Primary hyperparathyroidism in my 30's

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Hello, I've received an official diagnosis of primary hyperparathyroidism recently, and am preparing to move toward surgery next.

I'm relieved at finally finding a diagnosis that fits, having suffered from nearly all possible parathyroid symptoms for years now (including four rounds of kidney stones), especially one that can be resolved.

I'm a 33 year old mom of five with a veteran husband who has PTSD - the possibility of having energy, sanity, less crankiness, all of it - sounds like a dream.

I am feeling a little trepidation moving forward about finding the right surgeon, trying to assure we get all affected parathyroids, recovery, etc.

I'd love to read anyone's story (especially if you're similarly aged to me), suggestions on selecting the right surgeon, what recovery and life "after" hyperparathyroidism is like. Has anyone felt it was easier to lose weight with less fatigue?

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  • Posted

    See my reply to Tara.  Alan.
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  • Posted

    I was diagnosed at 45 but have had kidney stones since my 30"s and had gall bladder surgery in my 30s - I always thought when everyone talked about being tired they felt like I did - I do feel better now but it was not over night as many report - I loved my surgeon but need to find an endo for follow up - I self diagnosed and went directly to a surgeon - if you live near Chicago I highly recommend dr Angelos at university of Chicago - it's such. Hard disease because no one has heard of it and they don't understand it's not my thyroid

    I have lost weight now that I am more active - I feel like some of the weight was my body holding on to water weight - kind of like the edema you get during pregnancy

    Best of luck!!!

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    • Posted

      Thank you for your response. I'm in Oregon, and I've had one appointment with an Endo, next up is imaging then surgery. I think I'm going to have to be more assertive than I'd like in getting a surgeon who is more experienced, she mentioned sending me to the local hospital for it and I doubt they perform these all that regularly.

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    • Posted

      I would try and find someone who performs a lot of these / I spoke with the top two endo surgeons in Chicago both had very different approaches - I went a little more old school - I liked that he would make sure the levels were down before they finalized the surgery - so my incision was in the middle of my neckl - the other surgeon was going to do to the side because he was certain I only had one tumor which was right but I didn't want to risk - also for me - the surgery was more shocking than I expected based on what I read but it all heals and isn't even noticible just takes time. - I read one person was out to dinner - it took me several weeks for first stage and then months and now one year later I finally feel better than I have in almost 10 years

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