Side effects, from thyroidectamy

Hi, since , having my thyroid removed , , I been suffering, from fatigue, weight gain, aching feet, joint pain, sensitive teeth, , joint on my fingers locking , itchy eyes,. I've raised the matters with my oncologist, especially the joint pain,, and they look at me as though I'm stupid, they think it's all in the mind, , do any of you out there have the same problems, , I need some proof for the next time I'm at clinic to make them believe me,

15 Replies

  • Oh my goodness yes. These and many more following my thyroidectomy. I was also told I was just depressed even though I became bed bound and had seizures because my calcium was crashing. You sound under medicated. Make sure you ask for copies of your blood results and post them on here. There are many knowledgeable people who will be able to comment and advise you. I have still not totally regained my health but am so much better with advice and information from the helpful people here. Do not be fobbed off and read everything you can. People probably do become depressed eventually because they are forced to live such miserable lives with inadequate thyroid replacement.

  • Thanks for that, it's nice to know I was right,

  • Hi I feel for you and it brings back memories for me .I agree don't get flobed off ? Hospital doctors somethings I feel don't understand the impact thyroid problems can have on your. quality of life. And in my experience if you start with quite severe side-effects and symptoms these often take a while to settle down and will often re-present in the future

    Trying allow yourself the time and space to understand that it's okay to feel tired this is just part of the symptom

    Good luck and I hope you feel better soon

  • I doubt the medical profession really know how much the thyroid gland is necessary for our whole metabolism - once removed (of course it must be if cancerous) . A link which will give info about why a Petition is before the Scottish Parliament and the real facts about what can really be quite common when thyroid gland is removed.

    Endos also believe that prescribing levo alone for a replacement fits all patients when it clearly doesn't. Many who still have their thyroid gland don't recover as they should if not on the correct dose/thyroid hormones for them and at an optimum level. Most are floundering in the dark wondering why they're taking replacement and feel worse that previously thus searching the net for advice because it's not coming forth from the 'specialists' who pay more notice to a dot on a piece of paper (blood test results) than the patients' very worrying clinical symptoms, probably new ones they've never had before.

    Read Thyroiduk's Open Letter on the following link. They've been working hard re the Scottish Parliament and raising awareness overall.

  • I have just realised I just took it for granted that you were on levothyroxine so just want to clarify what are your being prescribed and dose. This is up-to-date info on having your gland removed, although this was an experiment on rates I believe it should still apply to us Human Beings:-

  • Jomo19, can you post your recent thyroid results and ranges (figures in brackets after results) and members will advise whether you are optimally medicated.

    Hypothyroid patients are often deficient/low in ferritin, vitamin D, B12 and folate which cause fatigue, musculoskeletal pain and low mood similar to hypothyroid symptoms so ask your GP to test.

  • Hi Jomo19, I had my thyroid removed 15 years ago, and it's been up and down since then, but don't lose hope because there's always things you can try. You'll find you need to be a little bit obsessed and committed to try different treatments. There is some research published on Thyroiduk which shows that rats with no thyroid needed T4 and T3 combi, and many people get better taking NDT with no thyroid because it also replaces other thyroid hormones which endos argue are simply conversion chemicals but may turn out to be more than that (T1 and T2). You are not mad, it is all true and real, don't doubt yourself. You will feel better one day, it just takes time and commitment.

  • Many thanks for your support

  • HI

    So sorry to hear you have been so bad since op. Have you got enough support around to help you.

    I so hope you get the correct dose you need so you can start to feel better. Don't give in and stand your ground with the docs , though I know sometimes it's hard with them against us.

    How long ago did you have thyroidectomy?

    I recently had total thyroidectomy. Post 11 days just on 125mg levothyroxine so waiting to see what happens with me!

    Look after yourself and fingers crossed you will start feeling better soon.


  • Hi snow, it's 5years now , I'm on 200mgone day and 225the next, but thing are getting worse all the time , thanks for your support, Jomo,

  • I think that someone should invent a programme which will be obligatory for young surgeons, of all specialties, and which will make them, in a kind of virtual world, suffer from the diseases they'll be treating. This way, they'll, hopefully, end up understanding their patients' suffering and treat them, first, with respect when they enumerate their health problems.

  • I totally agree with you

  • Jomo19, I had a thyroidectomy in April 2013. I've been mostly house bound since. This forum gives great information about loads of things your doctor's won't know about .

    Since I've been here I've sorted my vitamins, seen a functional doctor to treat my adrenals, and have now started buying my own dessicated thyroxine from abroad and planning my own treatment. Have finally started getting some real improvements.

  • I am sorry to read your post, but I am exactly the same. Its good to know that we arent alone in this struggle. I hope your doctors are doing something about it and you feel better x

  • Thanks very much for your support

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