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Still confused..

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sally43

Well-Known Member
Hi Guys,

I know you regulars will be able to reassure me with a couple of things.:D

Our son is still really struggling with all this - early days I know though. It seems that on the days he is really good and avoids the carbs and walks more he seems to get mid to high teen glucose levels. But on the days he has been 'bad' - we have had family birthday or had pasta bake for dinner or sweets and pudding for a treat - his levels were down to low teens. In fact this past week while I have been 'out of action' (recovering from back surgery) and all meals have gone a bit to pot the levels have been 10, 11, 12. Does this mean that the metformin is working and if we were really good the levels would drop further?

He is still feeling pretty rubbish most of the time. He has had blurry vision a few times, been lethargic and moaning about pains in his hands and arm. Should he be contacting the Diabetic Nurse? He has an appointment with the doc mid April. Should we be doing something?

By the way, Hubby saw the practice nurse recently. He'd lost 9kgs which was brilliant but she wasn't impressed with the fact the Diabetic Nurse at the hospital had given him a monitor when they gave David one! Apparently Hubby won't get free lancets or strips! He doesn't need them - in her opinion! 🙂

Thank you for letting me whine.... talking of which; I'm not the diabetic and off my painkillers so I may have a glass! 🙂
 
Just been browsing the other posts and realise how I really don't have that much to complain about! Talk about getting things into perspective.

Thank you for letting me have a 'pity party'. 😱
 
hi Sally sorry to hear that your son is struggling. If he is Type 2 I'm afraid that I'm not much use at giving advice. However I would strongly suggest that he contacts his DSN for advice about these problems. I hope that you enjoy your wine🙂
 
Thanks for the message. Guess I was on a bit of a low. Just recovering from a hospital stay so I guess things got on top of me. Seems they may have fixed my back so I should be looking to the positive a bit more. The Nurse seems to be the best bet. Guess I wasn't really thinking straight earlier.

Thanks again for the support. Carers need support too I suppose. 🙂
 
Sally - don't worry about having a moan - we all do it from time to time.

Did the Drs do tests to confirm your son's type ? When you first posted there seemed to be some confusion as he was displaying symptoms of both. Having the right diagnosis will help. I would see if you can have a chat with his DSN - when you exercise the body releases glucose for energy - but you need sufficient insulin to make use of it, if there isn't levels will rise - it sounds like that may be what is happening - though I am not a medic and its just a guess.
 
Hi Margie,

You are correct about the diagnosis. The only diagnosis he has had was from the visit to the nurse. I'm sure she knows what she is talking about but there was still a bit of a query. Perhaps the next appointment will confirm things. I can't help but have feeling that things are not quite as straight forward as they seem. Where have I heard THAT before? Lol

We shall persevere and try to get a good selection of data and notes for the professionals to be able to help. Then we will contact the DSN on Monday!

Thanks again.
 
You are correct about the diagnosis. The only diagnosis he has had was from the visit to the nurse. I'm sure she knows what she is talking about
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I wouldn't bank on that 🙄
Lets just say some are not as good as think they are.
I'm not a medic either but wouldn't mind betting your son is not a type 2 diabetic.
If it were me with numbers like that I would be asking for an urgent referal to a DSN and a consultant at the hospital.
 
Hummmm - what about this blood test the DSN at the hosp said he'd be having 'in a few weeks' time' ? When IS that?

I would hope they will be testing for both GAD65 antibodies and C-peptide production. Google them LOL - you'll understand why I say this after you read up on them.

But here's one small thing you can do for him. Go into Boots (or wherever) and buy a pot of 'Ketone testing strips' - usually either Ketostix or Ketur-Test. These are to test pee with to see if he has ketones. If he's eating his food including carbs in normal amounts and he has got em - if he's T2 he shouldn't have em. A pot of strips is around ?5 to ?6.
 
Hi Sally

Personally wouldn't wait til April to see someone about this - those numbers are too high IMHO and even a few weeks could make a difference long term (sorry).

Don't understand why, if your OH and your son are both T2, one needs to test and has been given a meter and the other has been told not to? either they both do or neither of them do:confused:

If you can get your son to test for Ketones might give a bit more imformation to pester DSN with, as T1s are more likely to get Ketones than T2. However, the instructions for my daughters new meter imply you can have ketones occassionally with T2 and that Ketones should be tested for at a level of 14+.

I still think your son might be T1 but I'm no DSN. Good luck getting this sorted out Xx
 
I frankly do too MM. Which is precisely why I suggested testing for ketones.

I'm utterly gobsmacked that a boy of his age should be diagnosed as T2 without giving him the necessary tests? ie the GAD65 and C-peptide blood tests I mentioned.

In fact I'm pretty disgusted really TBH.

But I don't know what to suggest to actually do about it.
 
Hmmmmm.

http://www.nhs.uk/Livewell/Diabetes/Pages/Diabetesandyourchild.aspx

Okay - we know most kids present with T1 and are very ill indeed when they do. But why isn't YOUR son getting this treatment?

Nowhere does it say 'this is only T1 kids'. Surely whatever type it is they should ALL be in the care of a specialist paediatric team?

What tests has your son actually had so far?
 
trophywench said:
Nowhere does it say 'this is only T1 kids'. Surely whatever type it is they should ALL be in the care of a specialist paediatric team?

What tests has your son actually had so far?
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I went back and looked at the thread when Sally joined and her son is an adult. Saying that I would think that in cases where Drs are unsure as to a person's type they should be referred to the local clinic for tests.

Sally there are a number of members who have been diagnosed as Type 2 only to be rediagnosed as Type 1. The tests the others have mentioned will help the Drs to confirm or amend the diagnosis. You should certainly get your son to speak to his DSN.
 
Oh sorry, I see 'Parent' and automatically think 'child' .....

Same tests though, plus an Oral Glucose Tolerance test for adults.
 
Hi All,

Thanks for the support and advice. Apologies for the confusion over the fact I'm posting yet my son is in his 20s! He is severely dyslexic and has lots of issues with relaying information. So it's much easier, and he's very happy, for me to be the go between!

So, I am now feeling confused and a bit silly.

I have spoken to the DSN this morning. Seems I may not have been helping him in the correct way. He should be eating carbs with every meal. And not eating sugar. I thought we were doing that; but bacon (grilled) and eggs (scrambled) for breakfast is not good enough - too much fat! :( Also, birthday cake (youngest daughter) this week shouldn't have been allowed really. It was only a small bit and it WAS a treat! She was quite sympathetic to the fact that life has been fraught here due to me being in hospital and everyone having to fend for themselves- which they did admirably! After giving her the low down on the sugar levels she did say she would try and fit him in before the beginning of April to try and review what is going on.


So, being positive now we have decided to write down exactly what he eats and what he does and then we can get a good overview. I think I had better go back to reading and concentrating on what I am actually reading! We also took your advice about the ketone test. The test was negative. So I guess that's good?

Thanks for your support.
 
Just checked the blood test request sheet. It asks for anti GAD65, Islet cells antibodies?, lipid profile, HbA1C, glucose, TFT and Cortisol! Phew! 😱 Oh and U&E, liver profile, bone profile and full blood count! :D

I guess the problem is that nothing is straight forward and no case is text book. :confused:
 
Being over 50 and fat, it was assumed at diagnosis that I was t2, I was luckier than some because it only took six months of nagging to persuade them to give me the GAD and c-peptide tests that showed I'm actually t1.5. Apparently it can take years.

I reckon that whatever type of diabetes your son has, he really should be seen by his doctor before any diagnosis is confirmed, it shouldn't be up to a nurse to diagnose him, even if she's right.
 
sally43 said:
Just checked the blood test request sheet. It asks for anti GAD65, Islet cells antibodies?, lipid profile, HbA1C, glucose, TFT and Cortisol! Phew! 😱 Oh and U&E, liver profile, bone profile and full blood count! :D

I guess the problem is that nothing is straight forward and no case is text book. :confused:
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Sounds like they are given him the full works. I think I've had most of those done to me at some point or another.

The GAD65, Islet cell antibodies are primarily used to determine Type 1 (auto-immune diabetes) - so those are important ones. Not sure what bone profile is.
 
It's what it says! LOL

tells you if you've got osteoporosis amongst other things, but also shows up LACK of certain things, think if you are anaemic is one of them but can't recall now.

Cortisol test is excellent, that's one of the things that rams your BG up - it's produced when there's extra adrenalin kicking about - fight or flight mechanism, stress blah blah, is also a by-product of taking steroids in any format; lack of it is also a problem.

TFT, Thyroid function, LFT, liver function, U&E - Urea and Elctrolytes is kidneys, FBC again - is your blood otherwise healthy overall.

So a Full Service and MOT !

Just a note for anyone having blood tests - drink as much water (a pint or even more) in the half hour or so prior to the test - it really helps pump your veins up so they can find em easier and don't have to go digging - just thinking Sally, you mentioned needle phobia so if you can make it any less awful for him by getting him to do that, it's a simple thing to do.
 
Thanks for the advice about the water! David will be pleased to hear it! Glad to know he's getting the full works on the blood too. Maybe we can get things straight now - or should that be straighter? 🙂
 
I have spoken to the DSN this morning. Seems I may not have been helping him in the correct way. He should be eating carbs with every meal. And not eating sugar.
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Does DSN stand for dumb silly nurse? 🙄
Carbs turn into sugar, it just depends at what speed (GI & GL)
An all round reduction in carbs is needed to help with lowering blood sugars.

If it were me I would ask to see said DSN's qualifications for giving dietary advice 😱
 
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