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Saw FP at hammersmith today

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Saw FP at hammersmith today

Post by Tigerlily on Wed Aug 13, 2014 8:54 pm

" ....... keep thinking about when we get chucked out of the Ritz for dancing on the tables and being told by 'da management' that we're all old enough to know better.....that's when we clonk him one with our 24 hour urine collection bottles and collect our ASBOs on the way out ....."

Well, I don't know, I only have to be away for a while and look what you lot are planning for The Ritz trip!  That is just so funny, Jasmine!!! cat  cat  cat  cat 


As Diana said, the traffic in London was a bit grim and the sat nav had it's way with us - when we came out of the Blackwall Tunnel on the road to Dover, we realised something was wrong!! But we had left plenty of time for detours and saw FP as planned.

Basically, it turned out to be a token visit (after my first private consult with him) just to get me booked into the Hammersmith's NHS system, but I am now on his list for surgery within 18 weeks! I just have to go down for US and sestamibi localisation imaging in the next trip and then the next after that will be for the op.  I am so relieved after all this time. He wasn't so interested to look at my pituitary problems and suggested that I get those investigated "locally". Luckily I have all that in hand. I would have been interested in his opinion, but maybe that is not his field.

He told me the risks: basically infection and damage to the recurrent laryngeal nerve but the percentages were no higher than 2% in his case, he said, so that was OK with me.

He also said something interesting about symptoms etc., i.e. that there was no guarantee that the op would relieve my symptoms which could also be due to other things, aging, etc., but that the main reason for offering me the operation was that an untreated parathyroid adenoma was a significant risk factor for heart disease. I had read this before and frighteningly enough what I had read (and I will try and find the paper to post on here) said that one's life expectancy could be shortened by approx. 5-10 years (I think) if a PTH adenoma is causing problems and is not removed.

I don't want to frighten anyone with that information, but it's certainly something to bring up when discussing the subject with endos' and GP's who are seemingly not rushing to help you get a diagnosis.

Totally wiped out now by the journey and elation - but back soon.

Sorry so many of you have had such a bad day today - sleep well and tomorrow will be better.

Lots of love from Tigerlily xxxx

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Re: Saw FP at hammersmith today

Post by Brigitte0 on Wed Aug 13, 2014 9:12 pm

Yay Tigerlily, good news. I know I am really really bad with numbers at the moment, but that should mean that you're all sorted out by Christmas! Hooray and whoop de do and lots of jumping on tables!! At some point in the future Wink

Yes, I have read recently about life expectancy being shortened by about 6 years or more. A worrying thought whilst so many people are being "monitored".

Take care of yourself and put your feet up because you must be shattered. Big cyber hugs of elation coming your way  cheers 

Lots of Love
Brigitte xxxx  cat  cat  flower  Very Happy
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Re: Saw FP at hammersmith today

Post by Jasmine2 on Wed Aug 13, 2014 9:18 pm

Oh Tigerlily, I'm typing through tears of relief for you! I'm sorry you had such a tortuous journey (in every way, and it seems there was no let up from the Gods today either - pft......!), but oh my just look at the outcome you've achieved - at last! Your tenacity and determination to get there has got you there! 18 weeks is no time at all in the bigger scheme of things and I'll bet a pound to a penny you get your op much sooner than that. Once you get your imaging done you'll be within spitting distance of a surgical cure. I think they all say that your symptoms may not disappear, it's a standard endocrine disclaimer, Miles has told me that a couple of times and my point to him was that even if it didn't resolve all my symptoms at least I'll know I've done everything I can to eliminate the risk to my life expectancy of life limiting co-morbidities, which is pretty much what FP said to you. This is the very reason why my cardiologist is sending me for a myocardial perfusion scan (MIBI of the heart basically) because he recognises and acknowledges the risks.

Bit late to raise a glass of PG tonight as I'm off for an early night but tomorrow the toast is yours - right after I return from my appointment with Dr Miles! It's so inspiring and mood lifting to hear some good news, and no one deserves it more than you me dear ......!

Almost there girl ......

Jasmine x
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Re: Saw FP at hammersmith today

Post by Tigerlily on Wed Aug 13, 2014 10:10 pm

Thanks so much, Brigitte and Jasmine - for all your concern and hugs!

It hasn't quite sunk in yet but when you say it could be over by Christmas, Brigitte, that puts it into perspective. I'm so glad you are seeing some movement forwards yourself now as well.

You're right, of course, Jasmine, about doing your best to eliminate as many other problems as possible, and I'm so glad your cardio turned out to be a star in your case. Get a good night's sleep ready to quiz Miles tomorrow - and don't forget it's the PTH that does the heart damage (I think) so he needs to monitor yours.

Thanks again, Ladies - Night Night for now - Love from Tigerlily xxxx

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Re: Saw FP at hammersmith today

Post by Amanda Lynne on Wed Aug 13, 2014 10:32 pm

Well done Tigerlily, it's fantastic that you are beginning the journey to getting surgery.
I'm so happy for you, sorry for not posting more but I can hardly keep my eyes open I'm shattered, as you must be after today's appt.
Much love to you  cheers  I love you 
Amanda xxxx
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Re: Saw FP at hammersmith today

Post by mealinacup1 on Wed Aug 13, 2014 11:36 pm

Hi Tigerlilly,

I am soooooo happy for you, only 18 weeks to surgery! FP does come across as a very focused man in his field of medicine and i'm so excited for you.  cheers 

Well done Tigerlilly for never giving up, whilst inspiring the rest of us on the way.

Take care and have a good rest. 

Diana  x

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Re: Saw FP at hammersmith today

Post by Kathi209 on Thu Aug 14, 2014 2:52 am

Yipee Tigerlily, good news indeed. Won't be long now.  cat  cat  cat Hugs Kathi

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Re: Saw FP at hammersmith today

Post by NancyMi on Thu Aug 14, 2014 3:21 am

This is wonderful news.  I was thinking of you while I was at work today. Glad you have a good Dr. working on your case.  So glad you did not let anyone deter you.  

I think you will feel much better after surgery. 

Keep us posted.   cheers  Smile

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Re: Saw FP at hammersmith today

Post by Lucie83 on Thu Aug 14, 2014 6:49 am

Excellent news!

How reassuring to know, that the naughty Adeonma will bite the dust by the end of 2014. You can def raise your glass to a healthy 2015. Great news for you.

Lucie x

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Re: Saw FP at hammersmith today

Post by Tigerlily on Thu Aug 14, 2014 12:26 pm

Thanks so much, Everyone, for all your caring thoughts and good wishes!

I really don't think I would have come this far without your support and that of everyone on the old forum too.
And that includes Simon - I wish he was around to celebrate with me as well.

The adenoma is not out yet, of course, and my serum calcium recently dropped to 2.39 (x9.43 for US) which FP found a little odd yesterday, but he agreed it was probably one of those times when serum Ca dips into the normal range. But at least I feel that I have at last seen the right person in FP. I have seen so many "wrong" people, I can tell you!

He diagnoses from the blood test results, which is the way Dr Norman says it should be done as well. He then books the patient in for surgery, and the US and sestamibi scans are arranged prior to the surgery date.

If anyone is struggling to get a diagnosis of parathyroid disease (or to get it ruled out) I would suggest they email a set of blood test results to FP just as Lucie (I think) did the other day. He will then make the appropriate recommendations, I'm sure. How wonderful to be able to access the thoughts of these people direct!

Thanks again, Everyone, for your love and support. I'm going to clean the house today whilst I'm on a high and then sit down later with a large Chilean red and toast you all in the hope of further progress for everyone.

Lots of Love and Cats all round  cat  cat  cat  I love you  I love you  cat  cat  cat  from Tigerlily xxxx

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Re: Saw FP at hammersmith today

Post by Amanda Lynne on Thu Aug 14, 2014 2:11 pm

Hi Tigerlily
well done you Very Happy 
You so deserve this, its been a long time coming and yah boo sucks to all those who doubted on the way to this point, that means you Mr A McLaren !!!!
You will clean your house with renewed vigour !!! and you thoroughly deserve that glass of Chilean red make sure its the biggest you can find. My Son bought my husband one that holds nearly a whole bottle !!!! 
He hasn't used it yet !!!
Lots of love and cats to you  cat  cat  cat  I love you  I love you  I love you  I love you 
Love Amanda xxxx
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Re: Saw FP at hammersmith today

Post by Tigerlily on Thu Aug 14, 2014 6:41 pm

Hi Amanda
Thanks for the vote of confidence! I've hoovered all over the house and even succeeded in getting some stains out of the kitchen carpet!
Yes, Mac da K - haven't "informed" him of my impending op yet. Am just savouring the thought and wondering how best to do it to get the most buzz out of it!
Soon be Chilean red time - thanks for the permission to make it a very large one!

Have a good weekend, Amanda - Lots of Love from Tigerlily xxxx

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Re: Saw FP at hammersmith today

Post by Lucie83 on Thu Aug 14, 2014 7:27 pm

Yes I would definitely recommend emailing him. I haven't been diagnosed but he did say that from my blood tests HPTH is unproven rather than absent and to get a few more blood tests under my belt. I will be contacting him again when I have a few more to report and see what he advises. I too Tigerlily, have seen far too many people that have been dismissive. So pleased for you.

Take Care
Lucie xx

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Re: Saw FP at hammersmith today

Post by Tigerlily on Thu Aug 14, 2014 8:58 pm

Thanks, Lucie.

 He's a great guy and really inspires confidence. I'm sure he'll be able to advise when you have a few more tests available for him to look at. He really knows about the biochemistry of PTH which not many people do!

Love from Tigerlily xx

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Re: Saw FP at hammersmith today

Post by Amanda Lynne on Thu Aug 14, 2014 9:00 pm

I so can't wait to get my all clear from FHH so I can contact FP he sounds really lovely.
Got email back from Endo secretary, my latest bloods and growth hormone test is being sent by post !!!!! I bet it's second class xxx
Love Amanda xxxx
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Re: Saw FP at hammersmith today

Post by Tigerlily on Thu Aug 14, 2014 9:02 pm

Never mind, Amanda, it should be with you by Monday - second class is often faster!
Let us know the results when you have digested them.
Love Tigerlily xxxx

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Re: Saw FP at hammersmith today

Post by Amanda Lynne on Thu Aug 14, 2014 9:11 pm

Yes I will, thanks Tigerlily. I saw my Twin Sister today she said I seemed poorly and I had lost my sparkle. After she went, I cried, I don't want to be like this I just seem to be getting worse.
A xxxx
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Re: Saw FP at hammersmith today

Post by Little Audrey on Thu Aug 14, 2014 11:47 pm

Tigerlily, I am so sorry I haven't had a chance to get on here and read this post until now!!  I've been to the hospital twice in the past 2 days for tests, and I spent quite a bit of time there yesterday!!!    Nothing serious.  The hospital was just PACKED with people needing tests!

So anyway, YAY for you!!!!!     What GREAT news!!!   Everybody here is right, 18 weeks is not long at all when you think you've been suffering for years already!      That time will fly by, and soon you will be well again!!   I am SO very happy for you!!

By the way, Dr. Lopez also told me that surgery might not cure all of my symptoms, and it didn't, but it took care of some biggies for me, and for that I am VERY grateful!   I can now work on taking care of the rest of them.

And I will be dancing longest and hardest on those tables!    I think I might even go out and buy some new dancin' shoes for the occasion!     And dance we will!!!!

Audrey

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Re: Saw FP at hammersmith today

Post by NancyMi on Fri Aug 15, 2014 12:23 am

Amanda, 
   I vote for pHPTH not FHH.

Keep us posted.

xxx, Nancy

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Re: Saw FP at hammersmith today

Post by NancyMi on Fri Aug 15, 2014 12:28 am

Tigerlily,
     I have read more than once how pHPTH can be very damaging to the heart. 
This is a little older but I think it is still relevant.


http://eurheartj.oxfordjournals.org/content/25/20/1776.abstract?sid=d7341fc7-187a-4441-a3fc-537afb498297 


xxx,  Nancy

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Re: Saw FP at hammersmith today

Post by Tigerlily on Fri Aug 15, 2014 10:34 am

Hang on in there, Amanda - I know how sparkle-free you can get, but wait till you meet FP - he renews my sparkle by just looking into his concerned eyes!!

I agree, Audrey, even the relief of some of the symptoms would be a result - like the IBS and some of the brain fog. They haven't made a table strong enough for all that dancin' we're gonna be doin'  at The Ritz  !!

Nancy - that is so useful - thank you for posting that paper about HPT and heart disease. I took a copy to my GP today because the NHS's main hobby horse at the moment is reducing as far as possible any risks factors for heart disease in all patients. Guess who else will be getting a copy? Dr W, Dr F, Dr B, MdaK ........
I'd better buy some more copier paper!!

Love from Tigerlily xxxx

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Re: Saw FP at hammersmith today

Post by Meggy on Fri Aug 15, 2014 6:01 pm

Excellent news Tigerlily:-)

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Re: Saw FP at hammersmith today

Post by Tigerlily on Fri Aug 15, 2014 7:07 pm

Thanks, Meggy - nice to see you here again. How goes it for you?

And Nancy - I posted earlier to thank you again for the paper you quoted but my post doesn't seem to have registered.

That is such valuable research - you always come up with the good ones, Nancy!

I took it to my GP today and a lot of other experts (Dr F, Dr W, Dr B, MacdaK, Dr W, and his registrar ....) will be getting a copy too. As I said in the post that didn't register - will have to go and buy some more copier paper!

Thanks again, Nancy - hope you are feeling better at the moment? Do let us know.

Love from Tigerlily xxxx

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Re: Saw FP at hammersmith today

Post by Amanda Lynne on Fri Aug 15, 2014 7:32 pm

Yes hi Nancy how's it all going with you.
Love Amanda xxxx
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Re: Saw FP at hammersmith today

Post by Little Audrey on Sat Aug 16, 2014 11:00 pm

Amanda, if your sparkle had been lost, it will surely be found again before much longer, and you will glow brighter than ever!! Cry when you need to. I've shed many tears myself. Then get back up, dust yourself off, march forward, and know that much better days are ahead!

Audrey

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