Newbie with a high PTH test result!

First topic message reminder :

Hi everyone


I'm a newbie here and I'm very new to the wonderful world of parathyroids!


Along with being hypothyroid and having Hughes Syndrome it now looks like I've got another 'thing', just got a PTH result back;

Serum parathyroid hormone 10.4 pmol/L (1.6 - 7.5 pmol/L)

Corrected serum calcium      2.36 mmol/L (2.2 - 2.6 mmol/L)

Total Vitamin D                  144.2 nmol/L adequate (taking 9000 IU daily under guidance of endo)

25-hydroxyvitamin D3        129.2 nmol/L

25-hydroxyitamin D2           15.0 nmol/L

Phosphate                              0.73 mmol/L (0.8 - 1.5mmol/L)  (taking 6 phosphate sandoz tablets per day)

I'm still having huge issues with joint and muscle pain, lethargy and swelling, all of which temporarily vanished when I was recently on holiday in Australia but is now back with a vengeance!

My GP wants to speak to me and I have a phone consult with my metabolic bone disease specialist soon but if anyone has any thoughts or experiences of all this parathyroid stuff in the meantime I'd be most interested 

So glad you've heard of him Mischka - keep us posted, Tigerlily xx

Hi Mishka,

I am one who has not been on here much over the summer.    Just so much to do during the warm weather, and with all of my doctors' appointments and tests, I have been very busy.

I'm so sorry you're having so much trouble.   I hope we can help.

Tigerlily asked about your serum calcium level.    You mentioned that it hovers around 2.3 or so.    I noticed you mentioned your corrected calcium was 2.36.   I was wondering if there is some confusion here.    I need to get this straight, because in order to help diagnose you, I need the serum calcium and not the corrected calcium.

I am wondering if possibly your PTH is elevated because maybe your normal calcium level is higher that 2.3.   Therefore, your parathyroids are secreting ore hormone to raise that level some.    I always have to convert these UK levels to US levels for me to better understand them, since I am in the U S.     A calcium of 2.3 in the UK converts to 9.44 in the US.    Your PTH of 10.4 converts to 103.72 in the US.    

That being said, when I first started having trouble with my parathyroids, my calcium was only 9.8, which is very similar to yours, and my PTH was 112.0, which also is very similar to yours.    My levels were slightly higher than yours, but not much.    So I think this could go either way for you.       In order to get a better idea of how your parathyroids are functioning, you would need several more calcium and PTH levels, and like I said, your age would help to figure this out too.

I had 2 parathyroid tumors removed 22 months ago.   I also suffer from hypothyroidism, hyporenemic hypoaldosteronism, and an iron deficiency.      I am currently working on the iron deficiency, which I think has been causing a LOT of my remaining symptoms.

I do hope we can help you figure out your issues.   Many of us have a lot of experience with all of this crap, unfortunately!   

Audrey

Hello Audrey and thank you for your reply.

We do sound rather similar - I have finally got my iron deficiency sorted and it has made a huge difference to the way I feel, I hope you can sort yours too

I only have 2 results for serum calcium, both were taken in 2014 when I was 42

2.35  (range 2.1-2.55)

2.2    (2.2-2.6)


Thank you again, and good luck with your iron levels!

Thanks for listing those levels Mishka.   Did you have the PTH tested with both of those calcium levels?

Thanks also for the encouragement regarding the iron issue.    I sure hope it does make a big difference.   I'm really counting on that.   I blamed all of these symptoms on the hypothyroidism, then I blamed them on the hyperparathyroidism, now I'm praying they are from the iron deficiency.     I'm really hoping this is the last piece to the puzzle!

Good luck to you too!   If you do have HPT, I hope it's revealed soon, so you can have surgery and feel better too!

Audrey

Hello everyone, I hope you are all ok

I've had more above range PTH results and low ish calcium but strangely my phosphate is now nicely in range after stopping the tablets months ago!

I've finally been to see Mr Levy and the first thing he said to me was 'everything is just about in range'. Here we go again I thought!

He mentioned secondary hyperparathyroidism but  has firstly suggested a synacthen test, growth hormone and IGF1 (I think that's what the blood form says, his writing isn't great!).  I had a car accident recently so thankfully these tests won't be done for a while, the whiplash is pretty painful and needles aren't my favourite thing ever so I'm grateful for a few weeks break!

So that's kind of where I'm at just now, hopefully these results will make things a little clearer. 

As ever if anyone has any thoughts I'd be most grateful to hear from you

Nice to see you back, Mishka!

Your calcium levels do seem to be normal, but your PTH is riding a little high.

Have you ever had your Vitamin D tested? It might be a good idea if you could stand getting it done and if your GP would order this. Secondary hyperparathyroidism can be due to a few things, but the most obvious one is a Vit D deficiency.

It's good that Dr Levy is looking after you. He does seem to know his endocrine stuff!

If your Vit D is low, however, this might be significant. 

Best of Wishes, and keep us posted - Love from Tigerlily xx

Hi Tigerlily, hope you're well?

I am on vitamin D, my level was 19 when I got diagnosed as deficient. I felt incredible when I first started on the Oxford protocol, I 'woke up' and had a zest for life that I've never had before. Sadly that didn't last very long and although Mr L agreed vitamin D was the key he wouldn't take this further. He suggested I emigrate!

I must admit I do feel quite frustrated today but I know that other things should be ruled out first!

Hi Mishka!     Glad to here you're getting somewhere with all of this.     It is normal for your PTH to be a little high if your calcium is lower than your body would like it.  I'm sure you know this.   If it helps any, when my PTH was first tested, it was 112.0 (11.9 in UK numbers), and my calcium was 9.8 (2.45 in UK numbers).   I first thought your case sounded like secondary, but your levels are not that much lower than mine were when first tested.   However, my calcium continued to rise over time, and even though my PTH decreased some, it always stayed inappropriately high for my calcium levels.    If you could post all calcium and PTH levels here, I would be happy to take a look at them.   Be sure to post the PTH and calcium levels together from each blood draw.   

Audrey