Looking for advice and will start at the begininng…..I found a lump around a year ago in my neck however I was pregnant a the time. I had ultrasounds and fna biopsy’a done and never really got an answer
My daughter has been born now and I most recently had another ultrasound and fna biopsy apparently my ultrasound has been rated as a U3 however my fna was said to be thy4, they recommended I go for a PT.
I am absolutely terrified, if I could I wouldn’t have it removed however they have said if its cancer it can spread and my partner wants me to have the operation as he doesn’t want to loose me.
I have joined groups on Facebook and these have made my fears worse…the symptoms they experience, no energy, hair loss, weight gain, racing heart, depression, fatigue, insomina the list goes on….
Will I end up medicated? Or will my remaining side do the job for both? Will I ever get my levels right? Will I feel normal or like I do currently? I am so frightened my quality of life will be effected and having three children and a house to run I don’t have time to be poorly.
Please post your stories/advice.
Thank you x x
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Aqua_Maria
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Hi, I had a partial done due to a nodule, and unfortunately mine did come back as papillary thyroid cancer, so I then had the other half removed to complete a TT. Life is manageable, yes it can be tiresome at times, but I am here and cancer free after 10 years. Good luck
I don’t know why I just have this awful feeling that my life will be completely different if I have half of my thyroid out. I suppose it’s from reading peoples experience’s and I know they are positive cases and those are not on social media. Thank you.’
40 years ago I was exactly the same. After giving birth to my daughter my neck became very swollen and I was told I had to have a PT. As it happens I went on to have a life with no other symptoms whatsoever. I was put on carbimazole for approximately 3 years then weaned off it around 9 months after my thyroid op. Then 7 years ago I started having palpitations, anxiety etc and they found that I had multiple nodules. I was again started on carbimazole but they couldn’t get my meds right, too much I was hypo and too little I went hyper, so I had aspiration, scans, only to find that I had more nodules. I then had to have another partial but again carbimazole didn’t sort it, so I was offered RAI, which took me almost a year to decide upon. I honestly don’t know if I made the right decision but I was told that there was a very good chance that I could end up with thyroid cancer and I didn’t want to take the risk. Unfortunately only you can make that decision, good luck with whatever you decide to do. There’s lots of good advice on here.
I think it’s only natural to be wary of having a glad necessary for life hacked about. You have to weigh up possible outcomes. At least mine just atrophied so I didn’t have any decisions to make like having operations, it did it all that for me. And I didn’t have any cancer in it like the other relatives.
A close relative had NHL primary lymphoma and had a total thyroidectomy. The op was successful and she has been fine on Levothyroxine for 30 years, since the op. So the outcome can be positive for some. Another close relative had the same cancer but would not see a doctor (had a huge goitre hidden under polo neck tops) because she was terrified of having a thyroid operation so went into denial. For some unknown reason she did eventually see a doctor, by this juncture it had got so bad she could hardly breath and the goitre was so massive it was inoperable, she was given emergency chemotherapy in desperation to save her life and miraculously it shrunk the goitre/tumour by half very rapidly. She survived the chemo - after a huge battle and endless blood transfusions and had 8 years quality life before it came back again and only palliative care was possible. She also felt very well on Levothyroxine. I had different problems and my thyroid shrivelled away so it had no function but I never felt well on Levothyroxine. Thankfully, I now feel very well on NDT. So even in families things can be quite different with thyroid disorders and treatment responses. I hope you are able to come to a decision about what is best for you to do after hearing these and other experiences. ☘️🍀☘️
If you have only half removed and if ends up being cancer then you will get the full thyroidectomy…. Im not going to Lie its not all sunshine and rainbows losing your thyroid and it’s actually made worse by lousy doctors treatment or lack of treatment afterwards and yes some people gain weight and some people don’t and that’s really a guessing act because no 2 people are a like and yup some people do lose hair but some don’t (I did not).
Im a firm believer in getting a second or third opinion before you commit to a partial or full thyroidectomy and definitely get a complete thyroid panel prior to your surgery.
Thank you for your comment, I haven’t actually had a yes its cancer or no its not. Its always come back as inconclusive and they are saying some of the cells seem suspicious but thats about it. My nodule has also changed so now its more fluid filled however the size has stayed the same over the past year.
Where would I get a second opinion as its all been done by the NHS. Should I request a CT or MRI scan?
I had partial thyroidectomy 3 months ago for the same reasons you are considering it. I had a FNA and it came back suspicious for cancer. It was a large nodule that I have had for over 20 years. Previous FNAs had indicated benign. The operation went well and it was benign. I had three opinions beforehand and all three felt it was not worth the risk to leave it in.
After the surgery, I had a really rough 4 or 5 weeks with extreme mood swings, terrible nausea and fatigue. Also my white blood cells were high. The TSH was 7.6.
Now after 6 weeks on Levo, my TSH is 2.2 and I am back to exercising and pretty much normal life. I cannot say whether or not it was the right decision but I can't look back now, I have chosen to move forward and I keep reading this blog because they give wonderful advice and support. Also, I have gained weight but hope it is just temporary.
Please seek a second and third opinion and ask if you can wait awhile. If it isn't growing, perhaps you have some time to weigh the pros and cons.
Where would I seek a second and or a third opinion? I doubt they will repeat a FNA as this was my 3rd one and they say after that if no answer is found then they just remove! So cannot seek an answer this way.
It hasn’t grown for over a year now not sure how long its been there as it was only noticeable by me last year you cannot see the nodule it isn’t sticking out at all.
I know cancer is slow growing so time is essentially on my hands, it has no symptoms at all I cannot feel it when I eat or breathe and it doesn’t effect me in anyway its my acid that is bothersome and causes me all the issues.
I had half of my thyroid removed a decade ago because of a benign nodule. Except for a little fatigue during the 6 week period before they can start thyroxine I have literally felt NO symptoms. My primary had me take both NP Thyroid and Tirosint from the beginning but I have reduced my NP Thyroid over time with no apparent effects. I am very active at age 70 and my weight is stable. Just get a good endocrinologist and you should be fine.
Thank you for sharing your story, may I ask what NP is I haven’t got an endocrinologist no one has put in a referral for me?! Is this something I should be asking for and what does an endocrinologist do?
NP = NP Thyroid = A brand of desiccated thyroid medicine from a USA company called Acella.
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
I am not in the U.K. so not sure where you would go for second opinion, sorry. It is a good idea to go to Endo and to Thyroid surgeon for second and third opinion. What is the size of the nodule? Sometimes the size is a determining factor. I based my decision thinking about how I would feel if it was cancer and ignored it. Also, I am over 70 and didn't want to wait until I was older to have the surgery since the recovery could be much rougher.
I am in my 30’s and have a new baby plus two other children so would hate to feel fatigued from only having 1 thyroid. The nodule is not noticeable at all and I think its 3cm by 4cm I don’t have any of the reports my ENT consultant has them all and he is now retiring! I don’t have an endo is this someone I should be asking to be referred to and what would they do?
Six years ago I had a partial thyroidectomy I was worried like you but it wasn’t as bad as I thought, I had a huge nodule thought to be cancer but it turned out to be be benign, I was back at work after one week and my levels were normal. Unfortunately I went to have a full removal due to a very small cancerous nodule that appeared on the opposite size 6 months later. I have a couple of issues that I didn't have before but I’m still here and there are plenty of us living without a thyroid. Take one step at a time. Ask the consultant to explain things clearly to you, mine drew lots of pictures for me.
I agree that lots of doctors really have a problem understanding Thyroid issues, I will only see one doctor at my surgery now.
Thank you for sharing your story, they graded my nodule as a cyst and then all of a sudden said it looked suspicious with my last fna and they have advised I have a PT. Its always “sat on the fence” so has never come back as benign or cancerous! I am just so scared that my quality of life will be so much different and that I will be too, its a vital part of the body and one I would rather keep. Its a hard decision to make as I won’t know if my other side picks up the slack or not until I have the surgery I was hoping they could offer different treatment options instead of removal its all very terrifying.
I have the same thing you have. 4 cm nodule and no symptoms. My report said it’s suspiciously cancerous and said I should do full removal of thyroid. Im not okay with removing it. I have a second opinion next week. Im going to find out more options first.
My most recent fna came back as a thy4 and cancer is thy5 so they are recommending I remove half which I am also not 100% happy with my partner is pushing for partial as he doesn’t want me to leave it with the possibility of it being cancerous. I wish there were different options to treat the nodule instead of removal.
I’m in United States so they go by a statistic system. I have a 40-60% chance of cancer and my biopsy said I’m genetically carrying the cancer dna for thyroid cancer. I have a new doctor on Monday next week who should be able to tell me what kind of cancer. There are 4 types of cancer. The anaplastic one is the worse one that spreads. The problem with these doctors is after partial removal they want the whole thing removed also out of only caution. I get it but there is a chance of it being benign. I also heard of ethanol ablation. I’ll update you on my visit. I’m also worried as well but since we both don’t have any major symptoms we have time to think. Did the doctor tell you what kind of cancer you have ?
I am in the UK and I was pregnant when I found my thyroid lump they first said I had a 17% chance of it being cancer so they decided to offer me monthly scans to monitor growth and any changes which I had none.
What they tend to do here is do 3 fna’s and if its still inconclusive then they get you in for surgery!
Mine hasn’t come back as cancer they cannot get a definite answer from the ultrasound scans and biopsy’s they have done. They say the only way to know if it is cancer is to do a partial so it can then be examined properly.
Whats ethanol ablation? I have heard of a treatment called radio frequency ablation but only certain hospitals offer it in the UK and mine or any nearby have never heard of it and apparently this treatment is only for benign nodules however it means surgery isn’t needed as it can shrink the nodule upto 80%.
Ethanol is alcohol injection to shrink the nodule. I think it works like radiofrequency ablation except it uses alcohol. It works on smaller cancer nodules and benign. I got a cytology report along with biopsy and both say I have a cancer mutation that requires surgery. My report also said something about it being inconclusive. It’s really annoying when they aren’t sure but they want to remove the thyroid to be cautious. They neglect how we will feel afterwards.
I asked about RFA before I had my third fna and my ENT said he had never heard of it and I mentioned about a referral for one however he said to wait for the result of my third fna. He has now retired so a different ent will perform the surgery and I am awaiting the thyroid nurse to be back to ask more questions about all of this before I commit. Thats what I am so scared of I know people are lucky and the other half picks up but what about those that don’t!
I’m the same as you. Just waiting to decide on what to do. Leaving it there might cause it to be bigger or could be cancerous. Taking half of it off we might be stuck on meds or have side effects to live with. I’ll update you on Monday when I see an otolaryngologist. They are like a special ent with surgical experience. All this worrying lately made me lose 5 pounds.
Its not an easy decision to make at all. Good luck on Monday and yes please let me know we have none of those doctors over here the only doctor I have seen about this all is an ent consultant who also performs the surgery!
The new ent pretty much repeated what other were saying in that I should have it removed at least half. I told him I wanted to see the radio frequency ablation doctor to see if I’m a candidate for it. So waiting for an appointment for that. My insurance requires approval to move forward. He said most likely I have papillary carcinoma which is the common cancer. It’s a weak mutation at the moment. I hear a lot of people who are fine after surgery though and a few that are not. Idk..lots of thinking lately.
Thank you for posting your update for me. Hope all goes well with the radio frequency ablation appointment and hopefully you are a candidate for it. There will never be positive posts about a partial removal on google or social media as those that are fine will basically have nothing to moan about thats why we hear and read all the negatives instead which are very scary. I too will have lots of thinking to do. I am thinking if I HAVE to have it removed I will wait until my baby is a year old as I won’t have to arrange for her to come into the hospital with me as I breastfeed her exclusively. Good luck and please post back any updates.
Hello,I see that this post is 6 months old. I am in a very similar position as you and was wondering if you finally had another opinion or decided to go for the partial thyroidectomy ?
Hi Aurelie, I have refused surgery as I don’t want to have my thyroid removed and risk being on medication for the rest of my life. I am going to Germany for RFA treatment instead which shrinks the nodule leaving my thyroid intact. They do it here but only in London and also only on benign nodules with a thy1 or thy2 biopsy result. Good luck on your journey and please make yourself very well informed before having the surgery as the thyroid gland is a very important organ.
hello Acqua Maria, many thanks for your reply! I will look into it but at the moment the nodule is not really bothering so not sure if RFA would be helpful (yet).
RFA would shrink your nodule and stop it growing so it can be done at any stage it’s best to do it earlier before it does start to cause any issues such as compression, difficulty swallowing etc. Also larger nodules may need a second or even third round of RFA where a small nodule may only take one.
Hi! Would love to know how is it going for you now? Have you gone trough the RFA treatment yet?
I have a 6x3x5cm nodule on my left side, that has been growing constantly (and is causing a lot of tightness/pain and difficulties in swallowing). So I finally decided to go for the partial thyroidectomy (in two weeks). My doctor didn't recommend RFA because my nodule showed a tendency to grow, so the result of the operation would only be temporary. As another less invasive treatment, I've also read about intrathyroid injection of steroid.
Hi its going great I can’t feel the nodule anymore when I swallow I still need an ultrasound scan to see if it has shrunk but I think it has as I can feel it has.
Yes I had the RFA treatment. If your unsure about your decision about the surgery I would suggest joining this group on Facebook its called “Save your Thyroid non-surgical procedures” this is the group that informed me of RFA and provided me with there own experiences this is how I found my RFA doctor in Germany. Good luck.
Thank you. I'm definitely unsure about what to do. Both prodecures have some risks. Like in both, there's a risk of laryngeal nerve injury. There's not much data how well people who have gone through RFA have maintained their voice. But obviously keeping your thyroid (in case it's healthy) is a huge benefit for RFA/EA.
RFA is very low risk if you join the group you will become more educated about the different procedures as they are not very well known unfortunately and it may help you make a decision. To be honest I only read of one patient who suffered temporary voice problems after RFA so its very rare that RFA will affect the voice at all. I would choose RFA every time over surgery as that comes with whole load of problems and many many side effects plus being medicated for life and getting the dosage right is a big problem a lot of people face here in the UK after a partial removal.
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Bloods Post Partial Thyroidectomy
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Partial thyroidectomy
