Not to good of news

My little para family, my venous samples started coming in on my chart a online portal. The baseline pth was 75 the highest sample was 136. I e mailed my endo  because I have read online where samples can be in the thousands and some articles have said 2 times baseline so wasn't sure. My endo said to my eye no dramatic step ups we well need radiologist feedback on this. I am pretty down about this. I will keep on fighting to get well because that is what we do. Hugs to all.

Oh dear,its so disappointing when you have everything pinned on a positive result and it comes back possibly "normal". Maybe the radiologist will come up with something.

We have to keep on trying but oh boy it gets so tiring 

Nelly

Hi Kathi, I'm sorry that the results don't seem favourable so far, but perhaps the radiologist will have more ideas. You're a fighter, however endlessly tiring it is, and we're all behind you. Take care. 

Love and hugs 

Brigitte xxxx

Hi Kathi,
Thats dissappointing, but hang in there sometimes these little blighters are notourious hiders.
Take care

Diana xx

Don't be too downhearted Kathi, my venous sampling showed my 'hotspot' was putting out just over double the baseline level of PTH, so not a lot different from yours, and the radiologist reported that, together with the findings of the 4D CT, this was consistent with being highly suggestive of a parathyroid adenoma. Hopefully your radiologist will clarify things for your endo.

Jasmine x

Hi Kathi
I'm keeping my fingers crossed that the radiologist will see something in the VS that the Endo hasn't.
Love Amanda xxxx

Thanks all, I do hope the radiologist sheds some light on this. The radiologist is suppose to do the mapping also which I haven't seen yet. It is probably not done yet. The sample that showed 136 was sample 14 but I have no idea where that sample came from.

Jasmine thanks so much for your input, it means a lot to me.  Kathi

Hi Kathi,

This disease is such a rollercoaster of unhelpful results and unhelpful result interpreters. I'm really hoping you get a gem of a radiologist who really knows their stuff and can give you a bit more hope that a diagnosis may be in sight. 

136 sounds high to me, though I don't know anything about venous sampling. Keep us posted on your progress.

Love
Dee
xxx

Hi Kathi,
I hope you don't have to wait too long before you get the radiology report, I know it seems to take forever to make any progress.  I think my calciums and PTH are similar to yours together with the normal urine calcium.  I just wish it was easier to get a diagnosis and not be left feeling rubbish like this.  I hope you get some positive news soon.
Take care, Sue x

Kathi - even 75 seems high as a baseline to me (I divide by 9.43 for UK units which makes 7.95) so double that is twice the top of our scale over here. So if you have those readings with even just a high-in-the-range serum calcium, it looks indicative of a parathyroid disorder to me. Although the measurements in VS might be done/interpreted differently, so I'm not sure.
I hope you get some clarification soon.

Perhaps Jasmine can tell us how VS results are interpreted?

Love and hugs from Tigerlily xxxx

Oooops - sorry All - just noticed Jasmine's comments above.

I think both 75 and 136, and twice the top of the UK range (in Jasmine's case) are all certainly indicative of a PTH abnormality, but that's just the view of little ole 3-adenoma-me. My serum calcium peaked at 2.73 with a within-range PTH of 5.72. But it's the relationship of the serum Ca and the associated PTH from the same blood draw that is important. Under normal circumstances, with a serum Ca of 2.73, the PTH should have been undetectable, but instead it was "inappropriately unsupressed", as FP puts it, which possibly indicates an enlarged PTH gland pushing out excessive amounts of PTH.

(Sorry if I repeat myself in these posts, but like Audrey I prefer to give too much info rather than too little in case a new member is reading this and needs the info but has not introduced themselves yet.)

It's an important week for results, this one. I do so hope you hear something soon and that Jasmine get's the OK from FP for another (final) op.

Love from Tigerlily xxxx

Thanks pilipala, lucycatnap. and Tigerlily. I took what my endo said to much to heart. I just need to wait till he talks to the IR doc. Because he did tell me he leaves it up to the surgeon to send patients for venous sampling he rarely does, sooooo I think maybe he lacks some knowledge of it . Soon as I hear more I let you all know. XXXX Kathi.

I think you are right in what you there, Kathi, about lack of knowledge on the endo's part.

Hang in there for the extra information and keep us posted.

Love and Hugs from Tigerlily xxxx

So sorry to hear the results were not what you were expecting, Kathi, but if it helps any, I think most endos are dingbats, and I'm thinking the radiologist just might have more favorable news for you! Hang in there and don't give up!!!

Audrey