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Has anyone out there had a parathyroid problem?

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mvwaugh
mvwaugh

I have had a raised parathyroid hormone blood result recently also a raised calcium in the blood result. I had raised calcium levels several years ago but after a scan of my parathyroid glands which showed no growths it was put down to lack of Vitamin D and called secondary parathyroidism

I was told to increase my Vitamin D levels which I did and my calcium level dropped. I have continued on the supplementation. I have severe sleep problems, am tired and grumpy, my hypothyroidism been under control for the last 8 years. I am border line diabetic. Almost 73 years old. Any suggestions welcome

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  • siobhan1978
    siobhan1978

    Posted

    Hello! I know this is an old message but I thought I would reply. I am 35 years old and two or three years ago I had to have surgery to remove a parathyroid gland, like Nancy above. It took me a couple of weeks to recover from the surgery, but in other ways I felt much, much better. I sleep better now and have tons more energy. I hope you're feeling better these days!
  • mvwaugh
    mvwaugh

    Posted

    Thanks for replying. I have had a consultation with an Endocrinologist and he has sent me for bone density scan.I am due for a kidney Scan to see if I have kidney stones and then they will decide what to do.

    I am better than I was but not sleeping very well, I decided to get help from a 75mgms of Trazadone

    which has certainly improved things.

    Will keep you posted. Maggie

  • siobhan1978
    siobhan1978

    Posted

    The bone density scan isn't bad at all, I remember that one, and the kidney scan was just an ultrasound. I know at least one scan I had, to look for which parathyroid gland was misbehaving, I fell fast asleep! Good luck with it allsmile
  • mvwaugh
    mvwaugh

    Posted

    Thanks. Maggie
  • nancy19455
    nancy19455

    Posted

    I'm feeling much better since my surgery. Less pain, more energy, less hair loss. It took me around 3 weeks before I felt normal after the surgery. I think your body takes a while to adjust to having normal Calcium and Parathyroid levels! My scar is starting to look better too!
  • siobhan1978
    siobhan1978

    Posted

    Yeah, a couple of years out my scar is almost invisible.smile I had two weeks off work after the surgery and I'd say it took me a comparable amount of time to get really better. Just fine these days though!
    • Fluffy43
      Fluffy43 siobhan1978

      Posted

      Hi Siobhan just found this web site it's amazing, my long story is right at the bottom of this thread. So glad to hear your scar is almost invisable. Did you get all your energy back in the end? also were you ok after the general anethestic and did you have to have antibiotics I know each case is different and did you have the one inch or 2 inch cut?

      My op is on july 17th 2015.  here's to happy healing!! Where did you have your op?

      Nicola

    • siobhan1978
      siobhan1978 Fluffy43

      Posted

      Hi there! I did get all my energy back, though I have to take thyroxine now (since they had to take out half my thyroid gland to get at the parathyroid that was misbehaving). You wouldn't even know anything had happened now.smile The scar is 2 inches and I didn't take any antibiotics. I was fine after the anaesthetic! Slept most of the day following the op and was a bit wobbly for a week or so but then absolutely fine, no nausea or anything like that.

      I had my op at Hammersmith hospital with Dr Palazzo. I can't praise the hospital enough. The food was awful  but the staff were lovely.

      Good luck! You'll never look backsmile

    • Fluffy43
      Fluffy43 siobhan1978

      Posted

      Thank you so much for your reply. It has been good to talk to someone who has been through it.

      Nicola

    • alan65290
      alan65290 siobhan1978

      Posted

      Hi Siobhan.  Are you sure that Mr Palazzo had to take out half your thyroid to get at the misbehaving parathyroid gland and that he didn't remove half of your thyroid for other reasons?  Quite often surgeons will remove anything unexpectedly bad that they find during an operation.  Apparently this is not that uncommon during parathyroidectomies since the thyroid gland will often have nodules that should be removed by the surgeon.  Kind regards.  Alan.
    • siobhan1978
      siobhan1978 alan65290

      Posted

      Hi Alan. Mr Palazzo told me that the parathyroid was embedded within the thyroid gland, that the thyroid had grown around it so thoroughly that he wasn't able to extract the parathyroid without taking the thyroid with it. He was quite excited when telling me how clever he'd been.smile Cheers, Siobhan
    • alan65290
      alan65290 siobhan1978

      Posted

      Hi Siobhan.  Thanks for that info.  He's quite some surgeon.  Alan.
    • blue0rchid
      blue0rchid siobhan1978

      Posted

      Hi Siobhan1978,

      I have just found this thread after searching for advice. I have had high PTH levels for just under 3 years and scans to check for enlarged parathyroid have come back negative. However I am due to have surgery with Dr Palazzo on 14th April. I am only 34 so they have said I am quite young for this sugery.

      Did you get to go home the same day?

      I am quite worried about having the op

    • traci46096
      traci46096 blue0rchid

      Posted

      I've had this surgery only to find out my PTH levels are still high. I experience pins and needles. Make sure the doctor looks at all four parathyroid before he comes out of your neck because it's quite possible the scans didn't detect one. As it is in my case and now I have to back under the knife unless by some miracle they can remove it non invasive my. I hope all goes well with you. Let us know.
    • blue0rchid
      blue0rchid traci46096

      Posted

      Oh I am sorry to hear that. Did you get pins and needles before?

      I believe they are going to check all 4 as they said they will test the PTH levels during surgery. I have my pre-op on 8th April so will mention it then. I think I am worried that it won't be a problem with my parathyroid as I am overweight and also have PCOS.

      Good luck with your next surgery, also keep us updated.

       

    • Fluffy43
      Fluffy43 blue0rchid

      Posted

      Hi just picked up your thread, do you know about the website on face book called Hyperparathyroid uk action for change, it is a wealth of knowledge, it is a closed forum, ask to join and tell them Nicola B has invited you, the lady is called Sallie if you tell me your user name that you would use on facebook I can tell them to look out for you.. Glad to hear you are with Mfr FP, he is highly recomened. Are you seeing him on the NHS or Private. What tests has he done? Mine was not clear , they removed one and my Thymus, they did the two inch exploritry cut, sewed me back up and now there is another one, I did not go with MR FP, did not know about him , they found the 2nd one with further tests, the MRI and CT Xray found it, yet not the sestimbi, now they want to may be ,do a Biopsy before re-operating, have you had a ultra sound, CT-Xray, MRI , Venous sampling or Biopsy done..if so did all these come back negative or you may want to enquire about these... This is fantastic news, I did not know that FP could test PTH levels during surgery, this is amazing!!! can you tell me where he is doing your surgery. As I would be very , very, interested in this and to know that this is definate , before I have my re-op. Sorry, what does PCOS stand for? Everybody is different and you need to ask MR FP this , yet most of us on the other site, when it is the two inch cut, they have to look at all four ,as not clear on the scans, you are normally under for longer as it is exploritary, so you normally have to stay in one night or two and can sometimes take longer then two weeks to recover, depending on what they do and how well you are pre-op, it took me 5 weeks to go back on a phased return to work, yet some people recover quicker... Love and light and look forward to hearing from you soon, Appolgies for my english, i do lots of brain fog!!!

       

    • Fluffy43
      Fluffy43 traci46096

      Posted

      Hi just found your thread, can you read bellow, do you know about the other site on face book, you must join it if not, it is a wealth of help and knowledge! You sound in the same situation as me, Do you mind me asking what hospital you are at and who did your surgery? Send me a private message if you don't want anybody else to see the name and is it the same surgeon who is doing it again or are you going with someone else? What tetss did they do to find this other adeoma on your parathyroid, did they make you have a Biopsy?When is your next surgeory date? I really sympothise with you. Look forward to hearing from you soon.
    • elainec33
      elainec33 blue0rchid

      Posted

      Hi,

      very detailed response from Fluffy and a good idea as she said to join the group on fb  Hyperparathyroid UK Action4Change

      Regards

      Elaine

    • DFTBreathe
      DFTBreathe blue0rchid

      Posted

      Hi Blue0rchid

      I just had my surgery on Thursday of last week.

      I was a bit worried about the procedure because i have two pre-teens to run around with.

      They found during the surgery that all four for my parathyroids were enlarged. My PTH level went from 84.3 to 16.8 once they removed three and shaved the last one down. The surgery took an hour. Recovery took until about 4:00pm that same day when I was discharged.

      It's been almost a week since my surgery and my neck is fine. No pain, I can turn it like before and I can even sing to my kids.

      I only have two problems. I expected to be up and running within a few days. That has not happened.

      The first problem is that the calcium carbonate has made me extremely constipated, to the point of pain. (I even got to use the first two enemas of my life. I know ~ TMI) Please please please make sure to have something at home for you to use, IF or when constipation becomes an issue for you. My guess and hope is that I am unusual in this manner.

      My other problem was my own expectation to be much more energetic after surgery and I am not. At least not yet. I walked a mile at the park with the kids yesterday and you would have thought I was a 95 yr old with a sprained ankle....

      I am very weak and easily chilled. (It's 70 degrees Fahrenheit here today)

      My advice is to be kind to yourself. Have your home ready for a bit of a stay, food, water, Miralax and comfy clothes.

      If you have a good nurturer in your life, make use of them, if you can.

      You are young and this maybe a small blip for you and if it's not, you'll be prepared...

      Try to remember to breathe.

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