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Endo Appointment

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Endo Appointment

Post by Amanda Lynne on Thu Apr 24, 2014 6:01 pm

Hi All
Just got back from Endo appointment, saw the Registrar AGAIN I'm obviously not important enough to see the organ grinder !!!
Welllllll calcium still up they measure it up to 2.50 (strange everywhere else is 2.60) and over that is considered high. 
2.74 adjusted 2.57 PTH 3.59 so she said PTH is inappropriately raised for level of calcium. At this point I was nearly putting the words in her mouth!!!!!!!
But urine calcium is low ish so I need to do calculations to check for FHH (as anyone who has read Jim Normans site will know that is highly unlikely even if urine calcium was v low) but she said if that isn't the case (I will ring you tomorrow with results) I will refer you back to your GP so you can choose which Surgeon and hospital you want to be referred to for re surgery as we think !!! You have another one in there.
I'm now concerned that she will ring and say its FHH (if she does I'm going to get the Tampa info and prove this isn't the case) otherwise I will get apt to see GP and ask for referral to see F Palazzo at Hammersmith.
Blood pressure up blinding, headache but I feel as though I'm almost there. Just wish it was definite, until I get that last confirmation I'm still in limbo.
Amanda xxxx
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Re: Endo Appointment

Post by Amanda Lynne on Thu Apr 24, 2014 6:03 pm

PS
All thyroid, pituitary levels are well within the normal range so that's v good news.
A xxxx
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Re: Endo Appointment

Post by Linny on Thu Apr 24, 2014 6:30 pm

Hi Amanda
Dare I say woo hoo! It can't be FHH can it? I don't wish another op on you but you need that referral girl! I have seen other labs where 2.5 was top end for calcium but in your case it helps the cause I guess. Hope you get the news you want tomorrow   Hammersmith bound.....is that or could it be a song title?  I love you 
Love Lynn xx

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Re: Endo Appointment

Post by Amanda Lynne on Thu Apr 24, 2014 7:28 pm

Hi Lynn
I'm singing it lalalala  Laughing  lol! Amanda xxxx
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Re: Endo Appointment

Post by Jasmine2 on Thu Apr 24, 2014 8:20 pm

Yippee! A giant leap forward Amanda! I'd be flabbergasted if you've got FHH, but she's right to rule it out.   So close now .....

I had a reply back from Robert Hardy; he was very nice but he said, given my complex surgical history, whether he could help me or not depended on the answers to a few questions about my surgery in Tampa, which I couldn't answer so I've had to email Dr Norman a bit sooner than I wanted to really, now waiting on a reply from him.  I just hope I don't get a smoking email from him insisting I'm cured and that my doctors are goats and monkeys.......

Jasmine x
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Re: Endo Appointment

Post by Little Audrey on Thu Apr 24, 2014 8:45 pm

Yay for Amanda!!!!    cheers    This is great news!   One step closer to being well again!!   So happy to hear this.  It's good they are ruling out FHH, but I too think it is HPT.    I would like to add here that before my surgery, my urine calcium was always in the normal range.   I am proof you can have HPT with a normal urine calcium.   Heck, I also had a normal ionized calcium, no osteopenia or osteoporosis, and no kidney stones.    I am a total freak, I guess.    Smile 

I couldn't help comparing your levels with mine, though, and if your PTH is thought be be inappropriately high, I guess I need more surgery too!    I converted your numbers to US numbers, and if I didn't do it too hastily, I came up with calcium 10.0 and PTH of 33.9.     My post op levels have been calcium 10.2, PTH 26.8; calcium 10.0, PTH 38.0, and calcium 10.2, PTH 31.7!    Oh crap!!    I have been thinking this all along, but really didn't want to believe it!   Well, maybe that would explain why my symptoms are still hanging on as long as they are.    I was just thinking the other day that as nice as my scar looks now, wouldn't it be a shame if I needed more surgery.   Oh well.

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Re: Endo Appointment

Post by lozza on Thu Apr 24, 2014 9:12 pm

Hi Amanda
 
Imperial college have an online calculator for Fhh-link is
 
 
www.imperialendo.co.uk/HammersmithCaCr-Calculator.xls
 
you just need to enter amount in each column and press enter to recalculate your levels or work out calculation as describe, for those you are good with maths, ( not me)
 
 
Can I check, what are the reference ranges for the PTH- I was just wondering as the lowest  PTH level I have had is 7.5 highest 11.7 and still they won't say what I have.
 Addenbrookes also have calcium ref range to 2.50, while York was 2.6- strange how they are all so different.


Sounds like you are very closed to getting all of this confirmed,why are we so pleased to be told finally what we have. In a way this should be a shock, but all these endo appointment and bloods that we have , I know I am totally exhausted by it all. We shouldn’t really have to go through all of this, should we?


I can't believe i am say congrats to someone being told that they are ill- but you know what i mean, it's the journey we go through, i wish you all the best.


keep us posted.
sorry for the different colour text, having a pc nightmare!


best wishes


Lozza Very Happy 
 
 

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Re: Endo Appointment

Post by Little Audrey on Thu Apr 24, 2014 9:32 pm

Lozza, with PTH levels that high, unless your calcium is very low, I would say you definitely have hyperparathyroidism. I am sorry that I can't keep all of these cases straight, but have you been diagnosed yet? I don't know how many times you've had your levels tested, but if your PTH is repeatedly that high, unless your calcium is very low, there certainly is a problem. Would you mind sharing your calcium and PTH levels? Again, I'm sorry if you have already posted this, and my brain just isn't functioning!

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Re: Endo Appointment

Post by Admin on Thu Apr 24, 2014 9:38 pm

Different ranges is because of different assays associated with different manufacturer's equipment.

This is why it is always important to have the ranges along with the results.

Edwin
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Re: Endo Appointment

Post by lozza on Thu Apr 24, 2014 9:46 pm

glad the FHH calculator is of some use, i have been doing a lot of research regarding parathyroid and working out what is going on with me.

regards

Lozza


Last edited by lozza on Fri Apr 25, 2014 10:12 am; edited 1 time in total

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Re: Endo Appointment

Post by Amanda Lynne on Thu Apr 24, 2014 9:57 pm

Hi All thanks for all the good wishes even though I have to wait for FHH results, as there are no other family members with calcium problems including my twin who has very normal calcium I'm hoping it's not that.
I don't know what calcium urine level was, I didn't get round to asking darn it.
The calcium level was one of the lower ones I've had. Most are around the 2.67 mark. I can't remember I think it's 2.5 to 6 ish I haven't got levels to hand but prior to my first op my levels were very similar to these and I only ever had 2 high PTH levels.
I'll write more when I've had call tomorrow, I'm rather tense ATM waiting for FHH results.
Amanda xxxx
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Re: Endo Appointment

Post by Admin on Thu Apr 24, 2014 10:08 pm

The FHH calculator has been added to the reference section.

Thank you for finding this, lozza.

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Re: Endo Appointment

Post by Little Audrey on Thu Apr 24, 2014 11:04 pm

Wow, great job, Edwin! Thank you for all of your trouble with this forum. We do all greatly appreciate it!

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Re: Endo Appointment

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