Parathyroid disease and breast cancer
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Canuck, I'm sorry you aren't able to get medical help from the doctor you have. With a high PTH level and high calcium level, you may want to seek other opinions sooner rather than later. My PTH level fluctuated for years from high to normal and back again, and my calcium level never got real high (usually in low to mid 10s), but that's also a sign up hyperparathyroid problem. My endocrinologist always brushed it off until he retired and my new endo immediately said this was a problem and further testing proved an adenoma existed. Meanwhile I developed osteopenia, mild kidney problems, and who know what else it may have caused. I am now 6 months past removal of the problem parathyroid and my follow up blood levels for calcium and PTH remain normal. Two years after surgery, I am to have another DEXA scan to see if the osteopenia has stabilized or maybe even improved!! Please do yourself a favor and find an endocrinologist who knows parathyroids--they all don't or are old school and do not know the latest research about them.
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Bump
Please keep this thread going.
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absolutely
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Hello Canuck76,
It looks as though it is hard work keeping this thread going. The same problem is with the High Calcium thread in the Not diagnosed with mets but concerned.
Best wishes
Sylvia
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I am posting this for your interest.
Best wishes.
Sylvia
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Hi Sylvia and Canuck,
Thanks for your interest in keeping this thread active. I appreciate both threads just being there when people search for high calcium levels or parathyroids. Many seem to arrive here in their time of need by searching the BCO threads so perhaps not as critical it remain in the active threads list. Thanks for all you do to inform us of this unique problem that is too often misdiagnosed or overlooked by doctors. I really like the diagram you just posted. Thanks.
Ceanna
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Howdy. Just wanted to say I will also be following these threads. Today is the first I've learned of a connection between PTH hormone and osteopororsis. I had just a regular Dr. appt. today and I asked her thoughts on Prolia which MO wants me to take. She said the patients she knows are not having any issues taking it. She said I was young for having been diagnosed w/OS (hip-I'm 57), and that I should be getting some sort of treatment for it. I'm not due for another DEXA until December of this year. I will be getting my PTH tested in 6 mos. ---so who knows if this will lead anywhere? I just checked my last 2 calcium readings and they were 9.6 and 10.1 (normal range). I also have/or had low Vit D. but will be changing from weekly script to a daily supplement soon.
I so appreciate the information one can find here by using the search. Thank you all, have a great weekend!!!
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Hello, just checking back with everyone. It's been just over a year since I had one adenoma removed from my parathyroid. I'm struggling with Hashimotos and my calcium is still hovering around 10.5. I was told I didn't have any other adenomas, thank goodness, but the TPO antibodies are growing fast - just under 500 reading now and I'm having odd sensations in my neck. They found 5 thyroid nodules with the US recently - they are in the "moderately suspicious" category. Doctor wants to wait a few more months for next blood test. T4 and T3 are in "normal" ranges. Any insight, thoughts? (just thought I'd ask as this group is always so informed)
Hope you are all doing well.
https://www.uclahealth.org/endocrine-center/thyroid-and-parathyroid-disease
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2ndGen, sorry you are still having high levels of calcium. I would think they should be checking you further for parathyroid problems. From personal experience, all blood thyroid and parathyroid tests I had varied widely and were up and down--sometimes normal and sometimes not, an ultrasound, sestamibi scan, and CT scan, all failed to show that what they thought was a "thyroid nodule" left after a thyroidectomy, was actually a parathyroid adenoma. Literally, within 1/2 hour after it's removal, my calcium levels returned to normal and have stayed normal ever since. I learned PT adenoma's can be outside of their normal location behind the thyroid. If left go too long, high calcium levels can cause a number of problems like osteoporosis and kidney issues. Get another opinion if you can from a specialist in parathyroids.
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Hello 2ndGenBCA,
I just wanted to say that I agree with everything that ceanna says. I think you should get this checked out by a specialist parathyroid consultant. My own calcium level dropped immediately to normal when I had the parathyroid adenoma removed.
Thank you for the links. I found them most informative.
Best wishes.
Sylvia
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sylviaexmouthuk thanks for posting that diagram. really interesting. I had a parathyroidectomy 15 years ago and no one has ever shown me a picture that shows everything so well. Waiting to see if radiation has damaged my one remaining thyroid. RO said it could take 9 months or so, before I will know...
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Hi everyone
I don't log on too often but just thought I'd add some info -- when my endocrinologist blew me off regarding the parathyroid issue, I knew I had to do my own research. I found the Norman Parathyroid center in tampa, and their website is jam packed with education and information. This is all they do, so I know they would have good info regarding breast cancer treatments and parathyroid. I did not have breast cancer when I had the parathyroid issue, so this was not something I looked into. But they were the only ones who took my issue seriously, and as I may have mentioned in an earlier post, I had 3 diseased parathyroid glands that had to be removed.
please check out their website (which I think is parathyroid.com) and get some of the best, comprehensive education and advice from the specialists.
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Hello MDRR,
Thank you for bringing parathyroid.com to everyone's attention. That is a good site to look at. I do not think orthodox medicine knows much about parathyroid problems. I was walking around with a parathyroid problem without any symptoms. When I was diagnosed with breast cancer and had high blood calcium levels, my oncologist etc. decided to do a blood test to rule out metastases. I was diagnosed with an overactive parathyroid and eventually had one parathyroid removed where there was a non-malignant adenoma. I do know from the breast cancer/consultant surgeon that the parathyroid problem preceded the breast cancer. There is research to show that parathyroid problems may cause breast cancer.
Parathyroid problems are not rare as my GP insisted. They are just under-diagnosed. I recently read that they are quite common in menopausal women.
Keep this thread going and also look at and bump up High calcium levels thread in the forum Not diagnosed with metastases but concerned.
Best wishes to all.
Sylvia
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Hello AutismMom1,
It was interesting to read your post. I have no idea how long I had a parathyroid problem before it was discovered in 2005 when I was diagnosed with breast cancer. My breast cancer consultant/surgeon said that by the size of the adenoma on my lower right parathyroid gland it had been there for quite some time. How many parathyroid glands did you have removed? Let us know whether radiation has damaged your thyroid.
Best wishes.
Sylvia
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Hello
I also want to mention that the norman parathyroid center has an app you can download to your phone called CalciumPro. I think it costs about 2-3 bucks in the app store (I have an iphone). Anyway, you can log in all of your blood work, urine tests, etc and then it will analyze the likelihood that you have a parathyroid issue. It's, of course just a screening, but pretty nice to put it in your own hands to get an opinion. Mine was in the 'very likely' category even after the endocrinologist said it couldn't be that. And after my surgery to remove the diseased parathyroid glands, it now shows 'very unlikely'. Just more info in case anyone is interested.
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Sylviaexmouthuk Hi Sylvia,
I had 3 parathyroids removed. The surgeon could not find the 4th. She said some people don't have 4 or it could have been hiding. Over the years my calcium levels remained Ok, even though I was terrible about taking calcium supplements. So she surmised that the last one was indeed hiding in my neck somewhere. Do you have any idea where I can find the research that shows about parathyroid problems causing BC? My surgeon was concerned about that since I have a genetic condition that caused my parathyroid problems and she wondered if there was a connection. She spoke to other doctors and researched and came back empty handed - and it is a big teaching hospital. So I am surprised they missed a connection like that and want to follow up if you can point me in the right direction... thanks!
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Hello AutismMom1,
I read your post with interest.
My information is that a parathyroid gland can be elsewhere.
Have you been alright since having the three removed? I would suggest that you read all eight pages of this thread as it is full of information. It was started by Sam52 and I met her on this thread when I was preparing for a parathyroidectomy, after finishing and recovering from my breast cancer treatment. You might also want to read the eight pages of another thread entitled High calcium in the forum Not diagnosed with recurrence or metastases but concerned. There is a lot of correspondence there as well between Sam 52 and me. We went through our parathyroidectomies at roughly the same time.
You were asking about hyperparathyroidism and the connection between that and breast cancer. The research that I looked at and that Sam52 had looked at was "The association between primary hyperparathyroidism and malignance – nation-wide cohort analysis on cancer incidence after parathyroidism 2007". I think it was from the Karolinska Institute in Sweden.
My breast cancer consultant surgeon told me that my hyperparathyroidism had definitely preceded my breast cancer, judging from the size of the adenoma that was on my lower right parathyroid gland. I was not aware of any symptoms and might have had it for a very long time. It was discovered by chance when I was diagnosed with breast cancer.
I hope this helps.
Best wishes.
Sylvia xx
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Hello everyone,
I thought you might be interested in the following article:
Is Breast Cancer Associated with Primary Hyperparathyroidism.
The research is as recent as 2019.
The link is:-
I have also been reading about the connection between breast cancer and thyroid problems.
Please keep this thread going, as well as the High Calcium thread in the forum Not diagnosed with recurrence or metastases but concerned.
Best wishes
Sylvia
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Thanks Sylvia - I can't wait to read those studies and look at the other thread.
I thought I was Ok since having the 3 removed 15 years ago. I get occasional tingling when I am lax about taking calcium, but otherwise I thought I was fine. And my recent Dexascan was still good. Now that I am looking at the title of the study you posted I wonder why my endocrinologist(s) never pointed out the possible breast cancer link, I would have been better about getting mammograms and doing self exams. We had no BC history in my family on either side, so I never worried about it. I appreciate all the info you posted!
AutismMom1
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Hello everyone,
Please keep this thread at the front of the active topics.
Best wishes to all.
Sylvia
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This is the first I've seen with these 3 diseases related. I first had 1 parathyroid removed after kidney stones & a blood test that dx hyperparathyroidism in 1992. No problems since. Then I was diagnosed with hashimoto's & eventually had radio iodine to treat an overactive goiter, back in 2008. To date all thyroid & parathyroid levels are within range & the hashimoto's marker is present. I was diagnosed with bc in March 2019. Interesting to learn if all your similar dx.
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DWR, we welcome you to our community. We are sorry that you've been through so much, but pleased you are finding people in similar situations.
What treatments are you going through?
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Hello DWR,
I read your post with interest and I was sorry to read that you were diagnosed with breast cancer in March 2019. I do not know the details of this diagnosis and it would be useful if you could post them. Were you diagnosed with invasive ductal carcinoma (IDC) and were your receptors hormonal positive or negative? You can get through all this and can get support on these threads.
You might be interested in an article I have been reading this past week from Cancer Active. The article is entitled "Radioactive iodine treatment increases cancer risk". You should be able to find it through Google.
The article is most interesting and starts off with the following sentence:
"The use of radioactive iodine in people with overactive thyroid problems has been shown in research from the National Cancer Institute to be linked to cancers in other parts of the body, particularly breast cancer."
It is further quoted that this treatment has been one of the most common treatments used for over 60 years. There is a lot more information about the treatment being excessive and patients reporting that the whole thyroid has been destroyed. Please try to read the rest of the article to get all the details.
This article leads on to another one entitled "The link between synthetic thyroxine and breast cancer".
I was diagnosed with non-hormonal breast cancer in 2005 and at the same time, quite by accident, with hyperparathyroidism on the lower right parathyroid gland. My breast cancer was on the right. I had surgery for the parathyroid problem, a non malignant adenoma and my blood calcium and parathyroid hormone levels returned to normal almost immediately. My breast cancer consultant surgeon and endocrinologist told me that the parathyroid problem had preceded the breast cancer.
There is another article from Cancer Active entitled "Is the synthetic hormone thyroxine behind your cancer?".
I do hope this helps and I send you very best wishes during your breast cancer journey.
Sylvia
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Hi. I am new here. I was Dx with Ductal Carcinoma in the left breast. Had a lumpectomy and radiology but no Chemo at that time, in 2011. My oncologist did blood tests on me regularly and during one visit he told me to go to my PCP and request to see an Encologist, that he suspected a Parathyroid problem and that I could tell her he said to. He also told me to get an Ultrasound. My PCP sent me to a Encologist who reviewed my bloodwork and asked me if I had broken any bones. I told him "no" at first, and he said "they" won't test you for this unless you have had broken bones. I asked why and he said because of my age. I was 61 at the time. I'm sure he saw frustration on my face. He asked again if I had broken any bones and I told him "my horse steped on my big toe and broke it and years ago I broke my tailbone, does that count? I could see we were getting no where and I begged him to help me. He said "What do you want me to do?" so I blurted out "I want an Ultrasound". So he ordered an ultrasound. I don't know why the Dog and Pony act. I got the ultrasound done and they saw a parathyroid, errant and enlarged. I had surgery to remove the one bad Parathyroid and she felt there were three remaining healthy ones. I had a follow up appt. with the surgeon but never went back to the Endo. I think while visiting my Oncologist and discussing new symptoms, it is important to look ahead and ask questions. Even regarding the "hypothetical " disease process of diagnosing and be educated to best help myself get proper treatment. It is natural to not want to pile on new bad news, especially if it is only "hypothetical" at that point. I may never have known about this bad gland, had I not known to ask (quite firmly) for an Ultrasound. I have huge respect for Oncologist as their world of knowledge is vast and they have seen and treated much.0
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Hello LovedByAHorse,
I read your post with great interest.
I think that all routine blood tests should include a parathyroid hormone test to make sure all is well. Trouble with the parathyroid is not rare, it is under diagnosed.
With breast cancer, if a patient has elevated blood calcium levels, they should be investigated to see whether these levels are due to an overactive parathyroid gland or metastases to other parts of the body.
Wishing you all the very best.
Sylvia
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Does a thyroid ultrasound include looking at the parathyroid? I am having a thyroid ultrasound as a baseline since I was diagnosed with Chek2 mutation at the time of BC diagnosis and have an increased risk for thyroid cancer. However, as part of my pre-surgery bloodwork I had an elevated calcium level. My SO was not concerned since it was only slightly above normal at 10.7 (vs. the high end range of 10.5). I have not met with an MO yet but scheduled for early September -and getting my Oncotype results- so I will ask him as well. Being new to everything, I don’t know if I will have continued blood tests going forward that will look at calcium levels.
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smackan, Hi, sorry you have to worry about thyroid too. You'd probably have to check with your ordering doctor to see what the ultrasound includes. Parathyroids are behind the thyroid and hard to detect even in the best of circumstances with other types of testing. Please continue to monitor your calcium levels. To have parathyroid problems, your calcium level does not have to be far off normal. I know from first hand experience that levels in the 10s are not normal, but within 1/2 hour of removing a problem parathyroid adenoma, my calcium level dropped into the 9s and has remained so since. I had let an endocrinologist tell me for years that he was "watching" if my levels would go higher than 10.5, but meanwhile I developed osteopenia and mild kidney issues. Keep asking for followup testing of calcium and also have your doctor check your PTH (parathyroid hormone) levels as they both are indicators. Please let us know how you're doing.
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Smaken, all you need to do is look above to a post by Lovedbyahorse. She had an ultrasound and the parathyroid problem was discovered.
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bump.
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Hello Canuck76,
Nice to see you back on the thread. How are things? Did you get your surgery or are you still waiting?
Best wishes.
Sylvia
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