I didn't agree at all went 100 miles to get another opinion just to go back to same ENDO office I began in but with the MD and not the PA who then agrees yes I have hashimottos thyroiditis he ended up just giving me the same treatment RAI December 17th but never tested my levels again b4 the the treatment to see where I was over a month after the wrong diagnosis of graves... ugh.., I kept telling these drs that I have and had symptoms of both for a very long time.., so confusing. I am only 30 but felt like I walked out of a prison cell sick irritable insomnia hot cold on and on and on...... should I just have them kill the rest of my thyroid like I wanted from the beginning???? DR swears I will eventually be normal thyroid but then ultimately go hypo so watch for signs... the radiologist swears what he gave me in those two capsules (RAI) will destroy whole thyroid gland and if not which is rare 6 months later another dose is appropriate to destroy it all..?? so one dr/PA has one set of percentages., another ENDO., MD has another set of percentages compared to the RADIOLIGISTS percentage rates of the RAI that I received WOW this is awfull but atleast I know im not mentally ill like I was misdiagnosed and wrongly medicated for over half my life so I am in a better place now than b4 but still way confused on how im going to feel one moment,hour day to the next...???
wow you seem very optimistic about all this thyroid stuff? I am still really confused I am 30 with a diagnosis of hashimottos thyroiditis / hashitoxicosis! I cant stand it never knowing how I am going to feel one moment or hour or day or month or year to the next now that ive had a thyroid uptake scan then RAI December 17th 2012 and looking over my whole life and not even knowing who I am, I was unfortunately misdiagnosed as mentally ill for over half my life to the point I will say I am allergic to all antidepressents antiphyscotics and mood stablizers except benzos., they all did nothing or made me worse!!! I guess it upsets me mostly cuz of my children they have had to suffer through all of this and still are they don't know me and the older ones just think drs don't know what they are doing and mommy will always be sick in some way or another.. =( I always tell them it will get better there has to be a reason I was lucky to catch it at age 30 still young lol.. most likely will have a hysterectomy within the next few months also so the hormone thing I get maybe or someday I will have a lot of experience with all this and can help others. its nice to see some optimistic=)
I have a similar thyroid problem to yours. My thyroid levels were normal
so I ignored the large glands. However last year I had a thryoid test and
the goiter was 3.3 and last month in the test is was 4.3 so it is getting larger and doctor thinks I should have it removed. I have trouble breathing at night sometimes and a choking sensation too. The surgeon wants to
remove the whole thyroid and then I would be on thyroid medicine for life which upsets me too. I am going to talk to my surgeon in a couple of weeks with lot sof questions. Mainly the necessity of removing the whole
thyoid - I believe it is because if you don't more goiters will grow on what
is left of thyroid.
I am going to ask also about weight gain and other problems. I am 64 now
and very healthy but I dont think i should wait ten more years when I might not be. I mainly don't want to have trouble breathing. the GOOD news is that this surgery is one of the less risky - only 2 % of people having this surgery have complications.
Let me know if you have any questions you might want me to ask and will let you know how my surgery goes. It takes 3 hours I am told and one night in the hospital. I am scared of having surgery AT ALL but i am also
sure that the growth will only get bigger and constrict my airway.more.
I'm reading your first letter (2012) and all the other comments. Its jan 2014, and I also have an enlarged thyroid on my left side and smaller nodules on right. I just wanted to find out how you've progressed and have you had thyroid surgery or still living with the goiter? I have no desire to take thyroid medication the rest of my life; I've also read that having thyroid removed can cause problems with vocal cords and I like to sing in a country band. I'd love to find a way to shrink goiter. My tests are in the normal range also (low end). I currently take a little lugols iodine each day and a raw thyroid capsule I order from Swansons but I think I'm just maintaining...nothings really shrinking. Have you found any solutions yet?
Thanks for all your replies. I have not done anything since the goiter has stayed the same size since 2008 with yearly tests to confirm. I don't have Hashimotos, Graves or any other disease and or issues at this time. All thyroid blood levels are still normal so unless something changes, I am just fine staying the way I am with an enlarged left lobe for now. I still do believe though that there is a way to shrink it naturally, just haven't figured that one out yet....
Yes, anything can happen with surgery and being so close to your vocal cords after its done can produce a raspy voice temporarily or permanently. You could loose your voice by not removing the nodules as well if they start to obstruct your air passage which will make it more difficult to breath. None of those situations has taken place for me so I have just stayed the course. I have chosen to continue to have scans and blood work to make sure nothing has changed since they found mine in 2008. That has so far worked for me but I am not opposed to changing my course of action if other things become present. Its all a personal choice based on advise from medical professionals and more importantly being your own health advocate!
The right lobe of the thyroid measures 4.1x1.2x1.4 cm and the left lobe measures 4.2x1.3x1.4 cm. the isthmus is not thickened at about 2mm. there is a 6x3x5mm partially calcified nodule at the junction of the rt lobe and isthmus. there is also a 4mm hopeochoic nodule posteriorly at the mid the inferior aspect of the rt lobe. On the left side there is cystaic nodule measuring about 10x6x8mm . this contains some internal echoes including a round 1-2mm projection in the nondependent portion. there is no increased vascularity. can someone tell me whats going on
Hi, my advice is to get it all removed! I had mine removed 4 days ago,after living with an enlarged thyroid for 30 years. As it worked perfectly I was reluctant to have it removed and put it off for as long as I could. I had begun to suffer from a croaky voice and trouble breathing and swallowing. I hen got Pains in my neck which the physio couldn't sort, which eventually lead to a mri scan. This showed the thyroid gland was pressing on my carotid artery and wrapped around my wind pipe. I eventually plucked up the courage to go ahead with the surgery. When the surgeon operated he discovered that it had also grown behind my sternum On both sides and weighed 288 grms. The operation took 3 1/2 hours!! He had done a fantastic job and my scar is already healing well and I am sure it will be hardly noticeable. Apart from being a little tired I feel absolutely fine and can already breath and swallow better. I am a little apprehensive about having to have medication, however I can't stop looking at my profile , it is lovely to have nice slim neck and to be able to swallow properly. Take the plunge I am so glad I have
Thank you for all your comments and shared experiences. I still have my goiter and completed my regular tests again this year 2014 with no growth or change. I feel great, have a lot of energy and can breath fine. A little over a year ago I had a very small nodule on my vocal cord which made my voice a bit raspy. I thought it might be the goiter compressing but it wasn't so I did nothing beyond vocal rest and it went away. My voice is fine, throat and breathing still good. So after seeing 5 endocrinologists both in FL and NY, I will leave you with the advice of the only endocrinologist from NYU Cancer Center that made any sense to me based on my specific situation which is a bit different than most of everyone's response posted.... Unless the goiter is cancer, obstructing your air passage, been diagnosed with a disease like Graves etc. or continually growing based on yearly tests results.....it's ok to leave it alone as it is still functioning and supplying the body with the right amount of hormones especially since I am also in menopause. I feel blessed that my thyroid isn't complicating anything because that in itself can cause issues which right now I don't have. Of course I would choose a different path if my situation changes but so far my goiter is not affecting me on any level. This is a very personal decision for each person to do what they think is best with the knowledge they have been given. I do a lot of research for a living, have seen many doctors with all but one advising removal just in case. I realize doctors want to release liability by recommending removal but I am my own health advocate and look at my choices based on my overall lifestyle and health while respecting the advice of specialists. Ultimately, I am making my own decisions and thus far its been all good. God Bless everyone and good luck on your own journeys....
I had a partial removal when I was 24 and have not been on meds,My other half was working fine for both sides,I am now 44 and have 2 goiters on the remaining half,for now the dr has put me on synthroid which seems to be making me gain wait,but my point is I have done fine for 20 years with half a thyroid and no meds.
Thanks for sharing your experience. Often times people go decades without incidence and then things change. I am happy to hear you were not on meds for all that time but now unfortunately with the newest growths have to change that course of direction. I believe the main reason I am keeping both sides of my thyroid, the one with the goiter on most of the left lobe and the other entirely normal is for what eventually happens with most people who have partial removal. As mentioned everyone experience is different and I know the time element is also different for each of us to sustain our thyroid health. Taking meds usually brings on other things as there are side effects to most. I feel for you with the weight gain as it only adds to the challenges as we get older to stay fit. I am 53 and think my goiter was probably dormant for many years prior to it being noticed in 2008 so I could have lived with it for decades without knowing. As long as it stays the same and isn't getting bigger or turning into something else, I am happy to leave things be. Good luck with your situation.
How are you doing, now that it has been almost a year. I'm having the same systems that you had but I also am extremely tired all the time and my hair is falling out also. I have been told that it's up to me and I don't know what to do. Just wondering how you are doing now and are all of the systems gone. How do you feel?
This is a very old thread and Hurricaneh hasn't posted since last year, so we don't know how he turned out.
Your symptoms sound as though you have hypothyroidism... Are you currently taking a thyroid hormone replacement medication? If so, that often helps to shrink a goiter, which apparently, you have and no surgery is necessary.
I don't hear anyone talking about the possible underlying causes. Some books I have read say to consider gluten intolerance, adrenal fatigue, and leaky gut syndrome. Since I have Hashimoto's, I am currently following a paleo diet and taking supplements to repair my gut (entire digestive tract). The idea is to relieve your body of all inflammation and return to balance. There is such a thing as "remission" (no antibodies) in Hashimoto's disease, so that is what I am doing. I will retest TSH, antibodies, and thyroid sonogram in 6-8 months and let you know if there is any change in my base results.
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