Parathyroid disease and breast cancer
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hi
I’m new to the site and was dx with primary hyperparathyroidism last year. Yesterday I was dx with stage one BC. I only went in for a routine mammogram and really struggling now. I’ve had aches and pains in my bones but I’ve put that down to the hyperparathyroidism, now I’m scared the bc has gone to the bone.
How’s everyone else getting on
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Hello Canuck76,
I have been having a look at the active topics and was disappointed to see that the parathyroid thread was nowhere on the radar. I went back through some of it and saw that it had been inactive since April this year when you and I and others were posting. I then noticed there was a recent post in July this year.
I have been wondering how you are and whether you did have surgery for your parathyroid problem. I do hope I might hear from you and that we might get the thread active again.
Best wishes.
Sylvia
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Hello Alexisuk,
I just noticed your recent post and was interested to see that you come from the UK as I do.
Have you had surgery for your hyperparathyroidism?
If you can, read all the preceding pages on this thread and you will have lots of information and you will see my own story.
I was sorry to read that you have been diagnosed with stage 1 breast cancer and wanted to tell you not to be afraid. You can get through this.
I have a thread Calling all triple negative breast cancer patients in the UK. I do not know whether you have these negative receptors or not, but you are welcome to try the thread I started.
Wishing you all the very best and hope to hear from you.
Sylvia xxxx
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Hello Everyone,
This thread needs to be active.
Sylvia.
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Hi All,
I have joined the ranks of those with hyperparathyroidism. Knew I had high calcium levels for years but my endocrinologist wasn't worried. He retired and the new person was concerned. I had surgery to remove one adenoma and immediately, my calcium and PTH levels were normal. Hoping to restore some of the lost bone density with calcium supplementation. Not sure when the parathyroid went off track--before or after the breast cancer. Thanks for all the information I gleaned from this thread. Ceanna
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Hello Ceanna,
I was interested in your post. I am glad that you have now had your surgery to remove that adenoma and that all is normal. I think it was wrong that your high calcium level was ignored for so long. I think that when there is high calcium the parathyroid hormone level should be checked out immediately, because if this is high you need to get a scan (Sestimibi) to check what is going on with the four parathyroids. Any adenomas need to be removed. This is the only cure for overactive parathyroid.
The adenoma I had removed was the lower right one and I think it was no coincidence that my breast cancer was on the right.
I think that PTH should be part of regular blood checks. I do not think hyperparathyroidism is rare, it is under-diagnosed and it can be dangerous and life threatening.
There is another thread about all this, begun by Sam52 - Parathyroid disease and breast cancer. It is in the forum IDC (invasive ductal carcinoma).
There is another forum that might be of interest - Bone health and bone loss, which I am going to have a look at.
Wishing you well.
Sylvia xxxx
I have just realised that your post was in the thread I mentioned. The other thread is High blood calcium levels in the forum Not diagnosed with a recurrence or metastases but concerned.
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Sylvia, my bc and parathyroid adenoma were on opposite sides. I understand the old thinking of endocrinologists was a "wait and see" if the calcium levels went higher, but now they look further for problems even when the PTH levels vary widely like mine did. I had had Sestimibi and ultrasound but both did not show adenoma. Not until another round of high calcium and PTH levels and then contrast dye CT did adenoma show up and they did surgery. And, yes, I have read the high calcium thread and now have it in my "favorites." I was really hoping the removal of the bad para-t would improve my muscle aches and pains, but it doesn't seem to be happening. Also, now hair shedding more than normal. Did you experience anything like that? Thanks for your help.
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Hello ceanna,
I was interested in what you had to say about your bc and parathyroid adenoma were on opposite sides. I think that any of the four tiny parathyroid glands could be affected.
I was very interested about how the adenoma did not show up until you had a contrast dye CT scan.
I am keeping both of these threads in my favourites as well, so as to keep up-to-date with them.
I do hope your muscle aches and pains will improve. I do remember my breast cancer surgeon/endocrinologist telling me that in the medical establishment with reference to over active parathyroids, they described it as "moans, bones and groans" as symptomatic of it. I still think PTH should be part of regular blood tests. I think it is under-diagnosed.
I have had no problem with shedding hair. My breast cancer was IDC with triple negative receptors, so it was non-hormonal and no further treatment after chemotherapy, surgery and radiotherapy. I noticed that you were ER+ and PR+, so have you been on anti-hormonals such as tamoxifen and aromatase inhibitors, such as Arimidex? I think some of these may cause hair loss and certainly the aromatase inhibitors can cause osteoporosis.
Best wishes.
Sylvia xxxx
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Sylvia, no, apparently it is not uncommon for the usual scans for parathyroid problems to not show adenomas. That's why my specialist pushed for the contrast dye test after continuing bad calcium and PTH level tests, even though the other tests were "normal." There are probably many people who passed the sestimibi test or ultrasound but still have parathyroid problems.
For a couple of reasons, I am not taking tamoxifen or AI's so they are not the cause of hair loss. Hope it stops and reverses soon!! And also hoping to get rid of the "moans, groans, bones, and stones!" Time will tell. Thanks again. Ceanna
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Hello Sylvia and discussion members,
Just checking in - haven't been on the forums for awhile now - just trying to deal with the day to day. As you may remember Sylvia, I had my parathyroid removed in March of this year. I had also dealt with some root canal issues (among other things).
Fast forward - Currently, after my third parathyroid post-op blood test, my blood calcium is hovering at 10.3. Decided to visit a kidney doctor after the last blood test at the oncologist showed a low GFR at 52. He ordered a 24 hour urine test recently and my calcium measures 333. Waiting for results from blood test this week - had calcium, pth, vitamin d, etc. all checked. Not sure what is going on. I work daily to manage the lymphedema in my legs and trunk - compression stockings, sequential compression therapy, some vibration plate or walking exercise. However, I'm feeling like I am always battling inflammation of some sort. (as you may remember, I quit the AI drugs some time ago as they were wreaking havoc on my body.)
Have you heard of calcium levels staying high in blood (above 9's - and being elevated in urine) post adenoma removal? I was assured all 4 of the tiny glands were examined and only one showed an adenoma. I read some posts in this thread that indicate perhaps additional parathyroid problems can reoccur after adenoma removal. Maybe there's a kidney issue. I'd sure like to figure out what is causing these high calcium levels so that I can deal with it. I don't want the high calcium to cause other problems as I've read on so many sites that it can.
Any thoughts on whether I'm seeing the right kind of doctor, pursuing the answers to the right questions, etc.?
Look forward to any thoughts you may have.
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Hello 2ndGenBCA,
If I were you I would see another consultant and get this all checked out.
I would be curious to know whether you can have a problem with remaining parathyroid glands after one or more have been removed. My own feeling is that if one can go wrong and cause an adenoma, then the other three can probably go wrong as well. It is nine years since I had one adenoma removed and I was told that I did not have to continue having blood tests for PTH. I think we should be monitored regularly.
Remember, also, that hyperparathyroidism can be primary or secondary. What I had is known as primary hyperparathyroidism caused by a non-malignant adenoma on one of the glands.
Secondary hyperparathyroidism happens in response to a condition that causes abnormally low levels of calcium in the body, such as chronic kidney failure.
What I would like to know is what causes the adenoma to grow on the parathyroid gland. Is it something to do with getting breast cancer? Research connects the two but does not seem to know which one comes first.
My breast cancer consultant/endocrinologist told me that my over active parathyroidism preceded the breast cancer.
Have you looked at parathyroid.com?
Best wishes.
Sylvia xxxx
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I posted concerns the other day about my high calcium. It’s gone from 9 in February to 10 two days ago at my normal HO appt. I have been experiencing extreme fatigue, depression, abdominal discomfort, bowel issues, and for about a month my glands in neck have been extremely itching. So much so I’ve bruised my neck from scratching. I realize this isn’t a symptom but it’s strange. Last night at work I started having shortness of breath and kidney pain. So off to ER. They did blood work and CT of chest and abdomen. It was fine. But calcium is up to 10.4 now. So I’ve been doing research on high calcium. I called my onc today and left a message the I am concerned about parathyroid and want a PTH test done. I can’t keep functioning this fatigued. And now shortness of breath along with it. I’m hoping that maybe you all could offer me some advice as I’m at my wits end
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Fiona, sounds like a PTH test would be a good idea. Perhaps get a referral to an endocrinologist who specializes in parathyroid/thyroid, not diabetes. It took me years to be diagnosed with hyperparathyroidism after way too many high blood calcium and PTH level tests. Keep pushing for answers and let us know how you're doing. While I'm not promoting their surgery technique, the following website provides lots of information about parathyroid problems, symptoms, and brings up issues you can check out with your own doctor: https://www.parathyroid.com/parathyroid-symptoms.htm
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Bump
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Hello
I just saw this post and never thought about a connection. I was diagnosed with BC in january, 2018. In 2015 I had a parathyroidectomy (3 removed) due to high blood calcium combined with too much bone loss my first year of menopause. This sent me to the endocrinologist, since my other docs knew something was up. Fortunately it was caught while my bones were still good. However the endocrinologist blew me off, so I started doing my own research and came across the Norman Parathyroid Center in Tampa, FL. Their website has tons of educational information, and after learning everything about it, I had further testing. They take your blood calcium levels while you are on the operating table, immediately after your surgery to remove the diseased parathyroid gland(s) -- and it was returned to normal, which I found fascinating. It stopped my bone loss and my blood has been normal ever since.
Interesting about whether there is a connection between the BC and parathyroid; I somehow believe alot of what's going on in our bodies is connected.
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I was diagnosed with hyperparathyrhoid a few months ago. I finished up chemo in Feb, which was followed by radiation. I think I read the rads can cause it. Anyone else hear that? The endo dr asked me if I had fractures lately and I couldn’t think of any. But then I remember injuring my ribs while just turning over in bed, and an elbow, both which took at least a month to feel better. Now I find I have a torn meniscus in my knee. Wondering if that could be a symptom as well. Geese. This chemo did a number on me. But glad to say I am NED.
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bump
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Anybody have kidney problems to go with their thyroid problems?
See if thyroid treatment is necessary. In some cases, calcium kidney stones are caused by hyperparathyroidism, which is when the parathyroid glands produce too much parathyroid hormone. This can happen when a small tumor grows on a parathyroid gland, or when a separate condition causes the parathyroid to overproduce parathyroid hormone. Once your doctor has determined the cause of the hyperparathyroidism, he or she will recommend the proper course of treatment to correct the problem.
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Well I answered my own question. 90% of kidney stones are caused by hyperparathyroidism.
https://www.parathyroid.com/kidney-stones.htm0 -
I'm in the process of being tested for this as my bones are apparently thin and I have no life style reasons as to why that would be.
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You are young too. When you say thin bones do you mean Osteopenia or Osteoporosis? Osteoporosis can be genetic. I have both plus I have calcium deposits in so many places....even one of my thyroid nodules is calcified. We have to be detectives!
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Symptoms of parathyroid
What are the symptoms of hyperparathyroidism?
The most common symptoms of hyperparathyroidism are chronic fatigue, body aches, difficulty sleeping, bone pain, memory loss, poor concentration, depression, and headaches. Parathyroid disease also frequently leads to osteoporosis, kidney stones, hypertension, cardiac arrhythmias, and kidney failure. This is a devastating condition if left untreated.
Is parathyroid disease serious?
Hyperparathyroidism is a serious disease that becomes very destructive with time. Over time, it can lead to problems throughout the body, including osteoporosis, high blood pressure, kidney stones, kidney failure, stroke, and cardiac arrhythmias. Because it is a serious and progressive disease, patients with parathyroid disease should undergo parathyroidectomy, an operation to remove the parathyroid tumor.
The symptoms of hyperparathyroidism are different in different people. Sometimes people have symptoms making them miserable within the first year or two of having high blood calcium. Other times it can go 6-8 years without causing too many problems. Eventually, almost everyone will develop symptoms or complications of this disease (read our blog on this topic). Although it is benign, it will slowly destroy your body and take away the "joy of life" while it does so. The good news is that it can be cured with a simple operation done by an experienced surgeon.
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I was given the statement that "moans, groans, stones, bones, with psychiatric overtones" are signs of hyperparathyroid problems. Do you have pain, constipation, abdominal discomfort, kidney stones, osteopenia or osteoporosis, fatigue, depression, crabbiness, or confusion? Consider going to an endocrinologist to get your PTH (Parathyroid) and blood calcium levels checked. I went for years with high calcium and PTH levels and worsening osteopenia before being diagnosed with hyperparathyroid. A minor surgery corrected the problem within hours of removing the bad parathyroid (we have 4 and I only needed one removed).
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ceana, my calcium is always 9.2 normal range and and two pth tests in normal range. And yet I think there is a problem. Two thyroid nodules since radiation. It’s watch and wait and watch and wait...
Any ideas?
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Marijen, sorry, I really don't have any ideas beyond just keep checking those levels. Nodules could mean a few different things, or nothing. Have you seen an endocrinologist who specializes in thyroid?
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BUMP
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Hello Canuck76
How are things with you these days? I see this thread has got active again.
Sylvia
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hi Sylvia, I still have parathyroid tumour-Drs here are not doing anything about it. High Pth , high normal calcium. Looks like I have to go elsewhere for surgery.
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Hello Canuck76,
It was nice to establish contact with you one again.
I was really surprised to learn that you still have your parathyroid tumour. I cannot understand how doctors can decide not to do anything about it. This seems to me to be negligent. When you say doctors, do you mean GPs? Surely you should be in the hands of an endocrinologist who will know how serious hyperparathyroidism is and how it can only get worse and worse without the simple surgery to remove any of the four parathyroid glands that are malfunctioning.
How is living with this affecting your health? There seems to be so many symptoms that can be a sign of this disease that they may go unnoticed.
I have been busy with the triple negative thread that I started in 2010 that I have not looked at this thread that I tried to bump up in December 2018. I was surprised to discover that this thread had got quite active again in 2019. I checked it out this week because one of the women on my triple negative thread has high calcium levels and is supposed to be getting a parathyroid hormone test. I have mentioned this thread to her and also the High calcium thread in the forum Not diagnosed with recurrence or mets but concerned. I have bumped this one up again as well.
It would be so much easier to deal with hyperparathyroidism if testing for parathyroid hormone levels were made part of simple blood tests, like thyroid hormone is. Hyperparathyroidism seems so clearly to be under diagnosed and not rare as i was told.
It will be nine years in November this year since I had my surgery and had one adenoma tumour removed. My breast cancer consultant surgeon told me at the time that after the surgery I was cured. However, like other patients, I do sometimes wonder whether this is true and whether the remaining glands can malfunction.
I am going to try to keep this thread going now. I am also wondering about thyroid problems. Another patient on my TNBC thread has had breast cancer followed by thyroid cancer.
What an imperfect system the human body is.
Wishing you all the very best.
Sylvia.
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Hello to all of you who have been posting on this thread.
I have just been catching up on the posts that have appeared over the past months and have found them all very interesting.
Hello to ceanna, marijen, WC3, BarbD, MDRR, Fiona76 and 2ndGenBCA, and of course Canuck.
I do hope that, if you are still viewing here, that you will post so that we know how everyone is getting on.
Those of you trying to get tests and/or surgery please keep pushing. You do need surgery to get cured.
If anyone has had another diagnosis of hyperparathyroidism and problem glands after surgery and supposed cure, please let us know.
Has anybody read any more research about the connection between breast cancer and hyperparathyroidism? Please let us know.
Do not let the medics fob you off, as this is a very serious and life threatening condition.
Best wishes to all of you.
Sylvia.
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