I had an adenoma removed in April of 2007. My muscles still ache, and my bones actually hurt, i.e., if I get on my knees, my bones hurt. When I wake up in the morning, I'm stiff. This has all happend post surgery, before surgery, the symptoms were really bad, but different than this. I have been deficient in Vitamin D, but other than that, blood levels of everything is normal. I'm thinking that having this disease has done permanent damage to my muscles and bones. I continue to work out at the gym, work through the pain, but not a day goes by that I do not hurt. Docs say is should not be this way, but, it is. I was glad to read these posts because I thought I was the only one who felt like this. Thank you!
texgranny wrote:
You really need to get both ionized and serum calcium checked! as well as recheck pth. I'm 9 months post surgery and it's finally coming. Right now I'll feel really good then have a set back for 3 days or so. Also make sure you're taking a calcium sup. I take 1 every 12 hrs faithfully. Hang tough!!!!!!
labyrinth wrote:
I had a parathoridectomy in January 2008 after a long period of problems and problems getting a correct diagnosis or surgery. I had one adenoma removed that was benign. I noticed immediate improvements in cognitive functioning that continues to improve. However, I feel like I have the flu with such pain that I often wonder if it is worth living with such pain. I gave up on doctors when I had such a problem getting a correct diagnosis and getting a surgeon to take me seriously. The pain is like having the flu--my whole body hurts to the point that it feels numb and the pain keeps me up or wakes me up at night. Half of the time, tramadol is effective in controlling the pain. However, tramadol does not help at night when I sleep. I have known I was not crazy but have also known that most doctors will tell you you have a psychiatric problem if they cannot figure out what is wrong with you. I have very little faith in the medical profession's ability to think outside the box.
It has been almost 7 months since my parthyroidectomy, and I think I am about 80% disabled from being able to work or do daily activities without pain pills that work only half of the time.
I was gratified to find this discussion to see that I was not alone in this experience.
9
Have you had lab work done lately? what was your calcium and pth levels?
Are you taking calcium supplements and multiviamin? I am so sorry to hear of all your pain. That is the kind of pain I had before surgery. I am three months post surgery. It is very hard to get a doctor to take this disease seriously. They all think we are nut cases...lol..have you spoken with your surgeon? please don't give up there is a doctor out there for you. do you mind posting what state you live in if you are in the US.
You really need to get both ionized and serum calcium checked! as well as recheck pth. I'm 9 months post surgery and it's finally coming. Right now I'll feel really good then have a set back for 3 days or so. Also make sure you're taking a calcium sup. I take 1 every 12 hrs faithfully. Hang tough!!!!!!
I am three months post surgery and my labs are still crazy. Calcium 10.7 and PTH 5 (yes I said 5) I had hyperplasia and have one gland remaining. I am not sure what to do. I have decided I may always have high calcium. Even though Drs say it is never "normal" to have high calcium. Guess I am not normal. Feel pretty good and getting stronger and I don't want to dwell on the negative. I am just curious and would like to hear from anyone that had hyperplasia and how they are doing. Thanks..txg
Love this site, and it's educational benefits.. HOWEVER,, from all I have read, if you need the surgery for hyperparathyroidism, then it is best to go ahaead and do i ASAP...However, the range of people's negative post surgical symptoms makes me bery nerveous........Do MOST people feel and do better after surgery,, OR is it equally divided?
Not anxious to have procedure where I might feel works aftarwards.
thanks< %-)
Not anxious to have procedure where I might feel works aftarwards.
thanks< %-)
Hi, you know it may be divided. My experience has been mixed. I had been so sick for so very long anything would have been an improvement. My Drs told me all my symptoms probably wouldn't go away, but I took the chance anyway. The bone pain is gone and my energy level is better and I surely feel better than I did year ago or even three months ago. My case was rare from the beginning and I ended up with hyperplasia and they removed three glands. My biggest regret is that my pcp didn't follow up on all the years I had high calcium. I had to seek my own Dr. I wasted some good years. I really believe most people feel better after surgery. You must choose your surgeon wisely. I had no problems with surgical procedure itself and the very next day my bone pain was gone. I had a little sore throat and some swelling. I did not know I had hyperplasia before surgery as my scan was negative, That was my first scan. I hate to keep going on and on, but I am sure by now you know hyperparathyroidism is very complicated. I went to Tampa because of the MIRP procedure. I have stated many times on here I would do it over again in a heartbeat. My calcium levels are not as good as we would like, but I hope that will improve in time. If you decide on surgery, please keep us posted and I will be more than happy to answer any questions. Please stay positive.
Best regards, Texgranny
Best regards, Texgranny
ALL WENT WELL...I HAD ONE PTH REMOVED...MY CALCIUM IS NOW 9.4...SURGEON SAW NO NEED TO PUT ME ON CALCIUM...I FEEL GOOD SO FAR...JUST GOING THROUGH THE HEALING PROCESS, WHICH IS SOMEWHAT UNCOMFORTABLE AT NIGHT WHEN I LIE DOWN...I'M TAKING VITAMIN D, 1,000 IU ABOUT 3 TIMES A WEEK...D LEVEL IS AROUND '18'... I'M 56 Y/O AND THE ONLY SYMPTOM I HAD 1 1/2 YEARS AGO TO DATE WAS FEELING TIRED ALL THE TIME, NO JOINT OR MUSCLE PAIN, NO HEADACHES, I'M OSTEOPENIA, BUT THAT COULD BE BECAUSE I HAD A TOTAL HYSTER IN 2004 AND I'M NOT ON ANY HORMONAL THERAPY ... BUT THIS IS ONLY DAY 5 POST MY PTH SURGERY...MY SURGEON WAS DR M. FLYNN OF LOUISVILLE KY.
Wonderful!!! Glad your surgery went well and your calcium is normal. Are you sleeping on two or more pilllows? that really helped me and kept the swelling down. I was probably 56 y/o when my symptoms began. I am so happy you found a Dr early on and didn't waste good years. Keep us posted as your recover. Let us know when you have follow up labs and their levels. Best Regards, Texgranny
THE LABS I HAD 7/11 SHOWED MY CALCIUM LEVEL AT 9.2...I SLEEP IN A RECLINER AND AM OFF WORK FOR 2 WEEKS...HOPE MY SCAR LOOKS OK TO GO BACK TO WORK IN 2 WEEKS....I'LL KEEP ALL POSTED ON MY RECOVERY
Hi, glad things are looking good for you. Is your incision very large? I am praying for the day when my Calcium is lower. Still a little high on my last labs. I am not giving up hope. Hey I just consider my scar a new piece of jewerly. You know it was quite expensive...lol..
I just found out that when I had my left lobe thyroid removed they had to remove an enlarged parathyroid gland also........ but what caught my attention when reading your comment was the NEURALGIA.... I have had that for 12 years........ numerous scans even recent scans that never showed the thyroid or parathyroid enlargements........maybe they are related to the neuralgia........ so far I feel OK..... alot of hot flashes though
Trigeminal neuralgia is the stabbing/burning pain in the face that occurs along the trigeminal nerve. There are several theories about what causes it and there are surgeries and nasty medicines that may or may not help. Mine is milder than most people's (but still very painful at times) and is kept under control by frequent chiropractic adjustments.
When I first read Parathyroid.com I thought that the connection between calcium and nerve function might have something to do with the pain. I emailed Dr. Norman and asked if he had ever seen a connection between TN and parathyroidism and his answer was simply, "Yes, there can be a connection." I've had numerous blood tests and my calcium has always been in the 9's and ionized calcium is normal, so I don't know. I do have osteoporosis and that may be partly related to an overdose of thyroid supplement.
I also had a lot of pains in my chest, underarms, etc and that prompted heart tests, bone scan, CT scan, etc. The pains are mild and less frequent since I started taking the Vitamin D but they were really awful for the first week or so that I took it. I think that they are muscle spasms but they were so strong that after a couple of days it hurt to take a deep breath, like when you have a really bad cough. The pain and cramps lessened after a few days so it must be Vitamin D/ parathyroid related. I've always thought that my "heartburn" felt more like muscle spasms but Prevacid does help the reflux.
My other thought is that the physical presence of an enlarged gland ( I have thyroid nodules too) might affect the alignment of the neck. My chiropractor beleives that the TN is due to a C2 sublaxation - and the adjustments certainly do make a difference.
Finally, after about six months, I have a scan scheduled for the 28th. I'm one of those hard to diagnose people as everything tests normal except PTH which has been between 86-125 on half a dozen tests. I take the Vitamin D every other week now and it has tested normal for 3-4 months.
I don't know if that answers your neuralgia question but that is my experience. My heart goes out to everybody with this nasty parathyroid problem.
When I first read Parathyroid.com I thought that the connection between calcium and nerve function might have something to do with the pain. I emailed Dr. Norman and asked if he had ever seen a connection between TN and parathyroidism and his answer was simply, "Yes, there can be a connection." I've had numerous blood tests and my calcium has always been in the 9's and ionized calcium is normal, so I don't know. I do have osteoporosis and that may be partly related to an overdose of thyroid supplement.
I also had a lot of pains in my chest, underarms, etc and that prompted heart tests, bone scan, CT scan, etc. The pains are mild and less frequent since I started taking the Vitamin D but they were really awful for the first week or so that I took it. I think that they are muscle spasms but they were so strong that after a couple of days it hurt to take a deep breath, like when you have a really bad cough. The pain and cramps lessened after a few days so it must be Vitamin D/ parathyroid related. I've always thought that my "heartburn" felt more like muscle spasms but Prevacid does help the reflux.
My other thought is that the physical presence of an enlarged gland ( I have thyroid nodules too) might affect the alignment of the neck. My chiropractor beleives that the TN is due to a C2 sublaxation - and the adjustments certainly do make a difference.
Finally, after about six months, I have a scan scheduled for the 28th. I'm one of those hard to diagnose people as everything tests normal except PTH which has been between 86-125 on half a dozen tests. I take the Vitamin D every other week now and it has tested normal for 3-4 months.
I don't know if that answers your neuralgia question but that is my experience. My heart goes out to everybody with this nasty parathyroid problem.
Trigeminal neuralgia is the stabbing/burning pain in the face, along the trigeminal nerve. There are several theories about what causes it and surgeries and nasty medicines that may or may not help. Mine is milder than most and is kept under control by frequent chiropractic adjustments.
When I first read Parathyroid.com I thought that the connection between nerve function and calcium might explain the pain. I emailed Dr. Norman and asked if he had ever seen a connection between TN and parathyroid. His answer was simply, "Yes, there can be a connection". I've had numerous blood tests and my calcium is always in the 9's and ionized calcium is normal, so I don't know.
I also had pains in my chest and underarms which prompted heart tests, bone scan, CT scan, etc - all normal. The pains are very mild and less frequent since I am taking the Vitamin D though for the first week or so the pains were terrible. After a couple of days it hurt to take a deep breath, like when you have a bad cough and the chest muscles hurt. I also had leg cramps. It lessened after a few days so I think the pains are Vitamin D/parathyroid related. I think they are muscle spasms. I've always thought that my "heartburn" felt more like muscle spasms. Prevacid does help the reflux though.
My other thought is that just the physical presence of an enlarged gland (I have thyroid nodules too) might affect the neck alignment. My chiropractor says that the TN is due to a C2 sublaxation and the adjustments certainly do help. He doesn't think that the lumps would cause the problem.
Finally, after about 6 months, I have a scan scheduled for the 28th. I'm one of those hard to diagnose people as everything tests normal except PTH which has ranged from 86 to 125. I take the Vitamin D every other week now and it has tested normal for 3-4 months.
I don't know if this answers your neuralgia question but it is my experience. My heart goes out to everyone who has this nasty parathyroid thing.
When I first read Parathyroid.com I thought that the connection between nerve function and calcium might explain the pain. I emailed Dr. Norman and asked if he had ever seen a connection between TN and parathyroid. His answer was simply, "Yes, there can be a connection". I've had numerous blood tests and my calcium is always in the 9's and ionized calcium is normal, so I don't know.
I also had pains in my chest and underarms which prompted heart tests, bone scan, CT scan, etc - all normal. The pains are very mild and less frequent since I am taking the Vitamin D though for the first week or so the pains were terrible. After a couple of days it hurt to take a deep breath, like when you have a bad cough and the chest muscles hurt. I also had leg cramps. It lessened after a few days so I think the pains are Vitamin D/parathyroid related. I think they are muscle spasms. I've always thought that my "heartburn" felt more like muscle spasms. Prevacid does help the reflux though.
My other thought is that just the physical presence of an enlarged gland (I have thyroid nodules too) might affect the neck alignment. My chiropractor says that the TN is due to a C2 sublaxation and the adjustments certainly do help. He doesn't think that the lumps would cause the problem.
Finally, after about 6 months, I have a scan scheduled for the 28th. I'm one of those hard to diagnose people as everything tests normal except PTH which has ranged from 86 to 125. I take the Vitamin D every other week now and it has tested normal for 3-4 months.
I don't know if this answers your neuralgia question but it is my experience. My heart goes out to everyone who has this nasty parathyroid thing.
texgranny wrote:
TEXGRANNY,
Thanks so much for your information and support.. I imagine the risk of loosing even more calcium, and osteoperosis, kidney stones, etc are all quality of life reasons FOR surgery... I just feel badly when reading how miserable some folks still feel, after the surgery.. I am not decided on where to have it done.. IN Fla, or up north, where I live... I cannot decide, but have read mostly positive things about Dr Norman.. What I fear, is that there is no surgical follow up, if needed.....Hazey.. Ps I hope you feel much better every week that goes by...will try to stay positive, as you wisely suggested.
hazey wrote:
....Do MOST people feel and do better after surgery,, OR is it equally divided?
Not anxious to have procedure where I might feel works aftarwards.
thanks< :?
Hi, you know it may be divided. My experience has been mixed. I had been so sick for so very long anything would have been an improvement. My Drs told me all my symptoms probably wouldn't go away, but I took I really believe most people feel better after surgery. You must choose your surgeon wisely. I had no problems with surgical procedure itself and the very next day my bone pain was gone. I had a little sore throat and some swelling. I did not know I had hyperplasia before surgery as my scan was negative, That was my first scan I went to Tampa because of the MIRP procedure. I have stated many times on here I would do it over again in a heartbeat If you decide on surgery, please keep us posted and I will be more than happy to answer any questions. Please stay positive.
Best regards, Texgranny
TEXGRANNY,
Thanks so much for your information and support.. I imagine the risk of loosing even more calcium, and osteoperosis, kidney stones, etc are all quality of life reasons FOR surgery... I just feel badly when reading how miserable some folks still feel, after the surgery.. I am not decided on where to have it done.. IN Fla, or up north, where I live... I cannot decide, but have read mostly positive things about Dr Norman.. What I fear, is that there is no surgical follow up, if needed.....Hazey.. Ps I hope you feel much better every week that goes by...will try to stay positive, as you wisely suggested.
I just found this forum and was glad to find it. All the question and responses give a lot of insight into the topic.
This topic is new to me. My cardiologist sent me to my regular doctor last week when he saw that my serum calcium was 11. The GP does not think I have hyperparathyroidism because the sestimibi was negative, even though my calcium ranges between 10.3 and 11, and the two PTH scores were 82 and 95. The GP only asked about frequent urination, but then attributed it to possible prostate problems. He also asked if I took calcium or vitamin D supplements. There were no question about other symptoms, nor were there any suggestions about getting tests for osteoporosis, 24 hour urine or kidney stones. He just said we would check it again in 6 months.
I don't have any bone or joint pain or headaches, but don't have much energy and have muscle weakness, fatigue and trouble concentrating at times. I am hypertensive but so are all of my relatives. I have atrial fibrillation, and this is my big problem. It's a daily concern.
Should I change doctors? In light of what I'm reading about hyperparathyroidism I wonder how knowledgeable he is.
This topic is new to me. My cardiologist sent me to my regular doctor last week when he saw that my serum calcium was 11. The GP does not think I have hyperparathyroidism because the sestimibi was negative, even though my calcium ranges between 10.3 and 11, and the two PTH scores were 82 and 95. The GP only asked about frequent urination, but then attributed it to possible prostate problems. He also asked if I took calcium or vitamin D supplements. There were no question about other symptoms, nor were there any suggestions about getting tests for osteoporosis, 24 hour urine or kidney stones. He just said we would check it again in 6 months.
I don't have any bone or joint pain or headaches, but don't have much energy and have muscle weakness, fatigue and trouble concentrating at times. I am hypertensive but so are all of my relatives. I have atrial fibrillation, and this is my big problem. It's a daily concern.
Should I change doctors? In light of what I'm reading about hyperparathyroidism I wonder how knowledgeable he is.
hazey wrote:
Hi Hazey: Good to hear from you. I know surgery is a big decision for anyone. I am sure you have been told the only cure for hyperparathyroidsim is surgery. After care is very important. My Dr in FL has worked well with my pcp. His nurse is wonderful and has lots of patience. She answers all my emails. She even called me last week. I am sure you have read my other post that my case is somewhat rare. So I guess you would say I am still a work in progress...lol...please educate yourself on this disease and don't be afraid to ask questions. I don't know your age, but I am 62 y/o and I am happy I went to FL. I am feeling better. Stay in touch...Txgranny
texgranny wrote:
hazey wrote:
....Do MOST people feel and do better after surgery,, OR is it equally divided?
Not anxious to have procedure where I might feel works aftarwards.
thanks< :?
Hi, you know it may be divided. My experience has been mixed. I had been so sick for so very long anything would have been an improvement. My Drs told me all my symptoms probably wouldn't go away, but I took I really believe most people feel better after surgery. You must choose your surgeon wisely. I had no problems with surgical procedure itself and the very next day my bone pain was gone. I had a little sore throat and some swelling. I did not know I had hyperplasia before surgery as my scan was negative, That was my first scan I went to Tampa because of the MIRP procedure. I have stated many times on here I would do it over again in a heartbeat If you decide on surgery, please keep us posted and I will be more than happy to answer any questions. Please stay positive.
Best regards, Texgranny
TEXGRANNY,
Thanks so much for your information and support.. I imagine the risk of loosing even more calcium, and osteoperosis, kidney stones, etc are all quality of life reasons FOR surgery... I just feel badly when reading how miserable some folks still feel, after the surgery.. I am not decided on where to have it done.. IN Fla, or up north, where I live... I cannot decide, but have read mostly positive things about Dr Norman.. What I fear, is that there is no surgical follow up, if needed.....Hazey.. Ps I hope you feel much better every week that goes by...will try to stay positive, as you wisely suggested.
Hi Hazey: Good to hear from you. I know surgery is a big decision for anyone. I am sure you have been told the only cure for hyperparathyroidsim is surgery. After care is very important. My Dr in FL has worked well with my pcp. His nurse is wonderful and has lots of patience. She answers all my emails. She even called me last week. I am sure you have read my other post that my case is somewhat rare. So I guess you would say I am still a work in progress...lol...please educate yourself on this disease and don't be afraid to ask questions. I don't know your age, but I am 62 y/o and I am happy I went to FL. I am feeling better. Stay in touch...Txgranny