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I got one! I got one!

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I got one! I got one!

Post by Tigerlily on Wed Jun 11, 2014 5:49 pm

First topic message reminder :

Hi Everyone

I got one! It lit up on the ultrasound today!     cat  pig  bounce  Twisted Evil  alien  cat  cat  Rolling Eyes  & guinea pigs, stoats, crocodiles, GOATS & MONKEYS!!!!
Thank you Dr Audrey - you were right!!

So ridic, isn’t it, to be so pleased about something like this?! But it's taken such a weight off my shoulders to actually see it on the US screen today.
It's pea-sized like Lozza's and measures 4.3mm x 4.00mm.

It hasn't really sunk in yet, except I'm so pleased that I have an excuse for having been so darn crabby for so long! And I had a slight delicious feeling over lunch that my revenge (bit strong - but you know what I mean) might be very sweet very soon (but not until it's totally confirmed and I'm booked in for surgery).

Although FHH might not be on the horizon in my case as I've had a high urine calcium and a middling one recently, I think I need to get checked out for MEN1. I think I have some pituitary issues too and the combination of those and HPT can indicate MEN1, especially if there are any pancreatic problems, although I don't really want any of those. I do have that strange rib-cage-area pain, though, so must get MEN1 checked out.

Like Brigitte, I shall be drinking tonight to a single HPT adenoma, the removal of which will totally change my life. I know I can't go back to being the person I was, but a happier and healthier one would be good. I have a.jpeg of the US scan if only I could figure out how to post it here - and I've put a copy of it in a really pretty diamante picture frame to take with me to the GP's on Friday to take from my bag and slap onto his desk and say "I told you so" !    bom 

Bloods back today show the PTH has dropped from its all-time high of 12.7 to 6.35 (range: 1.6-6.9) but the calcium has jumped from 2.49 to 2.62 (range: 2.2 to 2.6) which is my second reading out of the top of the lab range (even though by only a widgy bit - the other one was 2.73).

The US of the jaw area showed up an enlarged lymph node in the area of the swelling, but of course US doesn't see bone, so I need something else to check that out. Think I might have to insist on an MRI pronto to rule out HPT-Jaw Tumour syndrome, because that type of ossifying fibroma does not disappear when the HPT adenoma is removed.

All comments welcome, especially on how/what to get tested for MEN1 to get that out of the way, before I gallop off into the sunset of surgery!

Love from Tigerlily xx

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Re: I got one! I got one!

Post by Tigerlily on Fri Jun 13, 2014 10:24 am

Hi Amanda and Lozza - thanks so much - yes, it's my birthday tomorrow and we're out to lunch today. What a birthday gift the US scan was!

I've just come back from the doctor's where I did slap a framed photo of the adenoma scan onto his desk and we had a good laugh about it. But then I looked him in the eye and said "but seriously now, I do feel vindicated in all of this" and he said yes, I should feel that. He didn't quite say well done, but almost.

So, now I'm seeing a consultant endo on Tuesday to get the head pain diagnosed and the jaw swelling looked at by someone who should be able to rule out a bone connection with pHPT, so I can flit down to Fausto's (makes him sound like a Spanish Restaurant!) on Thursday and get his take on everything, get plugged into the NHS system and say Hi Ho, Silver and Adios Adenoma!

Thanks Dr Aud - I really like that one!

I have finally been offered an US scan by Addenbrookes but my blood test results have to be reviewed by the sonographer first, so they will probably be chucked back as "calcium not high enough; all blood levels within range". Even if I get an US appointment, it will probably not be till September at the rate they move, by which time I would hope I would be adenoma-free and sitting up and taking the lightly boiled egg!! (Some cats, some cats, need some cats here:  cat  cat  cat  cat  cat .
(That's better!)

I'm going to put it all on the back burner for now and go out for a nice lunch.

Love to you all from Tigerlily xx

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Re: I got one! I got one!

Post by Amanda Lynne on Fri Jun 13, 2014 10:29 am

Have fun best wishes for a great day tomorrow. cat  cat  cat  cat  alien !!!!!??????
Love Amanda xxxx


Last edited by Amanda Lynne on Fri Jun 13, 2014 10:30 am; edited 1 time in total (Reason for editing : PTH induced typo)
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Re: I got one! I got one!

Post by Brigitte0 on Fri Jun 13, 2014 6:51 pm

You are having a fun filled few days Tigerlily! I'm so glad that things are looking up for you and you're so positive  cat  cat  cat  cat  cat  cat  

Have a lovely Birthday weekend and then onwards and upwards for your appointments next week  Very Happy 

Love
Brigitte xx
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Re: I got one! I got one!

Post by Tigerlily on Fri Jun 13, 2014 8:54 pm

Thanks Amanda and Brigitte - and for the cats and the strange cheerful green thingy!!

Yes, it's cats-a-go-go at the mo!  cat  cat 

Love from Tigerlily xx

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Re: I got one! I got one!

Post by Brigitte0 on Fri Jun 13, 2014 9:34 pm

Cats a-go-go-at-the-mo-mo?!  cat  cat  cat  cat  cat  cat  cat  cat  cat  cat 

(It's been a long, achey day!)

Love
Brigitte xx


Last edited by Brigitte0 on Fri Jun 13, 2014 9:37 pm; edited 2 times in total (Reason for editing : Forgot my name and then couldn't spell it!!!!)
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Re: I got one! I got one!

Post by Tigerlily on Fri Jun 13, 2014 9:51 pm

Ah, bless, Brigitte - sorry it's been an achey day. It can really get to you, can't it?
When the weather's good, everything else should be good, too.

I hope tomorrow's a better one for you - Love Tigerlily xx

PS. Have a goofy rabbit from me    albino  - they're quite nice too!

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Re: I got one! I got one!

Post by Little Audrey on Fri Jun 13, 2014 10:19 pm

HAPPY BIRTHDAY TO YOU.   HAPPY BIRTHDAY TO YOU.   HAPPY BIRTHDAY, DEAR TIGERLILY.   HAPPY BIRTHDAY TO YOU!!    

Hope you have a wonderful birthday!!     Yes, spotting that tumor was a most wonderful birthday present!!

Enjoy your special day!!

 clown  clown  clown  How about some clowns to make us all laugh?!

Dr. Aud

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Re: I got one! I got one!

Post by NancyMi on Sat Jun 14, 2014 1:20 am

I am so ecstatic for you!   I believed all along with your blood work and symptoms that you had pHPTH disease.   So glad the diagnosis is clear and you'll be having surgery soon.

We are all so happy!!! bounce  sunny  Smile 

xx,  Nancy

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Re: I got one! I got one!

Post by Kathi209 on Sat Jun 14, 2014 1:24 am

Happy Birthday T cyclops  cat  flower

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Re: I got one! I got one!

Post by Tigerlily on Sat Jun 14, 2014 12:51 pm

Hi Audrey, Nancy and Kathi

Thanks so much for your support and birthday wishes.

It's such a relief not to have to fight for a pHPT diagnosis any more (I hope). I have another endo appointment on Tuesday to check out the swelling jaw but at least now I'll be able to say "I have just been diagnosed with pHPT" rather than having to start by trying to convince them of that, just as my own theory. The appointment always used to get used up by that bit, after which they were happy to label me as a mad self-absorbed over-medicalising person and just wanted me out of their office as soon as possible!

I'll let you know if things go any differently on Tuesday!

Have a great weekend, Love from Tigerlily xx

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Re: I got one! I got one!

Post by Little Audrey on Sat Jun 14, 2014 1:12 pm

I know the feeling well, Tigerlily. I can remember going to all of my doctors' appointments, having to say, "I know I have HPT, but I haven't been diagnosed yet." I KNOW they thought I was a crazy, old woman, who had nothing better to do than gripe about my health! It was such a great feeling to go to an appointment and say that I had finally been diagnosed!! I'm so very happy that you too can enjoy that feeling now!!

You know, to this day, not 1 of my doctors has commented on the fact that I knew what I was talking about the entire time, and I was right in making my diagnosis. I think that bothers me more than anything. I have a great relationship with my PA. I would think she would have been all smiles and congratulated me when she saw me after surgery, but it wasn't like that at all. She was happy for me, but never once acknowledged my hard work and my persistence in striving to be well again. That was a big disappointment. I still have not seen the doctor who laughed in my face and refused to look at any of the material to took in for her to take a look at. At this point, I don't know if I even care. She works with my PA, and I have told my PA how I feel about her; I'm sure she has relayed that to her. My endo also said nothing to me after surgery. It was just a regular appointment.

Don't let your doctors get you down if they treat you the same when you share the glorious news of your diagnosis! Try to remember, goats and monkeys don't always act as expected!!

Hope your enjoying your birthday weekend! What a great time of year to have a birthday!

Dr. Aud

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Re: I got one! I got one!

Post by Amanda Lynne on Sat Jun 14, 2014 1:44 pm

Yes Hippo Birdday to Ewe Tigerlily Mrs Newly Diagnosed PTH Person  Very Happy 
Hope you have a wonderful Day, you deserve it.
I know exactly what you mean about starting the whole PTH story every time you speak to someone medical and the getting That !!!! Look !!!! From them. Shocked 
Love Amanda xxxx
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Re: I got one! I got one!

Post by Tigerlily on Sat Jun 14, 2014 4:03 pm

Thanks Dr Aud and Amanda!

I suppose they dare not say anything because they know they missed something. Not everyone's perfect - but you would have thought one or two would have got close with the very number of these experts that we have all seen.

My GP is playing the game quite well at the moment. His referral letter to FP reads:

" Mrs Tigerlily is wrestling with the possibility of having intermittent normocalcaemic hyperparathyroidism. This has been very difficult to pin down owing to fluctuating blood test levels (and fluctuating Consultant opinions). "

He obvs doesn't realise however that it is the fluctuations that are also a sign of this abnormality. As I understand it, when the system is working normally calcium fluctuates by as little as 0.2 UK units within what is a very tight range.

Also, I think some people use the term "hyperparathyroidism" literally - to indicate increased parathyroid hormone levels due to any cause. Whereas, correct me if I'm wrong, we on the forum here seem to use it as a description for the whole HPT syndrome of having high calcium as well as a generally high PTH, with all the symptoms that involves.

Got to have a lie down now - brain hurting as well as head!

Love and cats meantime from Tigerlily xxx Laughing  cat  cat  cat

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Re: I got one! I got one!

Post by Brigitte0 on Sat Jun 14, 2014 5:17 pm

Hi Tigerlily and Many Happy Returns of the day! I hope it's treating you well, even if you have had to have a lie down: perhaps you're gathering strength for the evening birthday celebrations!!! (I've had to put my feet up after walking my border collie and a kind daughter has cleared up the mess Meg made of drinking the water bowl dry i.e. there was more water on the floor than was ever in the bowl!) Incidentally, have you seen the thread on the Off Topic section?

Lol at the "fluctuating Consultant opinions"! Hope FP takes note.

Love and imaginary cats (because my computer has taken exception to emoticons for some unknown reason)

Brigitte xx
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Re: I got one! I got one!

Post by Amanda Lynne on Sat Jun 14, 2014 5:32 pm

Tigerlily
After reading the referral letter I bet you felt like wrestling with the GP, I see a Mick McManus head lock being appropriate. 
A xxxx
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Re: I got one! I got one!

Post by Tigerlily on Sat Jun 14, 2014 7:11 pm

Hi Brigitte - yes, we had a second-hand collie dog named Tor (lovely name, lovely dog) but we were also all aquagliding in the kitchen when he had a drink after a walk!!

Need to have a look at the Off-topic section - thank you!

Yes, Amanda - Giant Haystacks an' all that! But he writes a good letter when I ask him to (even if the info he gives is a bit suspect sometimes) - small mercies, an' all that.
He has referred me to the oro-maxillary man to have a look at the jaw swelling, so I'm grateful for that. As I said - small mercies ....

Hope things move along more quickly soon for you both.

Lots of Love from Tigerlily xx

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Re: I got one! I got one!

Post by Katek1702 on Fri Jun 20, 2014 8:17 pm

Hi Tigerlily, just catching up on the posts as have been off here for a week or so (daughter got married so have been v busy). So pleased for you that you have got your diagnosis and hope that things move forward quickly for you now. Xx
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Re: I got one! I got one!

Post by Tigerlily on Fri Jun 20, 2014 9:34 pm

Thanks so much!
Hope it was a wonderful wedding for you all!

Love Tigerlily xx

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Re: I got one! I got one!

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