Does anyone have any experience of thyrotoxic periodic paralysis?

Hi there,

does anyone have any knowledge or personal experience of thyrotoxic periodic paralysis?My son aged 8 yrs,is being tested and my husband has had the same symptoms since his youth.My husband has dairy intollerance.We suspect this triggered the episodes.Have removed dairy from son's diet and all episodes have stopped.

We have two family members with the same symptoms,the doctors we have met so far,have never seen this before.We want to discover the real reason for son's episodes,as my husband developed thyroid cancer in his 20's.I don't want my son to have the same future.

Paula x

4 Replies

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  • Hi

    Don't know if this is of any use -but here we go. Recently I had what I thought was thyrotoxic

    periodic paralysis.

    I have had thyroid cancer a couple of years ago increased meds and eventyally it came to a head when my leg wouldn't work very frightening! I then went to other leg etc hope this is what you mean. I had to walk with a stick never sure whether legs would work or give way.

    I'm fine now thyroid level correct.

    Don't know if this helps...

    Adele x

  • Hi Adele,

    It helps to hear your story,thanks.

    Your experience fits better than ours,to periodic paralysis.

    My son wakes up,with no symptoms the night before,is so weak he doesn't have the strength to walk or sit up,tearful,stroppy,feels ill but doesn't know why and craves food.You would swear he is having a diabetic hypo but has been tested several times and cleared of diabetes.Oh,and he has very strong ketones on his breath.When GP tested him,ketones in urine also.

    First time it happened,we didn't know what was happening and was told just a virus,he would get better.

    He didn't get better.Every day over a week,he got worse.To the point he was too weak to take food or drink,was in and out of consciousnessand and had an emergency admission to A+E.

    So,I am afraid very different story to yours but I am very grateful for your reply.It all helps to build up a picture,as we have researched this for years.

    Merry Christmas,Paula x

  • Hi

    So sorry to hear your story, wow!

    I was desiring lots of carbs, I was also tearful emotional just generally felt really ill and weak. The doctor thought I had a virus, blood work was good except thyroid level. Is it possible his thyroid works intermittently? I was informed that the pituary gland controls the amount of thyroid in your body not your thyroid.

    Hope you have a good Christmas

    Adele x

  • Hi Adele,

    sorry,just found your reply,as I changed my Name/password and re-registered.

    Wow,your situation is starting to sound very familiar!

    my son and husband also craved carbs,emotional,weak.

    Co-incidence you and my husband both had thyroid cancer.

    Since partial thyrodectomy,reduced symptoms continued into late 40's.Dairy-intolerance came to a head.Removed dairy and now symtom-free.

    Thanks for the reply,

    Paula and Alan x

    PS.We could write a book on this!

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