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Letter from Endo

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Brigitte0
Amanda Lynne
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Letter from Endo Empty Letter from Endo

Post by Amanda Lynne Mon Jul 21, 2014 1:20 pm

I sent Endo email this morning asking if any results have come back from Growth Hormone/glucose suppression test and how long for CaSR results. Also if I can be seen before 11/9/14
It crossed in the post with a letter from her.
Which says she hasn't got any results, doesn't know when they come back and she's on holiday next week for two weeks.
She also noted my low thyroid result from previous test at another hospital but said as the one done at her hospital was "normal" she thinks I'm ok but she will test again, so I've got blood tests to do. Also she hasn't got any sooner appointments but she's sorry to hear about my symptoms.!!!!!!!!!
Well I really hope she has a wonderful holiday.
As for me I'm in limbo land and until I get growth hormone result there's no point even contacting FP as I haven't even got the whole story. Crying or Very sad 
A xxxx
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Post by Brigitte0 Mon Jul 21, 2014 2:25 pm

Well, although it's very noble of her to be sorry about your symptoms (!) it hasn't got you much further, except for the promise of more blood tests,  (whoop de doo for you!!) I'll join you in Limbo Land over the summer, so you're not alone. We all seem to spend a fair amount of time there, don't we?! Everything is in progress, (I keep getting told that!) so look forward to what's next, whenever it comes.

That's not really very helpful, I know, but I'm with you and I've got hugs!!

Take care and sending love and hugs for you
Brigitte xx
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Post by Amanda Lynne Mon Jul 21, 2014 4:16 pm

Hi Brigitte
Thank you so much for the hugs  Very Happy I deffo need them  I love you and sending hugs back to you too.
I wonder if it will disturb her holiday, thinking of my symptoms !!!!........ Hold back on that vodka martini waiter while I think about Mrs H's awful symptoms  affraid it's ok I'll have it now she'll survive !!!!!
The only good news is I've had a letter back from other hospital and for a small fee of £10 they will send me all my historical blood test results, this is brilliant as it may show if I've had any high calcium readings in my past and either help or hinder my proving I don't have FHH. Either way at least it will help.
Sending you love n hugs from lalalala limbo land  Laughing 
Amanda xxxx
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Post by Brigitte0 Mon Jul 21, 2014 4:33 pm

Oh Amanda, your sense of humour will get you through all this!! I'm with you in lalalala-limbo-land hoping there's a waiter to bring us a drink too!

It's good you can get all your results: it's something I've thought about but everything is such a bloomin' effort at the moment and I'm on this amazing fast track route to surgery... apparently. I hate to think what the normal route is like.

Love and hugs
Brigitte xx
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Post by Amanda Lynne Mon Jul 21, 2014 5:16 pm

Yes it's strange this sitting on their fast track whilst, tortoises, snails, sloths and all manner of slow things speed past us. I don't seem to be on the track to anything, I'm sure my Endo thinks I'm absolutely fine................especially whilst she's sunning herself on her hols and one of the other Endos definitely won't be filling in for her she will be in her "little place in South Africa she has" I know this because my daughter used to horse ride with her daughter and the married name is De Beers !!!!!
Strangely she seems not to want to deal with my case.
Sorry if I'm being a crabby old bat but my heads sore from banging it against a brick wall.... Wink 
Yes it would be nice if there was such a waiter with a small snifter in lala land it would break the monotony drunken Hic.
Lots of love Amanda xxxx


Last edited by Amanda Lynne on Mon Jul 21, 2014 5:19 pm; edited 1 time in total (Reason for editing : Old braineo foggyeo making me misspell words. I will write lines.. I must try harder. X)
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Post by Brigitte0 Mon Jul 21, 2014 5:33 pm

Have you thought about being a comedienne in your spare time? Maybe not stand up, but sit down due to braineo foggyeo  Very Happy 

Lots of love, hugs and hics
Brigitte xx
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Post by Amanda Lynne Mon Jul 21, 2014 5:43 pm

Hahaha I'll keep that in mind, yes I can't do stand up my feet hurt Laughing 
Love Amanda xxxx
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Post by Little Audrey Mon Jul 21, 2014 6:04 pm

Oh, my goodness, Amanda, I'm so sorry to hear of this!  Crying or Very sad  Yes, I'm sure our doctors suffer greatly worrying about us and how awful we feel. I'm sure it totally ruins their vacations! I just told my sister this morning that I wish to heck every one of my doctors could feel exactly what I'm feeling! I'm not a vengeful person, just tired of suffering and tired of nobody taking me seriously. That would be one way to get them to open their eyes and try a bit harder to help me!!

Yes, you should definitely get copies of all of your past labs. I have mine since 2006. At the time I requested them, my doctor didn't have any earlier results. Over the past close to 4 years, I've been over and over those papers! I'm surprised they aren't totally worn out!

And I do think Amanda would make a great comedienne! Thanks for the laughs, Amanda! You are helping us all through our health ordeals!

Onward!!!

Dr. Aud

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Post by Amanda Lynne Mon Jul 21, 2014 7:44 pm

Awwwwww thanks it's the only way I know of getting through this.
Love Amanda xxxx
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Post by Kathi209 Tue Jul 22, 2014 2:26 am

Hang in there Amanda, it is annoying when you have blood test to do or waiting on tests and doc goes on a vacation. I am not sure what the 10 is on the price of past blood tests results but if its only 10 dollars it could be worth it. If you have any elevated 24 hour urine test results from the past it may be very useful. 

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Post by Amanda Lynne Tue Jul 22, 2014 6:26 am

Hi Kathi
Yes £10 is a very small amount if it proves I haven't had elevated calcium in the past.
I know we all need a holiday but what is getting me down is the fact that I've been under this Endos dept since the beginning of Dec 2013 and apart of blood tests nothing has progressed except the Endo being fixed on me having FHH. Mad 
Amanda xxxx
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Post by Tigerlily Tue Jul 22, 2014 9:55 am

Hi Amada

So sorry to hear you are having to hang about waiting for people again. Many hugs and hics in commiseration.

But do go for the £10 package re your notes and blood test results. That is a bargain. I've spent more driving backwards and forwards to the GP's to collect copies etc. And while your endo is away you will be able to study the results and see what patterns emerge (in between writing your sit-down comedy scripts ..)!

Love from Tigerlily xxxx

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Post by Amanda Lynne Tue Jul 22, 2014 10:11 am

Hi Tigerlily
I've just done it, I consider it a very small amount for info, I would be willing to pay much more if it got me some peace of mind.
It will be interesting reading.........
I will practice my humour on the kids..... They think I'm very funny !!! But not in a humorous way! Shocked  Rolling Eyes  Embarassed 
Love Amanda xxxx
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Post by Admin Tue Jul 22, 2014 12:36 pm

Amanda Lynne wrote:
She also noted my low thyroid result from previous test at another hospital but said as the one done at her hospital was "normal" she thinks I'm ok but she will test again, so I've got blood tests to do.

Hi Amanda

I hope that you get a copy of your Thyroid results, because "Normal" with Thyroid can be meaningless unless you see the results for yourself.

Edwin
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Post by Amanda Lynne Tue Jul 22, 2014 3:21 pm

Hi Edwin
Hope you are keeping well. Yes I have got the results I've posted them on a thread before I'll look them up. I know they were in normal range but a bit suspicious. I've got another load of bloods to do.
Full blood count
U & E
LFT
Bone
TFT (TSH,FT4)
PTH
25 OH ?
Vit d
I know what they are all for except the 25OH, I'll google it. As she won't be back for 2 wks I won't get any results. I rang her secretary re glucose supression for pit problems but she said they aren't back yet so I guess I'll just have to wait until Endo is back form her hols.
Hope it gives her a renewed sense of healing and gets on and does something.
Ok found results.
10/3/14
TSH 2.69 range 0.34-5.6
FT4 7.20 range 7.5-21.1 so that's low.
13/3/14
TSH 2.29
FT4 8.60
25/3/14
Free T4 11.6 range 9-22.7
TSH 4.01 range0.35-5.5
Free T3 3.5 range 3.5-6,5
She says these are all perfectly fine.I have no knowledge of what's right so I don't know and if they show something how do I convince her she's wrong !!!!
Confused Amanda xxxx
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Post by Admin Tue Jul 22, 2014 5:22 pm

Hi Amanda

Your low FT3 is the most significant, but getting this accepted by docs who are wedded to in-range TSH being the dog's bollxxks is the real challenge.

Most likely, your low FT3 and lowish FT4 indicate insufficient Thyroid hormone levels.  The relatively high TSH also indicates this (relatively high in the context of what actually works for most people and not a global reference range).
The TSH range is very wide, but an individual's range is likely to be very much narrower and usually at the lower part of the reference range.

If you can get your FT3 and FT4 up to at least the middle of their reference ranges (this is based on patient feedback about when they feel the closest to normal), this should reveal your optimum TSH level.

Edwin


Last edited by Admin on Tue Jul 22, 2014 8:33 pm; edited 1 time in total
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Post by Amanda Lynne Tue Jul 22, 2014 6:40 pm

Thanks Edwin
I'm hoping the next lot of tests show something up. I'll get them done next wk just in time for Endos return.
Amanda xxxx
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