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Annoyed and Confused

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EmmaLeona

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Hi, I'm hoping someone on here can give me some answers as my Dr is completely useless

I was diagnosed in September after doing blood tests to find out why I cant seem to lose weight although I did cardio and weightlifting 6x a week, ate really healthy, cooked from scratch, very limited alcohol and don't have much of a sweet tooth.

I'm only 26, have no family history of diabetes and have no associated problems with eyesight or my feet.

My fasting blood came back as 15, and the dietician told me to eat more fruit, drink diet drinks and fruit juice and cut down to semi skimmed milk!!!

I was started on Gliclazide once per day, which did absolutely nothing to bring my sugars down ( stayed roughly at 15-22 no matter what I ate), after a month it went up to twice a day, again did nothing apart from giving me chronic stomach upset and generally made me feel like **** - Dr didn't really care and put me up to 3x a day which left me in bed for an entire weekend and signed off work for a fortnight, again this was doing nothing for my sugars which were creeping up towards 25+

Dr decided to put me on Metformin along with the Gliclazide which again did nothing, so I went to a nutritionist who told me to cut out gluten and start taking chromium (as by this point I had stopped taking the prescribed meds as they literally did nothing), making these changes started to bringing my sugars down to 14-18 but seems to plateaued now.

My hba1c have also started to go back up ( 12%, 10%, 11%) and the dr doesn't seem to bothered, all he did was ask me if I wanted to try yet more tabs which I declined and finally after 8 months referred me to the hospital clinic - he has told me I am type 1.5 and that my sugars are 'uncontrollable' but I am wondering if it sounds like insulin could be needed because nothing's worked so far? Also as I mentioned I used to go to the gym a lot but I keep hearing conflicting results about excerising with such high sugar levels?

Any info would be greatly appreciated as I am really starting to stress about the lack of help Ive received and I'm constantly worrying about side effects.
 
Hi @EmmaLeona, I'm inviting @Daibell, @LucySW and @Kristin251 as T!.5/LADAs who all have experience of what this version of T1 is like.

You should be on Insulin now, given your bg levels. If I was you I would go back to the clinic ASAP and demand that they provide that to you. That's really not very clever of any of the doctors that you have seen.

Meanwhile, I'd hold off the gym a little until you've got your levels back down as exercising with high bg can increase the risk of ketones.

This is a little more about T1.5, if you are interested: www.bit.ly/LADA_T1
 
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Hi. Yes, you need to start insulin now. The GP is negligent. If the surgery won't do anything complain and/or go to A&E. The GP is ignoring NICE Diabetes guidance to docs. Any HBA1c over about 7.5% already treated with tablets needs to move to insulin. You can download the NICE guidance from the web. I am a little surprised that you have excess weight as a LADA will normally be the opposite as the body will be burning fat for energy. Can you let us know what you mean by a healthy diet? It should be a low-carb diet. BTW removing gluten unless you are coleac is unnecessary and chromium can help but is know to have some side-effects so is not standard treatment.
 
Who did you see at the hospital, was it a consultant endocrinologist? Did they make the diagnosis of 1.5 based on blood results beyond your Hba1c (i.e. Have you had a GAD test and C-peptide test)?
 
I'm not a medical expert - but I know my exercising. I've seen this before. If you are are aiming to loose weight and have that focus in your weight training AND you do that six times a day - there's a fair chance you have been over training. Stop. Rest, cut down to 4 times a week and see what happens and then take one week in six off from the gym and just do something light like walking. (The same applies to people who are trying to put on muscle. They might train differently, but if they over train, they will also stop growing. You have to be brave to cut down your work outs when you want to change your body shape, but it works. (40 years of training under my belt and even now, I see big big people who are incredibly strong but have arms smaller than my teen age daughters - they over train - but who am I to tell them that less is more. You have to be brave to cut back, you have to be braver still to tell a big guy to cut back too.
As I said, I'm not medically qualified and what I have just said, but it will not hurt to take a short break every now and then. The worst that can happen is that you go back to the gym after your week off - refreshed and eager to keep going.
Good luck. (Type 2, Oct 15, metformin and exercise)
 
Thanks for the replies guys

@Sean01 - Il def keep that in mind when I can start training again!!

@catapillar - I haven't actually been, was referred in March as urgent but the hospital consultant thought otherwise and bumped me back down to routine so my first app is 2mrw morning. It was my GP who diagnosed me as 1.5 when none of the meds worked, as far as I know I had a GAD in Dec which came back clear, haven't had a c-peptide test yet.

@Daibell - my diet mainly consists of fresh meat, fish, veg, yoghurt, nuts, eggs. Very little processed food or sugar at all. All of my excess weight is carried in my stomach so I went gluten free to try and see if any inflammation went down which it did but again seems to plateaued. I did mention the 7.5% cut off for insulin and he said every patient is different and he doesn't go by that.

@tim2000s I had a pretty good idea that I need insulin and have thought it for a while know, my GP seemed happy just to up my meds dosage and send me to the hospital when he realised things were getting a lot worse.

Thanks again, all this info is much appreciated!!!
 
Hi, sorry you're so fed up. Fruit juice is a suggested hypo cure and contains high amounts of carbs. fruit also contains carbs, so I am surprised they suggested that to you. You could ask your Dr to send you on a course to help with carb counting, though it does sound like he needs it more than you . I hope you soon find the answer x
 
Grumpy ole thing said:
Hi, sorry you're so fed up. Fruit juice is a suggested hypo cure and contains high amounts of carbs. fruit also contains carbs, so I am surprised they suggested that to you. You could ask your Dr to send you on a course to help with carb counting, though it does sound like he needs it more than you . I hope you soon find the answer x
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I eyes nearly fell out of my head when I rad that about fruit juice. Please @EmmaLeona stay far away from juice, if you are not on insulin. Even myself being on insulin, I would never drink it.
 
EmmaLeona said:
@catapillar - I haven't actually been, was referred in March as urgent but the hospital consultant thought otherwise and bumped me back down to routine so my first app is 2mrw morning. It was my GP who diagnosed me as 1.5 when none of the meds worked, as far as I know I had a GAD in Dec which came back clear, haven't had a c-peptide test yet.
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If youre GAD negative & in the absence of classic 1.5 presentation, I'm not really sure where the idea of 1.5 would have come from - a "classic" 1.5 would have untried for weight loss and a slow onset to requiring insulin, you sort of sound like the opposite of that (although to be fair, I'm not sure if there is a classic 1.5 & I certainly wouldn't expect a GP to be capable of diagnosing it). It sounds like you are young fit & active and you have gone quite quickly from diagnosis to requiring insulin, which would make you a pretty atypical type 2 & it could be that your GP wants more specialist input before going to insulin? Have you asked your GP about insulin, if you have previously declined tablets he might be worried you wouldn't be open to the idea. Do you mind me asking how much you weigh or what your BMI is? Was your thyroid checked when looking at the weight loss issue?

While you wait to see the consultant, I would be thinking about reducing carbs to control blood sugar - remember that all carbs (strong contenders being pasta, cereals, rice, bread, root vegetables & fruit) are turned to sugar on digestion, have a look around the low carb section - keeping hydrated, making sure I could test my blood sugar and ketones & making sure I didn't do intense exercise if my blood sugar was over 12.

Hope you get some good advice from the consultant. Good luck & of course come back to keep us updated - remember, any queries you've not even thought of yet, there's bound to be someone on here who has been through similar & can offer their experience.
 
Hi

Just thought I'd post a quick update - the consultant thinks there is a hormonal imbalance somewhere which has prevented any weight loss, so she took a ton of blood samples and im waiting to hear back. Neither her or the nurse have a clue what type I am ( apparently the gp should have referred me straight away, instead of prescribing me any meds) so they're hoping these blood tests shed some light - all my GAD and antibody tests have been redone too just to make sure.

I've been put on Forxiga 10mg once a day to see if that works - I now have a weekly appointment with a diabetic nurse to make sure everythings under control, but I am feeling alot better about things - hopefully I'll have some answers sooner rather than later.
 
Hi @EmmaLeona, glad they are now in action and hope you get answers soon.
 
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