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Need help - posting on behalf of my boyfriend

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

mhamid25

New Member
Relationship to Diabetes
Type 1
We need help! my boyfriend is 26 years old and type 1 diabetic he suffers from nerve damage, blindness and yesterday was told his kidneys are failing. Please can someone help advise what to do. He takes insulin but also diabetes is not controlled, we need guidance or anyone that is suffering the above what recommendations you can provide. Thank you!
 
Hello @mhamid25

I’m so sorry to hear about all the problems your boyfriend has. That must be very difficult indeed. How long has he had Type 1?

Has he been given any medication for his kidney problems? Do you know what his HbA1C is, or what kind of blood sugar test results he’s getting?

Ultimately, keeping blood sugar in range as much as possible is the only way forward. Is he getting support to help him do that?
 
Hi @Inka

Thanks so much for replying. He's had Type 1 for around 20 years.

He doesn't talk much about it and honestly I would not know if he has been given medication for this.

His diet is not controlled in anyway and takes his insulin around twice a day.

I need help with who to get support from? would this be GP - every time I try to ring for an appointment for him they've always been so busy, feels like we're being neglected.
 
If you are in the U.K., your boyfriend should be getting annual checks from at least a nurse who has a special interest in Diabetes at the GP surgery, and preferably, at a consultant clinic at the hospital. So, he should have a number to call, and the name of a person to speak to. If his isn’t being done, then, make a fuss and quote the '15 checks' which all diabetics should have. The detail can be found here.
 
Some type 1s are under the hospital. Even then, GP practice could still be taking an interest. Patients are supposed to have a "named" GP, who you can try asking for. Or the nurse with a special interest in Diabetes as Robin says. There might be a GP at the practice who does too.
Some GP practices have their own website, where you can look up contact details, and may list staff, along with areas they are working in. You could also look up the info on the nhs website. You can look up individual practice info on NHS site.
You could try writing, addressing it to the person "specialising" in diabetes at the practice. Or the named GP. There's always the practice manage, who could direct you to the best person to talk to.
Are you actually in a position to talk to medical people? As I think they may not always share info with relatives.
 
@mhamid25 A GP might be able to give some initial advice about his kidneys but if it was me, I’d try getting hold of a DSN (Specialist Nurse - not like the GP ‘experts’ who often don’t know much about a Type 1). Your local large-ish hospital should have a Diabetes Dept who you can access through the general switchboard.

It sounds like your boyfriend might be in denial or even to scared to face things. There is support out there for him and he’s not alone. He can make improvements to his control with help. Would he consider joining this forum himself? We’re all friendly and we understand how hard diabetes can be.
 
Has he had any help with carb counting as an adult? A lot had changed in diabetes management since he was diagnosed and there are tools available to help him to get tighter control of his glucose levels. A good DSN will be able to guide him through all that so the diabetes department at the hospital is the place I would be chasing as Inka says.
 
Welcome to the forum @mhamid25
I am sorry to hear of the complications that your boyfriend is experiencing.

It sounds like he is still using mixed insulin, and there are now much more effective management programmes available. Unfortunately many GPS are still not familiar with these as they will come across so few people with T1. It is important that he is given access to specialist diabetes care, which will be available at his local hospital. This is very different from the care at a GP practice where identified staff will have an interest in Diabetes but not the experience in managing insulin regimes.

He would benefit if he was able to switch to Mutiple daily injections, using a background insulin which deals with the glucose that his liver is releasing, and then Bolus insulin which would accompany any meal that he eats. It is more to do but enables you to keep glucose levels more steady, and this may help to prevent further complications.
 
Hi @mhamid25
It can be really difficult as a partner to see someone facing health difficulties and not know how to help. As others have suggested the most helpful thing to reduce further complications is keeping bgl as close to target as possible. It’s not clear whether your boyfriend uses a very old 2 per day insulin treatment as has been suggested or whether he is finding it difficult to take his bolus insulin (insulin taken with food mostly) and is only taking his basal/back ground insulin which is usually taken once or twice per day. Either way a discussion about whether he is on the best insulin regime for him could be helpful to have with his team.
You can try and get in touch with his diabetes nurse/doctor who are probably hospital based, but be prepared that they might not be able to discuss much with you due to confidentiality, but they should listen to your concerns.
You mention that he doesn’t talk about it much, does he know how concerned you are and that you want to help?
In terms of learning a bit more about diabetes and how it is treated and things you can help with, you might find it helpful to have a look through the Learning Zone (the orange tab at the top of the page).
You clearly care about him very much, I do hope you both manage to get some support in getting on top of things.
 
Welcome @mhamid25,
It must be really difficult knowing how to help your partner with his diabetes - I would agree with the others about trying to get an appointment with his GP as a good first step. Also I would really recommend taking a good look at the Diabetes UK website for tips and advice, and encourage him to have a read of the forum for moral support!
 
If you are in the U.K., your boyfriend should be getting annual checks from at least a nurse who has a special interest in Diabetes at the GP surgery, and preferably, at a consultant clinic at the hospital. So, he should have a number to call, and the name of a person to speak to. If his isn’t being done, then, make a fuss and quote the '15 checks' which all diabetics should have. The detail can be found here.
Thank you so much for this!
 
Has he had any help with carb counting as an adult? A lot had changed in diabetes management since he was diagnosed and there are tools available to help him to get tighter control of his glucose levels. A good DSN will be able to guide him through all that so the diabetes department at the hospital is the place I would be chasing as Inka says.
Is there a way to find a local DSN or would have to go through NHS?
 
Hello @mhamid25

I’m so sorry to hear about all the problems your boyfriend has. That must be very difficult indeed. How long has he had Type 1?

Has he been given any medication for his kidney problems? Do you know what his HbA1C is, or what kind of blood sugar test results he’s getting?

Ultimately, keeping blood sugar in range as much as possible is the only way forward. Is he getting support to help him do that?
He told me today that his HbA1C is very high and above 6 and his blood sugars are also very high
 
Has he had any help with carb counting as an adult? A lot had changed in diabetes management since he was diagnosed and there are tools available to help him to get tighter control of his glucose levels. A good DSN will be able to guide him through all that so the diabetes department at the hospital is the place I would be chasing as Inka says.
Never had help with this before, he doesn't have a nurse that I know of, if there is an issue he makes an appointment with his GP, from what I know of his doctors surgery does not have a diabetes specialist, will the GP be able to refer him to one?
 
Welcome to the forum @mhamid25
I am sorry to hear of the complications that your boyfriend is experiencing.

It sounds like he is still using mixed insulin, and there are now much more effective management programmes available. Unfortunately many GPS are still not familiar with these as they will come across so few people with T1. It is important that he is given access to specialist diabetes care, which will be available at his local hospital. This is very different from the care at a GP practice where identified staff will have an interest in Diabetes but not the experience in managing insulin regimes.

He would benefit if he was able to switch to Mutiple daily injections, using a background insulin which deals with the glucose that his liver is releasing, and then Bolus insulin which would accompany any meal that he eats. It is more to do but enables you to keep glucose levels more steady, and this may help to prevent further complications.
Thank you for this info. I will definitely be reaching out to the local hospital for some guidance here to see if we can get a programme together.
 
He told me today that his HbA1C is very high and above 6 and his blood sugars are also very high
6 isn't that high.
To confuse matters there are two scales that people use for HbA1c results (an old one, and a newer one). Unfortuneatly, even worse, the old numbers look like resutls from a finger prick test. They are completly different things though.
Ranges for HbA1c (in new figures) are:
30(?) to 41 "normal"
42 to 47 is called pre diabetic.
48 (6.5) and above gets your a diagnoses of diabetes (even if it then goes down below this, you're still down as diagetic).
Some people, at diagnoses, are in the 50's & 60's. A number of people on here were around 100 or higher at diagnoses.
48 in the new figures = 6.5 in the old figures.

So, an HbA1c of 6 is low for a diabetic.

HbA1c is an average for the last 90 - 120 days.
Finger prick test shows your BG at that moment, and will change throughout the day, and from day to day. Paticularly after eating.
 
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