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Hello eveyone. currently waiting too meet a surgeon

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Hello eveyone. currently waiting too meet a surgeon

Post by rach260190 on Sat Sep 27, 2014 12:01 pm

Hi there
My name is Rachel and I am so glad to have found this site!
I have an underactive thyroid and primary hyperparathyroidism.
I am going for my parathyroid scans next month and meeting a surgeon on the 21st. I am struggling with my symptoms and it's taking its toll on my life in every aspect.
I'm praying I will have surgery not too far dowe the line
Thankyou
Xx

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Re: Hello eveyone. currently waiting too meet a surgeon

Post by Hadleigh on Sat Sep 27, 2014 2:19 pm

Hi again Rachel

Just saying an official hello on the forum, welcome to this sometimes crazy and often hilarious group of pth warriors.

The others are obviously out and about enjoying themselves  Rolling Eyes   Brigitte on the other hand is hopefully recovering from having had her surgery this morning so probably not enjoying herself to much right now Neutral

Bit quiet right now but have no fear the others are around somewhere Suspect

Nelly
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Re: Hello eveyone. currently waiting too meet a surgeon

Post by Lucycatnaps on Sat Sep 27, 2014 2:58 pm

Hi Rachel and welcome,
Just wanted to say hello and sorry that you are going through all the symptoms that this conditon brings.  It sounds taht things are moving slowly forward for you and I hope they do not keep you waiting too long.  I'm hypothyroid too and still struggling to get a definite diagnosis.  I have been having raised calciums since 2006 but no-one told me until January this year when I started  feeling more ill and they checked my PTH level and it was also found to be raised.  I am under the endocrine dept and they are just monitoring at the moment but I am hoping for a referral to a surgeon.  This group have been amazingly supportive and helpful when Ihave had some very low days.  Whereabouts are you in UK?
Sue in Lincs
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Re: Hello eveyone. currently waiting too meet a surgeon

Post by rach260190 on Sat Sep 27, 2014 4:03 pm

Hi sue great to hear from you. I'm sorry your suffering too!
Being hypothyroid too is a right pain! I think the symptoms cross over and it's hard to differentiate between the two.
I hope you can get a refferal to a surgeon I don't know why they hang about, things wong get better by just monitoring them.I think this disease slowly takes is toll on many organs in the body and puts it under great strain. What's keeping them from reffering you ? Sad
I am worried when I meet the surgeon he will think my symptoms are from my thyroid problems alone. All sorts of things run through my head. Sometimes I think I am loosing the plot!
I live in bristol and am under the care of an endo at southmead hospital xxx

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Re: Hello eveyone. currently waiting too meet a surgeon

Post by Jasmine2 on Sat Sep 27, 2014 8:05 pm

Hat trick! I'm hypothyroid with primary hyperparathyroidism too! Sorry you have to be here but so glad you found us. The love and support you will receive on here from people who understand, know how hard it all is and know exactly what you're going through will be invaluable and sometimes, for me, on bad days, it's the difference between sinking or getting up and carrying on.

Need to put my feet up and veg out in front of the TV now and let Mr Jasmine wait on me (I wish...) ...... travelled to Oxfordshire for a dog show with my two lovely girlies today - feeling pooped What a Face

Jasmine x

PS I think Nelly sees a surgeon in Bristol, if I'm not mistaken ......?
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Re: Hello eveyone. currently waiting too meet a surgeon

Post by Hadleigh on Sat Sep 27, 2014 8:13 pm

Yep we both have the same surgeon Jasmine, hopefully after Thurs I can confirm that he is indeed a very nice man cheers

Nelly x
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Re: Hello eveyone. currently waiting too meet a surgeon

Post by rach260190 on Sat Sep 27, 2014 8:25 pm

Hey jasmine,  great to hear from you Smile a double whammy hey !! Thyroid and parathyroid.  It seems common the 2 different problems co incide. I'm so happy to hear from everyone it makes me feel less bonkers. As with everyone else this disease has put alot of strain on my whole life. Today I had a little moment, I went and sat on the floor in a corner in the dark and had a good cry for 10 mins..... sounds bizzare but made me feel a little better. Every day is symptomatic but it's probably my parathyroid and thyroid problems crossing over. I'm hoping and praying that the surgeon will operate and I meet the criteria. iIf not we'll I dread to think! ...... glad you have had an enjoyable day jasmine, its the good days that make up for it.
and thanks nelly.... i cannot wait for thursday for you. Could i also ask whay you make of my calcium and other test results.
much appreciated rachel xxx

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Re: Hello eveyone. currently waiting too meet a surgeon

Post by Admin on Sat Sep 27, 2014 9:41 pm

Hello Rachel

Welcome to our forum :-)

I am sure that you will he happy with the positive and friendly advice here.

Edwin (Mr Admin)
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Re: Hello eveyone. currently waiting too meet a surgeon

Post by Kathi209 on Sun Sep 28, 2014 2:58 am

Hi Rachel

Welcome to the forum. I have hyper P but not hypoT. Hyperparathyroid is bad enough really couldn't deal with two diseases as the same time. Sorry that you are. Do you know what surgeon you'll be seeing? Keep us posted. Best wishes to you.

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Re: Hello eveyone. currently waiting too meet a surgeon

Post by rach260190 on Sun Sep 28, 2014 8:12 am

Hi kathi209 (sorry I don't know your name) my appologies. I am meeting Mr justin morgan on the 21st of october and I'm praying he will operate. Yes like you said two diseases at the same time! However I feel it's the parathyroid problem thays really knocking me down. I look back about 2 years ago and no one would even recognise me. I was happy outgoing and looked more healthy. Now I'm a recluse with no social life and all the usual symptoms. Thank goodness for the website. Can I ask how far you are along in your journey.
Rachel xxx

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Re: Hello eveyone. currently waiting too meet a surgeon

Post by Hadleigh on Sun Sep 28, 2014 8:22 am

Morning Rachel

You may already have seen it but if not Justin Morgan's profile and picture are on the Spire Bristol website, I'm not sure the pic is very accurate but gives you an idea of the face behind the name.

Nelly
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Re: Hello eveyone. currently waiting too meet a surgeon

Post by rach260190 on Sun Sep 28, 2014 8:35 am

Morning nelly Smile no such thing as a lie on a Sunday or any day! My sleep is terrible and trips too the loo!!
Anyway.... you read my mind I did that the other day and found his picture. Strange putting a face to a name and reading about someone before meeting them! I noticed on another post you said he operates once a week I'm guessing this is a Thursday? I am seeing him on a Tuesday in a joint clinic but I'm not sure who with and my endo is in another clinic. I'm a little nervous about this! I have so many questions. .. and confusions, it's always ticking over in my mind. Can I ask also how long after you first met Mr Morgan did you have a pre op and we're offered a date?

Kind regards Rachel xxxx

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Re: Hello eveyone. currently waiting too meet a surgeon

Post by Hadleigh on Sun Sep 28, 2014 9:11 am

We are always up and about early, lots of animals shouting for breakfast !

I first saw him at the old Southmead in March, had scans in May and PreOp in June in the new building. He did say my op would be 3-4 months from going on the list in March but because oh the hospital change over it was delayed plus i had to postpone my scan appts.

I didn't have a surgery date when i had my pre op appt which seemed a bit strange and i did have to call surgery appts in August when i still hadn't got a date, they said he only ops on a Thursday and i got a date for Sept but it was then changed to this coming Thurs. 

So it has been 7 months from the start but i may just have been unlucky.

I saw him in the general surgery clinic as my Endo is at Spire. Take a list of questions with you so you don't forget anything and you will have the advantage of him already having your scan results so he can come up with a plan there and then, well hopefully anyway. I would imagine if you go on to the list after that appt you won't have to wait to long.

I know its hard but try not to worry about seeing him, he really is a very nice man.

Ok i must go and let the chickens out before they break the hen house door down affraid

Nelly
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Re: Hello eveyone. currently waiting too meet a surgeon

Post by rach260190 on Sun Sep 28, 2014 9:41 am

Oh how lovely! Animals really do cheer me up!
Thankyou for all the information it's really useful. I'm sure the changes from old hospital to new caused a bit of a delay I also heard the had problems with switching over computer systems ect.... what a nightmare is such a huge place!
From what I have read I feel very lucky to be going to see him. Others have suffered such a long road to diagnosis. I have had a bit of a struggle.... because of my age I'm sure they were hesitant to diagnose.
Like you said when I see him I will make sure I have written things down. I have also prepared a letter just in case I miss anything out as my memory is terrible. I'm hoping that I will get enough time with him in the appointment as my endo appointments always seem so quick and I end up panicking and rushing.

I bet it's lovely in somerset this morning it's so beautiful! My parents live on the edge of dartmoor. ... The countryside reallt cheers me up.
Xxxx

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Re: Hello eveyone. currently waiting too meet a surgeon

Post by Little Audrey on Sun Sep 28, 2014 12:56 pm

Welcome, Rachel!! Sorry I'm so late with this greeting. I usually do bring up the rear when something is posted because of the time difference between our 2 countries. I'm in the US. This time I'm REALLY late because I just didn't get a chance to get on the computer all day yesterday.

So very glad to have you with us! I don't know what I would have done had I not found these wonderful people a year and a half ago when I was struggling trying to get diagnosed with hHPT. They have gotten me through some VERY rough times! I hope we can all help you get through it all now.

I too am hypothyroid. I also suffer from adrenal insufficiency. I just started treatment for the adrenal issue a few weeks ago.

I had my parathyroid surgery 10-1/2 months ago. I had 2 parathyroid tumors and a thyroid nodule removed at that time. Recovery has been rough for me, but I am now thinking that might be because I was dealing with more than the hyperparathyroidism. I have so many issues going on, I am not sure which problem is causing which symptoms. All I know is that I'd really like them all to resolve!

I am very happy to hear that things are moving along for you, and you are on your way to being well again!! I'm looking forward to traveling with you throughout the rest of your journey.

Again, welcome!!

Audrey

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Re: Hello eveyone. currently waiting too meet a surgeon

Post by rach260190 on Sun Sep 28, 2014 3:15 pm

Hi Audrey!  

I'm sorry you have been through such a rough ride. Having two issues is unfortunate and 3 even worse. Having hyperparathyroidism on its own is nasty enough. I really do feel for you. 

I also feel some of the symptoms cross over. This is another issue thays worrying me when I meet the surgeon, he will justthink my symptoms are to do with my thyroid and they will justmmonitor my thyroxine instead of operate. I just want to be rid of this disease. It reduces me too tears most days with frustration and the usual symptoms. The weakness, bone pain, constant trips to the loo, dry mouth, snapping hair, lackof energy ,  dry skin,  brain fog, palpitations, memory loss, confusion.  All the usual!!! Like everyone else it'shad a mmassive impact of my relationships and social life. I do absolutely nothing in fact some days after work, which I only do part time and just about manage, I sit with the curtains closed and close my eyes. I can't concentrate long enough to read a book or watch a film. I feel like a hollow shell and empty.
I have struggled with a diagnosis but not as long as  others have. It's such a shame and it's very cruel that Dr's don't know enough about this! 

Rachel xxx

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Re: Hello eveyone. currently waiting too meet a surgeon

Post by Little Audrey on Wed Oct 01, 2014 1:11 am

I understand perfectly, Rachel. For the 3 years I was trying to get diagnosed with pHPT, I recall waking up every morning wondering why God was letting this happen to me. I prayed to him, asking if there was no chance of me ever being well, to please just take me now, because I could not live one more day the way I was. I would wake up in such a deep, dark depression, my chest would burn; and I don't mean form acid reflux. I just didn't want to go on. My husband didn't want to hear anything at all I had to say pertaining to the disease. He would get angry if I tried saying anything to him about anything I was going through. I don't know what I would have done without the rest of my family to lean on. They got me through it. The wonderful people on this forum also helped me a great deal!! I really don't think I would have made it without the love and support of some very special people.

Even though I am still struggling with some health issues, that deep, dark depression lifted after my parathyroid surgery. Even though I still wake every morning with terrible neck pain, upper arm pain, back pain, heel and foot pain, etc., I no longer feel depressed. I might get ticked off from time to time because my stupid body just can't seem to get its act together, but I am not depressed.

Yes, doctors like to blame hyperparathyroid symptoms on a lot of things. I was told my symptoms were from fibromyalgia, menopause, etc. I remember asking my doctors which of those they thought was causing my bone pain!! Of course, they had no answer. Eventually, they all learned what was really causing my symptoms! Well, at least some of them. I'm still dealing with some. I'm hoping they will all resolve when the adrenal issue is taken care of. If not, I will continue researching until I figure out just what is causing them all!

Don't let your doctors discourage you! March on and prove them all wrong!

Audrey

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Re: Hello eveyone. currently waiting too meet a surgeon

Post by Brigitte0 on Thu Oct 02, 2014 3:01 pm

I'm sorry I missed out on your Welcome to the forum Rachel, but I've been a bit caught up with complications etc as a result of my parathyroidectomy last Saturday as you might have gathered.

I'm also sorry to learn what you're going through, but pleased that you've found the forum so you can keep in touch with people who understand and can offer help and advice to lift your spirits and help you in any way they can. I would have been lost without everyone here.

Sending you cyberhugs to keep you going! (I'm good at hugs  Smile !)

Brigitte
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Re: Hello eveyone. currently waiting too meet a surgeon

Post by rach260190 on Thu Oct 02, 2014 3:45 pm

Hi brigitta, I've been keeping up with you journey and I'm hoping your doing okay. I can't wait to hear how your recovery goes and the progress you make. I'm hoping you will loose someone of those miserable stmptoms! This forum has been amazinf and eveyones comments have been so helpful!

I received my bone density scan today and was goigoing to ask everyone about theirs. I'm 23 and have been told I have osteopenia. I'm pretty gutted but it comes and no shock and just confirms this disease. I'm hoping this will aid me in going for surgery. I'm also wondering how long I've had this damn disease for.

Anyway positive thoughts for you and many hugs. ... i hope this is over for you now and your on the road to recovery. ...
Love rachel xxx

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Re: Hello eveyone. currently waiting too meet a surgeon

Post by Brigitte0 on Thu Oct 02, 2014 4:12 pm

Thank you Rachel. I'm sure everyone will help you with your bone scan questions over on the other thread where everyone gathers Smile If you have the actual T scores from the results, post them as well. I think a lot of us have osteopenia as it's a symptom of pHPT though it can be corrected once calcium levels return to normal following surgery. I know there's the big surgery doubt going on, but it sounds quite hopeful for you if you are actually meeting a surgeon later this month. Hopefully the osteopenia might be a clincher for surgery for you; there's no harm in living in hope!

Love and hugs

Brigitte xx
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