help

[chellat]

Hi.
i am new to this forum so please bear with me.   I am end of the end of my tether with feeling so ill all the time.  Every single part of my body aches beyond belief,  most of the time it feels like i have gone 20 rounds in a boxing ring.  I'm always shattered but can't sleep great bse everything aches......got depression, have a constant water infection, got kidney stones and have had kidney stones removed key hole surgery.
My consultant has said that my parathyroid are not working as they should be but i don't no how bad it is...can some please help or explain to me.

Two weeks ago my PTH level was 349 ( was 198 before Xmas)
My calcium level is 2.74 ( should be between 2.20 - 2.60).
my Phosphate is 0.78 (should be between 0.80 - 1.45)
My Corrected calcium is 2.78 ( should be between 2.20 - 2.60)
My Alkaline phosphatase is 1.23 ( should be between 30 - 115).

Also my urine is showing high excretion of uric acid, calcium and oxalates....


Any information would gratefully welcomed
Thanks
chellat

[chellat]

Hi.

Thanks for the words of support.  Aw bless you its a nightmare when you feel like that though and it cannot be easy for you also, esp since you are not sure what is it that is causing you too feel like that.  Have you had all the tests then, ie for thyroids or a full blood count inc iron levels?  There must be something there if you are feeling like you do.   Could it be that you are depressed maybe?  I'm only saying that because sometimes bad depression could make you feel like that but i suppose only you would know how you feel......( thats something else i have)......and take anti depressants for it... there are days when i just want to curl up and die......it was a struggle just to get out of bed in the mornings...
I am praying that i get some reflief as its sooo hard running around after 2 kids too.....
don't give up though and your right we will all get through it one way or another.  It has taken me three years and almost having a breakdown in front of my urology cons that they have found my problem...... so there is light at the end of the tunnel....
so chin up and take each day as it comes...

Really hope that the docs finds something that can help you too..
take care and thanks for replying.......

[chellat]

Aw thats really kind of you helping people. such a nice person to do that.
yeah sorry my mistake i mean't to write hols not hold - sorry lol.
To get things done in the Uk is a nightmare to be honest.

I have been struggling to find a private consultant too... so it seems i am going to have to wait for the NHS.  Have been given the date 25 August....

Thanks again for the advice and yeah i won't give up there is some light at the end of the tunnel.....

[jenniferk86]

I cannot offer you any advice but I can offer you support, I feel exactly as you do, only all my labs come back normal :( So mine isnt treatable until I figure out what the heck is going on. I dont have a water infection or kidney stones but I do feel like I have a severe flu every single day for the past 6 months and fatigue beyond belief for the past year.  I have read that people with heperparathyroidism have all the complaints you do and get relief from treatment.  At least there is hope in sight, and we will all get through no matter how much we feel like we can't and things will get better even if it is slowly, but it is hard when we feel like we can't cope and we would rather die, even when our lives besides our health can be seemingly great.  

[Barb135]

No, I don't have hyperparathyroidism, but I try to do as much research as possible, in order to be able to help as many people as I can.  

I guess if it were me, I would want some more specifics before going to surgery, but I know things are done differently in UK than they are here in the US, and you might not be able to get that.  

Your terminology is different from ours, so I'm not sure what going on "hold" is - is that going on holiday (vacation)?

Do not give up; you can get through this.  

[chellat]

Hi,

Thanks for replying!

yeah i have looked at that web site and i agree its really good.  Did get a bit confused but got it in the end.

Thats the thing, my consultant didn't say how many wasn't working and he has not done any other imaging neither.  I was expecting more scans and did ask him why and his reply was, he doesn't need to have scans as they  sometimes cannot pin point the gland is not working.  He stated that bse my calcium levels are high he is going to do a full exploration surgery and check all four of them and remove as much as he thinks he needs to without having to have another operation.

So to be honest i really don't know, all i know is that i cannot carry on feeling like i do when i have two young children to look after.....

He has stated that he could book me in for june 9th but July 9th i'm off on hold for a month and to be honest i think its too close to my hols even though he did say that i should be ok?  losing the will here....

So i gether that you also have hyperparathyroidism?  How do you cope with it if you don't mind me asking?

[Barb135]

It sounds like you have hyperparathyroidism.  A really good website to get information is the following:
www.parathyroid.com

You have 4 parathyroid glands; did your doctor indicate how of them might not be working properly.  Have you had any imaging (ultra sound, CT, MRI) done?