POSSIBLE Parathyroid Disorder? Help needed if possible please??

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My Mother whom is 79 yrs old is suffering from Nausea and uncontrollable shaking of arms & legs. After having approx 10 blood tests since September, and after many of the GP's saying that she should take fybogel for constipation, and then anti depressants (Good Lord), they finally said it was more than likely down to abnormally high levels of calcium leaking into her blood. We were quite relieved to have found something that finally explained the things she was experiencing. After having waited quite a long time for this diagnosis, she has JUST been referred as URGENT to an Endocrinologist Consultant. I managed to call and talk to him, and he said that although the GP's had marked her file as URGENT, after looking at her charts, he thought that the levels of calcium in her blood were NOT sufficiently high in order to cause the problems she was currently experiencing, and also that it would be approx 9 months before he saw her with an appointment. I asked to go private, BUT no private appointments!! He said we should go back to the GP's to say that it must be something else!! I find this ALL quite unbelievable, really and iF you go back to the GP's, what can you hope to accomplish, absolutely nothing but frustration, absolute frustration! Anyways, was hoping that there would be someone out there whom would be able to help in ANYWAYS as to IF my Mother could be suffering from a sort of Parathyroid Disorder, or does it sound as though this may not be the cause? ANY HELP WOULD BE MUCH APPRECIATED? Many thanks from a concerned son.

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  • Posted

    Hi, sorry your mother is not doing well. I would suggest you make an appointment with your GP and get a printout of all recent blood work and other tests and findings. Then make an appointment with an another endocrinologist consultant at a private hospital.

    You could also add her levels (Ca, parathyroid hormone, etc) by replying to your own post. Maybe someone can comment.

    Btw, small doses of antidepressants may be used to treat conditions other than depression.

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    • Posted

      Hi Dan,

      Many thanks for your reply & suggestions, much appreciated!

      Should we be able to request what you mention from the GP without too much hassle/problem?

      We do have a right to the information, is that correct?

      Regards,

      Chris

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    • Posted

      Hi, I would deal with the GP directly and not with the practice receptionist. Your mother has a right to access her medical records. I am sure your GP will be helpful and it is very easy for her/him to print out a few documents.

      Your mother could also apply to access her medical records online. To find out more, search for NHS GP online services. To access your mothers online record you have to fill out a form. It is a good idea to bring your (and your mothers) photo ID to the appointment as your identity will have to be checked.

      Btw, in some patients the parathyroid hormone level may be raised due to Vit D deficiency. To find out more, search for secondary hyperparathyroidism.

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  • Posted

    Please go to parathyroid.com, read this information. I had what was called "normal" calcium levels, but I had a lot of the symptoms on the parathyroid website. It turns out all 4 parathyroid glands were tumors. I had my surgery at the Norman parathyroid center. Hope this helps, God bless.

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    • Posted

      Thank you Cris for your email and information provided.

      I'm looking at all the information on the website provided and trying to put something together logistically ref to where I go next.

      My Mum gets good days, like the previous 2 days, and then all of a sudden WHAM, the symptoms mentioned on the website appear, and nobody can put a finger on the problem that seems to do do this every other day! Bit nervous waiting to call today to see what kind of night she has had, and how the morning has started!

      I've actually made the decision to move back from Asia next week in order to look after her coz she just cant do this all herself!!

      Anyways, from what I have been reading on the website information, it seems to be that the Calcium levels could be OK one day, and that's why maybe the blood tests (Assuming it would'nt be a full blood test as most GP's don't do that these days, not unless you request it, and most people won't) might NOT show whats happening, because on that particular day that the blood test has been done, the calcium has NOT been acting up etc!!

      THEN, on a day, which could be maybe yesterday, or today when I call this morning, because she is feeling absolutely awful in terms if feeling (just ill) as she would describe it, it MAYBE today that the Calcium levels are extremely high, BUT because there is no blood test today, this would of course not be able to be detected, and THAT is why I'm assuming the GP's, even the Consultant Encrinologists, are NOT able to detect the condition themselves??

      You maybe EXTREMELY lucky and have the blood test carried out on the same day you are feeling absolutely awful, and then they are able to detect that the Calcium levels are in the abnormal range etc!

      IS WHAT I'M SAYING MAKING SENSE CRIS?

      IS THIS WHY A LOT OF GP'S AND CONSULTANTS ARE 'FOOLED' BY NOT MAKING THE DIAGNOSIS OF "HYPERPARATHYROIDISM"?

      The reason I ask, is that, as mentioned in my initial post, My Mother has been feeling this way for quite some time now, and after having many blood tests, the same results came back ALL the time of 'everything was OK', and we just could'nt work out as to what the problem was!

      After the last blood test a few weeks ago, she was called by the surgery to come to an appointment asap, something that never really kind of happens at our surgery!

      They said that she had elevated levels of calcium, and I'm assuming they detected these abnormal levels (because) she happened to have her blood test on a day that these calcium levels were high (as mentioned above), SO this diagnosis had been more luck than judgement, without sounding too negative!!

      Anyways, the Encrinogist says the levels are NOT that high to cause the problems, BUT after reading the website information, there's days where it may show the levels of calcium of just over normal, quite a bit over normal, and then HEAVILY over normal!!

      The blood tests have more than likely shown the levels to be NOT high enough for him to act immediately, BUT then the next day, my Mum may have a HEAVY attack of calcium release, and of which IF it were shown in the charts to the Encrinogist, then maybe he would have given an appointment much, much, earlier than the 9 months we now seem to be faced with!!

      ANYWAYS CRIS, AFTER ALL MY BABBLING ON, IS THERE ANY OTHER ADVICE YOU WOULD RECOMMEND AT THIS MOMENT?

      WHERE DO I GO FROM HERE WHEN THEY DON'T SEE THE CALCIUM LEVELS HIGH ENOUGH IN ORDER TO RUSH THINGS THROUGH?

      Appreciate any help or advice you are able to help with?

      Kindest regards,

      Chris Perse

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    • Posted

      Hello Chris, the pth and the calcium should always be checked together. My pth was in the low 50's and my calcium was usually in the very low 10's, but according to the Norman parathyroid center for my age, my calcium level was high. I was 51 and anyone my age and over should NOT have a calcium level of 10 or over. Every doctor I went to kept telling me my levels were normal, but they weren't normal for my age range, and ultimately all 4 of my parathyroid glands were tumors and 3 and 1/2 were removed. As I found out, not all endocrinologists were familiar with hyperparathyroidism, they had heard of it but they also thought my pth and calcium levels were in normal range, and could not help me with the multitude of symptoms that I was having. Maybe you can call the Norman parathyroid center in Tampa Fl, and get some advisement if you are completely unable to get any help where you are. Hope this helps!

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  • Posted

    My experience of this disease, and I've had a lot, is that GPs, endocrinologists and surgeons do not in general understand hyperparathyroidism (HPT). You can have your mother's blood checked at a private clinic. The two most important tests are her calcium (ionised calcium level is the best check) and parathyroid hormone levels and you should get these checked as a matter of urgency unless you already have test results for these. If these are out of range then find a good local surgeon who understands HPT and get referred to him/her.

    Your other urgent step should be to log onto Sally Bally's Facebook site where you will find a wealth of information and get fantastic support.

    http://hyperparathyroidukactionforchange.blogspot.com/

    Good luck and keep trying - you'll end up knowing more than most doctors about this disease.

    Alan.

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    • Posted

      Thank you Alan for your email and information provided.

      I'm looking at all the information on the website provided and trying to put something together logistically ref to where I go next.

      My Mum gets good days, like the previous 2 days, and then all of a sudden WHAM, the symptoms mentioned on the website appear, and nobody can put a finger on the problem that seems to do do this every other day! Bit nervous waiting to call today to see what kind of night she has had, and how the morning has started!

      I've actually made the decision to move back from Asia next week in order to look after her coz she just cant do this all herself!!

      Anyways, from what I have been reading on the website information, it seems to be that the Calcium levels could be OK one day, and that's why maybe the blood tests (Assuming it would'nt be a full blood test as most GP's don't do that these days, not unless you request it, and most people won't) might NOT show whats happening, because on that particular day that the blood test has been done, the calcium has NOT been acting up etc!!

      THEN, on a day, which could be maybe yesterday, or today when I call this morning, because she is feeling absolutely awful in terms if feeling (just ill) as she would describe it, it MAYBE today that the Calcium levels are extremely high, BUT because there is no blood test today, this would of course not be able to be detected, and THAT is why I'm assuming the GP's, even the Consultant Encrinologists, are NOT able to detect the condition themselves??

      You maybe EXTREMELY lucky and have the blood test carried out on the same day you are feeling absolutely awful, and then they are able to detect that the Calcium levels are in the abnormal range etc!

      IS WHAT I'M SAYING MAKING SENSE ALAN?

      IS THIS WHY A LOT OF GP'S AND CONSULTANTS ARE 'FOOLED' BY NOT MAKING THE DIAGNOSIS OF "HYPERPARATHYROIDISM"?

      The reason I ask, is that, as mentioned in my initial post, My Mother has been feeling this way for quite some time now, and after having many blood tests, the same results came back ALL the time of 'everything was OK', and we just could'nt work out as to what the problem was!

      After the last blood test a few weeks ago, she was called by the surgery to come to an appointment asap, something that never really kind of happens at our surgery!

      They said that she had elevated levels of calcium, and I'm assuming they detected these abnormal levels (because) she happened to have her blood test on a day that these calcium levels were high (as mentioned above), SO this diagnosis had been more luck than judgement, without sounding too negative!!

      Anyways, the Encrinogist says the levels are NOT that high to cause the problems, BUT after reading the website information, there's days where it may show the levels of calcium of just over normal, quite a bit over normal, and then HEAVILY over normal!!

      The blood tests have more than likely shown the levels to be NOT high enough for him to act immediately, BUT then the next day, my Mum may have a HEAVY attack of calcium release, and of which IF it were shown in the charts to the Encrinogist, then maybe he would have given an appointment much, much, earlier than the 9 months we now seem to be faced with!!

      ANYWAYS ALAN, AFTER ALL MY BABBLING ON, IS THERE ANY OTHER ADVICE YOU WOULD RECOMMEND AT THIS MOMENT?

      WHERE DO I GO FROM HERE WHEN THEY DON'T SEE THE CALCIUM LEVELS HIGH ENOUGH IN ORDER TO RUSH THINGS THROUGH?

      Appreciate any help or advice you are able to help with?

      Kindest regards,

      Chris Perse

      Report Reply
  • Posted

    Do what I suggested. Join Sally Powell's facebook site. Get your mother's blood checked at a private clinic. The two most important checks are for her calcium (remember it's ionised calcium you want checked not serum adjusted calcium) and PTH level. Blood for these tests should be taken at the same time.

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