High Blood Calcium Levels

sandilee

Hi Sylvia,

  I'm another one who had hyperparathyroidism along with my BC.  My BC was found in 2007, and I had my parathyroid removed in 2009, when my onc noticed that my calcium blood levels had risen.  At that time, he didn't think my cancer had returned. Two years later, my mets were found. 

   Because the calcium in the blood is regulated by the parathyroid glands, it has always been my hypothesis that the BC came first, and but how can I know. My onc feels that my original stage 1 cancer had been with me for 8 years or so before we found it, and I have no reason to think that I had hyperparathyroidism for very long.  It's a mystery, for sure, and I agree that there might be a connection.  I also had/have osteoporisis, which may also cause a need for extra calcium to be released. It may be that the bone loss is the culprit, and not the cancer.  

sylviaexmouthuk

Hello luckypenny

I was glad to know that your calcium level is now back to the normal range.

I take calcium supplements for osteoporosis, but I do wonder whether it is the right thing to do. There has been a lot of publicity in the UK about calcium supplements and the development of heart disease.

Best wishes.
Sylvia

sylviaexmouthuk

Hello sandilee

I do remember reading your posts on the other thread about hyperparathyroidism.

I do wonder whether we shall ever find out for certain whether there is a connection between breast cancer and hyperparathyroidism. I think there is but I do not know which one comes first. My breast cancer consultant/endocrinologist told me that the adenoma on one of my parathyroid glands was of a size that indicated I had had it long before my breast cancer started to develop and she said that she thought the breast cancer tumour had started developing about four years prior to the tumour showing up in 2005. I sent her all the research papers from Sweden on this matter. We have to remember there may be something dating back to childhood that has been the cause of both. I do not think we shall ever have an answer.

How are you now with the mets that was diagnosed in 2011? What treatment have you had and where was the mets? I hope you are doing well.

As for the hyperparathyroidism I feel that there should be regular blood tests to keep an eye on levels of parathyroid hormone as well as calcium blood level. After all, there are tests for levels of calcium and thyroid hormone in ordinary full blood tests. When I asked my GP to test my parathyroid hormone level he looked at me as if I were asking to go to the moon! He said he had never had a case of hyperparathyroidism in his whole career, and he was nearing retirement. I think it is more common than we are led to believe and is considered rare because the medical establishment does not test for it. My medical team tested for it after the BC diagnosis because of elevated calcium which they thought might indicate mets to the bones. The bone nucleide scan must have come back clear.

What we do know is that hyperparathyroidism causes osteoporosis. We also know that breast cancer treatment causes osteoporosis. We know why hyperparathyroidism causes osteoporosis. It is because it takes calcium out of the bones into the bloodstream. I am not sure why breast cancer treatment causes osteoporosis, although chemotherapy and radiotherapy probably damage the bones. All I know is that I only had loss of height (one consequence of osteoporosis) after the breast cancer treatment. It is difficult to know what to think.

I see from your details that you had the more commonly diagnosed breast cancer of IDC with ER+. Do you know whether you were strongly ER+? I ask this because I was wondering whether you have been on Tamoxifen and/or Arimidex. I was diagnosed with triple negative breast cancer.

Wishing you well
Sylvia

sylviaexmouthuk

Hello everyone,

I just popped in to see if anything was happening on this important thread. High calcium levels are serious and not something to be ignored. High calcium blood levels may indicate spread to the bones or hyperparathyroidism if accompanied by high parathyroid hormone levels.

Please keep this thread active.

Best wishes,

Sylvia.

paml

Hi sylviaexmouthuk

I am glad you bumped this topic back up on the boards because I have an interesting story to tell. Back in July, I was told that my calcium had jumped up to 10.7. All other blood test were normal. The doctor suspected parahyperthyroidism so I was sent to my endocrinolgist. She did a scan and in fact found a spot on the thyroid gland. I was sent to a surgeon to remove the growth on the thyroid. Because I was a breast cancer survivor, he wanted to do a bone scan before surgery to make sure I did not have bone metastasis. I was reluctant but went ahead. To make a long story short, the bone scan came back fine but they found issues with my left kidney( oh boy) Now I am dealing with a 10 cm growth on my left kidney.  I am terrified and want to let everyone know that high calcium is indeed a serious issue. I can't believe I have to deal with this again. 

keep fighting girls

TKSit

My MO left a message last week that my calcium level is 10.4 and wants to recheck in 2 weeks. He did not seem worried about it, but the more I read about it, the more scared I get! I do have thyroid issues & I am on Synthroid and T3. An ultrasound I had years ago did show a small noncancerous lesion on my thyroid. So maybe it is a parathyroid issue? I have been VERY dizzy latey & just not feeling well. Any input from all you wise women out there?

paml-So sorry you are going thru this. What is the next step for you? Are the doing a kidney ultrasound? Great news about the bone scan tho!

paml

Hi TKSit

I see a urologist tomorrow which will discuss a biopsy and hopefully removal of this beast.  

Hope your are feeling better soon and all issues with dizziness disappear.

take care

sylviaexmouthuk

Hello paml

I was very interested to read your post.

I think we have to be very careful not to mix up the thyroid gland and the parathyroid gland.

There are four parathyroid glands, which are the size of a pea and they sit on the thyroid gland.

Anyone of these four parathyroid glands can have a non malignant tumour on them, known as an adenoma. Apparently these adenomas are very rarely malignant.

An over-active parathyroid gland causes calcium to leach into the blood stream from the bones and this results in high levels of calcium in the blood and can cause osteoporosis. High calcium levels are not sufficient to give a diagnosis of an over-active parathyroid gland. You need to get your parathyroid hormone (PTH) level tested to get a diagnosis.

In order to find out whether you have any adenomas on your parathyroid glands, you need to have a special scan, known as a sestamibi scan, which will show up any adenomas.

If any are detected, you will need to have surgery to remove this. You can have full surgery under anaesthetic or a minimal invasive surgery in which you are intubated.

After this surgery with any adenomas removed, your calcium levels in the blood and parathyroid hormone levels will quickly return to normal and you are cured.

It is very important not to mix up the parathyroid glands with the thyroid gland. Parathyroid glands control calcium, thyroid glands do not.

Over-active thyroid glands or under-active ones have different symptoms and cause different effects. Here in the UK, when you have routine blood tests, you are tested for your thyroid and your thyroxine levels are looked at. With thyroid problems you can go on medication, I think, but for parathyroid problems you cannot and your parathyroid hormone level is not examined as part of a routine blood test.

When I was diagnosed with hyperparathyroidism, at the same time as invasive ductal carcinoma, with TNBC, I was told that hyperparathyroidism was rare. In fact, my GP who was nearing retirement said that he had never had a case in all of his years of practise.

I do wonder whether it is as rare as is believed or whether it is thought of as rare because people do not get routine testing.

If I had not been diagnosed with breast cancer, I would never have found out that I had hyperparathyroidism. My consultant told me that judging by the size of the adenoma she removed, I had had it for a long time and she said she thought it preceded the breast cancer which she thought had been going through my body for ten years prior to diagnosis in 2005. There is some research that believes there is a connection between hyperparathyroidism and breast cancer, but not definite which one comes first. It could also be apparently both of them being caused by something like X-rays in childhood.

Your consultant was right to do a bone scan, known as a bone nucleide scan, to make sure there was no spread to the bones. I also had that scan.

I do hope that everything will be OK with your left kidney.

I know that my consultant for my breast cancer, who is also an endocrinologist, spoke to me about primary hyperparathyroidism, which is what I had, and secondary hyperparathyroidism, which is different and I know that the kidneys were involved. You might want to ask your endocrinologist about this.

I do wish you all the very best and be sure to post to let us know what is happening.

I do think everyone should have routine blood tests to keep a check on their parathyroid hormone, to know whether they have hyperparathyroidism or hypoparathyroidism.

Good luck.

Sylvia xxxx

lightandwind

My blood calcium has been creeping up for the last 4 months each time i see the onc. Yesterday's test read 10.1.  I am taking femara which I'm learning can cause metabolic issues with calcium, leading to hypercalcemia. So...I'm hoping that is what it is. If not, it could be my vita d supplementation. I take 6,000 to 8,000 IUs daily. i didn't take any today. I can feel the excess calcium in my body lately though and haven't felt well for awhile. I've been peeing a lot and tested my urine pH with the pH strips and it was off the charts alkaline, I guess from calcium. I know about the parathyroid too, so maybe that could be it. It could also be bone mets which is of course my biggest worry. My appt w/ onc is on wednesday. I guess we'll be ruling things out.

sylviaexmouthuk

Hello lightandwind

I have just noticed your post from November 12^th and I was wondering how you are. You do need to find out the cause of the hyperglycaemia. It could be connected to an over active parathyroid gland, in which case you need to get your PTH level tested (parathyroid hormone level). If you look back on the posts on this thread, you will find quite a lot of information about this from me and sam52. An over active parathyroid causes calcium to leach from the bones into the blood stream and can cause osteoporosis.

How did you get on with your oncologist on Wednesday November 14^th? I hope you had good news.

Please let me know how you got on.

Best wishes.

Sylvia

sylviaexmouthuk

Hello everyone,

If you are interested in high calcium level and possible causes,please keep this thread going.

Best wishes, Sylvia.

riverhorse

Lightwind



Check with your onc. I was taking 5000 d3 a day and my calcium rose to 10.3. My onc had me reduce the d to 1000 and stop calcium supplements. In 4 weeks my calcium was at 9.9.



Best

Sue

TKSit

I had same experience as Sue. Blood calcium result at 10.8. I did some reading before my labs were rechecked in 2 weeks and reduced my Viactin calcium chew from 2 to 1 per day. Calcium level was decreased to 8.2 at recheck. What a relief!

sylviaexmouthuk

Hello everyone

I have just read the latest post with interest. I find it of concern that we are being told to take calcium supplements for problems such as osteoporosis, but that these supplements appear to be resulting in high calcium levels in the blood. They are supposed to be putting calcium in the bones. I was wondering why this was happening. Is it because the calcium is not being absorbed? I know that here in the UK doctors are prescribing calcium carbonate and my information is our bodies cannot absorb this kind of calcium. I buy my own calcium supplements of calcium citrate, which is better absorbed. You need to take vitamin D and magnesium (citrate) with the calcium.

I feel concerned when I take the calcium because of all the news we have had about calcium supplements causing heart disease.

Any comments are welcome.

Best wishes

Sylvia

riverhorse

If you do some googling, you will find that taking high levels of vitamin D3 can increase calcium absorbtion and thus lead to higher serum calcium levels.  My onc told me to keep taking the D3 at 1000 units but to stop the calcium.  I know there is a school of thought that calcium supplements are not so helpful.   My vitamin D level went from a 25 to a 78 while I was taking the 5000 units -- apparently too high for me. 

Sue

sylviaexmouthuk

Hello everyone

It is true that we have to be very vigilant about calcium supplements.

I think the best website for this is www.parathyroid.com. Have a look at it, especially the section on high calcium.

High levels of calcium or even slightly elevated ones need to be investigated. Apparently most of them are caused by an over-active parathyroid gland. You need to get your parathyroid hormone level tested through a blood test. All the details you need are on www.parathyroid.com.

Best wishes.

Sylvia.

icandothis

Hey, Sylvia.

I wanted to say that I talked to my endocrinologist about web sites, because I have osteoporosis, but extremely variable parathyroid, Vitamin D, and calcium.

There is evidently a conflict in the endocrinology community about asymptomatic hypercalcaemia, and the authors of the hyperparathyroid.com web site are at one extreme of the debate.

Another newish website is http://emedicine.medscape.com/article/127351-overview#aw2aab6b4

It seems to be a little more middle of the road.

PS - am going for a scan next week - since I lost 11% at my hips over 2 years ago.
I'll stay in touch

sylviaexmouthuk

Hello ICanDoThis

I was interested in your post. I know that you have to be careful about websites on the internet, but in my own case I really listened to my breast cancer surgeon who is also an endocrinologist and has a lot of experience. She will always go that extra mile and I really trust her.

She diagnosed my hyperparathyroidism at the same time as my triple negative breast cancer back in 2005. She told me that by the size of the non-malignant adenoma on my upper right parathyroid gland (same side as my breast cancer), that it had been there before my breast cancer started. She told me that after my breast cancer treatment was over and that I was fully recovered that I would need to have surgery to remove the adenoma and that then I would be considered cured of my hyperparathyroidism and that the parathyroid hormone and calcium would normalise, and that this would be quick.

I had general anaesthetic and full surgery in 2009. She explained to me why she did not do minimal invasive surgery. I had the surgery one day and left the hospital the next and my parathyroid hormone and calcium were already normalising. I had no bad effects whatsoever and everything has remained normal to date.

I had a DEXA scan before this surgery and osteoporosis was confirmed. Four months later I had another DEXA scan and there was a slight improvement. In our health system I have not been allowed to have another DEXA scan since then, but I am going to push for one now. Apparently osteoporosis caused by hyperparathyroidism is reversible in most cases. I am not sure what will happen in my own case as my osteoporosis has probably been compounded by the chemotherapy and radiotherapy from my breast cancer treatment.

I do believe my endocrinologist and parathyroid.com when they say that the only way to treat and cure hyperparathyroidism is through surgery. All the time you delay, as I did for a while, the adenoma will continue to grow and the parathyroid hormone will increase or be variable as it tries to deal with the calcium that is leaching from the bones into the blood stream. The only function of the four parathyroid glands is to control the level of calcium in the body, and once one or more of the glands gets an adenoma the parathyroid gland can no longer control the parathyroid hormone. Often the other three have gone dormant, but start to function once the adenoma has been removed.

I had a sestamibi scan before surgery which enables the endocrinologist to know exactly where the four parathyroid glands were located. My endocrinologist did the full surgery because she liked to look at the other three as well. I have no scar on my neck where the surgery was done and my voice was not affected.

By the way, apparently if you have osteoporosis as a result of hyperparathyroidism, bisphosphonates are of no use. I would not take them anyway. I am dealing with my osteoporosis with calcium supplements, magnesium and vitamin D. I am cautious about the calcium supplements as I think they may do more harm than good.

I do not know if you measure parathyroid hormone in the same way as in the UK, but here the normal range of PTH is 1.2 to 7.6. Mine was way above that before surgery. My calcium was only slightly elevated but that is just as bad as it being high.

I hope this will help.

Best wishes.

Sylvia

icandothis

I am pretty sure they measure parathyroid differently here - in Sept, we did bloodwork that showed my parathyroid to be 117, my calcium to be normal. When my parathyoid gets to normal, my calcium is elevated. I do fall into the group that parathyroid.com calls unusual, and recommends additional testing for.

I had stopped supplemental calcium, because of everything I had read. My DEXA scans were abominable

Endo asked me to go back on calcium supplementation. We reran everything in November - Calcium was up - but still normal, D was up, and parathyroid was still above normal, but lower. We did the 24 hr urine, and I am excreting calcium (although 2 yrs ago I wasn't)

Doing the scan to see if that is what's going on.

If I do have a correctible parathyroid tumor, then things will be easier. If I don't, then we have to keep on supplementing rigorously, and see if we can get things stable.

I just suggested an alternative website, because it includes discussions that make more sense for someone with values like mine.

sylviaexmouthuk

Hello Sue

I have just read your post and was interested to know what your parathyroid hormone level was. I did a conversion to see what 117 would be according to the UK way of calculating and I think it comes to 33. Mine was 17 before the surgery.

I do hope you will be able to get this all sorted out.

I do not know what to say about calcium supplements. I know that when I went for the second DEXA scan I was told to take calcium supplements and that I could get them on the National Health Service. I pointed out that these calcium supplements were made of calcium carbonate (chalk) and that humans could not absorb them. I was told that I was right but they were prescribed because they were cheap! I buy my own supplements made by Solgar and they contain calcium phosphate which is more easily absorbed. The Solgar supplements are also balanced with vitamin D, magnesium and vitamin K. I take just one a day because of all the evidence out there about calcium supplements and heart disease etc. It is strange that in countries where they do not eat dairy products that there is no osteoporosis. I have also read that we cannot absorb calcium from dairy products and I do not touch them because of this and because of their possible association with the development of breast cancer because of IGF.

I do sincerely hope you will have good news from your next DEXA scan. In the US how often are you allowed to have these scans?

Thank you very much for suggesting an alternative website. I have looked at it and printed some sheets to read tomorrow.

Wishing you well.

Sylvia.

icandothis

I am having a semastibi (spelling?) scan of my parathyroid. I will appreciate your good thoughts, even though I know that the tumors are benign, I really don't like hospitals. It would be ideal if something showed up, because then it could be fixed. I just hate having to dose myself with all kinds of stuff.

It's just - I should not have osteoporosis without some kind of underlying condition - I'm big, tall, strong, and heavy. I come from a family of professional athletes - and played on 4 varsity teams myself as a teenager. There should not be a dainty bone in my body.

And I agree 100% about calcum carbonate - I take calcium citrate, also D3, magnesium, and K2. We could go bankrupt buying my supplements, because I am also on CoQ10, and a regular multi-vitamin.

Will be talking to you

Sue

sylviaexmouthuk

Hello Sue

There is nothing to be afraid of with the sestamibi scan. It just takes a bit of time and is used to locate the position of the four parathyroid glands and which one or ones are malfunctioning due to an adenoma.

There are all kinds of chronic illnesses that result in osteoporosis. Of course we know about hyperparathyroidism and breast cancer treatment, but there are many others. Taking steroids also cause osteoporosis. If you look at the following link http://www.nof.org/articles/5 there is a long list of diseases and conditions that may cause bone loss, in fact that is the title of the article.

Another interesting website is Health Central and the link is:

http://www.healthcentral.com/breast-cancer/c/9847/10652/cancer?ic=2602

I am in fact taking calcium citrate as well and getting calcium phosphate from drinking enriched fresh soy milk. I agree about the supplements we are taking. They are expensive and I keep reading they are not doing us any good and not helping our bones. I am also taking a multivitamin and CoQ10 from time to time, but it is so expensive here. Are we supposed to taking it for our bones?

Wishing you good luck.

Sylvia xxxx

sylviaexmouthuk

Please keep this thread going. High blood calcium levels should always be checked out, as should ones that are erratic.

Sylvia

icandothis

Reporting back on my sestimibi results - I have hyperparathyroidism.

However, everybody was so sure there was nothing wrong - I went ahead and had my Prolia (denosumub) injection, and now I have to wait until the spring for surgery.

It's so nice to not have one of those undefined things that is obviously causing problems, but no one knows what it is.
I have to admit that I was the one who likely caused my delay in diagnosis - I should have been taking the calcium supplements on a regular basis - problems would have shown up more quickly.

I hope this info helps someone

sylviaexmouthuk

Hello Sue,

I was glad to know that you have now been given a definite diagnososis and that it is hyperparathyroidism. This diagnosis did not surprise me as I am convinced that this illness is very undiagnosed.

Can you explain what the injection of Prolia is for and what it is supposed to do. I ask this because my endocrinologist was emphatic that there was nothing to treat hyperparathyroidism and that you needed surgery to remove an adenoma, and are then cured.

Why do you have to wait for spring for surgery? That seems a long time and while you wait you will have calcium going from your bones to the blood and your osteoporosis will progress. That is how I see it. Keep well and take a look at the thread Parathyroid disease and Breast Cancer. It is in the Forum IDC (Invasive Ductal Carcinoma).

Thinking of you.

Sylvia

sylviaexmouthuk

Hello again Sue

I have just looked up about Prolia (denosumab - a monoclonal antibody). My medical team has never mentioned this to stop bone loss in osteoporosis. Please check out the side effects.

The link is:

http://en.wikipedia.org/wiki/Denosumab

Sylvia

sam52

Hi Sue......Just a word of warning about taking calcium supplements if you  have hyperparathyroidism......it is inadvisable since your calcium levels will already be elevated, and has apparently been linked to a small risk of stroke. Please look at www.parathyroid.com for very thorough information about the disease and also about the surgery.

I also had a parathyroid adenoma removed by a minimally invasive procedure, and found it all very easy.

I wish you all the best.

sylviaexmouthuk

Hello sam52 and Sue

I have just read the link that Sue provided and must say I found it somewhat wordy and feel that it is about time the medical profession started writing out research in ways that are easily understood by most people, especially with so many using the internet for information.

It seems to me that what they have established is simply that women who have hyperparathyroidism (and remember there will be many who do not know they have it) and then develop breast cancer have the same survival rates from their cancer as those women who do not have hyperparathyroidism and develop breast cancer.

What the study does not show is whether there is a link between having hyperparathyroidism and developing breast cancer and why hyperparathyroidism should cause breast cancer. Is this your interpretation?

I know, if I believe my breast cancer consultant/endocrinologist, that my hyperparathyroidism preceded my breast cancer, even though they were diagnosed at the same time. She told me that she was deciding this on the size of the adenoma that she removed from the upper right parathyroid gland. She said that the size of that adenoma showed her that I had had hyperparathyroidism for some time. She told me that the breast cancer tumour had probably started about 2002 and it was removed in 2005. By the way, the adenoma that was removed was 2.5 cms in size.

If we refer to the Swedish research I seem to remember it said hyperparathyroidism and breast cancer development might be connected but it could be an unknown factor causing both, such as x-rays in childhood.

I am still thinking about the Prolia injection and whether it could do more harm than good. What do you think, sam52? If you have a look at it on the internet and read what it does and the side effects, I think you might be concerned.

My own humble opinion is that somehow my undetected hyperparathyroidism and what it was doing to my calcium was somehow connected to my breast cancer. The other factor seems to be low vitamin D. Since we are not regularly tested how do we know what the levels are? All I can say is that I did ask at the hospital to have my vitamin D level tested, and I think that was after the breast cancer treatment and before the surgery to remove the adenoma, and I was told my level was excellent and even had a letter from the consultant saying that the person who had tested it had told her I should be congratulated on my excellent level of vitamin D!!! In the words of Alice, things get curious and curiouser.

Best wishes.

Sylvia

sylviaexmouthuk

Hello everyone,

I was just checking to see if anything was going on with this important thread.

Please try to keep it on the front pages.

Best Wishes, Sylvia.

sylviaexmouthuk

Hello ICanDoThis,

I was wondering whether you are still viewing the two threads about hyperparathyroidism.

I hope you had a good Christmas.

Best Wishes,

Sylvia.