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texgranny
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 Posted: 07/19/08 - 22:38 Post subject: Re: Life after parathyroidectomy |
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| uknown parathroid problem wrote: | | mass wrote: | I was ready to hop a plane to FL as soon as I found out my PTH was high but my endocrinologist does not agree with Dr. Norman. She thought that the high PTH was secondary to Vitamin D deficiency. I've read and read and read and that does seem to be a traditional view. I've been taking magadoses of Vitamin D and it now tests normal but PTH is still high so now the Dr. thinks that maybe the PTH really is the primary problem. I do sleep better and have fewer pains in my chest.
I think that I don't have as many symptoms or they are milder since my calcium is normal. Besides osteoporosis I have acid reflux which is helped quite a bit by Prevacid but I don't want to take it forever. (You know, they are trying to learn whether those medicines affect the bones - just what we need!) I have some other digestive issues which haven't changed with the Vitamin D. I also have Trigeminal Neuralgia and according to Dr. Norman it could be connected to hyperparathyroidism. No one knows much about that either.
I go on vacation in a few days and will see the Dr. when I get back. |
You know the crazy thing about parathyroid disease is the calcium will test normal from time to time. There have been rare cases with a high PTH and normal calcium. I took so much med for reflux and stomach over the years I wished I had purchased stock in their company. Since surgery NO reflux. My endo had me take large doses of calcium w/d and my calcium went so high I am glad I didn't have a stroke. Surgery was the best thing I have done. Choose your surgeon wisely...txgranny
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 |
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texgranny
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| Posted: 07/20/08 - 18:20 Post subject: Re: hyperparathyroidism? |
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| Guest wrote: | 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. |
Guest : I found that most GP's don't know a lot about hyperparathyroidism. They will put you through a battery of test and still no answers. Were your labs done fasting? Your calcium and PTH levels concern me. Not all people have bone pain. Please find you a doctor that will listen to your concerns and repeat your labs sooner that 6 mos. If not move on. If you take calcium please wait at least 4 hours before doing lab work. Educate yourself and ask lots of questions. This disease is very hard to diagnose. There are wonderful surgeons out there. Choose your surgeon wisely.Read parathyroid.com and Google Dr Chen at UCLA...
I also had a negative scan..Had three tumors. Scans shoud not be a diagnosis tool. Good luck and keep us posted...TXG |
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texgranny
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| Posted: 07/21/08 - 12:48 Post subject: Re: hyperparathyroidism? |
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| texgranny wrote: | | Guest wrote: | 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. |
Guest : I found that most GP's don't know a lot about hyperparathyroidism. They will put you through a battery of test and still no answers. Were your labs done fasting? Your calcium and PTH levels concern me. Not all people have bone pain. Please find you a doctor that will listen to your concerns and repeat your labs sooner that 6 mos. If not move on. If you take calcium please wait at least 4 hours before doing lab work. Educate yourself and ask lots of questions. This disease is very hard to diagnose. There are wonderful surgeons out there. Choose your surgeon wisely.Read parathyroid.com and Google Dr Chen at UCLA...
I also had a negative scan..Had three tumors. Scans shoud not be a diagnosis tool. Good luck and keep us posted...TXG |
Oops! Dr Michael Yen at UCLA Med Center..Can view him on Youtube also |
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kingspec
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| Posted: 08/06/08 - 13:22 Post subject: Parathyroid surgery |
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Had one parathyroid removed a week ago today. Sorry to see so many folks seeming to have major complications after their surgery.
In my case (55YO male), I hadn't realized the symptoms I had been experiencing for numerous years--dizzyness, bone aches, inability to concentrate, major forgetfullness, etc., could be caused by this disease. Just thought I was getting old! Didn't occur to me to discuss these things with my GP. I have type II diabetes, treated with oral meds, and seldom saw a doctor unless I couldn't get my scripts refilled. What led to the discovery of hyperparathyroidism was a visit to the doc after experiencing blood in my urine. Extended blood tests found the high calcium levels, and a CTscan showed kidney stones. The endro doc found the grape-sized parathyroid in an ultrasound exam. Bone density exam showed no signs of bone loss; attributed to having been a weight lifter with HUGE bones earlier in life. In case someone is interested, my pre-surgery test numbers were: PTH 105 calcium 11.7 24-hour urine .60 gm/day (standard is .12 - .28)
I'm happy to report that one week post surgery, the constant bone pain I had in my shoulder is gone, I feel clearer-headed, have more energy than I've had in a long time, and generally feel much better. The only exception I'd make is the continued pain of swallowing, tightness in the throat, and general discomfort in the 2" area of the incision. I'm assuming it takes more than a week for this to go away!
For anyone contemplating this surgery--sure doesn't seem like a big deal to me at this point. It's a no-brainer. If the numbers indicate you have an out-of-whack parathyroid, get it taken out!
As a final note, after studying this topic on the Internet before surgery, I had visions of needing to go to Florida like I've seen others post about. Had my surgery right here in northern Colorado, with a surgeon who performs about a dozen a month. Had to wait two weeks from final diagnosis as they schedule five-to-six, back-to-back, twice a month. At least here, this surgery must be more common than previous posters have reported. |
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mass
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| Posted: 08/06/08 - 16:01 Post subject: parathyroidectomy side efects |
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Kingspec, are you in Fort Collins? I know other people have talked about having surgery there. I don't remember the doctor's name.
My Denver endo only wants to monitor since US and scan were negative. I've had bloodwork a number of times and PTH is always high (86-125) and calcium is always in the 9's so I'm not as easy to diagnose as many people. I also don't feel as bad as others but I do have osteoporosis and reflux plus various pains and digestive problems.
I'm really frustrated with playing around with this thing and I'd like to get it taken care of.
Thanks for posting your info. |
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texgranny
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| Posted: 08/06/08 - 17:11 Post subject: |
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Kingspec: Glad you are doing so well after surgery. The neck stays a little tight and sore for a few days. Hope your labs after surgery are good.
Keep in touch so we know how your are doing.....Txgranny
Mass: Yes your case seems to be as rare as mind. Some people have parathyroid disease with a high PTH and normal calcium. This disease never gets better on its own. I wasted 6-10 years on a "wait and see" attitude. Find a Dr that will listen to your concerns and educate yourself on this disease. Lots of info out there and choose your surgeon wisely. Best of luck and keep us posted...Txgranny |
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mass
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| Posted: 08/06/08 - 22:11 Post subject: parathyroid |
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Texgranny - You are so good to keep track of everybody. I hope you are doing better too.
I have read and read and read and have practically memorized Dr Norman's site. My endo doesn't agree with him at all and her views seem to be the traditional way of handling hpt. I thought she was too young to have much experience with the disease but she says that she refers a pt a month for surgery. I hoped the scan would be positive then I would know who she refers to. I could go to another dr but it would just be picking a name and might not be any better and would be a long wait.
I've been away a lot this summer and have one more trip coming up. When I get back it will be time to do bloodwork again then I intend to have a talk and raise a lot of questions. She's really good about calling me and I like her - I just don't agree with her.
I don't know who besides Dr Norman will do surgery with a negative scan. Apparently they don't all do a scan just before surgery.
I don't feel as bad as most people and the Vitamin D has helped, but not eliminated, a lot of discomfort. I just don't like taking Prevacid and having my bones disolving. I think that some medicines that I was taking contributed to the osteo. I wonder if it is too soon to repeat the density scan.
Take care and thanks. |
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texgranny
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| Posted: 08/06/08 - 22:39 Post subject: |
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| mass: Have you ever emailed Dr Norman? That is what I did. I could not get a diagnosis and I felt he was my last hope. Just send him a brief note with current labs and a list of your symptoms. It may take a while to hear from him, but he will answer. He is very much to the point and some people don't like that. What concerns me the most is that this disease is so under diagnosed and people loose YEARS of quality life. You may have a good surgeon in your area, I didn't and I had been to major Medical Centers in Texas looking for answers. Two endo would not make the diagnosis because my labs were not a "textbook" case. If you have read my "numerous" post...lol..you will see that I am adamant about this. Good luck to you...Best regards...TxG.....keep in touch |
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mass
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| Posted: 08/07/08 - 14:20 Post subject: parathyroid |
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texgranny- I corresponded with Dr Norman for a while. I usually had a response within hours and I was rather amused by his brusqueness. I had to find a back door to get the lab work done as he suggested as my endo wouldn't order the tests so close together.
When I emailed him the results I told him that I was taking the Vitamin D as my dr wanted. I got no response. I sent three emails over the course of three weeks and got no response so I gave up on him. I know he doesn't agree with taking Vitamin D but my dr was adamant that you have to consider that possibility before you consider surgery. However, I wouldn't hesitate to contact him again if I needed him.
I leave tomorrow and we'll see what happens when I get back. I don't intend to let this go on for years.
Hope you are doing better. |
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texgranny
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| Posted: 08/07/08 - 14:38 Post subject: |
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| Mass: Sounds like you have things under control. I am feeling better, thank you. I so hope my next labs will be in the "normal" range. Stay in touch...Txg |
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