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 02:33PM - edited May 2, 2021 02:37PM by jons_girl

Posted on: May 2, 2021 02:33PM - edited May 2, 2021 02:37PM 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 11, 2021 06:45AM anx789 wrote:

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

Dx 9/25/2018, IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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May 11, 2021 04:23PM ceanna wrote:

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.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Internal catheter Surgery Lumpectomy; Lumpectomy (Right)
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May 11, 2021 05:11PM anx789 wrote:

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

Dx 9/25/2018, IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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May 11, 2021 06:03PM ceanna wrote:

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!

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Internal catheter Surgery Lumpectomy; Lumpectomy (Right)
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May 11, 2021 06:25PM anx789 wrote:

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.

Dx 9/25/2018, IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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May 11, 2021 06:27PM jons_girl wrote:

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.


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 11, 2021 06:29PM jons_girl wrote:

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.

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 11, 2021 08:57PM - edited May 11, 2021 08:59PM by anx789

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.

Dx 9/25/2018, IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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May 12, 2021 12:02AM - edited May 12, 2021 02:05AM by jons_girl

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

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 12, 2021 12:19AM ceanna wrote:

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!

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

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