Was just told I have high calcium in my blood, what symptoms is everyone having?

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Hi everyone, I have been having horrible symptoms for about a year now cause of a bad Doctor. I have calcium in my blood , pains in my stomach, headaches and very rapid heart rate. Has any one had the rapid heart rate like that? It's kind of scary. My last doc put me on A beta blocker that has slowed it down but they have not yet diagnosed me yet. I think I have parathyroid disease. Oh yea and I have kidney stones sad

Do y'all think I might have it?

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  • Posted

    You poor thing. Sounds very familiar that you have an incompetent gp and the symptoms of primary hyperparathyroidism. I have made many comments I this subject here including a discussion purely on the symptoms which include rapid heart rate nausea brain fog gastric problems etc etc. Firstly try to avoid endocrinologists and go directly to a decent surgeon. Many endos are ss useless as the GPs. I posted up a recommended list of endos and surgeons last week. Best thing to do is join our facebook group Hyperparathyroidism UK Change4action. There are over 700 members all swapping info and experiences. We also have a surgeon on the group who is at the famous parathyroid clinic in Tampa who answers questions. Its a private group so please say Elaine sent you as we've had weirdos trying to sabotage the group. Regards Elaine

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    • Posted

      Thank you so much Elaine! I have not had very good luck at all will my endocrine doc but this new one is doing my bloodwork to see if I have this. I am going to try and join your group! Thank you!
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    • Posted

      I have applied to join the group on Facebook but 'y request has not been granted. Is there anything else I could do?

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  • Posted

    Hi Heather

    Yes, you have some of the classic symptoms of parathyroid disease.  I had the headaches,universal pains and I also had heart palpitations and rapid heart rate (to name but a few).  There are 21 different symptoms.  It sounds like you have not had the disease for long but over time other symptoms develop.   You cannot afford simply to "watch it and wait" (worst advice ever) but need to get it sorted asap so you can start to feel better.  Hope you will feel better soon.

    Rosemary

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  • Posted

    Hi Heather

    Yes, you have some of the classic symptoms of parathyroid disease.  I had the headaches,universal pains and I also had heart palpitations and rapid heart rate (to name but a few).  There are 21 different symptoms.  It sounds like you have not had the disease for long but over time other symptoms develop.   You cannot afford simply to "watch it and wait" (worst advice ever) but need to get it sorted asap so you can start to feel better.  Hope you will feel better soon.

    Rosemary

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    • Posted

      i had high calcium for at least 9 years, i had 2 doctors tell me, lets wait and see, now i have a diabetes doctor and he said, I'm sending you to a surgeon. I had the surgery 11 days ago, i hope to be feeling better soon, but not so far-

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    • Posted

      Hi Judi - I'm recently back from another trip away and just saw your message.  Have been doing a bit of holiday hopping so if I have missed a reply to anyone - apologies.

      So sorry to hear that you are not feeling any better since your surgery.  The famous centre in Tampa say you should wait 2 months and then get your calcium and PTH (parathyroid hormone level) re-tested, it takes a little while for things to settle.  My levels were perfectly back in the normal range within 2 months and I noticed a difference immediately after my surgery in Tampa.  Prior to my op I felt like I had flu every day and had daily headaches etc but when I awoke after my op, my body felt calmer and it felt like it had stopped fighting against all the symptoms I had.  (I had my adenoma for at least 6 years and it was the size of an olive when it was removed).

      If I were you I would wait until the 2 months are up and then get your bloods re-tested.  If they have not gone back into the normal range then unfortunately that likely means that they either didn't find the adenoma or it could be that there was a 2nd smaller one that was left behind.  I really hope for your sake that the adenoma was removed and that your levels go back to normal in the apropriate time.  I guess you are in the UK??  The adenomas often don't show up on a Sestamibi scan and therefore the surgeons have a hard time finding them but in Tampa they have a special piece of equipment called a gamma probe which helps to locate the adenoma.  Mine didn't show up on the scan.  I was one of the 20% or so of people who have an ectopic adenoma - mine was located deep under my collar bone and buried in my thymus gland in the top of my chest (not behind the thyroid gland where it normally would be) but the leading surgeon in Tampa knew where to look and in less than half an hour, he had removed it and I will be eternally grateful to him.  They have many years of experience just doing that one operation in a minimally invasive way and have an almost 100% success rate.  They also do re-ops for people who have already had a least one failed surgery elsewhere.

      Did your surgeon tell you if he/she had found and removed the adenoma?  If you are in the UK, which area are you in?  Elaine (hi Elaine) says that she thinks that there is now one surgeon in the UK who has the gamma probe, but the NHS would not fund it for the surgeon in my area so I know he doesn't have one.  I know that he removed what he thought was an adenoma from a patient and the pathology report proved it to be a lymph node!  So I self-diagnosed and took myself off to Tampa!  I know not all people can or want to go there but if you find you have not been cured, you might want to consider going there.

      What symptoms do you still have?  I do feel for you as I know just how awful you feel when you have it and absolutely no-one understands or 'gets' just how bad it makes you feel and some even say "well you don't look ill" !  Even worse when you get misdiagnosed like I did initially with polymyalgia rheumatica and put on steroids for a year before I did some research and found out before the endo did what I actually had and then booked my op in Tampa.

      I do hope for your sake that they did find your adenoma and have removed it.  Do let us know how you get on.

      Kindest regards.

      Rosemary

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    • Posted

      hi Rosemary and thank you for your message to me. I am in South Jersey USA, and the surgeon did tell me she got all of the diseased parathyroid removed. She also said don't be so hard on myself and give it time. It will be 3 weeks this wednesday since my surgery. My number was 76 before surgery and 23 after so she was happy with that. She is sending me for blood work soon. I hope it doesn't take 2 months to feel better. It just took me 5 months to lose 20 lbs. at the gym and i've already put 6 back on sitting around and eating ice cream. Thanks again, Judi

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    • Posted

      Hi Judi - thanks for your reply.  I am really pleased to hear your surgeon managed to remove your adenoma, it must have been in the usual place unlike mine.  It sounds like your levels have come down somewhat already which is great news.  The thing about recovery is that everyone is different, sometimes it's really quite fast and other times it takes a while but you will get there.   Well done to you for losing 20lb,  Broccoli contains a high amount of calcium so maybe cut down on the icecream and eat steamed broccoli instead (not nice I know but less fattening).  Steroid treatment for the wrong disease initially in my case caused me to put weight on and I just can't seem to get rid of it.  I will have to try harder now I've recovered pretty well from my surgery.

      Well done you.  Take care.

      Kind regards.

      Rosemary

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