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Left to languish in limbo land!

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Stitch147

Stitch147

Well-Known Member
Relationship to Diabetes
MODY
Try saying that when you're drunk!
Just got home from my hospital appointment and I'm still no closer to answers or solutions.
I explained my history, how I got diagnosed, medications I've been on and every thing else.
He was impressed with my initial weight loss of 7 stones and the lowering of my HbA1c from 127 at diagnosis. He believes that I am more likely to be type 2 rather than MODY. My HbA1c is the same as it was in January, 53. Unfortunately he could not offer me any explanation as to why i still have high daily readings but a fairly good (his words) hba. I'm not anaemic. Because of being on gliclizide i have gained some weight back and really struggle to lose weight now. He is recommending that I go back on metformin to possibly help with weight loss and the other potential benefits from it or possibly trying Victoza. He also mentioned bariatric surgery, but I don't want to go that route!
He was impressed when I told him everything I have done to try and control my diabetes and said that I am doing everything that he would tell people to do and that its obvious I am definitely trying to help myself.
So, he is writing a letter to my gp and sending me a copy too with his recommendations. As soon as I get that I'll be making an appointment to see my gp and see what happens then.
Apart from not getting much further he was a very nice man.
 
Stitch147 said:
Try saying that when you're drunk!
Just got home from my hospital appointment and I'm still no closer to answers or solutions.
I explained my history, how I got diagnosed, medications I've been on and every thing else.
He was impressed with my initial weight loss of 7 stones and the lowering of my HbA1c from 127 at diagnosis. He believes that I am more likely to be type 2 rather than MODY. My HbA1c is the same as it was in January, 53. Unfortunately he could not offer me any explanation as to why i still have high daily readings but a fairly good (his words) hba. I'm not anaemic. Because of being on gliclizide i have gained some weight back and really struggle to lose weight now. He is recommending that I go back on metformin to possibly help with weight loss and the other potential benefits from it or possibly trying Victoza. He also mentioned bariatric surgery, but I don't want to go that route!
He was impressed when I told him everything I have done to try and control my diabetes and said that I am doing everything that he would tell people to do and that its obvious I am definitely trying to help myself.
So, he is writing a letter to my gp and sending me a copy too with his recommendations. As soon as I get that I'll be making an appointment to see my gp and see what happens then.
Apart from not getting much further he was a very nice man.
Click to expand...

You're obviously a bit of a diabetic conundrum Stitch! I'm glad he listened and you felt he was being responsive because that's half the battle.
Sorry there's been no definitive answers though but hopefully you feel a little bit better about things. It's a case of watch this space hun!
 
So did he not order any tests to see exactly what type you are? Glad you liked him though.
 
It's good to feel listened to although not quite the outcome you were hoping for. Frustrating to be back to gp again.
 
How frustrating for you. It's good he listened though.
TBH I was wondering the same as @Pumper_Sue
 
Pumper_Sue said:
So did he not order any tests to see exactly what type you are? Glad you liked him though.
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Ljc said:
How frustrating for you. It's good he listened though.
TBH I was wondering the same as @Pumper_Sue
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Nope! He said I'm definitely not type 1. I think the tests for MODY cost too much to do, so I guess they are just going to put me down as type 2 now.
 
Stitch147 said:
Nope! He said I'm definitely not type 1. I think the tests for MODY cost too much to do, so I guess they are just going to put me down as type 2 now.
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Cost😡 They will happily pour drugs down your throat that don't work, yet won't find out what the root cause of the problem really is.
 
Stitch147 said:
Nope! He said I'm definitely not type 1. I think the tests for MODY cost too much to do, so I guess they are just going to put me down as type 2 now.
Click to expand...
Perhaps write to him and ask if you can be tested for MODY and if not why not. You might as well make him work for his wages after all it's your health not his that needs addressing.
 
Sorry it was so frustrating Stitch and you're no nearer a solution.
Presumably the metformin didn't work last time and that is why you moved to Gliclizide?
 
Sorry to hear you did not get any answers or possible solutions. Though it is good you felt he listened to you.
 
Hi again Stitch. I'm pondering over your dilemma. Just wondering have you ever had a low reading? Of all the blood tests you do does your meter always read higher than it should? I can't see how your hba1c can be so low if you don't have some lows to bring it down. I know it sounds crazy but could your meter be wrong? Sorry if that's a stupid question.
 
Reading through your initial post Stitch it sounds as if you were given a long appointment so I'm glad the Consultant gave you as much time as you needed to discuss your health issues - however - notwithstanding this and apart from acknowledging your huge efforts to lose the weight, managing your diabetes & your diabetes history - it appears that the most important issue of MODY wasn't completely resolved and it is understandable that you walked away from your appointment with a sense of despondency.

I trust your GP will act in accordance with your Consultants advice - and ASAP. The wheels have been set in motion Stitch so i believe you must keep on top form from now on to ensure - demand even - that your GP arranges for you to have those all important bloods taken - you need the results of your bloods in order to move forward and get your life back.

I most certainly agree with all of the above comments in particularly from @Amigo - @pottersusan @Pumper_Sue re MODY testing and @Lindarose re your meter (Its worth trying a new one)
I wish you well Stitch and hope you get a positive response from your GP, you take care now. x
WL
 
I agree with pumper-sue ask for the test for mody if not getting ask why. Don't go quietly make a fuss and lots of noise. This is your health they are messing with not theirs.

Good luck
 
I'm so sorry that you're still in Limboland. Big hugs
 
Hi. I can't comments on the MODY aspect but note that weight gain with Gliclazide will be due to having too many carbs. You mention having lost weight which is great, but are you having a low-carb diet and hopefully not following the sometimes dreadful NHS diet advice? If you can continue to get the weight down it may make it easier to determine the correct diabetes diagnosis as insulin resistance will have faded. BTW Metformin doesn't really help you lose weight so I don't agree with the GP. It does help reduce insulin resistance and the liver's glucose output and also appetite a bit which is all a help but direct weight reduction - no?
 
Thanks for comments everyone.
@DaveB I eat reduced carbs rather than low carb,Dr doesn't have an issue with amount I have. So its not due to that. I lost weight originally eating a balanced diet following weight watchers. As I said I have struggled with the weight gain since starting gliclizide. I don't follow low carb as I struggle to stick to it.
 
AJLang said:
I'm so sorry that you're still in Limboland. Big hugs
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Thanks Amanda. We'll see what happens when I get the letter and go back to my GP.
 
Lindarose said:
Hi again Stitch. I'm pondering over your dilemma. Just wondering have you ever had a low reading? Of all the blood tests you do does your meter always read higher than it should? I can't see how your hba1c can be so low if you don't have some lows to bring it down. I know it sounds crazy but could your meter be wrong? Sorry if that's a stupid question.
Click to expand...
I do get readings occasionally as low as 6 -7, usually after exercise, I've got 3 meters and occasionally use the libre and they all give pretty much the same results. Even the libre predicted my HbA1c at 55 and its currently 53.
 
Greyhound Gal said:
Sorry it was so frustrating Stitch and you're no nearer a solution.
Presumably the metformin didn't work last time and that is why you moved to Gliclizide?
Click to expand...
Metformin had no effect hence being put on gliclizide, the consultant explained why it may not had worked and said it was worth trying it again.
 
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