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New Member

Post by MaryM on Mon Jun 09, 2014 12:18 pm

Hi everyone, my name is Mary and I live in Glasgow, Scotland.

I was diagnosed with Primary Hyperparathyroidism in 2008 and this came about because I had just been diagnosed with Rheumatoid Disease and blood tests showed my calcium levels were raised so the Rhematology team arranged an appointment with Endocrinology.

Since 2008 my Calcium levels have been between 2.69 to 2.83 and I cannot remember the PTH levels but I know I was told they are 3 times higher than normal. All this time I have just been getting monitored.

2 years ago I got Sembasi scan and the doctor said it did show one of the Parathyroid glands but it  was very small so he said we will keep on with the monitoring. 

Last year things healthwise had been getting worse for me.

First I took a bad chest infection which I could not get rid of and was getting very breathless and coughing all the time.
Refered to the the hospital at the chest clinic and CT scans showed I had nodules on my lung along with inflamation and the lung function tests showed very poor results.

All this along with joint pain from the Rhuematoid Disease.

Rhuemology were not convinced all the pain was from the RD and they thought the Parathyroid was also to blame, also my blood pressure was raised and I was having problems with Heartburn.

Chest clinic scanned my chest and pelvis and it showed I had Kidney stones and Gallstones. Also thirsty all the time and constantly running to the toilet so they also thought the Parathyroid was causing problems.

So the next appointment at the Endo a few months ago was very different from any others I had and they seemed very concerned about the Parathyroid problems and I was told that they were going to speak to the surgeon about me and I would hear from them shortly.

On 6th May I saw the Surgeon and he said I should get the operation and that I would hear from him in 8 to 10 weeks. He know all about the other health issues but he said that he can still go ahead with the op.

I have an Endo appointment this Wednesday, not sure what for as it just came through the post.

Last Friday I received a letter to say that op will be on 26th June with a pre-assessment on the 19th June.

I am very worried about all this, but I know I need this done, only wish they had done it 2 years ago before I had all the other health issues.

Thanks for listening

Mary

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Re: New Member

Post by Lucycatnaps on Mon Jun 09, 2014 1:51 pm

Hello Mary,
First of all I just  want to say a great big welcome to you but also that I am sorry you are going through so much rough stuff at the moment.  This forum has been a great source of comfort and advice which has been invaluable, there are some very wise and knowledgable heads around here and have certainly made me feel that I am not alone on this epic journey.  I have not had surgery yet but there are a few here who I am sure will give you great information and advice on what to expect.  It sounds as if you have been suffering for a long time and I suspect that after the surgery you will start to feel heaps better.  I never would have believed how much this awful condition can affect our lives and at how long the medics are quite happy to just sit and watch and wait.  I can imagine how daunting it must all feel, but from what you say they seem to know where the little blighter is, which seems to be half the battle!  I am sure that other members with more experience than me will be along shortly to say Hi, they are a great and supportive friendly bunch and have picked me up a few times when I feel low.
Sue
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Re: New Member

Post by MaryM on Mon Jun 09, 2014 2:05 pm

Hi Sue

Thanks for the reply.
I do feel quite alone as I do not know anyone who suffers from this problem so coming on here will help a great deal.
I have always took what the docs say as true so when the Endo kept telling me that my symtoms were mild I just believed him.
I always put my symtoms down to RD as they have a lot of the same symtoms.
its only now when I am being told that having high calcium for so long can cause problems.

Thanks again
Mary

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Re: New Member

Post by Brigitte0 on Mon Jun 09, 2014 2:29 pm

Hi Mary and a Big welcome!

I also felt alone before I joined the forum and everybody was so welcoming, unbelievably helpful and friendly that it has been like having a wonderful set of friends who really do understand how you feel.

I'm sorry you're going through such a tough time with all this and I hope things will improve immensely for you when you have surgery. I really don't understand the Wait and See approach, but it seems to be very common in HPT, sadly: it's just a dreadful shame that your health has to suffer quite badly before anything gets done and it's even worse when you have another health problem.

I am awaiting referral on to the Surgeons at the moment, though I have had sestamibi and US scans which show there is a parathyroid tumour there, so I can't offer you much advice except to hang on in there!

I'm sure there will be others along to welcome you to the forum and offer you more advice. As Sue said, there are a wonderful bunch of people here, who cheer you up and help you along every stage of the way.

Take care.

Love Brigitte x
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Re: New Member

Post by lozza on Mon Jun 09, 2014 2:38 pm

Hi Mary, welcome to the forum,
I feel the same way, no ones else has this problem, you are in good hands with this forum, people understand and go out of there way to help.

I imagine , all of this has been a shock, monitoring for 2 years and now suddenly the operations. I am in early days with all of this and my endo wants to now monitor.
In a way, you need to look forward as you are nearly there and will feel so much better after the op. I think your endo needs to outline your care.

all the best

Lozza Very Happy

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Re: New Member

Post by Amanda Lynne on Mon Jun 09, 2014 2:45 pm

Hi Mary lovely to meet a new member.
I'm a second time rounder, had first op 24/4/13 they only checked one gland and took out 1.5cm parathyroid adenoma, I'd been having symptoms for around 6-8 years but no one looked into my calcium/pth levels until I requested it.
The surgery is fairly straight forward and I didn't have any pain afterwards so recovery was v quick. I am now back being checked for possible 2nd gland being faulty.
However I would suggest  when you see your surgeon that you ask, if at all possible for all four glands to be checked as I am not the only person on this forum who has had problems re more than one gland being affected, Audrey has had two adenomas out in one surgery.
Your Calcium is definitely high and if your pth levels are 3 times what they should be no wonder you are feeling very unwell.
Feel free to ask any questions you need, between us on this forum we can answer most things.
Good luck with all your appointments, when you see Endo ask for a copy of your blood results as we know on this forum that it pays to have everything in print.
Best wishes Amanda xxxx
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Re: New Member

Post by Little Audrey on Mon Jun 09, 2014 8:36 pm

Welcome, Mary!! So glad you joined us here!

My goodness, you've really been going through a rough time!! I am so very sorry. Hopefully, things will be looking up for you soon!

So happy your surgery is scheduled! Things are looking up already!  Smile 

I guess my first question would be, why the heck did your doctors make you wait 2 years after the tumor was revealed?! Oh, my gosh, that is awful! I can't imagine what their reasoning would be for that.

Keep your chin up; surgery is not far off now!!

Audrey

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Re: New Member

Post by Meggy on Mon Jun 09, 2014 9:03 pm

Hello Mary and welcome. There are so many knowledgeable people on here and I'm always amazed how people who are going through so much themselves will be there straight away with help and advice. Can't believe they made you wait 2 years, hopefully this will get you sorted out.

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Re: New Member

Post by Tigerlily on Tue Jun 10, 2014 4:06 am

Hello Mary

Welcome to the forum - glad you found us, but sorry you have to be here, if you see what I mean.

I'm also sorry that you were made to "wait and see" for so long and have developed other problems in the meantime, but, as Lozza says, it's best to look forward to the surgery now that you have a date and what sounds like a surgeon who is confident he can help you.

Keep us posted on progress when you are able, and look forward to a new life with lots of symptoms disappearing - you might be a totally new person after surgery!

Love from Tigerlily xx

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Re: New Member

Post by MaryM on Tue Jun 10, 2014 1:52 pm

Hi everyone

Thank you all so much, it just so nice to be able to speak to people who know exactly what I am going through.
My family are very supportive but have no idea on hard things are when I struggle so much.
I do still work but my duties had to be reduced a few years ago when I was diagnosed with Rheumatoid Disease but since then all these other things have crept up on me.
I just think my work colleagues must think or here she goes again with something else wrong with her and another doctor/hospital appointment.
The other big thing is people always comment that I don't look unwell but boy they are so wrong as everyone on here knows how bad you feel.
I have an appointment with the Endo tomorrow but not sure why so I will let all you lovely people know what it is all about.
No doubt I will have loads of questions.
Thanks again
Mary x

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Re: New Member

Post by MaryM on Tue Jun 10, 2014 2:01 pm

Oh I just remembered something, when I saw the doc after my scan 2 years ago when he told me that yes one of the Parathyroid glands had shown up, he said that it was only the size of a small pea so no need to do anything just now.
Recently I read that the Parathyroid gland is the size of a grain of rice, well if this is true then the difference between the two sizes is huge.
I am sure he must have got this wrong or what I read is wrong.

Mary x

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Re: New Member

Post by Jasmine2 on Tue Jun 10, 2014 2:47 pm

Hi Mary

Sorry I'm at the back of the queue to welcome you to our lovely forum but you might have seen from my other posts that my iPad has been going bonkers in the last couple of days and posting has been difficult. Anyway - welcome!  Sorry you've had a rough trip to this point, hopefully once you get your surgery you'll be feeling hunky dory!  Not fair that you had to suffer the 'wait and see' approach!  Grrrrr .... that makes me so cross!

Yep, we all know what you're going through, we've all read the book, seen the movie and got the T-shirt,..... I'm one of the 'lucky' ones, similar to Amanda, who is going through this for the third time now having had two previous parathyroid surgeries, my second having been in Tampa at Dr Norman's place, and still no cure in sight.  Deep sigh....such fun .......!

It's no joke when people tell you how well you're looking as they've no idea just how cr*p you're feeling and people just don't get it do they because they expect you to be looking as ill as you tell them you're feeling. I think I have looked ill on occasions, and people have commented on how tired I'm looking, and my thoughts are "oh your reckon? Bet you any money I'm feeling a lot tireder than I look" .......

Anyway, so glad you found us, just sorry you have to be here at all....good luck with the endo tomorrow, keep us posted and we're all here for you, willing you on.  Did you mention when your surgery is?  Sorry if you did, bleeping HPT ... memory's done a bunk!

Jasmine x
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Re: New Member

Post by Amanda Lynne on Tue Jun 10, 2014 3:16 pm

Hi Mary
Yes a parathyroid gland is normally the size of a grain of rice, so something the size of a pea attached to it is large and should have been dealt with ages ago.
My adenoma was 1.5 cms and the surgeon said that was a fair size (if only he'd checked the other 3 whilst he was there !!!!!)  Rolling Eyes 
I also get told by the doctors "but you look so well" what do they want us to do crawl through the door bleeding from every orifice before we are taken seriously.
Good luck with Endo appt.
Amanda xxxx
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Re: New Member

Post by Kathi209 on Wed Jun 11, 2014 1:58 am

Hi Mary
I welcomed you to the forum the other day but I don't think it posted. I don't see it. hum ....I'm glad you are finally getting surgery, your doc should have sent you to a surgeon 2 years ago when your scan showed the adenoma. Keep us posted . good luck with endo

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Re: New Member

Post by Tigerlily on Wed Jun 11, 2014 9:18 am

Hi Mary

Good luck with the endo today - make sure you ask all your questions and get some answers - not always easy, I know.

See you back here later - Love from Tigerlily xx cat  cat  (my cats, Tiger and Lily ..)

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