Parathyroid Surgery

[MichaelJH]

I posted many months ago that my girlfriend was undergoing investigation of her parathyroid as her calcium levels were off the scale. This culminated in it being removed earlier this week. Within 24 hours her calcium levels had come down by nearly a factor of 1000 to the normal range, 2.2. She is home but fairly knocked out. My personal view is that once they decided on surgery (last October) it should have been sorted a lot faster.

[bantam12]

A few months wait for surgery is pretty good, I waited almost a year for my pth op. In general diagnosis and treatment for pth problems does take a long while because it's not well understood by many docs.

Your girlfriend should keep a check on her calcium levels for about a year, it's not unusual for another adenoma to be lurking but if her surgeon did a full exploration she should be ok.

[MichaelJH in reply to bantam12]

Thanks for the reply. In fact investigations started more than two years ago. The op only happened now as she is awaiting another for an arthritic hand and that surgeon felt there would be a better outcome with normalised calcium levels.

[bantam12 in reply to MichaelJH]

Yep takes a long time from start of investigations to final diagnosis, I hope your girlfriend gets on ok with the next op.

[Congirl]

It seems like it is difficult to get anyone to diagnose and to get any treatment.

I have been diagnosed with osteoporosis. Saw endo last week he replied to myself and the GP who referred me to say potential hyperparathyroidism and to check yearly with serum calcium. Also said he does not need to see me again . I find this unsatisfactory as my osteoporosis could be caused because of this and waiting a year could cause it to be worse.

Not sure what to do next wondered about paying for a scan to see if it shed any light onto the situation, but not sure where to go and could I refer myself?

[bantam12 in reply to Congirl]

Why does he suspect hpth? If your calcium and pth are raised now then waiting a year is very wrong, unfortunately many Endos take this watch and wait approach and it's not doing the patients and favours.

You need to find another Endo who is experienced in hpth, there's no point in paying for scans as the one you will need is a sestamibi scan and that will need an Endo and/or Surgeon to refer and read the results.

You could see a private Endo but you can't rely on that being any better than an NHS one, I paid privately and still had to battle for a surgical referral.

Be aware that both ultrasound and sestamibi can miss the adenoma so you would need a very good experienced surgeon who is willing to go in and find it !

[Muffy]

4D ultra sound scans can give the final confirmation.

[t3rr]

It took me over a year to get my op!! Hope she recovers well.

[Chicagointhehouse]

Yes that’s true. My sister had the same problem calcium levels were through the roof it was her parathyroid had it removed and she’s fine. She obviously had a good endo who properly diagnosed the problem good for her because my sister felt like she had something more serious untill her doctor found the problem.

[MichaelJH]

The problem with the slowness to diagnose and treat is that the whole time the elevated calcium levels are causing damage; be it erosion of bones and joints narrowing of critical arteries, or the development of kidney or gall stones.

[julesmarg]

I had surgery after 9 months wait, agony, terrible symptoms. If had again I'd cut out using an endo then find a good parathyroid surgeon, there's a list online somewhere. I'd even pay for first meet up privately then go from there. It was a nightmare, off work all that time. Empathy with your girlfriend.