Parathyroid disease and breast cancer
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Oh which symptoms GreenEyes?
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I had 2 symptoms I did not realize were related....hot flashes and horrible body oder that has got significantly worse over the last few years. Anytime I exersised it was intense.
I have not had one hot flash since day one and the body oder was back to normal by the time I was allowed to run a week later.Also had anxiety, depression, EXSTREAM fatigue, nausea, irregular bowls, mussle/joint/bone pain---walking around Walmart and I would have excruciating foot pain. Just a huge over mentally better. lol
Did I mention I was exhausted!?!?!? hahaha
I'm 36 years old....this stuff was not normal. I am in the US, crapy Obamacare insurance. Happen to go to a new primary care doctor that test PTH (which I had never heard of), he told me I had hyperparathryoid disease---"but don't worry it dosn't cause any symptoms".
He thought I had sleep apnea. lmbo I self referred to and endo surgen at Huntsman Cancer Institure in Salt Lake. Met him once, had a couple more tests and was schduled for surgery. Total time was about 6 weeks and was that long because I had to push it out for scheduling. HTH
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Hello GreenEyes81,
I was surprised to read your latest and the list of symptoms that you have attributed to an overactive parathyroid gland, hyperparathyroidism.
I had no symptoms at all and was very surprised that my endocrinologist/breast cancer consultant told me that judging by the size of the non-malignant adenoma on my lower right parathyroid gland, I had had it for quite some time.
I had read up all the research about the connection between breast cancer and hyperparathyroidism and the debate about which one caused the other. I asked my breast cancer consultant what she thought about this. She told me that the hyperparathyroidism had definitely preceded the breast cancer.
In the research I have done I did read that both diseases could have been caused by something else, such as chest x-rays during childhood.
I do not know whether we shall ever know the exact answer but what we can say is that there seems to be quite a lot of people with breast cancer and hyperparathyroidism.
My breast cancer consultant surgeon said that symptoms are 'moans, bones and groans'. To me that seems a bit vague and can apply to many things.
What we really need is for blood tests, routine ones, to include parathyroid hormone levels. That will give a diagnosis.
I am sorry about all your problems and hope you will continue to make progress.
Best wishes
Sylvia
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Thank you for all your insight into this! i came across this website when searching parathyroid issues. I have a parathyroid adenoma (confirmed by MRI) and I am debating to have surgery in the US (I live in Canada). I have had recent genetic testing for CHEK2 mutation ( most maternal relatives that I know of have this mutation) but I don't have results yet. I believe it will take 3 months to get results.
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Hello Canuck76,
I was interested to read your post and I do hope you will be able to bring your parathyroid issues to a successful conclusion. You said you are debating whether to have surgery in the US, although you live in Canada. I was wondering why you wanted to go to the US. I lived in Canada from 1977 to the end of 1993, so I know about the health system in Canada and how it is similar to the one we have in the UK. Is there too much waiting in Canada?
My breast cancer surgeon, who is also an endocrinologist, told me that surgery was the only way to cure hyperparathyroidism and that to be walking around with it was dangerous, as you could end up in a coma. I had a large adenoma and she said it was lucky that they had discovered it by chance as I had had it for a long time. I had no symptoms as far as I could tell.
According to how it was treated here and what I was told, you need a sestamibi scan to identify which of the four parathyroid glands are affected. Since I was diagnosed at the same time as my breast cancer, I had the surgery after I had recovered from all the cancer treatment. I had the surgery in 2009 in November, having been diagnosed with it by accident when I was diagnosed with breast cancer in June 2005. It looks as though my consultant forgot about it and I had to remind her. I had the surgery one day and left the hospital the next. I did not have the minimal invasive but Sam52 on this thread did. I have had no problems since.
I was interested in the genetic testing for CHEK2 mutation. I have never heard of this and was wondering if you could explain it more to me. Did you have this done in Canada?
I do hope to hear from you as I am very interested in parathyroid problems, especially hyperparathyroid problems and anything associated with them.
Where are you in Canada? I lived in Quebec province, Montreal, Ontario Province, Ottawa and London, Ontario.
Very best wishes.
Sylvia
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Hi Sylvia,
Good to hear from you, yes the wait in Canada has been long. I started to have issues about four years ago and pretty much diagnosed myself ! Hard to believe right? I am a medical professional myself so I am very proactive in my health and research a lot. My doctors have been absolutely no help - 2 endocrinologists, a general internist , a few gps and a few radiologists. They have all missed the boat so to speak and have put it off to my “lifestyle” sleep apnea or diet. They have completely ignored my suggestions and any ideas about what it is. I have had all forms of imaging including sestamibi which is supposed to be for the most part the best test for imaging parathyroid adenomas. My sestamibi was negative but MRI picked it up.
There has been a lot of cancer in my family that I am just learning about so with the family history I was offered some genetic services. It is not offered to most as there is some criteria that needs to be met but with the prevalence/penetrence , they offered it to me. Apparently one of my cousins found out about this already and had this testing done before me which made it easier for me to seek genetic testing. As far as I know most of the family has this CHEK 2 mutation which is a tumour suppressor gene - issues in this gene will allow tumours to form and not shut off.
The surgery they do in Canada for parathyroid disease is a exploratory surgery- no MIRP as last I checked. My question is what comes first, parathyroid disease or cancer ? I imagine an argument could be made either way. I forgot to mention - CHEK 2 is correlated with breast, prostate and colon cancers mainly. I’ve read possibly thyroid-maybe that actually means Parathyroid! One question for you if I may ask- any root canals or dental issues on your Adenoma side? p.S. I live in western canada
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Sylvia
I forgot to mention that in the US they do MIRP and even a trans-oral surgery now. I read in Florida the surgery is about 16k CAD. I think I have lost faith in the system here and can’t wait anymore. The parathyroid tremors/vibrations are scary. The severe joint pain starts in late spring for me, digestive issues are constant, brain fog and memory loss are constant as well. The adenoma is compressive around my trachea- I believe it’s caused the sleep apnea. Hope you are well and I am willing to speak anytime on parathyroid disease.
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Hello Canuck76,
I was most interested to read your posts.
I am sorry to read that you have been waiting for four years. That is way too long. If it is any consolation mine went on for quite some time as well. As I have said before, it was diagnosed quite by accident by the oncologist who was worried about high calcium serum in the blood, thought my breast cancer had spread to the bones because of that symptom, and decided to do the parathyroid hormone test.
It was also by chance that my breast cancer consultant surgeon was also an endocrinologist so could back up the diagnosis. I was told I definitely needed to have surgery, but they would wait until I had gone through and recovered from all the cancer treatment.
They actually forgot about the parathyroid problem and I had to remind them about it, so I actually went from 2005 when diagnosed with both breast cancer and hyperparathyroidism to 2009 when I finally had the surgery. With sam52 we went through all this together and are absolutely convinced of the connection between hyperparathyroidism and breast cancer. I even showed a copy of a research paper to the endocrinologist, which she said she found interesting.
The question is what come first? In my own case, as I have said, I was told the adenoma on my lower right parathyroid had definitely come first. According to what I have read, the other possibility is that a third factor caused both. One theory was x-rays given in childhood. I remember that we regularly got chest x-rays at school. That has been put forward as a factor. Do you have any ideas on that?
I have read in the past that the thyroid and its problems may also be a factor in breast cancer. On my thread about TNBC, we do have a woman who has had breast cancer and is now going through treatment for cancer to the thyroid. She has had surgery to remove the cancer, has somehow kept her parathyroids and the last we heard she was having radioactive iodine treatment and was to be kept in isolation. I am quite concerned about her because we have not heard from her since that treatment started early this month.
I am really astonished that all those 'experts' have not been of any help.
I do not know what exactly you do as a medical professional, but I do believe that we can read our own bodies and that we should take responsibility for them.
I do remember seeing my now retired GP when all this with the parathyroid was going on, because I had to see him to keep an eye on the blood levels. He told me that hyperparathyroidism was very rare and that I was the first case in all of his career that he had seen. I do not think it is rare, but I do think it is under-diagnosed because a person may not be aware of symptoms and parathyroid hormone levels are not part of routine blood tests. The calcium level may be only slightly elevated, and is thus dismissed by the doctors. Doctors do not like patients questioning their 'expertise'.
I was surprised that the sestamibi scan did not show anything. Mine clearly did, but the adenoma was very large, but fortunately not malignant. The endocrinologist did tell me that a malignant adenoma was rare.
I was very interested in the fact that you were able to get some genetic services. It is quite difficult to get them here, unless you have breast cancer, for example, at a young age and they want ot test you for the BRCA1 or BRCA2 faulty gene. Although there has been a lot of cancer in my family, especially on my mother's side, as far as I know, on the female relatives I and my maternal grandmother are the only ones to have had breast cancer.
I had never heard of the CHEK2 mutation. Is this something recent for which they are testing. I do remember asking one of the medical team about genes etc. and she mentioned p58 I think it was and a process of methylation. It was some years ago now, so it is a bit vague in my mind.
I do remember also reading that your parathyroid glands are not necessarily sitting on your thyroid and that they can be elsewhere. Does that make sense? Is that why nothing perhaps showed up on your sestamibi? I wonder about that because the woman on our thread said that her cancerous thyroid gland had been removed and so I asked what had happened to the parathyroid glands and I do not think I got an answer.
My breast cancer consultant/endocrinologist would not do minimal invasive surgery because she said she wanted to check and have a look at the three others. Minimal invasive was done sam52 at the well known hospital in Oxford, UK and that was back in 2009.
I was intrigued by your question about root canals or dental issues on the adenoma side. I was wondering why my breast cancer was in the right breast, and strangely the adenoma that had to be removed was the lower right side one. I do have dental problems even though I have always looked after my teeth. I have problems with gum disease and was told in 2002 by my dentist here in Devon that it was genetic and would have been inherited from my parents.
I had root canal work in Canada on a front left tooth. I have since read that root canal work is lethal and not advised.
I shall write more later about all this.
Please keep in touch. I often wonder, even now, what might be happening to the three other parathyroid glands, but have been told that I am 'cured' and that blood tests etc. are not necessary.
Best wishes.
Sylvia
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Good Morning
I definitely have some theories on this. First off , I do have to declare my job in medical is a x-ray technologist so it weighs heavily on my mind about the possible connection. I definitely believe this may be a contributing factor. My dad had radiation for acne on his skin way back as a young man as well. This may be why I am facing such resistance from the medical community on diagnosis and treatment due to my employment.
Could the combination of inflammation from the root canal and radiation be the cause ?? I had the root canal tested by a holistic dentist(recommended by a functional medicine Dr) and it tested low for bacteria and toxicity. I will be getting it out ASAP. Another item I had read about possible gut issues such as celiac or gluten sensitivity that causes malabsorption issues which causes the gland(s) to activate. Maybe.
In my research of parathyroid disease I read all about sestamibi scans. I believe it did not show up on the delayed washout due to the particular cellular makeup of the tumour/gland. Perhaps. Either way I finally proved my case that it was there.
I am not sure why CHEK2 was specifically tested for - the geneticist was really curious as to why that gene in particular was tested. She wanted more info on that but I could not provide. There was one cousin who tested positive for BRCA2
I will keep striving for some answers and good talking to you. I hope we can all help each other out as we are all in this together. I forgot to mention that I am a man so thinking about breast cancer was not even on my radar. I hope the lady you speak of is well and gets back to the forum with some positives.
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Thank you for this thread and all of these posts. I knew I could count on the members of the bc.org site to help me when I had questions or needed information. I am grateful.
This week, at my 6 month check-up, my new MO informed me that I had high calcium levels (just over 11 I believe - I will get all my number on Monday) in my blood and called me back for another test. The second test came back with high levels (at 10.9). Now I go in Monday for the PTH test - which I insisted on after reading so many of the posts on this thread. The Norman Institute has convinced me that I have hyperparathyroid, despite the fact that I don't have but maybe 2 of the "symptoms" they list. The MO wants to send me in for a bone scan. I will agree to that, because I had a bone scan prior to the two AI's (anastrozole and femara) that I was on for just under a year total but could not tolerate (crippled me and I thought I was dying). I want to see if my bones are thinning.
My mother had bc and parathyroid surgery to remove a tumor.
The NP that assists my MO was quite put-off by me insisting the PTH test, explaining that high calcium could be caused by many things. After reading the Norman Institute website, I believe she is not knowledgeable enough to question my requests. (note: I learned early on that I had to be an advocate for myself and research and question and seek other perspectives with all of this bc treatment - as with any medical treatment). I do not take AI's any longer due to the SEVERE side effects and that has not made the MO happy either.
I have searched my local area (Phoenix-Mesa-Scottsdale) for a surgeon who specializes in parathyroid surgery and cannot find anyone with the level of expertise I am comfortable with - especially after reading the Norman Institute information. I went to the American Association of Clinical Endocrinologists and searched for "parathyroid surgeons" in my area, I searched local hospitals, and have asked for referrals from three of my doctors. I'm not finding anyone who I would conclude "specializes" in parathyroid surgery - although many of them perform the procedure along with surgery for gallbladder, kidney, etc. as a general surgeon.
To those of you who have had the surgery, I'm wondering:
A. How did you find your expert?
B. Did you contact the Norman Institute and if so, did you end up going there? (I'm not independently wealthy, but I'm trying to figure out how I can afford this if it comes to that)
C. If your calcium readings were similar to mine, 11 and 10.9, despite your PTH reading, did you discover you had a tumor? I understand that even the sestamibi scan is not 100% reliable.
D. If you have hyperparathyroid and they found a tumor, did you have the symptoms at all?
Thank you for any feedback you can provide.
P.S. I have recently been going through several dental procedures because my teeth were breaking and I had to have 2 root canals. No question in my mind this is all connected.
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Hello 2ndGenBCA,
That was a very interesting post. You need to find out what the bone scan is that you are going to have. Is it a DEXA scan to find out about osteoporosis or is it a bone nuclide scan to find out whether your high calcium levels are caused by spread to the bones of your breast cancer?
I had high calcium levels in the blood and the oncologist did the parathyroid hormone level in the blood to rule out spread to the bones. It was the parathyroid hormone level that ruled out spread and diagnosed hyperparathyroidism.
I also had the bone nuclide scan before and after my breast cancer treatment and that was clear.
It is well known that cancer treatment and the Als you have been taking cause osteoporosis. I had a DEXA scan after my cancer treatment and had osteoporosis. Hyperparathyroidism can also take calcium from the bones into the blood but I did not have osteoporosis before the cancer treatment, when I discovered I had lost height and tested positive for osteoporosis.
Follow your gut feelings and let us know how you do. You do, indeed, have to be your own advocate.
I am in the UK but I am going to have a look at the Norman Institute website. Have you looked at parathyroid.com?
Best wishes.
Sylvia xx
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Hello Sylvia,
Thank you - I will ask those questions about the scan.
Yes, www.parathyroid.com is the Norman Center - I said Norman Institute, which is not technically correct - sorry. That is the site that I learned of from this thread and I am very grateful.
I appreciate your thoughts and support and will report back when I know more about the scan and the PTH report.
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Canuck76- Hi, I want to clarify an adenoma will not be benign and then turn to cancer. It is one or the other. If you not have PTH levels in the thousands....it is very unlikly it is cancer. However, after actually having cancer.....hyperparathyroid was way more invasive on my quality of life than cancer ever was.
2ndGenBCA- Are you able to travel to Salt Lake? I self referred, but had to get approved first. They reviewed my labs and the fact I had breast cancer may have helped. I was also going to the same hospital for some cancer stuff. I wont it was perfect, not a 100% happy with the doctor....but it's all bedside manor stuff. The guy KNOWS what he is doing, does these ALL the time. I definalty had a positive/succesful surgery. My f/u appointment was at home in Montana. I only had to make 2 trips to Salt Lake to get it done. PM if you are interested in more info.
Also, with out your PTH level resutls, you really don't know if you have hyperparathyroid. There are other issues that cause these problems, even high PTH levels. It's more of looking at the big picture, not just one or two sets of numbers. As for scans.....if you do not have a HIGHLY SKILLED tech doing the scan, they will not find the tumor--it does not mateer they type of scan/imaging. Canuck76, as an xray tech I am sure you would understand that.
Mine was found by an ultrasound, but I also stayed in Salt Lake to get done by another doctor (not a tech) that does these all the time instead of going home and get a tech that may have never done one. 2ndGenBCA- My answers
A. How did you find your expert?
Google, then confirmed coverage with my insurance and started making phone calls. Huntsman is the top cancer hospital in the nation, I figured they didn't hire just anyone.
B. Did you contact the Norman Institute and if so, did you end up going there? (I'm not independently wealthy, but I'm trying to figure out how I can afford this if it comes to that)
Nope---their website is VERY informative and was greet. Personally, I felt like they were full of themselves. Even if I could afford it, I don't think I personally would go there. An egotistical doctor is just as bad as a unpracticed one in my opinion.
C. If your calcium readings were similar to mine, 11 and 10.9, despite your PTH reading, did you discover you had a tumor? I understand that even the sestamibi scan is not 100% reliable.
My PTH and calcium levels were fund at the same time, so don't have an answer for this. My surgion did say, I had a tumor and would need surgery at my first appointment as long as my 24 hour urine catch was normal. The ultrasound was just so he knew what direction to go looking ahead of time.
D. If you have hyperparathyroid and they found a tumor, did you have the symptoms at all?
LOTS of symptoms, which was the consideration for surgery. Per my surgeon, if i was 60 and had no symptoms....no need for surgery. At that age, its not as big of a deal unless you have symtoms. I'm 36 and with symptoms. Because of that, I needed it out because after years of it...I would have ireversiable health issues and it will kill you in 30 years. Sorry to be blunt, but if you are 60....you are probebly not going to live long enough for it to actually kill you. There is a lot to look at...not just calcuim and PTH.
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I'll offer another perspective, in that I did go to the Norman Parathyroid Clinic and had my parathyroid adenoma and a thyroid nodule removed. I did so because I could not get anyone locally to act within any reasonable amount of time. My results were pretty unquestionable in terms of both Ca and PTH levels. I also had very low vitamin D and was diagnosed with osteopenia by DEXA scan.
I don't regret my decision. I found I had to advocate for myself and I was not willing to go with an inexperienced surgeon or wait unreasonable periods of time. I felt taken care of by going to a speciality clinic, and would do it again.
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Thank you GreenEyes81 and Triscuit.
I have a lot to consider and I will continue to investigate - hope to make a decision as soon as I have more data.
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Hello Canuck76,
I would be very interested to know any details you have about dental problems and parathyroid problems, even breast cancer problems. I know that breast cancer treatment affects the mouth and causes dry mouth, mouth ulcers, etc. I have had a lot of problems with gums, especially after my chemotherapy treatment. We are warned about mouth problems and told not to have any dental treatment during our cancer treatment, because of fear of infection.
All the talk lately is about the gut biome and the mouth biome and health problems because of modern diet and how it damages healthy bacteria. There is a very good book about this, entitled The Dental Diet - the surprising link between your teeth, real food and life-changing natural health, by Dr Steven Lin. It makes very interesting reading and traces the history of the mouth through the centuries etc.
It seems we all need to have some fermented foods, concentrate on foods in their natural state and stay away from junk and processed foods, not to mention sugar.
Best wishes
Sylvia
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Triscuit, I’m wondering if your thyroid nodule was cancerous?
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No, marijen, my nodule was benign. I apparently have 2 more small ones now and an "area" of something, that is being followed.
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I have two nodules that I will get biopsied soon and I didn’t know they would remove them if they are benign. I guess your doctor did that because he was already in there? I hate the worry about them. Thanks triscuit.
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Yes, it was removed because he was already in there, but it was also quite big. So it may depend on size and how quickly it is growing over time if they decide to take out a benign one after biopsy. I know my endocrinologist doesn't seem concerned at all with the two tiny ones I have now, not even big enough to biopsy.
Good luck with your upcoming biopsy.
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Hello everyone,
I think we need to try to keep this thread going, as it seems to be the best one and the most active one about the association between breast cancer and hyperparathyroidism. There are two other threads going in different forums but they have both been inactive for quite some time, even though efforts are made to keep them going. Trying to go to three different forums gets muddly and confusing.
I shall always be interested in this association, even though I had surgery etc. back in November 2009 and was declared 'cured'. I would love to know whether it was the main factor in my being diagnosed with breast cancer. How do we know that the remaining three parathyroid glands have not started to malfunction? In the UK we are not tested for parathyroid hormone and doctors seem to dismiss high calcium levels. I regularly take Solgar calcium supplements for cancer treatment induced osteoporosis, but in one post I read elsewhere it said that doing this increases calcium in the blood. It is meant to be going in the bones.
Wishing every one all the best.
Sylvia xxxx
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Sylvia,
I agree on keeping the thread going. When I learn more about my situation I am happy to share. I hope others will, too.
I was glad to find information on this thread as it is helping me investigate my situation and get medical help from experts cited.
Thank you.
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Just WOW, @greeneyes81. You are certainly getting a lot of excercise jumping to some pretty negative conclusions, i.e. the Norman Group being egotistical and full of themselves.
I found almost instant relief from my symptoms after they found/removed two fairly large adeomas, both on the right side as was my breast cancer. I was very impressed with their level of professionalism and my level of care. Even my MO was super impressed and is now referring other patients to them. He was super skeptical of my self diagnosing but was willing to speak to them by phone when I needed his permission for them to treat me soon after finishing radiation.
I live about three hours south of Tampa so was able to drive up one afternoon, stay in a nearby hotel overnight and check into their surgical suite at 5am the next morning. The staff was quick and professional prepping me. My surgeon and anesthesiologist were both easy to work with and very knowledgeable.
Dr Norman came to speak to me about 10 minutes before my surgery. It turns out he oversees EACH and EVERY surgery done in the center. He first asked me why I had had so many lab tests and I told him because I had had five months of chemo followed by bmx surgery and then six weeks of ragdiation. He asked me which Dr (MO, Surgeon or Radiologist) had diagnosed me. I told him I had diagnosed myself and had then worked with Dr Parrack (through lab tests ordered and question/answer session over the phone.). He was incredulous that none of my doctors had been alarmed by week after week of blood calcium levels in the mid 10 range. He said that anyone over 50 should never have calcium levels above 9.
Dr Norman, Dr Parrack nor any of the other Drs I interacted with subsequently w/regard to being given information on test results, etc. nor any of the staff ever exhibited any indication of being egotistical or full of themselves. They really exhibited a genuine caring and desire to help me and any other person who needs help.
Additionally, while there is no proof of a correlation between hyperparathyroidism and breast cancer, there certainly is anecdotal evidence and so at 36 you should be very cognizant of that and be super vigilant where your health is concerned.
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Hello mmbNaplesFL,
I read your recent post with great interest and was glad to know that all had gone well with your surgery for hyperparathyroidism and the removal of two fairly large adenomas on the right side where your breast cancer was. You have probably read my story and I had a large adenoma removed on the right side, as was my breast cancer. The hyperparathyroidism was diagnosed by accident at the same time as my breast cancer and I really believe there is some kind of association between the two. The adenoma preceded the breast cancer, according to my consultant.
I had learned a lot back in 2009 when I had the surgery at my hospital here in the UK from reading parathyroid.com.
I cannot understand why anyone would be negative about the Norman Group and the surgery they do.
I have been saying for a long time that hyperparathyroidism is NOT rare but under-diagnosed. Here in the UK testing for PTH is not part of routine blood tests and as for calcium levels in these tests you are told it is within the 'normal' range or slightly elevated and nothing to worry about!
I have been reading all about symptoms of hyperparathyroidism but I am not aware that I really had any. I was diagnosed with breast cancer in June 2005, the oncologist picked up on high calcium levels, thought there might be spread to the bone and did the PTH test. I was then diagnosed with hyperparathyroidism. I went through all my breast cancer treatment and forgot about hyperparathyroidism. In 2009 I reminded the hospital about this and they had also forgotten. In November 2009 I had the surgery etc. and was declared cured.
I think you are very lucky to have the Norman Group.
If I had not been diagnosed with breast cancer I would probably not have been diagnosed with hyperparathyroidism by accident.
I do wonder about two things. Could my other three parathyroids malfunction at some point due to adenomas? How would I know if I have no symptoms? I ask this because I also wonder why I had an adenoma form on the lower right parathyroid gland in the first place. Since I was told this adenoma predated the breast cancer, I am wondering whether the adenoma formed because of the breast cancer that may have been developing over the years in my body. What I want to know is what caused the adenoma? I hope this makes sense.
I have just bought a book entitled Excess Calcium Disease – What you should know about high blood calcium, parathyroid hormone and hyperparathyroidism, by Peter A Galbraith, published 2015. It was the most recent book I could find on the subject. I think it is quite easy to read and to the point. Has anyone else read it?
Please keep this thread going as well as the High Calcium thread in the forum Not diagnosed with recurrence or metastases but concerned.
Wishing everyone well and saying if you have any doubts get your PTH and calcium levels tested and take action if there are problems with this.
Best wishes.
Sylvia
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mmbNaplesFL- Not everyone has a positive expirence at Tampa, it is very easy to find alternative feedback online. I am happy you had a great expirence and are feeling well. They are simply not the only place to go and get great care. I am also not the only one that is not impressed with the "better than everyone else" push they make.
There was zero "jumping to conculusions"-----Just watching their videos and reading their website made it very clear to myself. Perhaps since you were so close you didn't do as much research online?
I gave my personal expirence and feedback---everyone has to figure out what is best for them and move forward. I am extreamly diligent, thus the reason my breast cancer was even found to begin with.
You are welcome to your opinions, just as everyone else it. Respect goes a long ways.
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Hello everyone,
I am just popping in to say that with all the information I gave about my own experience with a hyperparathyroidism diagnosis and the surgery I had, that I forgot to say something about the fact that I had to have an examination with an Ear, Nose and Throat consultant to ascertain that my vocal chords were all functioning properly before my surgery. I was told that my voice could be affected. That concerned me quite a bit but I had no choice but to have the surgery. That is the only way to get a cure. It came back to me as was reading the excellent book that I mentioned in a previous post.
I do think we need to keep this thread peaceful. Sam52 started this to inform people about hyperparathyroidism and the association with breast cancer. We should all know how to get a diagnosis and what the surgery involves. We shall all make up our own minds where we shall have the surgery done. In most cases I would think it would be at the hospital nearest to us and with a surgeon who has experience in performing this operation.
I was very lucky to have a breast cancer consultant surgeon who performed my mastectomy and who was also en endocrinologist with experience in performing parathyroidectomies.
Sam52 was in London at the time and chose an excellent hospital in Oxford where they were doing minimal invasive surgery. She was fine after it all.
I wanted to be with my surgeon who preferred to do full surgery and everything was fine.
In all of this I wish I had had some symptoms of what I was walking around with. I do not know how long it had been going on. I feel very strongly that PTH should be tested along with calcium at routine blood tests. I have learned that GPs know next to nothing about hyperparathyroidism and do not know how to diagnose it. With me all this happened in 2005 and 2009, so I hope there has been some improvement since then.
It seems that there are lots of people walking around with un-diagnosed hyperparathyroidism. It is not a rare thing and very common in women. According to the book I am reading it is as much as one in fifty women over 50. Chronic fatigue can be a symptom, so I am wondering whether ME could in fact be a parathyroid problem.
Remember, stones (kidney), bones (osteoporosis), groans (stomach problems), and moans (irritability, low moods etc.).
Let us all keep friendly and give support.
Best wishes.
Sylvia xxxx
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hi Sylvia — thanks for all your postings, information and well wishes.
Hard to remember but I think it was this thread that pushed me to pursue diagnosis of hyperparathyroidism when I found out my calcium levels were too high.
My doctors, of course, were focused on my cancer treatment and only I knew how bad I felt and could see that I had five of the first eight symptoms listed on the parathyroid.com website. I was convinced that I felt so bad not only from the effects of the chemo/surgery/radiation but also from the parathyroid disease.
I went to a series of doctors back in 2007 for those symptoms and got nowhere. I finally went to a top-rated endocrinologist in town who diagnosed me with depression and prescribed Lexapro ! Yes, I was depressed because I felt so crummy, not the other way around, so I did not need medication for it. Eventually I just learned to live with my symptoms. Of course I now feel like that Dr really let me down because my cancer might have been discovered more quickly if he had found my parathyroid disease.
I have been told that I had both the cancer and the PT condition for many years, absolutely no way to know which one came first or maybe they developed together?
Anecdotally, I think it was the PT tumors. It was well AFTER I had given up on diagnosing those symptoms that my pet chihuahua started acting differently. She had always been my dog and followed me from room to room, ending up in the evening under my covers sleeping by my knees while I watched tv.
At some point (not even sure of what year but maybe around 2010) she would no longer sit beside me in bed. If I physically put her there, she would immediately leave. She became my husband's dog, only staying in the bed when he was in it with her.
I wish I would have picked up on why she was doing that, but of course any doctor would have thought I was nuts anyway and the fact that mammography and ultrasound didn't show my cancer, even when it was very extensive, didn't help either.
About one month into the chemo regimen my dog came back to me in the bed,sleeping quietly by my side for hours at a time, no husband in the bed. Seems like the cancer was sufficiently killed in order to not scare her away. It gives me comfort now when she nestles up to my head and sleeps (yes, she had abandoned sleeping under the cover.). I feel like I will know by her actions if my cancer returns. She now sleeps at the top of the bed, between our heads, sometimes closer to me, sometimes closer to hubby
I have heard other stories (a couple maybe) of pets diagnosing cancer but I don't recall what they did to alert their owners.
I pray daily, for all women who have or have had cancer and I pray for all women that no one ever again gets cancer.
Take care everyone, Michele
EDITS
While trying to find some of the negative reviews for The Norman Group/Tampa I am finding some interesting websites/articles.
Here is an interesting article that links to the parathyroid.com (Dr Norman) only for information, no rating by the author given. The author explains his diagnosis process andthe rather large surgery he had to remove his adenoma.
https://www.theatlantic.com/health/archive/2016/04/garry-shandling-hyperparathyroidism/476445/
Another very interesting website https://parathyroidpeeps.com/our-stories-2/
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Thanks for listing those sites, mmbNaples Fl. I will look at them in a minute. I just wanted to say that over a year ago, I began to be diagnosed with high blood calcium, and have the hurting bones too. From Arimidex, I thought, and after trying Femara and Tamoxifen, I am now back on Arimidex. But even though the nodes by ultrasound are enlarged, and I have been to see the endocrinologist at my cancer treatment center, they scoff at my self diagnosis. I am pretty bummed, and haven't had a blood test in over a year, and am looking forward to having another. i can't remember what else. i was unusual, in that my PTH was low normal, and when I wrote to the docs at Norman, they said i could be an anomaly, that most people don't have it that low? I forget. blood calcium was 10.2, 10.4, 10.5, and 10.8. PTH was 22. But my Vit d unsupplemented was 55, and then a month later, nothing different, but it had changed to 35. weird. I downloaded the calcium pro app to my phone, put in my data, and it says 'possible' on the chances of having hyperparathyroidism, based on the data I input.
sylviaexmouthuk,ok, I just bought that book you mentioned, and gonna start dinner, then start reading it! It was on amazon for less than 5 dollars if you have a kindle! Thanks for the heads up!
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Hello Tomboy,
I hope you get to read the book I mentioned as it will show you about calcium levels and how doctors are not reading them correctly and are not differentiating levels according to age. I am not a doctor but it seems to me your calcium ranges are high, but I do not know your age.
Your PTH and vitamin D levels seem strange.
Read the book and get a second opinion.
Fond thoughts.
Sylvia xxxx
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Hello mmbNaplesFL,
It was interesting to read your post and thank you for the links. I shall have a look at them at the weekend.
Best wishes
Sylvia xxxx
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