Thyroid removed

Can I please ask has anyone had the op to have there thyroid removed and what they have been like since having it removed.i had an overactive thyroid 4 years ago and it went away after taking carbimazole for about 18 moths.The doctor said it Graves' disease.it had returned after 4 years and I was on carbimazole again I have stopped taking this about 2 months ago as it stops me from sleeping and I feel fine I went for a blood test and it came back fine my thyroid has gone back to normal but the hospital said I still have to have the operation to remove it. I have heard after the op it will slow be right down and it takes a while to get the thyroxine level right as I will have to take it for the rest of my life if I have the operation.I now know myself what brings it on and can monitor it the surgeon said it will return and that's why I have to have the operation but I've been really well for the last 10 weeks.Has anyone had the op and regretted it afterwards and what were they like after having the op would appreciate any feedback please as I'm stuck on what to do as if I feel ok I don't see the reason to have it and be on medication for the rest of my life thank you in advance

27 Replies

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  • Ibbo I started off the same as you with Carbimazole for 18 months, but my graves did not settle and I ended up with a sub-total Thyroidectomy while 14 weeks pregnant with my daughter, after having a son 20 months previous to this with hormonal problems. My daughter was fine. If your blood tests are fine,I would certainly not have an operation to remove it. You can be on Carbimazole quite a few times I believe. Please do some more research. We are rarely treated optimally after a Thyroidectomy and Levothyroxine is not very good quality these days. I wish you well.

  • Thank you so much for your post I really appreciate it.I have spoken to my doctor and she agreed with me and said she didn't see why I should have the op but the hospital have said otherwise I'm waiting for an appointment to see them as I feel perfectly ok and my blood results were good I'm am going to say I don't want it and see what they say thank you so much kind regards Sharon

  • Ibbo it would be a good idea to put your blood levels with ranges on this thread so others can give you the benefit of their knowledge.

  • I agree. If you can find alternative to surgery, do it. My life has been a roller coaster ride for 3 years. Good luck

  • Although asking on the forum may be a fair representation, I think most would say hold on to your thyroid if you can. If you feel well or prepared to make some life changes to improve your health, I would certainly opt for that.

    Doctors are too keen to remove your thyroid for their convenience and not yours and will tell you that if you take a little white pill for the rest of your life you will be cured. But the fact the of the matter is, you have Graves' Disease and one of the symptoms is that it attacks your thyroid among other things. Removing your thyroid will prevent the attack but you will still have Graves' disease, only with no thyroid. I preferred option A, with thyroid!

    If I had taken as much time to understand the disease before I had my thyroid removed as I have done post thyroid, I'd still have my thyroid.

    If you feel you manage for a while and take the time to explore and understand the disease, do that and do not be hurried along the thyroid conveyor belt.

    Further, your doctor or endocrinologist may tell that being on medication long term is not good for you, however this theory has now been updated. thyroid.org/guidelines-hype...

  • Dont be bullied into having your thyroid gland removed or ablated, especially as you feel fine and have no symptoms.

  • Doctors and endocrinologists will often tell you that you must have your thyroid removed or take radioactive iodine (RAI) to kill off your thyroid, if you are hyperthyroid.

    1) If you cope well with carbimazole or PTU then removing your thyroid is not necessary.

    2) You can't legally be forced to have your thyroid removed if you don't want to. Doctors still have to treat your overactive thyroid if you keep your thyroid, they can't withdraw treatment.

    3) If you decide on treatment then avoid RAI. Anyone with Graves' Disease could end up making Thyroid Eye Disease (TED) worse if they have RAI, or they could develop TED after RAI.

    4) If you decide you want to have permanent treatment for your thyroid then have surgery to get it removed rather than RAI.

    5) Are you absolutely certain you have Graves' Disease? You need to have had TSI/TrAb measured and found to be positive to have Graves' Disease. But apparently some doctors never measure the Graves antibodies and just assume the patient has it if they develop hyperthyroidism. It is possible (and quite common) that people could become temporarily hyperthyroid with Hashimoto's Thyroiditis, but this problem slowly destroys the thyroid and the patient eventually becomes "normal" then hypothyroid.

    6) I realise that being hyperthyroid is intolerable for some people, in which case removing it is a good idea. But if you are coping well then I think you should keep it.

    7) Obviously in cases where goitre is present and makes swallowing and breathing difficult then that is a different situation. And ditto with cancer. Removing the thyroid may be the only solution.

  • Have you seen this website?

    elaine-moore.com/

    I've seen it recommended for hyperthyroidism quite a few times.

  • Hi thank you very much yes it is definitely Graves' disease all they have said is that yes my blood levels are back to normal but it would come back again but I feel fine I stopped taking the carbimazole about 10 weeks ago as it stops me from sleeping I slept really well after I stopped taking it and I feel the best I've done in weeks.i will go back to the hospital when my appointment comes through and speak to them and say I don't want the op and take it from there if it comes back in a few years I will just have to see what happens as I can monitor it as I know what brings it on they did try and get me to just take the radio iron tablet I'd heard a lot of bad things about it so I refused it which did not go down to well with one of the doctors at the hospital he told me he didn't see why I wouldn't take it but said it's your choice have to say he wasn't very happy about it.thank you very much for your reply I do appreciate it

  • For information on antibodies, take a look at the table on this page :

    labtestsonline.org.uk/under...

    You should ask for the results of the blood tests which show you have Graves' disease, and also for the results of any thyroid function tests you've had. Make sure you get the reference ranges. Then post the results on a new post and ask for feedback, just in case anyone here has something to contribute.

  • Thank you so much for your replies it does mean a lot to me.My doctor sent my blood results to the endocrinologist as she agreed with me as my thyroid levels were normal.The hospital phoned me and said I still had to have the op I went for the pre op about 3 weeks ago and asked questions there all they say is it would return but as I can monitor it myself and I feel the best I have done in a long time I don't see how having the operation is going to benign me in the long run as I will be on medication for life as they have said and will feel tired all of the time.im used to been active and getting about.im just waiting for an appointment to come from the hospital as they want to see me to say I have to have it but I have decided I'm not having it and will just see what they say but I do feel really well thank you very much for your replies xx

  • Stand your ground Ibbo. I only had to have an op because I was pregnant at the time and things were turning nasty for me and the baby. I also wish I had known more then. Today, with the help of the internet, it is much easier to check out information. Wish you well.

  • my husband had little option but to have the op and sadly it was not recognised that his body simply could not cope on so called "normal " levels so he spent 6 yrs on no meds in utter hell another 12 going nowhere on levithyroxine and or t3

    for him only NDT restored him to health and he is now 74

  • I had my thyroid removed totally 34 years ago when I was 33 because of cancer and I've had a very happy life since. Over the years the amount of levothyroxine I took reduced as I got older.

  • I had a total thyroidectomy in Feb 2012. I was in hospital overnight and had the large stitch in for a week. The operation and subsequent scar were uncomfortable but not painful. I took 3 weeks off work to recover as my levothyroxine level was total wrong, so I had days of being hot then cold. Days of being happy then sad etc. These days slowly decreased as my levels became stable. Six months after the surgery I had the most delicate of scars in one neck crease which unless I point out, no one knows is there. My levo thyroxine levels were correct and I was losing weight for the first time in 25 years. Here I am today, five years later 110 lbs lighter,feeling fantastic,happy, healthy and wishing I had gone through the thyroidectomy years before. Yes I will be on the two little white tablets everyday but. i'm thankful for that as how they have transformed my life and my whole being is remarkable.

  • Mmm my endo wanted me to hve op soon as (i had multi nodular goitre) my gp said hang on to it as long as poss with regular checks. I hung on for 3yrs before it became retrosternal and had to come out in dec14. Its deff an ongong battle to get the right treatment post tt, im still trying to get back to "normal" and i worry about longterm health as cant work or exercise

  • why not keep your thyroid ... as you seem to be thinking that anyway and just learn how to, if you have short periods of being Hyper ... take things like Bugleweed , Motherwort and lemon balm ... which works very well indeed for us with Graves ...

    I decided to keep mine .. and Thank God I did. ..i'm now Euthyroid and feeling very well .

    I have my life back.

    On the other hand i've had to watch my Grandmother, Mother , sisters, cousins and nieces ..all suffer horribly with bad healthcare when they became Hyothyroid ..

    A No Brainer really.....

    luv mx🌹

  • HYPOthyroid

  • I had thyroid cancer 2.5 years ago so had my thyroid removed. To be honest the operations were the easy bit and I had several radio active treatments which I also recovered from quite quickly. Now 18 months into normal living on levothyroxine and I am really struggling. All the blood tests say I am optimal and I follow the advice about taking on an empty stomach but I am lethargic struggle with my weigh and feel constantly exhausted. My oncologist says it's I'm struggling after the diagnosis and it is not due to the levo. I done agree I am a positive person and grateful that I am well again but my life is restricted by the constant exhaustion , joint pain brain fog etc. given the choice I would have retained my thyroid which is now the thinking to watch and wait. I know I do not have the same condition but I thought my experiences of living with out a thyroid may help you to take a balanced view

  • Vanda23

    You should get hold of copies of your thyroid function tests from the last few years and also get results of any nutritional tests done.

    You could be on the wrong dose of Levo, could be low in T3, could be low in nutrients. Any of these could make you feel awful and exhausted. Your oncologist sounds like a tw*t. If someone feels terrible there is usually a reason for it. Blaming the patient is cruel and pointless.

    We can probably help you. Once you have results post them in a new post of your own and ask for feedback. Make sure you include the reference ranges. Don't allow yourself to be fobbed off by the way. You are legally entitiled to copies of your test results. You may be charged a small amount of money (check before they print anything what you will be charged). If they try and charge a lot, come back to us for more help.

    Be aware that receptionists usually have to ask for a doctor's permission to print out results, so you may have to ask one day and collect them the next.

  • Hi there I had Graves first diagnosed in 2010 it was sorted with Carbimazole and then came back with vengeance in 2014! I have had the full opp total removal and feel great in 2015!!! Sleep is a joy, no more sweats and shakes, massive mood swings bla bla. In my opinion I wanted to be normal again and I won!! The opp was OK and recovery very quick. The scar is barely noticeable. If it gets as bad as mine was I would seriously consider it, I feel great! I as discussed otherwise no longer have Graves but are hypo rather than hyper which the only side effect I get is feeling a little tired at times as I am taking Thyroxine 125mg 1 day and 150mg the next and as I said I feel great. I wasn't bullied into having the opp it was my decision as the consultant said that there was a chance that the Iodine treatment would not be totally effective and it could come back.

  • Hi,

    I will just say what most other people are saying - DON'T DO IT!

    Go by how you feel - if you feel fine then there is no need to have it removed.They can't force you to, it's your body and your choice! Don't let them bully you into it as it is more convenient for them.

    The specialists make it sound easy, you have it removed,then take thyroxine for the rest of your life, no problem.

    It's not quite like that I'm afraid. The operation is the easy bit, it's what comes afterwards that's the problem.

    I had mine removed 15 years ago because of Hashimotos and it had enlarged and was pressing on my throat, and I have never felt the same since. I have often thought since that I should have waited and explored other options.At the time I trusted the specialist who said it was the best thing to do.Yes the medication does a job,and I am one of the few lucky ones still getting T3,but it's not the same.I don't have the energy I had before,I get tired quickly when I start to do things,I get frequent headaches.

    Maybe some people are lucky and recover fully, but I think they are in the minority,judging by the posts on this site.

  • I believed I was taking the correct decision to have RAI after a TT for multi nodular goitre. I chose the RAI because I was aware that the remnants of the thyroid that the surgeon could not remove, for fear of causing me irreparable harm, could return with a vengeance as it recovered.

    After the horrors I had been through I believed I had taken the appropriate decision.

    I WAS WRONG!

    The treatment the NHS has to offer for those without a thyroid is quite horrific. Levothyroxine alone fails completely to give us good health and nobody in charge either understands or is permitted to take any other action. Perhaps a few exceptions who are OK on levo I am informed.

    I may have been able to enjoy a further few years of normal life but my retirement was totally ruined and I am now trying to exact my revenge on those who lied to me or failed to tell me the truth in defiance of the instructions of the BMC.

  • Thank you so much I have spoken to a few people who I know personally that had the rai and they have also said it was the worst thing they did and wished they had never taken this many thanks for your reply I do appreciate it and wish you well

  • Ibbo ...you appear to have your answer...😻

    best of Luck

    Luv Mx🌹

  • Hi Ibbo,i had my thyroid removed 6 years ago as i was told i had quite a few nodules on my thyroid so i was told i had to have it removed.I felt so well for 5 years on levothyroxine 100mcg,but 15months ago i started to feel really unwell,still feeling lousy just waiting for an app to see my consultant.My sister had the same,shes been on thyroxine 100mcg about 10 years now and has never had a problem she been fine.

  • Omg your still waiting for an app that's really bad.im not surprised you feel unwell.I did have an appointment for next week to go and talk to them about my operation but they have just cancelled it and given me an appointment for June but while I feel as well as I do and I have done for a few months I'm going to tell them I don't want it.I don't think they will be to happy but while I'm as well as I am I don't see the need to go through an operation.I hope you get sorted out soon and your feeling better soon xx

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