Parathyroid? Bone/Joint Pain/ High Calcium Blood Level
Hi Friends: (Sorry for lengthy post)
I recently got blood work results back. And some of my numbers are higher than normal.
My Alk Phos numbers seem to keep going up. Starting in 2017 at my cancer dx timeframe my number was 70 then May of 2020 78 then sept 2020 jumped to 92 then Jan 2021 102. Feb 2021 114 and April 2021 110. It's gone up quite a bit
I had my alk phos isoenzymes tested too. That test is supposed to show where the elevated alk phos is coming from. It showed it's coming from my BONES not from liver. Liver alk phos is normal
So I'm a little concerned. I've been having joint/bone pain for awhile now.
I am NOT ON a AI inhibitor, haven't had rads or chemo and no tamoxifen so I know the pain isn't from meds or anything like that
My blood CALCIUM has jumped from the 9s to now 10.2. So I don't know if that's concerning??
It's interesting that I have OSTEOPENIA and my calcium blood level is high. Strange.
My PARATHYROID test showed a level of 22 I think in normal level. But my Calcium was high at 10 again.
Just sharing because I'm concerned. Maybe this is nothing to be concerned about. I've never had my bones checked other than a dexascan.
But I'm wondering what type of scans I should ask for?
Should I have bone scan AND parathyroid scan?
I've read some of the parathyroid threads and wonder if I have issues?
Thank you in advance for your thoughts!
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Is it high or higher in the normal calcium range? Only asking because the lab we use for our patients allows up to 10.2 as normal. Fluctuations within the range are pretty typical, at least with the patients I work with.
Did the doctor who ordered your labs give any insight into your numbers?
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JonsGirl, sorry you are experiencing problems. If you've read the high blood calcium and parathyroid threads, you have seen what others have experienced. Your high level of blood calcium is too high and you say "again" so it must have been also high in the past. That is something you should not ignore, even if the parathyroid level is okay. All these tests can vary widely, even if there is a problem. Unfortunately, many doctors take the "wait and see" attitude, only allowing for further problems. The DEXA scan would tell you if the high blood calcium is leading to bone loss, and test for kidney function because of the high blood calcium. How do you feel? Remember, "stones, bones, groans, moans, with psychic overtones" meaning do you have kidney stones, bone loss, muscle aches, pain, or emotional anxiety/upset? All could be indicators of parathyroid problems. Find a parathyroid specialist, not just a general endocrinologist, if you can. They can order additional testing if necessary, although parathyroid testing is often flawed. All the best.
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gb2115: Thanks for posting. It is 10.2 but had been in the 9s. 9.1 in Jan of this year, feb it jumped to 9.7 and then in April it was 10.2. So it is going that direction which I find odd. I am not able to see my oncologist who ordered the tests until the 21st of May. So hoping to get a earlier appt as some of my other labs I am wanting to talk with her about too. But she is pretty busy!
ceanna: Thanks for posting. I said 'again' because my calcium was tested the same day in the PTH test for PTH and calcium in that one test and then also I had a metabolic panel that also tested calcium level. My metabolic panel calcium was 10.2 and my PTH testing for calcium was 10. My parathyroid was 22. (normal range goes up to 88) so that was normal. I am going to talk to my oncologist about this tho. Because my calcium is clearly elevated. And I am osteopenia.....I have had a bone density test and I am Osteopenia. Your right I should be testing kidney function too probably because of high calcium. But I am waiting for my oncologist to tell me what the next tests would be. I am trying to get a appt that is sooner than the 21st. My oncologist is also specialized in blood so she knows alot about blood stuff. She has been trying to help me figure out why I am having joint/bone pain. Will see what she says.
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JonsGirl, with osteopenia also, it seems your calcium is being drawn from bones into your blood. Parathyroid could be issue even with normal PTH levels (mine varied widely during all my testing). My blood calcium levels returned to normal during the parathyroid adenoma surgery and have remained so for almost 3 years since. My recent DEXA scan showed an improvement in my level of osteopenia, so the calcium is no longer being leached from my bones! It took years to finally get a doctor to pay attention to my high blood calcium levels, so don't worry if you have to wait a couple more weeks for your doctor's appointment.
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Maybe that's what's causing my osteopenia then. The calcium is coming from somewhere. I'm not taking calcium. Will see what my dr says.
Id be so glad if I don’t end up with osteoporosis like my mom.
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I thought I'd post a update and maybe others will post their experiences here too.
I'm having my vit d checked today to see if it's elevated (could cause calcium level to go up). If it hasn't gotten significantly worseI will be asking for a referral for evaluation by a local parathyroid clinic. My calcium is above 10 now. I’m assuming they would have some sort of scan to see what my thyroid and parathyroid look like
I'm having a dexascan today too to see if bone loss has gotten worse (higher alk Phos level).
Tami
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Jonsgirl, I am over 50, I have osteopenia, and have had elevated calcium (10.1 - 11.1) for the last year. My MO tested PTH two consecutive months, both were high. Referred to endocrinologist, who says it appears to be hyperparathyroidism. Ordered parathyroid scan, parathyroid u/s, and an all day urine test (looking for calcium there) - still awaiting scheduling for all. We anticipate surgery to correct; I'll be happy to save my bones and possibly regain some muscle strength.
Note: I have liver mets, so ALP, ALT, AST were all elevated until ALT/AST recently dropped to normal range when I reached NED. ALP is still slightly elevated. Vitamin D has been low for years; supplements help.
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Hi SeeQ:
Thanks for posting! I’m in my early 50s. My vit d level was high in Jan just cause I was taking a lot of it for awhile. But will see what my levels are now since lowering dose. personally I don’t think that’s what’s causing my high calcium level but my oncologist wants to rule that out first.
Thanks for sharing your experience with your parathyroid evaluation. I think I need to be evaluated too. I’m just above 10. But not in 9s as of last bloodwork. So thought that’s probably worth checking if vit d level isn’t high.
My alk Phos was 70 when I had initial cancer dx in 2017. It’s continued to rise and is now 110. I have joint/bone pain all the time pretty much now. So I’m pushing to figure out what’s going on. Have been tested by rheumatologist and it’s not RA. Dexascan today to rule out osteoporosis or worsening osteopenia. But if I have issue with parathyroid could just be that causing this.
I’m anxious for answers. I have pain especially with sleeping at night.
Thank you for sharing your experience. Tami
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update from tests yesterday:
My vit d test results are good. And dexascan results show some significant change in my lumbar but nothing much other than that I don't think from what I read. So I don't think my pain is from either of those. My lumbar back isn’t really bothering me
I will be asking for parathyroid eval and bone scan if she thinks we need to do that.
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JonsGirl, glad your D level is good (hope the results were in the 50-80 range which is optimal) and hope you don't have problems with lumbar. Keep plugging away at getting answers to your high calcium level. Results at 10 or above are definitely not normal but too many doctors take a "wait and see" attitude which can just lead to bigger problems! Keep us posted! All the best!
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I too have an elevated calcium, from 9.8 to 10.4. It started last year. My PTH was 29 in August 2020. My doctor told me to stop the calcium supplements but my calcium is still high. My onco will refer me to Endocrinologist. My primary is not worried because my PTH is normal. It bothers me more because I’m not sure what is causing it
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Anx789, glad you are getting a referral to an endocrinologist. My PTH was normal at times also, but varied widely as the years progressed while the doctor's were taking a "wait and see" attitude! I had lots of tests which were inconclusive--scans, sestabimi scan, and others. Finally found a parathyroid specialist who found parathyroid adenoma, and literally the minute the problem para was removed, my calcium returned to normal (during surgery) and has remained normal for the past almost 3 years. A recent DEXA scan even showed an improvement in osteopenia, so parathyroid hormone no longer draining calcium from my bones. I do not take calcium, and most supplemental calcium is not absorbed properly so a waste to take unless you balance calcium, magnesium, and Vit. D and K. Don't let too much time go by without answers! Hope you find the cause and, if adenoma, it's a relatively easy fix with the right doctor. All the best.
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Ceanna, thanks for your reply. I was searching google and now concerned about Hypercalcemia of malignancy specially that I have throat discomfort and my ENT thinks it’s allergy. Do you know other symptoms that goes with hypercalcemia malignancy? Like, the usual range of calcium level? How did the parathyroid dr diagnose your adenoma, what test did he do
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Anx, I don't know about hypercalcemia malignancy but understand it is rare! Google is often not our friend when looking up health issues. Don't let it take you to thoughts that are unnecessary!
Normal adult calcium level is in the 9s. Once it's over 10 or varying up and over, it's time to get that checked. Mine ranged from upper 9s to low 11s and was different each time they tested over the years I let them "watch and wait." While I don't believe all the information at their website and know they're not the only parathyroid specialists in the world, this site does offer a lot of information about symptoms, tests, surgeries, etc. https://www.parathyroid.com/ Please use info with caution to talk to your doctor.
Again, they are not the only answer, but it will help you when you visit your endocrinologist and can ask questions. By the time I found a parathyroid specialist (also the surgeon who took out my adenoma) I had had inclusive scans. He looked at all my abnormal calcium and some abnormal PTH level results, my growing osteopenia, and mild kidney test abnormalities, and he then personally did a very lengthy ultrasound. This does not usually show much, but years earlier both sides of my thyroid was removed so the ultrasound could detect an adenoma, even though the sestamibi test did not show. The paras are behind your thyroid, so really hard to diagnose adenomas.
Lots of nerves and muscles involved in your neck, so could be the cause of your throat issues. Also, the reason to get a referral from your endocrinologist to a specialist to confirm if adenoma is the problem and who is an experienced surgeon in the throat area. Current para surgery is out-patient and minimal for discomfort if you should need surgery, and if they suggest otherwise, you should find another surgeon!
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Ceanna, is the parathyroid specialist is an Endocrinologist or ENT? since my PTH is only 29 which is on the low normal, it’s very unlikely it’s parathyroid, my primary should have done more testing if what causing my hypercalcemia or more follow up.
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Hi Anx and Ceanna:
Thank you for telling us about your PTH level being normal sometimes. I am meeting soon for a phone visit with my onco. My pth is normal too but my calcium is above normal in the pth test with the calcium. My other calcium test was on the line at 10.2. But had jumped from the 9's. So I plan to ask her for a consult with a endo para/thyroid speciality clinic dr as I found a couple she could refer to. Will see what she says. I am going to push for consult tho. My bones/joints have been hurting me quite a bit. Not sleeping well at night. And some of my other bloodwork has been off. My dexa showed worsening osteopenia in my lumbar not tons worse other places they scan. But I am still osteopenia at 53! So I am pushing today for a consult. Want to rule out my parathyroid first. But will see she may want me to have a bone scan too. Not sure.
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Endocrinologist....but should have experience with parathyroid in my opinion. Not sure all endo drs have that experience. My parathyroid was I think 25? But you can be in normal range and have high calcium and from what I understand it can be bad parathyroid....so I would have consult for that just to rule out that.
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Jons, we have similar test results, based on what I'm reading, slightly elevated calcium with a normal low PTH is unlikely a parathyroid but ifthe PTH is on the high normal end then it's likely a parathyroid. If it's not due to parathyroid, the second reason might be malignancy but for malignancy calcium is around 12 and PTH is low. since ours is just slightly elevated, should we be worried? Could you please share your onco'sopinion. My primary and onco is down playing this since last year.
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Hi Anx: I thought I had read that the pth number doesn't always matter. If you have high calcium it can just be that you have issues with parathyroid. Even if the pth isn't high. Or I think that is what I read.
I got a referral today to the parathyroid center just for a eval. Not going to hurt to have that ruled out.
I don't know if we should be worried about malignancy. I don't think we should be worried. My oncologist doesn't think I have bone mets/cancer. But because I chose no radiation treatment and I am not taking a hormone blocker, all I had was surgery, they are watching me with diagnostics. It was the right decision for my treatment. But because of that, she said it wouldn't be a bad idea to do a CT of my organs and bone scan. So we plan to do that after seeing if my parathyroid is having issues.
I am also having ongoing joint/bone pain and I am not on a hormone blocker. I am not taking calcium so my calcium level is on high end for me not to be taking calcium. My Alk Phos is elevated and had the isoenzyme test and the extra alk phos is coming from my bones so we are trying to figure that out. The parathyroid could possibly be causing this maybe so I am getting a evaluation for that next. My oncologist is actually more concerned about my alk phos level.
My oncologist doesn't think this is bone mets/cancer. But she wants to rule out everything. If you are having other symptoms and your calicum level has been continuing to go up....if I were you I would get a second opinion.... I am always having to advocate for myself it seems like. But overall I have good doctors who usually listen to me. You have to decide to do what is best for your care. This is just my thoughts above on what I would do if I were you. Sorry you are going through this.
What were your calcium levels like 5 yrs ago? What I do is chart out sort of what my numbers were and keep a watch on them if they are continuing to go up then you know that.
Sorry for writing a book. lol
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Anx and Jons, I'm hopeful you both will find answers--it just takes persistence with the doctors who tend to want to wait and see. I know my endo stated that PTH levels can vary widely from test result to the next and my levels were measured for years before I had surgery for adenoma. I was sometimes in normal range also, but don't remember ever being low. Not sure what the "normal" PTH range is anymore.
I'm not sure what my surgeon's type was, other than he specialized in paras and other neck issues--I was connected through my endo. If you have para problems, you don't want a general or inexperienced surgeon due to the unique location of the paras and the nerves and blood vessels in the neck.
Try to look for an endocrinologist who specializes in thyroid and parathyroids, not just in diabetes. I had to go to a couple of different endos before I found one who knew about parathyroids--most seem to deal only with diabetes. All the best. Please let us know what the docs say!
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Ceanna: Did you have joint/bone pain before your parathyroid surgery? Did the pain go away after surgery? Thank you for the info you shared about your experience. We have a parathyroid/Thyroid center here where I live so I am going there and am being referred to endo dr who has experience with parathyroid...
12-88 is normal parameters of PTH. Mine was 22. I just looked at the sheet of results.
will let you guys know what the endo doctor says at my appt. I am waiting for the referral to go through and then for them to review my records and then to schedule the appt. lol.
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Anx789, I had a similar experience with calcium levels jumping high at this time last year and I developed a 1.6cm thyroid lump. So strange! The biopsy showed a benign thyroid lump and I need to check it every year. MO told me high calcium over 10 was OK too. I was worried at that time but it seems to fluctuate from 9.8-10.5 during the year.
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Lilyishere: did they do any diagnostics before your biopsy that saw the thyroid nodule
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Jons_girl, I was washing my face and neck and one day I felt a lump. It seemed that was created overnight. I ignored it but it became visible in my skinny neck. I asked my MO to have a scan and he ordered US where they could see a 1.6cm lump. It was described as 1.6 x 1.0 x 1.5 cm nodule in the mid right thyroid lobe which appears spongiform and mildly hypoechoic with slightly ill-defined margins, and no definite associated echogenic foci. Internal vascularity is demonstrated on color Doppler interrogation.
Because of the pandemic, I had a zoom visit with an endocrinologist I found through my friend since it was a mess and so difficult to contact doctors last year at this time. Then she suggested a biopsy and I was able to get it in a very short time. Probably I was the only patient in the hospital at that time. Biopsy showed benignly but I have to check it yearly with US and doctor visit. It was the same time when blood calcium levels went high.
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Thank you all for the replies. The more info the better.
Ceanna, the reason I'm asking is because in my ENT doctor office, they have an Endocrine surgeon, is that the same as a parathyroid surgeon? I'm going to find out, I'm seeing my ENT in two weeks. Normal range for PTH is 15-65, different labs might vary.
Jon: if you're having joint/bone pain, shouldn't you also consult a Rheumatologist? You might have arthritis problems. My blood works looks good except for the calcium. My calcium has been on the 9s until last year.
Lilly, is your calcium normal now? I have this weird sensation on my throat, seems dry on right side. My ENT thinks it's allergies, or due to my deviated septum,prescribed allergy med but it's not getting better. I'm thinking this might be connected to my hypercalcemia.
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You all have such great information! I just want to add a couple things.
1. Your lab results should specify the normal range for the test they use. As I understand it, this range can vary with different lab test kits/processes. For exsample, my lab results show 14-64 is normal, and both my results were above that (but under the 88 cap mentioned above).
2. The parathyroid.com site definitely has a lot of information, and the tone is a little...different. I found another site you may find interesting:
Center for Advanced Parathyroid Surgery
It's always good to have more than one resource.
My endo ordered Sestamibi scan and ultrasound to confirm next step is surgery.
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Good discussion going here!! Thanks for all joining in. JonsGirl, glad you have access to a para/thyroid center and can get an appointment. I've had pain for decades from chronic fatigue and gout, so, no, the pain did not change for the better after surgery, but my bone density did, and my calcium and PTH levels have remained normal since surgery.
LillyWasHere, I hope your situation remains manageable and unique with having to have diagnosis during the pandemic! All the best for those yearly checks.
Anx, I'm not sure there is a specific certification of parathyroid specialists. I think it's more what they've focused on and have the most experience with. You just probably don't want to go to a general surgeon who does one or two paras a year, but instead go to one who does similar surgery many times a month! You may just have to ask how much experience their endo surgeon has with parathyroids. I just know mine had lots of experience and I felt comfortable with his skills since the neck has lots of nerves and circulation. My concern for experience is based on the fact that over a decade ago, I had my thyroid removed by an ENT and have been left with a small problem with functional vocal cord since
SeeQ, thanks for the additional website for para info. I've always found the site I linked to be a little self-serving for their practice, and have always cautioned anyone using it, but does give a perspective into the problem. Your site offers good info. Thanks. Am I reading it correctly, that you need to have parathyroid surgery, or have you had it, or are you still testing?
Whew! Did that answer all the questions? If not, ask away, and I'll check back tomorrow.
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ceanna, both websites offer great information, so I have used both. The one reminds me of a used car salesman, which can be a little off-putting, I think. I searched for the second one to bounce the first one's info against.
I've only seen my endo once, so far. His diagnosis was hyperparathyroidism. He reviewed my bloodwork for the last year, and we talked about my osteopenia. He ordered the scans as confirmation, and in preparation for surgery. He said he was going to order another test to check calcium in the urine over the course of a day, but I haven't seen that, yet. He was surprised I haven't had kidney stones. I expect to know the way forward next month.
I live in a relatively small community for medical care, so there aren't a lot of options in town, but there are some and he is well-regarded. I can travel, if necessary, so I may consider a second opinion, depending on his experience.
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Ceanna, did you have high calcium before or after your BC? I’m curious if Anastrozole has something to do with my hypercalcemia
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You can ask your doctor to get a "regular" blood calcium test and also at the same time, draw a second tube for an ionized blood calcium test. The "regular" test just measures the total amount of calcium in your blood, but there are actually 2 types that include the type that is actually usable, and the other type that is not usable, and the ionized calcium test specifically measures only the usable kind.
The ionized calcium test is kind of special so your doctor might need to ask the lab to add it to their menu of tests in order to be able to order it for you. The blood sample taken for the ionized test needs special handling in that the tube CANNOT be opened, because if the blood is exposed to the air, the pH of the blood changes and will result in inaccurate results. Make sure the lab people know to NOT open the tube, otherwise you'll need to give a second sample. Some lab centrifuges automatically open the tube while spinning in order to analyze the blood, so make sure the lab uses a centrifuge that only spins but doesn't analyze, otherwise your tube of blood for the ionized calcium test might unknowingly get opened inside the centrifuge and the lab will just tell you you need to do it again.
Anyways, the whole point of doing both the "regular" and the ionized blood calcium tests on blood drawn at the same time is to see if the total amount of blood calcium shown in the "regular" test is high due to more active calcium shown by the ionized test (this would be concerning), or if the total is high due to more inactive calcium. The total calcium can be high if your albumin is high, because the albumin binds with the inactive calcium, so you could also check that as well.
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