I got one! I got one!

Hi Everyone

I got one! It lit up on the ultrasound today!                     & 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" !     

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

Tigerlily 
I'm soooooooooooooooooo ooooooooo happy for you I can't contribute to the MEN1 as I know nothing about it.
All I know is this news is brilliant and it means you are now on the road to better health and your life back yay yay and thrice yay  
Lots of love Amanda xxxx

Congratulations Tigerlily.

What a huge weight off your shoulders, let's hope surgery won't be too long to wait! I'll raise a glass tonight, to good health!

Lucie xx

Great news Tigerlily       

Nelly

Wahaaaaaaaay! I suddenly wanted to start singing Morecambe and Wise's "bring me sunshine" ....... 

I know there's a way still to go yet Tigerlily, and a few more hoops to jump through, but OMG girl ...... look what just happened???!!!!! The words "Without pain, how could we know joy?" spring to mind, but my brain won't let me remember who said it.....grrr; but suffice it to say that the existence of cauliflower does not, in any way, affect the taste of chocolate!  Well, that all came out in a jumble, probably sounds like a load of old scribble, but I know what I mean .......


Jasmine x

Tigerlily wrote:I have a.jpeg of the US scan if only I could figure out how to post it here

With my apologies for not preparing this previously, I have now written a procedure for adding images to posts.

https://hyperparathyroid.forumotion.co.uk/t212-adding-images-to-your-posts#2696

Edwin

Wooowoooo yay and Cheers!   You showed them, didn't you?!!

Brilliant news that you now have PROOF of something you knew was there!

Love, smiles and hugs

Brigitte xx

HALLELUJAH!!!!! Oh, Tigerlily, this is WONDERFUL news!!! I just got home and got word of this from Jasmine via a Facebook message. I just had to get on here immediately to congratulate you and let you know how very happy I am for you! Oh, how I remember that feeling of FINALLY being diagnosed!!! I actually have tears in my eyes right now!

Wish we could all get together to celebrate!

No, Dr. Audrey isn't wrong too often.   

I always go out on Wednesdays to run errands and treat myself to lunch. EVERYTHING was going wrong today! This wonderful news just made up for it all! So VERY happy for you!!

Dr. Aud

Wow Dr Aud, that's some celebration     Just needs some cats             

Love
Brigitte xx

Thanks, Brigitte. How did I forget the cats?!!

Hi Tigerlily,
Ohh that is amazing and wonderful news for you!  I am so glad that they actually found it and you have proof of where it is.  It is real progress and is a step closer to being cured.  I hope they don't keep you waiting too long now.
Sue x

Hi Tigerlily,

I am so pleased for you, thank God the little blighter showed up, onwards and upwards so to speak. 

I  hope your surgery date is quick, your health improves and that you return to the person you were, way before this horrible Parathyroid Disease took hold. 

As everyone knows, when you have a  parathyroid tumour, it slowly steals your enjoyment of life.

Take care and good luck.

Diana

Fantastic news Tigerlily:-)

YEEHAW Tigerlily It does make things so much easier when the little bugger shows up. I pray you don't have men1. and that this will be a easy surgery with a great outcome. Let us know whats next. You guys owe me a dollar, I said that  you'll will make it to surgery before me. Such a relief to get some answers, this hyerP will make you bonkers just trying to figure out what all could be wrong.

The only thing I know about testing for MEN it calls for genetic testing which really is only a blood test in the USA it takes about 3 weeks for the results. Not totally sure but I think if you test positive for MEN1 they more than likely will take 3 and a half para's out because in MEN your chance of having persistent hyperP is greater. Okay hopefully none of that for you. So happy for you. Moving forward . Cheers , here is to better health.

So grateful for all your good wishes - thanks so much to everyone - and for uplifting thoughts on chocolate/cauliflowers (you know who you are!), mega quantities of cats and fireworks!

Having a rest at the local beauty spa today. Bought a voucher last year and never had the energy to go and enjoy it! But I'm feeling a bit more sprightly today for some strange reason, so will go and have a swim and get my nails done.

Lots of love, Everyone, from Tigerlily xx

Thats good they have found it, Hope you don't wait too long for them to remove it.
Mary x

Oooooo Tigerlily swim and nails you are spoiling yourself and why not, you have to celebrate brilliant news.   
Has it sunk in yet ? I would so love to be with you when you see your GP, you will have to describe it to us in detail. X
Onwards and upwards.
Love Amanda xxxx

Hi Tigerlily,
 Amazing, i knew you had one ! especially with all the symptoms you had. well, they are a few Doctors who might have to eat their words.

best wishes

Lozza

Thanks Mary, Amanda and Lozza!

Been to Spa - had facial, massage and nails done and spent the rest of the time resting and planning next move. At least I don't have to prove pHPT adenoma now, but need to get to the bottom of strange headache and jaw swelling. Seeing GP tomorrow early - have framed US scan to show him - slap - on his desk. Hoping that as I was right about it (and everyone else was not - and heads will roll, but only later when I can show them the photo of the adenoma taken out as Dr Norm does) he will agree to an urgent MRI of jaw and head to rule out ossifying fibroma of the jaw     and possible pituitary adenoma (pressing on cranial nerves and impinging on eyesight etc). It would be good to rule out a pancreatic issue as well in view of the strange rib area pain that I still have. These 3 symptoms together are indicative of MEN1, which I really don't want to have.

Only then will I be happy to point myself towards an op to remove the pHPT adenoma. Note that I keep referring to a pHPT adenoma - that's PRIMARY, all you goats and monkey medics out there, not the full set of primary, secondary and tertiary, too!!

Saddle up, girl - off we go again, but maybe not such a long journey this time.

Love from Tigerlily xx

Sounds like you had a very pleasant day there, Tigerlily!! A celebratory spa day; what could be better?!!

As far as the headache, that was a symptom that plagued me throughout all of this! Mine hurt to some degree every day for 3-1/2 years. Most days now it doesn't hurt at all, but there are still little periods of discomfort every now and then.

I never had Jaw pain. Hmm.......that was funny; I just typed "Jaw pain, I never had," but it sounded too much like Yoda, so I changed it.   

Yes, a few more goats and monkeys put to shame!! Way to go, Tigerlily!

Won't be long now! Adios adenoma!!

Audrey

Hi Dr Aud!

Thanks for the reassurance about the headache - I hope it's just pHPT-related and that the swollen jaw is just a stray lymph gland that has risen up as part of the congregation!

There are quite a few people I've consulted that need to go on the Tigerlily PTH Course now! I've had a few gleeful hours since the positive US thinking of how I might send them for re-education!

I could send Dr Norman a copy of my US scan to let him know that he was more than 80% right in his diagnosis. He also gave me hope when I was being pushed back by the others. Do you think he might have cooled down a bit by now?! Bless him - he's doing wonderful work.

Adios adenoma! That is just wonderful, Dr Aud!! One of your very best!!

Cats to you                !!

Love from Tigerlily xx (still laughing!)

Hi Tigerlily,

Good for you in having a spa day, you deserve a treat. now you can go forward with all of this. Are you going to let our "fav hospital know " ?

best wishes
Lozza

The Rising up of the Lymph Glands sounds like a horror film !  
Yoda............. Sorry I mean Audrey I love the Adios Adenoma   
I too hope to be saying that one day as I ride off into the sunset like Clint Eastwood with a poncho and a cigar. Bit sweaty for a poncho today and I don't smoke, but I can ride so that's one out of the three. I hope I'm not quite as wrinkly as old Clint either, mind you dealing with my Endo is adding to the wrinkledge !! by the day  
Tigerlily I do hope you are going to celebrate extra well tomorrow as if I'm not mistaken it's your Birthday (correct me if I'm wrong) and you have brilliant news about the adenoma so double the celebrations. 
Love Amanda xxxx

Happy Birthday - Tigerlilly- have a brill day