High Blood Calcium Levels
Comments
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Lilly, sorry you are having difficulties with calcium levels. If your calcium is going higher, it could be parathyroid, but only additional tests could show for sure, and even then, doctors are often reluctant to think parathyroid. Do you know the parathyroid is swollen from a scan or??? Your 4 paras are behind the thyroid and you probably wouldn't be able to tell without scan. Even with a scan, it's hard to tell. Ask your doctors for a PTH (parathyroid) test and any others needed. They often wait for later retesting even if they are not normal. You're in a big city so ask for referral to an endocrinologist who specializes in parathyroid, not just thyroid or diabetes. That's the specialist I finally had to find to get diagnosed and a minor surgery took care of my high blood calcium within the hour!! They have been normal for the almost 2 years since. Feel free to ask any questions you have. All the best. Ceanna
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Thank you for getting back to me Ceanna. I have scheduled an appointment with PCP next week and she wants me to do a blood test before I see her. I think it must be parathyroid that is swollen because it is on one side only and you can see it since I have a skinny neck. I do live in a big city but in order for insurance to cover I need to start with my PCP.
Have you used Letrozole or any other AI? I wonder if they mess up the hormone levels in the body and parathyroid is getting a hit to catch up with lower estrogen levels. But I am not a doctor.
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Lilly, glad you have a doctor's appointment. If you can see swelling, it may not be parathyroid since they are four tiny glands behind your thyroid. Your thyroid gland is much larger on top of paras and has two portions--one on either side of your throat. Perhaps an ultrasound can figure it out! No, I've never been on an AI. It's a debate whether or not there is a link between BC and thyroid or parathyroid issues. All the best. Let us know what the doctor says!
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I had my thyroid TSH checked and they have changed dramatically. From normal last year and I am currently in borderline being hypothyroid. Also, one side of my thyroid is swollen since 7 weeks ago. I had an ultrasound today and they found some enlarged nodules. I am expecting a call from the doctor since the technician who performed the ultrasound test told me he doesn't have the right or capability to diagnose. I am worried!
Anyone with similar issue? Can breast cancer metastasize to thyroid?
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Lilly, sorry your blood test results have changed so much, and I hope you get good news from the ultrasound. I didn't have much swelling that I remember, but, like anything else, everyone has different symptoms when there are issues. I'm sorry you have to wait for US report, but hope it is something simple. Please let us know how you're doing and if you have questions. Virtual hugs, Ceanna
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Thank you Ceanna.
xoxoxo
Lilly
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Hello, I am on Anastrozole for 6 month. I have been hypothyroid for decades. My recent blood test shows my calcium is a little elevated (10.3) it bothers me because I have the new pain on my lower left side of my back rib cage that started approximately 2 months ago. I noticed this pain when I carried something on my side. This area only hurts when I pressed on it or put pressure on it. It must be a bone pain since its not tender to touch, you have to press the bone to feel the pain. No pain with movement either. My MO is not so concerned. Do any of you have experience this kind of pain in any part of your body while on Anastrozole or AI.
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Anxious, sorry to hear of your high blood calcium. One high test result would be something to track. You may want to ask your doctors to test your blood calcium levels every few months and see if they remain high. Anyone with one reading above normal should be monitored and rechecked. It could be nothing, but if they remain high, ask the docs to test your thyroid and parathyroid hormone levels. If they are off, try to find an endocrinologist who deals only with thyroid and parathyroid, and not one who only deals with diabetes. I'm not familiar with your meds and can't speak to the location of your pain, so hope someone else weighs in here. All the best.
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Anxious, I am sorry to hear this but I can tell your my experience regarding high calcium levels. I stopped calcium supplements few days before I had a second test since the first one showed high increase of calcium levels. Second test was slightly lower once I stopped the supplements. Do you take supplements?
I have pains and swell in different parts of the body that make me worried but I am getting the conclusion that maybe side effects of letrozole. Everybody is different and AI are still updating the list of their side effects.
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Ceanna & Lily - I take Caltrate 600 mg twice a day. My primary doctor ordered a re-test of Calcium in 4 weeks and to take only 1 Caltrate a day.
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Anxious, if I was you I would not take Caltrate at all 4-5 days before the test. Substitute with lots of dairy products. Also drink lots of water. I have a feeling you will be ok.
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Hello everyone,
I have not posted here in a while but I have just read your posts with interest.
If you have high levels of calcium in the blood I would think that it is always prudent to get yourself tested. Please remember however that you need also to get your parathyroid hormone level tested as well, because it is the level of parathyroid hormone that gives you the diagnosis of hyperparathyroidism.
From my own experience, once you have this diagnosis you will be given a sestamibi scan to find out which of the four tiny parathyroid glands have been affected. One of them most likely has a lump, called an adenoma, usually not malignant, sitting on it, and will need to be removed through surgery (a parathyroidectomy). This will cure the problem and the calcium and parathyroid hormone will revert to normal almost immediately. I had this all done in 2009 and have been fine.
I had IDC with triple negative non-hormonal status. Sam52 who posted on this thread had the same surgery at the same time. She had had hormonal breast cancer IDC and she later started her own thread Parathyroid disease and breast cancer in the forum IDC (invasive ductal carcinoma). It is worth reading.
Best wishes
Sylvia
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Go to parathryoid.com - it will talk about issues of re-checking and re-checking calcium if calcium is high, as well as how high calcium can mean hyperparathyroidism even if the parathyroid hormone blood test is normal.... If you truly have hyperparathyroidism, parathyroid.com speaks to this leading to a variation in calcium levels over time - some will be normal, some maybe high normal, some possibly high - if you don't have it then calcium levels tend to remain fairly similar over time. That site was a godsend for me just before I was diagnosed in August 2011. I had my surgery in September 2011. Various docs ignored my "slightly elevated" calcium of 10.3 for years and years which resulted in all kinds of cardiovascular issues among other things... It went up to 10.7 and then 10.8 just before surgery. The last year my calcium has been back in the low 10's - with a recent reading of 10.6. A week later calcium was 9.4 and PTH was 39.6 both of which are very normal. I do think the 4,000 units of Vitamin D3 may be the culprit. My Vitamin D deficiency remained even after the adenoma was removed in 2011. A few weeks ago I decreased my Vitamin D supplement to 3,000 per day. I'll see what happens with blood work next time. I usually have blood work every 4 months though it will be a bit longer until the next round.... I wish you all the best! As others are stressing see an expert, not just the average endocrinologist. Even the brightest of the general endocrinologists do not always know what they don't know....
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I am posting to keep this thread on the first page of Active Topic. Please read if you have concerns about high calcium or parathyroid disease,
Sylvia
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Hello everyone,
I am trying to put this thread to the front again. If you have high calcium in the blood it does not mean necessarily that you have metastases. It can be caused by an overactive parathyroid gland. There seems to be a connection between breast cancer and hyperparathyroidism.
Please check out the forum Not diagnosed with a recurrence or metastases but concerned, in the thread High calcium levels.
Also check out the forum IDC (invasive ductal carcinoma) and the thread Parathyroid disease and breast cancer.
You can easily read both of these threads from the beginning and there is a lot of information in them.
Parathyroid disease is not rare but is underdiagnosed. There are symptoms, moans, bones and groans, but I did not have any of them.
Best wishes
Sylvia
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Hello everyone,
It looks as though this particular thread is not becoming active again.
On the other hand the other thread – in the forum: IDC (Invasive ductal carcinoma) – parathyroid disease and breast cancer has become alive again. If this topic or anything to do with high calcium is of interest to you, please post.
It would be good as well to hear from former posters who are doing well post-parathyroidectomy.
Best wishes to all.
Sylvia xxxx
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Hello everyone,
We need to keep the two threads that I have just updated at the front of the queue. This possible connection between hyperparathyroidism and breast cancer is very interesting. From what I have been reading on the two threads on this subject this also seems to involve the thyroid.
Any posts would be useful to read.
Sylvia
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Hi Sylvia
Was glad to see these posts on high calcium blood levels, hyperparathyroid and thyroid. I have been treating hypothyroid for years now. A TSH is the worst measure to see what shape your thyroid is in. Stop The Thyroid Madness is an excellent resource for all things thyroid. stopthethyroidmadness.com My breast cancer was diagnosed 8/21. Invasive lobular. Surgery, whole breast radiation. I feel very lucky, because all was fairly uneventful. Then AI for 5 weeks and the first 3 were ok. Next 2 weeks were hell!! Stopped the med felt better and then got covid again.
In the meantime, I was getting blood calcium readings in the 10"s. Checked out parathyroid.com. Low and behold the symptom list was ME!!! The site I mentioned is connected to a clinic in Tampa and they are suppose to be the gold standard in surgery. Surgery is the only treatment, as the problem is tumor that grow on the parathyroid(totally different from thyroid) that have to be removed. Had a couple people here have the surgery there. If youre having high calcium labs, GO to that site!!
Karen
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Hello Karen,
I was interested in your recent post in the forum Not Diagnosed With a Recuurence or Metastases but Concerned and in the thread High Blood Calcium Levels whic was started back in 2009 by Ellen Fitz. I posted there very early on along with another member Sam52. I am posting one of my posts on that thread on August 12 2009.
This is the post.
"Hello everyone,
I have not posted here in a while but I have just read your posts with interest.
If you have high levels of calcium in the blood I would think that it is always prudent to get yourself tested. Please remember however that you need also to get your parathyroid hormone level tested as well, because it is the level of parathyroid hormone that gives you the diagnosis of hyperparathyroidism.
From my own experience, once you have this diagnosis you will be given a sestamibi scan to find out which of the four tiny parathyroid glands have been affected. One of them most likely has a lump, called an adenoma, usually not malignant, sitting on it, and will need to be removed through surgery (a parathyroidectomy). This will cure the problem and the calcium and parathyroid hormone will revert to normal almost immediately. I had this all done in 2009 and have been fine.
I had IDC with triple negative non-hormonal status. Sam52 who posted on this thread had the same surgery at the same time. She had had hormonal breast cancer IDC and she later started her own thread Parathyroid disease and breast cancer in the forum IDC (invasive ductal carcinoma). It is worth reading.
Best wishes
Sylvia"
As you can see from this past post, Sam52 and I went through the hyperparathyroidism surgery back then at the same time. She in Oxford and I in Exeter. I have had no further problems all these years on. I do not know what has happened to Sam52 because she stopped posting. I like to think that she is fine.
Sam52 and I did a lot of reading about Swedish research which made a connection between hyperparathyroidism and breast cancer. We did investigate parthyroid.com so we knew the good work they were doing.
I was glad to read that you had got through your breast cancer treatment and that you are fine. Are you actually suffering from hyporthyroidism as your post indicates? My understanding of this is that it is treated through medication, such as thyroxine. How does this impact on your calcium levels?
Reading through some posts in different places recently, I get the impression that posters are putting thyroid and parathyroid problems together and it seems that both problems may be connected to breast cancer.
I shall certainy have a look at the link about thyroid that you have posted.
You should have a look at the thread that Sam52 started after we had both posted on the High Calcium thread. Sam52's thread is in the forum IDC (invasive ductal carcinoma) Parathyroid Disease and Breast Cancer. It became more active than the one mentioned and started by Ellen Fitz.
Reading through some of the posts I get the impression that there is concern about some of the anti-hormonal medication that hormonal positive breast cancer patients are having to take after standard treatment.
I hope this post sorts everything out about my own story. My story began in 2005 when I was diagnosed with triple negative breast cancer and tests showed I had high calcium in the blood. This can be a sign of metastases. My doctors did a parathyroid hormane test and diagnosed this was what I was sufferng from. I had the surgery etc. in 2009 when I was completely recovered from breast cancer. I have had no problems eversince.
Wishing you well.
Sylvia
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Hi Sylvia
I do treat my thyroid and have been successful in doing so. But as you age and have different events in your life, things change and thus your approach has to as well. I have labs done about every 8-12 weeks to see how things are going. This I have a fairly good handle on. Getting labs done this week and have calcium included. Am also touching base with the Tampa facility to see if they think I qualify for surgery. I'm just convinced I do. Have to get this resolved before I can even consider any hormone blocking therapy for the cancer. I'm also very encouraged that so many people who have had the parathyroid surgery have done so well.
Karen
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Hello Everyone,
I am just trying to get back to a more normal routine and revive some of my interests in parathyroid problems.
Let us make an effort to keep this High Calcium thread and the thread entitled Parathyroid disease and breast cancer.
A special hello to Ceanna if you are still participating on the forum. I do hope you are well.
Anyone with any up to date news please post.
With this new format it is not easy to keep things going as it just does not look as homely as it used to and there is too much print work done in advance and so a person does not feel as though they are participating as much.
Best wishes to all.
Sylvia xxxx
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My blood calcium levels go up and down. The first time my doctor had my parathyroid tested and it was normal. When I stop taking my calcium supplements calcium levels go down. My last blood test had high calcium again. I stopped my supplement and am curious if it will go down again on the next blood test
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Hello AJ,
I have just looked at this thread and saw that you posted on August 1st. Are you still looking at this thread and what is happening about your calcium levels that go up and down? You must have been very disappointed not to have received any follow ups from anyone.
This connection between hyperparathyroidism and breast cancer is very important and the thread was very active. Somehow we need to the togetherness back. Let us hope someone will post. I think the parathyroid problem and also triple negative breast cancer need to be kept on the agenda.
Ceeana, what has happened to you?
Best wishes to all. When you go for blood tests get your parathyroid test done as well as your thyroid test.
Sylvia
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@sylviaexmouthuk , my calcium levels have been normal for the past few months.
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Hello AJ,
I was glad to read that your calcium levels have been normal for the past few months. However, please remember that you can have normal calcium blood levels and still have the problem with your parathyroid. An overactive parathyroid is diagnosed by the level of your parathyroid hormones (PTH). My own experience is that when a doctor orders a fuul blood test this does not include a parathyroid hormone test (PTH).
I do not know why this is not done as a matter of routine.
When I was diagnosed with hyperparathyroidism it was because I had high calcium levels and my oncologist thought that this could mean that my breast cancer had spread. She did a parathyroid test and then when I had finished my breast cancer treatment I had to have surgery to remove a non-cancerous adenoma on my lower right parathyroid gland. My breast cancer was on the right side as well.
You will find lots more information about all this on the thread Parathyroid Hormone Disease and Breast Cancer, started by Sam52.
Very best wishes
Sylvia
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