My wife`s parathyroid removed May 2016, she now has horrible bone pain, taking pain medicine, does not always help...Doctor ask her to wait 6 months, symptoms have not changed. It has been 6 months, PTH test 150, calcium 10.1....(2 PTH removed)....anyone similar problem?
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Had 2 parathyroid glands removed. Had recent calcium blood test and is still 10.7, Doctor put me on Sensipar to lower calcium. Have to get blood rechecked on 12/15/16 to see if pill is helping. So far with pill, I do not have much pain in left kidney area. Don't know what that was/is???
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I've learned on a personal level to skip the endocrinologist. I felt like a cash cow to this
doctor. my calcium level was at 11.1 and he wanted to watch it for another
4 months. Mostly concerned with osteoporosis and wanted to treat that more
aggressively. Made an appt. with ENT who had parathyroid surgery experience and I had
surgery just this past Nov. 4. I just had a blood test and level is 10.2 which is, to me, still
elevated but it's only been a month.
doctor. my calcium level was at 11.1 and he wanted to watch it for another
4 months. Mostly concerned with osteoporosis and wanted to treat that more
aggressively. Made an appt. with ENT who had parathyroid surgery experience and I had
surgery just this past Nov. 4. I just had a blood test and level is 10.2 which is, to me, still
elevated but it's only been a month.
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10.2 is still too high. Please contact the Norman Parathyroid Center. They have the most experience in the world
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I just had my 6 month post op yesterday. Calcium level of 10.7. I am completely unhappy about this. If they have to go take out my last parathyroid, I am going to not be happy. I had three the four removed and my thymus. I have to do a 24 hour urine collection.............
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Had 2 parathyroid glands removed, plus 2 thyroid tumors in one operation. That was end of July 2016, 3 mos. later still had calcium of 10.7 and doctor put me on Sensipar which lowered it to 9.9 which is good. Sensipar has tons of serious side-effects. Doctor said will have to be on it (very expensive) for at least 2 yrs., then review. This scares me to death, has anyone been on th
is Sensipar for high calcium?
is Sensipar for high calcium?
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Yes then I went and seen Dr Norman in Florida who found my tumor and informed me the other dr removed good glands. Finally cured!
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I had PT surgery 1/11/17 by Drs. Politz/Lopez/Parrack at the Norman Center. My disease was MISSED by my Primary since May (recommended Antidepressants) despite slightly elevated Calcium tests (mid 10's), kidney stone, dramatic decline in bone density and horrendous and debilitating symptoms. Diagnosis and plan for surgery were made in Nov. by a wonderful doctor who also felt I might have a "second syndrome".
I previously had 80% of my Thyroid removed in 1990 due to symptoms from nodules- this diagnosis took 18 mos. and examinations by a Gastroenterologist (said I should see a Psychologist), Orthopedist ( suggested Tranquilizers) and Neurologist (recommended Marriage counselor??). Prior Thyroid surgery complicates Parathyroid surgery because of scar tissue and frequently missing parathyroids (inadvertently taken out or buried in scar tissue). This can lead to many issues as the surgery is longer, very involved exploration for all 4 PT, greater chance for vocal cord damage and possible lifetime HYPOparathyroidism due to missing PTs. These risks were explained more than once and very thoroughly, as well as the fact that some of my symptoms possibly indicated a "second syndrome".
Immediately after surgery I was informed that after long exploration only 2 PTs were found, adenoma on one and a PT that was very small. Adenoma was removed and remainder of that gland was left. Cal. 9.8 Immediate concerns were that the minimal PTs I had would function/produce sufficient hormone. I was in excruciating pain, unable to swallow, speak or move my head after surgery and when I went home the next day I felt increasingly worse everyday and had additional symptoms. Saw my Primary next week for Post Op. and my blood pressure and pulse rate were dangerously high. He said he was doing a Calcium test and I asked him to do a complete Thyroid Panel (I do not know why as I never had a thyroid issue in 27 yrs). Doctor said he would do Thyroid Panel in 4 wks- my husband INSISTED that since he was doing blood work he should do it. No treatment was suggested for my pain, swallowing or other miseries. At 8:00 AM the next day the doctor's asst. calls to tell me I have severe Thyroiditis and Beta Blocker was ordered and I need to take for a month and come in for blood work. The next day I had life threatening LOW Blood Pressure and pulse rate. I was going to call Primary or go to ER at local hospital after I spoke to Dr. Politz (we have a phone consult every Fri). He told me what to do for the low BP/PR and strongly suggested I be seen, treated and followed by another doctor. Went to doctor who diagnosed PT disease the next Mon. In his office my BP/PR SOARED to dangerously high and I was put on Prednisone and a better dosing schedule of Beta Blocker. He explained this complication can be serious, required weekly exams/blood work and was a result of the extent of exploration/manipulation of thyroid in surgical area. Also, my pain, swallowing and vocal cord inflammation were due to intubation tube as well as swelling from Thyroid. I developed elevated levels of Potassium, Sodium, Iodine, SUGAR and Calcium levels went up due to Pred/Thyroiditis. Placed on a very restricted diet, NO Vitamins/Supplements/Calcium Pills. It is 3/14/17 and I have recently had a normal Thyroid test and been weaned off Pred./ Beta Blocker. My voice is 99% normal (least of my concerns) and my Cal. has been 9.8, 9.8,10.1,10.5,10.7 and last *10.4/PTH 24.6 * I realize that my levels are not totally valid as they were done too soon after surgery, during Thyroiditis and while on Pred. Many of my pre-surgery symptoms are gone or have subsided and some may resolve over time or not at all. Dr. Politz was not concerned and says that patients who had prior Thyroid surgery tend to have higher Cal. levels even after being cured ( I plan to investigate this?) I am cautiously optimistic as I seem to have normal PTH and feel relatively well. I am on a modified Calcium diet, Multi Vit. and NO supplemental Cal. BUT do not see how my bones will recover.
It has also been determined that I have calcifications in most muscles/tendons of my shoulders, neck and face and experience difficulty swallowing, frequent headaches, lightheadedness, tinnitus, pain in neck/ shoulders, swollen/tender salivary gland, intermittent throbbing pain in jaws/teeth and sporadic Vertigo. There are syndromes associated with these symptoms ( TMJ/TMD, Eagle's, Cervicogenic Headache, GPN, etc) After my blood work this week I will be seeking a diagnosis and treatment plan. They are not symptoms of PTdisease, but very likely resulted from high calcium causing calcifications ( like kidney stones, heart valves).
Sorry this has been very long maybe it will help someone else, not much info available for people who had prior Thyroid surgery, post surgery complications or symptoms that may indicate another issue. My experience(s) have taught me to be proactive in my medical care, persist, respectfully question/challenge doctors, explore options, change doctors and be my own best advocate.
FL/Grammie
I previously had 80% of my Thyroid removed in 1990 due to symptoms from nodules- this diagnosis took 18 mos. and examinations by a Gastroenterologist (said I should see a Psychologist), Orthopedist ( suggested Tranquilizers) and Neurologist (recommended Marriage counselor??). Prior Thyroid surgery complicates Parathyroid surgery because of scar tissue and frequently missing parathyroids (inadvertently taken out or buried in scar tissue). This can lead to many issues as the surgery is longer, very involved exploration for all 4 PT, greater chance for vocal cord damage and possible lifetime HYPOparathyroidism due to missing PTs. These risks were explained more than once and very thoroughly, as well as the fact that some of my symptoms possibly indicated a "second syndrome".
Immediately after surgery I was informed that after long exploration only 2 PTs were found, adenoma on one and a PT that was very small. Adenoma was removed and remainder of that gland was left. Cal. 9.8 Immediate concerns were that the minimal PTs I had would function/produce sufficient hormone. I was in excruciating pain, unable to swallow, speak or move my head after surgery and when I went home the next day I felt increasingly worse everyday and had additional symptoms. Saw my Primary next week for Post Op. and my blood pressure and pulse rate were dangerously high. He said he was doing a Calcium test and I asked him to do a complete Thyroid Panel (I do not know why as I never had a thyroid issue in 27 yrs). Doctor said he would do Thyroid Panel in 4 wks- my husband INSISTED that since he was doing blood work he should do it. No treatment was suggested for my pain, swallowing or other miseries. At 8:00 AM the next day the doctor's asst. calls to tell me I have severe Thyroiditis and Beta Blocker was ordered and I need to take for a month and come in for blood work. The next day I had life threatening LOW Blood Pressure and pulse rate. I was going to call Primary or go to ER at local hospital after I spoke to Dr. Politz (we have a phone consult every Fri). He told me what to do for the low BP/PR and strongly suggested I be seen, treated and followed by another doctor. Went to doctor who diagnosed PT disease the next Mon. In his office my BP/PR SOARED to dangerously high and I was put on Prednisone and a better dosing schedule of Beta Blocker. He explained this complication can be serious, required weekly exams/blood work and was a result of the extent of exploration/manipulation of thyroid in surgical area. Also, my pain, swallowing and vocal cord inflammation were due to intubation tube as well as swelling from Thyroid. I developed elevated levels of Potassium, Sodium, Iodine, SUGAR and Calcium levels went up due to Pred/Thyroiditis. Placed on a very restricted diet, NO Vitamins/Supplements/Calcium Pills. It is 3/14/17 and I have recently had a normal Thyroid test and been weaned off Pred./ Beta Blocker. My voice is 99% normal (least of my concerns) and my Cal. has been 9.8, 9.8,10.1,10.5,10.7 and last *10.4/PTH 24.6 * I realize that my levels are not totally valid as they were done too soon after surgery, during Thyroiditis and while on Pred. Many of my pre-surgery symptoms are gone or have subsided and some may resolve over time or not at all. Dr. Politz was not concerned and says that patients who had prior Thyroid surgery tend to have higher Cal. levels even after being cured ( I plan to investigate this?) I am cautiously optimistic as I seem to have normal PTH and feel relatively well. I am on a modified Calcium diet, Multi Vit. and NO supplemental Cal. BUT do not see how my bones will recover.
It has also been determined that I have calcifications in most muscles/tendons of my shoulders, neck and face and experience difficulty swallowing, frequent headaches, lightheadedness, tinnitus, pain in neck/ shoulders, swollen/tender salivary gland, intermittent throbbing pain in jaws/teeth and sporadic Vertigo. There are syndromes associated with these symptoms ( TMJ/TMD, Eagle's, Cervicogenic Headache, GPN, etc) After my blood work this week I will be seeking a diagnosis and treatment plan. They are not symptoms of PTdisease, but very likely resulted from high calcium causing calcifications ( like kidney stones, heart valves).
Sorry this has been very long maybe it will help someone else, not much info available for people who had prior Thyroid surgery, post surgery complications or symptoms that may indicate another issue. My experience(s) have taught me to be proactive in my medical care, persist, respectfully question/challenge doctors, explore options, change doctors and be my own best advocate.
FL/Grammie
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Just got my third lab results after parathyroid surgery in Oct, 2016. Had hyperplasia (all four parathyroid glands had tumors, and they left 1/2 of one to do what it's supposed to do which is normal procedure), but my blood calcium has been increasing from 9.2 after surgery to 9.8. I thought I was supposed to be "cured" but now am thinking this may never get better. Next blood test in four months. My endocrinologist said she couldn't do any thing else since I was "cured" after surgery. If it increases as high as some of the other posts I don't know what to do about it?
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What was the finalout come with this? I'm having the same issues. I have had 2 surgeries and still calcium is over 10.5.
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I went to the Norman Parathyroid center where the tumor was in my chest. The other surgeons had removed good glands
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Hi Grammie. Were the calcifications in your shoulder tendons and muscles, did they show up on an MRI ? I've had a shoulder MRI but they said it was normal, I'm thinking it's nerve pain and I'm going to see a neurologist. I just had 3 PT glands removed last week due to adenomas and hyperplasia. Shoulder pain still persists.
Thank you! Ilyssa
Thank you! Ilyssa
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