Support needed

[s.sollis]

@s.sollis Have you been given C-Peptide or Autoantibody tests? If not I'd suggest that you ask for these as soon as possible. the combination of the two should make it much clearer as to what type of diabetes you have.

I haven't yet, I will mention it to my nurse. Thank you

 

[s.sollis]

Hi sollis,
Congrats on starting a thread. Your experiences with food is probably a lot of your problems. You have to tackle the binge eating/non eating. Im a bit like that too. I can be good for weeks but then really really binge. The trouble with binge eating is the glucose will stay in your blood for a long time while the insulin tries to tackle it. I can range from my normal 1300 calories to 5000 calories a day when I binge. Im trying to lose weight but have become a yo yo lose 8lb gain it back in a day. I am trying really hard not to do this and so far seem to be wining. (down 10lb between Jan/feb). The key to not bingeing is to not starve. The too few calories trigger your must eat binge fest. Monitoring my carbohydrates is definately one of the best ways Ive found not to binge, I have cut out potatoes, rice, and any wheat. This is my personal choice. I am seeing a NHS dietician but they are still selling the idea of the well being plate and recommending 1/4 of the plate needs to be carbohydrates. Once you get your head around low carbohydrates it does get easier. Try to jazz up your food with spices. Have low carb vegs to fill you up. I cook all my meals from scratch and have cut out any manufactured package meals. The spices are the key to making your food not taste boring. Always have prepared food ready for those days that you do not feel like cooking. I have standby emergency soup in my fridge that I can just pour into a bowl and nuke to heat. Try to start meal planning. This helped me alot. If you know what you are going to eat you are less likely to binge. Once your food intake is steady your blood glucose may steady. I also recommend keeping a food diary and stick with it even you have binged that day. It helps track how often you are doing it so you can think about why you do it. This is how I found out I binge with carbs and starvation. I could see the pattern. I use myfitnesspal to track my foods and the graphs to see when I go over my limits. I saw that before I binge my calories dropped. Feel free to pm me any time.

Thank you for the advice and kind words, I've been food shopping today and have bought loads of veg. I usually buy crisps and snacks but they didn't go in my trolley today. Also stocked up on loads of water. I've got myself a notebook to record everything I eat/ insulin and blood sugar readings.

 

[s.sollis]

Have another {{{{{hug}}}}}, s.sollis, my young friend.

You'll find that the vast majority of people on here will be very friendly towards you, and can be counted on to offer you support ... be that moral support.

As has already been stated, noblehead has offered two very worthwhile websites for you to take a look at, and as tim2000s has indicated, C-peptide and Autoantibody tests are what are required. It's the ONLY way to be absolutely sure whether you're a type 1 or a type 2. To be frank with you ... if you don't mind me changing my name for a second ... I'm more than surprised that your DSN (Diabetes Specialist Nurse) hasn't requested that these tests be carried out.

Hi I'm surprised too, I feel that every doctor or nurse I see finds me a challenge and leaves me hanging. By the way Frank is a good name lol. Thank you for your support

 

[s.sollis]

Hello @s.sollis wow there is some excellent information on your thread. It sounds as though you could do with a doctors appointment where you explain the problem of the hospital saying you are type 1 and dnurse type 2 and requesting the two tests c-peptide and autoantibody . What do you think?

This is what I am going to ask when I can get an appointment with my doctor, will probably be the week after next.

 

[s.sollis]

I spoke to my dsn this evening and she is organizing a urine test that will confirm if I'm type 1 or type 2.

 

[mo53]

Hello @s.sollis . Brilliant! That's really good news. Did she say when?

 

[s.sollis]

Hello @s.sollis . Brilliant! That's really good news. Did she say when?

She's phoning again Monday to explain what I need to do as it's not like a normal urine test. She is going to post the stuff out then. So depending how long it takes I should have answers soon.

 

[mo53]

Excellent! That's really good news! Well done!

 

[s.sollis]

Excellent! That's really good news! Well done!

Thank you

 

[Charles Robin]

Hi S.sollis, I would advise you to treat your healthcare team as just one string to your bow. Remember, our taxes pay their salaries, they work for us. I think that a lot of diabetes doctors and nurses (not all though) treat their patients as misbehaving children. Therefore, when someone like you comes along, they react the same. When I say someone like you, I mean someone who is actively engaging in looking to manage their diabetes.

You have already used the magic words in your previous comments- low carb. In my opinion, it's the holy grail of diabetes management, whether type 1 or type 2. I would advise you to build on the solid foundation you have set and research further. Read Dr Richard Bernstein's complete diabetes solution. The title really is no understatement. I have never come across a more in depth diabetes resource. The man has lived with type 1 himself for most of his life. He is now in his 80s, so he really does know what he's doing. Dr Troy Stapleton on YouTube is another good port of call. www.lowcarbdiabetic.co.uk is great for recipes too.

My own relationship with my health team is this: I have politely told them that I am going to eat a low carbohydrate diet, and that I won't be dissuaded from this under any circumstances. Thankfully, my specialist is open to working with me, providing I show good results regarding my blood sugars. It goes against what she advises, but she is willing to work with the evidence, which she has been impressed with so far. If you were to adopt low carbohydrate fully, your health team will probably try to dissuade you. If it makes your blood sugars well controlled, make sure you are testing often so you have hard data to back you up. And regarding insulin doses, don't be afraid to experiment. However, make small changes gradually and again, test regularly to avoid the risk of undetected hypos.

Hope that helps, and best of luck.

 

[LucySW]

Hi, my bmi is 29 so I'm over weight, but I've lost 4 and half stone since 2014 without trying.

Weight loss points to late-onset Type 1, which often called LADA/Type 1.5.

You'll have to be assertive. It's you, not the nurse, who is going to deteriorate if you're treated as aType 2, or get BG damage if they tell you to run your BG too high.

Read up all about 1.5/LADA, read around on the 1.5 sub-forum on here, then aim to get your BG down. I suggest you read Dr Bernstein.

Dr Bernstein website: http://www.diabetes-book.com/

His book: http://www.amazon.co.uk/gp/aw/d/031...s+solution&dpPl=1&dpID=51NMUWSvsEL&ref=plSrch

The Dr Bernstein University YouTube playlist: https://m.youtube.com/playlist?list=PLs_TA02I6IvV6-1s2pL4BPhvMo0Ck_lcY

Loads of us have already been on this 1.5 journey. See @Ian DP's story and mine.

@Ian DP: http://www.diabetes.co.uk/forum/threads/can-i-prove-the-drs-wrong.53061/

Mine: http://www.diabetes.co.uk/forum/threads/an-older-and-wiser-new-lada.70099/

You will need to be your own best carer, because LADA is only just beginning to emerge on the clinical radar. Take possession of your health. Good luck!

 

[s.sollis]

Hi S.sollis, I would advise you to treat your healthcare team as just one string to your bow. Remember, our taxes pay their salaries, they work for us. I think that a lot of diabetes doctors and nurses (not all though) treat their patients as misbehaving children. Therefore, when someone like you comes along, they react the same. When I say someone like you, I mean someone who is actively engaging in looking to manage their diabetes.

You have already used the magic words in your previous comments- low carb. In my opinion, it's the holy grail of diabetes management, whether type 1 or type 2. I would advise you to build on the solid foundation you have set and research further. Read Dr Richard Bernstein's complete diabetes solution. The title really is no understatement. I have never come across a more in depth diabetes resource. The man has lived with type 1 himself for most of his life. He is now in his 80s, so he really does know what he's doing. Dr Troy Stapleton on YouTube is another good port of call. www.lowcarbdiabetic.co.uk is great for recipes too.

My own relationship with my health team is this: I have politely told them that I am going to eat a low carbohydrate diet, and that I won't be dissuaded from this under any circumstances. Thankfully, my specialist is open to working with me, providing I show good results regarding my blood sugars. It goes against what she advises, but she is willing to work with the evidence, which she has been impressed with so far. If you were to adopt low carbohydrate fully, your health team will probably try to dissuade you. If it makes your blood sugars well controlled, make sure you are testing often so you have hard data to back you up. And regarding insulin doses, don't be afraid to experiment. However, make small changes gradually and again, test regularly to avoid the risk of undetected hypos.

Hope that helps, and best of luck.

Thank you for support and kind words. When I told my nurse I was going to try low carb she said anyone who does that is ill!!! Then promptly told me to buy the carbs and cals book. I have just sent off a food diary, so God knows what she says about that.

 

[s.sollis]

Weight loss points to LADA/Type 1.5, i.e. late-onset, rather more gradual T 1.

You'll have to be assertive. It's you who is going to get the complications unless you sort your care out, not the nurse.

Read up all about 1.5, read around on the 1.5 sub-forum on here, then aim to get your BG down. I suggest you read Dr Bernstein.

Dr Bernstein website: http://www.diabetes-book.com/

His book: http://www.amazon.co.uk/gp/aw/d/0316182699/ref=mp_s_a_1_1?qid=1439482271&sr=1-1&pi=AC_SX110_SY165&keywords=dr+bernstein's+diabetes+solution&dpPl=1&dpID=51NMUWSvsEL&ref=plSrch

The Dr Bernstein University YouTube playlist: https://m.youtube.com/playlist?list=PLs_TA02I6IvV6-1s2pL4BPhvMo0Ck_lcY

Loads of us have already been on this 1.5 journey. See @Ian DP's story and mine.

@Ian DP: http://www.diabetes.co.uk/forum/threads/can-i-prove-the-drs-wrong.53061/

Mine: http://www.diabetes.co.uk/forum/threads/an-older-and-wiser-new-lada.70099/

You will need to be your own best carer, because LADA is only just beginning to emerge on the clinical radar. Take possession of your health. Good luck!

Thank you for all these links, I've never heard of type 1.5, so I will be sure to read up on it.

 

[Kyi]

Morning Sollis Hope you are feeling great today. I see you are getting your urine tests sorted. Congrats on taking your diabetes to the next level and start monitoring for yourself. I have started measuring my blood sugars yesterday. The kit I ordered came. Been testing over pre food and post food.I am going to do wake up and sleep BG as well. I already measure my food as you know but am now adding times to it ie when I eat. I am starting to keep a log of when I take my tablets too so that I have lots of evidence of what my BS do through out the day. Yes its a lot of measuring but I am only going to do this for a month max or until my fingers dont like the tests lol and then decide my next step.

 

[LucySW]

Thank you for all these links, I've never heard of type 1.5, so I will be sure to read up on it.

You're welcome. The important thing is that you treat yourself as Type 1 (of whatever description) and not allow yourself to be treated as a Type 2. You need full basal/bolus insulin and not to mess with tablets.

Here's an overview article about Type 1.5 (often called LADA). https://en.m.wikipedia.org/wiki/Latent_autoimmune_diabetes_of_adults

There's a sub-forum devoted to it on here. Just go to Browse/Diabetes discussions.