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EndocrineWeb Community Advice

total thyroidectomy 12/22- could use some support

From: nezavi - 4 years 39 weeks ago

Hi all, I'm new to all of this. I had a total thyroidectomy this past thursday. Great surgeon, he actually did a total parathyroidectomy on my mother last year. Everything went so well and my calcium never "dropped" so I was sent home the next morning. I'm on a megadose of calcium (3600mg) + calcitriol (.25mg) now to maintain until I have more bloodwork on Tuesday, but he said it's very very unlikely my calcium would drop. Been takin the meds of course, and I'm sure that my calcium is fine, but I'm so incredibly anxious that I keep psyching myself out and *thinking* I feel my hands tingling, or my face getting numb, but these things are not actually happening.

It's scary. My anxiety is making my recovery hell, I was fine when I was in the hospital, it just makes me so nervous to be away from doctors after this surgery and not be able to talk to anyone until Tuesday because of the holiday. I'm trembling and twitchy- both things that commonly happen to me during high stress. Bottom line, I know my calcium is fine, but I can't stop making myself crazy about it.

Can anyone offer any support? Did anyone else worry excessively about their calcium post TT? I have to admit my concern stems from my mother's surgery, because her calcium dropped to ~3, but she had her paras removed and the surgeon said he didn't even touch mine.

Help! :(

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Hi,
I had a total thyroidectomy over 10 years ago and have never had any problems with my calcium levels...I think that comes more with the parathyroidectomy like your mother had...My only problem is keeping my levels in line...I would suggest (and I am sure your doctor has told you this)that you take your levoxyl, synthroid or whatever you have been prescribed first thing in the morning always at the same time, if possible, by itself...I don't take mine with any other meds and especially with any herbs...Any kind of stress will throw my levels off...The normal range is around about 0-4...they have changed it over the last few years from 0-5 and 0-3...My endocrinologist keeps me in the bottom range of the spectrum and that is where I feel the best...I just had my TSH checked 2 weeks ago and it went from 0.67 to 4.31...But I had just gotten over a kidney stone...But I knew they were off and you will in time be able to tell when they are...Dry skin, hair falling out, can't sleep, fatigue, monthly changes, etc...just listen to your body! One other thing...don't ever let the pharmacy change your medicine from a name brand to a generic or vice-versa...My dr. is adamant about that..It is a big NO-NO...
And lastly...don't keep getting stressed...I did have them check my calcium when they did my TSH just b/c of the kidney stones thinking my parathyroid might be causing it, but it was fine...That is the first time I had in the last 10 years even thought of calcium!!! So, don't worry about it...
Just keep your mind on reducing your stress so you can keep your levels in line and get back to your normal life...
Good Luck

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Hi,
I had my TT 27 1/2 years ago and I DID have a pretty significant calcium deficit after surgery. I think I had 2 IV calcium infusions while in the hospital but I had to go back to the hospital twice within 2 days of discharge for IV calcium again. The symptoms of calcium deficiency are really easy to spot--my first symptoms were the tingling around my mouth and nose, then in the hands with lessened function of the hands. The scariest for me was on the 2nd ER visit when I lost the ability to speak--I was very aware of things around me and what was going on but my mouth drew to one side and I could not utter a sound until the IV was administered. That was about an hour after the symptoms first started. Since then though, I have been able to control my levels with supplements and even though my blood levels are always on the low side, I am doing fine. Bone density is normal also.
I don't know why you had your thyroid removed, but mine was removed due to papillary carcinoma. My biggest fear after surgery was the chance of a cancer recurrence, but I'm 28 years post surgery in July and as long as I can make sure my thyroid medicine is at correct dosing, I'm doing great.
Feel better today than I did at time of surgery in a lot of ways.
Hope this helps you a little and keep your chin up. Good luck to you.

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First of all, your mother's calcium dropped because she had her parathyroid glands removed, NOT her thyroid. The parathyroid glands control the calcium level...you should be fine. If anything, I would say the calcium level you are on is too high and probably unnecessary. I had a total thyroidectomy, partial lateral radical neck dissection and 2 parathyroid glands taken out and I am still OK with my calcium levels. Focus on recovery of YOU not your MOM - totally different surgeries!!! Good luck!

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I have a question for you...Do you have trouble keeping your levels even...Mine are off every 6 months...I feel best when my TSH is btwn .75 and 1.0...And my doctor has me on .112 W/F and .125 the other days of the week...It drives me crazy to never have them level!!! Just wondering if anyone else has this problem?

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I have it ALL the time!! I make them take blood levels every 4 weeks instead of 8 weeks and I am always right! I was down to .08 on my TSH one week, so they raised my Synthroid by 1/2 pill one day a week. Within 4 weeks, I wasn't feeling good and got blood tested again and it was up to 1.86, which was too high, so they put me down one day by 1/2 pill. Now I am just on 150 mcg 7 days a week, but haven't been feeling good at all - in the bathroom all the time, nails brittle, body ACHES and aches, and extreme agitation. Just had blood drawn today so will see what happens. I know the test results will be crazy...

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So, my TSH was up to 2.5, higher than from before I had surgery!! Now i'm on 150 mcg Synthroid 6 days/week and 225 mcg one day a week - feel better, but just got more blood word today to check Parathyroid and calcium levels...I know they will be off..I had my endocrinologist fax my Primary care doctor what my thryoid blood levels should be at - now I feel more confident with my Primary because she didn't know at all!!

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Utahgirl is incorrect, your calcium levels do plummet when your thyroid is removed it is the biggest side effect. ..mine did dangerously low. Best option is to see your dr how are you feeling now? Mine was removed 2 mths ago and I feel awful

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