Need advice after total thyroidectomy and hypocalcemia

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Hi All! I'm hoping someone can share a similar experience and advice. I developed Graves' Disease in 2016 after the birth of my son. I had a total thyroidectomy on 2/2/18. Three parathyroids were noted to be viable after the surgery. One was unaccounted for but did not show up on the pathology report. I had outpatient surgery and went home same day. On the third day post op I developed severe hypocalcemia and had parasthesia and tetany of my hands and face. My face was distorted and I could not speak or see. The ER doctor initially thought I had a stroke and said it was the worst case of hypocalcemia he'd seen--but at my lowest, my calcium was 8 and my magnesium was 1.4! I was treated with calcium and magnesium and discharged. Two days later I was back at ER because I was still experiencing numbness, tingling, twitching, vibrating,etc and was so nauseous I could not keep any calcitral or calcium down. I was treated with anti-nausea IV, given magnesium,  and discharged. My calcium showed high at that time. It's now been a month and I am still experiencing terrible parasthesia, weakness, tremors, nausea. I can barely walk and am unable to work or take care of my little boy. I am worst on my left side, but both sides are affected. I'm taking 50 mcg calcitrol once daily, 1000 mg calcium, and 330 mg of magnesium daily. My labs are normal. My calcium has maintained in the low 9's.  My endocrinologist is dismissive because he said it doesn't add up.  I have a neurologist consultation scheduled for next week. I wish I had taken the radioactive pill now, but I didn't want to be away from my baby. Now I'm scared and unsure what is wrong with me. Has anyone else experienced something similar, and were you able to treat and resolve?

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  • Posted

    Dear Mel 

    I am extremely saddened to hear of your illnesses since your thyroidectomy ..  and that you feel so bad trying to care for  your little son who needs you so much .

    He does need you but I’m sure what care you are giving him is sufficient for his simple needs

    You  are the one who’s needing help just Now ..

    I have  Graves  but have not

    Had Thyroid surgery and  so I’m not able to help you much ...

    But I do know tho that it will take some time for  your high thyroid hormone levels to leave your body 

    ...And so it’s very possible  that that is keeping your body

    on ‘ high alert ‘  even tho there’s no thyroid to make new hormones  

    When I stopped Carbimazole I was still jittery nervous and very anxious for a number of weeks  afterwards.

    I do think that you need to take a loved one with you to GP and Endo or to Hospital  visit to back you up here .. I would be very angry indeed that no one seems to be doing what is best for you in your situation .

    Can you get your bloods done 

    ...Including of course , very vital vitamin  minerals and nutrients  testing ...      

    you will definately be needing  to supplement  those ...to enable and help you balance your body again.

    You seem to have suffered shock 

    And operations can certainly be responsible for that !  

    That’s why it is necessary to get  appointments  made .. Pronto  

    And take someone who loves you with you .

    Best of Luck Luvvie .. try to enlist help from family or friends 

    To relieve you and allow you to rest .. then empower yourself to 

    Get doctors to heal you ., or try your best to do that on your own if needs be .

    Love M x🌹

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  • Posted

    I had my thyroid out about 8 years ago and it took ages for the levels to settle.  It may even be you are on the wrong replacement dose ?  My surgeon told me that as long as a couple of the paras were still there I would be fine so my guess is a mix of shock, stress and your body trying to come to terms with not having all that hormone flying about.

    I usually take 150 ug as a replacement - add 12 ug ( half a tiny pill ) and I go way over , drop it back and I go to sleep much of the day !  Likewise my level of physical activity and stress has a dramatic effect on my thyroxin requirement and I find it necessary to lead a fairly measured life.  Any violent activity can lead to a real dip in levels and a day by the wood burner doing nothing can send me a bit over.

    ?I'm not a medic, but it strikes me you have too much thyroxin in your system.  I was put on a dose that was far too high and left with no further checks for 12 months during which time I had terrible problems. It is a really critical balance, like tuning  a car engine - but you WILL get it right and once you do all will be OK.  I know that isn't much help but I think a lot of us have been in the same place where the medics do the interesting  mechanical bit but don't bother with the chemical fine tuning afterwards which is left to trial and error by the patient !

    Tiny pills,  but they pack a punch !

    Good luck !  :-)  It will come right for you.

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  • Posted

    I had a total thyroidectomy June 30, 2017. I, too, suffered from hypocalcemia but not as severe as yours. It was pretty scary. It took a good three months for my levels to normalize. Give it time. Continue taking the Calcitrol and calcium. Do not skip any dosage and pop a calcium tablet anytime you feel the tingling. All the best!
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  • Posted

    Thanks for your quick and kind replies. You give me encouragement that all will be ok. My PCP started me on a Medrol pack hoping that will calm my body down. I'm taking 137 mcg of Synthroid. My most recent TSH was 1.19. Nothing Is making sense. Hoping it resolves quickly!

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  • Posted

    Hi mel53669, you may be suffering from hungry bone syndrome. This can happen after a thyroidectomy especially if the patient was hyperthyroid for an extended time before the surgery. This is likely a transient condition and I hope your levels normalise soon. The symptoms sound really scary.
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