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Post by Adele2 on Sun Apr 06, 2014 9:33 pm

Hi All,

I finally made it here. Glad that there still a place for us. Thank you to those who made this possible.
Any word on what happened to Simon? He's been on my mind and in my prayers. Hope he's okay.

I miss you guys and hope you're all doing great as well.

Adele

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Re: New/Old member

Post by Jasmine2 on Sun Apr 06, 2014 9:51 pm

Hi Adele, so good to have you with us again.  Yes, Nelly and Edwin are absolute superstars for what they have done for us! I also think about Simon a lot. I miss him and his kindness and wisdom so much, and he's in my prayers too.  I don't believe anyone has heard from him at all, but I hope and pray that all is well with him.

Jasmine x
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Re: New/Old member

Post by Jasmine2 on Sun Apr 06, 2014 10:01 pm

How are you by the way? Last we heard you were having a really tough time of things.  

J x
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Re: New/Old member

Post by Hadleigh on Sun Apr 06, 2014 10:33 pm

Welcome Adele

Sorry can't type much tonight as I'm having a bad off balance attack  Neutral seems a few of us suffer with it.

I hope you enjoy the new forum  cheers 

Nelly
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Re: New/Old member

Post by Adele2 on Mon Apr 07, 2014 1:31 am

Hi Jasmine...
Yeah, I'm still having a tough time. Pain is worse, much worse. On morphine now. Got diagnosed w/ osteoporosis after a bone density scan in the fall.
Had a consult with an ENT, last month, who saw my negative scans and my last blood test that came back normal, and he said he didn't believe my endo that I even have this disease...meaning, there's no way he'll operate. Also found out from him, that no one on this island does micro surgery since they don't have the equipment.
This ENT surgeon is only one of four on this island, and the rest wouldn't even consider a consult with me.
So, my endo says that once I get a blood test that equals the levels I had in the fall, he's not referring me to the surgeons on the mainland.

So, fingers crossed that my results come back tomorrow, and that my levels are as bad as before. It puzzled me that even my PTH level was normal last time. Weird.
Oh, and I've also been diagnosed as clinically depressed. Lovely.

Adele

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Re: New/Old member

Post by Adele2 on Mon Apr 07, 2014 1:32 am

Nelly,
Thank you for the warm welcome. I'm not sure what you mean by 'off balance', but I do hope it ends soon.
Best,
Adele

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Re: New/Old member

Post by Jasmine2 on Mon Apr 07, 2014 8:02 am

Oh no Adele! Stupid doctors and their stupid ideas ..... everyone knows (apart from them seemingly ...) that levels can fluctuate with PHPT!!! Sorry to hear you have depression now too but that's another indicator of PHPT - what is wrong with these medics???!!!!! Have you waved the information from Dr Norman's website under their noses, or would they be a bit precious about that and not like it very much? Keep on keeping on Adele, and let us know how you're going on.  When do you get your next results? Sorry if you've already said that - brain fog!  

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Re: New/Old member

Post by Little Audrey on Tue Apr 08, 2014 12:11 am

Very glad to have you join us here, Adele!    I am very sorry to hear you are doing so poorly.   This disease is so dreadful!    

Have you tried entering your levels into the normogram at the link listed here on the forum?    I don't know why doctors can't catch on to all of this!    I do think in time they will, but it is such a shame so many people have to suffer needlessly while the doctors learn!   I don't think too many doctors would have diagnosed me.   I know 3 of my doctors wouldn't.     I was a tough case.

Have you thought about contacting Dr. Norman for his opinion?     He was the one who finally diagnosed me.  

Don't give up!    Surely someone will diagnose you soon!

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Re: New/Old member

Post by Adele2 on Tue Apr 08, 2014 4:33 am

Thanks guys for your support.
Thing is, my endo is great...he agrees w/ Dr Norman...that someone can have even normal levels, yet still have an adenoma...or two.
I couldn't have asked for a better endo.
HOWEVER, he's not a surgeon, and he states that it's the SURGEONS who need to be up to date on the real facts of this disease. 
So, the onus is on having my blood work be as abnormal as possible, in order to convince them to operate.
Last month's blood test came back normal...and I got bad news today...my blood test last Friday, came back normal aswell. That's 2 normals in a row.
Now I must wait a month for yet another blood test, and pray to God it comes back abnormal.
I was so bummed today when I got the news. I cried for hours, because I know that all this, just prolongs the pain I feel. I just wanna hurl my walker and cane out the door...never to be used again. Along with my shower chair.
I can picture myself having those aids when I'm 90 something. But I'm only in my 50's. 
It's so wrong to make me wait. I have a diagnosis. I do have abnormal bloodwork done last fall. I have a bone density scan that says I've got upper / medium range bone loss. I've got severe depression, tinnutus, brain fog, IBS, no appetite, insomnia, joint pain and I'm a virtual shut in at my home.
What more do they want????
Are they gonna wait til I get rushed to the hospital with kidney stones and a stroke??
I can't believe this canadian medical system.
Sorry for ranting, I'm just at my wit's end with it all

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Re: New/Old member

Post by Jasmine2 on Tue Apr 08, 2014 8:26 am

Oh Adele, you sound like you're at the end of your tether with it all, I'm so sorry to hear you feeling so down, and believe me we are ALL right behind you, hoping and praying you can get a break and make some inroads into convincing the surgeons to help you. With not knowing how the health system works in Canada I'm not sure what I can offer in terms of advice but please know that we're here for you and you rant on, girl....it's good for the soul!  Do you have any kind of health authority or some such body who you can appeal to?  It's downright disgraceful that the people responsible for keeping you well could so dismissively disregard your suffering!

Jasmine x
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Re: New/Old member

Post by Amanda Lynne on Tue Apr 08, 2014 8:35 am

Hi Adele
I'm so sorry you are having such a bad time and anyone reading your posts would really see how awful this disease can make you feel.
I just posted about sparse eyebrows but that feels so trivial compared to how you are feeling right now.
I do hope you get some help with this from the medics there, like Jasmine says these people are getting paid to make people well not watch them go down hill, when it's something that can be sorted.
All my best wishes, as we say in Britain keep your chin up and let's hope some one in CANADA starts to listen to you.
Amanda Xxxx
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Re: New/Old member

Post by Meggy on Tue Apr 08, 2014 9:47 am

Hello Adele. I'm new on here so hope you don't mind me posting. I'm so sorry for what you're going through, seems so unfair. I hope it helps a little knowing that you've got so much support on here, even if we can't help in a practical way. Have you started an appeal or complaint - it might make them stop and think perhaps? Meggy xx

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Re: New/Old member

Post by Adele2 on Tue Apr 08, 2014 10:00 pm

Hi Meggy...nice to meet you. I hope you don't feel that you don't have a right to post because you're new. All of our opinions and voices matter. 
The more, the merrier I say. Not that I want more folks to have this horrid wretched disease, but the larger in numbers we are, perhaps one day we can collectively bring about a change in our respective countries health care systems, to sit up, take notice and take some bloomin' notes while they're at it.
After all, we're the ones who live with the symptoms, not them.But as it stands now, in my country at least, the most I can do is report malpractice, and that means a lot of time and even more money for lawyers, which I don't have. Docs pay hefty insurance for anyone who thinks of fighting back, they protect each other, and I'd lose my GP, my endo...no doc would want to touch me. If I rock the boat, I'll be stuck trying to tell my story to a doc in a walk-in clinic. There's no appeal process here and not enough docs to go around. I can't even shop for a new GP...none of them are taking on new patients.
I'd be looking at about a year to find another endo, and the one I wind up with, just may not diagnose me as mine has.
It's a 'suck it up buttercup' system here I'm afraid.
Thank you for chiming in though and it's nice to meet you Meggy. I truly hope you're doing okay.

Adele

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Re: New/Old member

Post by Meggy on Wed Apr 09, 2014 8:02 am

I have been lucky so far worth a quick diagnosis and referral but is very much a postcode lottery over here in the uk and it seems to be a country lottery too. You are right about people power - I wonder how many of us there actually are, I was diagnosed from a random health check and looking back I think I've had had this for years so there must be a lot of undiagnosed cases out there feeling low like I was because getting older was so miserable.

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Re: New/Old member

Post by Jasmine2 on Wed Apr 09, 2014 8:18 am

And it doesn't help matters being female Meggy, especially a female of a certain age as it gives the bloomin' doctors a perfect excuse to write it all off to the menopause.  It took me having a fit of the screaming ab dabs, sobbing and at the end of my tether in January last year (after many years of suffering ill health) in the doctors surgery to get him to think about it all again and finally do a blood test for calcium.  I think he probably only did it because there was nothing left to test for and he felt he had to do something just to get me out of the surgery, and it probably gave him a bit of a shock when it came back elevated, followed by an elevated PTH.  I would imagine he was doing handstands and cartwheels then because he could refer me on and I'd be someone else's problem!  He did openly admit that in his 27 years as a GP I was his first case of PHPT - whether that's because it's relatively rare, or because it's so under diagnosed or misdiagnosed, I don't know .....

Jasmine x
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Re: New/Old member

Post by Lucycatnaps on Wed Apr 09, 2014 10:00 am

Jasmine and Meggy,
     I could have written your post word for word,  If I had been 10 years older they would have whipped my womb out just like that, but instead nothing they offered ever worked. The last place I want to spend my time at is the GP surgery or hospital!  Just when I thought there was light at the end of a 10 year tunnel all this started last October and by January I just felt so awful and low, could not stop crying, felt in a perpetual flight/fight loop, could not relax and felt very frightened as I knew something was not right, the thirst was miserable.  My husband doesn't always understand either, he says if the GP thinks nothing is wrong then there isn't.  I only had bloods done Nov and was told they were fine.  I think my GP was desperate to get me out as well, gave me anti depressants which I never took as he said they may make me feel worse before better and redid all my bloods.  This time the calcium and PTH were high.  
Sue
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Re: New/Old member

Post by Adele2 on Sat Apr 12, 2014 7:12 am

Jasmine....you wanna hear something wild?
My endo said it's NOT rare. When I went to an US clinic for a scan, the doc who did it, asked me why I was there. I told him I was diagnosed with HPT and you know what he said?/ That he gets lots of peeps getting scanned for the same thing. Not only that, but his own mother had it. I asked him where she went for surgery, and he said she went to Vancouver. I asked if she went to St Paul's hospital. When he said yes, I knew right there that his mum probably saw the hot shot surgeons that I'm desperately hoping to get referred to.

These 2 surgeons are NOT ENT's. But like Dr Norman, they do these surgeries all the time, they are also on the cutting edge of research of this disease, write research papers on it and lecture all over.

THEN...I went to a local hospital for a DEXI scan, here on the island where I live. (It's an hour's drive to the ferry for me, another hour and a half on the ferry boat, and another hour's drive to St Paul's) But man, would it be worth it to get the best in Canada!!!
So I'm on the slab getting my bones radiated, and the doc who was doing it, asked me how long I've had PTH. I figure it's at least 4-5 years. I ask him if he thinks this is rare...
He tells me I'm his 3rd patient with HPT that day! Not only that, it was only 10:30 in the morning!!!!

It's NOT rare!! Like Dr Norman ranted...and rightly so...calling GP's and endo a bunch of monkeys!!
THEY ARE NOT DIAGNOSING IT!!!
That's the problem in a nutshell.
My GP now says that any time he gets a patient with kidney stones, he gets their calcium and PTH bloods done.
I think when they went to med school 20 yrs or whatever ago, they just work from the books they read back then. they don't keep on top of the new research papers coming out...I bet they're too busy shaking hands with drug reps and playing golf, when they should be reading all the editions of the Lancet or something valuable!

There....dun, dah, dun...done...

 affraid 

That's my excuse...and I'm stickin' to it!

Big Hugs all,

Adele

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Re: New/Old member

Post by Amanda Lynne on Sat Apr 12, 2014 7:45 am

Adele
I totally agree with those comments, there are some dedicated people in the medical profession but there are an awful lot who are not interested in keeping up with new research, or even researching something when a patient comes to them with something they are unsure of or haven't come across before. If we can find out all the information we have between online, why the hell can't they.
We all know the answer to this, it's the can't be a***d syndrome. At the end of the day they still get their huge pay packets and a good nights sleep.
Amanda xxxx
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Re: New/Old member

Post by Little Audrey on Sat Apr 12, 2014 11:38 am

Yes, this is EXACTLY why Dr. Norman called them monkeys and goats, and I can certainly understand his choice of words! As I posted earlier, my endo is certain all is well now with me because my serum calcium, PTH, and ionized calcium are all in the normal range. They were all in the normal range many, many times BEFORE my surgery! She wouldn't diagnose me because the ionized calcium never rose above the normal range, but she thinks all is well now because it is in the normal range?! I hope she is right this time, but she wasn't right the first time in assuming this. I would think she would have learned something from my case. It looks like she hasn't. So the next time another patient walks in her door with the same symptoms as me, having the same lab results as me, they will have to fight and struggle for 3 very long years to get their diagnosis too!! I am not calling her a monkey or a goat, but I certainly understand why Dr. Norman made his comment!

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