What You Need to Know: Hyperparathyroidism with Dr. Herbert Chen

[@enfieldjohn101]

I'm glad that I watched this. I've suffered from insomnia and chronic depression for many years, even before I began suffering from chronic joint pain, overall itchiness, lessened ability to concentrate and focus, constant thirst, increased urination, dehydration, and tooth aches that led me to see my family doctor about it. This led to the doctor running comprehensive blood, urine and saliva tests which showed abnormally high calcium, low vitamin D, and abnormal nitrogen levels. Then, he referred me to an endocrinologist who did tests that showed high PTH of about 119. We tried treating for possible secondary hyperparathyroidism with diet adjustments and supplements of Vitamin D3 and potassium. After a year of that treatment, we saw lowering of PTH and calcium and elevation of Vitamin D, but the results didn't last. Six months after seeing what were hopeful signs that I was out of the woods, my PTH and calcium went back up again even though I was still following the low calcium diet and taking the supplements. They did imaging studies that showed osteopenia and abnormal absorption of the radioactive tracer in my lower right parathyroid gland. In about 21 days or so, I'm seeing an ear, nose and throat surgeon who does these parathyroid surgeries to see if he thinks I'm a good candidate for surgery or if there are other options, at least temporarily. On the one hand, I want to get it over with and have the surgery because my symptoms are getting worse as I now have nausea and acid reflux, increased thoughts of suicide or giving up, body aches all over especially in joints and mouth, increased memory recall difficulty and irritability. My ability to continue the work I used to do is greatly decreased and I've noticed that I'm having more trouble with social situations than I normally have had in the past. Thank you for this helpful video! I'm sharing it with others hoping that they will learn more about this.

[@shelleyw5951]

I hope you've gotten surgery to remove your adenoma. Living with this disease is horrendous. I just got surgery to remove my adenoma about two-and-a-half weeks ago. I was first tentatively diagnosed in the fall of 2020, but due to Covid and having to wait for surgery it has taken until now to get a very good surgeon who does lots and lots of surgeries, and was my researched person of choice to remove it here in BC Canada. My tumour was the size of a grape 2.1 cm and I've probably had it well over 10 years. My Parathyroid hormone during surgery went from over 12.2 to 2.9 after tumor removal. I was diagnosed in 2018 with inflammatory arthritis, most likely Psoriatic but with no specific markers and no sausage fingers, but fingers stiffen up up here and there no psoriasis only one quarter size patch of eczema on left elbow that I've had for years. Thankfully I didn't start on Methotrexate until last fall now that I read about how it can give people cancer and other horrid side effects. I know it's the first thing they give people for inflammatory arthritis, but I shouldn't have been put on this, without the Hyper parathyroidism being cured first. I let my rheumatologist know in the fall of 2022 before I went on it that I had a tumour. She was very dismissive and told me that my symptoms were not from my Parathyroid tumour. It has been very frustrating dealing with doctors for years though I am so grateful that my family doctor did finally catch this in the fall of 2020. I hear you on your symptoms friend and you have my empathy. I I really do know how you feel. I've spent the last three years outside of my continually reduced and now limited, because of constant severe pain and exhaustion ...working hours lying on my sofa depressed and in constant pain and I also developed erosive arthritis in my neck, more stenosis in my thoracic back, and severe stenosis in my lower back. the last couple years. I've had nonspecific bone and muscle pain for at least 10 years though. As soon as I woke up after the surgery the shooting pains in my elbows stopped. Had one brief one about 10 hours later and nothing since. This elbow pain that developed about 3 months ago was while I was on the Methotrexate. It has been horrible and has left my forearms very weak and painful especially my left side weird hurts to unplug a cord from the wall, or lift a coffee cup with that hand. The constant regular, random, pulsating bone pain all over my body has stopped. Unfortunately due to having to live with this for so long there's a lot of damage and pain from that, but at least now I can work to regain some bone strength and hopefully some improvement with pain. I'm going to ditch the Methotrexate and take all my calcium vitamin D, vitamin K and magnesium for the the foreseeable future and do the monitoring of my pth and calcium levels and see how I feel. My mental clarity is back and brain fog is gone along with many of the other horrible associated symptoms. Wait-and-see 😢 does not do anything for anyone with this illness and the depression and hopelessness living isolated with the constant pain, well it's just horrible horrible when you hyperparathyroidism.

[@enfieldjohn101]

@@shelleyw5951 I'm glad that you got such fantastic relief after surgery. Gives me hope. My symptoms have gotten worse since I posted my comment. No psoriasis yet but my fingertips dry out, crack near the nails and bleed. Very painful. We've bought a house after our tiny apartment's rent shot up to over $1000. Been great getting a new place, but also very frustrating that I havent been able do much each day to get the house ready to live in, move in and spruce the place up a bit. I feel like its taken more than twice as long as it would have before I got this condition. By the end of each day, Im just exhausted and ache all over. My wife is understanding and helps me. Tries to get me to take more breaks. My dad and a couple friends have been helping when they can. Without them, Id have had to hire everything done. I hope my surgery happens soon. Its just agony that I have to grit through to accomplish anything. Had another biopsy. This time, they sent samples to a place that does DNA testing to see if I also have thyroid cancer. If I do, surgeon will work on that at same time as parathyroid surgery. Thanks for the reply. Talking to others who have been through this helps.

[@lewis1016]

7 months ago, l suddenly started to lose weight… most of it muscle …I’m a 62 year old gym rat. Along with that came awful fatigue, constant peeing and muscle weakness. In 2 months, l lost 13 lbs. After seeing countless doctors, multiple tests and scans, it was determined l have normocalcimichyperparathyroidism. My calcium is normal, but PTH is high and have since found out i have osteoporosis. You are the first doctor to say that my weight loss and fatigue could be connected. You have given me hope. My surgery is next week. Fingers crossed this will help!

[@enfieldjohn101]

It would be great if researchers could figure out what causes HPT in the first place.

[@PatHaskell]

Starts at 6:50.

[@777greenice]

THIS is a SUPER INFORMATIVE video! Anyone who is questioning their "normal levels, normal high levels" in their PTH and Calcium, pay CLOSE attention to WHAT he says and explains in regard to rhis. Gosh this is such a good question and answer session after the initial talk/ informative session. Thank you Dr Chen!

[@donnaallgaier-lamberti3933]

Yes, very informative, thank you. I was just diagnosed with hyper parathyroidism, I had endometriosis ion my 30's and 40' (another endocrine issue..) I am now age 72. I was diagnosed with Autoimmune Hashimoto's' about 10 years ago and TOTALLY changed my diet and lifestyle. I have now gotten that condition under control (I even restructure my bone density by 6%.) and had was doing so well. Right now I feel like my body has betrayed me yet again. I am now realizing that my symptoms are fairly classic; exhaustion, bad sleep, frequent urination, heartburn/GERD) high calcium and high PTH. Fortunately, I don't have any mental health issues with this condition. I am currently in therapy for another reason and being in therapy allows me to vent as needed.

[@enfieldjohn101]

It's fascinating to see that some people have their hyperparathyroidism show up other places in their body besides their throat. Amazing.

[@kimberlina68]

Thank you so much for your work with Endocrine glands❣️

[@user-hy2qo6lj2q]

2.5 years after my parathyroidectomy. Had the doctor test pth and calcium and vitamin d levels just because I was told to add them anytime they do any blood tests at least once a year. Was not expecting anything unusual but Pth was high, vitamin d was low, calcium normal. Doctor prescribed vitamin d supplementation for 3 months to rule out secondary hpt. Seems like crazy bad luck to go from primary to secondary but at least that doesnt mean surgery again. So worried it is really back. Noticed so many symptoms returning before this result but I played them all off. I was cured! Have been feeling awful but didn't want to believe it could be true. My whole 20s were ruined by the disease because Doctors didn't look into why a young woman had kidney stones and extreme bone pain but eventually found the proof by accident . So scared it is back and of being made to jump through hoops just to get the treatment I need all over again.

[@epic5945]

I had hyperparathyroidism in 2017 with a PTH level of 489 and it caused severe osteoporosis resulting in my right hip breaking. My bones never really recovered and my osteoporosis worsened after surgery.

[@fruitypie3219]

I've just had the surgery done and I feel like death

[@znmm2588]

How do you feel now?