Author Topic: Not what I wanted for Christmas  (Read 1004 times)

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Offline Quantum Learning

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Not what I wanted for Christmas
« on: 22 December 2016, 11:46:58 PM »
Had a letter today with the results of my latest D eye test and I have maculopathy. They're going to send me an appt for further investigations. 2 years ago they said I had background changes that were a bit worrying because of where they were in my eye so I had 2 x 6 monthly checks and at the last one was told they had gone completely, now 12 months later I've got this maculopathy? I can't help but think they got it wrong a year ago. Not what I was wanting for Christmas I have to say  :(
Type 2 dx Nov 2012 with fasting BG 14%/129.5
HbA1c Jan 2013 79/9.3%
April 2013 50/6.7%
July 2013 39/5.7%
Oct 2013 39/5.7% Chol 5.9
July 2014 45/6.3% Chol 5.5
Aug 2015 61/7.7% Chol 5.9
May 2016 84/9.7% Chol 6.9
Oct 2016 53/7%  Chol 6.3
Dec 2016 41/5.9% Chol 6.0
June 2017 51/6.8% Chol 6.1
Oct 2017 52/6.9% Chol
Metformin SR 2000mg, Candesarten Cilexetil 4mg Omeprazole 20mg, Fexofenadine 180mg Co-Codamol 30/500g when needed. Amitriptyline 20mg
Toujeo/NovoRapid, Allergic to Levemir.

Offline nytquill17

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Re: Not what I wanted for Christmas
« Reply #1 on: 23 December 2016, 01:10:15 AM »
I'm so sorry to hear that Q! Hopefully it's this test that's gotten mixed up and not the one before... Small comfort I know but at least if it IS something, they've caught it very early and there's lots that can be done. It may even settle back out again on its own now that you've got things under control again with insulin. Happened to me!

Lots of warm thoughts from me. Hang in there.
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline sedge

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Re: Not what I wanted for Christmas
« Reply #2 on: 23 December 2016, 02:02:46 AM »
There's a lot more they can do for it nowadays too - apparently this new jab Eylea is better than Lucentis was or is, if it's that type of it which responds to the jabs.

Hope you get the apt through to see the Opthalmologist asap so treatment can commence - and that it can be sorted pdq.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline Pattidevans

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Re: Not what I wanted for Christmas
« Reply #3 on: 23 December 2016, 11:03:22 AM »
So sorry to hear that Q.  Definitely not a nice Christmas present.  I hope you can get treatment quickly so it gets sorted whilst it's still not bad.


Just to clarify... were the background changes they referred to actually Diabetic Retinopathy rather than maculopathy and aren't these two conditions quite different?
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Quantum Learning

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Re: Not what I wanted for Christmas
« Reply #4 on: 23 December 2016, 11:44:09 AM »
I am a bit confused TBH, I had small background changes on Dx (retinopathy) which I made slightly worse by dropping my A1c too fast. The next screening said they were still there but back to small and the next time they said they had gone. Then they said they were back but in a bad place (middle of the retina so wanted to keep an eye on them with 6 monthly checks. A year later they had completely gone and put me back on annual checks. so 12 months later they're now saying I have Diabetic Maculopathy and need further tests and to see a specialist. Something just doesn't ring right and I will be trying to get them to explain when I do see them, thanks for your good wishes, trying to put it out of my mind till I get the appt.
Type 2 dx Nov 2012 with fasting BG 14%/129.5
HbA1c Jan 2013 79/9.3%
April 2013 50/6.7%
July 2013 39/5.7%
Oct 2013 39/5.7% Chol 5.9
July 2014 45/6.3% Chol 5.5
Aug 2015 61/7.7% Chol 5.9
May 2016 84/9.7% Chol 6.9
Oct 2016 53/7%  Chol 6.3
Dec 2016 41/5.9% Chol 6.0
June 2017 51/6.8% Chol 6.1
Oct 2017 52/6.9% Chol
Metformin SR 2000mg, Candesarten Cilexetil 4mg Omeprazole 20mg, Fexofenadine 180mg Co-Codamol 30/500g when needed. Amitriptyline 20mg
Toujeo/NovoRapid, Allergic to Levemir.

Offline Liam

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Re: Not what I wanted for Christmas
« Reply #5 on: 23 December 2016, 11:53:35 AM »
Well retinopathy and Maculopathy are different. Both can be caused by diabetes but are the same thing. I don't know a lot about Maculopathy so can't really advise.

Edit: I've done a bit of reading and see that diabetic macular oedema (the most common type of Maculopathy)  starts with retinopathy.
DX Type I 1994.    Novorapid Animas Vibe pump
HbA1c 3/10 10.2%, 7/10 8.1%, 12/10 7.5%.
2/11 7.8%, 8/11 8.6% 9/11 8.3%.
3/12 62 (7.8%). 10/12 67 (8.3%)
4/13 63 (7.9%) 6/13 59 (7.5%)
1/14 71 (8.6%) 7/14 59 (7.5%) 11/14 (6.7%)
3/15 56 (7.3%) 12/15 49 (6.6%)
Ramipril: 10mg Quetiapine: 550mg Metformin: 2000mg

Offline Quantum Learning

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Re: Not what I wanted for Christmas
« Reply #6 on: 23 December 2016, 12:22:26 PM »
Thanks Liam, the bit I don't get is they keep telling me the retinopathy has gone so how did it cause the maculopathy? Methinks one or more of these past 'results' were wrong. Bit like when I phoned for my latest a1c results to be told oh yes it's still 39 when in fact it had gone up to 45. This was (unknown to me) my warning that something had gone horribly wrong but I thought it was still 39 so no problems. A year later it's up to 61 but again no-one told me (don't know why I didn't get this result, other than it being my annus horribilus) then the following year it reached 84 at which point I noticed and was horrified. I still feel bitter that they gave me the wrong number when it first went up and that they wouldn't give me the test strips which would also given me an early warning. The fact that they didn't think it was a problem till it reached 84 is also a worry. Just had my latest a1c so hoping for lower than the last one of 53. Now that would be a nice Xmas present.
Type 2 dx Nov 2012 with fasting BG 14%/129.5
HbA1c Jan 2013 79/9.3%
April 2013 50/6.7%
July 2013 39/5.7%
Oct 2013 39/5.7% Chol 5.9
July 2014 45/6.3% Chol 5.5
Aug 2015 61/7.7% Chol 5.9
May 2016 84/9.7% Chol 6.9
Oct 2016 53/7%  Chol 6.3
Dec 2016 41/5.9% Chol 6.0
June 2017 51/6.8% Chol 6.1
Oct 2017 52/6.9% Chol
Metformin SR 2000mg, Candesarten Cilexetil 4mg Omeprazole 20mg, Fexofenadine 180mg Co-Codamol 30/500g when needed. Amitriptyline 20mg
Toujeo/NovoRapid, Allergic to Levemir.

Offline Liam

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Re: Not what I wanted for Christmas
« Reply #7 on: 23 December 2016, 12:46:34 PM »
Well that is only the most common type of Maculopathy. There is a chance it isn't diabetes related. They little bit of reading I've done suggests they normally want to do other tests (not just looking at the eye) to make sure you do in fact have Maculopathy. My experience of retinopathy is it can come on fast, I mean the small bleed could happen the day after you see the eye doctor and you could have it months before seeing them again. Then again it might have been missed too or found and not properly reported / told to you.
DX Type I 1994.    Novorapid Animas Vibe pump
HbA1c 3/10 10.2%, 7/10 8.1%, 12/10 7.5%.
2/11 7.8%, 8/11 8.6% 9/11 8.3%.
3/12 62 (7.8%). 10/12 67 (8.3%)
4/13 63 (7.9%) 6/13 59 (7.5%)
1/14 71 (8.6%) 7/14 59 (7.5%) 11/14 (6.7%)
3/15 56 (7.3%) 12/15 49 (6.6%)
Ramipril: 10mg Quetiapine: 550mg Metformin: 2000mg

Offline sedge

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Re: Not what I wanted for Christmas
« Reply #8 on: 23 December 2016, 02:21:13 PM »
I'd be kicking up such a stink about not being told my D results Quantum, what other benchmark does a T2 have?

Did you not ASK them for them?
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline Pattidevans

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Re: Not what I wanted for Christmas
« Reply #9 on: 23 December 2016, 02:44:05 PM »
I think you might find that Q was distracted by many other (non diabetic) problems during the time she didn't get them.  It's so easy (specially when you have been reassured that everything is the same as usual, even though it's not, but no one has thought to raise a red flag or inform you) to forget about your own problems when everyone around you needs sorting out.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Quantum Learning

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Re: Not what I wanted for Christmas
« Reply #10 on: 23 December 2016, 09:44:26 PM »
I think you might find that Q was distracted by many other (non diabetic) problems during the time she didn't get them.  It's so easy (specially when you have been reassured that everything is the same as usual, even though it's not, but no one has thought to raise a red flag or inform you) to forget about your own problems when everyone around you needs sorting out.

You are so right but I am aware I dropped the ball regarding my D during that awful year/18 months. I think it was partly because no one medical noticed so didn't inform me but also I was sticking rigidly to my VLCHF diet so assumed everything would continue as usual and because I could no longer afford to fund the strips myself I didn't see the evidence I might've at home.
Type 2 dx Nov 2012 with fasting BG 14%/129.5
HbA1c Jan 2013 79/9.3%
April 2013 50/6.7%
July 2013 39/5.7%
Oct 2013 39/5.7% Chol 5.9
July 2014 45/6.3% Chol 5.5
Aug 2015 61/7.7% Chol 5.9
May 2016 84/9.7% Chol 6.9
Oct 2016 53/7%  Chol 6.3
Dec 2016 41/5.9% Chol 6.0
June 2017 51/6.8% Chol 6.1
Oct 2017 52/6.9% Chol
Metformin SR 2000mg, Candesarten Cilexetil 4mg Omeprazole 20mg, Fexofenadine 180mg Co-Codamol 30/500g when needed. Amitriptyline 20mg
Toujeo/NovoRapid, Allergic to Levemir.

Offline Quantum Learning

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Re: Not what I wanted for Christmas
« Reply #11 on: 23 December 2016, 10:03:30 PM »
I'd be kicking up such a stink about not being told my D results Quantum, what other benchmark does a T2 have?

Did you not ASK them for them?

I did drop the ball on my D at that time but had a lot on my plate, see the link below for explanation.

http://diabetes-support.org.uk/diabetes_forum/index.php/topic,6716.msg98630.html#msg9863

(You'll need to go down to the bottom).
Type 2 dx Nov 2012 with fasting BG 14%/129.5
HbA1c Jan 2013 79/9.3%
April 2013 50/6.7%
July 2013 39/5.7%
Oct 2013 39/5.7% Chol 5.9
July 2014 45/6.3% Chol 5.5
Aug 2015 61/7.7% Chol 5.9
May 2016 84/9.7% Chol 6.9
Oct 2016 53/7%  Chol 6.3
Dec 2016 41/5.9% Chol 6.0
June 2017 51/6.8% Chol 6.1
Oct 2017 52/6.9% Chol
Metformin SR 2000mg, Candesarten Cilexetil 4mg Omeprazole 20mg, Fexofenadine 180mg Co-Codamol 30/500g when needed. Amitriptyline 20mg
Toujeo/NovoRapid, Allergic to Levemir.

Offline sedge

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Re: Not what I wanted for Christmas
« Reply #12 on: 23 December 2016, 10:59:03 PM »
Yes - but you aren't in the same state now Q - so now's the time to bite the bullet with your surgery - knowing that it MAY have damaged you, don't you think?
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline Quantum Learning

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Re: Not what I wanted for Christmas
« Reply #13 on: 24 December 2016, 10:27:00 AM »
I'm waiting for the appt for further tests, hopefully it won't be long.
Type 2 dx Nov 2012 with fasting BG 14%/129.5
HbA1c Jan 2013 79/9.3%
April 2013 50/6.7%
July 2013 39/5.7%
Oct 2013 39/5.7% Chol 5.9
July 2014 45/6.3% Chol 5.5
Aug 2015 61/7.7% Chol 5.9
May 2016 84/9.7% Chol 6.9
Oct 2016 53/7%  Chol 6.3
Dec 2016 41/5.9% Chol 6.0
June 2017 51/6.8% Chol 6.1
Oct 2017 52/6.9% Chol
Metformin SR 2000mg, Candesarten Cilexetil 4mg Omeprazole 20mg, Fexofenadine 180mg Co-Codamol 30/500g when needed. Amitriptyline 20mg
Toujeo/NovoRapid, Allergic to Levemir.

Offline Venomous

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Re: Not what I wanted for Christmas
« Reply #14 on: 25 December 2016, 10:23:23 PM »
Oh no! I don't know much about this but it can't be great news. :(  I hope that it can be turned around or successfully treated. Do let us know what happens x
T2 and PCOS. Just had large serous adenofibroma removed with ovary and fallopian tube. Bp is now normal!

Novorapid, levemir, trulicity, metformin.