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I got an even bigger one!

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I got an even bigger one!

Post by Tigerlily on Tue Jun 24, 2014 8:01 pm

Hi Everyone

Just posting quickly on the trip to Addenbrookes Ultrasound department today. Update: I stamped my foot in the Thyroid Clinic at the end of May and demanded an US, after I had showed them the letter from the local Rheumatologist diagnosing normo-calcemic primary HPT with inappropriately elevated PTH. The appointment came through within two weeks and we've just got back today.

It took Dr B about 2 minutes to find an adenoma nearly 2cm long x 6mm x 4mm - ye gods - it's torpedo-shaped, and the sonographer at the local hospital must only have seen it end-on, as he had said 4mm x 4.3mm only.

How long do they take to grow that size - not huge, I know, but bigger than I had thought. Simon eventually had one removed that was 2 cm max, as I recall, and he told me that my Ca and PTH levels were very similar to his - i.e. not hugely elevated enough to get an endo excited, but big enough to be the cause of irregular hormone secretion rates.

Have to dash now, but back soon.

Love from Torpedo-Tiger xxx (with the emphasis on the Tiger, as far as dreams of retribution are concerned!!)   cat  cat

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Re: I got an even bigger one!

Post by Lucycatnaps on Tue Jun 24, 2014 8:47 pm

Ohh Wow Tigerlily,
That sounds pretty big to me considering they start off as grain of rice size.  It must be  a huge relief that they located it again and in the same position, it should make removal so much easier.
Sue x
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Re: I got an even bigger one!

Post by Amanda Lynne on Tue Jun 24, 2014 9:11 pm

Hi Tigerlily
Sounds like you've got a watermelon in there.  affraid 
Brilliant news that it's been found in the same place. Did they look at the other glands, will you insist that they check all 4 during op ?
I can imagine you are taking notes on what you will be writing to M the K, I seem to remember him dismissing you as not having PTH disease !!!!!
I'd ask for the adenoma to kept and take it in a matchbox put it on his desk.
Well done you, it won't be long before you are operated on and recovering from this awful disease.
Love n hugs Amanda xxxx
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Re: I got an even bigger one!

Post by lozza on Tue Jun 24, 2014 9:26 pm

Hi Tigerlily,
 Wow- 2cm ,amazing how different scans shows different angles of scan, as you say previous scan must have shown end on . I hope Addenbrookes take notice of this, but you also have choices about where you want to be treated.

Did you find out whether it is parathyroid upper or lower ? mine is in lower area. But they are not sure if they have located all of mine - 
Mine is also torpedo shape.  

It also proves you can't just go on Blood tests for this disease, as it has no relationship to size of problem.

I should think you need a glass of wine with info you have had Today. I think addenbrookes Endo will be very surprised when you attend clinic.

Tigerlily, you have been right all along, endo need to listen.

best wishes

lets have some cats cat  cat  cat  cat 

Lozza

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Re: I got an even bigger one!

Post by Brigitte0 on Tue Jun 24, 2014 9:41 pm

Yay Tigerlily  Smile How gratifying, after all you've been through! Have you actually been referred to the surgeon yet, or does someone have to press the 'Go' switch somewhere? 

More cats, since they're obviously good luck symbols!  cat  cat  cat  cat  cat  cat 

Love and hugs 
Brigitte xx
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Re: I got an even bigger one!

Post by Tigerlily on Wed Jun 25, 2014 11:59 am

Hi Ladies

I'm still a bit shocked at the size of it, but truly impressed with the Addenbrookes ultrasound equipment and the sonographer. I was only in the room for about 5 minutes in total, and most of that was spent with me twittering on about knowing I had one, etc.

I'll be seeing my GP on Friday to get him to write the letter to refer me back into the NHS system with Fausto Palazzo at the Hammersmith, so not long to go now, perhaps 8 weeks until I'm seen by the specialist team there.

Another issue has cropped up though that I've posted on in another new topic - so see you over there!

Thanks for all the cats and good wishes - Love from Tigerlily  cat  cat  xxxx

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Re: I got an even bigger one!

Post by Kathi209 on Wed Jun 25, 2014 8:49 pm

Good news Tigerlily, Seems to be moving faster for you. There seems to some talk on facebook about checking all 4 glands, some say if it has been located just go in there and get it, so as not to disturb the thyroid or do any damage to the other para's. Some disagree and feel it is better to check all glands. I guess in depends if the can check your pth right in the O.R. I am still confused about that.       Wishing you the best always  Kathi

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Re: I got an even bigger one!

Post by Tigerlily on Wed Jun 25, 2014 10:55 pm

Thanks so much everyone!

Had a dizzy day so off to bed now - back tomorrow to answer in detail.

Love and Cats from Tigerlily xxxx

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Re: I got an even bigger one!

Post by Little Audrey on Thu Jun 26, 2014 4:01 am

Wow, more good news! YAY for Tigerlily!! My tumors were not extremely large. One was 1cm the other was just under 1cm. All I know is I'm glad to have them out of there! So happy everything is finally moving along for you! Won't be long now!

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Re: I got an even bigger one!

Post by Tigerlily on Fri Jun 27, 2014 8:25 am

Thanks, Audrey!

Must have been growing for years. Simon had a 2cm one removed eventually, as I recall.

I told them I was ill, as Spike Milligan famously said!

Love and Cats from Tigerlily xx

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