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Symptoms question

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Symptoms question

Post by Johnny1967 on Sun Mar 30, 2014 9:46 am

First topic message reminder :

Many thanks for setting up this forum!
I recently had a kidney stone and when calcium was measured in a and e it was slightly elevated at 10.4. I need to get a concurrent ca/pth done to follow up.

In the meantime I have some ongoing symptoms and wondered if they sounded like Primary HPT to anyone else.

Tinnitus
Pain between shoulder blades
Mild pain on left side under lower ribs and lower down in flank this is there all the time (def not stone pain)
Horrible gurgling digestion with low appetite (also all the time)
Initial weight loss followed by crazy weight gain
Weird stools
Dark concentrated urine (all the time)

Any comments gratefully received.

Best, John





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Re: Symptoms question

Post by Sallyb on Wed Apr 09, 2014 9:50 am

Yes they did and no gall stones thankfully
Is there anything on this site which gives all the many symptoms do you know??

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Re: Symptoms question

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

I had an abdominal U/S a month ago which shows I have one large gallstone, it was not there six years ago on CT.  It is not giving me any problems and my Gp says one big is better than lots of small ones, at least no right sided under rib pain.  I do get a strange deep dragging ache at times under my left shoulder blade on and off.
Sue
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Re: Symptoms question

Post by Jasmine2 on Wed Apr 09, 2014 10:26 am

@Sallyb wrote:Is there anything on this site which gives all the many symptoms do you know??
If you have a look in the reference section Sally, I believe there is.

J
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Re: Symptoms question

Post by Sallyb on Wed Apr 09, 2014 10:44 am

thanks - I found it and watched the video which was really interesting and I have at least 85 - 90 % symptoms!!!!!!  Can't wait to get rid of this!!
By the by I posted a message on the introduce myself forum and had lots of people reading it - I asked questions within this message and have had no replies which seems strange as most people are very good at answering even if its to say hi - Have I done something incorrect do you think???

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Re: Symptoms question

Post by Little Audrey on Wed Apr 09, 2014 11:01 am

Hi Sally, I just got on here for the morning.  I will check to see your welcome message right now.   If nobody answered your questions, I am sure it's because they have not read your message.  Everyone on here is  usually very prompt in replying to everything.   So glad you joined us!

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Re: Symptoms question

Post by Sallyb on Wed Apr 09, 2014 11:14 am

Thanks Audrey - probably being a bit overanxious - am so pleased have found people who understand what am going through - as I said in my Hello message what people can't see they don't understand and just think you are a hypercondriac!!!!!  I am sure my other problems are related!
Are you waiting for surgery or ????

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Re: Symptoms question

Post by Little Audrey on Wed Apr 09, 2014 11:24 am

Yes, you are right, Sally, I'm sure many people thought I was losing my mind when I kept complaining of so many weird symptoms!    I think they were all very surprised when I was finally diagnosed.   

I had parathyroid surgery on November 14th, after suffering terribly with MANY symptoms for 3 years.   I diagnosed myself as soon as I saw that that my PTH was high, but since my calcium was not out of the normal range at that time, the doctors wouldn't diagnose me.   I fought with them for 3 very long, painful, miserable, frustrating years, until Dr. Norman finally diagnosed me.   I finally had 2 tumors removed.     I am still suffering from many of the symptoms.    It seems my muscles and tendons have been affected worse than anything, if, in fact, it is the HPT causing this problem.    I am also suspecting my thyroid.   I just increased my thyroid meds yesterday to see if that will help.     It has been a very long road for me.    I mentioned on the old forum that they should rename this disease.    I think they should simply call it Hell!!    I think a lot of people would agree.

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Re: Symptoms question

Post by Sallyb on Wed Apr 09, 2014 11:32 am

OMG thats sounds awful!  And yes you are right they should call it HELL!!  I have to say you sound as if your symptoms are much worse than mine although a few times when I had to have 3 times off last year at a week a time from work when i thought I had flu and just lay around lathargic and sooooo tired - just didn't care and couldn't do anything!!!
Just wish the doctors would realise how bad it can be
Have read some messages from the Paraythyroid.com website and it seems most people have a reduction in symptoms almost immediately - you seem to be an unlucky one!!  I assume you are in America????

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Re: Symptoms question

Post by Little Audrey on Wed Apr 09, 2014 11:55 am

Yes, I am in the US, Sally.  

A few of my symptoms have resolved, some have improved, but most of the painful ones remain.   They actually got worse after surgery, which is why I'm suspecting another cause at this point.   Dr. Norman and his nurse have both reminded me that it can take up to 6 months to fully recover.  It was mentioned on the forum recently that some people have not felt significant improvement until a year post-op.    I keep praying.  

My hair stopped falling out about a month after surgery, but it looks like a LOT of new hair started growing back in immediately, if that makes any sense.   My IBS symptoms GREATLY improved the day of surgery.    The condition was gone for months.   A couple of weeks ago I started having some problems again.  I'm hoping it will disappear again soon.    I had some very strange sinus issues for a couple of years, which kept worsening until surgery.  That is now gone also.   My ENT said she wouldn't be surprised if it was the HPT causing the problem.  Looks like she was right.    My head still hurts to some degree almost ever day, even though it stopped completely for a month, a couple of months after surgery.    My shins still ache some days.   My upper arms, thighs, and fingers of my left hand are all very stiff and sore.    I still have trouble with an extremely dry left eye some mornings.  It feels like the lid is stuck to the eyeball, and I can't open it for about 15 or 20 minutes.  Although, when it happens now, it's not quite as severe.    My neck has been cramped rock-hard now for 3-1/2 straight years and is very stiff.   This is 1 of the worst symptoms I've dealt with.  It is VERY painful.   My shoulders and entire back still cramp up a lot. When they flare up and cramp solid, it will last for a month or 2 before it will let up.    I've had awful plantar fasciitis, along with severe burning pain in the big joints of both little toes, and because of cramped muscles and inflamed tendons, it feels like I'm walking on golf balls.    This too is somewhat better than it was before surgery.   I no longer need crutches to walk, but I still limp a little.  Standing still is the most painful.  I still can't stand for more than a minute or 2 without needing to find a chair.  Yes, it has truly been hell!     Before surgery I also had a lot of knee and hip pain when trying to sleep.   I also had a lot of arthritic-type pain in my wrists, but thank goodness that is all gone now.

I am so happy you do not have a lot of symptoms!    I am also very glad you have been diagnosed before the symptoms had a chance to get really bad!     I know even if you don't have a lot of symptoms, you're still suffering terribly!    That's just how this disease is.    It stinks! 

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Re: Symptoms question

Post by Sallyb on Wed Apr 09, 2014 12:10 pm

I feel so terrible thinking I feel bad when you are going through all that - I think I would have given up by now - I moan enough as it is
I just hope someone will help you soon - I do have a lot of symptoms but they are so mild compared to yours thank god but sometimes they feel bad - 'when I get them again will try and think of you and hope it makes me feel better
x

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Re: Symptoms question

Post by Little Audrey on Wed Apr 09, 2014 1:17 pm

That is very sweet of you, Sally.   I'm sure you have your own burden to bear with this stupid disease.  Hopefully, some day we an all be well again and feel good!    I pray for us all.

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Re: Symptoms question

Post by Adele2 on Sat Apr 12, 2014 7:40 am

Hi John,
Nice to meet you. Have you gotten the results of your blood test yet?
Curious to know how that turns out. Although, as you may know, levels fluctuate, and you'll need to pressure your doc into giving you several blood tests.

From the sounds of it, you have some classic HPT symptoms.
I hear ya on the intestinal gurgling...and the tinnitus...wowsers!
I used to just get it in small doses, and spread wide apart in time. This past 6 months or so, the tinnutus will last longer and longer. Some days it goes for an hour or so. 
My doc says the only cure for that...well, other than getting the little bugger cut out of my neck....is listen to music.
I've done that...put the radio on or a CD. And yet, the tinnitus continues through every song....

Welcome to the Wonderful, Wacky World of HPT!!!! affraid 

Let us know how you're getting on okay?
Best,

Adele

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Re: Symptoms question

Post by Tigerlily on Sat Apr 12, 2014 5:46 pm

Hi Adele

Sorry to hear about the tinnitus - it can be a real pain - but I found some relief from a website called www.hushtinnitus.com.

Have a look and see what you think.

I'm going to post the link in a new topic so everyone can access it.

Love, Tigerlily.

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