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MRI at Addenbrookes

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Amanda Lynne
Tigerlily
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Post by Tigerlily Sat Jul 05, 2014 8:20 pm

Hi Everyone

Sorry not to have posted sooner, but Addenbrookes (not mentioning any names) did agree to a focussed pituitary MRI "to allay your anxiety" and then if nothing shows there, they will refer me to a neurologist.

I suppose it's what I wanted/need so will run with that.

Too tired for more at the mo but I will return !

Love to all from Tigerlily xx

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Post by Amanda Lynne Sat Jul 05, 2014 10:26 pm

Tigerlily
Glad you got the MRI and possible appointment with Neurologist.
Speak soon.
Amanda xxxx
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Post by Lucycatnaps Sat Jul 05, 2014 10:42 pm

Hi Tigerlily,
That sounds like it was a positive outcome albeit I suspect you had to drag it out of them.  I hope you do not have to wait too long for your scan and that it will provide some much needed answers for you one way or another.  
Sue x
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Post by Lucycatnaps Sat Jul 05, 2014 10:43 pm

Hi Tigerlily,
That sounds like it was a positive outcome albeit I suspect you had to drag it out of them.  I hope you do not have to wait too long for your scan and that it will provide some much needed answers for you one way or another.  
Sue x
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Post by Brigitte0 Sun Jul 06, 2014 10:02 am

Yes, Tigerlily, that sounds very positive and probably the best you could have expected! Hope you get the appointment sooner rather than later and also hope this has boosted your spirits somewhat! 

Take care and love and hugs 
Brigitte xx
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Post by Little Audrey Sun Jul 06, 2014 11:55 am

Great news, Tigerlily! It is always nice when the medical professionals cave and agree to do as we wish. Don't know why it's so hard to get them to that point, but it is a joyous occasion when they do! One more win for Tigerlily!!!  cheers 

Audrey

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Post by NancyMi Sun Jul 06, 2014 2:02 pm

Tigerlily,
     So glad that they will be doing this test.  Hopefully, it will be completely negative.  
Isn't it something how we have to press them for tests to be done.   Neutral 

xxx,  Nancy

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Post by Guest Sun Jul 06, 2014 2:06 pm

Hi Tigerlily,

SO glad you have persuaded them to  give you a MRI, its a shame that you had to fight so hard to get it. 
Well done that's good news, its a good feeling when you know, you are actually getting some where.  Very Happy 

Take care

Diana x

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Post by Tigerlily Sun Jul 06, 2014 2:09 pm

Hi Amanda, Sue, Brigitte, Audrey, Nancy & Diana

Thanks so much for your good wishes, and yes, I hope there's nothing there as well, but the symptoms do seem to be looking in that direction. If that is the case, then I think the parathyroid adenoma might be a symptom rather than the cause.

My GP has referred me to FP at the Hammersmith so I hope that I'll hear something from him soon - "Come on down!" would be good!
I'd still like the HPT adenoma removed but hope he will be able to look at the bigger picture and advise accordingly.

Will keep you posted.

Love from Tigerlily xx

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Post by Brigitte0 Sun Jul 06, 2014 4:45 pm

Tigerlily, you do make me laugh. "Come on down" would be great!!

I am full of admiration for how you have never given up and done so much research and proved that you were right. If my brain was in tune I could probably use some big words or phrases, like "advise accordingly". ()Wow, I'm impressed! I can hardly string two words together and need lots of time with spell check and thesaurus Wink to be able to say anything at all at the moment!

Have some cats  cat  cat  cat  cat  cat  cat 

Love and hugs
Brigitte xx
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Post by Tigerlily Sun Jul 06, 2014 5:38 pm

Thanks for the cats, Brigitte! Cats and good hugs really do help a lot!

I must have looked quite mad to the Dr at Addenbookes - I was keeping eye contact with her all the time because I was concentrating on trying to get the words out - and in the right order - and on verbally slapping her on the wrists at the same time. It was a delicate balancing act between trying to be reasonable and trying not to sound totally potty!

Peter was with me and he said that he thinks she got the message that a serious error had been made. I asked for a copy of the US report and in the "Clinical History" section it reads:

"Secondary/?tertiary hyperparathyroidism. ?persistent raised PTH after D replacement."

And only as an after-thought does it mention "? parathyroid adenoma".

So that proves that they were treating me for secondary/tertiary HPT because they were unable to read that it was primary from the blood test results (and neither could MdaK..)

For the sake of completeness here: the rest of the US report reads:

The study confirmed a 17mm x 6mm x 4mm elongated hypoechoic structure posterior to the lower pole of the left lobe of the thyroid, consistent with parathyroid enlargement. No other parathyroid enlargement was demonstrated. The thyroid gland is of normal dimension.

CONCLUSION: Left inferior parathyroid enlargement.

The mental fog symptoms are the worst thing for me, too, Brigitte. It takes a lot of effort to think things through or express myself, so you are not alone. I also have to sleep a lot afterwards!!

Hope you'll be feeling better yourself soon - and here are some "hearty" cats back to you:  cat  I love you  cat  I love you  I love you.

With love and hugs from Tigerlily xxxx

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Post by NancyMi Tue Jul 08, 2014 2:06 am

Tigerlily,
     A symptom rather than a cause?   Are you thinking MEN? 

You string your thoughts and words together so well and especially so considering you are working under the affects of this adenoma.    

xxx,  Nancy

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Post by Tigerlily Tue Jul 08, 2014 7:13 pm

Hi Nancy - I was hoping not to have to think about MEN, but thanks for your input here. It had crossed my mind.

I'm having a rest from it all for a day or so hoping that in the meantime I will get my appointment with FP at the Hammersmith and all will be revealed somehow.

Bless you about the words - I'm totally dependent on spellchecker!!

Hope you are feeling a lot better in yourself after intravenous Paris!!

Love from Tigerlily xxxx

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Post by NancyMi Wed Jul 09, 2014 3:06 am

It sounds like primary to me since an adenoma was identified.  I think you have had to deal with PTD a long while and that in itself has given you more symptoms.

I know what you mean about MEN.  I am also hoping I don't fit into the category.  I had painful ovulation starting at age 19 and continuing all the way through until ovulation ceased.   Thank God for the pill, pregnancy and br feeding which all temp stopped ovulation and the pain that went with it. 

I did fairly well in Paris.  I don't think I could have done it without the surgery.  One day we walked 5 miles according to the bracelet my daughter was wearing.  

I went back to work and for now am not doing too bad.  One day though I felt the "sick" feeling coming back and that was frightening.  

Isn't it disgusting when they can't accurately interpret test results.   

I don't blame you for taking a break from this.   I do hope the FP at Hammersmith focuses on the US results and then sets you up for surgery soon!!  cat  I love you  cat 

xxx,  Nancy

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Post by Tigerlily Wed Jul 09, 2014 9:34 am

Thanks, Nancy - so glad you had a great time in Paris - let's hope the sick feeling is just a passing phase.

Yes, with an adenoma seen on US, I'm hoping to be able to pin everything on that. My letters have all gone to FP at the Hammersmith 10 days ago, but the appointments system doesn't have me on their radar yet, so either my documentation is "in limbo" somewhere or someone is on holiday and it hasn't been dealt with.

I'll contact FP's secretary (again) today to ask where I am in the system. I've come to the conclusion that I'd rather have the adenoma taken out and then see if it helps with the symptoms.

And thanks for the cats - always welcome!

Love from Tigerlily   xx cat xx

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