Someone please help answer some questions. I am 53 yrs old female and have osteo L1-L4 Tscore is -3.1 Right femoral neck T score is -3.2. I just went to an endo because my osteo despite actonel, Boniva and Evista just keeps getting worse and worse. Now my doc send me a letter that my 24 hr urine test is still pending but I am a possible parathyroid surgery candidate. I am so upset I am still recovering from shoulder surgery I had to repair a torn labrum. I am going thru very painful physical therapy for that to regain ROM and now I get these news. I hate to be a cry baby but I feel llike I really can't take any more bad news or surgery. Can someone who knows please tell me what this is and what surgery is like and what will happen with surgery. Please!!!
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hyperparathyroidism
- By cm81256
- Posted September 9, 2009 at 7:08 pm · 73 replies
- In Osteoporosis/Osteopenia treatment
- Shared with the public
Explore topics in this discussion:
Surgery Boniva Forteo Physical therapy Fosamax Reclast Anxiety Hyperparathyroidism Synthroid Actonel Menopause Pain Weakness Osteoporosis Hypothyroidism Evista
73 replies
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- By John58
- Posted September 9, 2009 at 8:21 pm
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cm81256, I've done some research on hyperparathyroidism due to my recent osteoporosis diagnosis. The parathyroid glands sit around our thyroid gland. We have four of them. Their role is to regulate the amount of calcium in our blood. Sometimes one of the glands malfunctions and draws too much calcium from our bones to put into our blood. Hence the link with osteo. There is a clinic in Florida which specialises in parathyroid treatment. I cannot vouch for its bona fides since I live in Australia and stumbled across their website via Google. I've actually forgotten their name but if you do a Google search you should be successful.
Good luck luck with it all.
- By millie123
- Posted September 10, 2009 at 9:19 am
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cm: You may actually have received GOOD news here. Patients with parathyroid or thyroid cysts or tumors can take osteo drugs till the cows come home, but it won't stop the osteoporosis until that problem is taken care of. Then chances may be that your bones will start remodeling on their own.-- I'll try to search around and find a description on the surgeries and describe it for you. It will have to be much later. So don't cry. This may be good.
- By SantaFe
- Posted September 10, 2009 at 11:11 am
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Cm,
Millie's answer is spot on !
You've got some postive news because now you know what is causing this and can DO something.
But I would seriously think about dumping the doctor that allowed you to take 3 different dangerous drugs for years that didn't work and NEVER tested you for any underlying cause.
Did they check your vitamin D?
warmly, Santa Fe
- By millie123
- Posted September 11, 2009 at 5:41 pm
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cm: Looked up the surgery stuff on endocrine web. Sounds as though things are swinging toward Minimally Invasive Radioguided Parathyroidectomy (MIRP) these days. This technique started in Florida with Dr. James Norman, M.D. You can read the article at http://www.endocrineweb.com/minimalpara.html . Let us know what happens. Good luck.
- By cm81256
- Posted September 11, 2009 at 8:38 pm
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Oh my gosh. I read the article and was so surprised especially the part where the bones can actually reverse themselves and the osteo to greatly improve. Any improvement would be a godsend I have been taking Evista, Boniva, Actonel for 6 years. I have taken calcium til I am blue in the face and still my osteo always kept getting a little worse every year til now it is bad and dangerous! I went to an endo about 3 years ago and she found nothing and basically dropped the ball. This new one found all my calcium levels elevated I just wonder if he does this mimimally invasive surgery you led me to read. I am still trying to recover from my shoulder surgery PT/OT. Hopefully by then I will revisit the endo and know more but now that I have read the article I will be more educated and ask some good questions. Thanks to all who have answered and were so kind to take the time and do research. Bless you all. I will keep you updated when I learn more about what will happen.
- By millie123
- Posted September 14, 2009 at 8:06 am
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Stay positive. Good luck. And keep us all informed.
- By bettyrenshaw
- Posted September 14, 2009 at 12:17 pm
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CM81256
RIGHT! good news and simple surgery. I too printed out and carried to to my doctor! about parathyroid tests.
I requested the additional tests --- to prove that I had parathyroid tumor -- only to learn that I did not; mine was not the good news that you have that there is a cause, now, something that can help you.
- By millie123
- Posted September 14, 2009 at 5:00 pm
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I still find it hard to believe that no one sent you to an endocrinologist after so many failed drug things. ..No, what am I saying? I would not have been sent to the endo doctor or had the tests had I not refused to take the drugs. What a world.
- By cm81256
- Posted September 14, 2009 at 6:57 pm
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Betty,
Hi thanks for the post. I have read so much since Millie123 pointed me in the right direction and I quit making myself crazy over all this. I read more an more things. I also read that even if your PTH level is normal and your Vit D is normal (which my Vit D is 51) and my PTH is like 48.1 witch is in the normal to higher range it is still parathyroidism. there should be no reason what so ever that your calcium level to be elevated. Both my calcium in the blood and ionized calcium levels are high. Not terrible high but it doesn't matter after doing all the research there should be NO calcium in the blood. What did the Endo say about you? I called today to schedule the follow up and my doc will be out till Oct. 1 so I have another appt then and I will find out about the few other tests I did. I wish someone who had this surgery will post if it helped with their osteo. The research said the bones will start getting better immediately but of course bones take a while to get better. But one can only hope. I am armed with a million questions thanks to the article and I know when to run if his answers are not what I read about minimally invasive surgery that should last 25 minutes tops.
- By millie123
- Posted September 15, 2009 at 8:48 am
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Calcium could be elevated for several reasons, including such things as not having enough D or magnesium. Keep reading. You'll stumble on hundreds of things to stimulate your interest.
- By cm81256
- Posted September 15, 2009 at 8:31 pm
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hi millie, Seriously your calcium can be elevated for not having enought Vit D or magnesium. I had no idea. I just joined this site a few months ago and stumbled upon it quite by accident. I have learned so much and heard from so many nice people like you. Everyone trying to help everyone out since we are all in the same boat so to speak. Take care.
- By millie123
- Posted September 16, 2009 at 9:26 am
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Hey, we're all out here rooting for you!
- By dudemom
- Posted September 16, 2009 at 2:46 pm
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cm81256, I have been in the same boat as you, I am 48 Have recently had elevated PTH 75 the frirst time 90 the next. Wondering about the torn labrum, do you know how you did it. I have two in both of my hips and have no idea how I did it, so much pain. haven't had any surgeries yet. Could the parathyroid disease have any bearing on the torn labrums ?
- By Joyce-Marie
- Posted September 17, 2009 at 8:52 am
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Hi,
I had a parathyroidectomy in 2003 and two years later had a huge improvement in bone density (around 15%). I don't remember the surgery being painful afterward. I moved out of state a couple days later and it did not affect my level of activity. The scar is barely visible. I spent one night in the hospital. My bone density is going down again, six years later, and I am seeing an endocrinologist about possible causes, including the possibility that my parathyroid may be out of balance again. I do lab tests next week.
- By dudemom
- Posted September 17, 2009 at 5:05 pm
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does any know of a connection with hyper-parathyroidism and joint and bone disease, I have 2 torn hip labrums. As I said on the previous post ,Have NO idea how I tore them, I am not an athlete, like to walk thats about it, I t just seems weird,cm81256 said she had a torn labrum in her shoulder, that made me think! Anyone w, similar problems. thanks
- By millie123
- Posted September 18, 2009 at 8:51 am
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Joyce-Marie: Please do a post describing your surgery so that this topic stays out there up front. Also let us all know what the endo doc says after your appointment.
- By 2lessparathyroids
- Posted September 18, 2009 at 2:24 pm
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cm
I had a parathyroidectomy in Nov. 2008. All the endos where I live insisted I didn't have an adenoma because my serum calcium was only ever high normal,10.2. My PTH was only slightly elevated. To make a long story short, I was visiting family in Australia, fell and broke my ankle. Surgeon there said I had osteoporosis. When I got back to the US, I went to my sisters ENT who did more blood work and a bone density. I had a sestamibi scan done that was negative meaning they didn't see a parathyroid tumor. My ENT decided to do surgery anyway because all my symptoms indicated hyperparathyroidism. He found an adenoma and removed it. My original plan was to go to Florida once returning from Australia but since I broke my ankle I couldn't go there because I couldn't get around on my own. Would have liked to have the minimally invasive surgery. As it was I have about a 2 inch scar. The site of the incision was sore but not bad. Did have a stiff neck for a few days. They forgot to tell me to take calcium supplements right after surgery till the other parathyroids kick back in doing their job. That caused some other problems when my calcium dropped too low.
Now I am having problems again after feeling good for a few months. Think I have another adenoma that was missed the first time. Once again, all the endos where I live think I am crazy because my calcium and PTH are not real high just like the first time. They keep saying it is vitamin D deficiency but I have all the old symptoms back, high blood pressure( mine was always low before), palpitations, muscle weakness, bone pain, frequent urination, can't sleep, anxiety, thinning hair. I basically just feel lousy. My osteo is probably getting worse again too. Haven't had another bone density though.
Sorry to be long winded but I hope you keep looking into the whole parathyroid thing. Many endos just try to pass it off as other things because they don't see enough of it. You will feel so much better if you get the adenoma removed. Just be sure your surgeon is a good one and does mini operation. As for me , I am hoping to see the guy in Florida soon.
- By millie123
- Posted September 18, 2009 at 5:27 pm
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Wow. Good post. We need to keep clicking on this one to keep it active.
- By cm81256
- Posted September 18, 2009 at 9:20 pm
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2lessparathyroids,
You are not long winded at all I read every word twice. I have been trying to read up on this surgery as much as possible. To be ready when my endo comes back into town and I see him again to go over my results. Some of the blood results were sent to me with his letter sent to my Gyno who recommended me since my bone scores were getting worse and worse etc.
The research I read was that even if your blood level is elevated very little it is parathyrodism. Even if your PTH hormone levels is within normal range if there is any excess in the blood you still have pathyrodism.
My PTH is not that high it is on the higher normal range but I do have excess calcium in my blood not extremely high but higher that what is considered normal. I also will find out the results on the 24 hr urine test to see if there is calcium being lost there .
I will find that out Oct.1. I also read that a negative scan which you mentioned does not mean you do not have it. It only means that whomever did the scan did not do it correctly. This is not me talking this is what I read obviously it is correct since this is exactly what had happened to you.
I am so glad you took the time to post because I am reading what happened to you is exactly what the site said. I am happy you did get some relief but now here again you think you have another adenoma and since you have been thru this once you should know. We know our bodies better than any endo. I would definetely continue to get to the bottom of your problem you sound as if you are having terrible symtoms. I do not have any of those symtoms really just my osteo is terrible for no apparent reason and no medications for the last 6 years have slowed it down. He did say he will repeat all the test which I am glad because I am scared of all the what ifs. Thanks so much for posting your info. It has definetly support alot of the info I have read. I think my endo is a good one but I will know more on my second visit and with further testing. Take care and thanks again
- By cm81256
- Posted September 18, 2009 at 9:24 pm
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hi. I did ask my orthopedic doctor several times if my torn labrum had anything to do with my osteo and he said NO. He is a very good orthopedic so I waited and asked him the same question again like a month later and he said no again. So to answer your question I don't think your labrum has anything to do with it but hey I could be wrong. Just posting what my doc told me.
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