Wonderful video! It took really pushing back on doctors writing off my symptoms as allergies which they were not! I had eventually to ask my primary for a referral to an ENT and an endocrinologist who ordered an ultrasound which finally revealed an adenoma on my parathyroid. The advocacy it took to get a proper diagnosis was exhausting and felt very overwhelming as well as unfair…. My best take away is to never stop advocating for yourself even if doctors think you are just being annoying… which they do!! I wish more doctors were trained to do the labs to look for MEN type conditions…. This almost went unfound. I had to be relentless in my attempts to convince doctors that I had the symptoms I had ! Bone pain, thirst, headaches, aching joints and tired out by simple outings like a trip to the store made me want to go to bed for the rest of the day. Thank you for this informative video!!
Just diagnosed, I have to wait months to get into an endocrinologist. 😢 My chronic kidney disease decided to order a Iodine Nuclear Study which revealed a hot and cold gland. 😢 The waiting is a killer in addition to the bone pain! 💔🦴🦴
Thank you for this information video. I am having surgery this December and so ready to feel better. I also have stage 3B kidney disease. Stone removal (Lipotropsey) 10 months apart. Never give up pushing for results. You know your body and what's normal and what's not.
I’m so glad that there are more and more doctors talking about this disease on UA-cam. I was just diagnosed with Primary Hyperthyroidism but I suffered with symptoms of extreme fatigue and anxiety for a at least 2 years. I had to change my primary care physicians 5 times only because they didn’t understand my symptoms until I finally had a chance to talk to my endocrinologist who did a 24hour urine test and checked for my calcium and later parathyroid. Both of which were very high. I have my surgery scheduled at a parathyroid surgery center soon. The surgery can be simple in the hands of an experienced surgeon or it can become complicated with a general surgeon who does other surgeries. I look forward to finally feel normal again after my surgery. It’s been too painful both emotionally and physically.
Thank you for your thoughtful explanation of hyperparathyroidism. Since my surgeries to remove 2 adenomas 9 months ago I am feeling better everyday. Wish I had known about this disease 15 years ago before it caused me so much damage.
I've been sharing videos about hyperparathyroidism to help my family and other people understand this almost ignored health problem better. Thank you for making this video! It's one of the best ones I've seen so far. I've tried to make videos about it myself, but since I'm suffering from the disease and it is affecting my mental capabilities now as well as my muscles, nerves, digestion etc. it has proven to be a lot harder to do that than I thought it would be. Your video is much better than mine in terms of explaining the disease to people. I do hope people watch mine too though because I do manage to express what having the disease actually feels like and what it does to your life. In retrospect, my case may have started as much as ten years ago when I started getting gradually worsening chronic constipation and heartburn that nothing seemed to cure for any length of time. That culminated in appendicitis and I had to have my appendix removed before it burst. I wonder if there is a link between appendicitis and parathyroid disorders. After my appendectomy, I felt much better for a couple of years, but then I started having digestive issues again. Not constipation thank goodness, but indigestion, bloating, feeling achy and generally unwell. I also started having more trouble than usual with insomnia, headaches and body aches. When it got to the point that I wasn't sleeping at all until I'd basically pass out from exhaustion towards morning, my wife took me to our GP who ran full blood and urine tests. My blood serum calcium and my PTH were very high. This was consistent over the course of three tests, one taken every three months (I think, I have a hard time remembering the specifics). My vitamin D was low, so he prescribed D supplements and a multivitamin that didn't contain calcium as well as telling me to make an effort to avoid eating high calcium foods - giving me a list that included things that surprised me like almonds, spinach and stone fruits. This really seemed to help for about a year and my blood calcium and PTH dropped close to normal. Then, however, they started elevating again and my symptoms went from gradually getting better to getting worse along with new symptoms such as skin itching everywhere, joint and muscle pain, memory loss, mental fog, irritability and depression (that were worse than usual - took a while for friends and family to notice they were worse since I've always been a rather irritable, depressed person). Long story short, between then and now, I have had many tests done by an endocrinologist and an ear nose and throat surgeon - several types of imaging scans, more blood and urine tests, palpations, etc. and they have finally decided what to do in terms of surgery. For a while, there was the possibility of thyroid cancer as well, but finally a DNA test ruled that out for now. I should have my surgery a couple of months from now to remove one parathyroid that has an adenoma on it. Hopefully, that will take care of it. I can't stress enough to people how serious this disease is and how it affects one's life. Just typing this comment is making my hands, forearms and shoulders sore. I've had to take several breaks to finish it. I've also had to edit it a few times due to grammar mistakes that I didn't use to make before all of this started. Sure, there are worse conditions out there and I don't diminish any of them, but this is truly an awful way to live that I wouldn't wish on anyone. I hope that everyone who is having any of these symptoms as well as anyone who cares for them will see your video and take action.
I have gained about five to ten pounds since I had my surgery. I give a range here because my weight varies about five pounds or so from month to month anyway. But I have gained a little bit. I think it is because I can now eat a more normal diet. On some days, my appetite is a little better than it was before surgery, but I still have days when I feel a little nauseous and don't eat much. Before surgery, I was having to try to avoid calcium rich foods which is a long list of things. I also had days when I wouldn't eat much of anything because of how nauseous, bloated, etc. I felt. Now that I can have a limited amount of them again, I'm eating better. I was down to 170 pounds when I had the surgery. Now, I'm up to about 180-185 which is just about right for a six foot one-inch-tall guy. I try to exercise but have never been very into it. I go for walks and do as much in my garden and flower beds myself as I can. @@AlMo20179
I had the surgery in July and it is December now. I still have bad days when I wonder if I've made any progress at all. On the good days, I do feel a little better in terms of my gastrointestinal problems and can eat a bit more normally than I could before surgery. I still have days when I feel ill and feel like I need to avoid calcium rich foods for a day or two. When I do have any cheese, milk etc. I don't have nearly as much as I used to before I started having problems. A glass of Lactaid milk or a bowl of cereal with that in it or a little thing of yogurt or a couple slices of pizza or a sandwich with cheese on it is still about all the dairy I have in a day. It's an improvement over avoiding dairy altogether though. I started on the Lactaid milk and yogurt when I noticed that drinking regular milk and eating more than a little cheese made me feel bloated and ill later on. I never had problems with dairy before I started on the road to needing an appendectomy. Growing up, I'd drink two glasses of milk a day, have cereal with milk on it, eat as much cheese as I wanted etc. so I didn't grow up lactose intolerant. But avoiding calcium rich foods for four years has probably changed my gut bacteria. In terms of nerves, aches, pains, mental state etc. that hasn't improved as much yet. I still hurt all over and find even basic daily chores difficult. Still hurts to type or open a jar or use pruners etc. I have good days when I feel like doing things but by the end of the day, I'm exhausted and very sore the next day. Sometimes, have short periods of clarity when I can remember things a bit better, but it doesn't last. I also feel depressed and confused sometimes. Maybe I'm slightly better than I was back in July, but sometimes, it is hard to tell. At least I'm not getting any worse. My doctors tell me not to get worried or depressed about not feeling all better right away. They say that I should give myself a couple of years before there is any concern that the surgery didn't help as much as it should. They say that if nothing else, I shouldn't get any worse. I shouldn't wind up with organ failure nor brittle bone disease, so that's something to be thankful for. I remind myself of that when I'm feeling like the surgery was all for nothing. Thanks for asking. It does me good to talk (or write) about this and for people to ask how I am. Sometimes, I feel like I'm either a burden or like I'm being forgotten about by the people around me. Not sure which feeling is worse. I would say to anyone thinking about whether or not they want to go ahead with the parathyroid surgery that has been recommended to them that they really should do it because the problems that hyperparathyroidism causes will only continue to get worse until they do. I would caution people not to expect to feel all the way better right away after surgery. Maybe you will be one of the lucky ones who does because the condition was found soon enough that the damage hasn't become too pervasive and maybe because you were otherwise very healthy before the parathyroid glands decided to go haywire, but then again, maybe you won't. Either way, the surgery needs to be done to keep things from getting worse. @@fatihturan2924
I was getting so tired to the point I couldn't do anything besides going to work. Slowly negatieve thoughts and anxiety crippled in. Then insomnia and pain everywhere. I cried to so many doctors about muscle and bone pain. Finally diagnosed with depression and anxiety. Fatigue was getting wose and worse. I reached a point where I wasn't able to brush my hair, get dressed. And yet, there is nothing physically wrong with me. I told my dr of thinking of suicide... Then she told me she will check one more thing - PTH even though my calcium and vit D are normal. My PTH results came back high. I got my treatment and my life back. Kidney stones at age 17 , diagnosis at 35....
I have exactly this. My doctor doesn’t think that the anxiety disorder I suddenly have, is caused by this but I beg to differ!! This disease can cause all sorts
I want to say Thankyou so much for this. I’ve been diagnosed with hyperparathyroidism and I have a benign tumour that I’m due to have taken out. I have developed an anxiety disorder as well as really bad digestive issues and I think it is due to this, however my consultant said extra calcium doesn’t equate to anxiety symptoms but it does!! And this is evidence ♥️
I can attest to this as well. Our endocrine system has a huge influence over not just our bodies, but our mind's mental state as well. The body and mind are intimately connected. Growing up, I was always a sensitive, slightly depressed kid, but by the time I was in my 20's, I was doing fine mentally. I had a good 20 years of very good mental health where I was happy, productive and everything. Then, when I turned 45, I started having severe constipation, irritable bowls, indigestion etc culminating in having to have my appendix out before it burst. Looking back on it now and talking with my doctors, that is likely when my problem with my parathyroid started. It's also about the time that my mental state began to decline. Being physically miserable certainly didn't make me happy, but it was worse than that. I started feeling very depressed. I used to be a very sharp, perceptive guy with a phenomenal long term and short term memory - almost photographic. But my memory recall began to decline and I started having days when I couldn't remember what I was doing while I was doing it. I've always been a bit of a nightowl, but I got to the point where I wasn't sleeping at all - just passing out from exhaustion. I also started hurting all over, especially my major joints. That's when my wife talked me into seeing our family doctor who did a comprehensive blood test that found the off the charts PTH and calcium levels and recommended me to an endocrinologist who tested me in many ways before diagnosing me with primary hypoparathyroidism. I had the surgery this past July. It's December now and the best I can say is that I'm not getting any worse. On some days, my appetite is almost normal and I don't feel ill, so I can eat kind of normally again without trying to avoid calcium rich foods. I hope that you have the surgery and get the tumor removed. I can't say that you'll feel all better right away, but at least it will keep the problem from getting any worse.
I had the surgery in July last year. I still ache all over, especially my major joints like shoulders and hips. I still dont sleep well. I sometimes still have brain fog though lucid moments are more frequent now. Im still more depressed, anxious, irritable and moody than usual. I tried returning to a more normal diet, but found after five years of avoiding high calcium foods that Im lactose intolerant now. I take lactaid tablets when I eat dairy. I still have to keep vitamin D and calcium vitamins handy for when I have hypocalcemia times and my hands and face go numb. I take centrum multi vitamins daily ever since the surgery try to keep my nutrition balanced. Seems to be working most of the time. Thanks for asking. How are you? @@carmella88
THANK YOU! I am in the process of being diagnosed. I am also an RN who attributed my symptoms to work and stress and having had covid. I am looking forward to being treated and feeling like myself again.
Me too!! I am a RN of 18 years. Covid a few times also. After March 2022 (my last of 3) I failed. Hyperparathyroidism. I am scheduled for a for surgery for an a parathyroidectomy in a few days. I hate being a patient but ready to get my life back. So many symptoms on a random finding.
Similar story here: high school teacher who attributed his symptoms to work-related stress. I have had consistent high-normal and occasionally high calcium in my blood work that none of my doctors ever investigated. I didn't even know my symptoms and calcium levels could be related until I started doing my own research out of sheer desperation. So grateful for videos like this!
@@NonSequitur15 Keep fighting to get to the bottom of this. I was sent to an Endocrinologist who basically blew me off. But a good surgeon was recommended and did the right test.
Very interesting! All four of my parathyroids were bad. They chopped them up and implanted in my forearm. We are two months out from surgery. Can’t get meds dialed in. Having to do regular blood work to check numbers. Looking forward to leveling things off and feeling improvement soon.
I’ve heard you lose weight because you feel so much better and are more active. I’m about to have the surgery and I’m hoping it cures my ulcers and intestinal swelling. I have over a dozen debilitating symptoms other than those, but those are the symptoms that I think caused me to gain weight due to inflammation. @@AlMo20179
I had SEVERE vitamin D defiency twice in a 2 year period and now my body keeps getting kidney stones. I also do have anxiety , forgetfulness and poor digestion.
I am just diagnosed with hyperparathyroidism. Tired. Started gaining weight. I eat fruit and vegetables and ride my e exercise bike. My doctor is waiting for an endocrinologist to see me. It's been 7 months. I just lost 50 pounds. I'm hoping to lose the weight and feel better after it's taken out.
I am age 72 and I work with a Functional Physician and have just been diagnosed with hyperthyroidism. I have been treating my Autoimmune Hashimoto's for 10 years. Recently I have begun to be more reactive to old foods that previously had no issue with a lot of burping/belching and pressure when laying down. I have been extremely exhausted, not sleeping well and frequent night urinating. My calcium is fine, but my PTH is high. I now have an apt. with an endo for further studying and more tests. (My calcium was high for two blood labs and then it went down again.) Your explanation really helped me understand my situation. My Vitamin D level is 82.
Thank you for helping me understand what is happening in my own body better. The doctor testing this is expecting this to go down but after watching this I’m not so sure of that. In my case I had a ‘kidney injury’ and they did the panel while investigating this, particularly as I have a complex history involving being made sick and played sick for medicine I didn’t need etc. so lots of stuff was done and trials and off label prescriptions and some things I know and some I don’t know nearly enough. There are parts of the issue that seems related to a medication but too many questions too. I have hashimotos as well so… at first I thought they were talking about my actual thyroid. The fact nobody tested for this even though I have hashimotos and overlap is known but I get tested for diabetes every time because I’ve risk factors for that… like… why not this? Before I ended up in the hospital with my kidneys blown up like balloons? I mean obviously I’ve issues going on with that but still. More needs known about this I think maybe this should be a more standard test.
I had a messed-up surgery in Nov. 2021. Lost an extra (good) Parathyroid beside the Adenoma, and I am pretty sure, that the vagus nerve was severed. I have lost trust and do the supplementation on my own. So far - so ???! The supplementation with calcium, Vit. D3, B 12, C, Folate(MTHFR) works pretty well, even without blood work. The vagus nerve however, causes severe digestion problems. I am still hoping to find some general directions on the internet somewhere. 🤢😵💫😥 I am 84 and will not find medical help in a rural area nearby in my country.
What do you do if your doctor ignores high blood calcium? In the last two years, my calcium level is in the high range and I’ve have had high a pth reading. My doctor thinks this is normal for me. I’m confused and concerned.
Whats even more complicated is having untreated multiple endocrine neoplasia type 1. Its been the most difficult thing i have ever lived with in my life. I was denied genetic testing but i know i have it. Its traumatizing, the symptoms are debilitating
@@scarba because I only have a lung neuroendocrine tumor, I don't have a parathyroid pituitary or pancreatic tumor but some families only have carcinoid tumors every family is different.
@@suzysmith4254100% of MEN1 patients will develop parathyroid tumours in their lifetime, so you should get it a regular ultrasound and full bloodwork, also for adrenal and pancreatic hormonal changes. So far I’ve had my adrenal gland and one parathyroid gland removed and due to have the rest except one half removed. I’ve also had my left adrenal removed and I have multifocal tumours on my pancreas which gets checked twice yearly. My sister has MEN1 too and she has adrenal tumour, parathyroid and thyroid, lung like yourself and pituitary and pancreas. She’s due her first surgery soon for parathyroid adenome. It’s a real pain having a ton of tests done and all the surgeries and hormone replacements but we’re still alive. Be grateful it’s neuroendocrine lung tumour which can be cured by removal. If you only have a neuroendocrine lung tumour then it can be sporadic and not familial and if you don’t have one of the classic ppps, pituitary, pancreas or parathyroid tumours it’s most likely not MEN1. Be glad if it’s not. Then you just have a one off sporadic removable tumour. I wish you luck.
@@suzysmith4254 it’s not every family that’s different but every individual is different within the family and some MEN1 is not familial and inherited but a sporadic mutation. It’s far more likely statistically that you just have an ordinary neuroendocrine tumour and that’s a better thing to have than MEN1. When do you get your tumour removed or is it just watch and wait?
@Dr. Alan Christianson Please help me. I was diagnosed with Acute Lymopcitic Leukemia back in 2003. ( Remissions for almost 16 years now) I never had anxiety, didn't know what it was. Than I had my first panic attack and went to the ER. The ER doctor told me the reason anxiety started in me was from all the Prednisone prescribed during my 18 months cancer treatment. He told me that, my Adrenal Glands were effected and that is what has been causing my anxiety. I have suffered with anxiety and panic attacks for the last 16 years. If you have any advice please let me know. Thank you.
I'm having awful symptoms and have the barely high calcium and high PTH. My primary care doctor sent me to an endocrinologist, who seems intent on saying my problem is Vitamin D!. It was low in the past but now my Vitamin D is normal! Should I have been sent to a surgeon, too, instead of to an endocrinologist? Also, what about maintaining the calcium levels with Vitamin K2? I was also recently diagnosed with diastolic heart failure. I'm also having awful insomnia!
@@carmella88 I had surgery September 27 to remove two parathyroid glands and half my thyroid. The recovery is slow, but I am feeling much better. Thank you for asking!
Honestly, you are going to profit more from surgery than the surgeon. You will get your life back. I understand your thought process. But try to think of the bigger picture. Getting intravenous calcium blockers for life really sucks! And that is more profitable for them. The surgery is like 15 minutes.
Im tired all the time, my parathyroid is 29 and my blood calcium is 9.2...not sleeping, broken femur 2 years ago was a spontaneous fracture, and have osteoporosis...why am I so tired?
Hello Doctor. I am facing the same issue currently and have changed more than 10 doctors. But noone could understand my situation and pain for almost 2 years. Its been two months now i m having hypertension, palpitations, sudden weight loss, infections, elevated RDW and Anemia. But doctors said it can be due to stress or anxiety or IBD 😢 My Hb reached 9.9 with high RDW and no doctor could diagnose the issue. Recently my bones started hurting badly and I had fatigue which hindered my day to day activities. FINALLY, I met an internal medicine doctor who really understood my situation and did PTH test. and its value is 117. Also my calcium is 9.8 and phosphorus 1.2. What should i do next?
I am out of work due to my symptoms being so severe.I have been getting steadily worse for several months and my doctor tested my pts which sometimes really high but also can be normal.k sm a 52 yr old woman that had a partial hysterctomy 19 yrs ago. I was told i had significant bood in my urine .i wasnt seeing any blood.my doctor referred me to an endocrinologist who first put me on a high dose of vit d to find out yhe relationship between that and my calcuum.i nos can feel two large tumors in my chest and my esophagus.
Enjoyed your vid but I have to disagree regarding heredity playing a role. I think hyperparathyroidism is familial, I have it as well as my sister, her daughter and her son. We lived many miles apart most of our adult lives, different environments and diets for sure. Perplexing at times. Thank you and God bless you.
My PTH levels are sort of all over the map. Sometimes significantly elevated, sometimes in the middle of the canned reference range. Recently I had problems with huge amounts calcium crystals, blood, and white blood cells getting tossed in the urine. I'm not sure what to make of it.
I have 129 PTH but normal calcium. Do have stage 3 kid disease. Lots of symptoms of Hyperparathyroidism. Deemed secondary. However, I have osteo. Surgery soon.
I have no worked for almost a year! High parathyroid normal calcium. No diagnosis or treatment! Depression anxiety hair loss digestion issues. Kidney stones yet still not sent to a specialist!!! Because my calcium is normal😢
Can you clarify the debate on iodine for hashimoto vs not, some say it will trigger more TPO antibodies bc taking it will increase TPO enzymes? Some say its necessary for thyroid not matter what, need lugol. But what if taking lugol 10-22mg makes your thyroid suddenly feel sore?
@@kmoon50 vocal cords, no. Recurrent Laryngeal nerve, there is a small risk. It’s best to have a surgeon who focuses on this like those of the Norman parathyroid center.
Thank you for directing me to the video on your Office Hours Nov1, 2021. I have my annual physical on November 23, 2021 I will discuss this with him. I may also for an endocrinologist that specializes in the thyroid. You have given me hope again.
Wonder if diet and lifestyle can help reduce hyperparathyroidism happening. Read that sometimes taking vite D can reduce Ca serum from PTH, but many have high 'active' vite D(1,25OH) . Can eating more calcium foods help reduce high PTH? Also just read on selfdecode, can be related to aldosterone. Also that exercise can effect PTH level... Wonder if acupressure may help, as it gets lymph circulation up. so checking kidney, PTH, vite D, TY for info
Diet and lifestyle can’t cure a tumor. I’ve taken thousands of dollars worth of supplements per month for years and still felt like death. Surgery is the only cure for this if you have it.
I’ve done a lot of research about hyperparathyroidism and a skilled surgeon can remove the diseased gland in less than 20 minutes and you would be good as new. You have 4 glands and from what I understand you would have only 1 maybe 2 glands that need to be removed. And you can normally with only 1/2 gland.
Absolutely right! I’m amazed so many people are willing to leave a diseased gland in when they have other parathyroid glands that are healthy and can do the job. @@dianalarkin9483
Wonderful video!
It took really pushing back on doctors writing off my symptoms as allergies which they were not!
I had eventually to ask my primary for a referral to an ENT and an endocrinologist who ordered an ultrasound which finally revealed an adenoma on my parathyroid.
The advocacy it took to get a proper diagnosis was exhausting and felt very overwhelming as well as unfair….
My best take away is to never stop advocating for yourself even if doctors think you are just being annoying… which they do!!
I wish more doctors were trained to do the labs to look for MEN type conditions…. This almost went unfound. I had to be relentless in my attempts to convince doctors that I had the symptoms I had ! Bone pain, thirst, headaches, aching joints and tired out by simple outings like a trip to the store made me want to go to bed for the rest of the day.
Thank you for this informative video!!
You're welcome. Best of luck on your health journey.
Just diagnosed, I have to wait months to get into an endocrinologist. 😢 My chronic kidney disease decided to order a Iodine Nuclear Study which revealed a hot and cold gland. 😢 The waiting is a killer in addition to the bone pain! 💔🦴🦴
Thank you for this information video. I am having surgery this December and so ready to feel better. I also have stage 3B kidney disease. Stone removal (Lipotropsey) 10 months apart. Never give up pushing for results. You know your body and what's normal and what's not.
I’m so glad that there are more and more doctors talking about this disease on UA-cam. I was just diagnosed with Primary Hyperthyroidism but I suffered with symptoms of extreme fatigue and anxiety for a at least 2 years. I had to change my primary care physicians 5 times only because they didn’t understand my symptoms until I finally had a chance to talk to my endocrinologist who did a 24hour urine test and checked for my calcium and later parathyroid. Both of which were very high. I have my surgery scheduled at a parathyroid surgery center soon. The surgery can be simple in the hands of an experienced surgeon or it can become complicated with a general surgeon who does other surgeries. I look forward to finally feel normal again after my surgery. It’s been too painful both emotionally and physically.
agreed on all points - glad it was caught!
How are you and how did surgery go?
I had the surgery because my PTH was 169 and calcium level was 10.8 and had a big kidney stone. I feel much better now.
So glad you are feeling better.
Thank you for your thoughtful explanation of hyperparathyroidism. Since my surgeries to remove 2 adenomas 9 months ago I am feeling better everyday. Wish I had known about this disease 15 years ago before it caused me so much damage.
I've been sharing videos about hyperparathyroidism to help my family and other people understand this almost ignored health problem better. Thank you for making this video! It's one of the best ones I've seen so far. I've tried to make videos about it myself, but since I'm suffering from the disease and it is affecting my mental capabilities now as well as my muscles, nerves, digestion etc. it has proven to be a lot harder to do that than I thought it would be. Your video is much better than mine in terms of explaining the disease to people. I do hope people watch mine too though because I do manage to express what having the disease actually feels like and what it does to your life.
In retrospect, my case may have started as much as ten years ago when I started getting gradually worsening chronic constipation and heartburn that nothing seemed to cure for any length of time. That culminated in appendicitis and I had to have my appendix removed before it burst. I wonder if there is a link between appendicitis and parathyroid disorders.
After my appendectomy, I felt much better for a couple of years, but then I started having digestive issues again. Not constipation thank goodness, but indigestion, bloating, feeling achy and generally unwell. I also started having more trouble than usual with insomnia, headaches and body aches. When it got to the point that I wasn't sleeping at all until I'd basically pass out from exhaustion towards morning, my wife took me to our GP who ran full blood and urine tests. My blood serum calcium and my PTH were very high. This was consistent over the course of three tests, one taken every three months (I think, I have a hard time remembering the specifics). My vitamin D was low, so he prescribed D supplements and a multivitamin that didn't contain calcium as well as telling me to make an effort to avoid eating high calcium foods - giving me a list that included things that surprised me like almonds, spinach and stone fruits. This really seemed to help for about a year and my blood calcium and PTH dropped close to normal. Then, however, they started elevating again and my symptoms went from gradually getting better to getting worse along with new symptoms such as skin itching everywhere, joint and muscle pain, memory loss, mental fog, irritability and depression (that were worse than usual - took a while for friends and family to notice they were worse since I've always been a rather irritable, depressed person). Long story short, between then and now, I have had many tests done by an endocrinologist and an ear nose and throat surgeon - several types of imaging scans, more blood and urine tests, palpations, etc. and they have finally decided what to do in terms of surgery. For a while, there was the possibility of thyroid cancer as well, but finally a DNA test ruled that out for now. I should have my surgery a couple of months from now to remove one parathyroid that has an adenoma on it. Hopefully, that will take care of it.
I can't stress enough to people how serious this disease is and how it affects one's life. Just typing this comment is making my hands, forearms and shoulders sore. I've had to take several breaks to finish it. I've also had to edit it a few times due to grammar mistakes that I didn't use to make before all of this started. Sure, there are worse conditions out there and I don't diminish any of them, but this is truly an awful way to live that I wouldn't wish on anyone.
I hope that everyone who is having any of these symptoms as well as anyone who cares for them will see your video and take action.
Thank you for watching.
@@DrChristianson what about weight changes after surgery? Ive heard you can gain weigh after srg. Any experience with it? Thanks
How are you now ?
I have gained about five to ten pounds since I had my surgery. I give a range here because my weight varies about five pounds or so from month to month anyway. But I have gained a little bit. I think it is because I can now eat a more normal diet. On some days, my appetite is a little better than it was before surgery, but I still have days when I feel a little nauseous and don't eat much. Before surgery, I was having to try to avoid calcium rich foods which is a long list of things. I also had days when I wouldn't eat much of anything because of how nauseous, bloated, etc. I felt. Now that I can have a limited amount of them again, I'm eating better. I was down to 170 pounds when I had the surgery. Now, I'm up to about 180-185 which is just about right for a six foot one-inch-tall guy. I try to exercise but have never been very into it. I go for walks and do as much in my garden and flower beds myself as I can. @@AlMo20179
I had the surgery in July and it is December now. I still have bad days when I wonder if I've made any progress at all. On the good days, I do feel a little better in terms of my gastrointestinal problems and can eat a bit more normally than I could before surgery. I still have days when I feel ill and feel like I need to avoid calcium rich foods for a day or two. When I do have any cheese, milk etc. I don't have nearly as much as I used to before I started having problems. A glass of Lactaid milk or a bowl of cereal with that in it or a little thing of yogurt or a couple slices of pizza or a sandwich with cheese on it is still about all the dairy I have in a day. It's an improvement over avoiding dairy altogether though.
I started on the Lactaid milk and yogurt when I noticed that drinking regular milk and eating more than a little cheese made me feel bloated and ill later on. I never had problems with dairy before I started on the road to needing an appendectomy. Growing up, I'd drink two glasses of milk a day, have cereal with milk on it, eat as much cheese as I wanted etc. so I didn't grow up lactose intolerant. But avoiding calcium rich foods for four years has probably changed my gut bacteria.
In terms of nerves, aches, pains, mental state etc. that hasn't improved as much yet. I still hurt all over and find even basic daily chores difficult. Still hurts to type or open a jar or use pruners etc. I have good days when I feel like doing things but by the end of the day, I'm exhausted and very sore the next day. Sometimes, have short periods of clarity when I can remember things a bit better, but it doesn't last. I also feel depressed and confused sometimes.
Maybe I'm slightly better than I was back in July, but sometimes, it is hard to tell. At least I'm not getting any worse. My doctors tell me not to get worried or depressed about not feeling all better right away. They say that I should give myself a couple of years before there is any concern that the surgery didn't help as much as it should. They say that if nothing else, I shouldn't get any worse. I shouldn't wind up with organ failure nor brittle bone disease, so that's something to be thankful for. I remind myself of that when I'm feeling like the surgery was all for nothing.
Thanks for asking. It does me good to talk (or write) about this and for people to ask how I am. Sometimes, I feel like I'm either a burden or like I'm being forgotten about by the people around me. Not sure which feeling is worse.
I would say to anyone thinking about whether or not they want to go ahead with the parathyroid surgery that has been recommended to them that they really should do it because the problems that hyperparathyroidism causes will only continue to get worse until they do. I would caution people not to expect to feel all the way better right away after surgery. Maybe you will be one of the lucky ones who does because the condition was found soon enough that the damage hasn't become too pervasive and maybe because you were otherwise very healthy before the parathyroid glands decided to go haywire, but then again, maybe you won't. Either way, the surgery needs to be done to keep things from getting worse. @@fatihturan2924
I was getting so tired to the point I couldn't do anything besides going to work. Slowly negatieve thoughts and anxiety crippled in. Then insomnia and pain everywhere. I cried to so many doctors about muscle and bone pain. Finally diagnosed with depression and anxiety. Fatigue was getting wose and worse. I reached a point where I wasn't able to brush my hair, get dressed. And yet, there is nothing physically wrong with me. I told my dr of thinking of suicide... Then she told me she will check one more thing - PTH even though my calcium and vit D are normal. My PTH results came back high. I got my treatment and my life back. Kidney stones at age 17 , diagnosis at 35....
I have exactly this. My doctor doesn’t think that the anxiety disorder I suddenly have, is caused by this but I beg to differ!! This disease can cause all sorts
Did you have the surgery?How are you now ?
So glad that you are feeling better! Parathyroid surgery can really be a lifesaver.
Have you had bloodwork done to find out your calcium, vit d, and pth?@@hanjnk
I want to say Thankyou so much for this. I’ve been diagnosed with hyperparathyroidism and I have a benign tumour that I’m due to have taken out. I have developed an anxiety disorder as well as really bad digestive issues and I think it is due to this, however my consultant said extra calcium doesn’t equate to anxiety symptoms but it does!! And this is evidence ♥️
I can attest to this as well. Our endocrine system has a huge influence over not just our bodies, but our mind's mental state as well. The body and mind are intimately connected. Growing up, I was always a sensitive, slightly depressed kid, but by the time I was in my 20's, I was doing fine mentally. I had a good 20 years of very good mental health where I was happy, productive and everything.
Then, when I turned 45, I started having severe constipation, irritable bowls, indigestion etc culminating in having to have my appendix out before it burst. Looking back on it now and talking with my doctors, that is likely when my problem with my parathyroid started. It's also about the time that my mental state began to decline. Being physically miserable certainly didn't make me happy, but it was worse than that. I started feeling very depressed. I used to be a very sharp, perceptive guy with a phenomenal long term and short term memory - almost photographic. But my memory recall began to decline and I started having days when I couldn't remember what I was doing while I was doing it. I've always been a bit of a nightowl, but I got to the point where I wasn't sleeping at all - just passing out from exhaustion. I also started hurting all over, especially my major joints. That's when my wife talked me into seeing our family doctor who did a comprehensive blood test that found the off the charts PTH and calcium levels and recommended me to an endocrinologist who tested me in many ways before diagnosing me with primary hypoparathyroidism.
I had the surgery this past July. It's December now and the best I can say is that I'm not getting any worse. On some days, my appetite is almost normal and I don't feel ill, so I can eat kind of normally again without trying to avoid calcium rich foods.
I hope that you have the surgery and get the tumor removed. I can't say that you'll feel all better right away, but at least it will keep the problem from getting any worse.
How old are u. Have u had the surgery yet? What other kind of pains do you have
I had the surgery in July last year. I still ache all over, especially my major joints like shoulders and hips. I still dont sleep well. I sometimes still have brain fog though lucid moments are more frequent now. Im still more depressed, anxious, irritable and moody than usual.
I tried returning to a more normal diet, but found after five years of avoiding high calcium foods that Im lactose intolerant now. I take lactaid tablets when I eat dairy. I still have to keep vitamin D and calcium vitamins handy for when I have hypocalcemia times and my hands and face go numb. I take centrum multi vitamins daily ever since the surgery try to keep my nutrition balanced. Seems to be working most of the time. Thanks for asking. How are you? @@carmella88
THANK YOU! I am in the process of being diagnosed. I am also an RN who attributed my symptoms to work and stress and having had covid. I am looking forward to being treated and feeling like myself again.
Me too!! I am a RN of 18 years. Covid a few times also. After March 2022 (my last of 3) I failed. Hyperparathyroidism. I am scheduled for a for surgery for an a parathyroidectomy in a few days. I hate being a patient but ready to get my life back. So many symptoms on a random finding.
Similar story here: high school teacher who attributed his symptoms to work-related stress. I have had consistent high-normal and occasionally high calcium in my blood work that none of my doctors ever investigated. I didn't even know my symptoms and calcium levels could be related until I started doing my own research out of sheer desperation. So grateful for videos like this!
@@NonSequitur15 Keep fighting to get to the bottom of this. I was sent to an Endocrinologist who basically blew me off. But a good surgeon was recommended and did the right test.
Very interesting! All four of my parathyroids were bad. They chopped them up and implanted in my forearm. We are two months out from surgery. Can’t get meds dialed in. Having to do regular blood work to check numbers. Looking forward to leveling things off and feeling improvement soon.
Please don"t neglect normal calcemic hyperparathyroidism!!!!
Why? Please explain
I had my surgery 10/29/21. I’m sore but feel a big huge difference in my body. This was so informative. Thank you
Has your weight changed? I’ve heard many gain weight after surgery
I’ve heard you lose weight because you feel so much better and are more active. I’m about to have the surgery and I’m hoping it cures my ulcers and intestinal swelling. I have over a dozen debilitating symptoms other than those, but those are the symptoms that I think caused me to gain weight due to inflammation. @@AlMo20179
I had SEVERE vitamin D defiency twice in a 2 year period and now my body keeps getting kidney stones. I also do have anxiety , forgetfulness and poor digestion.
I am just diagnosed with hyperparathyroidism. Tired. Started gaining weight. I eat fruit and vegetables and ride my e exercise bike. My doctor is waiting for an endocrinologist to see me. It's been 7 months. I just lost 50 pounds. I'm hoping to lose the weight and feel better after it's taken out.
I only found out I had hyperparathyroidism after i suffered a stroke two years ago. You are the first to connect the two
I am age 72 and I work with a Functional Physician and have just been diagnosed with hyperthyroidism. I have been treating my Autoimmune Hashimoto's for 10 years. Recently I have begun to be more reactive to old foods that previously had no issue with a lot of burping/belching and pressure when laying down. I have been extremely exhausted, not sleeping well and frequent night urinating. My calcium is fine, but my PTH is high. I now have an apt. with an endo for further studying and more tests. (My calcium was high for two blood labs and then it went down again.) Your explanation really helped me understand my situation. My Vitamin D level is 82.
Dr. Christianson, you make total sense. I thought the constipation was due to my age (61). I also have to be glutton free, no gmo, no dairy, ect.
Thank you for helping me understand what is happening in my own body better. The doctor testing this is expecting this to go down but after watching this I’m not so sure of that.
In my case I had a ‘kidney injury’ and they did the panel while investigating this, particularly as I have a complex history involving being made sick and played sick for medicine I didn’t need etc. so lots of stuff was done and trials and off label prescriptions and some things I know and some I don’t know nearly enough. There are parts of the issue that seems related to a medication but too many questions too.
I have hashimotos as well so… at first I thought they were talking about my actual thyroid. The fact nobody tested for this even though I have hashimotos and overlap is known but I get tested for diabetes every time because I’ve risk factors for that… like… why not this? Before I ended up in the hospital with my kidneys blown up like balloons? I mean obviously I’ve issues going on with that but still. More needs known about this I think maybe this should be a more standard test.
thank you. Easy to listen to and understand, i have this and have an upcoming surgery. Finally, I have an answer to my many health issues.
you're welcome!
I had a messed-up surgery in Nov. 2021. Lost an extra (good) Parathyroid beside the Adenoma, and I am pretty sure, that the vagus nerve was severed. I have lost trust and do the supplementation on my own. So far - so ???! The supplementation with calcium, Vit. D3, B 12, C, Folate(MTHFR) works pretty well, even without blood work. The vagus nerve however, causes severe digestion problems. I am still hoping to find some general directions on the internet somewhere. 🤢😵💫😥 I am 84 and will not find medical help in a rural area nearby in my country.
I agree.hyperparathroudism needs to be more publicized.
What do you do if your doctor ignores high blood calcium? In the last two years, my calcium level is in the high range and I’ve have had high a pth reading. My doctor thinks this is normal for me. I’m confused and concerned.
You should go to a different doctor if the one you have won’t listen!
@@SMH_mu That’s what I did. Now playing the waiting game to see if values get worse. High PTH, high blood calcium.
@@jlkdr has anyone ordered an ultrasound of your thyroid/ parathyroid glands?
Hope it gets sorted out soon
@@SMH_mu Not yet. It has been mentioned as a next step.
Your doctor is ignorant 😔
Whats even more complicated is having untreated multiple endocrine neoplasia type 1. Its been the most difficult thing i have ever lived with in my life. I was denied genetic testing but i know i have it. Its traumatizing, the symptoms are debilitating
Best of luck on your health journey.
I have MEN1. Why were you denied genetic testing?
@@scarba because I only have a lung neuroendocrine tumor, I don't have a parathyroid pituitary or pancreatic tumor but some families only have carcinoid tumors every family is different.
@@suzysmith4254100% of MEN1 patients will develop parathyroid tumours in their lifetime, so you should get it a regular ultrasound and full bloodwork, also for adrenal and pancreatic hormonal changes. So far I’ve had my adrenal gland and one parathyroid gland removed and due to have the rest except one half removed. I’ve also had my left adrenal removed and I have multifocal tumours on my pancreas which gets checked twice yearly. My sister has MEN1 too and she has adrenal tumour, parathyroid and thyroid, lung like yourself and pituitary and pancreas. She’s due her first surgery soon for parathyroid adenome. It’s a real pain having a ton of tests done and all the surgeries and hormone replacements but we’re still alive. Be grateful it’s neuroendocrine lung tumour which can be cured by removal. If you only have a neuroendocrine lung tumour then it can be sporadic and not familial and if you don’t have one of the classic ppps, pituitary, pancreas or parathyroid tumours it’s most likely not MEN1. Be glad if it’s not. Then you just have a one off sporadic removable tumour. I wish you luck.
@@suzysmith4254 it’s not every family that’s different but every individual is different within the family and some MEN1 is not familial and inherited but a sporadic mutation. It’s far more likely statistically that you just have an ordinary neuroendocrine tumour and that’s a better thing to have than MEN1. When do you get your tumour removed or is it just watch and wait?
My labs dont show a peoblem which is also very frustrating since i hVe so many symptoms
Thank you so much.
@Dr. Alan Christianson Please help me. I was diagnosed with Acute Lymopcitic Leukemia back in 2003. ( Remissions for almost 16 years now) I never had anxiety, didn't know what it was. Than I had my first panic attack and went to the ER. The ER doctor told me the reason anxiety started in me was from all the Prednisone prescribed during my 18 months cancer treatment. He told me that, my Adrenal Glands were effected and that is what has been causing my anxiety. I have suffered with anxiety and panic attacks for the last 16 years. If you have any advice please let me know. Thank you.
Jerry F Take Ashghandha
Doctors do in New Brunswick
I'm having awful symptoms and have the barely high calcium and high PTH. My primary care doctor sent me to an endocrinologist, who seems intent on saying my problem is Vitamin D!. It was low in the past but now my Vitamin D is normal! Should I have been sent to a surgeon, too, instead of to an endocrinologist? Also, what about maintaining the calcium levels with Vitamin K2? I was also recently diagnosed with diastolic heart failure. I'm also having awful insomnia!
No amount of supplementation can cure an adenoma/tumor. It will only continue to grow and wreck havoc on the body.
Oh wow how are u now
@@carmella88 I had surgery September 27 to remove two parathyroid glands and half my thyroid. The recovery is slow, but I am feeling much better. Thank you for asking!
Any advise i advise her doc to do
There must be another way to deal with this besides surgery.
Agree! Surgery is a quick profitable solution for surgeons. The body has the amazing ability to heal itself
I got my mother's elevated serum calcium levels to normalize by supplementing liquid nano magnesium and potassium powder. Electrolytes imbalance
Honestly, you are going to profit more from surgery than the surgeon. You will get your life back.
I understand your thought process. But try to think of the bigger picture. Getting intravenous calcium blockers for life really sucks! And that is more profitable for them. The surgery is like 15 minutes.
@@michaelh7527 Ihu
@@republiccooper ???
Im tired all the time, my parathyroid is 29 and my blood calcium is 9.2...not sleeping, broken femur 2 years ago was a spontaneous fracture, and have osteoporosis...why am I so tired?
Hi can this also cause Afib ? Thank you
Yes, hypercalcemia can.
Hello Doctor. I am facing the same issue currently and have changed more than 10 doctors. But noone could understand my situation and pain for almost 2 years. Its been two months now i m having hypertension, palpitations, sudden weight loss, infections, elevated RDW and Anemia. But doctors said it can be due to stress or anxiety or IBD 😢 My Hb reached 9.9 with high RDW and no doctor could diagnose the issue. Recently my bones started hurting badly and I had fatigue which hindered my day to day activities. FINALLY, I met an internal medicine doctor who really understood my situation and did PTH test. and its value is 117. Also my calcium is 9.8 and phosphorus 1.2. What should i do next?
I am out of work due to my symptoms being so severe.I have been getting steadily worse for several months and my doctor tested my pts which sometimes really high but also can be normal.k sm a 52 yr old woman that had a partial hysterctomy 19 yrs ago. I was told i had significant bood in my urine .i wasnt seeing any blood.my doctor referred me to an endocrinologist who first put me on a high dose of vit d to find out yhe relationship between that and my calcuum.i nos can feel two large tumors in my chest and my esophagus.
Enjoyed your vid but I have to disagree regarding heredity playing a role. I think hyperparathyroidism is familial, I have it as well as my sister, her daughter and her son. We lived many miles apart most of our adult lives, different environments and diets for sure. Perplexing at times. Thank you and God bless you.
So, do you have FHH? If so, did you get generic texts for it?
Did you ALL have surgery?
Just curious, One Dr. thinks I might have it (FHH)
My sister had it too
My PTH levels are sort of all over the map. Sometimes significantly elevated, sometimes in the middle of the canned reference range. Recently I had problems with huge amounts calcium crystals, blood, and white blood cells getting tossed in the urine. I'm not sure what to make of it.
Im 26 and just found out I have this due to chronic fatigue and depression that led to labs being done
Thank you for watching and best of luck on your health journey!
How are you now ? After surgery
Hi there I was wondering if there is any thing you should avoid before testing for parathyroid? Like any supplements that could affect test results?
Yes. Be off Biotin for a week before blood testing says specialists doctors @austindaniel3852
I have 129 PTH but normal calcium. Do have stage 3 kid disease. Lots of symptoms of Hyperparathyroidism. Deemed secondary. However, I have osteo. Surgery soon.
How are you doing post surgery? I got same problems 😢
@@ranigovender3252 I am worse as we think my vagus nerve was damaged in surgery. However my PTH and calcium are normal with 6 calciym citrates a day
@@tarabalts6069 Sorry to hear about your experience. Do mind if I ask who performed your surgery? Just want to make sure I don't go there.
@@tarabalts6069yes!! Who did your surgery??
@@ginamclane6638 Surgeon at Marshfield clinic in marshfield Wisconsin 95 percent success rate very good
I have no worked for almost a year! High parathyroid normal calcium. No diagnosis or treatment! Depression anxiety hair loss digestion issues. Kidney stones yet still not sent to a specialist!!! Because my calcium is normal😢
please get a second opinion. Don't give up!
Having parathyroidectomy wednesday
Can you clarify the debate on iodine for hashimoto vs not, some say it will trigger more TPO antibodies bc taking it will increase TPO enzymes? Some say its necessary for thyroid not matter what, need lugol. But what if taking lugol 10-22mg makes your thyroid suddenly feel sore?
Glad to help. I explained the debate in great detail here: www.drchristianson.com/blog/the-iodine-controversy/
I missed this why does thyroid disease lend to parathyroid disease?
there is not a clear reason as to why but it is known the risks are higher.
i am a professional singer... is there a risk for damaging my vocal chords with the surgery?
@@kmoon50 vocal cords, no. Recurrent Laryngeal nerve, there is a small risk. It’s best to have a surgeon who focuses on this like those of the Norman parathyroid center.
Thank you for directing me to the video on your Office Hours Nov1, 2021. I have my annual physical on November 23, 2021 I will discuss this with him. I may also for an endocrinologist that specializes in the thyroid. You have given me hope again.
Follow-up I am finally seeing an Endocrine Surgeon this week.
Wonder if diet and lifestyle can help reduce hyperparathyroidism happening. Read that sometimes taking vite D can reduce Ca serum from PTH, but many have high 'active' vite D(1,25OH) . Can eating more calcium foods help reduce high PTH? Also just read on selfdecode, can be related to aldosterone. Also that exercise can effect PTH level... Wonder if acupressure may help, as it gets lymph circulation up. so checking kidney, PTH, vite D, TY for info
Diet and lifestyle can’t cure a tumor. I’ve taken thousands of dollars worth of supplements per month for years and still felt like death. Surgery is the only cure for this if you have it.
They said my mom has it and they are seeing what works she is 81 and doesnt want sugery what can we do ??
Surgery is the only answer.
Look up boron.
@@Ms.AnnThrope TYVM!
Surgery for hyperparathyroidism? That’s the cure? Shouldn’t we aim to save all of our organs and glands?
I’ve done a lot of research about hyperparathyroidism and a skilled surgeon can remove the diseased gland in less than 20 minutes and you would be good as new. You have 4 glands and from what I understand you would have only 1 maybe 2 glands that need to be removed. And you can normally with only 1/2 gland.
You have spare parts. There is no curing a tumor. Get the bad gland removed and let the back-up glands do their job.
Absolutely right! I’m amazed so many people are willing to leave a diseased gland in when they have other parathyroid glands that are healthy and can do the job. @@dianalarkin9483