Parathyroid disease and breast cancer
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So first, I realize that I renamed Dr. Norman ( not Dr. Jordan). I have a consult with an endocrinologist on April 1. My MO was not overly concerned but said I should see this specialist. Having read some on parathyroid.org I’m pretty sure this is something needing attentiin
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Hello everyone,
I was just checking to see how this important thread was doing. If there any indication that you may have hyperparathyroidism please get yourself checked out. This is a serious life-threatening condition and should not be ignored. It is easily dealt with through surgery.
Hello Rosie24,
I do hope everything sorted itself out for you and that you will see this post. I see that you are still active on the forum.
I am speaking from experience.
Sylvia
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I just stumbled across this thread I had a parathyroid adenoma removed in 2011 (hyperparathyroidism) and lived on parathyroid.com a couple months before then and some time just after b/c no-one seemed to know what was going on (medical people) - it shouldn't be sooo difficult!!! My calcium about a month ago was 10.6. The week after it was 9.4 with PTH of 39.6 so quite normal. I was diagnosed with DCIS Grade 3 with comedo-necrosis (4.8 or 4.9 cmx2.8cmx1.8cm) 3-4 weeks ago. I don't think we will be surprised if it stays DCIS or there is also IDC found after BMX (August 31).
My calcium has crept up to 10.0, 10.1 and 10.2 the last year or so. One of parathyroid.com's endocrinologists also wondered about my high level of Vitamin D supplementation (prescribed to me) as a possible culprit while also saying that would not explain the 10.6. Additionally I've been taking that level of Vitamin D since 2013 so why all of a sudden would it lead to my calcium blood level creeping up consistently into the 10's. I recently decreased my Vitamin D supplement to 3,000 units per day (on my own) to see if that helps. I saw something else questioning a possible link between hyperparathyroidism and breast cancer - and now this thread... For us it may only be about more closely monitoring both. Hopefully more research will occur before too long to help with prevention for others. Thanks for all the input here!!
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LivinLife, I saw both of your posts--here and the High blood calcium thread. You don't mention what your Vit D. blood level is, and I wonder if it's still low, not high? My Vit D. level didn't finally go up, even on Vit D. until I had the bad parathyroid removed which, for me, was after my LX. Perhaps they can check if another parathyroid has gone bad for you. There are four--how many of yours were taken out in 2011? I also had to switch away from a soybean oil based Vit D to one with flaxseed oil for proper absorption to get my levels in the normal range. PTH levels can vary widely, and be normal sometimes, as did mine, until I had the adenoma removed. Don't let the doctors ignore your high calcium levels!! Best wishes for your surgery next week. Please let us know how you're doing.
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Hi Ceanna, I thought I'd check back and sure enough someone posted. Prior to my parathyroidectomy and before I started any Vitamin D3 supplementation my Vitamin D level was 19. I had my parathyroidectomy a month or so after that. I was told to start 4,000 units of Vitamin D3 at that time. My calcium right after surgery was mid 8's/9 - 3 readings. No idea about Vitamin D at that time - not even sure they ran it. Then I had a 10 and maybe some mid- and upper 9's (calcium) - I don't really remember - some months after surgery which is why I wouldn't go up to 4,000 - for 2 years. I would only go on 2,000. My Vitamin D level stayed in the very low 20's that whole time. I do not know what it was right after surgery before starting any Vitamin D though I came to accept I am Vitamin D deficient regardless of the parathyroidectomy and at the 2 year post-surgery mark agreed to go on the 4,000 because I have osteopenia in my right hip and two other spots that are closing in on that. Given the 10.0-10.2 the last year or so and then the recent 10.6 I dropped my Vitamin D3 supplement to 3,000 a few weeks ago. I don't care what my endocrinologist says. My Vitamin D level was in the mid-50's so even if it drops to 40 with the 3000 I'm good. I'll be interested to see though it likely won't be checked for several months. My rheumatologist is the only one whoever checks it and he canceled my July appointment. I usually see him every 4 months though opted to go longer this time - the DCIS (hopefully that is where things stop) popped up the day I would have seen him so good call on my part to wait longer to see him. Too many appointments....
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I should mention - I still wonder if there's another adenoma lurking in there. No one took me seriously when it was 10.3 for years and it caused me such problems. My current endo - he wasn't my endo during all that - said the adenoma was likely there for 10 years. He really is not impressed with my numbers the last year though did say it is likely more hyperparathyroidism than cancer related.... I do wonder though if it's the high Vitamin D supplement which one of Dr. Norman's (parathyroid.com) surgeons mentioned as a possibility, except for the 10.6. I'd call that a fluke though it was done at Cleveland Clinic - not that they can't make mistakes though I just doubt that...
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LivinLife, you have an interesting background to your story of high calcium. If the high calcium dropped after your 2011 parathyroid surgery and just recently went high and continues there, I would see you wanting to pursue that with your endo or a parathyroid specialist real soon. Realizing you're facing BC surgery and with COVID, that may be difficult, but with your progressing osteopenia, I would want that checked out. My high calcium levels were ignored by an endo for years, I prescribed Vit D. for increasing osteopenia, and it wasn't until several inconclusive tests including sestamibi and ultrasound both missed the adenoma, a parathyroid specialist identified and removed the one errant para, my calcium levels returned to normal during the surgery and have remained normal since. My PTH varied each time I had the test before it's removal--from normal, to low, to high, and is not a good indicator for "normal" para. Since we normally have 4 paras, and you had one out, maybe another has gone bad in recent years. I've not read the site you mention for more about Vit D intake, but 50 is definitely not too high! They have lots of good info about the need for adenoma removal, but I haven't visited the site for other types of info. Vit D helps put calcium where it should be in the bones but wouldn't be helping if the paras are putting it in your blood! I'm two years out from para removal and am due to have a follow up bone scan to see if my osteopenia has stopped progressing, or even, hopefully improving!! COVID has put it on hold for now, but I'm curious to see the results of removing the adenoma!! All the best for your surgery and beyond!
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Ceanna thanks so much for sharing your story, your validation of my situation and feedback! I don't think my current endo will be concerned about anything unless my calcium goes higher and stays there. He is more of the diabetes/thyroid endo.... I only see him once every other year to keep an eye on multiple thyroid nodules. I'm working with an oncologist who is also a hematologist. she finds my entire case quite interesting and is checking into blood work (red cell- related) beyond breast cancer. She may be one I could ask to re-run blood work in the next couple months. I think she may want to follow me even after breast cancer due to erythromelalgia and red cell issues the last year? She is fantastic and I think would be open to something as reasonable as that.
I sooo wish I could go to Tampa - the Norman Parathyroid Center - my insurance doesn't cover though... I drive 4 hours to the Cleveland Clinic Scleroderma Clinic and it's where I decided to go for BMX and will keep my oncologist there as well. My oldest sister had her parathyroidectomy there some years before I had my parathyroidectomy in western PA so I would go to Clevel Cl if needed. I know the name of her surgeon as well. I'd be very comfortable working with him if I could get in to see him at some point.
I feel kind of guilty being in the IDC section though now can't help but check out this parathyroid thread now that I know it's here... Hopefully I don't find myself here for other reasons after my BMX.... I think it could go either way... Initially when I got the call I was told I may need chemo and those kinds of messages still get sent every now and then...
I wish you the best in your journey as well Ceanna!
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I am posting to keep parathyroid disease on the first page of the Active Topics. Please read as well as the High Calcium thread.
Sylvia.
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Can anyone recommend an endocrinologist or hyperparathyroid specialist in NYC?
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Nickel, I'm sorry, I'm not familiar with endos or parathyroid specialists in NYC, but look for someone who deals in both, not an endo who deals with diabetes. Hope someone else can help point you in the right direction. Perhaps we can answer some questions for you, or if you have specific questions, please feel free to send me a private message.
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Hello Nickel,
I just wanted to say that it was my oncologist and breast cancer surgeon that diagnosed my overactive parathyroid gland back in 2005 when I was first diagnosed with breast cancer. They were concerned about high levels of calcium in my blood and had ruled out, through scans etc. any metastases. They did the parathyroid hormone test and diagnosed hyperparathyroidism.
I did not have the surgery for this until I had finished my cancer treatment. I did have the sestamibi test and was told I had an adenoma on the lower right parathyroid gland. My breast cancer surgeon was also an endocrinologist treating all kinds of endocrine problems. She did the surgery and everything went back to normal.
She told me that by the size of the adenoma (non-malignant) it had preceded my breast cancer.
Given subsequent Swedish research I read, I am convinced it caused or played a part in my breast cancer.
You will find details about what happened to me in this thread and the High calcium thread in the forum Not diagnosed with metastases but concerned.
I hope you find a reliable and competent endocrinologist.
Best wishes.
Sylvia
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Hi Sylvia, Thanks for mentioning me. My visit with the endocrinologist ended with him requesting another pth test with other labs, and see him again in 6 months. He considers my case “mild” even with a high pth level of 125. Huh?? Partly because I have no symptoms and I think partly because I’m stage 4 MBC. I’m not going to fight to have surgery, although I’m doing well with scans showing very little to see and feeling good. My calcium levels are back in the 9 range and Vit D is now normal at 49. I’m starting with a new MO next week and will get her take on all of this
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Hello Rosie24,
I do hope you get some satisfaction with resolving your PTH level of 125.
I do know that it is a high PTH level that gives the diagnosis of hyperparathyroidism which takes calcium from your bones and puts it into the blood, sending your blood calcium level up and this can be moderately up or high.
My oncologist was obviously concerned with my high level of calcium, and all scans had shown no metastases, so luckily for me, she and my breast cancer surgeon/endocrinologist tested for high PTH. This was high and I had a sestamibi scan which showed a non-malignant adenoma on the lower right parathyroid gland. This was all cured by surgery. I was told this adenoma had preceded my breast cancer. There is research that indicates a connection between the two.
I had absolutely no symptoms and yet my endocrinologist told me that I had had it for quite a long time. Symptoms are often described as Moans, Bones and Groans.
I did develop osteoporosis after my breast cancer treatment. My tumour status with breast cancer was triple negative.
I do wish you all the very best.
Sylvia
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Hello everyone,
The connection between parathyroid disease is too important to neglect this thread. Please post if you have recently been diagnosed with hyperparathyroidism and also have or had breast cancer and read the posts on here.
Best wishes.
Sylvia
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HI There,
I am new to the patient forum and I came across your topic and wanted to let you know that I had surgery for hyperparathyroidism approximately 10 years ago and was just diagnosed with IDC this week. I would love to know more about your research on this topic.
God Bless and hope you are well!!
Gretchen
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OMGoodness I was diagnosed with hyperparathyroidism with normal calcium in 2012 and still struggle to keep my PTH levels normal with Vit D. I was just diagnosed in Feb with IDC!!
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I think you may be on to something. I hadn't endocrinologist and I have a multi-nodular goiter and a thyroid that runs hyper. At one point I had a PCP who looked at all of my results and said I think I know what's caused your osteoporosis which I developed by the time I was 60 and I have broken six bones and I said what is it? He said you have something going on with the parathyroid. I immediately emailed my Endocrinologist and she said no no I disagree. He's not reading the test results right. I wonder if she was just trying to cover. Perhaps she made an error I don't know I just know that I had osteopenia when I was 50 and I exercised like a fiend and I kept breaking bone after bone on actonel and my akelson also known as calcitonin now I don't know what I can take because I'm a high risk for a lot of these things and would bilateral lymphedema I can't be having a lot of needles in my legs.
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Yugga, glad you were diagnosed and had parathyroid surgery. Sorry, I don't have the research, but personally have the connection between parathyroid adenoma and BC.
Emotional, and purple32, I hope you can get accurate info from your doctors. I had to go years of abnormal (and some normal) PTH and calcium level test results ultrasounds, and sestamibi scan, and several doctors before finding a specialist who found a parathyroid adenoma. Immediately, actually during relatively minor surgery, my calcium level returned to normal and has remained so, PTH has been normal, and a recent followup DEXA scan two years after that surgery, showed an improvement in osteopenia to the point that one hip is now considered in normal range. I hope you pursue this and find out if there is a issue. A found that an endocrinologist who deals in diabetes, is not well versed on parathyroid issues so look for someone who does parathyroids. All the best and ask if you have more questions.
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Ceanna, I’m kind of like you in going a while before having any action taken on high parathormone tests. It’s been about a year for me. My last appointment with my endocrinologist was very short, with him saying I appeared to have no symptoms other than high pth (150 most recently) and only somewhat high calcium, so see you in 6 months. Bone density showed osteopenia in one area, normal for age in others. Could you (or anyone else reading who can help) tell me what symptoms you had? My next follow up is in June and I think maybe I need a new doc, as you said.
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Rosie24
I haven't been too active in the community lately, but wanted to reply to you about parathyroid issues. I posted this awhile back, but it's hard to go thru all the posts. So just in case you didn't see it, let me reiterate that the website parathyroid.com has a ton of great education. Like you, my endo dismissed the symptoms. Fortunately for me, my nurse practitioner and gynecologist both said that something was off. My blood calcium was in the mid-10's for about 18 months, and then I lost 12% of my bone mass in one year. Fortunately for me, I was still in the healthy bone range, however it was not acceptable loss. I also had a normal parathyroid hormone level the entire time.
I downloaded the app available via parathyroid.com after reading the information on the website. It allows you to enter your lab results and readings and it will judge whether you may have an issue. Obviously it is not a diagnosis, nor should it replace one. However, it is a useful tool.
Parathryoid.com is the website of a practice of doctors in Tampa who do nothing but parathyroid work. It's just a wealth of info and may put your mind at ease. I ended up working with that practice and went to Florida (from Maryland) for parathyroid surgery, after having been dismissed by the endo. I had 3 of the 4 glands removed with tumors -- I was very lucky.
I don't know about the connection between BC and parathyroid. I was later diagnosed with stage 1 BC so perhaps there is a connection. However, my main point is that you should not ignore your symptoms and instincts. Parathyroid correction is so simple, but uncorrected can lead to significant health issues for some, so please don't ignore it.
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I am surprised by this and not surprised. I was diagnosed with stage 1A grade 2 1.7cm bc in right breast 13 years ago. Now I have been diagnosed with stage 4 in the bones. I thought I was through with bc after my mastectomy. I also have a 1.9cm thyroid nodule that the doctor is not concerned with because it is smaller than the 5cm which is where they pay attention to it. They say it is inactive, but I wonder if it is associated. I have a nodule on my lung as well but the Oncologist says it is nothing to worry about. It's probably nothing and many people have nodules. Thank you for the information. My mother had horrible osteoporosis and eventually loss the ability to walk due to fractures. She had thyroid problems and was on medication for years. I think it is worth investigation and have set an intake with the Mayo Clinic. I am wishing you the best of luck in your journey.
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Rosie, it might be good to get with a parathyroid specialist. Even then, it was difficult after additional testing to finally discover the adenoma. The four paras sit behind the thyroid and they have a completely different function and testing than the thyroid. I went for a number of years with varying calcium and PTH levels that the endo said he was "watching" (apparently PTH will widely vary even if you have problems), but like MDRR, my DEXA scan showed bone loss in some areas which would not be normal for my age and level of activity. I finally had to force the issue with the endocrinologist (even though he claimed to deal with parathyroid issues and not just diabetes) and got referred to a para specialist. One of the things you will see often mentioned as parathyroid symptoms is "bones, stones, groans, moans, and psychic overtones. I had worsening bone density, minor kidney function problem, and various aches. Remember, high calcium in your circulating blood can accelerate heart problems, so you might want to call a major medical center in your area to see who deals with parathyroids and do the simple surgery (I wouldn't suggest a general surgeon because of the skill needed to access these tiny glands behind the thyroid and are crisscrossed with blood vessels and nerves!). My surgery was fairly easy and I had immediate lower levels of blood calcium while still in surgery!! Quite amazing! Now my calcium and PTH levels never are abnormal.
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MDRR and Ceanna, Thanks for the push to get more assertive. I do believe I need more action and less monitoring. I recently had a liver ablation and have been a stable stage 4, yet still stage 4 for a couple years now. I’m in ongoing treatment and have regular blood draws and scans, so part of me wants to agree with the endocrinologist and just watch this. (I’ve also wondered if being stage 4 has some bearing on the endo being less aggressive with me.). But I also want to help myself, especially since I’ve been at a good point cancer-wise and the pth is fixable with what sounds like a not difficult surgery.
MDRR, yes, I’ve been to the Dr. Norman parathyroid.com site quite a bit since the red flags went up about a year ago. I learned a lot there. It’s also a very different take on the seriousness of parathyroid disease than I get from my endo and even primary care doc and MO. None of them seem to have any urgency about my numbers. I know they don’t specialize in parathyroid disease and he does.
So I made a plan. I’ll get my second Covid vaccine in early April, get back to my systemic treatment after a break for the ablation and vaccine. In April I’llmake an appointment with an endocrine specialist or even an endocrine surgeon I’ve seen on my major hospital site. I’m hoping by June I’ll have something underway and can cancel my appt with the other doc. Thanks for your responses. I also heard from Sylvia and maybe someone else (sorry I don’t remember) a few months ago and all of you are so helpful. 🌺
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Rosie, glad to hear you are planning for a specialist visit. I hope you find answers, and hopefully it's not something that requires surgery, but glad you found an endo specialist and surgeon. Hope you can get an appointment to fit your timeline. Please keep us updated! All the best!
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Hello everyone,
I am posting to say that I was so pleased to see this thread come alive again. Sam52, who started the thread, would be so pleased. I do not know what has happened to her. As I have said before, she and I met quite by accident on bc.org in 2009. She was already a member and had been diagnosed with IDC in 2001. I had been diagnosed in 2005 with IDC triple negative, but was not on the forum until 2009, which I discovered when I had finished my treatment for breast cancer and was looking for information about hyperparathyroidism and thinking about having the necessary surgery. Sam and I corresponded, originally on the thread High Calcium levels, in the forum Not diagnosed with metastases, but concerned. You can easily read the posts there as the thread is just nine pages long.
I wanted to say a special hello to Rosie24 and to say that I hope she will get everything sorted out in the very near future. As I have said before, hyperparathyroidism is not rare, but it is under-diagnosed. I think that testing the parathyroid hormone level should be part of routine blood tests. I do not understand why it is not done. Hyperparathyroidism is a life-threatening event.
Keep in touch and let us know how you get on.
It is now nearly twelve year ago that I had the surgery to remove one parathyroid gland which was very large and I am surprised I was not aware of any symptoms. My breast cancer surgeon experienced endocrinologist in parathyroid surgery told me that judging by the size of the non malignant adenoma I had had it for some time and that it had definitely preceded the breast cancer. I think it was no coincidence that my breast cancer was in the right breast and the adenoma was on the lower right parathyroid gland.
Best wishes to all.
Sylvia xxxx
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This is my first post on bc.org in the High Calcium thread and I thought it would be useful to post it here as the High calcium thread does not seem to be reviving.
I am going to post another of my posts from there, talking about having had surgery to remove the adenoma. I had my surgery on November 9th 2009. I realise now that I should not have waited that long but I needed to recover from the breast cancer treatment and had put it all out of my mind and the hospital had not reminded me. I had to contact them and remind them!
"I was very interested in the discussion about a connection between breast cancer and hyperparathyroidism.
In 2005 I was diagnosed with triple negative breast cancer (ER- PR- Her2-). At the same time as I was diagnosed with the breast cancer I was also diagnosed with hyperparathyroidism. This was picked up through elevated calcium in the blood.
I was told by my oncologist, consultant surgeon (also my endocrinologist) that they would get me through my breast cancer, and then think about the hyperparathyroidism. In the meantime they advised me to have regular blood tests to monitor the calcium and parathyroid hormone level. For the breast cancer I had six months of chemo, mastectomy, removal of seven lymph nodes (only the sentinel node affected) and radiotherapy. There was no follow up treatment after this as drugs such as tamoxifen and arimidex are of no use in non-hormonal breast cancers.
To date I have had regular calcium and PTH blood tests. In February 2009 while having a blood test check up, I asked the nurse to measure my height and discovered that in three years since 2006 I had lost two inches off my height. I had a DEXA scan and was diagnosed with osteoporosis. I was told that treatment for osteoporosis (calcium, vit D and bisphosphonates) do not work for osteoporosis if you have hyperparathyroidism.
A few months ago I had a special test to look at the four parathyroid glands and was told that I had one gland enlarged with an adenoma. This adenoma is on my lower right parathyroid gland and I thought immediately there was a connection with the right breast cancer and that the link was calcium. I have now read research that appears to equate breast cancer with hyperparathyroidism, although the experts cannot decide which comes first. I feel that it is the hyperparathyroidism causing the breast cancer, because the consultant cannot tell you how long you have had the hyperparathyroidism. Research also suggests that the cause of both may be mass X-rays carried out on children in the 1950s. However, this cannot explain the cases in younger women.
I have been advised to have surgery for removal of the adenoma, but cannot decide because of the possible side effects. It seems like a no-win situation. There are pros and cons for surgery and for not having surgery. I have read a lot about malignancies following parathyroidectomy.
I would love to hear your comments."
Best wishes.
Sylvia xxxx
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This is the post that I wrote on November 15th 2009, just after my parathyroid surgery. I thought it would be of interest to you.
"I just wanted to let you and others concerned know that I had the full surgery to remove one of my parathyroid glands and the adenoma on it on Wednesday November 11th. I was able to leave the hospital the next day and am now recovering at home. The high calcium level became normal immediately and now appears to have stabilised in the middle of the normal range. I have had very little discomfort following the surgery. My voice is completely normal and I am just very tired from the anaesthetic. My consultant told me the other three glands looked normal and that they must now be kicking in. I have a small 2 inch incision mark on the neck. I have a follow up consultation with the consultant in three weeks. I am hoping to find out what my parathyroid level is now, because all the tests have been about calcium levels. She did tell me that the adenoma was big and that she thought I had had it for some time and before the breast cancer. I am consequently still convinced that there is a connection between hyperparathyroidism and the development of breast cancer. I tend to think that the hyperparathyroidism has caused the breast cancer, with the connection being calcium deposits. I shall now concentrate on trying to cure my osteoporosis.
I hope that this message will reassure everyone thinking about having a parathyroidectomy. I look forward to any comments you might have and am still hoping to hear from anyone who has triple negative breast cancer and hyperparathyroidism."
I hope this is of interest to you.
Best wishes.
Sylvia xxxx
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Hello everyone,
I have just gone through the nine pages of the High calcium thread to refresh my memory. I noticed that on page 8 there is a good diagram of the parathyroid area, which I posted, and there is another good diagram on page 9 that Ceanna posted which are both very useful. I tried putting my one onto this thread but it did not work. Have a look at pages 8 & 9 on the other thread if you are interested.
Best wishes.
Sylvia xxxx
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Sylvia, thanks for the posts. Here are the images I had posted of the parathyroids on the High Calcium thread. The four glands sit behind the thryroid--two on each side.
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