I had a total thyroidectomy 10 weeks ago. I was taken back to the hospital 2 days post surgery because of critally low calcium (tetany, etc). I was very sick. The next week calcium went critically high. Hopefully, I am fully recovered from this! The problem is finding the right dose of Levothyroxine. I was initially placed on 150 mcg (way too high). I was taking 75 mcg at some point and due to my symptoms the Dr. thought I was hypo. TSH came back 0.88 and T4 was 1.22. He increased my dose to 88 mcg due to T4. I was feeling somewhat hyper on 75 mcg and now I am feeling even more hyper on 88 mcg - heart palpitations, shortness of breath upon exertion. However, the MD said that if I was showing hyper symptoms after 2 weeks he would back down. He said based on my weight I should be on 90 some mcg. He said that apparently I do not require alot of thyroid hormone. I am having the following symptoms: severe muscle aches, fatigue, headaches, dizziness, nausea, muscle cramps in feet and lower legs, heart palpitations, cold one minute and hot the next, fatigue/winded on exertion, constipation (could be coming from calcium) as I am still taking 1000 mcg per day. I feel so bad that I don't think I can go on feeling like this. I suspect I am not converting T4 over to T3. I am going to ask my MD if he will try me on some T3 and see if it helps. Has anyone else experienced anything like this? I would have never had the surgery if I had known I would feel like this. Hurting in NC. Please help.
Wow - sorry you are having so many problems after your surgery. Did they take any of your parathyroid glands??
I had one removed with my thyroid and I had similar symptoms. They had to put me on IV calcium in the hospital after I started cramping so strongly I thought I was having a major reaction.
Ask your doctor to check your calcium, potassium, and sodium levels.
Also, don't take your synthroid at that same time as your calcium - they bind together and prevent your body from absorbing them. I take synthroid in the morning and calcium/magnesium/zinc in the evening.
I'm not a doctor but have experienced and researched much of this. The following symptoms sound like parathyroid problems (calcium/potassium absorption): severe muscle aches, muscle cramps in feet and lower legs, and possibly palpitations, fatigue and constipation.
These symptoms sound like post-thyroidectomy symptoms: definitely cold one minute and hot the next, fatigue, and possible the palpitations and constipation.
Not really sure on the headaches, dizziness, and nausea - that could be either or neither (it could also be the stress of your body trying to adjust to having it's metabolism completely messed up).
Also talk to your endo about your thyroid replacement. I had problems with thyroxine but am fine with synthroid - my mother is just the opposite. There are quite a few types of synthetic thyroid your endo can try.
Thanks for writing. I greatly appreciate it.
The surgeon inadvertantly removed about 3 mm of one parathyroid. The other 3 were fine. I went to the MD today because I was feeling so bad and they drew six tubes of blood. I am currently taking 88 mcg of Levo and my TSH was 0.25 (it dropped from 0.88 to 0.25 in 13 days). My glucose was low as well. It makes me wonder it I still don't have some thyroid tissue left. My TSH was 0.88 when I was taking 75 mcg. This dose seems very low for someone who doesn't have a thyroid. Maybe I just don't need a lot of thyroid replacement. By the way, my calcium, sodium and potassium were all within normal limits. I am careful not to take the calcium with the levo. It is amazing what you have to find out on your own after surgery. If you don't mind me asking what kind of problems did you have while taking Levo?
Thanks again for writing. You have been an encouragement.
I had a total thyroidectomy over 15 years ago. Speaking from my own experience, I know for sure that one of the possible complications of a thyroidectomy can be damage to the parathyroid glands. There are 4 small parathyroid glands of the endocrine system located behind the thyroid gland. These glands are easily traumatized when the thyroid gland is surgically removed. Sometimes they heal after awhile, and sometimes they don't due to permanent damage.
The parathyroid glands control calcium levels so that the nervous and muscular systems can function properly. If calcium is low, the parathyroids make PTH (Parathyroid Hormone) which goes to the bones and takes calcium out to put into the blood. If calcium is high, the parathyroids can shut down. Low and high calcium will make you feel ill.
The symptoms of low calcium are:
mild: tingling in hands, fingers, around mouth, and face
severe: muscle cramping, leading to tetany (severe muscle cramping of entire body), high blood pressure
The symptoms of high calcium are:
vomiting and diarrhea
dehydration and thirst
low blood pressure
seizures or coma (worst cases only)
Hypoparathyroidism is treated with calcium citrate or calcium carbonate along with Vitamin D which helps to absorb calcium. Calcium citrate is less upsetting on the stomach. Citracal is one good brand of calcium citrate. You can also buy generic brands of it. Calcium is good for your bones and prevents osteoporosis.
Symptoms of hypothyroidism are fatigue, exhaustion, feeling run down and sluggish. Other symptoms can be depression, brain fog, unexplained weight gain, dry, coarse and/or itchy skin, dry,coarse and/or thinning hair. Feeling cold, constipation, musccle cramps, and high blood pressure can also be associated with hypothyroidism.
Symptoms of hyperthyroidism are nervousness, irritability, increased perspiration, thinning of your skin, fine brittle hair, muscular weakness, shaky hands, panic disorder, insomnia, racing heart, and weight loss.
Your thyroid medication dose is still being adjusted by your doctor. Once your doctor finds the right medication and dose, you'll feel so much better. Some people don't respond well to Synthroid or Levothroid (T4 only). Taking them can also contribute to noticeable hair thinning over a period of time. There are other thyroid medications which contain T3 & T4. In fact there is even one called Natural Armour Thyroid which has T1, T2, T3, & T4 with pretty good results of well being. I, myself am going back on Armour again.
Sorry - I've been sick and away from the forum for a while.
The Levo made me shaky and I always felt cold and exhausted. Worse, my labs weren't where they should have been. The synthroid worked very well for me and most of my family. The problem with thyroid replacement is everyone is different and you will probably have to try a few different meds and a lot of different strengths before your labs are where your endo wants them to be.
As for having thyroid tissue left, my endo told me that no surgeon, no matter how meticulous they are, can get all the thyroid tissue - it is stuck to the nerves, etc. My TSH is getting very high (two years post op) and I'm going to have radioiodine treatment next month to destroy the rest of the thyroid tissue.
It took me a year and a half for my doctor to get my synthroid levels adjusted - give it time, you're body has a lot to get used to.
You said your blood sugar was low. Right after my thyroid surgery I found out that I was mildly diabetic (wasn't 6 months before). I'm not sure of the thyroid/glucose level connection but two of my sisters had exactly the same thing happen.
Spend a lot of time talking to your endo and good luck!
I am going in for a total thryoidectomy on January 17th. I was diagnosed with hypothyroidism exactly 1 year ago following the birth of my daughter. I had 7 miscarriages before we had her. Needless to say, this year has been a blur. I constantly called my endocrinologist complaining of severe insomnia, exhaustion, dry mouth...the list goes on. They would draw my labs and tell me everything is normal. They found 4 nodules in May 06 that looked benign and now they bx them and said I have a follicular neoplasm which they want to do a total thyroidectomy on. I have felt bad for so long. I'm also starting to feel like I'm having panic attacks and heart palpitations. Could be thryoid or just the sheer stress of waiting for surgery. I'm so scared that I will never feel good again. When I read these stories of how awful people felt after the surgery, I often wonder how long can this go on. My daughter, Grace, needs me and every day that goes by I feel I'm fading away. Does anyone have any good news or stories about their quality of life after surgery? Otherwise, general support is very welcome.
You might want to start a new thread as this one is so old many people who could offer you support may not see it.
I had two thyroid surgeries - each one a lobectomy for thyroid cancer. All four of my sisters and my teenager daughter have also had TTs. For each and every one of us it was the easiest surgery and recovery that any of us have experienced (and we've had a lot of surgeries).
Getting the suspicious nodules and your thyroid out will take a huge weight off your shoulders and you can begin healing and dealing with whatever they find during the surgery. My family had 4 with papillary carcinoma, other two precancerous. Two of us have gone through the radiation treatment following the surgery (RAI).
For each of us just knowing that the cancer was removed gave us the feeling we were taking charge of our health and beginning the healing process. I have two teenagers, one of my sisters has a preschooler and another a newborn. Getting the thyroids out and regulating our levels with Synthroid has given all of us the ability to cope with our jobs, children, etc.
IT DOES GET BETTER!!!
Hang in there - many of us have been through it and will be here to help you
I had a total thyroidectomy 2 years ago. They told me two of my parathyroids were saved. I went into shock from low calcium levels about five hours after my surgery. It started with tingles and itching in my face, chest and hands. After taking a short nap I awoke to find my hands clamped shut. I could stretch my fingers apart but they would immediately retract. My toes also had these symptoms. I spent 5 days in the hospital having calcium and Vit.D IV's. I gradually came to a safe level to send me home. I took 8 tums every 4 hrs to keep up my levels. I have had constant problems with tingling since my surgery. I now take 50,000 UI's of vitamin D 3X a week and 2400 mg of calcium a day. + 200 UI of D included w/ the calcium. Where does it end and what will be the long term effects of all this is my question. I hope someone who has had a similar experience will respond.
Please do start a new thread with this question about the long-term effects of calcium supplements--I'm sure there are others who would be interested (like myself!). I had a TT this July, with a very similar exeperience to yours. I was in the hospital for a week until my calcium levels were stable. Right now I'm taking 3,000 mg of calcium a day, plus the vitamin D. I feel fine, but what kind of toll is all this extra calcium taking on my body in the long run? I'm 42 years old.
I'm glad you responded. I'm 35 years old. I'm still having alot of tingles. Every time I have my calcium tested it is at a level of 8.5 but I still tingle every day. My endocrinoligist ups my intake of calcium and D but the next appt. I'm still at 8.5. It seems my body will not hold Calcium or D and it is needing more each time.
I am sorry to hear you that you are having such a difficult time. I as well had my complete thyroid removed three weeks ago and am feeling mostly the same symptoms that you are feeling. I was told that it will take between 3-6 months for our bodies to recover completely and as well it will take time for the right dosage, so hang in there, but I surely can relate and feel your pain.
Hope you start feeling better sooner than later.
Good morning my name is Nadia, i myself went through a sergry and was having the same symptoms. i tried all the up and down doses of medication and didnt felt normal again so i just stop taking the meds all together, not saying you should, but i feel a lot better just tired more frequently so i get a lot of rest when i can.
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