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Hyperparathyroidism

Posted , 7 users are following.

moco50
moco50

My husband has recently been told he has hyperparathyroidism. He has been experiencing a number of symptoms over the last 12-18 months including extreme fatigue, inability to concentrate, dizziness/nausea.chest pains and sleeping difficulties. His quality of life has deteriorated greatly. There is a 70 day wait to see an Endocrinologist. His GP said today that it wasn't anthing serious and not to worry about it. Is the GPs view on this the usual for medics? 

0 likes, 14 replies

14 Replies

  • pam34048
    pam34048 moco50

    Posted

    No I not to sure about your dr.  When I was hyperthyroid  by not much because of too much medication the dr called me right away and changed my medication.  I would get a second opinion from another dr or go to a walk in clinic if he is having chest pains maybe going to the hospital would be the best choice.  I am concerned about his heart.  
    • moco50
      moco50 pam34048

      Posted

      Thanks for your reply pam he has had angiogram so heart seems ok if it's muscular not sure if that is hpt related.

       

  • ariillustrates
    ariillustrates moco50

    Posted

    Hi!

    If he really isn't feeling well, make sure he pushes this issue with his GP. There isn't a ton they can do until he sees an endocrinologist, and unfortunately the wait list for those is long... My initial appointment was scheduled for four months out, but I was able to be seen sooner because of a cancellation. Make sure he is on the wait list.

    I'm sorry he isn't feeling well, and hope he can get help for it soon. Thyroid problems can be miserable since they affect so much of the body. Good Luck!

    • moco50
      moco50 ariillustrates

      Posted

      Thanks ari we were hoping for a cancellation but no luck so far.

       

  • alan65290
    alan65290 moco50

    Posted

    GPs and most endocrinologists don't fully understand this disease.  Join Sallie Powell's Facebook site.  You'll get massive support and help.  She has over 1000 members.  You're not alone.  Think about going private at least for an initial assessment.  If you are in or near London pay to see Faust Palazzo.  He does more operations of this sort than any other surgeon in the UK.  Alan. 

    "Hyperparathyroid UK Action4Change"

    • moco50
      moco50 alan65290

      Posted

      Thanks Alan we've read about FP lots of good feedback on  his work

      unfortunately we live in Durham but may still consider seeing him.

       

  • katrina182
    katrina182 moco50

    Posted

    I was diagnosed with hyperparathyroidism in 2010.  I have the same symptoms you list for your husband, including the chest pains - and no one has ever confirmed for me that chest pains would be associated with the disease, but EKG/Xrays and other tests show nothing wrong with my heart or chest.  So I'm glad to know I'm not the only one.  Scheduled this coming Monday to have a nuclear scan and, hopefully, find the parathyroid gland that's affecting me and have it removed.  Did he have his removed and, if so, how was the surgery and how is he feeling?  If not, I hope there's been some progress?  Thanks.

    • moco50
      moco50 katrina182

      Posted

      Hi Katrina we are presuming chest pains may be bone pain connected with osteoporosis due to calcium being leached from them because of the parathyroid not functioning correctly. Husband had a DEXA  (bone density) scan last Friday and we are due to see endo. again next week. Also had scans of kidneys/gall bladder/pancreas. Hope your scan shows the PHT gland and you are offered an op. I think we may have a way to go to reach that point. Have you joined one of the sites specifically for people with hyperparathyroid issues? They are very helpful! GOOD LUCK  xx
    • katrina182
      katrina182 moco50

      Posted

      Thanks for getting back to me.  I did have a nuclear scan yesterday which showed two parathyroids with adenomas and possible additional thyroid nodules (I've had 4 for some time - not sure if these are new or just growing).  A multiphase CTA scan scheduled for later this week to get a little more clarity on yesterday's test before any surgery.  The chest pain doesn't seem to register with anyone in my medical care as having to do with the parathyroid.  Wish someone could figure it out - it's painful and bothersome.  Seeing my primary care doctor this afternoon and will bring it up again.  I hope the bone density scan for your husband didn't show too much loss, and that the organ scans don't show any future or long term damage!  Seems like you've both been dealing with this for quite some time.  Thanks for the tip on any group sites for hyperparathyroidism.  Hadn't thought of that, but will go and look.  GOOD LUCK!

  • emli55
    emli55 moco50

    Posted

    The GP's view is simoly reflecting his lack of knowledge and wisdom about this condition. I had to endure it for four years before I had the adenoma out (presence of which can best be displayed via a systemibi scan). Unfortunately the surgeon only believed in checking the two glands on the side he was operating on. Now, my calcium levels in my blood are rising again, the soles of my feet are killing me, and my bladder is once again playing up. So it is highly likely that I have another adenoma on the other side. But I cannot have another operation,because 36 hours after the last one I succumbed to NPPE Tyoe 2. Next time it may well be Type 1.

    • katrina182
      katrina182 emli55

      Posted

      Oh - that's terrible!  Hoping for the absolute best for you!!  I also have found that the doctors are not entirely familiar with the symptoms that can arise with a parathyroid issue.  My GP nor the endocrinologist seem to associate the issues I've had with parathyroid, despite the fact that others with the condition report the same symptoms. 

      I did find the cause of the chest pain though - had a sestamibi scan last week which showed the faulty parathyroid, and also showed some additional thyroid uptake.  Was sent for a CT scan of the parathyroid, which covers a wider portion of the anatomy, and discovered there is ectopic thyroid tissue with a couple of larger masses in my chest (anterior and upper mediastinum).  Now I need a surgeon that is not only familiar with parathyroid but able to remove those as well.  Hoping to feel like a new person after the surgery.  What is NPPE? 

    • moco50
      moco50 emli55

      Posted

      Hi emli so sorry re NPPE, had to google it. Interestingly my husband has real difficulties with the soles of his feet. That is one issue we hadn't thought would be connected to HPT!

    • moco50
      moco50 katrina182

      Posted

      Hi Katrina did you join Hyperpara UK I'm sure at least two people there have had ectopic parathyroid ops they may be able to recommend someone.Hope it is sorted for you soon. We are still waiting for DEXA results consultant has arranged for neck scan.

    • emli55
      emli55 katrina182

      Posted

      NPPE Type 2 was whgat I developed 36 hours after my adenoma was taken out. It stands for Negative Pressure Pulmonary Edema.
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