living with primary hyperparathyroidism

First topic message reminder :

Dear all,
Thank you for setting up this forum, i have been reading posts on old forum, and am pleased i can now post. I  have been seeing endocrine consultant for nearly a year. i first went to GP and had bloods done, calcium corrected at 2.57 ref range 2.2-2.6, PTH at 11.7 ref range up to 7.5. I had an ultrasound scan done which states could be thyroid nodule or intrathyroid parathyroid and only time will tell.

had 2 hospital appointment, more blood done, calcium towards high end of ref range and still high pth of 9.5, normal vit d of 78.

Lots more blood done- still no discussion about what i have, PTH came down and so did VIT D, calcium still high end of range, now been taking vit d tablets, as consultant requested.

Oh yes, lots of symptoms, bad mood swings, feeling sick, stomach problems, and lots of bone pain.

Due to go back to larger hospital in East anglia on may 23. This is 6 months from last appointment, currently feel like i am going round in circles, there was talk of doing nuclear medicine scan in nov 2013 from registrar, consultant said "not yet" , so still no confirmation of what is going on.

I really do want answers, but the hospital seem to just want to wait, i am 41 years old, Mum has graves disease. I have written to consultant about all of this, they said i must wait, they might refer me back to GP for further monitoring- i have asked what are we monitoring- but don't get anywhere.

no mention of surgery, 

thoughts most welcome.

best wishes

Lozza

Hi Edwin,

I'm fortunate in that the system where I am is all computerised. The GPs can access patient records on the hospital database by logging in at the surgery.

I don't know if this depends on your surgery being technologically capable or if it varies depending on the local health authority. It does seem crazy in this day and age that your GP can't get access to your full patient records.

Be interesting to know what it's like in other parts of the UK.

Love
Dee

Hi Everyone,

Thanks for keeping me sane, i have been busy at work and was working late on two evening concerts, including last night, so got very worried about hospital stuff, i am now calming down, i guess i am anxious to get results .

I will take in paper and pen and ask for results, yes Tigerlily you are right about them not want us to ask stuff which slows them down.

I know for Cambridge area, if GP request bloods she can see all results, but if Addenbrookes ask for bloods only they can see and not GP.

I really don't understand their system at all. I will wait till ultrasound report comes through and then do a freedom request thing and get copies of all bloods etc.

I had a feeling they wouldn't want to do this at the clinic. Perhaps we could have a fund set up and buy the clinic a printer for patients to get copies of test reports. ( All this free thinking won't go down well with them !)

The trouble is the hospital think we are all too thick to understand things, TIMES HAVE CHANGED!

thanks once again to all and good luck everyone with appointments, i hope to update soon.

best wishes

Lozza  
ps- it has been very sunny here, so i def got my Vit D for the day !

pilipala wrote:Hi Edwin,

I'm fortunate in that the system where I am is all computerised. The GPs can access patient records on the hospital database by logging in at the surgery.

I don't know if this depends on your surgery being technologically capable or if it varies depending on the local health authority. It does seem crazy in this day and age that your GP can't get access to your full patient records.

Be interesting to know what it's like in other parts of the UK.

Love
Dee

My GP surgery is computerised, but they can access access the blood results from the one hospital (in Bath) that processes their blood samples.
However, i attend a number of hospitals to which the surgery has no access, even though they are all in the same geographical region (Somerset and Bristol).

Edwin