Topic: Parathyroid? Bone/Joint Pain/ High Calcium Blood Level

Forum: Bone Health and Bone Loss — Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: May 2, 2021 06:33AM - edited May 2, 2021 06:37AM by jons_girl

Posted on: May 2, 2021 06:33AM - edited May 2, 2021 06:37AM by jons_girl

jons_girl wrote:

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!

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
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May 2, 2021 09:42AM gb2115 wrote:

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?

First Dx IDC in 10/16 at age 38, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Lumpectomy + radiation + tamoxifen. Second Dx IDC recurrence in original location 5/21. 1.3 cm ER/PR+, Her2 -. Grade 2. 2/2 nodes. UMX + AC/T + Zoladex/Exemestane + Zometa.
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May 2, 2021 09:49AM ceanna wrote:

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.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Internal catheter Surgery Lumpectomy; Lumpectomy (Right)
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May 2, 2021 07:44PM jons_girl wrote:

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.

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
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May 2, 2021 09:27PM ceanna wrote:

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.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Internal catheter Surgery Lumpectomy; Lumpectomy (Right)
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May 2, 2021 10:17PM - edited May 2, 2021 10:18PM by jons_girl

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.

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
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May 6, 2021 06:29AM - edited May 6, 2021 06:31AM by jons_girl

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

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
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May 6, 2021 06:58AM seeq wrote:

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.



De novo diagnosis with large/numerous liver mets. Breast lump identified one month later. Hormonal Therapy 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio
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May 6, 2021 07:12AM jons_girl wrote:

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

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
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May 7, 2021 06:34AM jons_girl wrote:

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.

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
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May 7, 2021 09:29AM ceanna wrote:

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!

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Internal catheter Surgery Lumpectomy; Lumpectomy (Right)

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