Post thyroidectomy

I'm not sure where I am at the moment........I had a total thyroidectomy 2 months ago as a result of a goitre, saw the surgeon 2 weeks after the op and at that appointment he told me it was hashimotos. My next appointment with him is in September and I am sure at that appointment he will discharge me. I've not seen anyone else despite asking me GP for a referral to an endocrinologist for advice on.......well life after a thyroidectomy, my GP would not refer saying there is no need to see an endo as I should not have any problems now the thyroid has been removed, my energy is very much improved.......still get very tired by the end of the week and needing to sleep during the day but I am better except the pain in my hips, thighs, lower back and joints, I've still got insomnia which I've had for the last 2 years and I think I will have to accept that. I am taking 200 levothyroxine, vitamin D and calcium. This may sound silly so I apologise in advance but if the Hashimotos disease attacked the thyroid resulting in the thyroidectomy does that mean once removed the Hashimotos disease no longer exists? I read somewhere that if any cells are left following surgery the Hashimotos can attack the remaining cells, is this correct? I am a determined person and have a lot of questions but lack of support and understanding from my GP leaves me in the dark. I feel I need some answers so I can continue to improve........I am a busy person, with a life to live, I need to understand because I don't want to go back to where I was pre op, I won't live with this disease, but will let it live with me, where I take control not the disease. Any advise is so welcome......thank you.

3 Replies

  • Welcome to the forum, Mrsgee.

    There will be some remnant thyroid cells left in the thyroid bed post thyroidectomy. That can be enough for Hashimoto's to continue to be a problem but it doesn't mean it will be. I had no Hashi problems post thyroidectomy for thyCa or during the 3 months I waited for RAI ablation. If you do have ongoing Hashi problems the best thing you can do is adopt 100% gluten-free diet. This helps many members manage Hashi's and reduce antibodies.

    My surgeon referred me to endocrinology 6 months post thyroidectomy and 3 months post RAI. No-one discussed 'life after thyroidectomy' with me. As far as they were concerned I simply needed Levothyroxine, had bloods tested for levels and post thyCa markers, dose adjusted as required and throat and neck examined.

    It takes time to recover from thyroidectomy and the previous thyroid problems, you seem to be doing very well indeed after 2 months but realistically it will take around a year to stabilise, optimise your Levothyroxine dose and recover. Make sure to ask your surgeon and endo, if you are referred, for a printout or verbally for the results of your thyroid results with the lab ref ranges after every blood test. It helps to monitor your progress and you will become familiar with the levels/dose at which you feel best.

    Thyroid patients are often low/deficient in ferritin, vitamin D, B12 and folate which can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Ask your GP to test them and post the results with the lab ref ranges in a new question and members will advise. It is important to ask for a printout with the ref range for every blood test. Doctor's are inclined to tell us results are 'fine' or 'normal' which simply means they are within range. To feel well we need optimal results and to supplement when they are not.

    Were your parathyroid glands damaged during surgery or were you taking calcium and vitamin D prior to surgery? VitD and calcium bind with Levothyroxine and affect absorption so make sure to take them 4 hours away from Levothyroxine.

    For maximum absorption Levothyroxine should be taken with water on an empty stomach, one hour before, or two hours after, food and drink, 2 hours away from other medication and supplements and, 4 hours away from iron, calcium, vitamin D and oestrogen.

    Leave 24 hours between last dose and blood draw as it skews results. Take your Levothyroxine after a blood draw.

  • Thank you so so much.......finally advice that makes sense, I've been taking all my med...levothyroxine, vitD and calcium all together so I will now alter how I take the meds, make sure I get a print out of results and follow a glutin free diet.

  • Mrsgee, taking them together will almost certainly have reduced absorption and uptake of Levothyroxine. If you start to feel overmedicated ie racing heart, palpitations, anxious, hot, sweaty, diarrhoea etc. (not necessarily all at once) you may need to reduce Levothyroxine to 175mcg/200mcg alternate days or even 175mcg.

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