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Anyone with hyperparathyroidism know why we don't do th same op as USA.?

Posted , 5 users are following.

angela46352
angela46352

I have been diagnosed with primary hyperparathyroidism and am having difficulty on deciding upon the surgery offered here against the mini op done in The Norman Institute in Florida with the radiation and gamma probe which examines all four parathyroid glands. Why don't we do that op here and what's the pros and cons of both procedures? Any help would be appreciated   

Thank you

1 like, 13 replies

13 Replies

  • jghut
    jghut angela46352

    Posted

    I am in Georgia, USA.  In 2008 I was diagnosed with hypercalcemia - producing three times as much calcuim as I should be, which was caused by enlarged hyperparathyroid glands.  That enlargement was caused by taking lithium for 30 years, which also had caused nodules on my thyroid gland.  I had needle biopsies done first and it was undetermined as far as malignancy was concerned.  Then I had surgery to remove my thyroid gland, the nodules  and three of the four enlarged hyperparathyroid glands.  I have blood work done annually and my calcium level now is fine.  I don't know about the procedure you mentioned in Florida.  I do know that if one's nodules are malignant, he/she is given one dose of radiation subsequent to surgery.  After surgery my nodules were found to be benign, so since 2008 I have taken the drug Synthroid for have no thyroid gland, and I am fine with the one hyperparathyroid gland left.
    • angela46352
      angela46352 jghut

      Posted

      Hi there. Wow it sounds like you have been through a lot and I am so glad there was no malignancy found. Thank you for sharing your experiences. I am due to go for a 'parathyroid scan' next week to look at mine; not sure what that means unless it's the sestimibi scan that I have heard of. They will be injecting me with a small amount of radioactive agent is all I know. 

      Thank you for replying and I wish you continued good health. 

      Angie

    • shirley68565
      shirley68565 angela46352

      Posted

      Hi Angela. Thought I would let you know how I went on after my appointment. It seems that the ultrasound did not show anything. The sestimibi scan showed a "Hot spot" but did not show any parathyroid s. So they know I have 1 but not sure if I have any more. Went to see the surgeon and he said he will do a small cut where the tumour is and take it from there. If it means a large neck cut to find more he will have to proceed. So everthing is still uncertain. I'm on the waiting list for surgery now. Can't see it before Christmas. My vit d is down so having a lot of bone pains again. Have you got any further?

      Shirley

    • angela46352
      angela46352 shirley68565

      Posted

      Hi Shirley  thank you for your message. I am similar to yourself in that my scans have all been negative. My surgeon still wants to go ahead though. My op is this Saturday. I am really scared. He has promised to look at all 4 glands and says the scar aims to be about 2-3 inches. I hope it's not bigger than that. 

      In a way I am glad to be getting it over with, but I half wish I was going to Tampa. 

      Wish me luck. 

      Best wishes to you and do keep in touch.  Let me know how you are getting on. 

      Angela ❤️

    • angela46352
      angela46352 shirley68565

      Posted

      Hi Shirley! I have had my op! All went well. Just feels like a sore throat after! No pain at all at the incision. Bit of bruising around throat but nothing at all to worry about. I was so nervous before I went in! Really I needn't have worried myself as it was fine! smile

      I had one bad gland the size of a baked bean he said; so that's gone now. Leaving three to kick in and start working normally with any luck!

      That tied in with what it says on Dr Norman's web site; that if you have kidney stones (which I do) it's normally almost always just one bad gland. 

      Keep me posted on your situation. Hope you hear soon about your op. I can't stress enough about not worrying about the actual op ; it's really not that bad and nothing a week or two of rest won't cure. I don't really even need any painkillers. Only taking paracetamol now and again but don't really need it! smile

      Take care Angie 

    • shirley68565
      shirley68565 angela46352

      Posted

      Hi Angie. Your comments were really positive! Makes me fell a lot better for when I have my operation. Thanks so much for letting me know. How have your levels been or is it still early days. How long were you in hospital and did they say how long you need off work? Will you need to take any medication? My consultant said I will need vit d long term and calcium short term.

      Keep well. Shirleyx

    • angela46352
      angela46352 shirley68565

      Posted

      Hi Shirley! Glad I have given you a positive feeling! Well my surgeon has not said anything at all about my levels. He wants to see me 6-8 weeks post op though; so I guess he will check my levels then?  I have been given some orange flavoured effervescent calcium tablets which dissolve in water to take; but only if I get "tingles". I took half of one yesterday, but I am not good at taking meds. I was told my vit D was low by the original doc but he then forgot to prescribe the vit D which I then had to chase up myself! I haven't been given any indications as to what I should be doing with the calcium and vit D; it almost seems like it's up to me to decide!

      I will chase this all up. My surgeon did say though that my levels would all sort themselves out and not to worry. I am still going to ask for a blood test in a month or so just for my own peace of mind!

      Hope you are ok and get to hear soon

      Angie 

  • shirley68565
    shirley68565 angela46352

    Posted

    Hhi Angela. Just wondering how you are going on. I've been for my pre op assessment but no date yet. Could be a while, they said the assessment lasts for 3 months! I'm getting lots of bone pain again. Vit D must be getting lower.

    Shirley

    • angela46352
      angela46352 shirley68565

      Posted

      Hi Shirley!

      Great to hear from you although I am sorry to hear about the bone pain :-(.

      I am sure you will get a date pretty quickly. Especially if you keep ringing the hosp to chase it up? Tell them you have pain etc. 

      I am not too bad thanks. In fact I am a little bemused by the lack of follow up afterwards! No blood test has been done and I have no idea what my calcium levels are doing now or whether the op did in fact work?! I feel quite tired still; but have had a lot of other stuff to deal with; and Xmas is creeping up on us very fast!! 

      As a widow with two children I have a lot going on; but then again most people do seem to these days!

      My scar is annoying me a bit; there is a lump at the far end. Scar tissue? I am seeing my GP to let him/her take a look tomorrow. Keep you posted. I also want to ask for a blood test!

      Keep your chin up sweetie. At least you are on the right path. I worry about all the people out there who don't get diagnosed at al! There must be loads don't you think ?

      I only found out because I got kidney stone stuck on holiday. 

      Keep me posted. 

      Best wishes 

      Angie x

  • alan65290
    alan65290 angela46352

    Posted

    My wife had a parathyroidectomy 3 years ago at the Royal Marsden in London.  Since then her PTH level has remained high and her calcium level has bordered on the upper limit.  I persuaded our GP to take her off lithium (thank God) as the endocrinologist that we are seeing has suggested that she might have lithium induced parathyroidism and that all her glands could have been effected.  He has put her on Cinacalcet which she starts today.  Dr Norman's web site is brilliant. If it were only one adenoma that my wife has then I would be taking out a mortgage and we'd be on the plane to Tampa for an operation that would be no more than the removal of a nasty wisdom tooth under a light general anaesthetic.  Once you've closely looked at Dr Norman's web site you will see that our Drs do not know what they should about this condition and its treatment.  Sestamabi scans in the UK are almost a waste of time; unless you are suffering from kidney failure there is no such thing as secondary hyperparathyroidism.  Never have a UK parathyroidectomy which does not include interoperative PTH measurements.  I am not a doctor but have gleaned this information from Dr Norman's web site.  You must look at it carefully and come to your own conclusions.  You will not get GPs or endoccrinologists to look at this web site in any detail because it is written in patient speak and not Dr speak.  My best wishes go with you.

     

  • linda24932
    linda24932 angela46352

    Posted

    Hello Angela.  I live in England and have had this problem for more than ten years. Specialist says they cant operate due to scar tissue from a thyrodectomy done over 40 years ago. I have been taking vitamin D as prescribed by specialist but worry about taking it. There is an op you can have with local anaesthetic to remove the glands. They wont do this either. Perhaps you should ask for it. All best wishes Linda
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