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Good and Bad Days... Doubts

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Kathi209
mel123
Amanda Lynne
Lucie83
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Post by Lucie83 Thu May 29, 2014 11:58 am

Hi All,
I just wanted to run a question by you all. I haven't been diagnosed with HPTH but currently undergoing tests and waiting on blood and 48hr urine collection results. I see a private Endo last week and he wasn't ruling out HPTH from a previous set of blood results in Jan but wants to start from scratch, annoying but that's more progress than I've ever had.
I haven't been feeling well for roughly 16 months or more, fatigue, headaches, brain fog, palpitations, abnormal LFT tests, bone pain in fingers, tummy troubles, thinning hair around front of scalp and more I cannot even think of at the moment. I'm 30 years old.
I just wondered if anybody who suffers with HPTH has good and bad days? I don't feel great all the time but some days I think to myself "I don't feel too bad today" the better of bad days you could say. I then doubt myself on those better days that maybe the doctors are right and I'm "remarkably healthy" as they keep assuring me, and I then doubt myself.
Does anyone have days/thoughts like that?

Lucie xx

Lucie83

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Post by Amanda Lynne Thu May 29, 2014 12:12 pm

Lucie
I'm a second time arounder and I can say ATM all my days are not too good but I have had many times when I think my symptoms have subsided and I get doubts creeping in. I had a session like that in the weeks before my first op but I had a 1.5cm adenoma removed!!
I do think some of it is that we just get used to feeling unwell and if we have a session of feeling slightly better, we think oh this is ok I must be alright after all. 
The problem is the symptoms of PTH overlap with other things like thyroid disease. Until you have a few positive bloods done you won't be sure if it is PTH.
There are many of us on this forum that have been told we are perfectly healthy by doctors and then go on to be diagnosed as having PTH disease.
At least they can't do the "it's the menopause" with you as you are far too young.
At least you have an Endo who has an open approach to you possibly having it, that is an enormous plus and he is doing the right thing by testing for everything.
Good luck with everything and don't hesitate to ask any questions you need.
Amanda xxxx
Amanda Lynne
Amanda Lynne

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Post by Lucie83 Thu May 29, 2014 12:18 pm

Hi Amanda
Yes everything you said is exactly true. I think being dismissed so many times does make you doubt yourself and think maybe I'm reading into too much on Google etc. My results always come back with an elevated Calcium but the PTH is mid range, high end and then normal range again. So, I'm hoping that the bloods I'm waiting on will show it's true colours

Lucie83

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Post by mel123 Thu May 29, 2014 2:49 pm

Hi Lucie

Yes I have good days and bad days.  What makes it harder to deal with is the waiting for appointments and test results.  I always try to anticipate every outcome before an appointment to prepare myself which is draining in itself.  I also feel its exhausting trying to get GP`s and endo`s to listen and I feel like I`m wasting their time.

Take care 

Mel

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Post by Kathi209 Thu May 29, 2014 5:16 pm

It is good to know that symptoms come and go. for some I think it is a everyday problem. I had lots of doubts myself. I am sure that I minimize my symptoms to the doc which is not always a good thing. Try not to worry about the ups and downs of your pth . HyperP will do that. Don't ever feel like you are wasting there time. Good luck

Kathi209

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Post by Lucie83 Thu May 29, 2014 5:58 pm

Thank you all, always appreciated xx

Lucie83

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Post by Little Audrey Fri May 30, 2014 3:12 am

Lucie, if your calcium is elevated, your PTH should be low, not mid-range or high!

Yes, it is normal to have some days that aren't quite as bad as others. My head hurt for over 3 straight years to some degree. It would hurt terribly for several months and then let up somewhat for a few weeks. Then it would get really bad again. My neck would hurt terribly for many months, let up a bit for a few weeks, then get really bad again. My symptoms never went away during the 3 years I was trying to get diagnosed, but some days they weren't quite as bad.

Mel, don't ever feel like you're wasting the doctor's time. You're paying them to listen! Keep talking and talking until someone actually does listen!!

The key here is to NEVER give up!!!

Audrey


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Post by Meggy Fri May 30, 2014 5:06 am

Hello Lucia, given that our blood levels can vary so much I think it would make sense that our symptoms do too? I know I had a word with my boss about how I was finding some aspects of work difficult and she altered my rota (I know, a complete star!) and the day after I was symptom free and felt a complete fraud! I was actually a little relieved when the brain fog started up again!

You poor thing tho, to have so many symptoms and be so young. If that's a doctor's idea of "remarkably healthy" I dread to think what "slightly ill" would look like and as for "really poorly"!!

Meggy

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Post by Lucie83 Fri May 30, 2014 8:02 am

Thank you.
Audrey you hit the nail on the head, this is what I am trying to get my 3rd Endo to agree with me on, if my PTH glands were working as they should then I should have a consistent low level, he agreed with me on that but wanted to start from scratch with his own tests. I'm hoping to get blood results today, although part of me doesn't want to as I'm dreading "your PTH level is within range"
A Calcium & PTH result doesn't lie, does it!?

Lucie83

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Post by Amanda Lynne Fri May 30, 2014 10:59 am

Hi Lucie
Before my op my calcium was always either high or a couple of times high normal and my pth was only ever above range twice the rest were around the 4.5 mark and I had an adenoma removed. Post op they are very similar and I'm trying to convince endo that its not FHH and that I still have another one in there.
Don't doubt yourself you know your body and how you feel better than anyone else, even the "EXPERTS" ha.
Amanda xxxx
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Post by Tigerlily Fri May 30, 2014 2:46 pm

No, don't doubt yourself, Lucie - you know your own body, and it's very common for symptoms to come and go and be worse one day than another. The so-called experts get fixed grooves into their heads about signs and symptoms that are probably as variable as the number of people who are experiencing them.

One told me that on days when my blood calcium wasn't that high I should actually be symptom-free! As I said earlier on the forum, what a ridiculous thing to say - as if we had either the wit or the wherewithal to get our blood tested at that very time on that very day - !!

Come back here often, Lucie. We need your input and you are too young to let this disorder follow you around for the rest of your life without getting some answers. As Amanda says, you do at least have an endo who knows something about HPT. If he's starting from scratch, just make sure he scratches about in double-quick time!

In the meantime, have a good long look at www.parathyroid.com and the HPT pages of www.parient.co.uk and educate yourself (and probably your endo as well!) as much as you can. Knowledge is power with this disorder.

Love from Tigerlily xx

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Post by Tigerlily Fri May 30, 2014 2:49 pm

Ooops -sorry - typo - that should be:

www.patient.co.uk

XX

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Post by Brigitte0 Fri May 30, 2014 3:35 pm

Hi Lucie

I can confirm good days and bad days. A bad week is what I've been having recently and I haven't been on the forum much this week. I can't add anything to what others have said, but don't lose heart and keep on going. With the support from the members of this forum, you can get through the bad days (weeks)! I wish you luck with your Endo and your blood results.

Love

Brigitte x
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