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Calcium pro app

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Calcium pro app

Post by Amanda Lynne on Mon Aug 11, 2014 3:21 pm

Hi All
I have the calcium pro app on my iPad and I've just entered the last lot of results ( not the ones I had done a couple of wks ago but up to June) calcium and PTH plus urine calcium. Previously it said likely at the highest point.
Now it says very likely and it's on one point below the very top score. I know it's just an app but it gives me hope that FHH is unlikely as I would think it would be more of a possible/low likely score.
These were my last readings
30/5/14
Calcium 2.73. Adj 2.65 (range 2.1-2.55)
PTH 3.9
12/5/14
Calcium 2.70. Adj 2.62
25/3/14
Calcium 2.73. Adj 2.57
PTH 4.2
11/2/14
Calcium 2.69. Adj 2.57
My vit d is around 55
Amanda xxxx
Any comments either way gratefully received x 
Prior to having 1st adenoma removed my PTH levels were around 3.9-4.2 except on 2 occasions when they went higher but that was when I was first diagnosed and then they settled.


Last edited by Amanda Lynne on Mon Aug 11, 2014 3:30 pm; edited 3 times in total (Reason for editing : Forgot again)
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Re: Calcium pro app

Post by Amanda Lynne on Tue Aug 12, 2014 7:29 am

I'm worried now that I maybe the only one who doesn't think I've got FHH.
A xxxx
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Re: Calcium pro app

Post by Jasmine2 on Tue Aug 12, 2014 8:42 am

I can understand why you're feeling gloomy about the FHH shadow looming over you Amanda as I'm in the same boat. Pass me a paddle and let's get to shore! Although my numbers are slightly higher than yours they are fairly stable and apparently that's another factor for FHH. But like you I have had values much lower and within range in the past and my view is that with FHH they should have been elevated since birth, or am I missing something? Plus, with both of us having had an adenoma removed that proves we have had pHPT doesn't it, and to have both conditions coexistant is so incredibly rare surely it couldn't apply to two people who live within a couple of hundred miles (if that) from each other, and have the same first surgeon in common - could it? Mind you, such is the disregard with which Dr Norman is held in UK endocrine surgeon circles that I seriously think FP secretly doesn't believe that I had an adenoma removed, despite the photographic evidence, surgery report and pathology report saying that I did. I think he would prefer to think Big Jim tells porkies! That's the feeling I got from speaking to him about my Tampa surgery and I think it was based on the fact that in the UK excised adenomas are weighed as well, whereas at the NPC Tampa they photograph and measure them and record the amount of PTH they were producing which, according to FP, is a meaningless value. Hey ho .......

I don't think you have FHH any more than I think I do Amanda, and if we do then we clearly have both, in which case we deserve to be written up in the Endocrine Times!!!!!

Chins up, I'll meet you for a Mocha in the limbo land cafe..... Very Happy  I love you flower 

Jasmine x
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Re: Calcium pro app

Post by Jasmine2 on Tue Aug 12, 2014 8:47 am

Just a thought .... when M the K removed your adenoma the pathology report did confirm it as a parathyroid adenoma didn't it? If you recall my surgery with him he took out what he thought was a PT adenoma which turned out to be lymph nodes on the pathology report - epic fail!

J x
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Re: Calcium pro app

Post by Amanda Lynne on Tue Aug 12, 2014 9:04 am

Hi Jasmine I too think it's too much of a coincidence for us to have FHH and I'm sure something would be in our medical history to send alarms off before now.
Yes pathology confirmed adenoma removed, even Endo said that. I do recall when I saw MTK and he looked at my US from my local hospital he said he thought he could see something else on there which he thought was the adenoma and not what they had scanned. As what they looked at was 3/5mm and what he saw was bigger and what was removed was 1.5cm. So was there something else there all along !!!!
I don't know, I just feel so unwell at the moment that if FHH is confirmed I need to know if I'll feel like this forever or is there something else causing this ? 
I'm still banking on pHPT I know the calcium pro app is a bit pie in the sky but can it be so wrong ?
Chins are a bit shaky but I'm trying to keep them up enough for a treat in that limbo land cafe. Very Happy  I love you 
Love Amanda xxxx
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Re: Calcium pro app

Post by Brigitte0 on Tue Aug 12, 2014 9:23 am

I don't know much about FHH but surely it would have come up at some point in both your lives before now? You would have thought. And nobody thought or mentioned FHH when either of you had pHPT and had adenomas removed did they? It seems ridiculous, like clutching at straws. 

I wish I could help: apparently movie me's wand is a fake and won't work, alas. I have sent some tokens to the Limbo Land Cafe so have some drinks on me. And lots of cyber hugs. I might not be able to help, but I'm good at hugs Smile

Love 
Brigitte xxxx
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Re: Calcium pro app

Post by Amanda Lynne on Tue Aug 12, 2014 9:49 am

Thanks Brigitte, hugs are in much need at the mo.
 I love you 
Amanda xxxx
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Re: Calcium pro app

Post by Jasmine2 on Tue Aug 12, 2014 1:42 pm

Amanda, I forgot to say that I have the Calcium Pro app too and have been feeding all my numbers in since my surgery in February (I did it pre-op too, didn't expect to be doing it post op...!). The needle is currently sitting about a millimetre from the top of the very likely grid! 

Thanks for the hugs Brigitte, can never have too many hugs ......  flower 

J x
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Re: Calcium pro app

Post by Amanda Lynne on Tue Aug 12, 2014 2:32 pm

Hi Jasmine that's exactly where mine is. I didn't have it pre op so not sure but as my numbers are virtually the same I'm sure it would say the same.
Amanda xxxx
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Re: Calcium pro app

Post by Tigerlily on Tue Aug 12, 2014 7:30 pm

Hi Ladies

I'm no expert on FHH but just wanted to send hugs and wishes for chins up - and we'll all be saying "chin chin" at The Ritz, won't we?!

Lots of Love from Tigerlily xxx

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Re: Calcium pro app

Post by Kathi209 on Tue Aug 12, 2014 9:51 pm

I think FHH is so rare that the chance of either one of you having it is one in a million. In my opinion you are both doing the right thing in being tested. I can't hardly believe that that you had a adenoma out once and now they think its FHH. But sometimes it good to get the darn FHH out of the doc's mind so he can get on with fixing you.

I googled the Ritz what a lovely place, that is probably the closest I get to it. But all I can say it wow. Best of luck. Chin up.   Kathi

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Re: Calcium pro app

Post by NancyMi on Wed Aug 13, 2014 12:28 am

Amanda, 
    I don't know enough about FHH but that condition isn't associated with pronounced synptoms is it? 
    Amanda,  it sure sounds like M the K really saw something else on your US. 
I am keeping both you and Jasmine in my heart. 

I  think the calcium pro-ap is accurate. 

Nancy

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Re: Calcium pro app

Post by Tigerlily on Wed Aug 13, 2014 8:58 am

Bless you, Kathi - you'll have to come over to The Ritz with Audrey who is determined to come whatever happens. Should be a while yet - we'll probably be able to teleport you both over by then!!
Love Tigerlily xxxx

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