Feeling confused about all this

[sally43]

Hi,

This time last week I was in a blind panic after my son - a grown man, I admit - had been called to A&E for sky high blood sugars. He was diagnosed as diabetic. They weren't sure if it was T1 or T2. (See, I have been reading up and notice how it is written!) Wait for the appointment to see the endocrinologist, they said. Wait a week to ten days, they said. We are waiting. He has now seen the GP regarding the blood test. His liver count levels were 10 points above normal. Does he drink he was asked? My son asked if he meant fizzy sugary drink! 🙂 He only drinks the odd pint of beer.

So, here I am - waiting! I am at a bit of a loss trying to understand why everything was so urgent and now there is nothing. There's no support - apart from you guys. Nothing.

I have been reading some of the things you have kindly suggested but it's dificult to know what to do without a firm diagnosis. I am trying to support our son but getting increasingly frustrated about what is - or isn't! - going on. He is dyslexic so getting reports from him about things that docs said is tricky.

My husband was diagnosed T2 recently and, after having read things on this site, does not appear to be getting the information and support from our GP practice that he should be! It seems to have been a case of, 'take Metformin twice a day and eat less.'

The only good thing about all this is that the whole family are going to benefit from the new regime I feel coming on! 🙂

Thanks for letting me moan.

 

[Northerner]

Hi Sally, very sorry to hear that you are still being left in the dark. Does your son have a meter so that he can test his own levels? A diagnosis of diabetes can be difficult at times, especially when things are not so clear cut. I got by for about two years with what I know now to be quite obvious symptoms, and there were occasions during that time which were probably quite dangerous, but I recovered without knowing what was really wrong. It was only when I got so ill that I could barely walk, talk, hear or think that I was finally diagnosed.

What I'm trying to say is that your son may have had very high blood sugar levels but not with other accompanying danger factors, and he has come through the crisis so he needs to see someone with specialist knowledge to determine what is going on. The GP should be explaining this, if it is indeed the case - of course I'm just speculating.

Would it be possible to book another appointment to discuss your concerns and get the GP to be honest about whe he knows or doesn't know? Many GPs do not encounter out-of-the-ordinary presentations of potential diabetes, so don't have the knowledge to give you the answers.

I hope you can get some clarification soon.

 

[Andy HB]

If your son is overweight and is T2, with fingers crossed, the elevated liver count levels may be due to having a fatty liver like me (it need not be alcohol induced ... mine wasn't).

The good news is that with a modified diet (cutting out a lot of the saturated fat and generally eating more regularly and healthily) the liver can be corrected over time .... just see my "Finally" thread in the Off Subject for an example of this.

Getting a regular exercise regime up and running will also help matters greatly. My daily walk has done wonders for me too.

Good luck!

Andy 🙂

 

[Mark T]

Moan away. It's quite silly in some ways.

Because I was younger then the perceived typical Type 2 (30's rather then 50's) and wasn't obese at diagnosis, my GP wasn't sure if I was a T2 or a T1. I hadn't been rushed into A&E - I'd just been caught on a routine blood test. They set me off with a meter and some diet advice and referred me to the consultant.

It sounds like your getting the same sort of thing I did, with just getting a left to get on with it with not so much support. Once I got into the consultants list (took a couple of weeks) then my support did improve - but here is still best for me.

Since your son is dyslexic (my brother in law is), I would wonder if it is better for one or you to go in with him and act as the note taker/secretary.

Hopefully you get some answer too soon!

Did they give either your son or your husband a self-test kit for monitoring blood glucose. If they haven't it might be worth asking about it.

 

[everydayupsanddowns]

Hi Sally

Sorry to hear of your son's (un)diagnosis. Hope you get some good firm information soon.

While you are waiting for clarity, and given that your son had very high BG levels, it might be worth cutting right back on carbs. Since it looks like he is currently struggling to metabolise them for some reason there is little point carrying on shovelling them in only for the energy they provide to slosh around in the bloodstream?

This page from AlanS's blog might help: What to eat at first

M

 

[sally43]

Thanks for this reassurance and support. I appreciate GP does stand for General Practitioner and we cannot expect them to know all the answers.🙂

Our son has obviously weathered the storm well for goodness knows how long. Bits of the puzzle are now beginning to fall into place though. His tiredness, weight loss - not that obvious on a big guy though, the need for surgary drinks, aches and pains etc. But, I guess, sometimes a little knowledge is a dangerous thing. And an over active imagination is worse!

I will try to be patient and concentrate on looking into the support hubby should be getting. At least we know he is T2. Stress levels are very high here. My mother in law is very poorly, hubby's work is stressful. I suppose none of these things help his case.

Time to take a more positive attitude I think. After all, I am not the one who has diabetes so shouldn't be feeling sorry for myself 😱

Thanks again for your help.

 

[Northerner]

Hi Sally, have you read the following:

What you should expect from the NHS in terms of support
http://www.diabetes.org.uk/Guide-to..._diabetes/diabetes_care_and_you/From_the_NHS/

 

[Copepod]

As others have said, while a delay, especially as it's longer than the "week to ten days" that he was told, is very frustrating, it's not necessary a cause for concern. Unfortunately, particularly at this time of year, illness among both staff and patients means that clinic appointments don't run as smoothly as usual.

Also, with any unusual presentation - a young adult is relatively unusual - so getting specialist input is vital.

I was 30 years old, fit, active, normal weight, diagnosed at a SCUBA diving medical in NZ and clinic really didn't know what to do with me, once I got back to UK! It 1996, before internet was easily available, so it wasn't until I got a photocopied article from a friend's mother, a pharmacist in Tasmania, that I discovered basal bolus insulin regime (also called MDI). However, if my parents had tried to intervene, I'd have been livid! I was staying there are after working overseas for a year, and thoroughly frustrated by not being allowed to cook my own food, as mum was trying to feed dad and semi house trained 19 year old male cousin, both of whom objected to any spicy food, cheese etc, which meant very boring food, only relieved when a family friend, a doctor from Pakistan brought round some lovely spicy food 🙂

In the meantime, limiting carbohydrate intake can't help - eg diet soft drinks instead of sugary drinks. And limiting alcohol intake (even from very low level) is also wise given abnormal liver results.

Hope he gets his appointment soon - and life begins to get clearer. As he's over 18 years (I assume that's what you mean by "a grown man"), you'll need his permission to come to appointments with him, and medics won't break his confidence by talking with you without his persmission - frustrating for a mother, I know, but that's the way it is. Hope he mentions his dyslexia to doctors / nurses / dieticians etc he meets, so that they can provide appropriate materials etc.

 

[sally43]

Our son is over 18 - 26 now! So we are very conscious of the need for him to handle his own affairs but for us to be there at important meetings. He's very good about all this and is happy for either my husband or I to tag along.
With David, being a typical dyslexic, it's not what you teach him; it's how you do it!

All your posts have been very helpful - thank you.

 

[imtrying]

Good luck Sally. I hope you manage to get a diagnosis sooner rather than later. And all you can do, is be there for your son - he'll appreciate that the most, as well as a bit of normality when the rest of his world gets turned upside down.