Total newbie. Many problems type 1 & introduction. Hi

[vw_anni]

Evening everyone.

I have been using the site for sometime now but never registered until now.

I am male. 35 years old had type 1 for 20 years now. Was on novorapid and levemir until just over a yet ago when I started on a pump with novorapid due to unstable levels.

Probably like most people I've been off the rails slightly in the last 20 years but have always made it to my appointments and taken my insulin. I feel things have gotten a lot better in the last 20 years from when I first started. In the last year I have been having some problems and would like some advice or to hear from anyone who's going through the same as me. Or shed some light on it as it's still a lot to take in and understand. Guess early days of being diagnosed you don't think nasty stuffs gonna happen to you but the scary thing is I'd does.

My son who's now 10 has been type 1 for the last couple years so I do my best to look after myself so he will follow and do the same

Hopefully someone can share some advice on what I'm going to list

I have had early retinopathy changes for the last 5 years until new year when I was told I needed laser there and then. I panicked but went ahead with it. I was told I'd need 2 thousand in each eye but have had floaters and small bleeds. Now had 3600 in my right and 1600 in my left so far. Back tomorrow for 500 more in each eye. Last letter I received after my appointment told me I had new vessels. I thought this would have gotten better after all these lasers ? I will ask tomorrow but has anyone had this before ?

I had diabetic app last week

I have high blood pressure so doubled my tablets.

Blood in my urine due to 2 small kidney stones

Protein my urine

5.4mmol cholesterol reading. Doctor mentioned statin for this. I have no idea what these even are.

My HbA1c has been 61

Also have 4 trigger fingers again after steroid injections didn't last long last year.

Thanks in advance for looking and possible giving some advice.

 

[noblehead]

Welcome to the forum.

Do ask away tomorrow when you see the Ophthalmologist, but when you have diabetes retinopathy its important to keep your bg, bp and cholesterol levels under control, if bg control has been poor for some time then it's said to make changes slowly as sudden tightening of bg control can make the condition worse.

Have a look at the following, its an excellent website for information and advice on retinopathy:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

 

[himtoo]

hey there -- a warm welcome!!
some of your post resonates with me - i have had laser on my eyes ( but not that many "hits")
i have had operations on 5 fingers for trigger finger .

could you have a look at the noctura sleep mask ( you sound an ideal person for it )
I have been using this for the past 16 months with improvements to my background vision.
link here http://noctura.com/

hopefully some others will be along soon !! keep posting !!.

 

[asa35]

Hi, like yourself, I have had diabetes for just over 20 years and have only just registered on this site. Similarly I was also on Novo and Levemir, but have just gone onto Tresiba (Degludec) because readings (HbA1c) has been too high over many years. I'm afraid I can't offer much advice to you as you seem to have a lot to cope with, much more than most. I have an appointment due shortly for retinopathy to see how advanced it is. To help me get a better understanding , I am using the Abbot Libre scanner. This gives great information for how the insulin is behaving. Is the pump not giving the results you hoped for?

 

[vw_anni]

Welcome to the forum.

Do ask away tomorrow when you see the Ophthalmologist, but when you have diabetes retinopathy its important to keep your bg, bp and cholesterol levels under control, if bg control has been poor for some time then it's said to make changes slowly as sudden tightening of bg control can make the condition worse.

Have a look at the following, its an excellent website for information and advice on retinopathy:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

Thanks for your reply. My bloods hba1c has gone from about 100 down to 61 in less than a year but I had no idea that something like that could cause a problem.

 

[vw_anni]

hey there -- a warm welcome!!
some of your post resonates with me - i have had laser on my eyes ( but not that many "hits")
i have had operations on 5 fingers for trigger finger .

could you have a look at the noctura sleep mask ( you sound an ideal person for it )
I have been using this for the past 16 months with improvements to my background vision.
link here http://noctura.com/

hopefully some others will be along soon !! keep posting !!.

Hi. I'm not sure how to use a forum lol. Don't have to quote to reply to you ? Can you let me know how you go about getting one of these masks ? Is there a cost for these ?

Thanks

 

[vw_anni]

Hi, like yourself, I have had diabetes for just over 20 years and have only just registered on this site. Similarly I was also on Novo and Levemir, but have just gone onto Tresiba (Degludec) because readings (HbA1c) has been too high over many years. I'm afraid I can't offer much advice to you as you seem to have a lot to cope with, much more than most. I have an appointment due shortly for retinopathy to see how advanced it is. To help me get a better understanding , I am using the Abbot Libre scanner. This gives great information for how the insulin is behaving. Is the pump not giving the results you hoped for?

Thanks for your reply. Hopefully we will both get some good help from here. Great I've had replies already.

I am actually really happy with going onto a pump. My control has never been as good for a long long time but also took a lot of work with lots of testing and accurate carb counting. I have never heard of an abbot Iibre scanner before. I'll need to have a Google and see what that is. At my last appointment I was told I'd better do some fasting to check my Basel settings on my pump are correct.

 

[himtoo]

Hi. I'm not sure how to use a forum lol. Don't have to quote to reply to you ? Can you let me know how you go about getting one of these masks ? Is there a cost for these ?

Thanks

hi there @vw_anni
the noctura sleep mask in not available on the NHS ( still going through NICE approval trials )
it costs £250 for a mask that lasts 12 weeks ( so just over £1000 per year)
get in touch ( send an email) to the link i gave you in the above post.
the customer service peeps will get back in touch to speak with you and determine suitability
then if suitable they will tell you the nearest optometrist to you to be able to get one.

 

[noblehead]

Thanks for your reply. My bloods hba1c has gone from about 100 down to 61 in less than a year but I had no idea that something like that could cause a problem.

Read the following from the same website, it says sudden improvements in bg control may cause rapid and often uncontrollable retinopathy, nothing conclusive but do ask your Ophthalmologist today if any doubts about improving your diabetes control further:

http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm

 

[Dark Horse]

Evening everyone.

I have been using the site for sometime now but never registered until now.

I am male. 35 years old had type 1 for 20 years now. Was on novorapid and levemir until just over a yet ago when I started on a pump with novorapid due to unstable levels.

Probably like most people I've been off the rails slightly in the last 20 years but have always made it to my appointments and taken my insulin. I feel things have gotten a lot better in the last 20 years from when I first started. In the last year I have been having some problems and would like some advice or to hear from anyone who's going through the same as me. Or shed some light on it as it's still a lot to take in and understand. Guess early days of being diagnosed you don't think nasty stuffs gonna happen to you but the scary thing is I'd does.

My son who's now 10 has been type 1 for the last couple years so I do my best to look after myself so he will follow and do the same

Hopefully someone can share some advice on what I'm going to list

I have had early retinopathy changes for the last 5 years until new year when I was told I needed laser there and then. I panicked but went ahead with it. I was told I'd need 2 thousand in each eye but have had floaters and small bleeds. Now had 3600 in my right and 1600 in my left so far. Back tomorrow for 500 more in each eye. Last letter I received after my appointment told me I had new vessels. I thought this would have gotten better after all these lasers ? I will ask tomorrow but has anyone had this before ?

I had diabetic app last week

I have high blood pressure so doubled my tablets.

Blood in my urine due to 2 small kidney stones

Protein my urine

5.4mmol cholesterol reading. Doctor mentioned statin for this. I have no idea what these even are.

My HbA1c has been 61

Also have 4 trigger fingers again after steroid injections didn't last long last year.

Thanks in advance for looking and possible giving some advice.

New vessels are fragile and leak blood easily, hence your "floaters". Extensive laser (pan-retinal photocoagulation) aims to cause the new vessels to regress but this may take several weeks and several rounds of laser may be needed before there is sufficient response. The ophthalmologist should monitor you closely until they are sure the retinopathy is stable and no further treatment needed.

The best way to prevent further diabetic retinopathy is to maintain good control of HbA1c and blood pressure.

 

[steve_p6]

Read the following from the same website, it says sudden improvements in bg control may cause rapid and often uncontrollable retinopathy, nothing conclusive but do ask your Ophthalmologist today if any doubts about improving your diabetes control further:

http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm

I cant find the links but there are papers out there indicating that the short term impact is outweighed by getting better BG control sooner. Either way for many of us who have been in this situation its the wake up call to properly get a grip before any other wheels come off. I'll reiterate my warning for anyone with retinopathy - your eyes are now fragile, no more daft bungee jumps etc, bashing your head can/does trigger retinal bleeds - wish I had been warned!

 

[noblehead]

I cant find the links but there are papers out there indicating that the short term impact is outweighed by getting better BG control sooner. Either way for many of us who have been in this situation its the wake up call to properly get a grip before any other wheels come off. I'll reiterate my warning for anyone with retinopathy - your eyes are now fragile, no more daft bungee jumps etc, bashing your head can/does trigger retinal bleeds - wish I had been warned!

Yes your right the article I posted (and many more like it) say that good bg control is beneficial and essential in the long-term.

 

[vw_anni]

Thanks for all the advice from everyone. I had another 500 burns 250 in each eye yesterday and need to go back in 3 weeks. He showed me images of my eyes from late December when I first went. And what they are like now and there is an improvement. Was quite amazing to see my eye with all the laser burns on it. Is there a maximum amount of laser burns that can be given to an eye ?

As for the bp I am back at go next week to get that checked. Said my cholesterol at 5.4 mmol was slightly on the high side. Can anyone tell me what a normal good reading is please ?

 

[noblehead]

As for the bp I am back at go next week to get that checked. Said my cholesterol at 5.4 mmol was slightly on the high side. Can anyone tell me what a normal good reading is please ?

These are the target cholesterol levels that they want people with diabetes to aim for:


Blood fats (lipids)
Lipids are the cholesterol and triglycerides in your blood. Cholesterol is a type of fat found in all of us. You may be familiar with the term blood cholesterol, but what you may not know is that not all cholesterol is bad. Some of it, HDL (high density lipoprotein), can actually protect against heart disease. Low levels of this protective HDL cholesterol increase your risk of cardiovascular disease (CVD). However, LDL (low density lipoprotein) cholesterol is the bad form of cholesterol in the blood. Triglycerides are another type of fat in the blood. If you have raised cholesterol and raised triglycerides you have an increased risk of CVD.

• Your total cholesterol level should be below 4.0mmol/l.
• LDL levels should be less than 2.0mmol/l.
• HDL levels should be 1.0mmol/l or above in men and 1.2mmol/l or above in women.
• Triglyceride levels should be 1.7mmol/l or less.

https://www.diabetes.org.uk/Guide-to-diabetes/Monitoring/Testing/

Pleased that there's been some improvement, do try and get your bp and cholesterol under control as this will help with your retinopathy issues. Good luck.

 

[vw_anni]

@noblehead
Thanks for that info. I'll need to get a look at what all my levels are.

As for my eyes. I don't wear glasses but work in front of a computer all day and sit under fluorescent lights at work. Are there any glasses or type of lenses I could wear to help my eyes. Or just normal sunglasses.

I have been wearing normal sunglasses for driving and sitting at my desk for a while after my laser hits but wonder if continuing to wear some kind of sunglasses will help my problem.

Thanks

 

[noblehead]

@noblehead
Thanks for that info. I'll need to get a look at what all my levels are.

As for my eyes. I don't wear glasses but work in front of a computer all day and sit under fluorescent lights at work. Are there any glasses or type of lenses I could wear to help my eyes. Or just normal sunglasses.

I have been wearing normal sunglasses for driving and sitting at my desk for a while after my laser hits but wonder if continuing to wear some kind of sunglasses will help my problem.

Thanks

I wear glasses for driving and get mine from Specsavers, they do a anti-glare coating which cost around £10, they sometimes do a special offer where you get the coating free if you spend over a certain amount or if buy two pairs.

 

[Simon_Soanes]

Hi I've had diabetes for 43 years and at my 15 to 20 year had extensive laser treatment which left my night vision very poor headlights just seem to blind me . I have a lot of trouble getting my blood sugars right and I have paid a heavy price , I won't give you details but it's grim . Do all you can to be active and well controlled and urge your son to do the same but it's not for a few months it's for life and you have to live as well . Good luck .

 

[Dark Horse]

I cant find the links but there are papers out there indicating that the short term impact is outweighed by getting better BG control sooner. Either way for many of us who have been in this situation its the wake up call to properly get a grip before any other wheels come off. I'll reiterate my warning for anyone with retinopathy - your eyes are now fragile, no more daft bungee jumps etc, bashing your head can/does trigger retinal bleeds - wish I had been warned!

If you're interested, here's one relevant link:- http://www.medscape.com/viewarticle/452955 or if you can't get access:- https://www.researchgate.net/post/D...ulin_therapy_because_of_worsening_retinopathy

Here's a brief summary:-

"The DCCT [Diabetes Control and Complications Trial] documented "early worsening" of diabetic retinopathy in the study population.... Nevertheless, after 18 months this early worsening in retinopathy reversed, and patients in the intensive-treatment group fared better than those on conventional therapy. Risk factors for early worsening were higher hemoglobin A1c level at baseline and reduction of this level during the first 6 months following randomization. There was no evidence that a gradual reduction in A1c levels reduced the risk of early worsening.

In the DCCT, the long-term benefits of intensive control clearly outweighed the risk of early worsening of retinopathy, and no case of early worsening resulted in serious visual loss. Based on these findings, it is recommended that persons with type 1 or type 2 diabetes initiate intensive therapy as early as possible, and maintain intensive therapy for as long as possible, with the expectation that intensive control of blood glucose levels will reduce the risk of onset and progression of diabetic retinopathy"