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 09:33AM - edited May 2, 2021 09:37AM by jons_girl

Posted on: May 2, 2021 09:33AM - edited May 2, 2021 09:37AM 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 11, 2021 09:03PM jons_girl wrote:

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.

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 09:32PM lillyishere wrote:

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.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Hormonal Therapy 7/31/2019 Aromasin (exemestane), Femara (letrozole) Surgery 9/1/2019 Lymph node removal (Left); Mastectomy (Left): Nipple Sparing; Mastectomy (Right): Nipple Sparing; Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Surgery 9/1/2019 Mastectomy (Left): Nipple Sparing; Mastectomy (Right): Nipple Sparing; Prophylactic mastectomy (Right) Surgery 9/19/2019 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 11/29/2019 Femara (letrozole) Hormonal Therapy 12/1/2019 Femara (letrozole), Aromasin (exemestane) Dx LCIS/ILC, Both breasts, 2/5 nodes, ER+/PR-, HER2-
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May 11, 2021 10:16PM jons_girl wrote:

Lilyishere: did they do any diagnostics before your biopsy that saw the thyroid nodule

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 11:21PM lillyishere wrote:

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.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Hormonal Therapy 7/31/2019 Aromasin (exemestane), Femara (letrozole) Surgery 9/1/2019 Lymph node removal (Left); Mastectomy (Left): Nipple Sparing; Mastectomy (Right): Nipple Sparing; Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Surgery 9/1/2019 Mastectomy (Left): Nipple Sparing; Mastectomy (Right): Nipple Sparing; Prophylactic mastectomy (Right) Surgery 9/19/2019 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 11/29/2019 Femara (letrozole) Hormonal Therapy 12/1/2019 Femara (letrozole), Aromasin (exemestane) Dx LCIS/ILC, Both breasts, 2/5 nodes, ER+/PR-, HER2-
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May 11, 2021 11:43PM - edited May 11, 2021 11:44PM by anx789

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.

Dx 9/25/2018, IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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May 12, 2021 12:15AM seeq wrote:

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.

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 12, 2021 01:18AM ceanna wrote:

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.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Internal catheter Surgery Lumpectomy; Lumpectomy (Right)
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May 12, 2021 09:44AM seeq wrote:

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.

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 14, 2021 01:31AM - edited May 14, 2021 01:34AM by anx789

Ceanna, did you have high calcium before or after your BC? I’m curious if Anastrozole has something to do with my hypercalcemia

Dx 9/25/2018, IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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May 14, 2021 01:57AM navy1305 wrote:

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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