Hyperparathyroidism- diagnosis, parathyroidectomy, post-op, questions and more!
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- Опубліковано 14 лип 2018
- Sharing my hyperparathyroidism journey and questions that I have received from fellow paratroopers! Hopefully this is helpful to you. If you have any further questions, I’d love to hear from you! Please comment down below or feel free to message me on Instagram. (@christinamacauley_).
Hypercalcemia, parathyroidectomy
I just had my surgery 2 days ago. 12/6/2022. I feel a little pain, uncomfortable to sleep. But i can eat well. First day only soup and lots of liquids. Today i had rice with chicken, scrambled eggs, a little bit small pieces of meet, bread an some soft cookies. I’m feel so hungry.
Ice helps me a lot with pain in the area of the surgery.
I’m feel so good. Thanks god i removed this bad gland from my body. 😊
I had my surgery on 1/11/23. Same here!
I enjoyed reading about your experience with hyperparathyroidism. I had my surgery about 6 weeks ago. For 2 years I had elevated calcium levels. After further testing, it was determined that I had a small kidney stone as well as the other classic markers for the disease. After having read multiple accounts on UA-cam, I thought that my life would change immediately! My symptoms prior to surgery were not terribly dramatic; but in the few months before surgery I, like you, had had problems with indigestion, causing me many sleepless nights and a chronically sore neck as I tried to prop myself in bed. I was starting to lose weight. I also had chronic thirst and excessive urination. I had a few UTIs this summer. It sounds crazy, but for the past few years I wondered why it was hard for me to lift those small watermelons at the supermarket. I have a strength training regimen I follow regularly and I found that I had to use 2lb. weights, rather than the heavier weights I had been using. I felt that when sitting on the couch, I could never find a comfortable position. After I had the surgery, the incision didn't bother me at all. It was my neck which had been sore from propping it. (The back of my neck has just started feeling better! ) I also found the intubation with its resultant throat clearing to be so bothersome. It did not hurt to eat. At 3 weeks I noticed the indigestion starting to calm down. My muscle weakness is going away. I feel strong! I can now comfortably sit without pain. The scar is not that noticeable, but is a bit tender when I rub it. I'm glad I had this surgery done.
Where did you have surgery if you don’t mind me asking
😀
@@jamieokan9780 Upstate University Hospital, Syracuse,NY
Hi Gloria
Thank you so much for sharing your story. I also have chronic neck pain. I wear a neckbrace to bed every night. I also wrap my neck tightly in scarves during the day. To avoid headaches. I have had the problem for over 15 years but just recently diagnosed partly my fault because I had conflicting information from Drs I still haven’t had the surgery. I’m debating on wether I need to go to the Norman Parathyroid clinic or just let my surgeon from home do the surgery? My nodule is hidden it could only be seen on the Sestambimi scan using the radioactive dye.
So I’m concerned that It’s going to be hard for the Surgeon to find. Was yours straight forward?
Diane
@@andresfamily5599 Like you, I tried to read everything I could about hyperparathyroidism. The Norman clinic had so much information and that was helpful. After a complete workup and thorough explanations, I decided to go with my local surgeon who does several of these operations per year. Good luck with your decision. I'm sure you'll feel better.
Thanks for sharing this with us. I had my surgery on August 17, 2020. My Calcium level was 14.7, and my PTH was 526.3. I was shocked.
I was told that it wasn't how high it went, but rather how LONG my levels were above 9.5, since I'm a male over age 60.
I had one tumor, but it was in my chest instead of my neck. I needed a thoracic surgeon to go in and get the tumor out, and I was able to find a great doctor. He did the surgery, and I'm feeling GREAT after a month post op. I'm back to work, and things are great. I didn't want to believe I would need to take calcium after the surgery, even though the doctor prescribed it temporarily. After being so high on calcium for so long, I decided not to take it when I got home. After 3 days, my lips started tingling and my fingers felt like pins and needles were being stuck in them..... I found out the hard way that you really do need the calcium after surgery.
I must admit that my expectations after the surgery were unrealistic. I was told that I would feel better right away, and I wouldn't have issues. To the contrary, I was given calcium before I left the hospital, and I didn't feel well at all. I was in a lot of pain, and only drugs relieved that. The constipation from the opioids was awful. Not pleasant at all. Calcium from Tums or from over-the-counter medication is absolutely essential to keep from running low on calcium.
I hope that everyone else realizes just how important getting the surgery is. The excess calcium in your blood could cause a lot of issues and may even take your life away if left unchecked for a long enough period of time.
Thank you....
Thank you for watching and for sharing your story too! I'm so sorry you had to suffer with this diagnosis too!
Thanks so much. I just received a notification of your reply. It has been 4 months since the surgery, and I'm continuing to do well. I'm off calcium now, and the remaining parathyroids have started to work. I've maintained my weight loss, and I eat a plant-based diet now. I'm socially distancing this year, but 2021 promises to be much better. Please be safe!!!
Thanks. I just had mine done. Hopefully feel better soon.
That is the highest cal and pth I've ever read!! Holy Cow!
My boyfriend just had 3 1/2 parathyroids removed. This has been the hardest journey ever. His calcium was 5.2 today and he has spent weeks at a time in the hospital getting infusions. This is a nightmare
Wow thank you so much for making this video so I do not feel so alone in this difficult journey. i am only 27 (female) this issue has kinda ruined my life and my anxiety, bone density and heart palpitation symptoms are so severe I had to quit my job! i am praying I will get surgery asap, I have to wait weeks just to get scans!
How are you now
Try being that age now im 63 and was so sick then not believed even with pis blood work tey another 30 plys yes of suffering
Thank you for your information. I was finally diagnosed after 12 years of hypercalcemia. I ended up with a adenoma which was measured as a thyroid nodule since 2004. All symptoms you described I had. Lethargic, nausea 24/7, anxiety, insomnia, frequent urination, thirsty ( all glucose tests negative) CABG×4 2015. 15 different kidney stone surgeries with stents etc. Went to endocrine and was told all tsh, t3 t4 etc are normal and no problem come back for recheck. Told doctor to check my PTH intact and ionized calcium and binge, both very high. Did 24 hour UA and as well high. Saw surgeon who said removal asap.
Only 1 nodule needed removal, bone pain gone, lethargic gone etc.
I'm on day 5 post op, have done swelling and soreness but doing well.
Thank goodness I didn't walk away another 12 years of all this pain I had and unwellness 🙌
Oh and my dx was primary hyperparathyroidism
Love to hear a success story!! Thank God! I’m so sorry you suffered with those symptoms, it’s truly awful. I hope you’re continuing to feel well. ❤️
I just got diagnosed. Mine is not severe, but I'm exhausted, brain fog, depression and anxiety, but I've gone through severe trauma lately too (suicide of a son, is just one example), so hard to tell how much comes from high calcium vs. PTSD. On a scales of 1-10, I feel like a 3-4 most of the time, 5-6 at my best. I hope that they can get me back to feeling well again.
Sorry to hear about your condition. I really hope it gets addressed. I had my surgery 9 days ago.. and feel so different.. press for full investigation and surgery. You have a lot to deal with as well as parathyroidism.. take care x
I’m so sorry for the trauma you have faced. My prayers are with you. I’d love to hear how you’re doing after surgery. ❤️
@@christinaneuweiler8541 Thanks. I just had my imaging (sestamibi and ultrasound). No odd parathroids found. They did find a small tumor in my thyroid tho :( Waiting for the surgeon to advise next steps. Maybe a CT. Journeying onward...
me atm
I’m at 139 w/ 11.4 calcium
I am a 60 year old female and I had surgery 14 days ago. I struggle to swallow, feels like a lump in my throat. I also have terrible fatigue, headache and heart palpitations, very low energy and it makes me depressed. Anyone that experienced these symptoms? I definitely have a lot less body and muscle pain. I am so looking forward to have a normal life again.
Hi there! How have you been feeling since this comment? I hope you are doing better. I know swallowing was a bit tricky for me at first too, likely due to the swelling. My energy was very low for awhile, which I attributed to being extremely out of shape. It got better with time for me. ❤️
I’m sorry that you went through this post op. This is exactly how I feel right now Pre Op.
I’m a 61 year old female and will be having surgery in a couple weeks.
I am Really nervous about it. I’m one of “those people” who tries natural cures first. It did work for several years but now the tumor is working overtime.
I hope you are doing great now.
If you get this message, please let me know how you’re doing. I would greatly appreciate it.
Thank you. ❤️
@@jthor3097 hi there, I'm so sorry to hear about your problem I have loads of sympathy because I know what you are going through it is traumatic. I had the surgery and the tumor was removed. I had major stress before the surgery and it caused severe anxiety. I am totally healed but it took time. I had low energy for a long time and I struggled to swallow. I did not get any medication from my Doctor so I took natural meds to cope with anxiety and it took about a year for me to feel my old self. I take Vit D, Vit k2, magnesium, because my parathyroid problem started because I had hypercalcemia. This is what I went through not that you will go through the same. I was not well prepared for the prosedure.
Please let your surgeon explain the prosedure etc before the operation to you to give you peace of mind. I really trust that you will feel better asap. The surgery is tuff but worth it. I pray for you. Regards.
@@jthor3097How are doing now? I too am one of those people that try natural remedies 1st...I'm not yet diagnosed with hyperparathyroidism but my doc did mention i had high vit D levels and high calcium - not sure if the high calcium is strictly from the vit D or if I have the dreaded hyperparathyroidism...I'm curious how you got along post-op?
Wish I had seen this before my surgery. I had all four that were removed with a new one created and implanted in my forearm. So getting numbers on target is my challenge. I’m going in three times a week to get bloodwork. Will be so thankful when I get to reap the benefits of no bone pain, body aches etc. Thank you!😊
I feel so bad that you went through all of that. My Hypercalcemia (currently 12.3) was glossed over by multiple doctors as they focused on my cardiac issues (SVT) and my low phosphorous. I presented with a heart rate of 190, a calcium of 11.9 and a Phos of 1.2. They slammed me full of fluids and told me I was just "anxious." I referred myself to a cardiologist and EP specialist. As an ICU Nurse and Nurse Practitioner Student, I had a bit more insight and called my primary (who is amazing) immediately to get PTH levels. I found your "survival bag" to be very useful! Planning surgery now! Your incision looks amazing :)
How are you doing did you have surgery
Brittany! My heart breaks that you went though that. A really high heart rate was something I struggled with too, our poor bodies were screaming for help. It is just the worst feeling to be told it’s “just anxiety” when you feel so awful. I hope you are doing well now!! ❤️
i loved this video; so informative to know what you are going/went through! you are so strong, love you xx
Thank you so much for watching and for your kindness!! Love you too sweet girl! :)
Hi Christina, thank goodness I found your video, it was very helpful and informative. My calcium levels were very high at 20 and have just had surgery to remove the parathyroid. Your video was exactly what I needed and you explained everything so well and glad that you feel better now after all the mis-diagnosis. THANK YOU so much for the lovely video, I can really relate to it. I am currently recovering after surgery. Love and best wishes from London. 🙏❤🙏
Thank you so much for your comment!! I’m really grateful to hear it was helpful for you. Happy healing!! ❤️❤️
Thank you for doing this video- having this information was incredibly helpful for me, through diagnosis and post-op.
I'm so glad! Thank you for watching!
I've been diagnosed with this & I'm in the middle of being scheduled for surgery. I have many of the classic symptoms: fatigue, muscle pain, acid reflux, anxiety/depression, sleep disturbances, thirst, brain fog/forgetfulness, irritability.The thing that brought me in to see the dr was sky high blood pressure.
I've been feeling poorly for about 3 yrs but thought it was aging (I'm 53), menopause & getting bad sleep. Didn't realize until the hypertension was discovered that I had an actual serious condition. But thinking about it, I'm pretty sure I've had this thing for at least 10 yrs. From what I've read this is common... Thanks for the video!
Did you happen to GAIN WEIGHT during those 3 years?
@@camillebambi6449 Sorry just saw your post. I've only gained about 10-12 lbs. But I could never lose much weight even when I exercised regularly. But I have terrible cravings now & eat a lot of bad carbs. Now I no longer have the energy to exercise. Bad fatigue all the time, like I have the flu.
Laura Reyna I’m sorry you’re been battling feeling poor for 3 years- that’s a long time to feel unwell! I hope the surgery gets you back to feeling amazing soon 💕
Thank you for your video...it was quite informative. I was just diagnosed when my doctor ordered some blood tests. Your video helped to understand what I'm looking at going through in the coming weeks. I appreciate your comments on the ups and downs that you went through, and your suggestions for things to have on hand. I hope you are blessed with good health the remainder of the the long life you have ahead of you.
Rick Crow thank you for your message, Rick! I’m so glad you found it helpful. I hope you have a smooth surgery and a quick recovery!
Thank you very much. Just diagnosed and you've answered so many questions. Wishing you and all sufferers well, plus fast & long lasting recoveries.
I’m so glad you found it to be helpful!! ☺️
Christina- thank you for posting this video & hats off to you for having the courage to do so. I started having issues about 10 years ago but at that time the doctors (yes doctors, a few of them) all said my reading of 11 at that time was no big deal ( i was 32 at the time). After many doctors & tests later i gave up & just decided that i must live with my symptoms, not until the other day my mom (also doctor) decided to have another look at my old tests & decided to have me re-test. So we are awaiting those results. I guess i am going thru these videos to see how other experiences were. Thank you, you put my mind to ease a bit :)
Hey there! So sorry I missed your comment until now. How did your results come back? So crazy to hear that they turned you away with a CA level of 11! I hope your symptoms aren't too disruptive, but I know how much they can impact your life. Wishing you all the best, thank you for your kind words. So glad this video was able to put you at ease a bit! Let me know if I can help in any other way.
I believe that a lot of doctors don’t understand the Calcium levels and PTH levels quite well. It’s not how high far from normal as to how long and how is your body reacting to high levels.
Thank you for this video. I woke up the morning of October 16th with severe neck pain and couldn’t move my head. I waited a week to go to the ER because I thought it was just a kink in my neck that would go away. It was only getting worse and the pain kept moving around and I was getting very nauseated, so I finally went in. They did bloodwork and took a urine sample and also did an X-ray. They told me my labs were excellent, but I had some degeneration of my discs at C3 and C4. My actual diagnosis was wry neck, they showed me some exercises to do, gave me a muscle relaxer and sent me on my way. I was not feeling any better and the nausea was getting worse and the fatigue I was experiencing was worse than ever. I’ve dealt with severe fatigue for quite a few years. I lost my mom in 2020 from colon cancer and the doctors may have caught it sooner if they would’ve just paid attention to her labs, so I decided to take a look at mine just to make sure they were “excellent” like they told me. First I noticed my urine had trace amounts of bacteria and crystalline substance. They never mentioned that. Everything else was all in normal range and I almost didn’t even look at the last page, but something told me to keep looking it over and I got to my calcium. 10.3mg/dl. Normal range was listed at 10.2, but I knew that was even too high being that I am a 40 year old woman. I called my primary care doctor the next morning and made an appointment. He told me it was only a slight elevation, but he’d go ahead and do bloodwork. After waiting a week to hear back, I finally called them. The receptionist pulled up my chart and told me that I had a “slight” elevation in my parathyroid hormone and that’s probably what caused my calcium to be high. Then she asked if there was anything else she could help me with. I was like, you could start with what does that mean and what do I do now. She said they were waiting on approval for an MRI to look at my discs and when I went back in to see my doctor about the results of that, I could ask him at that time. So, I hung up and went to google. Of course, that only made my anxiety worse. I called back up to the office a couple days later and asked what the actual number was for my PTH….. 173.6. That’s what the receptionist considered a slight elevation. The girl I spoke with this time told me the doctor had sent in for approval on a sestamibi scan which I’m still waiting on. The more and more I’ve read about hyperparathyroidism the more angry I have become. One reason is because I’m having to find all of this information myself because I can’t get my doctor to tell me anything and also because I’ve probably had this problem for a few years. Looking back at all my health issues, this is probably the cause for all of it. SVT, pancreatitis, FATIGUE, never feeling well, I had 29 cavities in just a year and a half time after only having one cavity my whole life, my worsening depression and anxiety, my brain fog which had me thinking I must be having symptoms of early onset dementia lol, my aches and pains that were far too awful to be just from turning 40 years old. The pain felt like it was deep inside my bones. My joints always hurt. My mom had always told me that when you turn 40 everything starts falling apart, but this was all ridiculous. It had me wondering why people even want to live past 40 because I haven’t enjoyed life at all since I was 30.
Well, at least I have found out my own problem, so now if I can just find a doctor that will help me. That’s not easy because healthcare is HORRIBLE where I’m at. I’ve been so frustrated and I’m honestly giving up at this point. I hurt and feel so bad that I just don’t have much fight in me. I feel like no one is on my team and most of my friends and family just think I’m a hypochondriac at this point because of all the complaining I’ve done throughout the years. At least I know I’m not crazy now. I did just find out my state has a specialist who is one of the top endocrinologist in the US and he’s only two hours from me, so I’m praying with all that I have that they will call me back and accept me as a patient and that my insurance will approve it. One of my biggest fears is vocal chord damage because I’m a singer, so I want someone who knows what they’re doing. Did you have any nerve damage to your vocal chords? It doesn’t sound like it, but do you get hoarse easily or anything like that? Also, did you have the minimally invasive procedure or the regular one? All I know is I just want to feel good again. I don’t remember what that is even like. Oh! And did you have excessive sweating ever? That’s my latest symptom I’m having. Sorry im rambling. Lol I’ve just been so on edge since I noticed my calcium was high the night before thanksgiving and it only got worse when I heard my PTH level and can’t even get my doctor to talk to me.
Im so sorry that you had to go through all of this, especially being so young, but you are so brave and strong and I appreciate you bringing awareness to this issue. I never even knew we had parathyroid glands let alone 4 of them! Lol Im happy you are feeling better and living a more quality life! ❤️
I relate to so much of what you’ve written here! I hope you’ve been able to make some progress with finding a dr who will take your case. My surgery is in 3 days and I’m praying for relief of my symptoms that my family dr has blown off for years. Depression, anxiety, kidney stones, bone pain, joint pain, brain fog, early onset dementia symptoms (this has been the scariest part of this for me) and more.
@@trishak673 I hope your surgery was successful and you are feeling great! I was finally referred to a surgeon. I just sent off my DNA test to check for MEN1 and after that comes back then they will schedule my surgery. I am still getting worse by the day, so I am Soooo ready. 🖤
@@jLyn1122 I’m a just over a week post-op. I definitely feel better. I am hoping for more improvement with my joint paint still but it’s not as bad as it was. The bone pain hasn’t returned (the things you notice as soon as you’re off the meds they give you! LOL). This morning I found my list of what I noticed bothered me the most - I wrote it before my last pre-op appt. The BIG things that are GONE: brain fog, anxiety, depression, bone pain, “losing my words” (someone described this as their words being stuck and not being able to say the thought). I can deal with the joint pain that isn’t near what it was, especially if all these other symptoms have disappeared! I truly hope this gives you some hope. I know I was looking for even a small bit of it when I knew my surgery date was approaching. 💕
Hi!! My goodness, you have been through so much. My heart aches for you! How are you feeling now? I hope you have been able to get your procedure and feel major improvements. ❤️
I thankfully didn’t have any vocal chord damage but I was very hoarse for a few days, likely due to the irritation of being intubated. My surgery was minimally invasive and my scar is virtually invisible now! I didn’t have excessive sweating, but I also have small fiber neuropathy and my body doesn’t like doing typical autonomic functions normally 😂
Thank you so much for your kind words. It was a really hard season of life, and I’ve struggled with health on and off a LOT in my youth.
Wishing you well! ❤️❤️
Wow I can relate to your story too! My goodness why don’t Drs know about this problem? Have you had surgery yet? I’m still waiting wondering if I need to go to the Norman Parathyroid clinic or just go to my surgeon at home , where I don’t have to pay the 20,000$ Canadian? Apparently my nodule is hidden. Because only the Sestamibi scan found it .
Thank you so much for sharing this.. be a wealth of information for fellow sufferers. I have just had surgery for one damaged gland and feel the true benefits already. Mine was diagnosed after fracturing my pelvis.. it took nearly 4 years to get to the surgery stage.. so many blood tests, urine tests, kidney scans, ultra sound and sebi scan.... it was all well worth it.. x
Thank you for your advice in sharing your experience.
Thank you so much for such an honest and informative description of your experience, your such a sweetheart 💕 God bless you. You’ve put me at ease as I’m a 60 year old male facing surgery this week Thank you so much, I wish you a long healthy and happy 😃 life. All the best . J
Jack O Sullivan Thank you so much for the kind words, Jack! I’m very thankful that you found this video and it put you at ease. I hope you are feeling well post-op!
I was undiagnosed for many years...to the point where my gastro doctor that I was not not help-able. I had high numbers as well at 11.4. And PTH ranged 140-160. I’m a week post op and it was really dramatic. I’m feeling a lot better but strange sometimes. I hope to make a full recovery
Rosa Morales hi Rosa, how are you feeling? I understand- my gastro found “nothing wrong” and consistently told me I was “stressed and anxious.” It’s the most debilitating feeling to think its all in your head and you’re crazy. You are not! Our levels were almost exactly the same. I hope you are healing well!!
Christina MacAuley yeah got sent away with the anxiety diagnosis. Turns out my tumor was growing for years bc my doc said normally they find them when there 20 cm but mines was 2173 cm and told me 1/100 chance of the issue returning in my lifetime. I’m on calcium with vit d3 so my bones rebuild itself and don’t develop hungry bone syndrome they call it. I originally got sick around 2008-09 and that’s my digestive system was doing so bad and kept up that way till I got on probiotics which helped a bit. I had Irregular heart issues for years and treated it like it was anxiety and was never referred to a cardiologist. Now I am being sent for one and a bit worried bc I’ve had this disease for so long I was told. The surgeon told me he thinks the calcium tests weren’t accurate and that they are much higher than that but bc I kept hydrated to keep my levels down from when I was told when I was diagnosed a year ago. I still have some issues but not as bad. I feel myself getting better and the energy is there definitely. I can’t wait to see myself a year down the line
@@Roguey84 hello,How are you Doing now?
Hi Christina, thank you so much for sharing your para journey. I had my op three days ago on Mon- was up and about soon after did two hours work yesterday- childcare, walked the baby in his buggy by the beach! Coping ok with post surgery sleep, restlessness and appetite loss issues. Keeping positive and sending love from UK 🥰
Hi Tanja! Wow, sounds like you've made an incredible comeback. So glad to hear you are doing well and keeping positive :) Thanks so much for sharing your journey with me, too! Wishing you all the best!
I’ve been diagnosed with this from randomly waking up one day and feeling weird about a year ago. I have insane anxiety with it and feeling achy all the time, sometimes sick too. I’m in for my pre- op on the 1st august so hopefully feel better after surgery. This has complicated changed my life around!
It is such a challenging disease, that’s for sure!! How are you feeling now? I hope you’re doing well! 🙂
Smh me too!!! I had to quit my job!! I am so depressed!!!
Omg thank you!! So helpful this video! I was diagnosed and I have a nodule and a high calcium! I came here because I was really scared about the surgery!!
Thank you for sharing your journey!!!
Hi Julia! I’m so glad you found this helpful. ❤️ I hope you aren’t too afraid and that you are on the road to recovery soon!
This was helpful, thank you. I was recently diagnosed with hyperparathyroidism and we in the works of the next step. You hear the word tumor and it freaks you out a bit but knowing there's others that have been through this... it makes things easier to understand.
CedeMarie you are most welcome! I completely understand how scary it is to hear those words. Rest assured that a full recovery can occur! Wishing you great health. Let me know if I can be of further assistance!
So how did you finally get to the right doctor?
Was it from bloodwork that you finally was sent to endocrinologist?
I have been told that calcium levels can fluctuate as well so it could be bloodwork?? May not always show at different times?
Just had this done yesterday. 1 gland out. Getting home today. Thank you for posting this video. Really helpful.
murphyebass I’m so happy to hear that you found this helpful! I hope you are feeling well post-op 🙂
Christina MacAuley feeling absolutely great nearly three weeks on. I seriously can not believe the difference in energy. I feel so sorry for people who Are finding this hard to get diagnosed. Took me a while here with scans etc not be 100% conclusive but when the surgeon went in there was a tumor on the gland so out it came thank god. It’s a very debilitating illness that gets so little attention. I’m a 37 year old male who had incredibly low phosphate. I ended up in hospital on a drip multiple times in the past number of years because of it. I’m so grateful to my endocrinologist for figuring it out. My wife and kids finally have their husband and father back.
murphyebass truly an incredible story!! What a huge blessing that you are feeling better. So happy to hear you are on the mend!
So happy you had found out while you were young ...I have a great deal of problems because it was not found early. God bless you and thank you for sharing this heartfelt video so others might get the help they are looking for. ❤
Thank you for your kindness, may God bless you as you continue to battle health problems. I’m so sorry it wasn’t caught early. I understand that and relate with my other health issues ❤️❤️
Kudos to your doctor, for picking up on it.
MsMotoconcho I was beyond thankful to Jesus for the one doctor that listened.
I was just recently officially diagnosed, but looking back at my labs, I had a calcium of 10.4 on Sept. 5, 2021 (high normal is 10.3) when I went to the ER for what turned out to be a massive ovarian cyst. They also found renal cysts and a kidney stone on MRI (passed the stone in December. OUCH!). The calcium was flagged as high on the report, but no one raised it as an issue at the time. I was experiencing increased irritability and anxiety and attributed it to the sudden drop in estrogen from having my ovaries removed. At my June 2022 physical my calcium was up to 10.9; on repeat two weeks later it was 11.1 and I was referred to an endocrinologist. A 24-hour urine collection also showed elevated calcium of 276 (normal being less than 200). I just had blood work yesterday for calcium, vitamin D, and PTH after 6 weeks of 50,000 IU of vitamin D weekly. I'm interested to see if and how much the calcium's jumped in the past two months. The DEXA scan showed osteoporosis in my right thigh and lumbar spine.
I'm scheduled to see an endocrine surgeon on Sept. 27. There was a typo on the authorization letter and they thought they couldn't schedule my pre-consult imaging until AFTER I saw her on the 27th. It should have said September 07, not 27, so we lost a week. Oh well. I just now got those scheduled for next week.
A symptom that's really bothered me but that no one else seems concerned about is a slight feeling of fullness in my throat. When they feel it and have me swallow, they say they don't feel any enlargement. It doesn't bother me as far as eating or drinking, but it's uncomfortable especially when I'm laying on my back. It feels like my airway is slightly constricted or full of phlegm. I've been spared bone pain and digestive problems so far. The worst, besides the psychiatric issues, has to be the near-constant fatigue. I can sleep well but still be exhausted. I'm almost always fighting the urge to take a nap. I'm really looking forward to having the offending gland/s removed. I can't imagine living with this for years, let alone decades.
Hi Shirley! Would love to hear how you’re doing post-op.
I wonder if the globus sensation could be caused by a swollen/enlarged parathyroid gland..? I don’t have any literature on that, but just an initial thought that I have. If it’s not impairing your eating/swallowing (thank God!) it could be something non - structural. For example, I get that throat tightness/swelling sensation when I’m having a mast cell reaction. Zyrtec helps! Could be worth a shot to see if you get relief!
@@christinaneuweiler8541 I'm only two weeks out from surgery (Friday, October 28) so I still have postop swelling/scar tissue causing some minor tightness. The fullness was on the left, but the enlarged glands were on the right. I was wondering if it had something to do with being intubated for last years surgery, since that's when I recall it starting to be problematic. It didn't worsen with this latest intubation, so that's a plus. It felt a little like when you take a pill without enough liquid and it gets stuck, but that feeling's gone. I'll have to give antihistamines a try. I *do* have chronic postnasal congestion where I'm always needing to clear my throat, so it wouldn't be a bad idea either way. I was prescribed Nasacort spray last year, but it's not helpful.
The surgeon said I actually had a supernumerary gland, having at least five rather than four. They were ectopic and embedded in my thyroid, so I ended up losing the entire right lobe, isthmus, and a lymph node that was "hanging by a thread." I'll need to have my thyroid hormone levels monitored and maybe start replacement therapy, but so far I'm feeling pretty good. The heart palpitations/feeling of dread and exhaustion have disappeared. I did start having achiness in my thigh and knee after my original comment but that comes and goes, and I expect it to keep improving as the bones recalcify. My normal voice wasn't really affected, but singing or calling out loudly is problematic, and it starts to get weak and breathy the longer I talk. I'm hoping that improves with time, too. I hadn't tried doing either of those things prior to my 1-week postop visit, so when I was asked if my voice had changed, I said no. I'm wondering if their instructions would have changed if I'd said yes. For instance, do I need some kind of speech therapy to help it along? But, all in all? I don't regret the surgery one bit.
Great video to watch to learn about surgery and great tips to make recovery easier. Thank You.
Ed Dawson thank you for the feedback! ☺️
Wow you were so young to have that. I’m 54 and am scheduled for surgery next month. I literally had to research this all on my own. My doctors flagged the high calcium (10.3-10.8 over course of 2 years) the endo I see for Hashimoto’s isn’t that familiar with PHPTism so she said to just monitor it..I didn’t feel comfortable with that so began more research and found the Norman Parathyroid Center in Tampa FL. I highly recommend to anyone suffering from this to check them out, people fly from all over the world to them because they’re surgery methods are so less invasive and the surgeons are top experts in their field and in my opinion is worth the trip and it’s 💯 covered by my health insurance. They accept most major insurance and are preferred providers with BCBS which is what I have. Good luck to all and thank you so much for sharing your journey it’s so appreciated! Stay well.
Thank you. This is so helpful! 🙏☺️
I met with my surgeon today. My surgery is in 3wks so thank you for posting this! It helped.
How are you feeling now 😀
I’m so glad it helped you! I hope you are feeling well these days! ❤️
Thank you so much for sharing! I am also 25 and my surgery is Monday! Our numbers are the same!! I was pretty nervous about all of this, but hearing your story helped calm me down and know what to expect. Thank you thank you!!
I'm so happy it helped you, Nia! I hope you are doing well and feeling healthier each day! :)
Hey 🖐I remember watching your video last year a couple days before getting my surgery I suffered from bone problems and the other symptoms you told and tried treatments that didnt help and after having many misdiagnosis it was confirmed that I had hyperparathyroidism and watching your video really helped ,me relax and know what to expect so thank you so much for sharing your experience 🙏
Thank you so much for your comment, Nina! 🙂 I was so hopeful that others in this situation would be comforted by the information I shared. I’m really, really grateful to hear it was helpful for you. Happy healing, and thanks for coming back to share that it helped 🙂
@@christinaneuweiler8541 Also a lot of people think that hyperparathyroidism affects only elderly people including me even some doctors were shocked that I had it at a young age I just turned 18 when I was diagnosed and considering the size of the tumor I had it for at least two years so I think it's important that anyone who has symptoms goes to get it checked out and you are a great example that you can have it even if you're young and fortunately there is a treatment for it I know that surgery might be scary at first but after a few weeks only everything will be normal again
Thank you for your video, Christina! I'm about to have my parathyroidectomy today and your video helped me a lot ❤️
Hi Darya! I’m so grateful the video was helpful for you. How was your surgery and how are you feeling? Praying for quick healing! ❤️
@@christinaneuweiler8541 Happy New Year! The surgery was quick. Once I recovered, I had all my original energy back and that was great. Now just waiting for the scar to fade a bit more :)
Thank you Christina for posting this, lots of useful tips. My experience may be unusual and worth sharing. I was 69 and some aches and pains were expected. I finally went to the doctor with intermittent low temperature, like 35.4°C (95.7°F) and feeling chilled (but not relaxed!) Some fatigue. Doctor arranged blood test and with high PTH and Ca+ referred me to an endocrinologist. I now feel fortunate in that it was taken seriously immediately. Endocrinologist arranged scans but no apparent adenoma (though Osteoporosis) and now been referred for surgery on England's NHS. Talking to my Endo again on Tuesday, but expecting a long delay for surgery because of back log due to Covid-19 being added to the normal back log. I feel fortunate in that I have the option to pay for this to be done privately either in the UK or abroad. Really want to avoid worse brain fog and hip fractures.
Wow thank you so much for sharing your story! It’s important to remember that while diseases have “typical” symptoms, they do not all present the same way. I hope you are feeling much better these days!
I had hyperparathyroidism and this video was useful for my surgery! Thank you for the post!
Thank you so much for your comment! I’m really grateful to hear it was helpful for you. That’s the goal! 🙂 Happy healing and good health to you❤️
Thank you for sharing your experience. Very helpful tips. You answered a lot of my questions. I went in to surgery looking to take out 1 parathyroid end up taking out 3 parathyroid. So thank you for all of this wonderful advice ❤
Mary, thank you so much for your comment! I’m really grateful to hear it was helpful for you. I hope you are feeling well ❤️ wishing you great health and happiness!
Thanks for sharing, very sweet...
Thank you so much for all of these information. I watched this video randomly. You basically answered all of question for post-OP. My surgery is scheduled for tomorrow morning and I was wondering what will be my situation after that.
I’m so happy it was helpful! How are you feeling now??
Thank you so much Christina for sharing your story… I am 65 years old, and been living in pain for the last six years… spent all of our savings on unnecessary surgeries… and my pain only got worse with each operation. I am having my parathyroid surgery in a few days and I’m so excited to hopefully feel better again. Again, thank you so much for sharing your story. Steve.
Hi Steve! Thank you for watching my story! I’m so sorry to hear you have been suffering for six years. How are you feeling post-op? 🙂
Thank you for sharing your story. I've just been diagnosed with this. I'm in the middle of all the testing. Hoping to get past it all soon. You've made me feel better about the process.
Thank you so much for your comment! I’m really grateful to hear it was helpful for you. I hope things are going well as you navigate the testing and procedure. Keep me posted on how you’re feeling. ❤️
If you don't mind my asking, did you get any neuropathic symptoms from the feet or calves, nerves as well as muscle, in the beginning of your hyperparathyroid symptoms starting?
@@alaskatoburningmen4549 I did not!
@@christinaneuweiler8541 Thank you.
Thank you for sharing! I was recently diagnosed and am in grad school to be an SLP so of course I was curious and did lots of searching through articles about it but I’m glad to hear a first-hand account!
Oh man! Getting this diagnoses while in SLP grad school is so much extra stress- that’s exactly what happened to me! I too love to read medical journals articles about everything. Wishing you all the best and healing in your future! 🙂
@@christinaneuweiler8541 Thank you! Even though my PTH is still elevated and abnormal, my nuclear medicine scan came back clear so my doctor said it wasn’t actually hyperparathyroidislm, then she tested for cushings which was negative, so they don’t know what’s going on but it definitely is scary and stressful at this time in life. Thank you for your well-wishes! I hope all is well with you!
@@jackmaiers7729 I’m so sorry to hear that you’re still having some difficulties :( did you have your calcium checked as well? I don’t know if you have heard of this, but sometimes people have a rogue parathyroid gland in their chest or even their arm! May be something to look into (in all your spare time lol). Best wishes to you! 💕
@@christinaneuweiler8541 I have heard of periodic parathyroid adenomas. My calcium was 9.3 which is borderline. The doctor was an internal medicine doctor and she didn’t seem concerned about the other potential types of hyperparathyroidism and just said she would recheck my PTH in 4 months. I’m not sure why it was dismissed since I have the elevated PTH but I might ask her about it again because I was never taking anything containing biotin (which can increase PTH). I wonder if she responded this way because she works in internal medicine instead of endocrinology. Thank you! 💕
@@jackmaiers7729 I’m glad she is being thorough and rechecking it just to be certain! Would love to hear how you’re doing down the road. I hope you feel well and enjoy your time in grad school!! 🙂
It’s super reassuring to hear from a fellow young person dealing with this. Thanks for the video. I have surgery scheduled soon
We are few and far between! I thankfully have had no long term parathyroid issues. Surgery solved all of that for me. Prayers yours is the same way. Let me know how you’re doing after surgery if you’d like! :)
Mine turned out to not be parathyroid after all. They discovered mid surgery that I had something called a fourth branchial cleft cyst. What a journey!
Just got back home post op surgery and this was lovely! Thank you for taking time to share. Xx
congrats! wish u health n recovery!
may I know was it a minimaly invasive?
Thank you so much! I’m not sure yet although it doesn’t seem too large an incision. The stitches come out next Thursday. Xx
Sharman Jeffries I’m so glad you found it helpful, thank you for your sweet comments! I hope you’re feeling well! ❤️
Christina MacAuley I am feeling amazing! Can’t believe how sick I was with the pHPT... the scar is still a bit sore and swollen having had the stitches out but its relatively early days. Xx
Sana Khan My scar is about two inches across. A bit swollen from stitches coming out but I think should heal just fine. I’m using a Bio Oil on the scar as recommended. Best wishes to you. X
Thanks for sharing and advocating about this illness that is too often unknown. Just had my surgery and now day 3 of recovery. Only wish I had this surgery much much sooner as I first learned I had high calcium 10 plus years ago.
Thank you so much for your comment Neville!! I hope you have healed up and that you’re feeling amazing now that you’re on the other side. 🙂
Hi Christina, thank you very much for sharing your story. I am 64 and just thought my age was to blame for my symptoms. Now I am looking forward to the surgery and hoping to feel better soon. Tony in Texas
Hey there Tony! Thanks for your comment :) wishing you quick healing and relief soon!
Ty this video was really helpful. My wife is having this procedure done . I'm am trying to found out more about what to do before and after her surgery. Your video was very helpful.
Tony Case thank you so much for the feedback! I hope your wife heals quickly! If you have any more questions, please feel free to reach out.
Very helpful and informative. Thank you.
You are most welcome. Thank you for watching and for your kind words!
I am having my op tomorrow 😬 in Istanbul Florence Nightingale. I had no symptoms. Just a routine blood work a week ago showed high php and calcium. So after a bunch of labs and imaging later here I am. Kind of nervous, but also feeling lucky that it was caught. This was useful, thank you. Best.
Thanks for the video! I will be having the same surgery soon. It took time and self advocacy for me as well, but once I had a giant kidney stone that required surgery, my diagnosis was confirmed (with bloodwork and a PTH test).
Hi Rebecca, thanks for commenting! So glad you were able to advocate for yourself to get a diagnosis, but so sorry you had the pain of a giant kidney stone! Wishing you all the best, keep me posted on your healing journey. :)
Thank you for sharing your journey. Great aftercare suggestions! I have surgery next week.
Wishing you all the best with your surgery!! 🩵
Thanks for the video. I was diagnosed in 2012, but the doctor recommended either exploratory surgery or wait and see. I was asymptomatic and my scans were negative. I'm now looking to go to Tampa to the Norman Parathyroid Center. They have a lot of good info on their web site.
Thank you for sharing your experience. God bless you!
Thanks for your comment Brian! You’re right, they have some really awesome info on their site and they are a big help in me self-advocating to get a diagnosis. I wish you health & happiness!
Thank you. My mother seems to have high PTH so curious to learn more about this
westfield90 happy to answer any questions you or your mother have! ☺️
Thanks for posting this video about your experience with your surgery. I am having the surgery next week, and I have been concerned about post opt. I am 69 years old.
Mary Pepp best wishes to you Mary! Keep me posted on how you're doing. It'll be just fine. 😊
Hi Christina, thank you so much for your very sweet, informative video, its also reassuring. Have shared your video with my family and friends. I'm having surgery in 4 days time in the UK 🇬🇧 and I have to say our NHS is quite brilliant, as soon as blood tests showed raised calcium, albeit not very high levels I was wished off to Endocrinologist and within 4 weeks scheduled for surgery with top parathyroid surgeon all at NO financial cost to me.
Sending you much love in appreciation of your splendid video. 😘🌿🥀🙏
How was your recovery after the surgery?
@@Adam-yd8dw I can only say immediately brilliant.
Thank you very much for sharing this. It is very helpful.
I’m so glad to hear that! Thank you for your comment ☺️
So, i went in almost 2 weeks ago for at least 1 parathyroid removed. 2 ENT surgeons (mine and one she trained) looked for hours for what appeared on the scans as a parathyroid. My ENT realized that my thyroid was "hard as a rock and very yucky looking."
She had to call my dad for consent to remove ½ my thyroid. For YEARS i have said it felt like i had a rock in my throat causing me to clear my throat and choking on things...even some fluids.
They could not find the parathyroid. While she removed the left side of the thyroid she investigated the right side and said that side needs to come out too. She is going to reorder the sesmi scan with a broader view to try and locate the parathyroid.
She was surprised i was not more uncomfortable with recovery. I had no help, no friends and no local family. I stayed overnight at the hospital and discharged home.... i drove myself.
I then realized my intrusive suicidal thoughts had decreased dramatically, and the rock feeling was gone. I was not as thirsty as i had been forever. I was able to eat without needing a drink every bite to wash it down.
I follow up on Monday.
She said i was out for 4 hours.
I am going through the blood work and having tests done. So far I have 1 hyperparathroid and a nodule on my thyroid. 2 tests coming up in a few days and the decision will be made at that point on how to proceed. This vid was very helpful.
I know it's been years, but thank you for this information.
I'm so grateful you found it helpful!
Thank you again. Sending love and light to you ❤❤❤🍃🌹
Thank you! ❤️❤️
very glad to hear that you got the proper diagnosis should have been sooner just with bloodwork
I am grateful it was eventually discovered! Amazing what a standard CBC would’ve been able to do for me though. Certainly would’ve brought me relief much earlier.
Hi my name is Linda and I just found out less than a week ago that I have the same thing I have to get a bone density test along with more blood work. But I have something much more and emergency going on also I have thee aortic aneurysms and I have to get surgery on them . I just want you to know that you video is very helpful to me because I never heard of this before and I felt like I needed to hear from someone who has gone through this so I can get a better picture and understanding about also what to expect and need post op . So thank you so much for sharing your story . I hope you keep getting and feeling better god bless you have a wonderful day.
Hi Linda, God bless! I’m so sorry you have several things going on there. I’ll be praying for your complete and total healing. Please keep me posted if you would like, I’m really glad this helped you. ❤️
I was so glad to hear that you also had issues with not being able to eat much of anything. I get stomach pain and diarrhea when I eat certain food I also would get headaches from eating certain foods. I can hardly eat anything. I’m going to see the surgeon tomorrow and I’m thankful I listened to your story because I didn’t know if these food allergies and nausea were part of my problem. The last time I talked to the surgeon he said they probably wernt. I’m going to ask him if he’s done this surgery very often. I’m in Canada and wish I could go to one of your many hospitals that seem to have so many experienced Drs
I pray this Dr knows what he’s doing. My endocrinologist is very good but he’s not doing my surgery. My endocrinologist found my problem and pursued me I didn’t cooperate with him very well at the beginning as he ordered test after test . I ignored some of his requests I had never heard of a parathyroid disorder or gland . Even though mine was found 10 -11 years prior none of the Drs I saw knew about this either I even had mine biopsied looking for cancer it wasn’t cancer so that was the end of it! My calcium was elevated but ignored. I thought it meant I had cancer somewhere in my body. But the Dr who found it just ignored it. It wasn’t until a new Dr referred me to my endocrinologist Dr Phillipps and he dug for 3 -4 years before I would cooperate get the osteoporosis test done and other blood tests done. I was shocked to find out how bad my osteoporosis was. Then Dr Phillipps started explaining a few things to me. I looked it up online but often I accidentally looked up hypo parathyroid and got the wrong information. I looked and looked often getting distracted and would forget what I was doing. Finally I his week after the special Thyroid CT the surgeon ordered I found out I do definitely have an overactive parathyroid gland . Covid slowed things down for me firing nurses in October I didn’t want to go into or near an understaffed hospital. So I canceled my first CT . This has been a very slow process I was afraid of the surgery until I listened to all the testimonies on UA-cam but y’all are probably Americans. I don’t have faith in Canadian Drs but Dr Phillipps is awesome very caring and Im amazed how he pursued me when I was not cooperating with him. I thought I had other problems I seriously didn’t really understand what a hyperparathyroid disorder was until I listened to the UA-cam stories! I now know there’s a huge difference between hyper and hypo parathyroid. I don’t have alot of brain power so Its been a slow journey. Over 15 years ago when the first Dr discovered the enlarged gland and I didn’t have any symptoms back then .
I only have one slightly enlarged parathyroid gland according to the special CT , that’s apparently the problem. But it sure has made my life miserable. It’s getting worse and worse now. In November when I canceled the CT I was doing fine. I didn’t think I had much of a problem compared to the many people needing more important surgeries. I actually was doing well back then ! Then end of January I got hit with what I and my GP call a IBS gut flare up diarrhea and gut pain! Well it’s not going away and the nausea is making me feel sick I have to force myself to eat! My 22 year old daughter was like this too and has had horrible heart symptoms and depression and nausea poor concentration still plagues her and forgetfulness, but I think the nausea and heart problems are better now since she got married. I know she’s not depressed anymore. So Why would some of her symptoms just go away? Mine did too come and go over the years.
Now I have no energy no memory I can barely function I can’t remember basic household tasks I can try to do something and just forget what I was doing. I have been sitting on the couch for months. No energy can barely lift such basic things like a casserole dish out of the oven!
I sure hope this surgeon will fix my problem. I hope and pray he has done this surgery before a lot. But knowing Canada there’s probably very few people who know about this problem if it wasn’t for Dr Phillipps I wouldn’t know! We used to go to the US all the time if I’d known what I know now I’d have looked into one of the Big Endocrine hospitals like the Norman endocrine Center . I pray Dr Hearn can do the job like everyone who’s testimony I hear about on UA-cam . Thank you so much for sharing about your story! For enlightening me to the fact my eating disorder my gut problem is part of this problem!! Thank you so much for caring!
Hello there! I’m so so sorry to hear it impacted your stomach too. ❤️ how are you doing now??
I will say that the surgery helped my stomach issues a LOT, but it didn’t cure them, and I believe I understand why now.
This is because when you have such toxic levels of calcium in your body, your motility slows down. When your motility slows down, it’s a breeding ground for issues. I developed SIBO and leaky gut because my motility was so impaired. Granted, I also have celiac, so that doesn’t help! 😝
Wishing you good health, I hope you’re feeling okay. ❤️
@@christinaneuweiler8541 Hi Christiana that makes sense. I have acquired Candida overgrowth because of the toxic levels of calcium and this has caused so many problems for me.
I’m still waiting for my surgery. Maybe you can answer a question. Did you get surgery at the Norman Parathyroid clinic? Do they always use the radioactive dye before they operate? I guess mine is a difficult case because my nodule is hidden so they have to find it.
@@andresfamily5599 I’m sorry to hear you’ve developed candida! Just know that you CAN heal from it. Better days are ahead. ❤️
I had my surgery at the Mayo Clinic, we also used the dye for the sestamibi to help them locate which parathyroid was the problem. :)
@@christinaneuweiler8541 Hi Christina So did they give you the dye right before the surgery so that your bad nodule was visible? Or did the surgeon just know from experience which one was bad? So you think the Candida will improve after my surgery? I have had this problem for over 15 years. Did you mean your nodule was only found on the Sestamibi scan also? Did you also have Candida and the surgery helped it?
Diane
Thank you for this video. Explaining in laymen's terms is very helpful.
I’m so grateful!
I had a thyroidectomy and one parathyroid gland removed a year ago. Since then my blood work has been extremely high. Fast forward 1 year. I was finally sent to a specialist more blood work, more scans, and they found the other 3 parathyroid glands had problems. Surgery scheduled for 3 weeks
Thank you for this. Very helpful.
You're very welcome! I am grateful you found it helpful.
@@christinaneuweiler8541, I actually found it quite comforting, having my surgical consultation today and found myself a bit anxious last night. The balance of reality and straightforward information, along with your post-surgery tips are invaluable. Bless you!
Thank you so much for all of the information. I’ve had high calcium levels for two years but they just tested my parathyroid level and it was high. I’ll be finding a doctor as soon as this corona virus stay at home order is lifted.
Paula Ingram you are most welcome, I appreciate your comment! So sorry that your diagnosis is coming at such a crazy time. Hoping you can get taken care of sooner rather than later!
Just had my surgery 5 days ago!!!
You should look for an endocrinologist that specializes in thyroid/parathyroid. Once confirmed the only option is surgery. Don't wait for pain and symptoms to occur. Endocrine surgeons is highly recommended but head & neck or general surgeons with decent amount of parathyroid experience may be your only option.
Wow. I had 3 adenomas removed back in April. No real downtime. If you can afford the online consulation fee, I would highly recommend the Norman Parathyroid Clinic in Tampa. My surgery only took about 20 minutes. No real postoperative pain, no real swelling or discomfort. Got back to the hotel about 10 am on the day of surgery, took a nap for an hour, and then went off to explore museums. Normal food on the day of surgery and after.
Niuna Piedra wow, I’m so happy you had such a positive experience with them!
@@christinaneuweiler8541 I was happy to read about your positive experience, and hoping you are feeling great now.
Niuna Piedra thank you so much. I am feeling much better!
Hi Nuina,
Just read your post. I am having surgery at the Norman Parathyroid Center in Tampa in a few weeks.
I live in the Tampa area thankfully!
Any tips you can share to make this a better experience?
Many thanks!
Desi
@@niunapiedra7842 3 adenomas is unusual to hear about. Can I ask what your calcium and pth levels were? Hope you are feeling great now!
Thank you. I have just been diagnosed.
Wishing you good health and healing ❤️
Thx you..Great info..I feel better..ty bcuz of Covid there putting it off till Feb...My joints are hurting so bad..Feel brain Fog, n anxiety. ..ty my cal. is 144..I'm looking forward to the surgery.ty so much🙏💕
Thanks for sharing this was so much more informative I heard that I had it from my doctor now we’re looking for the right doctor my calcium levels are to high but the pth was 157 and constantly having low d levels.
A Rescue Dogs Life I'm so glad you found it informative! Sorry you are dealing with this diagnosis. If you need help finding a surgeon, I'd recommend joining a Facebook group called "Parathyroid Disease Support and Awareness." Members have compiled a list of surgeons they have used that they used, and it may help you! Best of luck to you.
Hope all is well. Have needed the surgery for over 2 years. Just now getting it scheduled. Looking forward to feeling better. Thanks for the information.
Hey Justin! Thank you, I’m happy to report no more parathyroid issues (albeit, I have other unrelated health stuff). Feel free to let me know how surgery goes! Will be praying for a positive outcome and quick healing :)
@@christinaneuweiler8541Do you care to share what your other health issues are?
How did surgery go? I'm curious how there's some people who have never replied after surgery - makes me wonder if they made it or not 🤔
@@gnosisdespirit thanks for asking. It went ok. Very little scaring and only one of the glands needed to be removed.
I’m about to get mine removed in a couple weeks. My calcium level has been 11.5 for what the doctors think about a year. I can’t wait for the surgery! I’m constantly fatigued, have stomach pains and have been forgetting things a lot lately. I’m a 36 yr old male... so I’m constantly told it’s supper rare that I have this. Thank you for sharing our story. It really helped me out.
Chris James Hi Chris! Thanks for reaching out. I’m so happy that you found this video and that you found it helpful, that was definitely my goal when creating this video. Being that my calcium levels were very close to yours, I remember how awful I felt and I empathize with you. I’m very hopeful you’ll feel much better soon. My stomach issues are night and day and while I did see immediate relief, it did take a bit of time too. Overall, I feel a million times better having had the surgery. Keep me posted on how you’re doing!
Chris James how did you surgery go? Have you felt better since?
Great video! yes I have neck inner muscle cramps and I drink lots of water then feel better. My calcium is 10.5 says it is high. It can be so scary and your video explains a lot.. ty. My doctor seems good. She seems to know a lot. And awww your video explains my symptoms. I had many tests a yr ago and are being repeated now. Im in the process of this. Right a surgeon needs to do at least 50 of these surgeries in a month. Yes need to ask they check blood work while during surgery. Good idea. is your email on here? Id like to keep in touch with you if you don't mind.
💕
Great video!! My wife is having the surgery next month, we are traveling to a specialist in Florida (from Maryland). A bit concerned, this quelled it a bit.. thanks so much and good luck!
Edwin Chavous I'm so glad you found the video to be helpful! If you or your wife think of any more questions, please don't hesitate to reach out.
Edwin, did your wife have the surgery at Tampa General, Norman Parathyroid Center? Curious..
Is it the big Parathyroid center in Tampa? How was her experience?!
Got diagnosed in May 2017 had the surgery while 4 months pregnant in June 2017. Took them two hours to find one adeoma and they couldn’t keep me under that long so they didn’t search for the other ones. Come to find out my parathyroids aren’t in my neck which is weird as ever (I feel like an alien now). Calcium levels still are up coming from my Endocrinologist my level is back to 14.8... fatal levels are 16. Current doing all these test and waiting for a 4DCT of my chest cavity because they say it’s behind my heart and it will give the precise location for surgery. Long story short I have to get my chest cracked open to get it... 2017 was bad had to walk around with a machine strapped to me that pushed saline in me 24/7 to keep myself and my unborn safe. I’m so over this, Endocrinologist currently looking for a specialist because of my rare case
stephanie roundtree goodnsss gracious I am so sorry your case has been such a burden! I’ve heard that some people have parathyroid adenomas in their chest cavity and have to get a thoracic surgeon consult because of it. Please keep me posted on how you’re doing. You’ll be in my thoughts and prayers!
😔 hru doing I pray for ease for u.
I am due to have a surgery and i am 11 weeks pregnant.
My kidney dr just checked my PTH levels. It was 159.. I have osteoporosis already, kidney stones and other issues. I am scared to say the least. Thank you so much for your video!!
Oh my, you must have been feeling awful!! I hope you’re doing much better now!
Before I knew I had hyperparathyroidism ..I had severe anxiety ..too much calcium in my blood ..osteoporosis from this disease ..too much for even my age .. they finally gave me my diagnosis pretty quick ..I just had surgery two days ago ..after cancelling 3 times because I was scared of surgery ..anyway finally had it two days ago ..all of my mines were bad ..they had to keep a portion in though ..I have a hard time swallowing now ....but thank you for this video . Learned somethings I should get
How are you now ?
Hey Christina, pretty insightful and at length. Im 35 and just underwent a complete parathyroidectomy with auto transplant last month. Im currently on high doses of calcium carbonate and lactate plus vit D. My case was compounded by the fact that i was a dialysis patient for 9 years and got a renal transplant last Sep. Just like you parathyroidism causes a lot of side effects and i was on some drug called cinacalcet to try and suppress the issue. However, my pth and calcium levels remained high after my renal transplant and so my doctors decided t would be best fro me to have my parathyroid glands removed to avoid the possibility of me developing kidney stones and also it was more economical for the hospital to get it surgically removed than to treat the problem.
Thank you for the kind feedback! Goodness, it sounds like you have been through a lot. I hope you are feeling well these days and that surgery was helpful for your health and happiness!
@@christinaneuweiler8541 things are much better. Thank you
I have hyperparathyroidism, I was diagnosed recently. I'm waiting for my ultrasound and surgery. My main problem are kidney stones, fatigue, muscle weakness, high blood pressure, depression and anxiety and brain fog. I want the blood pressure and brain fog to be gone. It has affected me with medical school.
noctis strife I’m so sorry you’ve been struggling with these symptoms! It really impacts your quality of life and school performance. I completely understand as I was diagnosed right when I was in grad school. I hope you can get treatment sooner rather than later so you can get back to feeling 100% again!
Wow I have these exact symptoms too Im going for my scan and after surgery most likely, How was the process are you fine now?
Really good video
Hannah Barnes thank you so much, Hannah!
thank you! Surgery coming up for me, I'm going to order that neck pillow today!
THANK YOU THANK YOU THANK YOU!! My surgery is in 3 weeks and I'm freaking out lol but you relieved me
You’re soooo welcome! Really grateful it helped you! :) I hope you’re feeling well!!
@@christinaneuweiler8541 Everything was easy as pie! A year later and feeling much better! Thank you for the response and concern💓
Thanks for this video. Definitely not just for post-menopausal women. 40 year old male, just diagnosed. Calcium of 11.2, PTH of 132.8. Otherwise still in the testing phase, so certain appreciate the info.
J P No problem, I hope you found it helpful! If you have any other questions, feel free to reach out.
Thank you so much for your very helpful information. My endocrinologist is one of those who has been monitoring my suspected parathyroid condition for more than two years now. My major symptoms are elevated levels of calcium and parathyroid hormones in my blood, and chronic fatigue. I have also suffered depression and lethargy. I am a bit concerned because I keep hearing that treatment should not be delayed, yet I have a very cautious doctor. You have armored me with meaningful questions and information. I have another appointment in a couple of weeks, and will now be more assertive thanks to you. I wish you the very best of health, and a complete recovery. Again, thank you for posting this informative video.
One thing is I found Vitamin deficiency was causing an over production of calcium and therefor I do medication therapy to keep these levels in check which then in return allow my parathyroid gland to work itself normally to an extent. I’m not a doctor but would recommend asking a doctor about this! Vitamin D can cause calcium levels to be abnormal when one of the two is abnormal.
Jacob I’ve heard a bit about this! Thanks for reaching out and sharing your info ☺️ my doctor said my vitamin D was within normal range, but I continue to check it every 6 months just in case!
Fab information. I’m having my surgery in 2 weeks time. Had my pre op today xxx
Hey Cennin- I hope you are feeling well post-op! ☺️
Sadly it’s was cancelled the day before surgery at 5pm. No new date given 😢😢😢😢😢
@@cencymru3338 oh no, how frustrating! I would bug them until you get a new date!
Trust me I am. I’m calling them daily. my surgeon is out of the country the whole of this month. X
@@cencymru3338 So frustrating for you I'm sure! Hang in there and keep me posted!
I have a hyper thyroid too I’m going surgery soon little bit nervous anyway thanks for sharing 🙏
Don't be nervous! Healing is coming your way soon. :)
Had high calcium on routine bloodwork with my internist. He had stopped treating my thyroid 3 years ago and I found a great thyroid specialist who has been treating my thyroid. Luckily she also is a endocrinologist surgeon and has a lot of experience with this. My problem is I don't have insurance I am a self-pay. She did the parathyroid blood test and said yes this apparently is a problem but that in my case it could wait until I get Medicare in 3 years if I wanted to. However there are two words that I fear more than the loss of just paying for this out of my pocket. Kidney stones. I'm not going to wait around for those, so far my main symptoms seem to be horrendous brain fog generalized pain which I thought for years was fibromyalgia and it may still be fibromyalgia because my calcium levels didn't go up till about a year ago but what kills me is the brain fog which has increased 200 fold. I don't walk into a room and forget what I went in there for. I walk into a room and I'm totally unaware that I have walked into a room and I look around and say how did I get here and why am I here... I drive a school bus and if I do not hyper focus on where I am and where I am going, I will forget to go into every single neighborhood to pick up all my students and I end up at my school with only half the load. Luckily my manager is very understanding and has been working with me. The surgery the surgery center and the anesthesiologist total about $4,800. I do have it and I'm going to go ahead and have this surgery done so I can feel better. I'm 61 and 3 years is a long time to not feel good so to me this is going to be money well spent. I'm lucky I'm a saver so I do have the money, and I'm lucky that my thyroid specialist also treats this condition. Any encouraging words sure would be nice I haven't finished watching your video yet but I'm about to. I wanted to read the comments from others before I watch the entire video so I would be prejudiced
dobie gal- what is your PTH level? Its my understanding that Thyroid issues and Parathyroid issues are unrelated and completely separate from each other. You may need a second opinion.
dobie gal I’m sorry you are struggling so much with brain fog! Thank goodness you have saved money so that you can prioritize your health. I didn’t have severe brain fog but certainly felt much more “clear” post-op. I hope the same for you! Good luck! ☺️
@@terrib7981 they are NOT related. My doctor stated that. This is a coincidence that both problems occur. However, the nuclear iodine I drank for treating Graves has shriveled up my thyroid gland, and the doctor ISN'T so sure they are where they normally would be.if you read my post, it says she treats BOTH issues. No one implied they were related to the others. Stop being so frigging paranoid. If the test showed high PTH I'm not saying that it was caused by my thyroid issue which was treated 30 years ago. Read things more carefully before spewing off advice.
I had my operation at the Norman Parathyroid Center in Tampa. My main symptom was heart palpitations daily. I went through cardiac testing extensively, and they did not diagnose the problem correctly. Eventually, a physician's assistant noticed high calcium levels after a blood test and called me on the phone. She's my saving angel. After two years of heat palpitations, I had my surgery in August 2021 and have been healthy ever since. I'm now 72 years old. You didn't mention osteoporosis, but it wouldn't be a problem at your age. For older women, it needs to be addressed.
I am 21 years and I am going to have this procedure done.
Chandler Johnson best wishes to you! Let me know if you have any questions.
Christina MacAuley thank you.
Just had mine removed last Thursday, 8 days today after parathyroidectomy! Feel fine but will take it easy for the next 2 weeks before going back to work.
I need surgery, reaching out to Mayo Clinic. Would greatly appreciate your surgeons information.
Thank you for your video, brought me comfort. I’m terrified of surgeries.
Thank you again!
I’m so glad you found the video helpful! It was my first surgery and I was so scared too, but everything went just fine. ❤️
Dr. Chee Chee Stucky is who I saw! She is AMAZING. You can hardly see my scar at all anymore. They were so thorough and I could feel her joy along with me when she saw me making improvements.
www.mayoclinic.org/biographies/stucky-chee-chee-h-m-d/bio-20163956
Best wishes to you, let me know how it goes if you remember! And if you see Dr. Stucky, tell her I say hello :)
my calcium level is 11.8 so i am now getting surgery the 19th of april could not be more exited
I hope you are feeling well now!!
thanks for the post op report. I have yet to see one as extensive as yours. The doctors won't schedule me for surgery cause the Cardio guy wants some of the action.
Thank you for the kind comment! I tried to find the balance between thorough and not too terribly long. Hoping you can get surgery and healing soon!!
I'm so glad you're feeling better and with being so young that they finally caught it ❤
Can I ask who was your doctor at Mayo? If you don't want to post on here can you send me a pm? I would appreciate it 😊
Kim Scaccia of course!!
For my endocrinologist, I saw Dr. Westphal (at Scottsdale) My surgeon was Dr. Chee Chee Stuckey (At Phoenix), who is AMAZING!
Thank you Sweetness, Great video! 😁
Thank you for your comment! :)
very helpful.
Thank you so much for sharing this. I just heard back from my doctor yesterday about my high calcium levels and I have to go get more blood tests to really find out if it's my parathyroid glands. I'm really nervous to find out but at the same time I have to know. I'm also 24 and literally thought I was the only young person with this problem lol.
You’re so welcome! Thank you for the comment! It’s so strange being a younger person with this issue, isn’t it? I’m happy they are investigating for you, seriously no one thought to check this out for me due to my age! Make sure they check your calcium levels (also ionized levels) at the same time they pull your PTH levels! Also some encouragement if it is of value to you- my scar is almost entirely gone now that I’m a year post op. It was really visible in this video but now you have to realllllly point it out! Younger skin heals up pretty well I’d say! ☺️
@@christinaneuweiler8541 It is! A little update now: My levels have been up and down ( ionized calcium and PTH levels) but there is a high level of calcium in my urine and since I'm young my Dr thinks I have multiple endocrine neoplasia (also have to get tested for that). I still have to get a cat scan of my thyroid and parathyroid but if I have multiple endocrine neoplasia than I'll definitely need surgery... I just feel so frustrated because I just wanna know what's wrong with me!!! But if I do need surgery than that information about the scar really helps!
Kfricch it’s so interesting you say that- my endocrinologist is going to check me for Multiple Endocrine Neoplasia (MEN) too! I want to be aware if I need to be on the lookout for other adenomas throughout life. Keep me posted on what they say!
Christina MacAuley oh that is kind of funny! Well I hope you don’t have MEN. Keep me updated and yes I will be sure to let you know when I find out!