1. Community
  2. Diabetes and hormone problems
  3. Thyroid and Parathyroid Disorders

Anyone with Hyperparathyroidism?

Posted , 7 users are following.

kate29836
kate29836

I was diagnosed with this some years ago after suffering for years with kidney stones, they did try and remove my parathyroid glands but couldn't find them, mine aren't where they should be and further tests have come up blank as to where they might be in my body (looking for a needle in a haystack was the term used!) I take Bendrofleumezide (sp) alternate days to alter the acid in my urine. I'm constantly tired and fed up being told i need to watch my weight and i should exercise more, i'd love to exercise more but some days it's all i can do to get my head off the pillow. I could go on and on here just wanted to know if there was any sufferers out there and wondered how they cope with this condition?

1 like, 15 replies

15 Replies

  • mynyddrob
    mynyddrob kate29836

    Posted

    Hi Kate

    My problem started after routine blood tests, showed high PTH and elevated calcium, Had one procedure to locate parathyroid but they failed , now awaiting second attemp by top man, so I would say to you ,make sure you have a expert in the field before any other procedures.

    Bob

    • kate29836
      kate29836 mynyddrob

      Posted

      Hi Bob, thanks for replying I hope they succeed this time in finding your parathyroid glands and wish you a speedy recovery!  As far as i'm aware he was the top man i had at that hospital but then i never thought to question it and get a 2nd opinion sad 

      Kate

  • angela46352
    angela46352 kate29836

    Posted

    Hi Kate. I have just been diagnosed with this too. Wondering whether to go to Florida to get the surgery done at the Norman institute.  I am very tired all the time and got kidney stones because of it all. How are you doing now?

    Angela. 

    • mynyddrob
      mynyddrob angela46352

      Posted

      Hi Angela

      My problem started after routine blood tests, showed high PTH and elevated calcium, Had one procedure to locate parathyroid but they failed , now awaiting second attemp by top man, so I would say to you ,make sure you have a expert in the field before taking any other procedures.

      As a follow on to this response to Kate :

      My dodgy parathyroid gland has been found,  Eurika !!. It is in my chest !! It was found by a scan using a radio active isotope. Please persist with scanning for it as it is there, my radiologist at the Heath hospital ,Cardiff ,did not give up and now I am hoping to have a simple procedure to remove it . It has taken me Nine years to get to this point. My surgeon who is regarded in the top five specialists in the country, strongly advised me against " the Norman Institute" 

      Get the right scans done by the the top people ! Do not give up. Rob

    • holly15259
      holly15259 mynyddrob

      Posted

      hi rob, did your dr say why he did not like the Norman Institute in tampa?

  • mynyddrob
    mynyddrob kate29836

    Posted

    Hi Kate

    My dodgy parathyroid gland has been found,  Eurika !!. It is in my chest !! It was found by a scan using a radio active isotope. Please persist with scanning for it as it is there, my radiologist at the Heath hospital ,Cardiff ,did not give up and now I am hoping to have a simple procedure to remove it . It has taken me Nine years to get to this point. Rob

    • angela46352
      angela46352 mynyddrob

      Posted

      Hi Bob! Sorry please see my replies on Kate's thread. Hope she doesn't mind. I am desperate for info! 

      About why not go to The Norman Institute? Before I spend money and waste any time on it?

      angie 

  • angela46352
    angela46352 kate29836

    Posted

    Hi Bob and Kate - Bob do you know why you were strongly advised against The Norman Institute?

    i am considering going! 

    Angie

  • angela46352
    angela46352 kate29836

    Posted

    Bob, very concerned its taken 9 years for you to get this point but very glad for you that you are getting there! I can't see why not go to the Norman institute? Thousands of Americans can't be wrong surely? 

    Angie 

    • mynyddrob
      mynyddrob angela46352

      Posted

      Hi Angie,

      I had no symptoms, aged 54, just a routine blood test  but showed up elevated PTH. On refferal to Swansea hospital, consultant explained everything and started on scans to identify dodgy gland.Many scans later, after ultrasound , CT, Nuclear and even PET scan ( very expensive done privately ) still no gland. He was advised by expert, that a exploration of the neck would reveal the gland lying behind the Thyroid, which is the typical hiding place !. He operated and found my four parathyroids in excellent condition with no problems, he removed two healthy ones just in case and stiched me up. My PTH was still elevated and my calcium level rising, unfortunately, the hospital underwent computer upgrading and I became" lost and forgotten for five years" in the system. I belived that there was no solution so as I had no symtoms forgot about it. My GP  pushed me to rectify my increasing calcium level so I contacted the top man in Wales and the team have found it at long last.

      As for Norman Institute I have heard that a telephone consult can cost hundreds of pounds before they start !

      Please Angie, if your team cannot find the gland around your thyroid, insist on a chest scan using nuclear tracing ( very safe ) The Norman inst., will only do the same !

      We have some of the best in the world but can get bogged down with people who talk a lot but achieve nothing. Rob

    • angela46352
      angela46352 mynyddrob

      Posted

      Thank you for the advice. I went ahead and got my sestimibi scan yesterday. They injected a small amount of radiation and I had to lie there whilst my neck image developed on their screen. It's all very comfortable and was no trouble at all. I haven't got my result yet. I don't want to fly to Florida with all the current situations globally at the moment (to fly at all anywhere I mean!) so I will trust my local hospital to look after me smile
  • donna38794
    donna38794 kate29836

    Posted

    I was diagnosed with a under active thyroid 3 months ago

    Before finding out what it was I felt horrible I was tired

     All the time my skin was very dry I was losing my hair and 

    I had symptoms of carpal tunnel. I wondering if anyone has

    Experienced swelling in just one leg with this.

    • angela46352
      angela46352 donna38794

      Posted

      Hi Donna! I am sorry to hear your troubles. As I have a slightly different problem with my PARAthyroids I don't know if the symptoms are the same but I have had carpel tunnel in my left hand and I always moisturise after showering to keep my skin soft. I had my sestimibi scan yesterday. 

      I don't know the results yet. 

      Wishing you all the best. 

      Angie 

  • ThankfulWanyana
    ThankfulWanyana kate29836

    Posted

    Hello I've been diagnosed with hyperparathyroidism on Thursday 5th of November, I was wondering if anybody has had natural treatment for this please? I think I would also start a new post to ask about this as this is slightly separate topic .

    In the meantime I'm going ahead with being put on the waiting list for an operation, I have my ultrasound scan tomorrow, Tuesday the 24th of November .

    It would be good to hear from those members who have replied above to find out how you are getting on now please ?

    I have had "M.E. " for 19 years , I'm being treated naturally, this helps with my weight and also some of the other symptoms , however I'm still not well enough to work and need help at home etc

    Feeling positive to hopefully get a good outcome eventually .

    I believe the natural treatment has helped me to keep going so far .

    • tim77647
      tim77647 ThankfulWanyana

      Posted

      My mum had 2 of her glands removed - her condition worsened - they found out ALL her glands were affected. I am looking for alternative therapy. I am sure there is something out there the big issue is finding it. Most people opt for surgery based on medical advice. 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.