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Hi, i'm new, glad to have found you all

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Hi, i'm new, glad to have found you all

Post by bombersforever on Thu Apr 10, 2014 3:00 am

Hi there,

My Name is Marika I'm 39 and from Victoria Australia and have found out earlier this year i have HPT. 

I'm very glad to have found this forum Smile

An overview of my story, I had a bout of Gastro (stomach Flu, stomach bug) in november last year but took a while to get over it and a month after i was still feeling quite average, tired all the time, feeling Nauseated a lot, fuzzy head, poor concentration etc. So i made an appointment with my GP and she sent me for a round of blood tests to check on a few things and one of the blood tests was a calcium one (she nearly wasn't going to bother with that one (glad she did tho) results came back and i had a raised calcium level and PTH levels low vitamin D levels etc

So the GP wrote me a referral to see an Endo, in the meantime i had more blood tests and a neck ultrasound and got into see the Endo 8 weeks after GP referral (normal wait to see a specialist in Australia) on the first visit with the Endo he had all my blood results and scans and straight away said i'm going to suggest surgery. Since then ive had the bone scan more blood work the 24 hour urine collection test and the Nuclear scan.

The Bone scan showed very little bone reduction so far so i don't have osteoporosis at this stage (which im glad of as its been a problem for many of my other family members, Hereditary perhaps?)

The Nuclear scan unfortunately didn't show up the problem glad or glands either so ill have to have the more evasive "we have to hunt for them surgery" so now i am waiting to get in to see the surgeon (apparently hes very very good) in about 6-8 weeks time for the next phase of this journey.

I feel lucky that they have diagnosed this fairly quickly and i've quickly been sent onto the Endo and now to see a surgeon soon, as reading some of your stories about going in circles and jumping through hoops to get the healthcare you need for this.

I had gotten used to not feeling well, i've spent the last 20 years not feeling well as i had Glandular Fever when i was 19 battled with Depression, weight, anxiety very poor dental health (i had to get dentures at 33) and genuinely just not feeling right... so about 20 months ago i decided to lose some weight i lost 30 odd kilos or 66lb for the Americans or 4 odd stone for you lovely UK people and i was feeling the best i had in years but then late last year i started to feel like complete rubbish again......after looking at the symptoms list of which i have many besides those i listed earlier i am now wondering if ive had Hyperparathyroidism for years but just not realised?

thanks for listening and hugs to you all battling hard with this thing xo

PS... has anybody travelled on an overseas holiday with this? how did you go enjoying the holiday as best you could? i'm about to go to the US for a month with my husband on the honeymoon we never got to have when we were married 14 years ago.... im worried ill be a burden on hubbys enjoyment of the trip.... and he deserves this holiday.
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Re: Hi, i'm new, glad to have found you all

Post by Little Audrey on Thu Apr 10, 2014 3:46 am

Welcome to our forum, Marika!    I do believe you're the first Aussie to join us.  It looks like I get to reply first to your post, as I think everyone in the UK is sleeping now.   Smile    I am in the US.

I am so sorry to hear about all you've been through, especially at such a young age!    I'm happy you made it through it all ok!   Wow!

It is a shame you will have to have the more extensive surgery due to your adenoma or adenomas not making an appearance on the scan.  I only had 1 scan, and that was the morning of surgery.   It was negative, but Dr. Lopez in Tampa told me he knew there was at least 1 tumor in my neck because of all of my lab results.   I was very lucky, I guess, my scar is only 1-3/4" long.    I know a lot of people who have surgery in Tampa have smaller scars than mine, but I'm ok with it.    It is a shame everybody can't go to Tampa for their surgery.    I had a very positive experience there.

I had my surgery on November 14, 2013.  I'm still suffering from several symptoms, but actually yesterday and today have been fairly good days for me.    My pain has let up some for the time being, so I'm ok.  I know from experience that tomorrow could be a totally different story, so I try not to get too excited.

I know what you mean about getting used to feeling badly.   We were just discussing this the other day.   It is very hard to remember what feeling well actually feels like!   Hopefully, we will all get to experience an actual good day before long.

I'm very happy your bones are still in relatively good shape!   Thank goodness they caught this before that became a problem for you!      I was lucky with that too.   I never did have trouble with the osteoporosis.   I am 61 years old, so I'd say I was very lucky with that!   I did have a lot of bone pain in my forearms and my shins before surgery.  I still have some pain in my shins occasionally, but it's not as bad as before surgery.

I am very happy to hear you didn't have to wait too awfully long to get diagnosed, and you can now have the surgery and start the recovery process.    Some of us did have to fight quite a while for that, and some on here are still fighting!   I guess I was lucky that it only took me 3 years to get my diagnosis, but it seemed like eternity!    I guess it wouldn't be so bad if we all weren't suffering so badly, but that wait is hell when you're so sick!

Kudos on the weight loss!   That's wonderful!    You should be very proud of yourself!    I have struggled with my weight all my life.  I could stand to lose a few pounds.   I have lost about 10 pounds very slowly over the past few years, but I need to lose more.  I am working on that now.    I am hoping as I get to feeling better and can move around a little more, that will be a bit easier to accomplish.

So you're going to do a bit of traveling?    I guess I will get to welcome you to the US then too!   I live in Pennsylvania.   Where exactly will you be traveling?     I can't help you with your question.   I have never traveled overseas.   I would love to some day.   Maybe if I ever get well, I can plan that.   

Well, it's getting to be my bedtime now.     Again, welcome!   It is so nice to have you here with us!   As we always say, sorry you have to be here, but you found a place where you can feel free to gripe, cry, whine, and just let it all out, and we will all understand.    Everyone on here wants nothing more than to listen and help you through this.

Goodnight.

Audrey

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Re: Hi, i'm new, glad to have found you all

Post by bombersforever on Thu Apr 10, 2014 6:41 am

Hi Audrey,

thanks for the lovely warm welcome Smile im glad to hear your having a couple of good days, hopefully thats the start of mainly good days from hear on in for you!

Hubby and i are traveling to LA, Vegas, San Fran etc on our trip and then of to see South Dakota also Smile

I'm so glad to have found this forum, sometimes just finding a place where people understand what your going through is enough to make you feel a bit better.
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Re: Hi, i'm new, glad to have found you all

Post by Meggy on Thu Apr 10, 2014 7:01 am

Hello Marika, this Brit is awake at least - my own fault for drinking a cup of coffee straight before going to bed! I'm glad you've been diagnosed so relatively quickly, is not fair that some of the people on here have had -and are still having - so many problems getting their condition recognised.

I'm really impressed with the weight loss - I know I have to do something quickly as I am rather large for surgery, you'll have to be the diet guru on here:-) I always have an excuse for not starting a diet but I think this is a good one as we set of to France today for a holiday, first time we've been abroad for at least 10 years and I have been stupidly stressed out about it which I've decided is because I'm ill, *not* because I'm turning into an old stick in the mud which would be too depressing!

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Re: Hi, i'm new, glad to have found you all

Post by Sallyb on Thu Apr 10, 2014 8:28 am

Hi Marika - yes I would like to say HI and welcome you as I am a very new member in fact yesterday I joined but I am in England so I was on here very early yesterday morn.  Its lovely to have support from people who know how you feel - Good luck with everything- you are lucky they have found this early!!!!  I too had two scans and only one showed up the PTH but I know its there and am pretty sure they do as my consulting physician recommended me straight away to the surgeon.  I consider this lucky as the first appointment I had was in Oct last year but I was really lucky when they did two tests, one calcium high in blood and then because of it being slightly elevated did the Jones Benns urine test which more of less proved it.  Am seeing surgeon May 6th so am praying that he will agree to surgery - I will make sure he does as I am not going on like this and I think my symptoms are probably milder than some of the poor other people on here. 
Well done for the weight loss - I also need to lose a few pounds - am not that bad but was always a sportsperson and fit when younger but now I play bowls competively and this illness did not help me last year!!
Anyway maybe one day you will come to England but enjoy your hols and hope to talk to you soon
xx

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Re: Hi, i'm new, glad to have found you all

Post by lozza on Thu Apr 10, 2014 1:23 pm

Hi Marika,
Welcome to the forum, I am also a new member- just wanted to say hi, I went on holiday to Malta last year with PTH, the advice I would give is try not to worry. I made sure I had a few last days in between sigh seeing, make sure you drink lots of water and enjoy the break.

best wishes

Lozza

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Re: Hi, i'm new, glad to have found you all

Post by Amanda Lynne on Thu Apr 10, 2014 1:48 pm

Hi Lozza & Marika welcome to the forum, it's really nice to see new people, unfortunately it's because you are suffering from hpth. I'm sure you will find out lots on this forum and many people have a lot of knowledge about what you are going through, with this disease and dealing with appointments etc.
Amanda xxxx
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Re: Hi, i'm new, glad to have found you all

Post by shery on Thu Apr 10, 2014 6:57 pm

Hi Marika,-  Glad you are diagnosed now and you will have the surgery soon, but I disagree you are diagnosed quickly. you may had this disease for 20 years with the start of depression especially if you have no family history of depression. I suffered anxiety, depression 9 months before surgery,they are hell,I am still suffering postop. may be it needs longer time to resolve.You are a rock. How could you deal with depression all this years?

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Re: Hi, i'm new, glad to have found you all

Post by Linny on Thu Apr 10, 2014 8:07 pm

Hi Marika

Welcome to the forum but sorry you need to be here. It is good to hear you are going to get surgery soon and I hope it all goes well. I had a second surgery in January and am now ok. I travelled abroad a few times with Parathyroid disease and didn't have any problems. Stay hydrated and be careful of the sun as if your vitamin D levels go up it can(though not always) make you feel worse as it raises your calcium levels. This happened to me last summer and my calcium reached 2.91 which gave me palpitations. The up side was the higher vitamin D made my bone/ muscle pain better. You can't win with this disease!
I am travelling to California in summer and looking forward to that, hope you have a great trip. I'm in England by the way.
Best wishes
Lynn  Very Happy

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Re: Hi, i'm new, glad to have found you all

Post by Little Audrey on Thu Apr 10, 2014 8:21 pm

Everybody is going to California, and I'm in the US and never been there!   I'd better get my butt in gear and get out there!     Glad you're all getting the chance to visit.    Smile 

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Re: Hi, i'm new, glad to have found you all

Post by bombersforever on Fri Apr 11, 2014 3:25 am

Hi Meggy, Sallyb, lozza, Amanda, Shery, and Linny, thanks for the welcome Smile

I'm having a really nauseated and Heartburn day today yuck! I think i hate the nausea the most as i have a vomit phobia also thus im always stressed i'm going to actually throw up when i'm having bouts of nausea Sad  I have anti nausea medication to take when its really bad at least or ill take a ginger tablet or make a cup of tea and sometimes they help, do any of you lovely people have medication for any of the side affects? i also have some heartburn meds too and im also back on iron tablets as my last round of blood tests showed that my ferrite/iron levels were very low again (ive always battled with anemia tho as i have very very heavy menstruation cycles.

For those of you who asked about the weight loss i had all i did was use the"my fitness pal" ap and counted calories i was eating 1200 to start with on my weight loss journey and i tried to exercise at least for 30 minutes everyday for 22 days straight (as they say after 22 times doing something it becomes habit) so i did that and the weight started to come off...so that was the motivation to keep going.....It sounds pretty easy but now with the HPT i understand that most days you barely have the energy to do anything let alone exercise. I'm still trying to work out at least 3 times a week (an hour long brisk walk usually) but ive struggled to do that the last few months i must say just to many days of feeling crap so ill walk for 20 minutes or even 10-15 whatever i can manage. I'm hoping that after surgery and recovery i may have some better energy levels back to get back into working out. Hopefully you all feel like you can go out for a walk once or twice a week after you recover from this crap thing!

Thanks also for those who mentioned they travelled with HPT i'm less stressed about that now knowing there are some of you that have been able to travel Smile

Hubby and i were going to travel to the UK as part of our trip originally but we had to shorten it after my dad got ill, we don't want to be away for to long. But i really hope to see the UK one day Smile

those of you suffering with depression with this hang in there, Depression is a horrible horrible thing to cope with on its own let alone with HPT on top of it, i've been suffering on and off with depression for about 15 years i have no idea if maybe ive had undiagnosed HPT for that long but who knows.... when im at my very low times i just try and do something i love or enjoy even if i don't feel like doing it, i visit my niece (the little blonde cutie in my profile pic) she always cheers me up or i read or re-read a favorite book or watch a silly comedy movie or just sit quietly and pat one of my cats , i find even if it gives me a 5 minute break from wallowing in my depression it was worth the effort of breaking up the heavy sadness of depression.

once again so glad to have found this forum and all you wonderful people and i hope your not having to bad a day today xo
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Re: Hi, i'm new, glad to have found you all

Post by Sallyb on Fri Apr 11, 2014 7:53 am

Yes I am same as you regarding nausea - I don't do bugs etc I fight it every way I can and I had to have anti sickness tablets called buccal which I keep with me at all times!!!!  I also have a phobia of it which is horrendous - when my children were little I couldn't do anything and my husband had to sort them out!!!!  The nausea has eased though of late but I still take omprezol for the acid reflux which started the same time roughly as the pain under the rib thing so am thinking the PTHYroid started growing about then - does anyone know how long it takes it to grow to roughly 10ml by 5ml????
xx

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Re: Hi, i'm new, glad to have found you all

Post by Adele2 on Sat Apr 12, 2014 6:12 am

Welcome Marika.  Very Happy  My name's Adele and I live on the west coast of Canada. Just think California and look waaay up on the map...and there I am Smile

Like all the others, I'm so pleased to hear you've been diagnosed and have a gurney with your name on it, waiting for you soon.
Also I'm relieved that your surgeon is Very Very good as you say. I believe that's vital in order to have each gland looked at thoroughly and not have to undergo a second operation...and another nightmare of living with this horrid disease. 

I also think your depression should ease up post op, since your Vit D levels should go back to normal. It's our happy, feel good vitamin, essential for healing, reducing pain.
Many of us here have indigestion, IBS, acid reflux....things that aren't mentioned much in connection with PTH. But it's worth doing the research on this disease to ease your mind as to "Why"?
Calcium is digested in the gut. So if the Cal levels are kooky, wouldn't it stand to reason that our guts will be acting kooky too?

It's one of the things I love about us all sharing info, we learn more about this disease...together.
Not to mention that we have many caring shoulders to cry on when the going gets tuff.
So, welcome Marika.

Best,
Adele

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Re: Hi, i'm new, glad to have found you all

Post by Adele2 on Sat Apr 12, 2014 6:20 am

Ohh...to answer your question about how long it takes to grow an adenoma to a certain amount?
There is no answer to that. We do know, that there is NO correlation between the size of the tumour and our blood levels.
Some may have large tumours, little symptoms and may have had raised PTH and Cal for a short while...or vice versa. Who knows?
The problem is, that so few docs GET IT. They under diagnose this illness so often, that it would be difficult to tell if there's a time frame.
From what I've read on Dr Norman's site, he doesn't think time factors in to the size a tumour can get.
Me...I go by how long I've had the symptoms...depression, been diagnosed recently with osteoporosis (high end of the medium scale)...muscle weakness and cramps, bone pain, brain fog....
you know...all the lovely presents we receive from this bl**dy PTH disease.
You're in the right place for garnering knowledge and support.
I wish you all the best,

Adele

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Re: Hi, i'm new, glad to have found you all

Post by Lucycatnaps on Sat Apr 12, 2014 5:25 pm

Hi Marika,
I've had a busy couple of days and feeling pretty worn out today but wanted to say hello and welcome.  Wow , that is an impressive weight loss, it takes real determination and will power to do that and I know it isn't easy.  I do try but I could really do with losing several lbs , biscuits/cookies are my downfall.  I hope you do not have to wait too long for your surgery and that they find the little blighter easily.
Take care, Sue in UK
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