Parathyroid Disease can anyone help!!

[birkie]

Good morning everyone ❤️

I've been on this marvellous site for a few years now and would just like to thank everyone who has replied to me and helped me over these years, big thanks to slowdragon for all her imput over this last year or so.. ❤️❤️.. I had my thyroid removed due to graves in 2019 that in its self was a very rough journey especially getting diagnosed, unfortunately in the last year due to me having thyroid blood work done I have noticed my calcium levels have been going up then back down, last year in aug/Nov I also had 2 raised PTH levels along with raised calcium, they consist of:

Calcium

2.58....range.. 2.10...2.60mmol/L

2.61..

2.79..done 1st Feb.. 2021 last one

_____________________________________

PTH.. 8.6...range... 1.6...6.9..pmol/L

9.5.....last one done in Nov 2020

I have been on vitamin D supplements for about 4 months this has lower my PTH levels as my endo said low vitamin D can cause high pth levels, its come down from 9.5 to 4.4, unfortunately I am having a lot of hyperparathyroidism symptoms I know what they are as I was diagnosed in 2004 with it, then it was down graded to possible onset of hyperparathyroidism, after this I moved surgerys as I was getting nowhere, my new gp sent me to Newcastle where after some tests I was diagnosed with ME/fibro so that was that, as I said just recently my PTH and calcium has risen, I requested my records and was horrified to see over several years my calcium had been going up and down for years but no gp took any notice even though on 2 it says SEE DOCTOR!!.

I was recently put in touch with an endo in Newcastle who specialises in parathyroid disease, we have spoken on the phone he knows all my results ect and has himself said the probability of me having hyperparathyroidism is high, he did a genetic test for calcium which was negative, but he still refuses to go any further helping me again he wants more blood tests saying wait until 6 weeks this is unacceptable to me as I'm suffering 😠😠😢😢.. I have relayed this to my gp and requested a meeting with an endo near to me, I'm just waiting on the app, can anyone give me any advice on how I should approach this subject with the specialist.

So sorry for the long post🙈

Thank you ❤️❤️

[Angel20]

Hi, there, my sister had operation to remove 1 gland, she had high calcium levels etc. The endo can be helpful up to a point, however, he or she will need to work with a specialised surgeon, the endo is not specialised, therefore, you need to be seen by the surgeon doctor so he can discuss your case with you the best way forward. This is what my sister, did, she worked with her endo, and was seen by the specialised surgeon who took over from the Endocrinologist. My sister had one gland removed and then approx 1 year later her calcium levels were still high, she underwent another operation and had a second gland removed she is doing just fine. You may find the following link helpful be informed. Good luck

parathyroid.com/

[birkie in reply to Angel20]

Hi Angel20 ❤️Sorry for the late reply, thank you for the info.. It really makes me mad that my surgery has done nothing about my raised calcium and raised PTH.. As I said I was diagnosed in 2004 with it, its been like this for years goodness knows how long my calcium and pth have been going overactive for, but I known I've never felt really well since 2004, I'm hoping the endo sees the results of my bone scan as I have ostiopeania and my knee xrays as that's ostioporosis, these are linked to untreated hyperparathyroidism. I tick all the boxes for the symptoms but they were diagnosed as ME/fibro..

Many thanks ❤️❤️