I had 1 gland removed 3 days ago. I feel 100% better already. My symptoms of bone pain, brain fog, insomnia, frequent nausea and urination has all dissipated. I only had to take 2 pain pills and am now at zero pain. I was hypercalcemia for 12 years, stones 15 surgeries lithotripsy and stents. I am so happy I am healing and feeling so much better.
Dr yeh did my surgery. My health was transformed in 24 hours after surgery. What a thrill to feel good again !!! Do it!! Life changing. I had 2 glands removed 👍🏻👍🏻. What a great kind and fun Dr. !!
As a patient education professional (and someone with hyperparathyroidism), I am impressed with the outstanding communication skills of these physicians. Thank you!
Thank you! I had exactly the scenario of surgery last Thursday and went to ER Saturday morning with “symptoms” resembling low calcium. My calcium measured normal in ER. Too many videos saying I felt “great instantly”. Adjusting to normal calcium levels after years of high is not instant for me. I feel so reassured after this video because I have been regretting surgery so far, but now I am confident that it will just take time.
I appreciate that you talk about the quality or rigor of information out there. That isnt mentioned often enough when people talk about science and health especially. Thank you for admitting that not all aspects if health are fully understood. Especially conditions like parathyroid malfunction. I have all of those symptoms, but what promped us to ask our doctor about it was when we realized that these problems were getting worse no matter what we tried. We had tried so many things that normally work for most people and had tried them long enough that the doctors who had prescribed the treatments said that they were at a loss and didnt know why it wasnt helping. So we were at our wits end when we asked our new family doctor (our old one retired). He scheduled a full blood test that found really high calcium, PTH, and low vitamin D. He recommended us to an endocrinologist. Took four years of him testing me in every way to figure out what my condition was and what was causing it. Tested to see if it was secondary hyperpara or primary and had me try dietary changes and vitamin D supplements. That didnt workbafter really giving it a try for two years. Once he decided it was primary hyperpara, he recommended the most experienced surgeon in our region. Took three months to get the surgery. The surgery went well. Surgeon said he removed a nearly 3 CM long adenoma that was oressing on my vocal chords. Didnt damage my vocal chords nor any other if the many things in my throat. Maybe my situation is unusual, but after the medicines they gave me during my surgery and overnight stay in the hospital wore off, my throat is now very sore. I took the hydrocodone they prescribed for three days but switched to tylenol with codene after that because I was getting constipated. That fixed the constipation, but now my neck is much more sore. I took all of my antibiotics as directed and have tried to keep up the breathing exercises they had me start in the hospital, but Im still coughing. Nine days after surgery Im still coughing but at least the phlegm isnt as thick, yellow or plentiful anymore. I hope the coughing quits soon. It really hurts to cough. I am 50, but Ive never smoked anything and rarely drink. I did have farmers lung 17 years ago when I lived in a very humid place and my apartment had moldy ceilings and walls that leaked. Maybe thats part of it. I live in the desert now and its a nice hot dry summer that Im recovering in and our current house tested negative for molds. I still have aches, sore muscles and joints, insomnia, mental fog and anxiety but they are gradually getting less severe. My itchiness isnt as bad. It was starting to be as bad as chickenpox but without the sores before surgery. Four days after surgery, I had numbing in my hands, feet and face, so I took the calcium supplements they prescribed. It seemed to help. My fingers till feel numb and tingly at times asxthey did before surgery, but not as bad now. The biggest issue is trying to keep the stitches dry and clean without touching them. Its very hard, especially when I get sweaty. I am getting better gradually. Im not finding recovery as easy as some say it was for them. When I get discouraged, I remind myself that Im having an easier time of it than people did back when they had to cut a much bigger inscision, or even before that when they didnt know how to do surgery for solving this illness.
I'm 38, I have had strange symptoms for years now (I estimate 15 years) and today I finally got a diagnosis. Depression, high blood pressure, frequent urination, kidney stones, extreme fatigue, I figured I'd be dead by the time I'm 50. After all these years of wondering what the #$%^ is wrong with me, this diagnosis and knowing that I am not a hypochondriac (which my [soon to be former] psychiatrist and my family was convinced of) is like winning the lottery. I'm looking forward to getting rid of the @#$%ing tumor and starting a new chapter. Sorry doc, I don't need anti-depressants, it was a tumor. The endocrinologist even said "you have had this tumor for a loooong time". He also said that if someone with normal calcium levels were to suddenly have my levels, they'd either be in a coma or drop dead.
Yes this! Been feeling like I been going crazy for years. When they finally told me they found something in my CT results, I said finally getting some answers and I’m not crazy.
I'm an 83 year old post-operative parathyroid patient. My pre-operative calcium levels never exceeded 11.0 but were consistently between 10.2 and 10.5 (normal?). Mypost-operative calcium levels were 9.6 to 9.8 for about five years. Years six and seven have seen rather more fluctuations in calcium level and recently 11.3 was recorded. I visited a endocrinologist/surgeon this week and was told that I DO NOT have parathyroidism; that opinion based exclusively on calcium and PTH numbers. Four of my last six blood tests recorded levels of 10.0 + and some endocronolists suggest that for a person my age the numbers should be much lower with the inference that parathyroism cannot be ruled out simple because some test levels are below 10.5. This video was excellent and I commend Drs. Livhits and Yeh for their outstanding presentation! I would like to read more about the variations of calcium levels within different age groups and the relationship between calcium levels and symtoms.
Thank you for your great informative video. I had a minimally invasive parathyroid surgery 3 years ago. Two very large parathyroids were removed and a large thyroid nodule as well. This was done in Tampa by Dr Norman and his surgery is same as yours. I had hyperparathyroidism for at least 10 or 13 years before it was diagnosed and I suffered terribly..had something like 18 out of 20 symptoms. I noticed improvement almost immediately after surgery especially in brain fog, confusion, crabbiness, and forgetfulness. My muscles still ache more than they should and I have a bad hip that hasn't gotten much, if any, better. But my numbers are great and I feel so much better after the surgery than I did for years and years before. I lost so much of my life to this disease not knowing what was wrong with me. I urge everyone with high calcium, low vitamin D, and high PTH to go to an endocrinologist and if you have, or even think you have, hyperparathyroidism DO NOT wait for years. One year of waiting to see if your numbers change is almost too long. Go, go now. Thanks for spreading the good word about hyperparathyroid surgery.
I had a parathyroid gland removed about 3 weeks ago and have muscle and joint pain really painful.what can i do? My doctor never put me on any vitamins.
@@melissamincer7448 I was under 3 hours and to be honest it wasn't bad at all. Just a sore throat and went home! 3 days ago surgery and today I feel like a complete new person!
I just had a parathyroidectomy surgery last Friday by Dr. John Kairys at Thomas Jefferson Hospital in Philadelphia, PA. I can say I had a wonderful doctor and I didn't notice the signs and symptoms of the disease until my primary doctor looked at my lab results for high calcium. I've been recovering now for a week and the fogginess and forgetfulness aren't as prevalent. According to my doctor, it looks as though I had this condition for about 4 years and because I am 50 years old I actually thought my symptoms were signs of aging. I am grateful to my doctors for catching this disease. I still feel like my body is trying to adjust to the changes, but otherwise than that, I feel pretty good :)
I live in Delaware County. I just had routine blood tests showing elevated calcium and have been referred to an endocrinologist. The doctor is booked until September. I might check out Jefferson now.
Was diagnosed with primary hyperparathyroidism and had surgery to remove the rt parathyroidectectomy done on thursday the 9th.was home on 10th feeling better. Pain is not that much. Thanks for your teachings.
Most. Patients like me, wait years for right diagnosis. Finally. Parathyroid surgery next month. Get the right blood draws. From an endo specialist, not yr family dr. I learned. Blessed
Just watched your video. Had my surgery yesterday and I'm pretty sore. It was good to be reassured at this point that there are "bones and stones" long term benefits from parathyroidectomy. Also hoping that my fatigue gets reduced as well as my frequent urination and other symptoms. Your presentation was very clear. Thank You both!
Can I ask you a question? I was told to shower with a special soap , no lotions or makeup, don’t shave legs or anywhere on my body before surgery. 😳. Huh? Do they put a catheter in place? Why all the precautions? This seems extreme. Any advice you can give would be appreciated. 😅
I just watched this presentation . I am having parathyroid surgery at UCLA by Dr. Sercarz in 2 weeks. This video is so informative . I am so happy I found this .. Thank you for. doing this presentation.
It took FOREVER to get a proper diagnosis. 3 Decades. I'm now facing the removal of all 4 PTGlands. I've never heard of anyone else having that many taken out! It worries me a bit... Glad to hear so many of you had great results!!
Excellent ..thank you so very very ! My wife just had Parathyroid Adenoma surgery at Duke .. the entire experience was superb and she is doing exceedingly well. Your discussion clarified and amplified many of our remaining questions and observations .
If you are not feeling better, I would ask your doctor if the surgeon inspected ALL FOUR of your parathyroid glands for tumors and did not just remove the adenoma/tumor that showed up on the scan. PT scans are notorious for failing to show all tumors and experienced surgeons know to check all PT glands for signs of disease.
I pray for your betterment. Get well soon. Get rest. My mother also is going to take this surgery. Currently been looking at this comment to ease my mine. Hope it will help.
@@pattyclark5492 They did not check all 4 ☹ I've requested for them to keep checking my blood and the numbers keep increasing but since they're still falling in the normal range it doesn't seem like they want to do anything about it. I tried to explain to them that with them removing a 4 cm tumor off the one the other 3 were dormant and it's going to take a little bit for them to overact but they don't listen to me . I've been trying to find another doctor but because my levels are still considered in the normal range it doesn't seem like anyone wants to do anything. I feel worse now than I did before my surgery 😭 I highly recommend everyone to make sure your surgeon checks all 4 parathyroid glands and I requested my surgeon to do that but she didn't listen to me because she felt as though as long as they check my blood during my surgery and it drops at least 50% then they know they got everything which I don't think is the case. If your surgeon says they only check your blood and not all 4 find another surgeon that will check all 4 glands.
@@user-gs1sh7tz1g thank you so much ❤ make sure your mom has an agreement with the surgeon to check all four parathyroid glands and not just go by testing the blood during a surgery. It seems like if a surgeon does that it will be a successful surgery
I recently had parathyroid surgery. When I was researching my calcium level pre op I read that over 40 years of age a calcium of 10 or above is considered elevated. I wish you had addressed that on the video because a lot of doctors don't know that.
Yes! My two doctors blew off my 10.7 calcium level in 2020 and then 10.4 in 2023. I turned 60 so they just assume it’s post menopause These doctors know I was feeling awful and had osteoporosis/hypertension and is why I asked for bloodwork. Then I showed my recent 2023 calcium level to my son who is in his first year of residency. He advised I get a PTH level. Sure enough it was high. So it’s pretty obvious I have a parathyroid tumor that the “seasoned” doctors missed. I asked one to include “all the thyroid bloodwork.” He did all the thyroid ones BUT the parathyroid level. I assumed all were done. Testing scans is tomorrow. Yes, I’m anxious.
Right! Mine didn't and so I walked around for 2 years or more with a tumor. When I asked her after my surgery why she didn't notice the high calcium levels she said "it didn't raise a red flag for me." Yet my phosphorus was low and a particular enzyme was off. I did the research and took myself to Dr. PRITBITKIN at Jefferson in PA. Wonderful man and surgeon. Tested me and performed the surgery. I advise anyone to look at your own bloodwork. Don't wait for the doctor.
I just had surgery yesterday. Went in thinking it only one. A little over 3 hours later they had removed 3 of mine. My PTH level was 491 at the start of the operation.
I had a bad parathyroid removed last October, was the size of an almond. It's been almost 6 months & finally about a month ago the EXTREME fatigue is gone. My calcium was so high before surgery...12.2. Surgery was a breeze. Was back to work in 2 weeks.
I had hyperpathroidism with hypercalcema.. over 11 calcium and up to 177 pth. It took 3 ultrasounds and 3 scans.. last one laser to find the adoema.. which was encased inside my thymus in the upper chest area. They never did find the other 3. I didn't like that I have the large incision surgery instead of the inch or inch and a half incision. I'd heard that even when a parathyroid migrates downward behind the clavicle that it can still be retreived using the inch or inch and a half surgical incision. The incision I got was from the typical large incision from clear back to 1925. What I read said it was imparitive to make sure you've got a great surgeon who specializes in hyperparathyroidism. I was lucky to have a great general surgeon, but had assumed I was getting a specialist by going clear to Mayo Rochester Clinic instead of local surgeons.
Unfortunately I consulted with these Docs and was extremely disappointed. They considered 1 lab they drew and dismissed me with, “Sorry you feel so bad, but we do not see you need surgical intervention, and it’s best not to look up all your symptoms on the internet and feel you Have Hyperparathyroidism “. In other words suggested I was trolling for symptoms. When you are as sick as you are with this disease, the LAST thing you need is to be accused of making up symptoms. I have 13 years of intermittent high calcium, but my PTH remains in the normal range. I had a vertebrae compression fracture for no reason last year, have developed a kidney stone, high blood pressure, increasing osteopenia, then ALL the other symptoms to the point of nearly being bedridden. So when they only considered one blood test and not my long history, insinuated my symptoms were in my head...............consulting them was beyond disappointing.
I'm so sorry to hear that😦I hope that you feel better now . I'm 18 and I went through pretty much the same thing because the doctor I went to see didn't listen to me and told me that my symptoms: bone pain,heart palpitations,HAIR fall,loss of appetite... we're caused by stress even without giving me any exams and she got so mad for some reason when I went to do a blood test by myself for some reason😐 but this blood test pretty much saved me and I'm so glad that I found an awesome doctor that diagnosed me and I did a parathyroidectomy a month ago and everything is fine now for the moment 😊I have a check up soon but I'm so thankful when I think that a month ago I wasn't able to do the simplest things like:walk, swallow,wash my hair by myself so I'm positive that I won't need to do the surgery again🙏
This is not a good doctor. It is not " all in your head" my doctor saw levels of increased levels of calcium in my blood and sent me for a special ultrasound of parathyroid gland and a dexa scan for my bones. Go to another doctor please. My surgery is in a few weeks to remove the tumors. U will feel so much better being in the hands of a good doctor. Let me know when u go for surgery! My thoughts are with you.
Went to ER after second parathyroid surgery. I had ALL the symptoms of low calcium and test said 4.8 level and they did NOTHING for me. No calcium, no food, no drink. Laid on a hard bed for 8 hrs, checked me for drugs and stroke and billed me $8,000. I still have a surgical clip left in my throat years later and so start pain in my throat. It has calcified over, but Vanderbilt was a nightmare.
I just had a removed of 2 abnormal parathyroid glands. And with 12 hrs of that surgery. I had to be rushed to er for bleeding from clots around thyroid under my skin. And bleeding from busted blood vessel on my thyroid. Second surgery to stop bleeding
My mother, may G_D rest her soul, was a RN and I recall she told me that a hip fracture was the most painful type of fracture, and the hardest to treat.
I will get parathyroidectomy for the next 3 day because I have already osteoporosis and broken femur. I experience hypercalcemia, hyperphosphatemia, hyperparathyroid hormone (1900), low vitamin D, because I have been long in dialysis (for about 12 years). Wish me luck..
I had it now for 11 years. The doctors labeled me hyperkondric (imagine the pain), even put me for some time in a mental hospital, cause they said i lied about my experience about pain, loss of energy, muscle and stomic pain. Until i went to a private hospital for examination. Who found it out. Unlucky i live in socialist denmark, and there is no money to make my operation. The doctors say, cause ive had it for so long, i will die with a couple of years. Im 48 now
I'd love if you did a webinar about how to improve your bone health naturally. It would be very helpful if you could compare all of the different medications and natural remedies for improving bone strength and reducing the likeliness of fracture. To give you background I'm a 45 year old female who has had elevated blood calcium for years in the 10 sometimes 11s and doctor after doctor has said we'll watch it (until I wasn't having any more of that nonsense). My mother had a genetic test that showed a gene that "could possibly have a link to elevated blood calcium" the doctors were not definitive on this. My mother also had blood calcium that was sometimes high. My pth is on the lower side of normal. I have a history of smoking, I'm in perimenopause. After insisting on a bone density test I was told I have osteoporosis in my spine and osteopenia in my hips. I've always had a healthy diet. For the most part I have maintained a healthy weight (5'.2" 92- 148 lb (105-112 lb was my norm)). Occasionally being underweight and once being slightly overweight due to undiagnosed bacterial overgrowth of candida, sibo and leaky gut. I feel like my doctors have hastily jumped to the conclusion that I have fhh. It would not explain my osteoporosis/ osteopenia which seems odd in a woman of my age and with my dietary history. No one in my family has ever had osteoporosis to the best of my knowledge. I'm reluctant to take medications, because though they help with bone density, they also make your bones more brittle. I have found no research that shows that the medication produces a positive outcome meaning that it reduces fracture rate. I think I may have misdiagnosed parathyroid tumors and would appreciate your thoughts on this.
Excellent presentation doctors! Thank you for taking the time to clearly explain this condition. I wish I had found your video five years ago.... My quality of life has significantly declined to the point that I have Osteoporosis, bone pain, depression and anxiety, which my doctors never were able to find the cause, even though I was so proactive in asking questions, etc., especially because my osteoporosis was so advanced when I was 55. Recently, My endocrinologist prescribed Timlos and that’s when my high calcium levels were addressed., as well as my parathyroid hormone levels. I will be having a ct scan to determine if I have an adenoma and if surgery is needed. Your video is making me so hopeful and optimistic that I can get my life back! On3 question, do you think that I should take Timlos injections after surgery to improve bone density? I’d prefer not to take it because these are daily injections for two years. Perhaps the osteoporosis will be reversed after surgery.... I pray for a miracle. Thank you so much!
Anyone else feel like this talked them out of getting this surgery? I had already opted to monitor my hyperparathyroidism, and the information given here reaffirms my decision.
Sifu don't! If you have HPT, elevated PTH levels and or Calcium levels -even if they're high/ 'normal', get the procedure from the best, most experienced surgeon you can find. This video sucks. Trust me man. My imaging didn't show which one was bad, I was hesitant, but they 'have' to check all 4 if it's a good surgeon. That told me right away these guys lack knowledge and experience, afraid to step on toes at cost of people watching to have failed surgery? Have had it for years and the symptoms get worse. Even switched surgeons prolonging the operation but it was for the best. There's good & bad surgeons out there for any procedure and this one needs someone with lots of experience. A ton of research on this prompted me to change surgeons. Covid delayed it more and I just had it this morning. That's only reason why I watched this... and after all the previous research, videos etc.. this video is NOT one to base any judgement on. Sifu teaches mind/body.. they both suffer loss with this condition. Your call
The video emphasized the importance of surgical treatment of hyperparathyroidism. It will not get better by itself. It will get worse, your osteopenia will turn to osteoporosis, etc. There is no reason to monitor.
Wayne-O I appreciate the information. I consulted an endocrinologist in Seattle and even he said that it could lead to osteoporosis in my 80s. Not many people in my family even make it to their 80s. My doctor told me that some people with high calcium levels (my PTH level is normal - calcium is at the high end of normal) are completely asymptomatic, and so far (knocks on wood), I am one of those. I will get it checked every year and may reevaluate if things change. It looks like it’s been a few months since your surgery, might I ask for a quick review of your experience and recovery?
@@LastSifu Look up FHH. Familial hypocalciuric hypercalcemia. Did your endocrinologist exclude that? Also, Calcium and phosphate are very tightly regulated electrolytes. 10.3 is normal Ca, 10.6 is already hypercalcemia.
Was just told today that my parathyroid is low, waiting to hear from a consultant now,, I also had my thyroid gland removed 10 years ago, anyone else like this thanks😱
My neighbor, a thin, fragile elderly woman, had a fall in the hallway of her apartment on the way to her bathroom. Sadly, died 3 days later in hospital.
I also enjoyed your informative video. I had a successful parathyroidectomy at the Normand Center two months ago. I feel like Mar L below who feels strongly about encouraging people to act now. They surmised I had had hyperparathyroidism for 5 years. I had 3 tumors removed (one that was producing 1034 pth by itself). What if they had only checked one gland? How can you get out the word to surgeons that it is NOT okay to not check all four glands? (Especially when your data shows no differences in prevention of fractures later on when all the tumors are not removed) How can you get general practitioners to recognize calcium levels over 9.5 are NOT something they should watch for a while. Blood test reports do not raise a red flag to a calcium level that high. My rheumatologist was the one who discovered my problem. I had the psychological issues and yet my psychiatrist did not suggest getting a blood test that could have caught this. How many people are suffering from hyperparathyroidism symptoms and will suffer from long term results of non diagnosis because doctors don't recognize the disease? I have forgiven the various doctors through the years who never caught the disease since the emotional symptoms can be attributable to a wide variety of illnesses. I sure do wish though that some doctor could have picked up on it sooner. The quality of life after surgery improves SO dramatically!!
I told her I was starting to feel unmotivated brain fog, forgetful. She checked my thyroid...subclinical, take Synthyroid,, Told her I was constipated all the time, well, its not the medication, that should make you better...eat more fiber,,, My back pain had reached epic proportions,,, xray,,arthritis...not that bad, do some physical therapy and do a bone scan... osteoporosis,,well you are small but we will check calcium,,,, 10.7...I asked, what do you think of the calcium being high? Well, its not that high, still in the normal range,, Take calcium pills and vitamin D...finally I did my own research and learned I have parathyroid disease when I never even heard of parathyroids! I replied to you Jan because you went to Dr Norman. I am now starting the process with them and its good to hear from real people with real testimonies. 2 weeks ago I would have never thought I would need surgery for something I didnt know I had. Now I am looking forward to hopefully a new lease on life!
My rheumatoid dr discovered my parathyroid problem too. I, also was told its not that high but at the same time my poor body was aching miserably/could barely walk at times. Even my endocrinoligist said it wasn't that high...it was over 10. I had the surgery done which was very simple... NOW I FEEL LIKE A NEW PERSON, even though some damage was already done with my bones, its much better.
Jan how long after surgery did you feel better. I had 3 tumors. Norman Parathyroid Center removed them with the Parathyroid glands. I'm 8 weeks out and still not feeling any better.
I am so happy you had your parathyroid fixed i have my operation in 2 weeks .im truly over feeling awful day and night.my whole body hurts all the time .horrible cramps.sore ribs tired all the time bless you regards kerry.
If you think you have a parathyroid tumor don't give blood it confuses doctors, and you can't explain it to them. You have approximately 10 pints of blood and if you take one out it drops vitamins in the blood by about 10%. It will reduce the calcium in the blood along with Vitamin D. With a lower amount of vitamin D your calcium will have a slow start to climbing back up, but it will. You can't explain the process to doctors either. also, if you give blood your kidneys won't have much calcium to filter out into the urine and that confuses them as well. *They will tell you that without vitamin D you can absorb calcium. High calcium hinders Iron absorption. Just some food for thought.
I did not hear anything about post-surgery symptoms. i had one parathyroid removed 8 days ago and i guess i felt slightly better for the first 3 days but then i started feeling worse like buzzing ringing in head/ear, slightly disoriented and just out of it. Is that normal? i know the body is trying to balance itself but my general well being feels worse thtn before the surgery
Thank you for this. It was very helpful. It's difficult to find information about post parathyroid surgery. I would like more information about how to take care of ourselves after when we are still having symptoms of fatigue, weakness, etc. We cannot find much if any information about this. Many thanks.
I think it's a waiting game and everyone is different. Age is an issue too plus how long she has had it. Three weeks is a little early to be feeling zippy. Some of us also find that we have hypothyroidism which then needs treated. My surgery was 9/18/17. Your sister may benefit from this Facebook group: facebook.com/groups/863158753764566/ Best wishes!
I had parathyroid surgery a year ago. I started having kidney stones (calcium) before surgery & have passed 1 more stone about a month ago. Should I start taking the calcium supplement again? Also, my doctor wants me to take the shots for osteoporosis since I do have some bone loss in my femur and forearm. The shots have side affects of stroke & heart attack. My mom died of heart disease & my sister has had several strokes (she is a diabetic) I am not. I do exercise with weights & walk every other day. I have no other health problems. Thank you
I have high calcium, low vit D, and normal PTH... should be low if tumor wasn't present. The doctor keeps testing and retesting. Making me get an FHH test even tho I now have osteoporosis from the high calcium and FHH doesn't go with osteoporosis. They are wasting my time. My insurance isn't taken by any of these top doctors. It's awful when my doctor acknowledges that she's confident that I have a tumor but inorder to satisfy health insurance company, they just keep testing over and over. I have ALL the symptoms. Our health system is pretty horrible. I'm having to FIGHT to get this surgery.
i just had mine(parathyroid surgery) on Thursday, May 9th and I have to take extra dose of calcium today which is Sat to help me with the numbness, I hope that is it and I don't have to take extra just 3 times a day and I will have my blood test again on Monday and see the doctor on Wednesday I feel ok no pain or anything, a little sore throat but not too bad.
Thank you. You answered all my post surgery questions. My expectations were off. I now know stones may continue to taper for years. How about Insomnia? Post surgery insomnia 3 months out is relentless. Female age 55 menopause years. I understand the hormones are complex in playing a role with Insomnia.
My surgeon removed ALL FOUR a of my parathyroid glands in 2010. He was not an endocrinologist surgeon. Two endocrinologist did not believe that he had removed ALL FOUR. After CT scans, it was confirmed that he removed ALL FOUR GLANDS. I cannot find one other person who has no parathyroid glands. I also cannot find an endocrinologist who has knowledge of my condition. I wish I could talk with someone who understands my condition and answer questions.
I had surgery and I felt like a completely different person in a bad way it’s been 5months and I feel like a completely different person I have brain fog and depression as well as an entire personality shift as well as my aneixty being much worse anybody else have this
Oh no. How were your moods before the surgery? I’m having those moods now and my surgery is June 28th. Are you feeling any better since you wrote this comment?
I had surgery x2 parathyroidectomy... following my 2nd surgery although my memory is much better I suffer still with joint pain more than ever. My mobility has decreased. I was admitted via emergency for ivi calcium ... as my levels dropped dangerously low. I am 6 months post OP and still hoping my joints will feel a little better. Still under Endocrinologist and having regular blood tests.
@@thesaffron_side hi since my second OP.. and my calcium dropped dangerously low i was rushed back in hospital put on ivi calcium drop. It's been 6 months i still feeling weak, my joints hurt and still experiencing cramp. I have regular blood tests with my levels fluctuate. I am experiencing constant perspiring sweating were am just literally dripping. Almost like my body cant control my body temperature and my valve is stuck on hot mode. That's the only way I can describe it. I spend days and nights stuck in front of a fan. I keep telling my Endocrinologist I still don't feel well but they keep telling me it's takes time !!!! I am also on thyroxine 50mg.
@@trixietrog hi. I just had hyperparathyroid surgery three weeks ago at the Parathyroid Center at Tampa General Hospital. I remember feeling like you do before my surgery. After reading your statement are you sure your surgeon removed the right gland? I decided not to have surgery in my home state because of things I read. I truly hope you feel better soon.
@@joolee4082 I am still under the Endocrinologist team my levels are stable at moment though they still not happy to discharge me. I have had hypertension and they dont know whether am producing to many hormones now. So I just take each day as it come. Hope your recovering well love & hugs from the UK xxxx
I've had a routine blood test showing elevated calcium last month. A second test 4 weeks later showed the same. I was referred to an endocrinologist. I wonder if my a-fibrillation diagnosis in 2018 is a possible symptom of ongoing high calcium. I was a-symptomatic otherwise I believe. All normal cardiac tests were done, imaging, stress test, etc., but no cause was ever identified.
I ve had a hyperparathyroidectomy Sept 24th, I still don't feel well, still swollen around the incision site, sore throat, mouth irritation, headaches, brain frog and pain.😩
one year after surgery and 14 years undiagnosed... i have tried everything and thought of everything i feel terrible...brain fog lifted and my heart stabilized, but i feel terrible and more as time has gone by. no life..bed sitting most of the time now... just waiting now for me and my little diabetic blind dog to wind down and wink together.
I'm so sorry to hear this. Going through life feeling horrible is so taxing emotionally. Did they check all of your parathyroids? Many times issues do not show on scans.
@@jrwaters943 You going wish you happened responded! I have a lot to say! They did and I have my doctor monitor my PTH and calcium levels every 3 months to be sure another does not come grow another. right now i will chase an armful of lactate to be hydrated and have electrolytes balanced. i had this done for ER (2018) visit BEFORE the tumor came out..they did this for a bad UTI with antibiotics and i felt amazing and walked a half of mile up a hill to the pharmacy instead of waiting for daughter to get out of school. in april i will ask for my doctor to order this...and IF i come home and vacuum and "hit" my little overgrown backyard with the mower....i will know for sure. i chased that tumor for 13-14 years....now i am chasing the poor recovery...and it's reasons i try to share what i learn go to parathyroidpeeps..online community of miserable people look up what happens to your magnesium when the tumor makes your PTH thus calcium goes up...it goes down!! body tries to help itself rid of excess pth, but you need the mg as a gatekeeper to ca...(excitatory and destructive to the cells)..physiology physiology....so far for months i have swallowed supplements...to no avail..
Just found out my oth is very elevated not sure why. I only found out because I had planned bariatric surgery in couple months and had my basic ore surgery bloodwork. For the last few months I’ve had array of the stamp tins. Got so bad I was losing weight pretty quickly but because I’m obese doctors weren’t concerned. I’ve been checked for several times for things mainly stomach pain in my right upper side that’s unexplained severe bloat and appetite loss. Calcium and kidney function normal. However only with in last two month have I been excessively sleeping foggy minded very forgetful and just don’t feel right
I have hyperparathyroidism and very weak bones,I fractured my spine at L5 and have scoliosis and kyphosis and nerve pain,will my bones grow stronger if I have surgery,also can my bones replace the bone loss after surgery
I’d like to know how elevated parathyroid hormone affects other endocrine hormones, i.e. cortisol and aldosterone. I have all three elevated plus a growing pituitary adenoma (9mm currently) and I have been stuck trying to prove to my endocrinologists that something isn’t right. They don’t take me seriously and end up referring me to nutrition and weight management (I gained 30 lbs in two months two times a total of 100lbs in less than a year while exercising and eating great. Actually I gained more weight while exercising due to an additional increase in cortisol levels. Since my internal medicine specialist told me to stop exercising I have been able to maintain my weight within a certain range) I have read (NIH studies) that elevated PTH levels can cause elevated cortisol and aldosterone but any professional thoughts would be great. Just as an aside: when you mentioned thirst as a symptom of this I immediately went to aldosterone because elevated aldosterone causes extreme thirst, which is exactly one of the symptoms I experience. Interesting.
recently just had parathyroidectomy x 2. im feeling close to normal 2 weeks later. after surgery i was instructed to take 1000mg and do so for the next 3 mos. on day 2, I experienced the numbness and tingling, lightheaded, disoriented, palpitations. this peaked on day 5, and was enough to seek emergency care ended up being admitted over night becuase my hr reached 110 -130, with unstrady gait due to weakness and they put me on beta blockers. i have never experienced this before. should i have been supplememted an increased dose of calcium over 1000mg? im afraid i was not given the appropriate post surgical care and im wondering if i could have avoided the visit to the ed and the extra dosage of calcium supplementation could have prevented my current state. thanks.
I had this surgury over a year ago and have been suffering with achilles tendonitis Since Sept. Would the removal of 3.5 of my parthyroid glands and taking 2 calcium supplements per day have anything to do with that? Thanks!
Hi I just have a question about post op weight fluctuation short and long term. I’m very nervous about gaining weight after surgery since I have worked so hard to lost weight this year. Ive heard some people gain a bunch of weight, some people lose, some it doesn’t affect at all. Want to hear your thoughts!
I had 3 and a half parathyroids removed and when they checked my blood levels, my calcium shot up again. I'm at my wits end. Anyone know what I can do? Doctors don't even seem to know
I’m having 4 small lumps removed and called they say doesn’t look diseased parathyroidecTom y. But no mention of any gland being removed. Doesn’t always mean gland removal???
I had 1 gland removed 3 days ago. I feel 100% better already. My symptoms of bone pain, brain fog, insomnia, frequent nausea and urination has all dissipated. I only had to take 2 pain pills and am now at zero pain. I was hypercalcemia for 12 years, stones 15 surgeries lithotripsy and stents. I am so happy I am healing and feeling so much better.
Same the way affected
Kk dist in India
Viecing is there how to solved?
im so sorry it took doctors so long to figure it out
More people should be tested for pth .I'm so happy if gone for surgery its day 3 and what a difference
Dr yeh did my surgery. My health was transformed in 24 hours after surgery. What a thrill to feel good again !!! Do it!! Life changing. I had 2 glands removed 👍🏻👍🏻. What a great kind and fun Dr. !!
Sounds great! I can't wait to get my surgery
I’m next Jaja next month I believe they are going to removed 2
As a patient education professional (and someone with hyperparathyroidism), I am impressed with the outstanding communication skills of these physicians. Thank you!
.
I am in my 3rd day after surgery and I feel alot beter I went in on Thursday its Saturday today its like being lucid for the firsttime in years
I had mine yesterday, all of my muscles hurt. Otherwise, high spirits.
Thank you! I had exactly the scenario of surgery last Thursday and went to ER Saturday morning with “symptoms” resembling low calcium. My calcium measured normal in ER. Too many videos saying I felt “great instantly”. Adjusting to normal calcium levels after years of high is not instant for me. I feel so reassured after this video because I have been regretting surgery so far, but now I am confident that it will just take time.
How do you feel now?
I appreciate that you talk about the quality or rigor of information out there. That isnt mentioned often enough when people talk about science and health especially. Thank you for admitting that not all aspects if health are fully understood. Especially conditions like parathyroid malfunction.
I have all of those symptoms, but what promped us to ask our doctor about it was when we realized that these problems were getting worse no matter what we tried. We had tried so many things that normally work for most people and had tried them long enough that the doctors who had prescribed the treatments said that they were at a loss and didnt know why it wasnt helping. So we were at our wits end when we asked our new family doctor (our old one retired). He scheduled a full blood test that found really high calcium, PTH, and low vitamin D. He recommended us to an endocrinologist.
Took four years of him testing me in every way to figure out what my condition was and what was causing it. Tested to see if it was secondary hyperpara or primary and had me try dietary changes and vitamin D supplements. That didnt workbafter really giving it a try for two years.
Once he decided it was primary hyperpara, he recommended the most experienced surgeon in our region. Took three months to get the surgery.
The surgery went well. Surgeon said he removed a nearly 3 CM long adenoma that was oressing on my vocal chords. Didnt damage my vocal chords nor any other if the many things in my throat.
Maybe my situation is unusual, but after the medicines they gave me during my surgery and overnight stay in the hospital wore off, my throat is now very sore. I took the hydrocodone they prescribed for three days but switched to tylenol with codene after that because I was getting constipated. That fixed the constipation, but now my neck is much more sore. I took all of my antibiotics as directed and have tried to keep up the breathing exercises they had me start in the hospital, but Im still coughing. Nine days after surgery Im still coughing but at least the phlegm isnt as thick, yellow or plentiful anymore. I hope the coughing quits soon. It really hurts to cough.
I am 50, but Ive never smoked anything and rarely drink. I did have farmers lung 17 years ago when I lived in a very humid place and my apartment had moldy ceilings and walls that leaked. Maybe thats part of it. I live in the desert now and its a nice hot dry summer that Im recovering in and our current house tested negative for molds.
I still have aches, sore muscles and joints, insomnia, mental fog and anxiety but they are gradually getting less severe. My itchiness isnt as bad. It was starting to be as bad as chickenpox but without the sores before surgery.
Four days after surgery, I had numbing in my hands, feet and face, so I took the calcium supplements they prescribed. It seemed to help. My fingers till feel numb and tingly at times asxthey did before surgery, but not as bad now.
The biggest issue is trying to keep the stitches dry and clean without touching them. Its very hard, especially when I get sweaty.
I am getting better gradually. Im not finding recovery as easy as some say it was for them. When I get discouraged, I remind myself that Im having an easier time of it than people did back when they had to cut a much bigger inscision, or even before that when they didnt know how to do surgery for solving this illness.
I'm 38, I have had strange symptoms for years now (I estimate 15 years) and today I finally got a diagnosis. Depression, high blood pressure, frequent urination, kidney stones, extreme fatigue, I figured I'd be dead by the time I'm 50. After all these years of wondering what the #$%^ is wrong with me, this diagnosis and knowing that I am not a hypochondriac (which my [soon to be former] psychiatrist and my family was convinced of) is like winning the lottery. I'm looking forward to getting rid of the @#$%ing tumor and starting a new chapter. Sorry doc, I don't need anti-depressants, it was a tumor. The endocrinologist even said "you have had this tumor for a loooong time". He also said that if someone with normal calcium levels were to suddenly have my levels, they'd either be in a coma or drop dead.
Weird (and nice) to hear someone that is in the exact same situation as me. I thought i was crazy. Finally im getting surgery soon. Hope you are ok
Glad you finally got right treatment. How are you feeling now?
Yes I thought I just had severe anxiety
Wow, thank you so very much for sharing your story!
Yes this! Been feeling like I been going crazy for years. When they finally told me they found something in my CT results, I said finally getting some answers and I’m not crazy.
I'm an 83 year old post-operative parathyroid patient. My pre-operative calcium levels never exceeded 11.0 but were consistently between 10.2 and 10.5 (normal?). Mypost-operative calcium levels were 9.6 to 9.8 for about five years. Years six and seven have seen rather more fluctuations in calcium level and recently 11.3 was recorded. I visited a endocrinologist/surgeon this week and was told that I DO NOT have parathyroidism; that opinion based exclusively on calcium and PTH numbers. Four of my last six blood tests recorded levels of 10.0 + and some endocronolists suggest that for a person my age the numbers should be much lower with the inference that parathyroism cannot be ruled out simple because some test levels are below 10.5. This video was excellent and I commend Drs. Livhits and Yeh for their outstanding presentation! I would like to read more about the variations of calcium levels within different age groups and the relationship between calcium levels and symtoms.
Find another Endocrinologist. Have a new ultrasound and urine calcium, may even want to contact the surgeon, who did your first sugery.
Thank you. I have a parathyroid removal coming up, and this puts me at greater ease.
Thank you for your great informative video. I had a minimally invasive parathyroid surgery 3 years ago. Two very large parathyroids were removed and a large thyroid nodule as well. This was done in Tampa by Dr Norman and his surgery is same as yours. I had hyperparathyroidism for at least 10 or 13 years before it was diagnosed and I suffered terribly..had something like 18 out of 20 symptoms. I noticed improvement almost immediately after surgery especially in brain fog, confusion, crabbiness, and forgetfulness. My muscles still ache more than they should and I have a bad hip that hasn't gotten much, if any, better. But my numbers are great and I feel so much better after the surgery than I did for years and years before. I lost so much of my life to this disease not knowing what was wrong with me. I urge everyone with high calcium, low vitamin D, and high PTH to go to an endocrinologist and if you have, or even think you have, hyperparathyroidism DO NOT wait for years. One year of waiting to see if your numbers change is almost too long. Go, go now. Thanks for spreading the good word about hyperparathyroid surgery.
Mar L
Thank U for sharing! You are correct in stressing the importance of early and accurate diagnosis
Now u have hapertairod or hypotairod
UCLA Health where r u located and if some patient want to undergo surgery how to reach
I had a parathyroid gland removed about 3 weeks ago and have muscle and joint pain really painful.what can i do?
My doctor never put me on any vitamins.
Just had parathyroidectomy Friday and I'm feeling great !!
GWEN WILSON , was the surgery long ? I’m so scared to get mine done .
@@melissamincer7448 I was under 3 hours and to be honest it wasn't bad at all. Just a sore throat and went home! 3 days ago surgery and today I feel like a complete new person!
GWEN is it hormone surgery
😘
@@melissamincer7448 get it done. very little pain. feel so much better, From cripple to Crip Walking (google, smile)
I just had a parathyroidectomy surgery last Friday by Dr. John Kairys at Thomas Jefferson Hospital in Philadelphia, PA. I can say I had a wonderful doctor and I didn't notice the signs and symptoms of the disease until my primary doctor looked at my lab results for high calcium. I've been recovering now for a week and the fogginess and forgetfulness aren't as prevalent. According to my doctor, it looks as though I had this condition for about 4 years and because I am 50 years old I actually thought my symptoms were signs of aging. I am grateful to my doctors for catching this disease. I still feel like my body is trying to adjust to the changes, but otherwise than that, I feel pretty good :)
I live in Delaware County. I just had routine blood tests showing elevated calcium and have been referred to an endocrinologist. The doctor is booked until September. I might check out Jefferson now.
Was diagnosed with primary hyperparathyroidism and had surgery to remove the rt parathyroidectectomy done on thursday the 9th.was home on 10th feeling better. Pain is not that much. Thanks for your teachings.
Most. Patients like me, wait years for right diagnosis. Finally. Parathyroid surgery next month. Get the right blood draws. From an endo specialist, not yr family dr. I learned. Blessed
some thyroid doctor doesn't hardly check for anything
Just watched your video. Had my surgery yesterday and I'm pretty sore. It was good to be reassured at this point that there are "bones and stones" long term benefits from parathyroidectomy. Also hoping that my fatigue gets reduced as well as my frequent urination and other symptoms. Your presentation was very clear. Thank You both!
I’m glad that you got the right treatment. Any update about your quality of life right now?!
Can I ask you a question?
I was told to shower with a special soap , no lotions or makeup, don’t shave legs or anywhere on my body
before surgery. 😳. Huh?
Do they put a catheter in place? Why all the precautions? This seems extreme.
Any advice you can give would be appreciated. 😅
I just watched this presentation . I am having parathyroid surgery at UCLA by Dr. Sercarz in 2 weeks. This video is so informative . I am so happy I found this .. Thank you for. doing this presentation.
I can't thank enough for both of you. Very detailed and clear presentation. Thanks for doing that.
It took FOREVER to get a proper diagnosis. 3 Decades. I'm now facing the removal of all 4 PTGlands. I've never heard of anyone else having that many taken out! It worries me a bit... Glad to hear so many of you had great results!!
I am 78 and was diagnosed a month ago with hyper parathyroid. My doctor is keeping a close watch. So far😢 calcium levels have been good.
Excellent ..thank you so very very !
My wife just had Parathyroid Adenoma surgery at Duke .. the entire experience was superb and she is doing exceedingly well. Your discussion clarified and amplified many of our remaining questions and observations .
I had surgery done 4 weeks ago and I don't feel better yet. I'm happy to hear some people felt better right away, I wish that was the case for me 😢
If you are not feeling better, I would ask your doctor if the surgeon inspected ALL FOUR of your parathyroid glands for tumors and did not just remove the adenoma/tumor that showed up on the scan. PT scans are notorious for failing to show all tumors and experienced surgeons know to check all PT glands for signs of disease.
I pray for your betterment. Get well soon. Get rest. My mother also is going to take this surgery. Currently been looking at this comment to ease my mine. Hope it will help.
@@pattyclark5492 They did not check all 4 ☹
I've requested for them to keep checking my blood and the numbers keep increasing but since they're still falling in the normal range it doesn't seem like they want to do anything about it.
I tried to explain to them that with them removing a 4 cm tumor off the one the other 3 were dormant and it's going to take a little bit for them to overact but they don't listen to me . I've been trying to find another doctor but because my levels are still considered in the normal range it doesn't seem like anyone wants to do anything.
I feel worse now than I did before my surgery 😭
I highly recommend everyone to make sure your surgeon checks all 4 parathyroid glands and I requested my surgeon to do that but she didn't listen to me because she felt as though as long as they check my blood during my surgery and it drops at least 50% then they know they got everything which I don't think is the case.
If your surgeon says they only check your blood and not all 4 find another surgeon that will check all 4 glands.
@@user-gs1sh7tz1g thank you so much ❤ make sure your mom has an agreement with the surgeon to check all four parathyroid glands and not just go by testing the blood during a surgery. It seems like if a surgeon does that it will be a successful surgery
Kim go back to your doctor
I recently had parathyroid surgery. When I was researching my calcium level pre op I read that over 40 years of age a calcium of 10 or above is considered elevated. I wish you had addressed that on the video because a lot of doctors don't know that.
Yes! My two doctors blew off my 10.7 calcium level in 2020 and then 10.4 in 2023. I turned 60 so they just assume it’s post menopause These doctors know I was feeling awful and had osteoporosis/hypertension and is why I asked for bloodwork.
Then I showed my recent 2023 calcium level to my son who is in his first year of residency. He advised I get a PTH level. Sure enough it was high. So it’s pretty obvious I have a parathyroid tumor that the “seasoned” doctors missed. I asked one to include “all the thyroid bloodwork.” He did all the thyroid ones BUT the parathyroid level. I assumed all were done. Testing scans is tomorrow. Yes, I’m anxious.
Fast forward to 31:44 and they discuss calcium levels (8.5-10.5 is normal, but he prefers a level that is in the middle of those two numbers)
Right! Mine didn't and so I walked around for 2 years or more with a tumor. When I asked her after my surgery why she didn't notice the high calcium levels she said "it didn't raise a red flag for me." Yet my phosphorus was low and a particular enzyme was off. I did the research and took myself to Dr. PRITBITKIN at Jefferson in PA. Wonderful man and surgeon. Tested me and performed the surgery. I advise anyone to look at your own bloodwork. Don't wait for the doctor.
I just had parathyroid surgery yesterday and am literally watching this from my hospital bed. This is very informative. Thank you!
Going in tomorrow morning and I'm freaking out
@@mmabathomakhura2715 Don't freak out. They put you out? You sleep soundly, you wake up, and it's over.
I just had surgery yesterday. Went in thinking it only one. A little over 3 hours later they had removed 3 of mine. My PTH level was 491 at the start of the operation.
@@tanyas.9688 You made that sound wonderful as I am terrified but I'm trusting God my physician & going in to have my surgery.
@@brianingham9569 How are you feeling now?
I had a bad parathyroid removed last October, was the size of an almond. It's been almost 6 months & finally about a month ago the EXTREME fatigue is gone. My calcium was so high before surgery...12.2. Surgery was a breeze. Was back to work in 2 weeks.
Very helpful as I'm to have the surgery in 3 weeks time. I look forward to better quality of life.
Tell me about how u did post op?
I had hyperpathroidism with hypercalcema.. over 11 calcium and up to 177 pth. It took 3 ultrasounds and 3 scans.. last one laser to find the adoema.. which was encased inside my thymus in the upper chest area. They never did find the other 3. I didn't like that I have the large incision surgery instead of the inch or inch and a half incision. I'd heard that even when a parathyroid migrates downward behind the clavicle that it can still be retreived using the inch or inch and a half surgical incision. The incision I got was from the typical large incision from clear back to 1925. What I read said it was imparitive to make sure you've got a great surgeon who specializes in hyperparathyroidism. I was lucky to have a great general surgeon, but had assumed I was getting a specialist by going clear to Mayo Rochester Clinic instead of local surgeons.
Must have a specialist for this operation.
Unfortunately I consulted with these Docs and was extremely disappointed. They considered 1 lab they drew and dismissed me with, “Sorry you feel so bad, but we do not see you need surgical intervention, and it’s best not to look up all your symptoms on the internet and feel you Have Hyperparathyroidism “. In other words suggested I was trolling for symptoms. When you are as sick as you are with this disease, the LAST thing you need is to be accused of making up symptoms. I have 13 years of intermittent high calcium, but my PTH remains in the normal range. I had a vertebrae compression fracture for no reason last year, have developed a kidney stone, high blood pressure, increasing osteopenia, then ALL the other symptoms to the point of nearly being bedridden. So when they only considered one blood test and not my long history, insinuated my symptoms were in my head...............consulting them was beyond disappointing.
I'm so sorry to hear that😦I hope that you feel better now . I'm 18 and I went through pretty much the same thing because the doctor I went to see didn't listen to me and told me that my symptoms: bone pain,heart palpitations,HAIR fall,loss of appetite... we're caused by stress even without giving me any exams and she got so mad for some reason when I went to do a blood test by myself for some reason😐 but this blood test pretty much saved me and I'm so glad that I found an awesome doctor that diagnosed me and I did a parathyroidectomy a month ago and everything is fine now for the moment 😊I have a check up soon but I'm so thankful when I think that a month ago I wasn't able to do the simplest things like:walk, swallow,wash my hair by myself so I'm positive that I won't need to do the surgery again🙏
@@ouizatoubal9938 How are you doing now??
This is not a good doctor. It is not " all in your head" my doctor saw levels of increased levels of calcium in my blood and sent me for a special ultrasound of parathyroid gland and a dexa scan for my bones. Go to another doctor please. My surgery is in a few weeks to remove the tumors. U will feel so much better being in the hands of a good doctor. Let me know when u go for surgery! My thoughts are with you.
Went to ER after second parathyroid surgery. I had ALL the symptoms of low calcium and test said 4.8 level and they did NOTHING for me. No calcium, no food, no drink. Laid on a hard bed for 8 hrs, checked me for drugs and stroke and billed me $8,000. I still have a surgical clip left in my throat years later and so start pain in my throat. It has calcified over, but Vanderbilt was a nightmare.
I just had a removed of 2 abnormal parathyroid glands. And with 12 hrs of that surgery. I had to be rushed to er for bleeding from clots around thyroid under my skin. And bleeding from busted blood vessel on my thyroid. Second surgery to stop bleeding
My mother, may G_D rest her soul, was a RN and I recall she told me that a hip fracture was the most painful type of fracture, and the hardest to treat.
I will get parathyroidectomy for the next 3 day because I have already osteoporosis and broken femur. I experience hypercalcemia, hyperphosphatemia, hyperparathyroid hormone (1900), low vitamin D, because I have been long in dialysis (for about 12 years). Wish me luck..
How are you now?
I’m having surgery soon for this so these are calming me quite a bit haha
howd it go?!
Jee Lee I get surgery in December. They’ve been bickering over what to do lol
@@dovaqueen6221 Yes, I am also confused as whether to go for the removal or Reclast procedure. The calcium level is 10.8
I had surgery and only mild pain, glad I had it..
Yeah if only doctors listen to their patients more and not judge them on age. ( not all )
I had it now for 11 years. The doctors labeled me hyperkondric (imagine the pain), even put me for some time in a mental hospital, cause they said i lied about my experience about pain, loss of energy, muscle and stomic pain. Until i went to a private hospital for examination. Who found it out. Unlucky i live in socialist denmark, and there is no money to make my operation. The doctors say, cause ive had it for so long, i will die with a couple of years. Im 48 now
You guys were amazing. I value so much the educational videos! Thank you!
I'd love if you did a webinar about how to improve your bone health naturally. It would be very helpful if you could compare all of the different medications and natural remedies for improving bone strength and reducing the likeliness of fracture.
To give you background I'm a 45 year old female who has had elevated blood calcium for years in the 10 sometimes 11s and doctor after doctor has said we'll watch it (until I wasn't having any more of that nonsense). My mother had a genetic test that showed a gene that "could possibly have a link to elevated blood calcium" the doctors were not definitive on this. My mother also had blood calcium that was sometimes high. My pth is on the lower side of normal. I have a history of smoking, I'm in perimenopause. After insisting on a bone density test I was told I have osteoporosis in my spine and osteopenia in my hips. I've always had a healthy diet. For the most part I have maintained a healthy weight (5'.2" 92- 148 lb (105-112 lb was my norm)). Occasionally being underweight and once being slightly overweight due to undiagnosed bacterial overgrowth of candida, sibo and leaky gut.
I feel like my doctors have hastily jumped to the conclusion that I have fhh. It would not explain my osteoporosis/ osteopenia which seems odd in a woman of my age and with my dietary history. No one in my family has ever had osteoporosis to the best of my knowledge.
I'm reluctant to take medications, because though they help with bone density, they also make your bones more brittle. I have found no research that shows that the medication produces a positive outcome meaning that it reduces fracture rate.
I think I may have misdiagnosed parathyroid tumors and would appreciate your thoughts on this.
Get the surgery.
Excellent presentation doctors! Thank you for taking the time to clearly explain this condition. I wish I had found your video five years ago.... My quality of life has significantly declined to the point that I have Osteoporosis, bone pain, depression and anxiety, which my doctors never were able to find the cause, even though I was so proactive in asking questions, etc., especially because my osteoporosis was so advanced when I was 55. Recently, My endocrinologist prescribed Timlos and that’s when my high calcium levels were addressed., as well as my parathyroid hormone levels. I will be having a ct scan to determine if I have an adenoma and if surgery is needed. Your video is making me so hopeful and optimistic that I can get my life back!
On3 question, do you think that I should take Timlos injections after surgery to improve bone density? I’d prefer not to take it because these are daily injections for two years. Perhaps the osteoporosis will be reversed after surgery.... I pray for a miracle. Thank you so much!
Great information and presentation. I thank you! Off to surgery😳😊😊
Thank you for your presentation! It was very detailed and easy to follow and understand.
Anyone else feel like this talked them out of getting this surgery? I had already opted to monitor my hyperparathyroidism, and the information given here reaffirms my decision.
Sifu don't! If you have HPT, elevated PTH levels and or Calcium levels -even if they're high/ 'normal', get the procedure from the best, most experienced surgeon you can find. This video sucks. Trust me man. My imaging didn't show which one was bad, I was hesitant, but they 'have' to check all 4 if it's a good surgeon. That told me right away these guys lack knowledge and experience, afraid to step on toes at cost of people watching to have failed surgery?
Have had it for years and the symptoms get worse. Even switched surgeons prolonging the operation but it was for the best. There's good & bad surgeons out there for any procedure and this one needs someone with lots of experience. A ton of research on this prompted me to change surgeons. Covid delayed it more and I just had it this morning. That's only reason why I watched this... and after all the previous research, videos etc.. this video is NOT one to base any judgement on. Sifu teaches mind/body.. they both suffer loss with this condition. Your call
The video emphasized the importance of surgical treatment of hyperparathyroidism. It will not get better by itself. It will get worse, your osteopenia will turn to osteoporosis, etc. There is no reason to monitor.
Wayne-O I appreciate the information. I consulted an endocrinologist in Seattle and even he said that it could lead to osteoporosis in my 80s. Not many people in my family even make it to their 80s. My doctor told me that some people with high calcium levels (my PTH level is normal - calcium is at the high end of normal) are completely asymptomatic, and so far (knocks on wood), I am one of those. I will get it checked every year and may reevaluate if things change. It looks like it’s been a few months since your surgery, might I ask for a quick review of your experience and recovery?
@@LastSifu Look up FHH. Familial hypocalciuric hypercalcemia. Did your endocrinologist exclude that? Also, Calcium and phosphate are very tightly regulated electrolytes. 10.3 is normal Ca, 10.6 is already hypercalcemia.
This was very informative and helpful. Thank you so much!!!
This presentation was incredibly helpful and useful to me. Thank you!
Kind Regards
Was just told today that my parathyroid is low, waiting to hear from a consultant now,, I also had my thyroid gland removed 10 years ago, anyone else like this thanks😱
Hi James...thank you for sharing. So, you are saying that you are still having problems AFTER having your thyroid removed?
Thank you for all informative matter pertaining to the outcome of post surgery.
Great video. I wish you could do my parathyroid surgery.
mquevedo515@aol.com
My neighbor, a thin, fragile elderly woman, had a fall in the hallway of her apartment on the way to her bathroom. Sadly, died 3 days later in hospital.
Why aren’t people told that along with the various symptoms that your vision impairment can see things not there or the same as others see?
I also enjoyed your informative video.
I had a successful parathyroidectomy at the Normand Center two months ago. I feel like Mar L below who feels strongly about encouraging people to act now. They surmised I had had hyperparathyroidism for 5 years. I had 3 tumors removed (one that was producing 1034 pth by itself). What if they had only checked one gland?
How can you get out the word to surgeons that it is NOT okay to not check all four glands? (Especially when your data shows no differences in prevention of fractures later on when all the tumors are not removed)
How can you get general practitioners to recognize calcium levels over 9.5 are NOT something they should watch for a while. Blood test reports do not raise a red flag to a calcium level that high. My rheumatologist was the one who discovered my problem. I had the psychological issues and yet my psychiatrist did not suggest getting a blood test that could have caught this.
How many people are suffering from hyperparathyroidism symptoms and will suffer from long term results of non diagnosis because doctors don't recognize the disease?
I have forgiven the various doctors through the years who never caught the disease since the emotional symptoms can be attributable to a wide variety of illnesses. I sure do wish though that some doctor could have picked up on it sooner. The quality of life after surgery improves SO dramatically!!
I told her I was starting to feel unmotivated brain fog, forgetful. She checked my thyroid...subclinical, take Synthyroid,, Told her I was constipated all the time, well, its not the medication, that should make you better...eat more fiber,,, My back pain had reached epic proportions,,, xray,,arthritis...not that bad, do some physical therapy and do a bone scan... osteoporosis,,well you are small but we will check calcium,,,, 10.7...I asked, what do you think of the calcium being high? Well, its not that high, still in the normal range,, Take calcium pills and vitamin D...finally I did my own research and learned I have parathyroid disease when I never even heard of parathyroids! I replied to you Jan because you went to Dr Norman. I am now starting the process with them and its good to hear from real people with real testimonies. 2 weeks ago I would have never thought I would need surgery for something I didnt know I had. Now I am looking forward to hopefully a new lease on life!
My rheumatoid dr discovered my parathyroid problem too. I, also was told its not that high but at the same time my poor body was aching miserably/could barely walk at times. Even my endocrinoligist said it wasn't that high...it was over 10. I had the surgery done which was very simple... NOW I FEEL LIKE A NEW PERSON, even though some damage was already done with my bones, its much better.
Jan how long after surgery did you feel better. I had 3 tumors. Norman Parathyroid Center removed them with the Parathyroid glands. I'm 8 weeks out and still not feeling any better.
I am so happy you had your parathyroid fixed i have my operation in 2 weeks .im truly over feeling awful day and night.my whole body hurts all the time .horrible cramps.sore ribs tired all the time bless you regards kerry.
Hi, are there any potential side affects after the surgery? Immediate side affects or long term side affects?
If you think you have a parathyroid tumor don't give blood it confuses doctors, and you can't explain it to them. You have approximately 10 pints of blood and if you take one out it drops vitamins in the blood by about 10%. It will reduce the calcium in the blood along with Vitamin D. With a lower amount of vitamin D your calcium will have a slow start to climbing back up, but it will. You can't explain the process to doctors either. also, if you give blood your kidneys won't have much calcium to filter out into the urine and that confuses them as well. *They will tell you that without vitamin D you can absorb calcium. High calcium hinders Iron absorption. Just some food for thought.
I did not hear anything about post-surgery symptoms. i had one parathyroid removed 8 days ago and i guess i felt slightly better for the first 3 days but then i started feeling worse like buzzing ringing in head/ear, slightly disoriented and just out of it. Is that normal? i know the body is trying to balance itself but my general well being feels worse thtn before the surgery
Great webinar!!!!!!
Thank you for this. It was very helpful. It's difficult to find information about post parathyroid surgery. I would like more information about how to take care of ourselves after when we are still having symptoms of fatigue, weakness, etc. We cannot find much if any information about this. Many thanks.
I think it's a waiting game and everyone is different. Age is an issue too plus how long she has had it. Three weeks is a little early to be feeling zippy. Some of us also find that we have hypothyroidism which then needs treated. My surgery was 9/18/17. Your sister may benefit from this Facebook group: facebook.com/groups/863158753764566/ Best wishes!
PS: She should also check with her doctor if the fatigue and weakness are severe.
bjhunt01 check out the Coimbra Protocol 😉
I had parathyroid surgery a year ago. I started having kidney stones (calcium) before surgery & have passed 1 more stone about a month ago. Should I start taking the calcium supplement again? Also, my doctor wants me to take the shots for osteoporosis since I do have some bone loss in my femur and forearm. The shots have side affects of stroke & heart attack. My mom died of heart disease & my sister has had several strokes (she is a diabetic) I am not. I do exercise with weights & walk every other day. I have no other health problems. Thank you
Is there a reason why someone might not want to get the surgery?
Can you make the screen larger in the presentation?
My ipth level is 563 and ca is 12.2 with nephrocalcinosis .it just raised in few days..
I have high calcium, low vit D, and normal PTH... should be low if tumor wasn't present. The doctor keeps testing and retesting. Making me get an FHH test even tho I now have osteoporosis from the high calcium and FHH doesn't go with osteoporosis. They are wasting my time. My insurance isn't taken by any of these top doctors. It's awful when my doctor acknowledges that she's confident that I have a tumor but inorder to satisfy health insurance company, they just keep testing over and over. I have ALL the symptoms. Our health system is pretty horrible. I'm having to FIGHT to get this surgery.
Thank you for this information.
i just had mine(parathyroid surgery) on Thursday, May 9th and I have to take extra dose of calcium today which is Sat to help me with the numbness, I hope that is it and I don't have to take extra just 3 times a day and I will have my blood test again on Monday and see the doctor on Wednesday I feel ok no pain or anything, a little sore throat but not too bad.
Thxs for the informative presentation.
Parathyroid problems are due to boron deficiency...the parathyroid is the main calcium regulator in the body
Great discussion
Thank you. You answered all my post surgery questions. My expectations were off. I now know stones may continue to taper for years. How about Insomnia? Post surgery insomnia 3 months out is relentless. Female age 55 menopause years. I understand the hormones are complex in playing a role with Insomnia.
i am one month out and finally sleeping.... still taking calcium and added magnesium. Are you sure they checked all four of your parathyroids?
consider melatonin supplement for insomnia
My surgeon removed ALL FOUR a of my parathyroid glands in 2010.
He was not an endocrinologist surgeon.
Two endocrinologist did not believe that he had removed ALL FOUR.
After CT scans, it was confirmed that he removed ALL FOUR GLANDS.
I cannot find one other person who has no parathyroid glands.
I also cannot find an endocrinologist who has knowledge of my condition.
I wish I could talk with someone who understands my condition and answer questions.
Wow that's crazy, you can be good with half of one. But all 4 should not be removed, there's nothing else that controls the calcium levels
I had surgery and I felt like a completely different person in a bad way it’s been 5months and I feel like a completely different person I have brain fog and depression as well as an entire personality shift as well as my aneixty being much worse anybody else have this
Oh no. How were your moods before the surgery? I’m having those moods now and my surgery is June 28th. Are you feeling any better since you wrote this comment?
Thank you for post this video!
I had surgery x2 parathyroidectomy... following my 2nd surgery although my memory is much better I suffer still with joint pain more than ever. My mobility has decreased. I was admitted via emergency for ivi calcium ... as my levels dropped dangerously low.
I am 6 months post OP and still hoping my joints will feel a little better.
Still under Endocrinologist and having regular blood tests.
@@thesaffron_side hi since my second OP.. and my calcium dropped dangerously low i was rushed back in hospital put on ivi calcium drop.
It's been 6 months i still feeling weak, my joints hurt and still experiencing cramp. I have regular blood tests with my levels fluctuate. I am experiencing constant perspiring sweating were am just literally dripping. Almost like my body cant control my body temperature and my valve is stuck on hot mode. That's the only way I can describe it. I spend days and nights stuck in front of a fan. I keep telling my Endocrinologist I still don't feel well but they keep telling me it's takes time !!!! I am also on thyroxine 50mg.
@@trixietrog hi. I just had hyperparathyroid surgery three weeks ago at the Parathyroid Center at Tampa General Hospital. I remember feeling like you do before my surgery. After reading your statement are you sure your surgeon removed the right gland? I decided not to have surgery in my home state because of things I read. I truly hope you feel better soon.
@@joolee4082 I am still under the Endocrinologist team my levels are stable at moment though they still not happy to discharge me. I have had hypertension and they dont know whether am producing to many hormones now.
So I just take each day as it come. Hope your recovering well love & hugs from the UK xxxx
Prayed for you. 💗
I've had a routine blood test showing elevated calcium last month. A second test 4 weeks later showed the same. I was referred to an endocrinologist. I wonder if my a-fibrillation diagnosis in 2018 is a possible symptom of ongoing high calcium. I was a-symptomatic otherwise I believe. All normal cardiac tests were done, imaging, stress test, etc., but no cause was ever identified.
I was vising problem is there how to controlled? Pls any suggtion
I ve had a hyperparathyroidectomy Sept 24th, I still don't feel well, still swollen around the incision site, sore throat, mouth irritation, headaches, brain frog and pain.😩
🙏🏾🙏🏾🙏🏾
How do you feel now?
@@nrltime5820 I m feeling better. I feel like my throat had gotten sensitive since. I get sore throat every time the weather changes
What kind of calcium should one take post-op?
Very helpful!
What Food will you recommend for fast recovery of patients after Thyroidectomy?
Very helpful. Thanks.
one year after surgery and 14 years undiagnosed...
i have tried everything and thought of everything
i feel terrible...brain fog lifted and my heart stabilized, but i feel terrible and more as time has gone by.
no life..bed sitting most of the time now...
just waiting now for me and my little diabetic blind dog to wind down and wink together.
I'm so sorry to hear this. Going through life feeling horrible is so taxing emotionally. Did they check all of your parathyroids? Many times issues do not show on scans.
@@jrwaters943
You going wish you happened responded! I have a lot to say!
They did and I have my doctor monitor my PTH and calcium levels every 3 months to be sure another does not come grow another.
right now i will chase an armful of lactate to be hydrated and have electrolytes balanced.
i had this done for ER (2018) visit BEFORE the tumor came out..they did this for a bad UTI with antibiotics and i felt amazing and walked a half of mile up a hill to the pharmacy instead of waiting for daughter to get out of school.
in april i will ask for my doctor to order this...and IF i come home and vacuum and "hit" my little overgrown backyard with the mower....i will know for sure. i chased that tumor for 13-14 years....now i am chasing the poor recovery...and it's reasons
i try to share what i learn
go to parathyroidpeeps..online community of miserable people
look up what happens to your magnesium when the tumor makes your PTH thus calcium goes up...it goes down!! body tries to help itself rid of excess pth, but you need the mg as a gatekeeper to ca...(excitatory and destructive to the cells)..physiology physiology....so far for months i have swallowed supplements...to no avail..
Just found out my oth is very elevated not sure why. I only found out because I had planned bariatric surgery in couple months and had my basic ore surgery bloodwork. For the last few months I’ve had array of the stamp tins. Got so bad I was losing weight pretty quickly but because I’m obese doctors weren’t concerned. I’ve been checked for several times for things mainly stomach pain in my right upper side that’s unexplained severe bloat and appetite loss. Calcium and kidney function normal. However only with in last two month have I been excessively sleeping foggy minded very forgetful and just don’t feel right
I have hyperparathyroidism and very weak bones,I fractured my spine at L5 and have scoliosis and kyphosis and nerve pain,will my bones grow stronger if I have surgery,also can my bones replace the bone loss after surgery
An excellent presentation, though at times one feels that the gentleman sounds vaguely diplomatic just as “ if by whiskey you mean”.
Thx you very good info..How long should I stay home? Whn can I go back to work? thx you
Is it normal to have jaw pain after a parathyroidectomy
I’d like to know how elevated parathyroid hormone affects other endocrine hormones, i.e. cortisol and aldosterone. I have all three elevated plus a growing pituitary adenoma (9mm currently) and I have been stuck trying to prove to my endocrinologists that something isn’t right. They don’t take me seriously and end up referring me to nutrition and weight management (I gained 30 lbs in two months two times a total of 100lbs in less than a year while exercising and eating great. Actually I gained more weight while exercising due to an additional increase in cortisol levels. Since my internal medicine specialist told me to stop exercising I have been able to maintain my weight within a certain range) I have read (NIH studies) that elevated PTH levels can cause elevated cortisol and aldosterone but any professional thoughts would be great. Just as an aside: when you mentioned thirst as a symptom of this I immediately went to aldosterone because elevated aldosterone causes extreme thirst, which is exactly one of the symptoms I experience. Interesting.
recently just had parathyroidectomy x 2. im feeling close to normal 2 weeks later. after surgery i was instructed to take 1000mg and do so for the next 3 mos. on day 2, I experienced the numbness and tingling, lightheaded, disoriented, palpitations. this peaked on day 5, and was enough to seek emergency care ended up being admitted over night becuase my hr reached 110 -130, with unstrady gait due to weakness and they put me on beta blockers. i have never experienced this before. should i have been supplememted an increased dose of calcium over 1000mg? im afraid i was not given the appropriate post surgical care and im wondering if i could have avoided the visit to the ed and the extra dosage of calcium supplementation could have prevented my current state. thanks.
THANK YOU!
Great job!
What if you have a hip replacement and kidney issues...Is there an issue with calcium intake with kidney disease
I had this surgury over a year ago and have been suffering with achilles tendonitis Since Sept. Would the removal of 3.5 of my parthyroid glands and taking 2 calcium supplements per day have anything to do with that? Thanks!
I had no pain from the operation but i could not talk or swallow because of the anaesthetic procedure
I've had three surgeries
I had the surgery done 2 weeks ago and still not feeling well at all
I had my thyroid removed, how much harder is it to find my parathyroid glands?
check with endocrine doctor
When will the pain in the feet and have neurological issues?
My sister have pth 1700 un luckily she have amputation on her right leg and she taking dailaisis she continue a horrible life pls give advise.
Hi I just have a question about post op weight fluctuation short and long term. I’m very nervous about gaining weight after surgery since I have worked so hard to lost weight this year.
Ive heard some people gain a bunch of weight, some people lose, some it doesn’t affect at all. Want to hear your thoughts!
Carnivore has kept weight off and has healed my surgery fast.
I had 3 and a half parathyroids removed and when they checked my blood levels, my calcium shot up again. I'm at my wits end. Anyone know what I can do? Doctors don't even seem to know
My calcium is 10 . 5 I've bone loss docters won't treat thyroid also I've TMJ syndrome
Interesting. I've just had a parathyroidectomy.
Clara Sais how are you feeling now? My dr recommends to get this surgery, but I am worried:(
I have veenout of uork for three months due to brain fog anxiety bone pain
I had my parathyroidectomy a year ago and I feel worse then before I had it taken out they said it was rare for me because I was only 17
I’m having 4 small lumps removed and called they say doesn’t look diseased parathyroidecTom y. But no mention of any gland being removed. Doesn’t always mean gland removal???
How much bruising is normal?
How much it cost for the surgery please let me know.