Things I learned from this forum

[Emmotha]

I've been thinking a lot about my diagnoses in June and what I've learned so far. I realised that there was quite a lot of info that I learned from this forum and not the doctor.... Here goes:

1) prescriptions for T1s are free. The pharmacy nor the diabetes team pointed this out to me

2) medical waste bins are on prescription. I had to make an appointment with the GP to add it on

3) that you may need a flu jab

4) sick day rules

5) stress and hot weather can affect BS

Has anyone else learned more here than from the docs?

Thank you forum!

 

[mo53]

Hello Emmotha. What a good idea for a thread. Yes I have learned a phenomenal ammount more from here. I have found out:
that it is advisable for T2s to get a monitor and to test
that carbohydrates turn to sugar and that following a low carb diet can help your bs levels
why diabetics are offered different tests eg eye tests
in fact the list is endless. I wouldnt have a clue if someone hadnt directed me towards this site. So thank you everybody

 

[IanD]

Not T1 myself but I learnt about the low carb diet from a T1, Fergus, & that advice resulted in an end to crippling neuropathy & restoration of active life.

 

[IanD]

The strength of this forum is that you can ask a question & get an answer from fellow diabetics who have been coping with the same problems - & often have an answer that the professionals - who are not diabetic - cannot help with.

And, you don't need an appointment.

 

[CarbsRok]

I've been thinking a lot about my diagnoses in June and what I've learned so far. I realised that there was quite a lot of info that I learned from this forum and not the doctor.... Here goes:

1) prescriptions for T1s are free. The pharmacy nor the diabetes team pointed this out to me

2) medical waste bins are on prescription. I had to make an appointment with the GP to add it on

3) that you may need a flu jab

4) sick day rules

5) stress and hot weather can affect BS

Has anyone else learned more here than from the docs?

Thank you forum!

I hope you also realise that you have to apply for the exemption certificate for your free meds
Many people just think they have to tick the box to say they are exempt, when in fact they have to fill in a form and send it off and then receive a card in the post to show the pharmacist on request.

 

[Emmotha]

Thanks to the forum I did and applied straight away, then got a big refund!

 

[jack412]

LCHF
how to test BG after meals
lots of little things that help me cope

 

[Bluetit1802]

That carbs turn to glucose
That I needn't be afraid of eating real fat
That plastic low fat spreads are bad for you
That I like yogurt
That I like cheese
(would never have tried these but for this forum)
That testing is the key
That advice from fellow diabetics works much better than advice from the NHS

 

[Brunneria]

Before I came here (back in what seems like prehistory!), I didn't know that:

Honeymoon periods existed
The vast differences and many similarities between type 1s and 2s
That glucometers could be bought privately
That NHS dietary advice was so behind the current research
That a forum could exist with such lovely, helpful, informative people (my previous observation was that forums were brutal places - this one disproves that rule)
That my body responds better to 'eating to my meter' than I could have imagined
The beneficial effect that exercise has on my body

And I had only the vaguest idea of the extent of diabetes complications available to the unwary.

Edited to add: oops, just realised this is in the Type 1 section. So some of my comments above won't apply

 

[noblehead]

Far too many to list, and the learning goes on and on when you have a condition like diabetes.

One thing about this forum (and the DOC as a whole) is you can learn as much from someone who has been recently diagnosed as you can from those who have had the condition for 10, 20, 30, 40 or 50 years, everyone brings something to the forum even though they may not see it.

The answer to your question Emmottha would be a combination of both together with my own experiences; good thread btw

 

[Emmotha]

Wow that's a long time to be undiagnosed!

 

[Emmotha]

I was undiagnosed for at least 6 months and thought that was a long time. Only when I demanded a blood test did they spot it - by which time I was in DKA! I shudder to think what could have happened

 

[Bluetit1802]

It applies mainly to Type 2's who wander around undiagnosed for years before feeling ill enough to visit the GP.

 

[LucySW]

What people have already mentioned, and also:

- everything that with other LADAs we have gradually pieced together about LADA (told nothing and hospital people don't seem to know)

- lots of practical advice and ideas about following the life-saving Bernstein approach and making it work

-lots of detailed practical advice about how people take their insulin

- getting an idea of what the real puzzles are that we need to know about behind our metabolisms: not just carbs, but protein and fat; and getting a sense for what our systems are really up to (needing a CGM).

Lucy

 

[yingtong]

With diabetes you never stop learning at least I don't.

 

[this is too difficult two]

Not T1 myself but I learnt about the low carb diet from a T1, Fergus, & that advice resulted in an end to crippling neuropathy & restoration of active life.

Can I very like?

 

[Robbity]

My own GP who diagnosed my diabetes recommended the Atkins diet (I don't follow it, but do low carb), and my diabetic nurse pointed me towards this forum, so essentially I owe a great deal of my progress to these two people! From my practice diabetes specialist doctor (seen twice) all I've learned is that I will not go to him for help or advice - he's got what my husband calls a "good bedside manner" but seems completely incapable of giving me any helpful diabetic advice. From my husband who has a diabetic friend who tests, I was first given the idea of getting a meter. Everything else I know I've learned and am still learning here or from further research on the web.

Robbity

 

[Susan1991]

I've learned everything I know from here and research on the www.
Obviously backed up or rubbished by other diabetics here.
What did I learn from the GP & NHS?
That you can have diabetes for 12 - 20 years, present with symptoms repeatedly and still not be diagnosed correctly.
So I'd say I learnt a big fat 0 from the GP & NHS

I was first tested age 18 in 1975 by a single urine sample and they failed to detect it. After the birth of my first child I lost a lot of weight and they tested again, same thing happened, that was 1981. I kept feeling ill and the need to eat sugar fast but they branded me neurotic. So 1991 and i paid a private doctor to run the tests again - positive. Now diagnosed for 23 years and insulin 4 times a day, blood tests up to 15 times a day, it's a constant battle. My hba1c was 8.7 last week and I just can't control it no matter what I do, it doesn't help that the nurses treat me like I'm not even trying. That's the worst bit. I want to get my hba1c below 8 as it's been over for 2 years now, nothing seems to work. However the diabetologist told me he doesn't want me less than 7 or 7.5 as I get hypos too. You can't win!

 

[DunePlodder]

I would say:
80% from the internet including this forum.
15% from books.
Apart from the original diagnosis, only 5% from hospital/Doctors & some of this misleading..

 

[Susan1991]

Aw thank you, gosh everyone's so nice on here! Why didn't I find you sooner