Parathyroid disease and breast cancer
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Hello everyone.
Keep this thread on the front pages.
Best wishes to all.
Sylvia
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Thank you for bumping or I may have never come across this thread. I am not dx with bc...I have appt with breast surgeon next week for abnormal mammo and us, and I am "studying" for the meeting.
I was dx at age 40 with osteopenia, following non-traumatic fractures to two ribs. I had an oophorectomy at age 35 due to endometriosis with no HRT. When I was dx with osteopenia I was told it was due to lack of estrogen and a severe vitamin D deficiency. This sounded reasonable enough at the time so I went on my way with a script for Vitamin D.
I am 47 now. I have no idea if my calcium levels have ever been increased. No doctor has brought it to my attention. I've also had two dexa scans since that time, and as far as I know, there hasnt been any significant progression of the osteopenia. Incidentally I also have some of the symptoms mention in this thread, most overwhelming is the fatigue. I am NEVER not tired. Doctors have thrown many antidepressants at this problem with no relief. Now I don't take any.
My questions are whether or not osteopenia could remain stable over 7 years if it was due to a parathyroid problem, and whether a lack of estrogen contributes to parathyroid problems. I see my doctor in two days for lab results (they are checking vitamin D and TSH ironically enough), so will be sure to find out about calcium as well. Would it be reasonable to ask for PTH, based on my bones and other symptoms, even if the calcium is normal?
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Charlian, sorry you are experiencing so much and hope your doctor appointments go well. It can't hurt to ask for a PTH level test or you could wait for the calcium level results and get PTH done if calcium is anything but absolute normal. I found over the years that my calcium level varied from test to test, although higher than normal, and that my PTH level varied also, so it's hard to go by only one test result. I had had two Dexa scans before uncovering the parathyroid adenoma and the results for both were similar--not too much progression over the 3-4 years between, Remember, the high blood calcium is from calcium taken from your bones--no loss is good!! With the symptoms you state, you probably need to look into the PTH test and parathyroid issues. All the best and let us know how you're doing. There is another thread for high calcium levels, if you're blood tests come back high--just search "high calcium" in the search box.
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Hello Topsy3,
If I were you I would ask for a parathyroid hormone test. I can only state my own case. I had none of the symptoms common to this disease, bones, groans and moans, and would never have known that I had an overactive parathyroid gland if I had not been diagnosed with breast cancer and my oncologist concerned about high calcium blood levels and the possibility of spread with my breast cancer had not done a PTH test. I was immediately told that I had an over active parathyroid. I eventually had scans that showed an adenoma on my lower right parathyroid (the breast cancer was in my right breast). I eventually had surgery to correct this, and my calcium levels became normal.
I did not have any signs of osteoporosis such as loss of height, but this did happen after my breast cancer treatment. I would say that even with parathyroid problems, bone trouble such as osteopenia and osteoporosis may be slow to develop.
I hope this helps and good luck with your doctor.
Best wishes.
Sylvia
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Thank you Sylvia and ceanna. I've read through this entire thread, and just feel light a light bulb went off. If the answer to the bone/joint pain, gi problems, palpitations, and most importantly the overwhelming fatigue could be parathyroid related, it would be like a miracle to me. And if I could stop the osteopenia in its tracks, or if I'm understanding correctly, possible reverse some of it, that would be a double miracle. I will come back and let you know what the doctor says.
Thanks,
Topsy (formerly Charlian)
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Wishing you the best Topsy.
I was also grateful to learn of parathyroid from my regular Dr. (or NP). I have the PTH test coming up. Could be that if I have it, it could have caused my osteoporosis. I am also equally eager to eliminate the condition as well-- since MO has been harping on starting Prolia. I'll be back in a few weeks to give my lab results as well.
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Hi Ladies
Just wanted to say my experience with the parathyroid was that I had 2 doctors very tuned into odd symptoms. My blood calcium was elevated and then I had too much bone loss in 1 year. Was still in the normal density range, thank goodness, but it was too much. But my PTH was never elevated. The first endocrinologist dismissed me. But I learned that elevated blood calcium is never normal and should never be ignored, even if it's slightly elevated. I mentioned in an earlier post the website parathyroid.com -- it's loaded with education about the parathyroid issues. I ended up in Tampa (I'm from Maryland) and had 3 diseased parathyroid glands removed - problem solved immediately. I encourage you to dig for answers and wish you the best of luck.
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MDRR Do you mind me asking how high your blood calcium was? I did check out their website when I 1st learned about this. It says adults should have calcium levels in the 9s. Mine has not been out of range but have had 2 readings over 10. Will find out soon about the PTH level.
Thanks, that was an informative website. It is an under diagnosed condition with a seemingly easy surgery and recovery.
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Hi
Don't mind at all! My calcium was elevated for about 2 years and was in the low 10s - 10.0, 10.6, 10.3, 10.3, 10.7, 10.7 were my blood tests.
It's wild that while still on the table and under anesthesia during surgery, they take your blood and the blood calcium is immediately in the normal range -- that just floors me!
I was lucky - I didn't have any of the related issues like confusion, fatigue, heart issues, etc. It can really be dangerous, yet as you said, so easily corrected. The surgery was so simple that I literally went hiking the next day before flying home to MD.
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Hmm. In June I had the parathyroid test (and other tests) to rule out easy to treat causes for osteoporosis. Everything is nice and boring, but my blood calcium level has been 10.1 or 10.2 for the last four years. My endocrinologist wasn't concerned.
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I understand. My endocrinologist (I was a first-time patient at that time) basically blew it off and said it wasn't an issue. But I felt something wasn't right based on the other 2 doctors' concerns. That's when I found the parathyroid site, did my own research. I decided to have a consultation with them since that's all they do (the endocrinology practice that runs that site) and discovered the issues. I'm not suggesting you need to use that site or those docs, but just that you keep digging if you feel something is not right!
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Topsy, ctmbsikia, and edj3,
I agree with MDRR--don't let the doctors brush off any high blood calcium levels. My old, and now retired, endocrinologist said he would keep watching my only slightly high calcium levels. Test results for calcium varied for years in the high 9s, low to mid 10s and PTH especially varied greatly--PTH is going to vary and is often normal even if you have parathyroid problems . Once he retired and I saw another endo, they immediately jumped on the high calcium level. It took quite a bit of testing for me--ultrasound, sestamibi, and another test to finally discover the errant parathyroid, but a minor surgery resulted in normal calcium levels immediately and they have remained normal since. Can't say all the groans, moans, bones issues have turned around as quickly, but I will find out about my osteopenia when I can repeat a dexa scan in late 2020. I found a regional surgeon who worked on parathyroids and I hope you can too. Parathyroids, with their location behind the thyroid, are tricky and I urge you not to trust a general surgeon or regular ENT if you end up needing surgery. All the best and let us know how you're doing and if you have any questions. Ceanna
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Hello everyone,
I have read all your posts with great interest. I agree that hyperparathyroidism is under-diagnosed and that you must keep digging and insisting if you feel that something is wrong. I remember my GP telling me that hyperparathyroidism was very 'rare' and that he had not treated anyone for it during his whole career. I do not think it is that rare but just not tested for enough. Here in the UK when a patient has a routine blood test, PTH is not tested, just the thyroid level.
It was through meeting sam52 on the thread that I got to know about parathyroid.com and also about Swedish research showing a possible connection between hyperparathyroidism and breast cancer. I showed the research to my consultants but I do not think there was any follow up. My endocrinologist, who was also my breast cancer consultant and surgeon, told me that judging by the size of the adenoma on my lower right parathyroid gland, that the hyperparathyroidism had preceded the breast cancer.
It will be ten years on November 11th this year that I had my surgery. I did not have any symptoms of which I was aware before the surgery but my calcium was normal straightaway after surgery.
Sending best wishes to all of you.
Sylvia xxxx
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Hello! Thank you all for your responses. I went to the dr today and got my lab results. Calcium is 9.5, and all previous have been in range, the highest being 9.7. And I saw that 10 years ago it was actually less than 9. So no pht for me. We did discuss the bone loss and she said it most likely IS due to post menopause without HRT. And we discussed the fatigue and are going to try some things to combat that. I told her it isn't depression, I've had that, and this ain't that. She said if we cant get fatigue under control she would consider sending me to endo since I've previously been subclinical hypothyroidism, but at this point there is nothing to warrant that. Oh, and vitamin d is 16, so not as low as i thought. We are going to do a vit d calcium combination. Again, thanks for all the input and feedback.
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Glad you are getting some good news on the parathyroid and I wish you best of luck in getting to the bottom of the issues you're dealing with!
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Topsy, glad your calcium level is within range. If your 16 on the D level is measured like mine was, it is very low!! You might want to read the Vitamin D, calcium, and Vit K2 thread here and consider magnesium. Calcium taken in isolation does not work all that well for bones.
VITAMIN K2 combined with Vitamin D3 IMPROVES bone density
Hope your fatigue improves on the Vit D. All the best and let us know how you're doing.
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Thank you ceanna, I will check that out.
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Hi all: Did my lab work this morning so I'll know soon if my parathyroid is off and could have possibly caused my OS which is going to get worse by taking the AI to keep my breasts from growing tumors.
Glad to have found this information here. I had never heard of it until my GP doc mentioned it. I see my MO on the 7-Oct and the GP a couple of weeks after that so both will have all the results they need. Praying I pass the A1C, don't want to get another diagnosis added to my list.
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No she did not consider the Tamoxifen. I'm OK with that actually. MO wanted to begin Prolia earlier this year but #1-my insurance denied it and #2-they sent me to the dentist first and I needed some work done and all that took a few months. I cannot get another DEXA until December.
So we have all these things to consider going forward.
I did break my ankle (left side) right after going through menopause. Sorry about your pelvis. Ouch! I am not a runner but I am walking and doing weight bearing exercises and at least once a week I try to work on balance.
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I want to thank all of you who kept this thread active over the years. At my regular follow up with MO, my calcium came back at 10.6. Luckily, she didn't ignore it, and said she wanted to re-test (although she wanted to re-test in 3 months, and I asked to retest a lot sooner), and if it would be high again, she would check my PTH and refer to endocrinologist.
Re-tested 2.5 weeks later, calcium at 10.2. Looked back, and over the past 2 years that I've been tested, including during chemo, my readings were often high 9s and some 10s. My lowest was in April of 2018 at 9.4, but when I looked at all 2019 readings, including at my PCP for a physical and rheumatologist for (hopefully) unrelated issue, it was 10.1, 10.0, and 9.9. With my September readings of 10.6 and 10.2, after looking at this post, I knew I didn't want to "wait and see, and maybe take another calcium reading", and asked my PCP to run PTH. Got a call today that it's 115 - very high! I'm being referred to endocrinogolist. I'm hoping this can be fixed (surgery?) and it will be a missing puzzle piece.
When I was DXed with BC in 2017 my Vitamin D level was at 16. It came up with 4,000 IU supplementation, but I couldn't believe how low it was. I also had a DEXA in 2018 before starting AI, and I was found to have osteoporosis. At 41! Now, reading parathyroid.com and all the posts here, I'm amazed that no one thought to test my PTH sooner! Apparently, it's a common problem, no wonder my MO mentioned PTH and endo as soon as she saw 10.6. But! I've had quite a few readings around 10, even 1 was 10.2, and she didn't call them out of range, because the lab lists 10.3 as upper range. Reading on parathyroid.com I see that at 40+ years old, 10.1 is the upper range, and even lower as we get older. Ugh. I guess I will never know just how long I had this problem, and if it didn't contribute to my having BC at 40, with zero family history or risk factors.
I never had any symptoms listed as common, such as fatigue. Well, will see what endocrinologist say. Should I start looking for a surgeon? My PCP referred me to an endocrinologist closer to home, but I also sent my MO a message asking for recommendations in the hospital system where she is and where I had all of my treatment. It's the best hospital in the state, and if I indeed need surgery, I'm going to be treated there.
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Hi! My calcium 9.3%. PTH 41.4. Onto the Prolia I guess for OS treatment if we can get my insurance company to approve it?
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ctmbsikia - looks like your bloodwork is all good - yay!
Ladies who went through hyperparathyroidism diagnostic and treatment (surgery) - what was your process? I never thought it would be so difficult to get an endo appointment. I had to call several clinicls in my hospital system, because one in the central hospital where I was treated had the earliest available on December 5th! I just don't want to wait this long.
Got an appointment at a more rural clinic, but for Ocotober 14th (I also have an appt with an endocrinologist outside of the hospital system for October 30th, and I'll keep it). I was reassured that if this endocrinologist I see on the 14th ultimately thinks I need surgery, I can still do it at the central hospital (two surgeons who do 150-200 parathyroid surgeries a year, which was what I need - experience!)
Once endocrinologist agrees you are likely to have hyperparathyroidism (which I probably do, based on blood work - high Calcium and PTH), are they going to do ultrasound? Sestamibi scan? CT scan? Who orders them - endocrinologist or the surgeon?
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FarAway, sorry you had such a difficult time getting an app't. My tests were ordered first by endo, but then CT prior to surgery by the surgeon. My ultrasound and sestamibi were inconclusive but they knew there was a problem due to blood work. Have surgery only with experienced parathyroid surgeon. Be persistent!! All the best, Ceanna
ctmb, glad your test results came back OK. You will want to follow up periodically because test results often vary--especially the PTH.
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My experience was a little bit frustrating at first. I had no symptoms at first other than high blood calcium. My PCP knew that was abnormal but was watching it. Then about a year later, my gynecologist said that even though my bone density was normal, it had dropped too much in one year. So she and my PCP determined I should take these results to an endocrinologist. I also had to wait several months to get in as a new patient, and the endo I had selected basically dismissed it. This is because my pth was normal. I did my own research and learned a ton on parathyroid.com, enough to know this should not be ignored.
Long story short, I ended up having surgery and had 1 parathyroid gland with a tumor, and 2 discolored and on the way to disease. 3 removed and have been fine ever since.
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Hello every one,
I was glad to see that this thread has been kept going. I have not posted in a while but have been active on this thread over the years. It is an important thread along with the High Calcium thread.
Best wishes,
Sylvia.
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Hello! I’m glad to have found this thread. I’ve had high calcium levels for my last two monthly labs and my MO just confirmed that my pth test indicates Hyperparathyroidism. I’ll be seeing her (MO) for my routine checkup tomorrow, and getting a referral for an endocrinologist. I came across the Dr. Jordan site and learned a ton in about 30 minutes. My case may be a little different in that I’m stage 4, and since my tumor load is low and responding well to treatment I’ve recently had a lumpectomy and am now receiving follow up radiation. I’ll be curious to find out what is recommended for me.
Some fatigue and memory/focus symptoms have been with me for a few years but I figured the cognitive issues were menopause related, and now hormone blocker related. I think I’ve probably had this brewing for a number of years.
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Rosie, welcome and I hope what you read here helps you. I hope your upcoming appointments help define what steps you should take on the parathyroid front at the same time as dealing with BC treatments. While it took many of us years to get doctors to respond to our high calcium levels, I'm glad your MO is following up closely. Yes, you may have had the problem for quite some time; parathyroid problems develop over years! Be persistent if you need to find out if the problem originates with a parathyroid adenoma. Not something easy to find and diagnose. Surgery by someone who specializes in parathyroids is critical and can solve the problem literally in minutes!! If you have any questions, ask away and we'll try to point you in the right direction. All the best, Ceanna
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Hello Canuck76,
Thank you for your private message.I was sorry to read that you are still dealing with your parathyroid problem.Come and join us on the thread and tell us all what has been happening.
Best wishes,
Sylvia.
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Thanks for the welcome, Ceanna. It’s nice to have others who can relate to this issue. The Dr. Jordan site makes me think it’s a simple fix but I’ll be finding out whether or not it really is for me. I’ve read back on some of this thread too, and it seems that in reality it’s not so simple as just having the surgery done. I’ll update when I know more on my situation!
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