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Symptoms question

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Tigerlily
Adele2
mel123
Kathi209
Amanda Lynne
Linny
Little Audrey
Jasmine2
Hadleigh
Johnny1967
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Post by Johnny1967 Sun Mar 30, 2014 9:46 am

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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Post by Hadleigh Sun Mar 30, 2014 10:32 am

Welcome to the new forum John,

Your calcium, symptoms and kidney stone could well indicate PHPT, another calcium/pth test will give a better picture but sometimes it does take a while for the doctors to commit to a diagnosis, it's annoying but stick to your guns and don't let them leave you waiting to get worse.

Have you visited the old forum ? there is a lot of info in the old posts which you can still read until the 19th of April, unfortunately there has been no way for new members to join that forum for some time hence this new one. We are still learning how to do this so please bear with us ! some experienced members will be joining shortly so you will hopefully get some useful info and advice.

I will be away from the computer for some of today but do keep posting any questions and someone will get back to you.

Again welcome and thank you for joining our merry gang !

Nelly
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Post by Johnny1967 Sun Mar 30, 2014 10:36 am

I've had a good look at the old site and have worked out the story wrt access.

Well done to you and your husband for setting this up. It looks pretty good to me and am sure it will work out well.

J

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Post by Jasmine2 Sun Mar 30, 2014 8:41 pm

Hi John

Welcome to our new forum! Some of your symptoms may be indicative of PHPT but you would need to see what your PTH level is in conjunction with your calcium to get a better idea, and they should both be tested together from the same blood draw.

Keep in touch, let us know how things are going for you.

Jasmine x
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Post by Little Audrey Mon Mar 31, 2014 6:26 pm

Welcome, John! Great to meet you!

Jasmine is right on the money with her comment there, as usual. Just having high calcium OR high PTH will not get you diagnosed with HPT. I believe most surgeons will like at least 3 sets of lab results with repeated high or high/normal calcium and high or high normal PTH to make a diagnosis. My case was a bit tough. I had my levels tested about 20 times before I was diagnosed, but I probably could have been diagnosed a bit sooner had I contacted Dr. Norman sooner the second time. Good luck!

Audrey

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Post by Linny Tue Apr 01, 2014 7:29 am

Hi John
It's great to be on the new forum and be able to respond to new people seeking help. I had surgery in January and had all of your symptoms except Tinnitus. Although my ears were just blocked. The very first symptom to resolve was my shoulder pain, it had gone as soon as I woke up. This disease is weird.
Good luck and best wishes
Lynn  Smile 

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Post by Amanda Lynne Tue Apr 01, 2014 9:12 am

Hi John
Nice to meet you I agree with all that's been said you would need several calcium & PTH test to be able to be diagnosed and calcium would definitely need to be raised on several occasions. My PTH was only ever raised twice and stayed mid range for most of tests before my 1st surgery and is roughly the same now with either high or borderline high calcium. Good luck.
Hi Lynn how are you, if I recall you were going on holiday have you been, if so was it great ?
Amanda xxxx
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Post by Johnny1967 Tue Apr 01, 2014 1:06 pm

Thanks everyone for your replies and advice. I am having Ca/PTH tested tomorrow.

Best wishes, John

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Post by Jasmine2 Tue Apr 01, 2014 2:25 pm

Good, another step closer John! Let us know how you get on.

Jasmine x
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Post by Kathi209 Wed Apr 02, 2014 1:17 am

John I also had weight loss, now I have put 15 pounds back on  Sad Sad I still have some nausea issues but my appetite was so poor, but that has changed , seems like I am hungry all the time. If I'm going to be miserable I rather be skinny and miserable then fat and miserable. Let us know what your new labs are.

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Post by mel123 Wed Apr 02, 2014 10:24 am

Hi John

I initially lost a lot of weight but now seem to be hungry all of the time. Good luck with blood results.  Very Happy 

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Post by Johnny1967 Wed Apr 02, 2014 10:31 am

Hello Mel, I am new too.

Am off to do bloods later today.

Sorry to have to ask but what are your bowel symptoms? I started out v constipated and am now the other way. Constant gurgling and now night reflux. I used to have cast iron digestion. Never in my life did I think I would post that on the www.

Good luck to you. J

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Post by Jasmine2 Wed Apr 02, 2014 12:06 pm

Hi John

Gastric and abdominal discomfort (discomfort? That's putting it mildly .....!!!!) are very common symptoms and it's bl**dy miserable! I was told by my GP I had IBS all these years but it was only when I was getting diagnosed with PHPT that I realised it was down to that. I have swings between diarrhoea and constipation, and the most excruciating abdominal cramps that lasts for days, and I also get gastric reflux at night, so you're not alone and it's miserable what we all have to go through.  Yep, know what you mean about the weight thing and the nausea Mel and Kathi .... been there, had that.....

Keep on keeping on John and let us know how things are going for you.

Jasmine x
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Post by mel123 Wed Apr 02, 2014 12:20 pm

Hi John

My symptoms started in December and I have been passing blood and mucus every since. My bowel movements can be very loose, normal (ish) and borderline constipation. I have urgency to go to the toilet a lot and get there and don't all ways go. I had a colonoscopy which showed mild ulcerative colitis. I have been told its not connected to hyperparathyroidism but they both happened around the same time, whereas I have always been very healthy, so not sure.

I know what you mean about writing this kind of information but if it helps other people and increases your knowledge it can only be a good thing. Take care and keep in touch.



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Post by Little Audrey Thu Apr 03, 2014 5:50 am

John, I too had a LOT of intestinal issues before surgery. My intestines gurgled and churned constantly. I had parathyroid surgery 4-1/2 months ago. My intestines calmed down greatly immediately after surgery! No more constant churning and gurgling. It is so nice! I was also diagnosed with IBS probably 30 years ago.

Audrey

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Post by Little Audrey Thu Apr 03, 2014 5:51 am

Well, I think I see another newbie on here. Welcome, Mel!! Glad to have you aboard!

Audrey

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Post by Adele2 Mon Apr 07, 2014 1:44 am

Hi John,

Best of luck tomorrow with the blood work. I'm in Canada, so the levels are different here and measured  differently. I have to do some odd math to calculate.
With the brain fog I get...that's a chore Smile
But if you do have this awful disease, then tinnitus is on the list of symptoms. I know it well. It's only increased in frequency and duration for me.
I hear you on the digestive troubles as well. I think we had a lengthy thread just for that on the other forum.
And pain...well, yuppers, folks have pain, in all places, especially near the major bones unfortunately. Along with muscle cramps, twitching and spasms.
I think because taken separately, these symptoms may seem uneventful at first...yet when you add them all up as they worsen, it can get quite overwhelming.
But you're in the right place for advice and support if you have HPT.

Adele

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Post by Tigerlily Mon Apr 07, 2014 12:20 pm

Hi John and welcome to the forum.

I've been having the left-side pain under the ribs and down the flank for about 18 months now, first just mildly but now somewhat worse. It's an odd pain to have so I picked up on it in your symptoms straight away.

Do let me know what ideas for it the medics come up with, and I'll let you know what mine say! Perhaps that way we might interpret it somehow. If you google "left side pain under ribs like hunger" you might come across a whole forum about it with various diagnoses. If nothing else, it's good to know you are not alone.

And you are not alone here on this forum either, so do keep in touch and let us know the results of the Ca/PTH test you are having today.

Best of Wishes, Tigerlily.

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Post by Rosie11011 Mon Apr 07, 2014 8:02 pm

Well that's very strange - I've suffered with left sided pain under the ribs for over twelve months. I googled it many times but could never really find the answer to what could be causing it,  but it's hugely better since my parathyroid surgery.  That was four months ago, so I'm really hoping it will soon be resolved altogether.  I'm sure there has been some connection with my previously high calcium.
Best wishes, Rosie

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Post by Admin Mon Apr 07, 2014 8:22 pm

Adele2 wrote:Hi John,

Best of luck tomorrow with the blood work. I'm in Canada, so the levels are different here and measured  differently. I have to do some odd math to calculate.
With the brain fog I get...that's a chore Smile

Adele

For your info, there is a conversion guide on the forum here: https://hyperparathyroid.forumotion.co.uk/t18-conversion-of-pth-blood-calcium-from-us-units-to-si-units
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Post by Adele2 Mon Apr 07, 2014 11:00 pm

Thanks admin. The chart will make my life a whole lot easier on here.
It was a source of mass confusion on the other forum since the calculations are different from my country to the states and the UK is yet another difference.
I'm already confused by the simpliest of things these days. Thanks for the chart it'll help greatly for me to understand what others are saying when they cite numbers.

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Post by Admin Mon Apr 07, 2014 11:05 pm

Hi Adele

It you ever find-out the conversions from Canada to/from the US and UK, I will add it to the existing list.

Edwin
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Post by Sallyb Wed Apr 09, 2014 8:35 am

I must be lucky as I have only had two sets of blood and the urine test and immediately was diagnosed - blood in Oct and Urine Nov - saw surgeon Jan and he told me I had the illness and recommended surgery immediately (well its gonna be at least 5 months by time I get it) but it doesn't seem as bad as a lot of people on here.  I don't think I could bear it for much longer - I just feel rubbish and miserable all the time and thats not me!!!!

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Post by Sallyb Wed Apr 09, 2014 8:38 am

I also meant to say that I started the pain under my right rib about 3 years ago and that was why I eventually ended up in hospital for them to find cause and from that this is where its ended up as they couldn't find anything wrong with stomach etc from this pain - very odd?  Does anyone know whether the symptoms go away for a time as this seems to have calmed down and also I had a lot of nausea a year ago and was on tablets and that seems to have calmed down thank God!!  Although I still get odd bouts now and again - maybe its when the parathyroid grows?????

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Post by Amanda Lynne Wed Apr 09, 2014 9:46 am

Hi Sally yes symptoms do come and go, but eventually the days of feeling better get few and far between.
Did they check for gallstones as I and a few others have had these and there maybe a connection. This can give you pain under right rib and centre of stomach plus nausea.
Amanda xxxx
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