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New diabetic and my story

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tony1990

New Member
Relationship to Diabetes
MODY
Hello guys and girls I'm 32 and have diabeaties in the family I have avoided subject for years thinking I will be fine then a month ago my eyesight got blurry then over 10 days it got severely bad so started showing symptoms so tested my sugars on my mums machine come back in 23 area doctors next day after having had no sugary stuff because suspicions they were 28 had to do wee test ketone was at 1 so was told go to a and e after 5 days in there I was told its modi? A hereditary form and I am being treated as type 1 I finally am working out on getting my blood sugars average 7 area with odd 10 appear but it's the start of a long journey of learning and controlling it am trying my hardest to make the changes for the better I stay well away from sugar after the scare of my eye sight
 
Hi and welcome to the forum and the website. I was diagnosed type 2 four months ago with no previous experience of Diabetes so am on a steep learning curve, sorry I have no helpful advice or suggestions to offer but feel sure there will be someone along who has the experience and knowledge to assist you. Didn't want to read and pass before saying Hi
 
Hi there, sorry you have been so unwell. Just a quick question, do you have family members with mody and is this how your type has been determined? I only ask as the genetic testing for MODY takes several months as I’ve just had it done myself, another guy I know of it has taken even longer and it took me 18 months to get the referral in the first place! So you have been very lucky.
 
By the way your glucose readings are great for a newly diagnosed !
 
Hello @tony1990 and welcome to these forums. Sorry to hear of your diagnosis, it must have been scary having blurry vision but at least you have a diagnosis and a plan in place to reduce your BGs to get back into a normal range and avoid any other health issues. I always look on the bright side of having diabetes in that having regular checks you at least have regular health check ups. I found that once my blood sugars got back into a normal range that my eyesight actually improved so it really does make a difference.

You say that you are being treated as a T1, so I assume you have been started on insulin which will definitely control your blood sugars. I presume you will also be eligible for a CGM device like the Libre as well?

Doubtless you will have loads of information thrown at you from your healthcare team, but just keep asking questions. There are loads of knowledgeable people on these forums who can offer advice and share their experiences too.
 
Hi and welcome @tony1990 glad you've found us

Sorry to hear about your diagnosis and your hospital stay but well done on knowing the symptoms and checking with your Mums meter

This information is on Mody from Diabetes UK,

Maturity onset diabetes of the young (MODY)

MODY is a rare form of diabetes which is different from both type 1 and type 2 diabetes, and runs strongly in families. MODY is caused by a mutation (or change) in a single gene. If a parent has this gene mutation, any child they have, has a 50% chance of inheriting it from them. If a child does...
www.diabetes.org.uk www.diabetes.org.uk

It is a rare form of diabetes so good you have had an on the ball doctor looking at your situation. Have you had further tests/genetic testing done to confirm the diagnosis?
I hope things are improving for you and your eyesight is settling down. Blurry eyesight is a common symptom of diabetes around the time of diagnosis, the lenses in the eyes swell and change shape due to the high concentration of glucose in the body and the ability to focus changes. Hopefully as your levels come down into more normal range - its best to reduce them slowly as its kinder on the blood vessels etc - then you'll notice an improvement in your sight.
 
Welcome to the forum @tony1990

And to our select and fastidiously chosen club. We don’t just let anyone in you know!

Find yourself a seat in MODY Corner and some of our other MODY members like the lovely @Stitch147 will be along shortly.

As you grow in confidence with your insulin dosing and blood glucose management, hopefully you’ll lose the fear of any foods. While sugary things can be tricky to get right (and after a while the effort involved may mean you lose the desire for them) with modern insulins there really isn’t anything you have to completely avoid - no matter how sugary or sickly. It’s just that some things are much harder and less predictable than others… so best to only have them once in a blue moon to avoid the frustration of chasing your mistakes with follow-up corrections 🙂
 
Thankyou for your reply it is a massive learning scale I'm finding it quite scary at the minute after my eye sight going my mother type 1 is having amputation the last month has been the most terrifying one of my life
 
Also mody diagnosis the specialist said that and he's going to treat me as type 1 my eyesight is perfect again thank god as that was frightening still off sugar but I'm coping really well I'm proud of myself for the changes and managing it it's a big step in adult life I never thought would affect me
 
Oh gosh! So sorry to hear that your Mam needs an amputation. I think the risks of complications are much less these days because we have much better technology and insulins to manage our diabetes than I imagine your Mam did when she was first diagnosed, so there is no reason to suppose that you will suffer similar problems providing you don't deliberately neglect your diabetes. Have you been given Libre sensors. Which insulins are you using?
Souds like you are doing incredibly well for less than a month from diagnosis.
 
rebrascora said:
Oh gosh! So sorry to hear that your Mam needs an amputation. I think the risks of complications are much less these days because we have much better technology and insulins to manage our diabetes than I imagine your Mam did when she was first diagnosed, so there is no reason to suppose that you will suffer similar problems providing you don't deliberately neglect your diabetes. Have you been given Libre sensors. Which insulins are you using?
Souds like you are doing incredibly well for less than a month from diagnosis.
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My biggest problem the scare of my sight it terrified me I never want to be in that position again to be honest I would never wish it on any one... I use a glucoman machine it reads ketone too I'd love the sensor in arm ad I work on cars alot my worry is fingers getting a infection.. but it has been a huge wake up call I'm so proud of myself for taking this journey serious and changing diet watching sugars and so on my bloods are still a bit all over from 4s to high 8s but managing it so much better than at first... I use tressiba insulin also nova rapid meal times and 1 metformin in the morning and 1 in evening I'm embracing the journey and trying to keep as much as I can on the right track.. update on my mother she is in good spirits 2 toes to be removed waiting on theater today it got cancelled I'm very annoyed about as she has heart failure can't be put to sleep because risks so they will be freezing but I think it's cruel every morning 2 am nil by mouth and so on keeps getting prospered I'm worried for mental well being if keeps happening as must take alot of mental preparation every day to be ready for it to get knocked back again must be tough
 
That situation with your Mam in the hospital waiting for surgery really is awful and yes it must be incredibly challenging mentally as well as physically having to psych yourself up each day and have Nil by Mouth in preparation only for it, and then not to go ahead.
As regards your sight, as I explained in your other post, blurry vision is extremely common when HbA1c is very high and is almost always reversed when levels come down again although bringing them down slowly is kinder to them than dropping your levels too quickly. I am so relieved for you that it has resolved as quickly as it has in your case as much as anything to relieve your anxiety.

I am really not sure why they think you might be MODY. Type 1 has a genetic element too and would be the most likely diagnosis in your situation. MODY is very rare and your mother would almost certainly be MODY in order for you to be. The testing for MODY is very expensive and takes weeks for the results to come through, if you can persuade a doctor to authorize the tests. Personally I would much rather be a straightforward Type 1 because everyone understands that, there are no question marks about it and the treatment path and access to technology like Libre is relatively straight forward. I know you say that they are treating you as Type 1 but they haven't given you a Libre yet and as a Type 1 they should have.... All Type 1s should be offered Freestyle Libre. Do you have a nurse who is ringing you regularly to check on your progress? If so, ask him/her for Libre sensors on prescription.
 
rebrascora said:
That situation with your Mam in the hospital waiting for surgery really is awful and yes it must be incredibly challenging mentally as well as physically having to psych yourself up each day and have Nil by Mouth in preparation only for it, and then not to go ahead.
As regards your sight, as I explained in your other post, blurry vision is extremely common when HbA1c is very high and is almost always reversed when levels come down again although bringing them down slowly is kinder to them than dropping your levels too quickly. I am so relieved for you that it has resolved as quickly as it has in your case as much as anything to relieve your anxiety.

I am really not sure why they think you might be MODY. Type 1 has a genetic element too and would be the most likely diagnosis in your situation. MODY is very rare and your mother would almost certainly be MODY in order for you to be. The testing for MODY is very expensive and takes weeks for the results to come through, if you can persuade a doctor to authorize the tests. Personally I would much rather be a straightforward Type 1 because everyone understands that, there are no question marks about it and the treatment path and access to technology like Libre is relatively straight forward. I know you say that they are treating you as Type 1 but they haven't given you a Libre yet and as a Type 1 they should have.... All Type 1s should be offered Freestyle Libre. Do you have a nurse who is ringing you regularly to check on your progress? If so, ask him/her for Libre sensors on prescription.
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I agree with @rebrascora. One small thing worth a mention is that when I was going through testing and I mentioned to them that non of my family have MODY they said that they may have but although their sugars can be higher they usually fall around the high end of normal so it’s not picked up. The most common types of MODY typically have HBA1c of around 40-50. The insulin response is just late but does work eventually, kind of like having a glucose thermostat set a little higher. @tony1990 having bloods in 4’s to 8’s is not all over the place, it would be perfect for even a non diabetic so you are doing great !
 
EmmaL76 said:
I agree with @rebrascora. One small thing worth a mention is that when I was going through testing and I mentioned to them that non of my family have MODY they said that they may have but although their sugars can be higher they usually fall around the high end of normal so it’s not picked up. The most common types of MODY typically have HBA1c of around 40-50. The insulin response is just late but does work eventually, kind of like having a glucose thermostat set a little higher. @tony1990 having bloods in 4’s to 8’s is not all over the place, it would be perfect for even a non diabetic so you are doing great !
Click to expand...
The thing I read was that people with MODY still produce insulin and don't usually need insulin. It must make it more tricky to get the balance right when they are getting insulin from two different sources.
 
grovesy said:
As I understood it there is not just one type of MODY, and they are not all treated the same.
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Yes there are about 16 all having a different gene mutation. There are 2/3 type that make up the vast majority.
 
EmmaL76 said:
I agree with @rebrascora. One small thing worth a mention is that when I was going through testing and I mentioned to them that non of my family have MODY they said that they may have but although their sugars can be higher they usually fall around the high end of normal so it’s not picked up. The most common types of MODY typically have HBA1c of around 40-50. The insulin response is just late but does work eventually, kind of like having a glucose thermostat set a little higher. @tony1990 having bloods in 4’s to 8’s is not all over the place, it would be perfect for even a non diabetic so you are doing great !
Click to expand...
I'm pleased with bloods at them numbers before that they were all over the place from 13 to 5 but with changes to diet there staying in the normal range I'm kinda glad it's happend I feel brilliant for doing right things even had a comment on my skin looking better for healthier diet .... not like I though I looked rough but must of had negative affects to body in more than just weight the bad diet
 
EmmaL76 said:
Hi there, sorry you have been so unwell. Just a quick question, do you have family members with mody and is this how your type has been determined? I only ask as the genetic testing for MODY takes several months as I’ve just had it done myself, another guy I know of it has taken even longer and it took me 18 months to get the referral in the first place! So you have been very lucky.
Click to expand...
Hi Emma can you say how long you waited for your exeter results as am waiting for mine
 
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