Thyroid removal

I have had a fine needle test X2 done on some nodules I have attached to the gland and they show extra and some deformed cells. I have been asked to attend my local hospital as urgent case to remove my thyroid gland. My TSH test shows normal but I really feel so very tired and weak. Question: is there any other option apart from straight to surgery as this seems so very drastic as the loss of this gland can be so damming.

I have 3 brothers and a sister of which 2 of them have had their thyroids removed due to large goitres, I don't have any swelling but am in some pain after the needle tests. I really need your help as the surgery is due early April


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17 Replies

  • I would ask for a second opinion straight away. You may be able to "watch and wait" rather than go straight for surgery. I did this for 9 years before having it removed. Also look into having only part of the thyroid removed rather than all of it. Sorry I don't know any more but you are definitely entititled to a second opinion. Good luck with it all.

  • I've literally just come from hospital an hour ago having had half my thyroid removed but I just had one nodule. They say it'll be 2 weeks before I know whether the nodule is benign. Could you ask for a similar procedure? If your ultrasound shows the nodules are widespread, I can understand why they might want to remove the complete thyroid but I share your concern about this procedure. Good luck to you.

  • Discovery,

    Make sure you drink plenty of fluids and get plenty of rest. I hope you recover well and the nodule is benign.

  • Thanks, Clutter. Everything went really well and my hospital's latest technique is not to insert a drain so I slept well and came home within the 24 hours. Waiting for the results is the hardest part, isn't it? My husband is brilliant as a convalescence nurse so I'll be spoilt rotten for a bit!

  • I slept well with a drain, but I hadn't slept the night before surgery in both cases. Christmas and NY delayed my results so I waited about 4 weeks. I wasn't really anxious because I didn't believe it would be positive, so it was a bit of a blow when I got the result.

    Lucky you with your hubby to look after you. Make the most of it.

  • Hi there Clutter, I have just had the results of the test on the removed 1/2 of the gland and sadly I need the other 1/2 removed, the surgeon says ASAP as it has Papillory cancer present but I said I needed to recover from the last procedure so he is leaving it for 2 - 3 weeks. I also need to get over the shock of loosing it completely, thinking about what is in store for me in the future. kind regards Walke40.

  • Hi Martin,

    I'm sorry about the result :( It's quite a shock to be told you have cancer but thyroid cancer is the easiest to treat and survival rates for papillary thyCa are pretty much the same as for the rest of the population.

    My completion thyroidectomy was 3 months to the day after the hemithyroidectomy and my parathyroids were unscathed. The original scar was opened and extended by a couple of millimetres. Scar is almost invisible. I don't think anyone other than a doctor has ever noticed it.

    in your post below you mention feeling very tired. Are you on any thyroid replacement? I wasn't and I think I probably needed it but I haven't got my hospital records yet so don't know what my TSH, FT4 and FT3 were. I was scheduled for RAI after completion due to Hurthle cell carcinoma being an aggressive follicular variant, the size of the tumour and my age. Guidelines have changed recently and RAI is no longer automatically recommended for small pap thyCa tumours, again depending on age too. I don't regret having RAI but I may have a slightly impaired salivary gland as I experience night time mouth dryness and there is an increased risk of developing leukaemia.

    The morning after completion I was started on Liothyronine (T3) because RAI was 2 months away. If RAI isn't scheduled you'll be started on Levothyroxine. It may be quite a high dose as they will want your TSH suppressed <0.1 to reduce the risk of recurrence. Thyroidless people don't suffer with the undermedication that many hypoT patients do but we don't always do well without the addition of T3. You may want to discuss this with your surgeon or endocrinologist. Make sure to ask for printouts with ref ranges of all your blood tests for your own records.

    Martin, something you can do now, or just after your completion surgery, is to find out your ferritin, vitamin D, B12 and folate levels. When there is nitrous oxide in general anaesthetic it can strip most of the B12 from us. We really need these high in range to aid recovery and feel well. Many symptoms ascribed to hypoT symptoms can be due to low vitamin levels.

    I hope everything goes well. Contact me anytime if you want to talk through anything.

  • Hi there Mumtoboy, After been pestered by my wife and others including my surgeons secretary on the urgency to remover my thyroid and after another appointment with my surgeon I agreed to have ½ of it removed which was carried out midday on the 25yh April (sorry) 14. It went very well I think as I was discharged from hospital the next morning. I have felt no ill effects from the surgery it is healing very well, I must say a great surgeon. But over this last week I feel as though I have not the energy to get about, so very weak, I thought I was tired before but now standing is an effort, can anyone say this will get better or it it now I need the thyroxin to assist in my well being?

    Hi there, back again

    I went to an appointment with my thyroid surgeon this morning 21-05-14 regarding the lab results from the removed ½ of my thyroid and the bad news for me is cancer is present in all of the tissue samples so I have to have the other ½ removed to make sure of getting it all but he will do his best to keep the 4 small glands that dish out the calcium and other stuff? that my body needs to keep me well.

    A bit of a shock as I have never felt any ill effects from this problem apart from the feeling of exhaustion most of the time.

    So it looks like in for a penny in for a pound and 6 weeks I will be thyroid-less and travelling down the same road as countless others looking for the mix that gives us back our health.

  • Martin, the pain from the FNA is due to bruising and will go after a couple of days. FNA results are usually expressed as (1) insufficient cells to diagnose; (2) benign; (3) inconclusive, likely benign; (4) inconclusive, likely not benign; and (5) not benign.

    If your results fall into (3) or (4) it means that suspicious cells have been detected and the only way of being sure is to remove the thyroid to biopsy the nodule/tumour. If your result was (5) then cancer cells have been detected and surgery is the only recommended option as chemotherapy doesn't work well.

    Not having surgery risks the spread of cancer outside of the thyroid gland into the lymph nodes and blood and metastasis throughout the body.

    However, you should not agree to surgery without knowing more about your abnormal and deformed cells. What do they suspect? Are both lobes of the thyroid glad affected? If only one lobe is affected can a hemilobectomy be performed and the unaffected lobe left until histology confirms diagnosis on the affected lobe? Contact your specialist via his/her secretary and ask for an appointment to discuss your concerns and alternative options and referral to a MacMillan nurse.

    If you have autoimmune thyroiditis (Hashimoto's) in addition to abnormal cells, this will continue to attack your remaining thyroid lobe until it is rendered ineffective over time. You may wish to bear this in mind when considering a hemilobectomy (if appropriate) or complete thyroidectomy.

    I had FNA3 (inconclusive) in July 2011 and the lobe was removed to relieve compression on my windpipe in Dec 2011. The tumour had grown during the 4.5 month wait and was positive for Stage II Hurthle Cell carcinoma but it remained encapsulated in the thyroid gland and had not spread to the lymph nodes. Completion thyroidectomy followed 3 months later and the histology was benign. Radioactive ablation (RAI) 2 months later to mop up any missed cells.

    Post cancer treatment is the same as post thyroidectomy, except that higher dose of levothyroxine is given to suppress TSH <0.1 to prevent recurrence and thyroglobulin is tested twice a year to check for thyroid antibodies which would indicate recurrence.

  • What do they mean by deformed? I'd want a second opinion. I had a scan and based on that they wanted to take away half thyroid as suspected cancer. I asked for FNA, nothing found. Was hyper went on carb which has now reduced to one every other day (only 5mg) and stable (touch wood)..... I am glad I didn't say yes to first consultant as was in terrible shock as words cancer. Turns out I was right to wait. xxx

  • What about Radio active idoine treatement to blast ur thyroid this is tablet but you can't sleep with you partner u can't be near pregnant women or vulnerable people or pets plus u have to get a letter saying u can still travel aboard

  • Hi Martin,

    It's hard to advise what to do in your situation without more information. I had the right lobe of my thyroid removed after a CT scan found a calcified nodule and the FNA came back as 5 and was then downgraded to a 4 because the hospital was not confident with it's own testing. My right lobe was removed just over a year ago and the surgeon was positive that it was not cancerous although I had my doubts. They could not biopsy during surgery as planned because they couldn't cut into the nodule and so I had to wait 2 weeks for the results. It was follicular variant papillary thyroid cancer and because it was encapsulated and hadn't moved out of the right lobe that I have not had any further surgery or RAI treatment. I am being treated with Levothyroxine to suppress the cancer's return and I am now hypothyroid because the left side is not working as hoped. Given the fact that there appears to be a family history of thyroid goitres in your family then the medics probably want to remove sooner rather later and start you on the necessary treatment. Before you proceed with anything I think the following questions need answering:

    1. What was the FNA scale reading? 5 = 100% cancerous, 4 = 80% cancerous as told to me by my specialist.

    2. How old are you? Age determines the outcome, the younger you are when diagnosed the better the outcome. I was 49 when my cancer was found, and even though my prognosis is good, I know now that it could return as the more serious anaplastic cancer that occurs in the 60+ age group and is difficult to treat.

    3. Have you had ultrasound scans? This is normal procedure and it can show whether it's a hot or cold nodule and this helps with the diagnosis.

    4. The 2 most common thyroid cancers, papillary and follicular and their variants, are slow growing and differentiated cancers because they actually look and act like normal thyroid cells. This means that they are hard to diagnose and will produce thyroid hormones and so thyroid blood results can be scewed and appear normal when they may not be.

    5. Do I have to have surgery now and why? I was rushed into my surgery and my right lobe was removed 3 weeks after my initial suspected diagnosis and I didn't have a chance to question what would happen after surgery. I was led to believe that once removed I would be fine and if not I only needed synthetic thyroid hormone replacement and I would be back to normal. One year on my health has suffered badly, the dosage of Levothyroxine is being increased every couple of months without improving my symptoms, I am constantly ill, it looks like the surgery has caused nerve damage (I'm having nerve conduction tests next week), they removed a parathyroid gland by mistake and this has caused me to have a calcium deficiency and also I have a Vitamin D3 deficiency that cannot be treated with conventional tablets because they use lanolin from sheep's wool to make it and I'm allergic to lanolin. All in all my journey has been the worst ever and I have since lost my job and my mother passed away 2 months ago.

    What ever you do don't feel pressured into making a decision you might regret. I'm hoping that things will improve because my endocrinologist is considering a combination of Levothyroxine (T4) and T3 but, if this doesn't work I don't know what will as it's hard to get the natural dessicated thyroid made from pigs' thyroid hormones.

    I wish you good luck and if you need someone to chat to please feel free to PM me.

  • Hi Walke40,

    Thank you for reply, it landed in my email account today but only part of the message was present. I've clicked on the link to read the whole message but it has brought me back to your original message.

    I trust that the surgery went well and that you will be on a full recovery to good health.

    Good luck, and by all means, keep in touch if you need a chat.

    TT xx

  • Hi thereThyroidThora , back again

    I went to an appointment with my thyroid surgeon this morning 21-05-14 regarding the lab results from the removed ½ of my thyroid and the bad news for me is Papillory cancer is present in all of the tissue samples so I have to have the other ½ removed to make sure of getting it all but he will do his best to keep the 4 small glands that dish out the calcium and other stuff? that my body needs to keep me well.

    A bit of a shock as I have never felt any ill effects from this problem apart from the feeling of exhaustion most of the time.

    So it looks like in for a penny in for a pound and in 6 weeks or so I will be thyroid-less and travelling down the same road as countless others looking for the mix that gives us back our health. Hope you are well now. Kind regards Martin.

  • Hi Martin,

    How are you doing?

    I've not been too good lately and I saw my endo last Tuesday for a check up and review of my medication. I saw him 2 weeks prior to this at the oncology clinic and I said I was concerned about my neck because it was feeling rather swollen. He said my submandibular glands were swollen but it could be a response to being ill with the a chest infection I'd had a few weeks previously. Anyway, he felt my neck and said that my submandibular glands were very swollen and he thinks they might contain stones. I'm going to have an ultrasound scan within the next couple of weeks to just to rule out any nasties. They are very hard and are pressing on my larynx, I keep losing my voice, and I worry that the cancer might be in these glands. My specialist also thinks I have Sjorjens syndrome whereby the mouth and throat is very dry and my eyes are very dry and gritty. This is linked to the salivary glands and is another autoimmune condition to add to the list I already have.

    Have you had the other part of your thyroid removed yet? If so, I hope you are okay and if not lots of good luck for when you have your surgery.

    Bye for now,

    TT xx.

  • Hi Martin,

    I'm really sorry to hear that your partial thyroidectomy found papillary thyroid cancer. It looks like you'll have the other half of your thyroid removed and then you'll have RAI treatment to make sure that there are no cancer cells lurking in other parts of your body. Has your surgeon told you this?

    The 4 little glands that he has told you about are your parathyroid glands and there are usually 4 but some people can have 8. They are the shape of a small peanut and regulate the calcium in your body. My surgeon accidentally took one of mine out because it was embedded in the isthmus (connective tissue) between the right and left sides of my thyroid lobe. I now have a calcium deficiency and vitamin d3 deficiency (they both work together) and because of this I should take supplements but can't. The NHS prescribe a combined calcium and vitamin d3 supplement but I'm allergic to the lanolin that is used to make vitamin d3 and I'm suffering because of it.

    I'm sorry this is a short message but my toddler grandson has just woke up and is wanting his tea. Take care and feel free to PM me if you need someone to talk to or a bit of advice.

    Have a good weekend and take care,

    TT xx.

  • Hi there once more, Still in a big dilemma as I have written before I have had a total thyroid gland removal 8ish months ago just to be on the safe side. It was done in 2 half’s and since then has been ok apart from a poor voice as one cord is no longer working but I manage ok apart from being so tired I can hardly stay awake moist of the time. I take 5 x 20? T3 spread over the day TSH 0.019. I’ve had a lump show up close to my wind pipe and also one a little higher towards my chin, a little pain. I had a fine needle on both of these lumps. I have just got back from an appointment with my surgeon and has said he needs to remove the lump close to my windpipe as it shows a tumour also I need to have the radioactive iodine treatment for good measure (I refused it on the last set of treatments).

    My big worry is after the fine needle tests the lump has virtually disappeared and no pain and my voice has almost returned to normal, my surgeon had to ask which side of my neck it was on as it is just a very small pea size now and he could not find it at first. I have agreed to this extra surgery and the iodine treatment but I am now wondering if there is another line of attack before the big guns. Any help will be good. If this does not make sense I’m sorry my thoughts are muddled. The surgery will be rushed in during the next two weeks. Martin.

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