Hyperparathyroidism help

[ShannonT]

Is there any forum that discusses hpt. I have hypothyroid but have also just got dx with Hyperparathyroidism

Thanks

Shannon

[bantam12]

I have a website at hyperparathyroid.forumotion... which gives lots of info but the actual forum bit is no longer active.

There is also an American site parathyroid.com but some of the info isn't relevant in uk and remember that any test ranges will be different.

[birkie]

Hi shannonT

Just a quick rundown on my hyperparathiyroidism experience I was diagnosed in 2004 after having weird symptoms then I eventually vomited and was bedridden my gp kept saying I had a water/kidney infection symptoms were. Hot,sweating,nausea, no energy, weird heartbeat was eventually diagnosed when my lovely mum who I lost in 2011 made my gp do a blood test he came bk to my house to tell me I had hyperparathiyroidism.. I saw an endo was given a drug which began with a c think it was cyomel my gp did one more blood test then said my levels had returned to normal and I didn't need the meds anymore.. I was lost as I didn't know what this hyperparathiyroidism thing was I never felt right since having it and 2 years later was diagnosed with ME/ fibro.. I know more now.. And had hyperthyroidism in 2018 got thyroid removed due to it being toxic had thyroid storm to.... Theirs not much out their for hyperparathiyroidism and I don't think my gp took it seriously 🙄🙄

[ShannonT in reply to birkie]

I hear what you are saying. It is sad that such a difficult disease gets ignored. They act like you are the problem. If you can look up the website parathyroid.com

I would have your PTH retested as the med can bring down the calcium but the disease process continues

[birkie in reply to ShannonT]

Hi

I agree my gp really never took it as something he should check regularly as I said I only had one blood test which confrmed the illness then levels returned to normal and that was that.. Now I have no thyroid after having serious illness and thyroid storm.. My calcium levels did peek I was taken to hospital with kidney pain diagnosed as passing a stone not long after my TT but gp wasn't bothered about the calcium levels only had them check with a full thyroid pannle after 7 weeks said normal.... What's normal!!!! 🙄

[ShannonT in reply to birkie]

Not sure where you live, but you may need to look for a new gp

[birkie in reply to ShannonT]

Hi

I moved outa that surgery about a year later... Then new gp diagnosed ME/fibro... But it did take this surgery 3 years to diagnosis me as hyperthyroidism overactive thyroid I kept telling him it was maby my parathyroid glands because the symptoms were pretty much similar but he kept saying it was the menupause.. that's why I had to get it removed.. Don't have much luck with GPS.. 🙄 I live in a small town only 3 docs at my surgery and ones at the hospital as he looks after a ward.. 🙄🙄