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CaSR genetic blood test

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CaSR genetic blood test

Post by Amanda Lynne on Tue Jun 24, 2014 4:51 pm

Hi All 
Just got phone call to book me in for CaSR genetic blood test for FHH, they wanted to do it in 3 wks time but I wasn't having that and said it wasn't acceptable. Eventually got it booked in for 10 am at hospital by Endo nurse. It still won't be back by my appt with Endo 11/9/14. 
At least it will be done.
Amanda xxxx
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Re: CaSR genetic blood test

Post by Jasmine2 on Tue Jun 24, 2014 6:07 pm

Glad you kicked up and got it sooner than three weeks Amanda, well done you for fighting your corner! We're all getting really good at that aren't we, fighting our corners, in addition to becoming expert patients! Case of having to be .....

Got my bloods back from yesterday Ca 2.7, corrected 2.65, PTH 7.9 both higher than the last lot but they'll still be wanting to pin the FHH badge on me no doubt! Seeing Miles Levy again on Thursday to sort out all the tests for pituitary, MEN etc and no doubt he'll repeat all the usual stuff as well.  It's a bit soon after seeing FP but it's stuff we agreed to do in the meantime and because of Dr Levy's commitments and my holiday I wouldn't have got to see him until mid August and I want it all done and the results in by the time the CaSR report comes back. Slow progress for us both Amanda, but progress nevertheless ..... chins up, face forward, keep going ....

Jasmine x
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Re: CaSR genetic blood test

Post by Amanda Lynne on Tue Jun 24, 2014 6:28 pm

Hi Jasmine
Your bloods seem indicative of PTH disease, anyone else who hadn't had the other ops would be diagnosed. The problem is although we have had ops before, unless someone has checked all 4 there is no way anyone can say we haven't got something else in there and as we both have tons of symptoms my guess there's at least one more hiding in there for both of us.
We do have to fight our corner and if we don't there's no back up from any of the medical profession (hopefully FP being the exception)
My chins are firmly in the up position, bags stowed safely under seats, face forward, exits here, here, here and back there Arrow 
And onwards we roll.
PS I wonder if our genetic tests are in same batch. I hope yours is underway already and not waiting for us late arrivals !!!!
Love Amanda xxxx
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Re: CaSR genetic blood test

Post by Amanda Lynne on Wed Jun 25, 2014 11:12 am

Blood test done, apparently it will be with test lab by Friday. I managed to get a telephone number for there and when I know they've got it I'll give them a call to see how long it will take.
Amanda xxxx
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Re: CaSR genetic blood test

Post by Tigerlily on Wed Jun 25, 2014 12:04 pm

Well done, J & A - your comments are a true testimony to the possibility that the system can be bent somewhat to get things moving at speed.

we really have to do this - and you both did - I am so impressed!

I managed it myself today as well - see new topic "MRI at last to rule out pituitary adenoma".

Love and Cats from Tigerlily  cat  bounce  cat  xxxx

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Re: CaSR genetic blood test

Post by Kathi209 on Wed Jun 25, 2014 8:08 pm

Good for you Amanda, the sooner you can rule that out and move forward the better. I hate it when the doc's get wishy washy about the lab results and the minute you think your getting somewhere they start in with WELL it could be FHH that makes my head spin totally around. Then your still waiting for the next set of labs so he can tell you another story and on and on it goes. Kudo's to both you and Jasmine for getting this done and off the table. I guess I'm a little grumpy to day.  cyclops  Best of luck to you  Kathi

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Re: CaSR genetic blood test

Post by Amanda Lynne on Wed Jun 25, 2014 8:49 pm

Hi Kathi
I so agree with you, if this tests takes 3 mths which is what I've heard the results won't be back by the time my appt with Endo, so I'll go there for absolutely no reason and then be given another appt for 3 mths again that makes it Dec and that will be a full year from my first appt without anything other than blood tests a couple of 24 hr urine and this genetic test.
I think that is absolutely ridiculous and a disgrace and all the time I'm feeling worse.
I also asked last week for all my results as I have nothing in writing and I have had nothing, it's making me feel as though I'm just a nuisance and I should just go away and get on with it, it's almost as if I have to beg to get any information and I'm not entitled to anything and I should be grateful for what I am getting.
Sorry for the rant but I'm just fed up with it all.
Amanda xxxx
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Re: CaSR genetic blood test

Post by Brigitte0 on Wed Jun 25, 2014 9:06 pm

Amanda, you carry on ranting and get it off your chest: you know we listen and sympathise and understand. I do feel annoyed on your behalf, but never let yourself think you are a nuisance or as though you should go and get on with it! No way! I'm sorry you have to go to so much effort for so little gain, but you *are* standing up for yourself and you *are* getting somewhere, however slowly. Keep on keeping on and take away loads of hugs and support from me  Smile 

Take care and loads of hugs and love
Brigitte xx
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Re: CaSR genetic blood test

Post by Amanda Lynne on Wed Jun 25, 2014 9:12 pm

Thanks Brigitte.
A xxxx
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Re: CaSR genetic blood test

Post by Jasmine2 on Wed Jun 25, 2014 9:53 pm

Hi Amanda, bit pushed for time tonight for a longer reply but very quickly, re your Sept endo appt, you're probably right about not getting your CaSR report back in time and if history repeats itself you'll have another three month wait between appts - why not ring up the appointments line and say there's a possibility you may not be able to make that one and how much longer might you have to wait to reschedule it, if it's only a few weeks it might be worth taking a chance and putting it back a bit to guarantee the results being available, having already rung the lab for a guesstimated (say you're trying to arrange endo appts around booking a holiday or something) turnaround time then you can make a better informed decision on whether to put back your appt.

Re getting your results, you could grab the bull by the horns and ask for everything? :

http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/what_to_do.aspx

Just a thought or two......

Jasmine x
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Re: CaSR genetic blood test

Post by Amanda Lynne on Wed Jun 25, 2014 10:05 pm

Thanks Jasmine
I'm thinking of doing exactly that re the appt, I am going to ring secretary tomorrow to see what's happening re results if not I will go down the route of requesting them from the records dept.
Love A xxxx
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Re: CaSR genetic blood test

Post by Tigerlily on Wed Jun 25, 2014 10:59 pm

Amanda - I've requested records lately and it's no big deal - you just get the appropriate form, fill it in, take it back with the fee and they then provide the record copies.

The Medical Records staff have been well trained in my opinion and are very helpful.

Try to collect the form and take it back yourself, as posting anything to the NHS seems to take an age to get there, same as them posting anything out.

Lots of Love from Tigerlily xxx I love you  cat  I love you

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Re: CaSR genetic blood test

Post by Amanda Lynne on Fri Jun 27, 2014 10:04 am

I actually feel that every single person I deal with over this is deliberately blocking any chances I have of being diagnosed Sad all I am requesting is blood and urine results !!!
I rang Endos secretary this morning there's a message on her answer phone saying she is on holiday until 17th July and will deal with any messages on her return. So I managed to find another secretary's number in dept, spoke to her but she will not deal with me as she doesn't deal with my Consultant.
So I thought I'd try the genetic testing lab the Endo nurse told me to ring to find out an estimation of time it takes. Woman on end of line most surprised I'd contacted them said they couldn't discuss it with me only the consultant. Sad
A x


Last edited by Amanda Lynne on Fri Jun 27, 2014 10:05 am; edited 1 time in total (Reason for editing : Forgot something)
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Re: CaSR genetic blood test

Post by Amanda Lynne on Fri Jun 27, 2014 10:51 am

Right I managed to get another Endo secretary's tel no. and rang her, explained the situation and the reply I got was..........
You can send me an email explaining the situation and what you want and when Endo comes in on Tues I'll ask her but don't expect them as there maybe a reason why she doesn't want you to have them !!!!!!!!!!!!!!!! 
OMG they are my BL@%£Y records what a cheek.
I've looked up how to request them through patient records but it takes around 40 days and can only be done in writing. So I guess I'll have to wait until Tuesday to see if I get any joy.
I have in the mean time written to the other hospital I have dealt with to see if there's anything in my history which would indicate FHH.
Life is full of joy  Very Happy  Mad  Rolling Eyes  No 
Love Amanda xxxx
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Re: CaSR genetic blood test

Post by Amanda Lynne on Sat Jun 28, 2014 8:35 am

All I seem to be doing is moaning ATM  Neutral 
Sorry if it's annoying, the sun is shining again today, I will be a happy person  sunny 
Amanda xxxx
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Re: CaSR genetic blood test

Post by Brigitte0 on Sat Jun 28, 2014 8:52 am

No, Amanda, you let it all out here and complain away! I'm sorry you're having so many problems: it's the story of our lives isn't it  Sad I'm here in supporting mode for dishing you out lots of hugs at least. I'm just having some baaaad days at the moment so I can't get my brain to read, understand and follow up with wise words. But the hugs are plentiful! 

Take care and keep on keeping on. 

Love, hugs and brain fog 
Brigitte xx
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Re: CaSR genetic blood test

Post by Jasmine2 on Sat Jun 28, 2014 9:25 am

Uuuuggggghhhh! I just posted a reply to Amanda and mine went to a blank page as well like Audrey's!!! My post wasn't that long Edwin ...

Anywaaaaay ........ ! Amanda, you moan and groan all you like, you've earned the right, all day every day if you need to vent.  That's what we're here for (just had to think really hard how to spell 'here' grrrrr!) to listen, empathise and help pick you back up in the same way as you've done for all of us HUNDREDS of times! Glad you're having some sun though, we've had two days of Dr Aud's Pittsburgh torrential wet stuff with a good measure of thunder and lightening thrown in  What a Face

Sending cyberhugs, lots of love and some cats (Tigerlily, you've started something here girl!)  cat  cat  cat 

 I love you  I love you  I love you 

Jasmine x
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Re: CaSR genetic blood test

Post by Meggy on Sat Jun 28, 2014 9:38 am

How frustrating for you, they are your records. Feel free to moan, heaven knows you've helped us often enough:-)

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Re: CaSR genetic blood test

Post by Amanda Lynne on Sat Jun 28, 2014 10:17 am

Oh no I just typed a long message to the lovely Ladies above and it's just been wiped off screen What a Face 
I'll try something shorter !!! Thank you so much for your kind thoughts and hugs it's very much appreciated I love you 
I've contacted my siblings re calcium levels.
Twin Sister adjusted 2.48 range up to 2.60 PTH she thinks under 2ish !!
Older Sister never had it done.
Older Brother could possibly as had heart ablation surgery, no reply despite a few requests (there's a bit of family history there!!!)
I am trying everything I can to rule out FHH connection shame consultant isn't of the same mind (maybe they get a gold star or a pay rise if they find a FHH patient !!)
Brigitte thank you for all the hugs, I fully understand the brain fog, whilst trying to make all these phone calls it's a major effort not to dissolve into a gibbering idiot loosing track of what I'm talking about. It's as if a connection in my brain has come unconnected. I've even developed a slight stutter which is awful Crying or Very sad 
Thanks Jasmine I know you understand just how hard it is for me at the moment I love you 
Meggy thanks and I know we all support each other so much and I really does help in the difficult times.
Much love to you all.
Amanda xxxx


Last edited by Amanda Lynne on Sat Jun 28, 2014 10:18 am; edited 1 time in total (Reason for editing : Forgot stuff)
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Re: CaSR genetic blood test

Post by Tigerlily on Sat Jun 28, 2014 3:07 pm

Rest up for the weekend, Amanda. I had a grim old week last week as well and the "fire alarm secretary" copped it all. Glad she was strong enough to take it!!

I think it's a tribute to all of our brain power that we are still able to talk intelligently to people whilst in gibbering idiot mode. I had to raise my voice a bit last week, but I impressed myself when I got into full flow!!

We'll both get back on our horses on Monday to continue tracking all the bloods and paperwork but, as the indomitable Dr Aud has said, soon it will be "Hi Ho Silver and Adios Adenoma!!"

Cats, cats, cats  cat  cat  cat !!!       I find that Adios thing just so funny, it makes me feel better every time!

And I love your Harrison Ford image, too, Amanda, with all the medics squashed under it!! Inspired!

Keep us posted on developments - Love from Tigerlily  I love you  I love you  I love you  xxx

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