hyperparathyroid surgery and osteoporosis

i have osteoporosis and after takng fosamax for a year my endo told me it wa not working, my bone density is pretty bad. -3.7 hip and -2.8 spine. Over the past two years my calcium had been roughly 10.1-10.4. My PTH is usually low/mid 60's or high 50's. Finally I told my endo that I had to be tested for hyperparathyroidism. I had the scan this week and one adenoma lit up. Now I need go for an ultrasound. My bones hurt me all the time. My doctor also took an xray of my hip and femurs. Turns out both my femurs show the beginning of stress fractures which my endo said could have been caused by the fosamax. I am going to have parathyroid surgery, but not sure where. I live in MA and want to have it done here and am loking for a surgeon. My endo is at Brigham and Women's and said the surgeons there were excellent. When I mentioned Dr. Norman, she rolled her eyes and said to stay in Boston. Does anyone know top notch specialists for parathyroid surgery in Boston? I have heard good things about Dr. Udelsman at Yale but not about anyone in Boston. From what I have read, it is important to have a surgeon who has done many of these surgeries, and who specializes in PTH surgery. If anyone knows of any docs in Boston, please let me know. I want to have minimally invasive surgery but really want all the glands looked at so I don't run the risk of having to have it done a second time. Look like a lot of the docs don't look at all the glands but rather just take the one they know is overproducing/ Also, do your bones start to get better after surgery? My problem is high Calicium rather than high high PTH levels and yes my Vit D levels are low and I take D2 (green cap ) once a month

By osteobelle (Inactive)
Reply 2795740
January 29, 2012 at 8:27 am
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You know, I am not an expert, but this is irritating. How did it happen that they didn't check your parathyroid, if you had your PTH in the sixties and calcium above 10. In my lab (Columbia-Presbyterian), the normal calcium range ends at 9.8 and, if I remember it correctly (to lazy to check), PTH ends at 60.

By 2lessparathyroids
Reply 2795795
January 29, 2012 at 8:57 am
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Different labs use different ranges. Also, many doctors look at high normal and slightly elevated numbers and tell their patients that you only need to watch the numbers to see if they go up because those numbers aren't high enough to indicate an adenoma. Believe me. I know all about it from first hand experience twice!

By osteobelle (Inactive)
Reply 2795816 · In reply to 2795795 by 2lessparathyroids
January 29, 2012 at 9:09 am
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Yes, but with serious osteoporosis and very "suspicious" calcium and PTH (whatever the range) I would expect doctors to start with checking parathyroid glands.
2less, you were totally right in your first reply to this comment (in a different thread), while I tried to be diplomatic. Now, I reread more carefully the post and realized that mazalex had already suspicious calcium and PTH when she was prescribed Fosamax ... without checking glands ...
BTW, why is she taking D2 instead of D3?
What's going on? Are people in Boston to preoccupied with Red Socks?

By maxalex
Reply 2795889 · In reply to 2795816 by osteobelle
January 29, 2012 at 10:01 am
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thank you for all the comments. I am actually going to Brigham and Womens' to a highly rated Endocinologist who went to Harvard Med and worked at Columbia Med Center in NY for years. .. Sort of scary to me that I had to push for the tests. I am concerned because my bones are bad. I have developed opteoarthritis in my neck and lumbar area wioth pinched nerves in my arms from my neck and pinched nerves in L4/L5 region. Add to that rib cage, back , shoulder pain and now hip pain with possible femur fractures beginning, I am scared that I won't ever be able to do weight bearing exercise and get better bones.. I am praying the surgery will help me. I agree, I am not too happy with the endo waiting all this time but I also was tested while at the Mayo Clinic for GI 3 years ago and not only was my Ca high, I was spilling Ca in my urine and had high PTH and Vit D (they thought it was the vit causing the high Ca). Even my primary care doc did not seem concerned. My advice is to be your own advocate and do research. I take Liquid Ca/Mg.Vit d 600, 300, 400 daily on top of the Vit D2 . The Mayo recommended D3 but all my docs in MA said D2. I am willing to switch to D3 but not sure how much to take. Lastly, any names of experienced doc for the surgery in Boston??. BWH is supposed to be rated number 1 in endocrinology according to USNEWSREPORTS but not in this type of surgery.

By 2lessparathyroids
Reply 2796015
January 29, 2012 at 10:54 am
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Taking vitamin D in any form is not a good idea if you have an adenoma. I know that most of the endos I've seen have always tried to blame all my problems on low D. I actually tried taking it and nothing changed and I even felt worse. That was prescribed for me at Johns Hopkins where the endo said I didn't have another adenoma and my problems were due to low D. Even well respected hospital can be wrong especially when it comes to parathyroid disease.
Regarding your question if osteo actually will improve after surgery the answer is yes. My one sister had an adeno
A removed around the same time as my first surgery. Two years later and her osteo is gone. She didn't take any osteo drugs either. I on the other hand have seen my osteo get much worse and that along with all my other sympto
S tell me I must have a second adenoma that was missed in first surgey.

By royslady
Reply 2797989
January 30, 2012 at 8:54 am
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You might want to check out Beth Israel Deaconess Med Ctr in Boston. I have Graves Disease and am under the care of the Chief of Endocrinolgy, Metabolism and Bone Density there. When I also developed Primary Hyperparathyroidism he referred me to the Chief of Endocrine Surgery there....Per Olaf Hasselgren. After extensive and thorough testing had an 8mm ademona removed, along with the affected parathyroid gland last spring. No, it was not minimally invasive - I have about a 3" scar - but it has faded away to pratically nothing - you can barely see it anymore. The surgery went 2.5 hours, as he is very, very thorough and careful, especially as it can cause damage to the vocal cords if not done properly. Went home the same day - didn't even need pain meds. The med staff and all involved were terrific - professional and very reassuring. Within minutes of removing the tumour my blood calcium went from 10.8 down to 8.5 and is now staying at 9 which is just right. The guy is an expert and specializes in this form of surgery. I cannot say enough about the excellence of the care. Top-notch endo dept there! Also...BID Boston has a Bone Density Clinic where you can get further needed support.
My blood calcium levels have been high since at least 2008 when a Dexa showed a T-score of -2.5. In the 2 years it took to treat the Graves I lost another 17% which is considered normal under those circumstances. Latest Dexa now shows a T-score of -4.99 which they expect to improve now that both the above conditions are under control. My experience there was very positive - they know what they're doing there! As my endo keeps saying - "everything is remedial!" Doing supplements and lots of PT now and feeling great!

By PixelPixie
Reply 2803535
February 1, 2012 at 9:47 am
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Hi,
Regarding your comment...
"...not only was my Ca high, I was spilling Ca in my urine and had high PTH and Vit D (they thought it was the vit causing the high Ca). Even my primary care doc did not seem concerned. My advice is to be your own advocate and do research. I take Liquid Ca/Mg.Vit d 600, 300, 400 daily on top of the Vit D2 . The Mayo recommended D3 but all my docs in MA said D2. I am willing to switch to D3 but not sure how much to take."

About a year ago tests showed I was spilling Ca in my urine - a 24-hr urine showed very high levels. I was put on Maxzide 25, a thiazide diuretic. This year the 24-hr urine still showed high levels (higher still) so the dose was upped to 1-1/2 tablets a day. Maybe there's a reason your doc hasn't prescribed Maxzide (Triamterine) in your situation?
Also, I take D3 in AM and PM -- 1,000 IU ea.

I hope that is some help to you.

By Jamie03
Reply 2936667
March 25, 2012 at 7:50 am
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I have had two parathyroids removed and the one thing I can tell you is to be sure you find a doctor who specializes in this kind of surgery. I was so glad I did. You will feel like a new person after it is all over. Good luck.

By maxalex
Reply 2936786
March 25, 2012 at 9:05 am
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I decided to try one more surgeon... at Yale. If he says no, then I will need to find a new endo to figure it out. right now i am only taking Ca, Mg/Vit D liquid with an extra 1000 U Vit D3. I neEd a wisdom tooth pulled on Monday and really fear osteonecrosis of the jaw given my bones in my mouth have resorbed a bit according to my dentist and I took Fosamax for a year (did nothing) and am only off of it for 6 months(Heard it stays in your body for 10 years~~~~)

ANY RECOMMENDATIONS FOR A GOOD OSTEO ENDOCRINOLOGIST IN WORCESER MA AREA OR EVEN BOSTON. I THOUGHT BW WAS SUPPOSED TO BE THE BEST, BUT NOT SO SURE AFTER ALL OF THIS..

By 2lessparathyroids
Reply 2937094
March 25, 2012 at 11:26 am
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Maxalex, I don't understand why your docs are having you take any of those supplements. If you have an adenoma they won't help and can be dangerous. Only thing that will help is getting that adenoma out.
As a note to my suspected second adenoma, I had a second surgery in February and they found that my first surgeon did not remove the whole adenoma and it grew attaching to my thyroid. I could hardly believe it when the ultrasound I had done prior to second surgery only indicated something showing where first adenoma removed.

If we have adenomas and many symptoms and suspicious blood work , then how can docs deny us the only treatment that will help and prescribe drugs that will not help and can cause serious problems. Surgery is the only real solution for those with hyperparathyroidism. Don't let them put you off and tell you otherwise. This really is a sore subject with me.

By smarter1
Reply 2939440 · In reply to 2936786 by maxalex
March 26, 2012 at 12:00 pm
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Dear maxalex,
You say that "right now i am only taking Ca, Mg/Vit D liquid with an extra 1000 U Vit D3." I urge you to stop all supplements. You are going to perhaps go into kidney failure if you don't. I don't want to scare you but it can happen. Hyperparathryoid disease causes the calcium to leach out from you bones and into your bloodstream and deposit into tissues. It affects not only your bones, but also the muscles, brain, bladder, kidney, stomach, intestines.....etc.etc. This is what causes the moans and groans of the disease. The calcium leaching from the bones causes terrible pain. But the calcium deposits in all our other organs do a lot of dammage too. In the brain; terrible headaches, memory loss and mood changes. In the intestines; terrible constipation. In the kidneys; kidney stones and worse and, in the jaw; tooth and jaw pain. I hope you are getting the picture here because what you are doing by giving yourself all those supplements, is adding to your pain. You are putting more calcium into your blood not your bones, and the D and Mag are trying to make this stuff stick around in your blood. As long as you have the adenoma, the calcium WILL NOT BE asorbed into your bones. I had a very large adenoma removed and once it was discovered, I was told to stay strictly away from the calcium and D. I had 13 out of the 16 major symptoms. I was spared kiddney stones, kidney failure and coma (death). You should be drinking as much water as possible every day until surgery. This helps by attempting to flush out some excess calcium from the kidneys. Get yourself a new endo and a surgeon soon.

And I agree with 2lessparathyroids, very frustrating that the surgeons do not check the other parathryoids when they are in there. My calcium took over 4 months to slowly come down nicely in normal ranges. This is highly unusual and the surgeon was hinting at doing a second exploratory surgery if if had not come down by month 7. Lucky for me, it did come down. I also got breast cancer by the way too which I understand that there can be a link between hyperparathryoid disease. Again, the surgeon said it is hard to know if that what caused it, but they didn't deny it either. Hope you get your surgery sooner than later. All of us who have been there know how sick you are feeling right now.

By maxalex
Reply 2939625
March 26, 2012 at 1:14 pm
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may I ask a few questions. the last two times they took my Ca it was 9.9 (range to 10. 5). Only one of the surgeons took my PTH which was 44.9 (range to 63). They say I msy have a small adenoma or maybe it is just a lymph node but don't believe it is hyperparathyroidism. My endo thinks I do, but very mild, thus flucuations over the last two years. I am going to go to Yale,Dr.Udelsman midApril who I hope will take the small adenoma out. The other two surgeons said since my levels ( the time they each saw me ) were normal, they wanted me to come back in a year after more CA/PTH levels are taken. My endo says take prolia (which I refused)..I am at a real loss. two surgeons won't operate, an endo who wants to give me a new drug because fosamax did not work and i am hoping that the surgeon at Yale will tell me what to do. Is it normal to have such flucuatations from 10.5 to 9.9 and PTH from 76, 63., to 44.9??

What do I do if the surgeon at Yale says no surgery.

By 2lessparathyroids
Reply 2939966
March 26, 2012 at 3:33 pm
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Yes, your calcium and PTH can fluctuate in and out of normal. I know because this is what mine did. In fact, mine was normal in July after having others before that which were elevated. The highest I had was calcium 10.4 and PTH 115. In February I had an adenoma removed so that proves there was an adenoma in there back in July when I had the very normal blood work.
Another point I wanted to make is that there is no such thing as mild hyperparathyroid. You either have an adenoma or you don't and symptoms aren't reflected in the degree to which you have the disease. Those with lower calcium and PTH blood work can have some of the most symptoms. I had headaches, bone pain, anxiety, acid reflux, brain fog, muscle weakness, fatigue, high and irratic blood pressure, severe osteoporosis and a kidney stone. I also have elevated cholesterol which I have heard is associated with this disease also. So, you can see that you can have rather normal to high normal or slightly elevated numbers and still have many awful symptoms. Besides being told I didn't even have the disease by many specialist or had a mild form of the disease, I actually had an adenoma with all the symptoms. Nothing mild about what I went through.

By 2lessparathyroids
Reply 2940520
March 26, 2012 at 7:33 pm
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My second surgery was in Tampa and Dr. Politz did the surgery. I had an ultrasound by Dr. Lupo in Sarasota to locate the adenoma.

By Chrisly1
Reply 2941635
March 27, 2012 at 9:15 am
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So I am just getting into this conversation and have never been told about my PTH...Last week I did have an endocrinologist that tested me for EVERYTHING. I did get the results and my PTH was 98 (they show normal as 12-88 pg/mL)
My vitamin D was low 25.8 and calcium was 9.6...Ironicaly although I have been following this group for at least 7 years this is my first time getting the written results with numbers (I should be a better patient) Just turned in my 24 hr "collectio" which she says should hive us more info...Right now she is just having me take additional Vitamin D 3...2000 units instead of 1000. I continue on 1000 mg of calcium citrate daily. I am also on calcitriole but have been for the last 2 years..My levels are low most likely due to gastrectomy for cancer about 20 years ago. I do have some fractures from radiation in T6-T8. and have another DEXA scheduled Thursday..
Had one wrist fx 8 years ago then last month a hairline fx on the other wrist from a silly fall up the steps following carpal tunnel surgery.
this is the first time I heard about my parathyroid levels or that it impacts bone density...I am learning quite a bit from this site...Tank you!!

By susan66
Reply 2945691 · In reply to 2795889 by maxalex
March 28, 2012 at 5:09 pm
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Hi..I had Ca levels of 10.5 and PTH of 65, very severe osteoporosis -4.7 spine, hip -3.5. I also was referred to a endo doc by my family dr. and had a sestimibe scan that showed a adenoma on 1 parathyroid gland. My endo dr. referred me to a ear-nose-throat dr. who was the only one in the area that had done plenty of parathyroid removals. you might ask your endo dr. if he knows of any ENT dr's that are experienced at this type of surgery. good luck with it. The sooner you have it removed the better you'll feel and yes my Tscores did improve after 1 year from surgery...

By maxalex
Reply 2945791
March 28, 2012 at 5:46 pm
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i have been so dissapointed with the docs i have. ireally hope Dr. Udelsman's agrees to do the surgery. I have thought about going to Tampa but the cost 1800 before even going to have them review my information is not something I can afford right now,

By maxalex
Reply 2993794
April 16, 2012 at 9:13 pm
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hello all,

I saw Dr. Udlesman at Yale today. He said that my Ca and PTH were both high normal, which is not normal. Given my bone density is awful and my levels, he thinks I have mild hyperparathyoridismn and yes, I should have surgery. So, after going to two Surgeons in Boston, one was not sure and wanted me to see another endocrinologist, the other said I did not have hyperparathyorid, Dr. Udelsman is going to do minimally invasive surgery. My scan showed two small lesions (adenoma;s) on the lower right inferior to my thyroid. I have alot of bone pain and fatigue as well. Dr. Udelsman is highly regarded in this field and I am willing ot trust him. Still scared of the srugery, but going ahead. I do have a question. He mentioned a local cerivcal block and Sedation. Anyone have a cervical block done? Does it hurt? l

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