Thyroidectomy advice

Met with surgeon who has recommended surgery for 3.5cm nodule on my thyroid. Been having difficulty swallowing and constant feeling of pressure in my throat. My blood results are euthyroid despite suffering hypothyroid symptoms. I'm nervous about having surgery. If I feel rubbish now with normal thyroid function am I going to feel so much worse when my thyroid is removed? I've read so many posts from others relating to horrid side effects of Levo and feeling unwell etc. I really don't know what to do for the best :(

37 Replies

  • Faith63 just because a lot of people having problems. Doesn't mean you will. Life is trying to find a balance.Xxx

  • you only have 1 thyroid, why risk it? Drs do not know how to treat thyroid issues..just pills and surgeries. Why not find the cause of the nodule and heal that? It is doable. I wish i knew that long ago.

  • Faith63! I didn't have a choice. i was one of the ones that lost it because of cancer and then had to have the second part removed for the same reason. So I've been there and seen what I've been to throw the same opp twice witch Betty 41 might have to go throw yet or not. The worst thing i was told that I've got to told was I've had to tablets for the rest of my life now. It's not easy one bit. And the research is trying to make it better for everyone. Maybe someday there will be treatment that can be found. For thyroid problem. Let's hope so. But scaring people not to have an opp is wrong if it's saves there life in the long run.xx

  • There ARE natural cures for cancer and thyroid , through functional medicine..

  • im just saying..don't be a lemming and seek alternatives. Big pharma and doctors are making way too much money off of us, by making us ill in the first place, with drugs and pesticide laden food and least in the US, they are.

  • Oh your in the USA. I come from United Kingdom. But it doesn't matter but the opp are all same.xx

  • in the us, the doctors are very really pays to do lots of surgery's and prescribe lots of drugs.

  • Faith63,

    So how does one heal a 3.5cm nodule that is causing swallowing difficulties and discomfort?

  • It would depend on what is causing it. Levo can shrink them and t3 can too and fast..then find out why and save the thyroid and other organs/glands.

    I believe she may have mentioned that she had cancer already elsewhere, so getting help with finding why, seems hugely important.

  • Faith63,

    Thyroid meds sometimes shrink the nodule but don't usually shrink it to nothing. I can assure you that if meds made nodules disappear NHS would find it cheaper than surgery and medication would take preference over surgery. If a large nodule is compressing or deviating the trachea surgery is required.

  • it depends on whats causing the nodules..of course if someone is choking, surgery would be the way to go. In the US, they would do surgery before anything, due to profits.

  • Faith63,

    NHS treatment is free at the point of use so there's no danger that patients are being persuaded to have surgery to profit doctors.

  • There is a reason for why your surgeon said that your thyroid has to be removed. To help you eat again. They might only be taking half of it away. And you could still lead a normally life. Without being independent on tablets. It depends on what kind of opp your going to have to do.

    I've had two opp for having a thyroid been removed all down to cancer. The opp's wasn't the hardest thing. And been put in a room for 4 days all on my own. It was after to being told at 38 years old and being independent in tablets for the rest of my life. Now I have to take 3 tablets a day because of it.

    There is nothice wrong with the surgy you will just go to sleep and wake back up. You will be alright.. Xx

  • Betty please don't let the few scare stories on here worry you, the are many many 1000's of people on Levo who are doing well and getting on with life. Do what is right for you, hope it goes well, you will be fine.

  • Just because your TSH is "normal" doesn't mean you don't have a problem or don't need medication if you have symptoms. The people here are the ones with problems not everyone has them. I was on levothyroxine for 18 years with no problems until it stopped working for me.

  • rouser,

    mist dog I'm in a similar situation where after reasonable strength after TT and levo's dependent for decades, I simply ceased being able to metabolize synthetic thyroid meds. I'm in the beginning stage of working out proper amount of NDT's to make me functional again. My body seems to be able to process them, but I hope to gradually increase the dose. Do you know why synthetic meds stopped working for you?

  • I think it was partly hormonal, partly moving to somewhere different/stress/getting a doctor who didn't understand and tried to reduce my levo and then I couldn't get it back up, got cancer, don't know if this is related, but suspect it may be, tamoxifen messing with hormones, maybe blocking uptake of thyroid meds, perm any one from 10!

    I don't know.

  • rouser,

    thank you for the reply. You've really been through the grinder! My precipitating factor seems to have been hemochromatosis (genetic origin)(iron overloading) which studies show is more prevalent in UK region of the world, overall relevant in 1 in every 200 persons. only available way to contend with it is phlebotomizing. Once my ferritin level was brought from 900 to under 30..the phlebotomizing was stopped and so was my ability to metabolize synthetic thyroid meds. This site was what made me put together that my severe hypo symptoms might be related to the low ferritin level. Anyway, I'm new to the site and agree with you all who say it's a lifesaver ((practically and humanistically). I realize this site is directly suited for help with thyroid related problems...but just hope that this alert about hemochromatosis is worth your time to hear about because it's another one of those easily tested for but greatly missed hidden killers. If I'd seen this site earlier I would have refused phlebotomizing that would take me under 80. Now I'm carefully working on raising my ferritin level to that number.

  • Yes indeed, when anything is out of balance in the body it has a knock on effect. There is a known link between being hypothyroid and on levothyroxine and breast cancer, risk is increased 200% due to iodine imbalance.

  • just my opinion, do what you want..

    you only have 1 thyroid, once gone and the meds don't work and doctors don't help, you can never go back. Where i am from, there is real profit to be made from surgeries and my doctors have lived a nice life because of all my unnecessary ones. Who is looking into natural means or why this is happening? I would see a functional or integrative doctor, to address WHY things are going crazy with your body. Hashimotos causes nodules and so does diet issues. all correctable, without surgery. .

  • Faith of course you are untitled to your own opinions but it's not helpful to tell everyone that a change of diet will cure everything, it won't. This universal mistrust of all conventional treatment is also unhelpful, many of us are doing very well having had surgery, RAI and many years on Levo. Feel free to bang your drum but maybe a little more softly 😁

  • I've been bed ridden for 3 years after my thyroid op, am in my 30s and was very healthy and active, and I may never return to work. I agree that I've been unlucky and some are much luckier, but it's not true to say there is no risk. Going in for the op is a roll of the dice, and you can never take it back. If there are ways to avoid losing a vital organ, follow them up!

  • Nobody said there was no risk, nothing is without risk, I have just been for a steroid injection which carries scary risks but the likelihood of any problems is miniscule in the grand scheme of things and if it helps then I'm happy to take the risks. Obviously you have been unlucky but the vast majority of people will have 0 problems with either the surgery or any treatment needed afterwards.

  • Oh my goodness, Bantam, you are obviously not superstitious to speak so coldly to someone who has suffered enormously ;)

    I would love to know where you get your data about probabilities from, and I think it would greatly help the OP to make their decision.

    Good luck!

  • Sorry but I don't understand what you are talking about, superstitious, cold ??

  • rouser

    what help has been given to aid you in Reba lancing your system since TT? What explains you're being bedridden?

  • Unfortunately very little help. My Endo doesn't know how to read a thyroid panel. So I had to come to ThyroidUK and learn myself. I now totally self medicate and pay for my own blood tests.

  • Bedridden fron having my thyroid removed. Even half was enough to make me extremely hypothyroid. The conventional treatment was never good enough to get me out of bed for more than maybe an hour or two on the sofa.

  • The thing with you know what is that it's a very non-dangerous form. Whereas having only half, or no thyroid at all, is also dangerous.

    In my experience the conventional medical approach is to push additional treatment and removal of thyroid (you will always lose half or the whole thyroid when modules are removed). If you aren't being pushed to have these treatment, the likelihood is these are very benign.

  • Betty41,

    When my 2.8cm nodule was removed it was a tremendous relief to be able to breath and swallow freely. Only the side of the thyroid which had the nodule was removed. The remaining thyroid gland is expected to produce sufficient hormone. It doesn't always, of course, and if that is the case you will be prescribed Levothyroxine. 85% of patients do well on Levothyroxine. If you don't there are alternatives although you may not be able to have them prescribed on NHS.

  • Hi Betty, my story was similar to yours but I had 4 nodules. The largest was 3.8 cm and the others ranging from 2 cm to 2.8 cm. They were on both sides. I tried everything to avoid surgery as I was terrified of all the negativity and scaremongering. The reality with nodules this size is that they are not going to reduce in size and if you are recommended surgery I would not heed this advice. Just be sure that you get a very good and experienced surgeon, not a general one. I take natural therapies as well and do very well on them, but nothing reduced my nodules, sadly.

    Its not strictly true that meds dont work for everyone, I am on NDT naturethroid and am feeling great, thats less than 8 weeks after my TT!

  • Hi,I have had a Thyroidectomy 32 years ago.

    I had multiple nodules and my thyroid gland in parts had out grown its own blood supply.

    On a scan it looked like a map of the Caribbean islands.

    Surgeon recommended removal,as small risk of the tissue turning cancerous.

    I went with the recommendation had no problems with the op at all.

    I am now on 150 mcg of Thyroxine,had to start taking a small dose a few months after op.

    I was glad to take it as I felt dreadful without.

    My mother had a partial Thyroidectomy at 27 and never need thyroxine until after the menopause.

    Please don't worry.

    There are many of us on thyroxine without problems.

    Just remember most people post on here because sadly they are having problems,many thousands of others are fine.

    Hope this helps x

  • Betty, first you need to get a Fine Needle Analysis (FNA) to determine if the nodule is cancerous. You will then have more than two options. If it is not cancerous I would leave it alone. If it is cancerous then you can have a thyroidectomy or go for one of the newer cancer fighting procedures (which are very, very new). If it is cancerous but only on one lobe, you might want to think about a hemidectomy (sp) i.e.only take half of it out - if you go the surgical route. But before you worry about any solution, get the FNA to see if it is cancerous.

    I had a total thyroidectomy 10 years ago because I had three cancerous nodules and one was right in the center, so it all had to come out. At that time I didn't know about the new methods of defeating cancer - the one where you inject a different disease to stimulate the immune system, which then goes on to fight the cancer in it's vicinity. I met a man just a couple of weeks ago who had successfully undergone such treatment for his bladder cancer - and it had worked! Anyway, good luck and get that FNA.

  • my point is that you should find out why your body has gone haywire, because it will effect other organs later..i just don't see things the same way after this horrible experience.

  • Wow! Thanks for all the replies. My head is spinning at the moment. I've had two FNA's now and both were clear of cancer which is really good news. The nodule is straddling both sides of my thyroid and after numerous scans I've been advised it won't be possible to save any of my thyroid so the whole thing will be removed. I have no idea what has caused the nodule. I have had blood tests including T3/T4 / Hashi and all came back as within normal ranges.

    I have suffered hypo symptoms for a long time but every doc I've seen dismisses them and state it's not my thyroid because my bloods are ok. I asked about medication but was advised it will not shrink a nodule this large.

    I seem to have constant acid reflux and after a lot of research I'm convinced I have low stomach acid but all doc wants to do is put me on proton pump inhibitors. I'm just fed up with feeling rubbish and just want some reassurance that surgery will help with at least some of my problems :(

  • It sounds like you probably have an underactive thyroid and are hypothyroid. Often doctors won't diagnose this until the blood tests have got extremely bad. Being within range means nothing, it's where you are within the range that's important. Most people will only feel well within a very narrow portion of the range.

    If you post your own results in a new thread members will comment.

  • Have you had your thyroid auto-antibody test done? Many endos don't bother because they think it's the same treatment-it's not!!!!!!! It was a naturopath who found my Hashimoto's thru a blood test. Mine is caused by infection overload-so we bring that down through treatments and your body eventually slows down and/or stops attacking itself...most of my bacteria is caused by my numerous root canals (7) and wisdom tooth cavitations from being improperly removed...tons of bacteria but I don't feel it! So I also go to a biological dentist to have that all cleaned out-not fun but better than thyroid surgery ANY DAY which won't fix the problem anyway if you have Hashimoto's!! Good luck!

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