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endocrine team in agreement!

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Tigerlily
rach260190
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Post by rach260190 Tue Dec 16, 2014 9:57 pm

I had a voice mail today from my endo regarding a meeting she had with the whole endocrine team at my local hospital. 
They are all in agreement of the diagnosis of primary hyperparathyroidism. She left a message saying she will ring me again sometime this week. 
Hopefully she has now written to the surgeon with more evidence for surgery. I don't know when my next appointment is but I am so relieved that things are moving and they all agree with my diagnosis. 
I'm hoping I will not be turned down for surgery again now there is more evidence to support my case! 
I have so many questions and was wondering if anyone on here could suggest any answers.
how long have I had this as I am 24 ect. ....
I still think I could tolerate double the dose of cinalcet in the mean time, as the day goes on my symptoms seem to return as cinaclcet has a short half life. 
Although I'm sure it does not allalleviate all symptoms and my calcium still fluctuates. 
I'm the mean time I'm not sure what to do about working I can't really keep up anymore but I don't want to give up!

Anyway I am over the moon I have heard some more info before X mas and maybe I shall hear some more at the end of the week. 

Thank you too everyone who has helped me here and given me advice 

Rachel xx

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Post by Tigerlily Tue Dec 16, 2014 10:03 pm

Hang on in there, Rachel - you are nearly there - half the battle is over as you have your endo (and quite a few others) on side now!

I know what you mean about being unable to fully keep up at work. A number of forum members have mentioned this as a problem, especially the ones who work in the medical profession themselves.

Tell you endo about this, as it does strengthen your case for an early surgery.

Meanwhile, try and hang on until the Christmas holiday when you will be able to get some rest from all this.

Let us know how the discussion goes with your endo - and try and take it easy on the run-up to Christmas.

Love from Tigerlily xxxx

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Post by rach260190 Tue Dec 16, 2014 10:10 pm

Thanks tigerlilly!  

I'm wishing you a speedy recovery and a wonderful X mas free of your unwanted visitors haha!! 

My endo knows about my issues wish work as I am self employed and I am struggling keeping up it takes me a lot longer than anyone else to do things and I get overwhelmed very easily.  I am self employed so I won't receive any sick pay.

I know I'm not in the clear so to speak for surgery yet but I'm praying it will happen! 

What I'm wondering is, is this unusual for someone of 24 to have this ? My parents have had their calcium level checked.  My mum's was 2.34 and my dad's was 2.50.... I was a little alarmed at his as he Is 65. I have read that it's not normal to be that high at that age although it's still within the normal range.  I don't think he has has a pt hormone test.

Anyhow fingers crossed for everything! 

Lots of love xx

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Post by Tigerlily Tue Dec 16, 2014 10:26 pm

Your Mum appears to be OK, but 2.50 is high in the range for serum calcium, Rachel. It would be so good if he could persuade his GP to check PTH and Vitamin D for him. Perhaps you could ask him about the other symptoms of PTH that we know about, bone pain in particular.

I agree that calcium levels to tend to fall as we get older, hence all the fuss about osteoporosis and getting enough calcium etc.

Good luck with the talks with the endo - and keep us posted on developments.

Love from Tigerlily xxxx

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Post by rach260190 Tue Dec 16, 2014 10:38 pm

Thanks tigerlilly!  

I thought so..... He suffers with joint pain and similar symptoms as me and I remember him complaining of feeling weak and tired and the joint pain. But he had a heart valve replacement a few years back so maybe they would have picked up on something back then... He may never have had a pth test or vit d
I have asked him to have it checked but I will have to drag him there myself unfortunately!  

Will keep you posted 
Rachel xxx

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Post by Lucycatnaps Tue Dec 16, 2014 11:46 pm

Hi Rachel,
That sure sounds like progress to me, and hopefully you will not have to wait much longer until you are rid of this menace.  I know I would really struggle if I had to work full time, it takes me all my time just to engage first gear in my head sometimes never mind full throttle.  Most things seem to take me so much longer to get done nowadays or I keep forgetting things.
Take care of yourself
Sue x
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Post by Londanna Wed Dec 17, 2014 8:50 am

Hi Rachel

Just for information (and definitely not to alarm you) I was 21 when I had my first two paras out.   They were both hyperplastic and this year I was finally diagnosed with MEN 1.   My doctor's alarm bells rang as soon as I saw him and he suggested a immediate genetic test.   MEN 1 is an inherited disease, so maybe.....   Anyway, I expect your team will be investigating so dont worry too much.

Good luck and best wishes 

Anna

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Post by Brigitte0 Wed Dec 17, 2014 9:17 am

Great news Rachel and hopefully your Endo will get back to you with further information before too long and you can get everything sorted out and moved along so you know exactly where you are. Best of luck. 

Love and hugs 

Brigitte xxx
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Post by rach260190 Sat Dec 20, 2014 11:34 am

Sorry for the late replys somehow I was logged out and didn't get any updates.  Thank you all for your supports and messages.

Sue yes working is becoming really hard I just can't keep up! And get so tired ! Like you said everything takes me ages to complete whilst everyone eelse cracks on.

Anna thanks for your info. I've had a 24 hour urine test for menaphetsmines?  Is this a MEN test? What others are needed. My parnets are having their calcium pth and vit d done next week. I think my mum's okay but my dad's last calcium a few years ago was 2.5 it was not investigated further as that level is normal. I'm a little worried because of my age. 

Brigitte thank you ! 
I had a phone call yesterday to say I have an appointment at the end of Jan with the surgeon again.  In the mean time I have to have more blood tests to present to him to see that my calcium is stable I cinacalcet. If I'm still taking cinacalcet  and calcium is back up then ththat will stop the process and we maybe back to the begging. HoWe ever as the whole team are now in agreement then fingers crossed! 

Sorry for the late reply 

Rachel xxx

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Post by Londanna Sat Dec 20, 2014 3:27 pm

Hi Rachel

I dont know what the test you had was for as I have not heard of it before.   However the only way to test for MEN 1 is for a specific blood test usually counselled for and taken by a Geneticist.   As it hasn't been suggested to you, then I shouldn't think your doctors are concerned that you might be a candidate.   So please dont worry about it.

Good luck for the op, I am sure it will go fine and I hope you will feel a whole lot better afterwards.

Anna

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Post by Tigerlily Sat Dec 20, 2014 3:46 pm

That's good news, Rachel, about getting an appointment with the surgeon again so soon!

I'm pleased that your parents can be tested for Ca/PTH/Vit D. Do let us know what the results are when they are in.

Meantime, just slide down into Christmas and enjoy the festivities!

Love from Tigerlily xxxx

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Post by Brigitte0 Sat Dec 20, 2014 4:11 pm

Keeping my fingers crossed for you Rachel, but it sounds as though things are moving along well for you now. It's good that your parents are getting tested so everyone knows what's going on and do let us know the results when they come back. 

Take care. Love and hugs 

Brigitte xxx
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Post by rach260190 Sat Dec 20, 2014 5:16 pm

Thankyou for your knowledge Anna.  Gingers crossed I am accep ted for surgery,  trying to sstay positive but I could be turned down again.

Thanks too tigerlly, hope your feeling much better,

I have bblood tests booked for the 9th of Jan then 19th and hoping calcium is still stable.  It's hard to know if my phone problem is influencing my thyroid activity or the other way around. ... or just separate!  
Brigette,  many thanks Smile trying not to get my hopes up., but wishing. 

I have so many questions... I wonder if something trigged this or its just sporadic.  Also how many glands are the problem.  

Happy Christmas to everyone and I really appreciate all your help 
.Rachel  xx

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Post by Kathi209 Sat Dec 20, 2014 7:14 pm

Hang in there Rachel it sounds like things are moving forward, best wishing and Merry Christmas to you.    Kathi

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