What do you wish you were told? (T1D)

[nskelton]

Made aware of lipohypertrophy (lumps) and the full effect of rotation. Left with a lump on the abdomen that is unsightly to myself and I do get conscious over it and haven't injected in it for months on end and I don't see any improvement

 

[johncon]

Wish there was more known about kick backs and dawn phenomenon back in the day. Ended up with a downward spiral of injecting more background insulin to combat the morning highs which were probably the result of either one of these but more than likely a combination of both (I'm on very little insulin between Midnight and 4am and then need quite a bit to negate the waking highs).

 

[Wurst]

When I was eating loads of protein, my eGFR was worse than I was eating slightly less, but I test my urine for protein and I wasn't (and still am not) seeing any. The tests that I had done didn't show up particular issues with kidney function.

Lucky you!

 

[smag3]

Thyroid problems, weird skin pigment thing, though it is only a problem in the summer! basal testing, low carbing but I have caught up on that now, that the doctors do not know everything and to do my own research. Enough?

 

[MichaelWM]

Made aware of lipohypertrophy (lumps) and the full effect of rotation. Left with a lump on the abdomen that is unsightly to myself and I do get conscious over it and haven't injected in it for months on end and I don't see any improvement

Dude I feel it too!

I've only been injecting for 8 weeks ish and I'm already noticing lumps in my lower abdomen,

the feels...

 

[MichaelWM]

It seems that low carb high fat dietary changes is something we were all told about at diagnosis, is there no resource online specifically for diabetics and keto diet?

 

[Cathn61may]

That you can lead a normal life as long as you inject and eat sensibly. I lived in fear for over 40 years of having high sugar levels and complications setting in. 5 years ago my Diabetic Consultant said you can run your sugar levels slightly higher to have a threshold when my sugar levels dropped. Hypo Queen. Now I am fine. The Paediatric Consultant told me when I was diagnosed that if my sugar levels were high I would have complications such as loosing limbs, heart disease, blindness. I lived in constant fear. Type 1 for 49 years.

 

[MichaelWM]

@Cathn61may Sorry to hear about your pain over the years, and I'm glad you're doing better in recent years. Just out of curiosity, what did your consultant say your bloods can run slightly higher at?

 

[xxAJxx]

Hi everybody.

I have a quick question for you all, and that is...

What are some things you wish you were taught about your T1D which would have made treating it much easier?

I'll be sticking around for a little to enjoy your responses.

3....2....1....GO.

I wish i had been told that hypo's can cause damage to the brain been type 1 for 9 years and only just found that out less than a year ago and also of the links between diabetes and alzheimers, i had a stroke back in 2004, my family and myself has noticed a degeneration in my memory since then as the clot is still in my brain, my dsn has advised i see my gp to be referred to a memory clinic what make this even more terrifying for me, is the fact that im only 30, my son is only 8, i want to know who he is as he grows up! Has anyone else experienced anything similar??

 

[pinewood]

Small point, but I am genuinely puzzled why hospitals seem to issue 8mm (or longer) needles as standard. I'm slim/lean and yet I was issued with 8mm needles and only changed to 4mm after researching myself.

 

[Nicola M]

I wish I was told it wasn't always going to be plain sailing. I grew up with diabetes in the children's department and it was always so easy as a child but getting older things changed and I wish someone had told me back then that it doesn't always stay easy.

 

[Heathero]

When a child 5 years initially managed by parent. No warning re Hypos till approx 20yrs when change to Mdi used to ensure ate carbs to stop hypos, low carb not really aware of. Wish I'd been educated re this.(Now on pump even easier and keeping carbs lower.)

 

[ArtemisBow]

Two things for me.

1. You need to tell the DVLA about your diabetes, and ALSO your insurance company. I got told about 5 different times about the DVLA part but never the insurance bit.

2. What rotating sites actually means - you get told it's important, but every time I've asked for how to do it I just get told it's to stop lipohypertrophy. Does that mean I can use the same site several times in a day and then move somewhere else tomorrow? Move site everytime? How soon can I go back to an existing site - a week later? A month later? So far I haven't managed to get a clear answer on this from any nurse or doctor.

 

[cz_dave]

That low carb , high fat can actually cause cholesterol problems (in certain people) and too much protein can affect kidney function. I jumped straight on the LCHF bandwagon after diagnosis and it had some side effects after a few years.

I have the same experience. Immediately after I adopted LCHF, my LDL cholesterol skyrocketed. Reducing saturated fat helped. Anything else I should be weary of on LCHF?

 

[cz_dave]

I believe that omega 6 polyunsaturated fats consumed in excess are believed to be the only type of fat to negatively affect cholesterol balance. I'll try and find some studies when I'm back on the desktop

I would blame saturated fats.

 

[Wurst]

I have the same experience. Immediately after I adopted LCHF, my LDL cholesterol skyrocketed. Reducing saturated fat helped. Anything else I should be weary of on LCHF?

Eventually , after many attempts, I realized I could not simply lower my LDL by reducing fat. I blitzed it with artichoke tablets (high dose) and margarine (with plant sterols). Doctor put me on statins but I rarely take them.

Do you have any history of cholesterol problems in your family ?

 

[cz_dave]

Thanks for the additional info. My mother is on statins and her father actually died of artherosclerosis. So, high LDL cholesterol is something I am taking seriously. In fact I went for another checkup a couple of weeks ago. My LDL cholesterol is still a bit higher than what's normal but not very high anymore (that was the case when I started LCHF with lots of cheese, butter, etc.). I continue the saturated fat restriction in my diet as it seems to help to keep my LDL at bay. I am in my 40s, things may deteriorate later and then I will have to decide whether to take statins. My doctor said he will not put me on statins yet as my HbA1c is under control. He does not seem to be a big fan of statins it looks like.

How do you find the artichoke tablets? Do they help?

 

[Wurst]

Thanks for the additional info. My mother is on statins and her father actually died of artherosclerosis. So, high LDL cholesterol is something I am taking seriously. In fact I went for another checkup a couple of weeks ago. My LDL cholesterol is still a bit higher than what's normal but not very high anymore (that was the case when I started LCHF with lots of cheese, butter, etc.). I continue the saturated fat restriction in my diet as it seems to help to keep my LDL at bay. I am in my 40s, things may deteriorate later and then I will have to decide whether to take statins. My doctor said he will not put me on statins yet as my HbA1c is under control. He does not seem to be a big fan of statins it looks like.

How do you find the artichoke tablets? Do they help?

I take these artichoke tablets. There must an equivalent in the UK......

https://www.mycare.de/online-kaufen...gees-0622960?gclid=CIjHsvais8oCFeTnwgodkW4IJQ

Sometimes I find myself a bit achey, can't sleep or my fasting blood sugar a bit high after continuously taking statins. I was only prescribed 10 mg , the lowest dose but keep up the pretense of taking them for the health insurance's sake.

The artichoke tablets and margarine I tend to use instead of statins, not really sure which one works best but I more than halved my LDL in a couple of months.

There are a number of debates whether having high LDL is even dangerous , but when I lowered mine significantly I felt so much better overall.

 

[cz_dave]

I think it is better not to have high LDL. My doctor would like to see my LDL at 2.5 but I am currently at 3.15 (3.0 being the limit where I live). Do you think 2.5 is a target to aim for? I am not sure if I can do it on diet alone though.

By the way, your BG control seems excellent!

 

[petepontiac]

I wish someone would be honest regarding Statins, are they good for you or not and if not why did the hospital put me on them!!