Still totally exhausted 3 months after total thyroidectomy

MPaccione
MPaccione Member Posts: 2
in Thyroid Cancer #1
I had a total thyroidectomy 3 months ago and I am still feel quite exhausted! I was told by the surgeon that my thyroid was wrapped around my wind pipe and my esophagus, and that cancer cell had been found. The surgery went well, and the pain was tolerable, not a big issue. The problems that I am having at the moment are, extreme fatigue and tingling around the right side of my face..more centered around my ear.I just had blood work preformed yesterday & am waiting for the results. BTW; I take 125mgs of levothroxin and am on 1500 mgs of calcium daily. Will this fatigue abate? Thank you! Maureen

Comments

  • skcalkins
    skcalkins Member Posts: 39
    #2
    Hi Maureen let me first say
    Hi Maureen let me first say glad your surgery went well. My Thyroid was also wrapped around several things one being my parathyroid(controls calcium,think I got that right).He said he was happy I was speaking so well after surgery as he had to stretch things a little more than he liked but it all went well. I also had to take a lot of calcium and stay an extra day in the hospital because my calcium levels dropped so much.Did the doctor have you take the calcium pills or do you just take that on a daily bases? I was having to do 3000 mgs a day and getting blood drawn twice a week till the levels started coming back up, I had a lot of tingling in my face, hands and feet because of the low calcium.

    I was started out on 100mgs after the surgery then had to go hypo for the RAI then they upped the dosage to 150mgs cause they said my levels were still really low. I was started to feel a little better but not 100% of what I was. I am now going hypo again because the bloodwork and body scan showed lymph nodes involved. I asked the doctor what my last blood showed about my levels on the 150mgs and he said that they were going but if I was still feeling tired then they may have to up it a little bit when I could go back on my medicine. I hope you can get your levels up and feeling better, I have seen several people on here who are doing very well and I'll keep you in my prayers that you will be one of them.
  • nasher
    nasher Member Posts: 505 Member
    #3
    are they planing on giving you RAI
    If they are they are probably keeping you in a hypo state... it was 2 months from the 2nd thyroid surgery before I got my RAI and they were keeping me hypo during that time.

    I also had 2 parathyroid’s removed (yep calcium is one of the things they control)

    I am guessing by the calcium that you are on that they took at least 1 of the 4 parathyroid’s.

    do they have you on Vitamin D as well (helps calcium be absorbed)

    once they get your levels of thyroid meds figured out (and after RAI) they will get you to a point that you will be feeling more like yourself (I won’t say normal) and a lot of the fatigue will go away.

    Myself I have found out 1 year after that i still suffer from fatigue now and then but i try to get 7+ hours sleep a night and normally take a 1-1.5 hour nap after I get off work and that seems to work out fine with me... I am still taking calcium and Vitamin D because my level of D went extremely low.

    Also if they are not sure if they want to give you RAI or not I would push for it... most people who have decided to skip the RAI seem to come back later wishing they had it.

    please keep us informed and good luck
  • angelboatright
    angelboatright Member Posts: 4
    #4
    Maureen,
    Thank you for
    Maureen,

    Thank you for sharing your story. You are such an inspiring lady and hang in there: it will get better. Trust me, being in hypo stage is no fun. But I think Nasher brought up a great point about the Vitamin D and you may want to explore further as it has been a critical issue with me. My level have been extremely low since before my surgery in 2009 and off and on. My physician has given me a concentrated level of Vit D. I have noticed when my levels are low, I get the tingling in my hands, fingers, feets and toes.

    I will keep you in my prayers and thoughts.
  • MBuff
    MBuff Member Posts: 11
    #5
    angelboatright said:

    Maureen,
    Thank you for
    Maureen,

    Thank you for sharing your story. You are such an inspiring lady and hang in there: it will get better. Trust me, being in hypo stage is no fun. But I think Nasher brought up a great point about the Vitamin D and you may want to explore further as it has been a critical issue with me. My level have been extremely low since before my surgery in 2009 and off and on. My physician has given me a concentrated level of Vit D. I have noticed when my levels are low, I get the tingling in my hands, fingers, feets and toes.

    I will keep you in my prayers and thoughts.

    I was on 150 mcg of
    I was on 150 mcg of Synthroid after my TT and my TSH was high at about 6. That was enough to make me feel completely exhausted while trying to work, etc. I switched to 175 and feel somewhat better. Haven't had RAI yet-- that's in April with Thyrogen.
  • nasher
    nasher Member Posts: 505 Member
    #6
    MBuff said:

    I was on 150 mcg of
    I was on 150 mcg of Synthroid after my TT and my TSH was high at about 6. That was enough to make me feel completely exhausted while trying to work, etc. I switched to 175 and feel somewhat better. Haven't had RAI yet-- that's in April with Thyrogen.

    I am glad to hear you are
    I am glad to hear you are lucky enough to go with thyrogen instead of cutting off the synthroid.

    myself I am on 200 mgc of synthroid and 25mgc of cytomel and it seems to be working for me.

    @ all-- trust me we all know about the exhaustion untill they get your levels close to right or right you will probably feel exhausted... Again i think my levels are working for me but i still have exhaustion now and again.
  • latinasurvivor
    latinasurvivor Member Posts: 1
    #7
    Increase your calcium
    It took me a good 6-8 months before I didn't feel so tired all the time. Increase your calcium, that should help. I will keep you in my prayers.
  • Baldy
    Baldy Member Posts: 243
    #8
    latinasurvivor said:

    Increase your calcium
    It took me a good 6-8 months before I didn't feel so tired all the time. Increase your calcium, that should help. I will keep you in my prayers.

    Calcium
    If you're calcium deficient, there should be some other symptoms. If I remember correctly, tingling around your lips and mouth and brittle hair and finger nails. There are others that I can't remember off hand. BUT, if you haven't already, have your doctor test your calcium level, that's the best way to make sure.

    Alan
  • nasher
    nasher Member Posts: 505 Member
    #9
    Baldy said:

    Calcium
    If you're calcium deficient, there should be some other symptoms. If I remember correctly, tingling around your lips and mouth and brittle hair and finger nails. There are others that I can't remember off hand. BUT, if you haven't already, have your doctor test your calcium level, that's the best way to make sure.

    Alan

    get labs done
    If you think there is a problem then get labs done

    Personaly I know I have calcium and vitimin D issues so every 4 or so months I am getting those tested as well as being on suppliments for them.

    yes Alan is right there are lots of other things it could be as well and its better to make sure

    for myself my vitimin D was so low they put me on mega doses for 3 months and now im just on normal suppliment doses (about 4x the Recomended daily alloance)

    if your Vitimin D is to low there is no way besided doing mega doses to fix it. If its normal and you do mega doses you will get alot of bad side effects so... get everything you can checked.
  • catladysue237
    catladysue237 Member Posts: 25
    #10
    nasher said:

    get labs done
    If you think there is a problem then get labs done

    Personaly I know I have calcium and vitimin D issues so every 4 or so months I am getting those tested as well as being on suppliments for them.

    yes Alan is right there are lots of other things it could be as well and its better to make sure

    for myself my vitimin D was so low they put me on mega doses for 3 months and now im just on normal suppliment doses (about 4x the Recomended daily alloance)

    if your Vitimin D is to low there is no way besided doing mega doses to fix it. If its normal and you do mega doses you will get alot of bad side effects so... get everything you can checked.

    definately get labs done
    My calcium crashed so badly after surgery I thought I was having a heart attack. Calcium controls your muscles and when you don't get enough they can't relax after contracting. My arms went rigid, I could barely open my mouth and my chest felt constricted. My husband drove me me to the hospital but after 10 miles he called 911 because he had trouble getting a response from me. In the week after my surgery, I was in the hospital twice, 2 days each time. This was an extreme case but it teaches you to not ignore symptoms. My face was tingly and felt as if it was vibrating. I just thought it was stress from the surgery and I didn't want to seem whiny. If I had called my doctor right away I may have saved myself a lot of money and fear. I am on 7200 mcg 9 days after surgery but I hope to wean this down eventually.

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