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Oops, no, spoke to soon - no MRI

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Kathi209
Tigerlily
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Post by Tigerlily Thu Jun 26, 2014 7:24 pm

Hi Everyone

As we all knew (but I was hoping against hope ..) a GP (especially a young upstart locum) can't be trusted to order an MRI.

It all got changed when he ran it past the local GP at the practice and what I got was an urgent referral to a neurologist.

Not bad, I thought, until the neuro said I needed to be referred to an endo - and I've already been through two local endo's who came down on the side of Vit D deficiency and won't consider "new evidence".

I've been all day trying to sort this out and at the point at which I felt an incandescent glow coming on, I rang the endo's secretary and let her have both barrels. To be fair, she listened to everything I had to say, and I had rather a lot. When the fire alarm went off behind her she told me she really should put the phone down and call me back, but I told her to stay where she was as it was probably only a bell test! (Fire being quite a good bit of imagery here as regards my anger and frustration!)

The bottom line is that I've sent her all my documentation about visual field tests, poor peripheral vision, macular degeneration in both eyes, double vision in one eye - I could go on but it's boring, especially when you add in all the cysts (Goodbye, and thanks for all the cysts!) - OMG! But she will bring it all to the attention of the (new) endo on Monday and he will call me to discuss in the afternoon. We shall see.

Then I turned the gun towards Addenbrookes. Their own US guy had seen the 2cm torpedo in my neck and I wanted to know what was their "plan, going forward" as they say. Well, I've managed to get an appointment next Thursday in the Thyroid Clinic to discuss the matter, and the registrar who called me back did at least have the grace guardedly and very quietly to describe the PTH adenoma's size as "impressive". Little cat!

That's all for now, Folks!       I'm exhausted, but am perking up a bit toasting Jasmine's success with the Rose-A.

Love to you All and thanks for caring, as I know you do - Tigerlily xxx cat  bom  bom  cat

Tigerlily

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Post by Kathi209 Thu Jun 26, 2014 7:57 pm

Tigerlily  I'm so sorry they pulled the rug out from under you. Do you think the secretary pull the fire alarm herself What a Face  I really hope you get that MRI  with the things you have going on, I would think a MRI would be in order.

Best of luck, here some cats cat  cat  cat  cat  cat

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Post by Lucycatnaps Thu Jun 26, 2014 9:07 pm

Hi Tigerlily,
Ohh Boy do I know how that feels, you have my total sympathy especially as it would seem the logical thing to do with your symptoms and jaw swelling.  I am glad though that you managed to get an appt  for next week with hopefully someone who can order it for you.
Hugs Sue x
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Post by Brigitte0 Thu Jun 26, 2014 9:31 pm

Hi Tigerlily 

I hope everything comes together and you get your MRI sooner rather than later. Keep in fighting mode Tigerlily! 

Love and hugs 
Brigitte xx
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Post by Amanda Lynne Thu Jun 26, 2014 10:35 pm

I'm sorry you didn't get the MRI Dr Singh obviously didn't have much clout and probably got shot down in flames, I wonder if those were the ones sending off the fire alarm at Endos office.
Good luck with your new appt.
Are you sure that torpedo you've got in there isn't a  cat 
Love Amanda xxxx
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Post by Tigerlily Thu Jun 26, 2014 10:58 pm

Bless you, Amanda - have just typed a whole long post and it's disappeared.

But Kathi's comment about the fire alarm being set off intentionally by the secretary on the receiving end of my rocket, and your cat-torpedo comment have just about calmed me down for now. Thank you!

Tigerlily

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Post by lozza Fri Jun 27, 2014 10:19 am

Hi Tigerlily,

I would give Addenbrookes a chance, they have given you an appointment quickly which for them is impressive, it was their US- scan . So they should take action.

best wishes

Lozza
 cat  cat  cat  cat  cat  cat

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Post by Tigerlily Fri Jun 27, 2014 2:01 pm

Yes, I will do, Lozza, thanks for the suggestion.

Dr W's registrar actually called me back last night at 5.30pm. Needless to say, she was very guarded and said that a sestamibi confirmation would be needed - but of course that's using imaging for diagnostics, where the diagnosis should have been made biochemically on the bloods etc. So I won't be having a sestamibi just for their own confirmation because I won't be having the op there, even if they have someone to it. I'd only have to have another sestamibi with FP anyway.

Yes, they did give me an early appointment. Apparently they keep some back for "emergencies" and the person to speak to is Nadia on the appointments line. Although I had been in touch with Dr W's secretary first thing in the morning of the Thyroid clinic for her to tell them I was on the warpath.

You're right about the US department restoring my faith in Addenbrookes. Dr Bremmer was a star and showed me the picture and described it to me. Peter took a good photo on his phone as well for posterity (and in case it takes ages to get the report and scans from Addenbrookes later).

So it's back to the Thyroid Clinic on Thursday next week.

What's happening with you at this time, Lozza? Let us know.

Love from Tigerlily xx

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Post by lozza Fri Jun 27, 2014 3:54 pm

Hi Tigerlily,
 Yes the confirmed the same with me , they only do a mibi scan if they are planning surgery. I guess you need to see what they will offer when you see them next, but if you are planning on going forward with Mr P. they I would have tests done through him, otherwise you might end up have these test done twice- which won't be nice.

Addenbrookes really like high calcium regardless off how high PTH or what us shows- but this is only my experience with them, so I am happy to go through my GP at the moment.

I am on my monthly blood tests - I will than review i with GP and see where I want to go .

See what they say next week.

best wishes

Lozza cat  cat  cat  cat  cat some cats to help.

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Post by Tigerlily Fri Jun 27, 2014 5:46 pm

Thanks, Lozza - cats do help a lot!

I think the registrar mentioned that they will be referring me to Dr Helen S in the PTH Clinic. Ha!! That's something they should have done 16 months ago, instead of trying to argue me out of having a condition they knew nothing about and I knew I had all along.

Thanks to you, Lozza, I know that the PTH Clinic is full and that it will be an age before I get seen there.

I'm looking to get the possible pituitary problem ruled out now, so I'll be insisting that I see someone who knows about that (Dr Mark Gurnell apparently) rather than waiting for a diagnosis of PTH from Dr S when it could be seen from my blood results for the last 16 months.

I take your point about the high calcium - they really want to see it, don't they? It's the same as the local endo whom I spoke with this week: "Oh, no, I can't be convinced you have PTH. We see people with calcium of 3.0 and 3.5 - you're nowhere near that."

No, and I don't want to be!! Have this lot not heard of normocalcemic pHPT?? I have 5 other diagnoses for that under my belt already, so it doesn't really matter, but you get sick of hearing about their need for high calcium, don't you?!

Sorry - rant over, Lozza - had a really bad day yesterday! Glad to know you're fairly happy with proceeding with your GP - at least you'll see her every 4 weeks instead of every 12, like at Addenbrookes.

Have a good weekend - and cats to you and Dudley  cat  alien  alien  cat - Love from Tigerlily xx

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Post by lozza Fri Jun 27, 2014 7:32 pm

Hi Tigerlily,
They only do 1 parathyroid clinic a month- which doesn't always run. They also do general endocrine clinic- which is clinic i go to, this is for variety of endo problems ( ours not theirs) it doesn't matter which one you go to, you see the same registrars , we have probably been dealt with by the same registrar any way. Wh than feeds back to consultant.

More than happy to be with GP- parathyroid clinic wait was 6 months  between appointment - it is even longer than the thyroid clinics.( this is only mine experience)

I would listen to what they say and than see what you want to do, might be worth passing on Ultrasound scan info, to Mr P in hammersmith, see what he thinks. 

I  am having monthly bloods due to parathyroid and my b12 anaemia - who knows if this is linked or two different problems !!
once i have a few more calcium bloods i will be able to review with her.

I am also angry about all of this waiting, i understand completely. I just need a bit of time to take all of this in. I am a medical wimp !!

best wishes

Lozza cat  cat  cat  cat  cat more cats to cheer us up

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Post by Tigerlily Fri Jun 27, 2014 8:00 pm

Thanks, Lozza - you are my spy in the camp!!

Yes, I'll send all the info to FP and hope that I can get transferred to him pronto - well, anything will be quicker than Addenbrookes can react - but I might be surprised, you never know.

My GP should have written the referral letter to FP's NHS Clinic at the Hammersmith today.

I'll keep you posted on progress.

Love from Tigerlily xx

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Post by Guest Sat Jun 28, 2014 1:35 pm

Hi Tigerlily

I really do sympathise with the long waits between appointments, tests, having to meet a certain medical criteria ( high calcium) i think some Doctors and Consultants forget that we are ILL and are desperate to be well again!

I hope your referral letter to Hammersmith gets things moving for you, i just found out a couple of days ago that my referral letter from my Consultant Surgeon to FP at Hammersmith was never sent, the word used was OVERLOOKED! (i was so mad i nearly started crying on the phone as i was so frustrated).

I have been sitting here waiting for three and a half weeks for a appointment that was never going to come!

I was assured that a fax marked urgent was going to be sent right away to FP secretary and that i would hear from them shortly ( might have to check that up, me thinks)

Anyway if i get there before you i will let you know and good luck to you.

Diana x

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Post by Amanda Lynne Sat Jun 28, 2014 2:23 pm

Oh Diana
These people really don't care that they are dealing with out health and our lives do they.
Good luck and I hope you get that appt soon.
Amanda xxxx
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Post by Tigerlily Sat Jun 28, 2014 2:25 pm

Thanks, Diana - so sorry your letter was "overlooked". I had such a bad week last week I was near meltdown - you must have felt the same way when you heard about that.

Yes, I would certainly check with the sec (quite musical that, isn't it?!) on Monday to ensure that the fax has been received and that it is passed to FP urgently now.

Yes, keep me posted and we may even meet up at FP's !!

Love from Tigerlily xx

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