Thyroid Cancer - Surgery Dangers
Comments
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Hello, I am sorry to hear about your parathyroids. I had my total thyroid removed on May 29th due to papillary cancer. They found 3 parathyroids working. By the way I had a very experienced surgeon. The day after I had severe tentany, I would have died at home. I was in the hospital for 9 days, 5 in the ICU. My parathyroids were damaged and I needed IV calcium pushed several times along with
magnesium,VitD, and Dyazide. My calcium never went that low. I have managed over the last several months with my doc to get rid of everything but 2000 grams of calcium. My parathyroid hormone is in the lower normal range. I have had all of your same numbness, hard to breath, heart racing etc.. but what I wanted to tell you was you said your calcium is in the normal range so is mine and if I had continued to take all the high doses of everything you surpress what you have left for parathyroids. People can function with not of of their parathyroids do you have any working? Maybe they are supressed from all the meds. It is horrible to lower your meds when you feel this way, but it takes a few days and I feel a little better. My doc told me I will always need calcium, but you don't want your parathyroids not to work on their own becuase you take enough calcium orally. Hopefully this may help you. Maybe you even feel better by now. If you want to talk my email is RJMJ4@aol.com0 -
Surgery dangersjill33 said:Hello, I am sorry to hear about your parathyroids. I had my total thyroid removed on May 29th due to papillary cancer. They found 3 parathyroids working. By the way I had a very experienced surgeon. The day after I had severe tentany, I would have died at home. I was in the hospital for 9 days, 5 in the ICU. My parathyroids were damaged and I needed IV calcium pushed several times along with
magnesium,VitD, and Dyazide. My calcium never went that low. I have managed over the last several months with my doc to get rid of everything but 2000 grams of calcium. My parathyroid hormone is in the lower normal range. I have had all of your same numbness, hard to breath, heart racing etc.. but what I wanted to tell you was you said your calcium is in the normal range so is mine and if I had continued to take all the high doses of everything you surpress what you have left for parathyroids. People can function with not of of their parathyroids do you have any working? Maybe they are supressed from all the meds. It is horrible to lower your meds when you feel this way, but it takes a few days and I feel a little better. My doc told me I will always need calcium, but you don't want your parathyroids not to work on their own becuase you take enough calcium orally. Hopefully this may help you. Maybe you even feel better by now. If you want to talk my email is RJMJ4@aol.com
I had my total thyroidectomy due to Papillary Carcinoma in Jan of this year (2011), I had one parathyroid removed...I have had 2 hypo calcemic seizures one right after leaving the hospital and one in March, both were pretty severe from what the ER docs have told me. IE: facial distortion, inability to communicate, hands and feet contractures to the point of almost total paralysis and LOTS of PAIN. i am still on massive amounts of calcium and vit D, every time I start to wean off I get the numbness, tingling, heart racing and anxiety of having another seizure, in which you are fully aware of whats going on but unable to communicate it..ITS SCARY! Has anyone else ever experienced this? I also have MS and am wondering if this may have anything to do with the severity of the symptoms. None of my docs know the answer, its just strange because even during the seizures my calcium levels are only moderately low...Any ideas?0 -
did they tell you
Did they say why they removed the parathyroids?
on my surgeries (over 1 year ago) they managed to remove 1 parathyroid on each side. I still have 2 functional parathyroids but yes i need to watch calcium and vitamin D levels.
How large of calcium and Vit D doses are you on?
Cut and paste time
--- From http://www.parathyroid.com/ ---
What's New? A New Clinical Trial of a New Drug... ?
There is clinical trial of a new parathyroid drug (it is actually part of the PTH molecule) that is being tested in people with hypoparathyroidism. This study is being conducted by friends of ours at the National Institutes of Health (the NIH) in Washington, DC. If you have hypoparathyroidism you should contact them to see if you qualify for their clinical trial of this new drug. If you click on these two links you can read more about the study and contact our friends Dr Rachel Gafni and Dr Michael Collins to see if this trial is appropriate for you.
www.hypoparathyroidstudy.com or www.hypoparathyroidstudy.org
The home page lists the eligibility criteria--it helps determine who can enter the trial. In short, the study is looking at the skeletal effects of PTH 1-34 replacement therapy in adults with hypoparathyroidism. They will receive PTH therapy for up to 5 years and undergo two iliac crest bone biopsies. The theory is that taking some of this PTH will help prevent some of the bone problems that is commonly seen in patients who have no parathyroid hormone. When you contact them, tell them we said "hello!".
------ More from same site -----
How Hypoparathyroidism Affects Patient's Lives
Calcium and Vitamin D Requirements.
Patients who have had all of their parathyroid glands removed or destroyed will require high doses of calcium and Vitamin D every day for the rest of their lives. Almost all patients in our study are required to take 4 or more calcium pills per day. Two-thirds (67%) have to take 5 or more calcium pills per day, and 25% have to take 8 or more calcium pills per day. Almost all patients take at least 2 Vitamin D pills per day, with 1/3 taking 3 or more per day. Thus, most patients who have hypoparathyroidism must take 8 or more pills per day in order to carry on the daily functions of life.
Despite taking these pills, 45% of patients say they still get symptoms of low calcium at least once per day. The most common symptoms reported by these patients are: fatigue (77%), hand cramps (68%), mental confusion (43%), and anxiety/fear (36%). One third of patients state that they get these symptoms once or twice per week, while only 5% say they rarely or never get these symptoms.
Seeing Doctors for Ongoing Care
Less than 10% of all patients with hypoparathyroidism say their disease is managed well enough that they never have to go to the emergency room to receive IV calcium. Almost half of patients make one ER visit per year, while 25% make 3 or more ER visits per year.
Having hypoparathyroidism is associated with a dramatic increase in the number of doctor visits per year. Only 20% said they were not referred to a new doctor to help manage the problem, while 30% said they have 3 or more NEW doctors that they have seen to help manage this problem. Importantly, 61% said that even their endocrinologist doesn’t understand their symptoms fully, and state that their doctor is often more interested in their lab (calcium) values instead of how they actually feel. One third of patients with hypoparathyroidism are now required to see an endocrinologist every 1-2 months, one third see their doctor every 3-5 months, and one third see their doctor every 6-12 months. Two thirds of patients have to get their blood calcium checked every 4 months or less; one third gets their blood tested every month.
------ Last section -----
Summary of Surgeon-Induced Hypoparathyroidism
Surgeon-induced hypoparathyroidism is a serious medical condition that is life-long. Patients with hypoparathyroidism are required to take lots medications, yet most of them continue to get symptoms of low calcium daily or weekly. Hypoparathyroidism takes a serious toll on the interpersonal lives of these patients at home and at work, and has significant costs associated with multiple doctor visits and lab tests.
Surgeons who perform more than 150 thyroid/parathyroid operations per year are extremely unlikely to cause hypoparathyroidism, while those that perform fewer than 20 of these operations annually have a 10% chance of causing this or another serious complications. Surgeons who perform less than one thyroid/parathyroid operation per month have a risk of causing permanent hypoparathyroidism nearly 1000 times higher than the few elite surgeons who perform over 500 of these operations per year. Patients usually do not ask their surgeon about his/her experience, and when asked, surgeons almost always exaggerate their expertise, with half of the surgeons exaggerating the number of these operations they perform by more than two fold.
Reducing the incidence of hypoparathyroidism lies in the hands of the patients. Few surgeons will refuse to perform an operation that is referred to them because they feel that they lack the experience to to a good job. Patients must be educated about hypoparathyroidism as a life-changing complication PRIOR to undergoing surgery on their thyroid or parathyroid glands. Going to the “local surgeon” that your doctor sent you to is often not the best choice. Patients must check on the qualifications and experience of their surgeons if they expect the lowest possible complication rates. Having a nice diploma on the wall isn't enough! Patients must be informed and must take charge. Patients must ask hard questions of their surgeons or the consequences could be life-changing.
----------
So yes, choosing your doctor can be important... the doc I had normally did 1-2 thyroid surgeries a week and was the surgeon who did all thyroid surgeries at the hospital I went to except emergency surgeries... Yes i did check my surgeon out before hand.
Remember you can also normally find out a lot of information about your surgeon online.
I also recommend checking with past patients to see if they had any problems.
The only reason I lost 2 of my parathyroids was because they were actually in the middle of the thyroid tissue and was unable to be separated from the thyroid and still function.
Also I recommend the www.parathyroid.com web site for anyone who has parathyroid issues
Craig0 -
Calciumnasher said:did they tell you
Did they say why they removed the parathyroids?
on my surgeries (over 1 year ago) they managed to remove 1 parathyroid on each side. I still have 2 functional parathyroids but yes i need to watch calcium and vitamin D levels.
How large of calcium and Vit D doses are you on?
Cut and paste time
--- From http://www.parathyroid.com/ ---
What's New? A New Clinical Trial of a New Drug... ?
There is clinical trial of a new parathyroid drug (it is actually part of the PTH molecule) that is being tested in people with hypoparathyroidism. This study is being conducted by friends of ours at the National Institutes of Health (the NIH) in Washington, DC. If you have hypoparathyroidism you should contact them to see if you qualify for their clinical trial of this new drug. If you click on these two links you can read more about the study and contact our friends Dr Rachel Gafni and Dr Michael Collins to see if this trial is appropriate for you.
www.hypoparathyroidstudy.com or www.hypoparathyroidstudy.org
The home page lists the eligibility criteria--it helps determine who can enter the trial. In short, the study is looking at the skeletal effects of PTH 1-34 replacement therapy in adults with hypoparathyroidism. They will receive PTH therapy for up to 5 years and undergo two iliac crest bone biopsies. The theory is that taking some of this PTH will help prevent some of the bone problems that is commonly seen in patients who have no parathyroid hormone. When you contact them, tell them we said "hello!".
------ More from same site -----
How Hypoparathyroidism Affects Patient's Lives
Calcium and Vitamin D Requirements.
Patients who have had all of their parathyroid glands removed or destroyed will require high doses of calcium and Vitamin D every day for the rest of their lives. Almost all patients in our study are required to take 4 or more calcium pills per day. Two-thirds (67%) have to take 5 or more calcium pills per day, and 25% have to take 8 or more calcium pills per day. Almost all patients take at least 2 Vitamin D pills per day, with 1/3 taking 3 or more per day. Thus, most patients who have hypoparathyroidism must take 8 or more pills per day in order to carry on the daily functions of life.
Despite taking these pills, 45% of patients say they still get symptoms of low calcium at least once per day. The most common symptoms reported by these patients are: fatigue (77%), hand cramps (68%), mental confusion (43%), and anxiety/fear (36%). One third of patients state that they get these symptoms once or twice per week, while only 5% say they rarely or never get these symptoms.
Seeing Doctors for Ongoing Care
Less than 10% of all patients with hypoparathyroidism say their disease is managed well enough that they never have to go to the emergency room to receive IV calcium. Almost half of patients make one ER visit per year, while 25% make 3 or more ER visits per year.
Having hypoparathyroidism is associated with a dramatic increase in the number of doctor visits per year. Only 20% said they were not referred to a new doctor to help manage the problem, while 30% said they have 3 or more NEW doctors that they have seen to help manage this problem. Importantly, 61% said that even their endocrinologist doesn’t understand their symptoms fully, and state that their doctor is often more interested in their lab (calcium) values instead of how they actually feel. One third of patients with hypoparathyroidism are now required to see an endocrinologist every 1-2 months, one third see their doctor every 3-5 months, and one third see their doctor every 6-12 months. Two thirds of patients have to get their blood calcium checked every 4 months or less; one third gets their blood tested every month.
------ Last section -----
Summary of Surgeon-Induced Hypoparathyroidism
Surgeon-induced hypoparathyroidism is a serious medical condition that is life-long. Patients with hypoparathyroidism are required to take lots medications, yet most of them continue to get symptoms of low calcium daily or weekly. Hypoparathyroidism takes a serious toll on the interpersonal lives of these patients at home and at work, and has significant costs associated with multiple doctor visits and lab tests.
Surgeons who perform more than 150 thyroid/parathyroid operations per year are extremely unlikely to cause hypoparathyroidism, while those that perform fewer than 20 of these operations annually have a 10% chance of causing this or another serious complications. Surgeons who perform less than one thyroid/parathyroid operation per month have a risk of causing permanent hypoparathyroidism nearly 1000 times higher than the few elite surgeons who perform over 500 of these operations per year. Patients usually do not ask their surgeon about his/her experience, and when asked, surgeons almost always exaggerate their expertise, with half of the surgeons exaggerating the number of these operations they perform by more than two fold.
Reducing the incidence of hypoparathyroidism lies in the hands of the patients. Few surgeons will refuse to perform an operation that is referred to them because they feel that they lack the experience to to a good job. Patients must be educated about hypoparathyroidism as a life-changing complication PRIOR to undergoing surgery on their thyroid or parathyroid glands. Going to the “local surgeon” that your doctor sent you to is often not the best choice. Patients must check on the qualifications and experience of their surgeons if they expect the lowest possible complication rates. Having a nice diploma on the wall isn't enough! Patients must be informed and must take charge. Patients must ask hard questions of their surgeons or the consequences could be life-changing.
----------
So yes, choosing your doctor can be important... the doc I had normally did 1-2 thyroid surgeries a week and was the surgeon who did all thyroid surgeries at the hospital I went to except emergency surgeries... Yes i did check my surgeon out before hand.
Remember you can also normally find out a lot of information about your surgeon online.
I also recommend checking with past patients to see if they had any problems.
The only reason I lost 2 of my parathyroids was because they were actually in the middle of the thyroid tissue and was unable to be separated from the thyroid and still function.
Also I recommend the www.parathyroid.com web site for anyone who has parathyroid issues
Craig
Craig, I know you're aware of this because I found out about it from you.
You shouldn't take Calcium within 4 hours of Synthroid or Levothyroxine. There's a chance the Calcium will interfere with the function of the replacement hormone. This is clearly written in the replacement hormone drug instructions, yet I wasn't warned by any of the doctors I saw immeadiately post surgery and I was on Calcium for about two weeks post surgery. I didn't know about this until I wasn't taking the Calcium anymore.
My mom is also on replacement hormone because of Hashimotos. She is also taking various other drugs as well. She takes the Levothyroxine at 7 am and the rest of her drugs she takes with lunch. She's very careful to keep all other meds and/or vitmain supplements completely seperate from her Levo.
Alan0 -
CalciumBaldy said:Calcium
Craig, I know you're aware of this because I found out about it from you.
You shouldn't take Calcium within 4 hours of Synthroid or Levothyroxine. There's a chance the Calcium will interfere with the function of the replacement hormone. This is clearly written in the replacement hormone drug instructions, yet I wasn't warned by any of the doctors I saw immeadiately post surgery and I was on Calcium for about two weeks post surgery. I didn't know about this until I wasn't taking the Calcium anymore.
My mom is also on replacement hormone because of Hashimotos. She is also taking various other drugs as well. She takes the Levothyroxine at 7 am and the rest of her drugs she takes with lunch. She's very careful to keep all other meds and/or vitmain supplements completely seperate from her Levo.
Alan
My surgeon was amazing and left all my parathyroids, which are functioning just fine. My doctor also told me NOT to take calcium within 4 hours of taking my Levoxyl, which I don't. My problem is I now forget to take my calcium many times because of this, I just forget to take it at night, but I'm trying to be better about it.
I still have numbness in my hands and feet, sometimes severe pain, can't feel three fingers in my hand and it takes forevere to get the feeling back. The funny thing is I've mentioned this to my doctor but he has never said it may be due to low calcium.0 -
CalciumBellsAngel69 said:Calcium
My surgeon was amazing and left all my parathyroids, which are functioning just fine. My doctor also told me NOT to take calcium within 4 hours of taking my Levoxyl, which I don't. My problem is I now forget to take my calcium many times because of this, I just forget to take it at night, but I'm trying to be better about it.
I still have numbness in my hands and feet, sometimes severe pain, can't feel three fingers in my hand and it takes forevere to get the feeling back. The funny thing is I've mentioned this to my doctor but he has never said it may be due to low calcium.
Mine also preserved all my parathyroids. At first he wasn't sure what was going on, he only found three and thought one might be in one of the specimens he removed. The pathology showed no parathyroids so apparently I only had three to begin with.
I did have a marginally low blood calcium level post-surgery and was on 600mg Calcium for a week until a blood test showed I was OK. I never showed any symptoms. None of my doctors warned me about calcium and thyroid replacement hormone. I didn't find out until afterwards. I believe the instructions say "may interfere", so perhaps there was no harm done.
Have you talked to your doc about your blood calcium levels? Maybe he's already checked this and that's the reason he doesn't suspect a calcium problem.
Alan
====
Historical note: Before it was realized iodine was necessary for thyroid health. Surgery was used to treat thyroid goiter and initially some surgeons removed the parathyroids as well. They seemed to be part of the thyroid and no one knew what their function was. When the patients who had their parathyroids removed died soon afterwards, this practice stopped. Makes me thankful medical science has progressed as far as it has.0
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