Thyroid surgery update – a roller coaster four years

It’s been a long time since I posted an update on my thyroid. This is partly due to the fact that nearly four years post-surgery, I’m still seeing doctors and having blood tests to try and figure out what is going on. It’s been a roller coaster of a journey, with difficult choices ahead of me…. so let me fill you in.

When I had my surgery back in December 2010, the idea was to have a total thyroidectomy to cure my overactive thyroid. No thyroid, no problem – right? So I thought, but it turned out due to to not being able to locate one of the nerves connected to my voice box, they had to leave a small amount of my thyroid in.

My scar is barely noticeable now...

My scar is barely noticeable now…

This has meant, since surgery, my thyroid has never settled down. I was put onto thyroxine and this dosage was gradually reduced until, a few months ago, I changed my GP who sent me to to see a specialist (better late than never), and was taken off the thyroxine altogether. I was told that, due to the fact it looks as though what is left of my thyroid could be turning overactive again, I could now be faced with two options: take an iodine drink to kill off what’s left, or face further surgery.

It wasn’t what I wanted to hear. I haven’t really felt any ill effects from my thyroid since the surgery, but then, I don’t think I’ve ever know what a ‘normal’ thyroid feels like, so it’s impossible for me to tell. Yes, I feel tired a lot of the time, but when you take into account my stressful job, long hours and the fact I lead an active life, exercising a lot – is that really so abnormal?

I’ve also had no problem losing weight at a healthy rate through diet and weight training – but then, when I look at the fact I’ve had four weeks of no training and eating cake (due to a shoulder injury) and I’ve hardly put on any body fat at all when I should have, maybe that is a sign my thyroid is still misbehaving.

But I haven’t given up hope. Since coming off the thyroxine my latest blood tests returned a good result – a sign that without any intervention, perhaps things are settling down? I’m not ready to commit to surgery or an iodine drink at this stage. Unfortunately, I do have a small lump reappearing where my thyroid is hyping up again. Before surgery I had a fairly large goiter, which then vanished, but the little remnant is appearing again. My doctor tells me it isn’t very noticeable, but I see it.

Using yoga and weight training to improve my health.

Using yoga and weight training to improve my health.

There is also the matter of my scar. It’s not pretty – the staples were taken out too soon and the wound opened – and I’m hoping to speak with the surgeon to see if further surgery would be able to solve this problem. Would going through it all again be so traumatic due to the fact there is less to come out? There are so many questions I still have.

At this stage, I am trying to really focus on getting my body to a place where it’s working at its best through nutrition and regular exercise. Training gives me zest, makes me feel healthy, and eating a clean, nutritious diet is what I need right now. I’m trying to cut back on thryoid-stiumlating vegetables such as raw brocolli and spinach, and making sure I eat Brazil nuts every day which contain thyroid-supporting selenium.

Before my surgery in 2010 my goiter was very pronounced.

Before my surgery in 2010 my goiter was very pronounced.

I know I can’t sure my thyroid through my diet, but perhaps I can nourish it enough so that it will work better? I’m no medical expert, I don’t know if it will work, but that is my plan, because right now I cannot face the thought of going through that whole experience again.

So that is where I am – four years post-op but still smiling despite the rocky ride! My scar is barely noticeable to others and my surgery seems like a distant memory now. I’m hoping I am back on track, but time will tell.

Has anyone else who had a sub-total thyroidectomy had a similar experience? I’d love to hear your stories, please share them below or feel free to get in touch.

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7 Comments

  1. Janet
    September 4, 2014 / 21:28

    I too had thyroid op..took out 3 of the 4 parathyroids….and had the long wire type closure..with little beads on each end. Looked like Frankensteins monster. Took the closure out Christmas eve 2009. My scar was still a mess. It did fade a little…but was still livid.
    What has sorted it out…was some laser treatment. Not cheap..but an investment. Scar is now barely visible… You have done well…really have…If I can find the photos for the before and after…I will send.

  2. diane
    September 4, 2014 / 22:27

    Might be worth checking the brazil nuts aren’t encouraging hyper activity. My understanding was that the selenium in brazils caused the conversion of T4 to T3. I may be wrong and it may be psychological, but if I eat more that 5 or 6 brazils in a week for more than one week I feel like I develop hyper symptoms….great for weightloss, but not for tiredness etc. Love the blog x

  3. September 5, 2014 / 12:20

    Good morning Sarah

    Hope this works….the ” before” photo….and the “after” will follow when I have taken it….

    Janet

    ________________________________

    • September 5, 2014 / 20:40

      Hi Janet, I can’t see the photos – perhaps you could email me? glutenfreeblogger[at]hotmail.co.uk 🙂

  4. Felix aka "thyroid geek"
    September 9, 2014 / 03:42

    Not exactly what are you asking for but,
    As long as TSI antibodies are present they will stimulate thyroid activity and growth.
    The best thing is to halt production of these antibodies but most doctors are focusing on “killing” or cutting off the thyroids.

  5. Diane Russell
    January 17, 2016 / 11:44

    Hi
    Stumbled across this. Hoping you are better now, but just in case. . . I got loads of help from wonderful and knowledgeable people on ‘Mediboard Graves disease forum ‘. Lots of the American women were very anti RAI but very positive about ‘block and replace’ – chemically blocking all T4 production and replacing with thyroxine. Good luck x. Ps second the Brazil Nuts comment! also worth checking docs are making medication decisions from T3 testing not T4 or worse TSH x x

  6. Jennifer
    November 12, 2016 / 17:43

    I had my whole thyroid out in March 2003 because of hyperactivity and a nodule loaded goiter. I started levothyroxine after that. By January 2013 I had a large (in my opinion) growth reappear. After needle biopsy and some other tests I found out it was not a functioning gland.
    I had a second thyroidectomy done January 2013. The only surgeons willing to touch my case were university surgeons because the gland was the size of a peach and went below my collarbone. The second surgery had a smaller incision than the first and they were able to go in through the previous scar.
    I feel better but I still feel something is missing in my treatment.
    I have remained on the same dose of levothyroxine(0.1 mg) the whole time with a TSH of about 1.25.

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