• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Assistance needed?

Sometimes people - doctors - can't see the Wood for the trees. - In the case of your doctor, I wonder if the diagnosis threshold has been set high by the practice in order to save money? Call me cynical, but it wouldn't be the first time something like that has happened.


Sent from the Diabetes Forum App
 
OGGT in 5 hours and I cannot sleep..

I'm going to have to direct them every step of the way so glad I did my Internet research. They don't know how to do an OGTT... And because they are only drawing blood at the 2 hour mark (first website GP found on google only mentioned 2hour figures) I am going to track BG every half hour to make a nice graph. Not that anyone is going to care about my readings but...


Sent from the Diabetes Forum App
 
Have you actually asked your GP to be sent to a diabetic consultant for him to look at your records of highs and your blood tests?

I would ask and just say that you would like to have a diabetic consultant to review your bloods and recordings of highs.. If GP says "no"- say that you are requesting this as a "second medical opinion" that you are entitled to have...

Good luck.
 
There is absolutely no way he's going to send me to a diabetes consultant if he smirks and laughs off the notion of me even having diabetes. I have asked, but received no answer. I believe he would be upset/offended if I insist on seeing someone else. He thinks a lot of me intellectually and skills-wise (he's asked for my help to run some community workshops) but still thinks, affectionately, that I am a nutcase.

I'm In the office now, with a headache... They are definitely only doing a 2 hour draw so I have a full pot of test strips

Could you imagine if I didn't do my Internet research? I had to tell them Lucozade Original could apparently be used, then ask for a measuring cup to be found as they didn't know it had to be 75g I've been told I can go for a walk but hardly think that will lead to accurate results >_>

I am still confused as to why bread is so significantly worse than sugar for me though. I wonder if it's in my head sometimes until I check my readings again. No. Over 11 definitely ain't right.

I'd rather just work out what type it is and how I fix it rather than beating around the bush but got to let them go at their pace I suppose. I've already tried altering my diet and taken up more exercise classes. I'm wondering if medication will give my pancreas a helping hand. I keep saying it but I'm 20, and I'd like to get perhaps some 40 odd years more use out of it please...


Sent from the Diabetes Forum App
 
It's the same with me little wolf I can tolerate sugar way better than carbs, I think it's because sugar spikes but goes down just as quick whereas carbs take longer and are harder for the body to breakdown so when ur insulin deficient like me it can deal with little bursts but not long drawn out processes.

I had ice cream the other week and got 5.6 when I tested 2hrs later... Then a couple of days later I had a small amount of chips and 2hrs later got 14.4!!! Which is a massive difference.....


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.
 
You're probably right but I don't know how I'll explain that to them.

I got so tired and was so busy peeing I only got in a test at the 30 minute mark (10.6) and toward the end (8)

Ok they are definitely going to think I'm a time waster now. I don't even think there's a point going back until I wake up at 14.something every morning

Want the earth to swallow me up right now. Itd be so easy if I could just cut out sweets and keep the staple carby stuff. I know I shouldn't complain.. Everyone else has to do the diet thing. I just thought after I got over my anorexia unlearned all my food anxiety I wouldnt have to be restrictive again.

Thank you everyone for your messages of support and sharing your own stories.
Elaine and Hornplayer id love you as my sisters. Brett, you're my bro.

But I'm going to bury my head in the sand now and just wait. No more testing, no more starving myself, no more obsessing. My pancreas won't make up its ******* mind what it's doing. I give up



Sent from the Diabetes Forum App
 
I think its the ketones that's important in ur case... Don't give up your monitoring as it will never do u any harm will it, being careful?

Keep an eye out for those ketones and next time u get a purple stick get urself away up to A and E I honestly think that will make someone pay attention.

Also...I know u feel like u owe ur GP some loyalty etc.. But don't jeopardise your health through a sense of loyalty....i wouldn't put urself down as a hypochondriac on the opinion of just one GP not at all and ur not the only one who is frustrated that they can't get someone to listen just because the oral and fasting tests don't show what the HCPs want them to show...I've seen a few people on here who have had that problem too and hopefully they won't give up either :-)


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.
 
You could try getting a meter that measures ketones at least then you would have something that shows the time date and what both your sugar and ketone levels are in relation to each other. I use the Optimum Exceed and find it very user friendly.

Sent from the Diabetes Forum App
 
How are things going Littlewolf? I have only just read through this thread, been away from this forum for awhile. It seems that there are quite a number of us that can have low fasting numbers, high spikes that can take ages to come back down and moderate pre=diabetic HbA1cs. I too can pass a OGTT, but two slices of bread do really bad things ! different sort of carb. With the sort of numbers that you are showing and your size / activity levels etc I would ask for a GAD and a C-peptide test. There is a very real chance that you are LADA, its onset can be gradual, it depends on how active your antibodies are at attacking your beta cells. But all the while you will get high post prandial numbers, which you need to avoid. If you really have absolutely no luck with your doctor and do not feel that you can find another one, then is there any chance that you could have those tests done privately? at least if it shows that your insulin production is really low and you have antibodies you can at least take them to an endo and ask for help. Please do not just give up on this.
 
Hi there halfpint

I'm a half-pint too at 5ft. Hehe

It really does help having your support here as like I said, I don't really get any anywhere else. You are the 5th person to suggest LADA..

On one hand the erratic readings, my size, activity etc suggest LADA

On the other hand my family history and having Polycystic Ovary Syndrome (which another one of my cousins has just been diagnosed with) seems to suggest T2

Even the highly unlikely MODY doesn't tend to have readings as high as mine spike (as far as I know) I wonder how MODY diabetics even get diagnosed if my random readings aren't diagnostically conclusive

I have still heard nothing back from the doctor.

I did approach a lab a while back about tests and they were offering HbA1c for £25 until I finally got the GP to order it. It'll cost me to get GAD, C Peptide (and possibly MODY genes?) done but it looks like I have no other choice. If it is LADA, then I'm worried. I have been sitting here watching things go downhill in less than a year and don't have the option I medication to slow it down.

Maybe I'll try explaining my situation to the guys at 111? Diabetes UK just said they were sorry to hear about my situation, best of luck and to tell then if I make any headway.

Why is it so hard to just get a hold of an endocrinologist and asking them for help directly?




Sent from the Diabetes Forum App
 
Hi LW, I should imagine there are consultants of every type out there to see if you're able to pay to go private. It really wouldn't be cheap though.

You're in a really frustrating situation. I don't know how you're coping with it! - I don't know what I'd do in your place.

You seem to have two choices.

You can assume that you do have some form of diabetes and, with a lack of any other options, continue as though you were a diet controlled T2. It may take you considerably longer to get a formal diagnosis if you're really well controlled, but at least you'll know that you're doing the best you can for yourself. - Check out the website "Marks daily apple", - if you don't already know it.

Your other option seems to be to eat whatever you like, - maybe even deliberately unhealthily, and wait to say "I told you so" to the doctor. Personally, I don't know if its worth deliberately damaging yourself, just for a diagnosis. If you have T1.5 or Mody, they'll show up eventually, no matter what you do. Keep a log of your BG readings.

Really sorry I can't tell you how to fix this one LW!


Sent from the Diabetes Forum App
 
Hi again LW. I am sure that I have read on several occasions that PCOS can (not always) be linked to hypothyroid disease - frequently Hashimotos. Guess what, often hypothyroid disease is an auto-immune disease too ! ! People with LADA do quite often get diagnosed with hypothyroid antibodies within a year or two of LADA diagnosis, also the other way around as well i.e. diagnosed with autoimmune thyroid disease followed by LADA. Obviously this is not all cases, but its fairly common. PCOS can also be an autoimmune disease. If you have one auto-immune disease, it is often found that you have others as your immune system isn't working right !

If you can afford it, get the GAD and C-peptide done. LADA is, I think!, much more common than MODY, so don't worry about that for now. If it costs £100, it could be the best £100 you have ever spent.
 
You know, the whole auto immune thing is very interesting.

I was diagnosed T2 in May, but, looking at my history, I've had symptoms since my early twenties. ( I'm 42 now. ) I'm allergic to gluten, I have asthma which developed in my late twenties, eczema which flares up whenever it feels like it, PCOS, issues with my thyroid and a very low birth weight. - All of which, I believe are linked to LADA. I've avoided carbohydrate, for various reasons for most of my life and have always felt much better for it. - Probably because I was keeping my blood sugar down without realising I was doing it. ( - the guys I worked with used to laugh and say I was a really cheap date because I would be falling over drunk after a bowl of icecream - and NO alcohol!) I often wonder (particularly when people are getting snooty about T2s !) how many of us with the diagnosis of T2, are actually LADA's without a GAD test? Doctors - particularly yours LW!, seem to know so little about Diabetes, it wouldn't surprise me.

At the moment, I'm ok with my T2 diagnosis. I may, at some point in the future, ask for a GAD test, but I don't see the point right now.


Sent from the Diabetes Forum App
 
Couldn't agree more hornplayer. I am very sensitive to gluten, definitely been feeling much better for having cut it out of my diet, apart from the very rare treat. Had a gluten test , but that was negative (as many of the are) but the gastroenterologist kept running his fingers under my antibody results for the thyroid and then said, I don't think you have a problem with gluten (i.e. not coeliac), but I think you have a problem with insulin - even though my GP at hat time didn't think so ! We've also got lots of autoimmune issues within our family, so I wouldn't be surprised to find that the tendency to get autoimmune attacks runs within families, whether its expressed as arthritis, pcos, crohns, thyroid, LADA etc. etc. the list goes on.

Getting a diagnosis is important for research though. If you are lucky, in the UK, you might get offered the GAD and C-peptide tests, but generally only if you are on the thin side. I am sure that there are many T2 s, thin, normal or over weight that are really LADA.
 
Hornplayer we are extremely similar..

I have eczema, psoriasis, urticaria, cough variant asthma and was 4lbs at birth. Geez, we could be on to something.

Halfpint I had no idea PCOS could be linked to something autoimmune. I'll have a hard time convincing anyone.

I thought the 'I told you so' moment would have been the 17mmol the day after my last office visit. Probably best not to go with that though part of me wants them to see what happens when they ignore patient's concerns not just for me but other people. I'm only one of millions perhaps who connected the dots and realised there was something wrong (or seen connections between diabetes and other illnesses) but just get dismissed.


What the hell are we going to do to change this ignorance for the sake of others worldwide. How come everyone here knows more than the GPs or even the diabetic nurse? How come GPs are reading stuff about diabetes off of google and admitting to the patient they don't actually understand what they just read? I mean, something is really, really disturbingly wrong here right?

In the meantime I am struggling with Low carb because I am not in charge of what I eat, partly because of a dictator father and a typical working class fridge.. I do however do ALOT of exercise, I will try drinking more water to lower blood sugar. I don't know how I'll convince dad you cannot live on chips, rice, pasta, sandwiches and fish fingers.


Sent from the Diabetes Forum App
 
I think diabetes is linked to a lot more things than people currently realise. - did you see the link that was floating around, to a clip of an American doctor talking about the discussions they are starting to have stateside? About diabetes - and quite a few other things - being a symptom of an as yet unrecognised wider metabolic problem.

People on this forum, - I'm not counting myself in this yet, really do know more about diabetes than the doctors do. I think that maybe one of the reasons that we are seeing a sudden rise in cases has more to do with improved diagnostics than an actual huge rise in cases. - Maybe when enough people, of all shapes and sizes, are diagnosed, they'll start seriously looking at causes. Something needs to be done but at the moment, it's easier, and cheaper, just to say we brought it on ourselves. I think there's more to it than that.

It's really hard to convince some people that some foods they've always eaten, aren't good for them. I'm lucky at home. I live with my dad, but I do all the shopping. We don't often eat at the same time and dad doesn't comment on what I choose to eat or not eat. - My mum, however, who is diabetic, and a nurse, and really should know better, is a whole other story! She knows I eat low carb, but she arranges her birthday meal at a place where there is nothing I can eat without completely stripping down the one dish on the menu that can be stripped down. Then when it arrives "helpfully" piled with peas and carrots that weren't on the menu, to make up for the bits I had removed, she gives me a hard time for not eating them. Thanks for that mother.


Sent from the Diabetes Forum App
 
Thanks for the links! I might pass one on to my doctor, or perhaps better is the hospital that found my Polycystic Ovaries in the first place.

Odd development

Fasting was very unusually low at 5.1 today, after breakfast 8.6 and another hour or so after, oddly my first reactive hypo in months. When i was anorexic I was chronically hypoglycemic, I started testing 8 months ago because of what i rightly suspected as reactive hypos, then -round 6 months ago caught the high spikes before the lows. Then I stopped having hypos so much but bigger post meal highs and random highs after fasting/exercise until the heat wave (when a lot of other people went unusually low) Ok i had juice and a few jelly babies yesterday because i was upset, in denial and spent the day at an outdoor gym... Then i have this reactive hypo? Is this good or bad? Does this mean my insulin resistance has improved or does the hypo mean my blood sugar control isn't as good. Is pumping out too much insulin a problem?




Sent from the Diabetes Forum App
 
Hi Little wolf. Don't know if they are really reactive hypos or not. First of all what did you eat, and how high did you go at how long after the meal. Next, how low did you go, how long after the high?

The SD codefree can show a slightly elevated reading, only by a couple of points. So, your fasting of 5.1mmol is fine. If you then had breakfast, depending on how many carbs you had, and it sent you to what? 8 ? after 1 hour ? but then you came back down to 4 ? 5? after another hour or so, then I would say that you dealt with the breakfast. If I have two slices of toast it would give me about 12 (this is not acceptable, so I don 't have that) so I usually have 1 full fat greek yoghurt which is about 5g carb which would take me up by about 1.5mmol, with a return to starting point or lower after a couple of hours.

That spike I had, caused by a big liver dump, a few days ago, I went to 9.3 ( hadn't eaten anything ) was back down to 5.0, 50 mins later . I would not call that a reactive hypo. It would have been fine to drop even further. Normally my liver dumps at anything below 4 ish. Its fairly normal to be as low as high 2s or low 3s before your liver dumps. The level it responds is usually governed by the level of BGs that your body has got used to, therefore its usually at a much higher level in diabetics because their bodies have got used to having a higher concentration of sugar in their blood. All the time that you are not on meds e.g. insulin stimulating drugs, or insulin, then there is no danger from a hypo as your liver will pump out a bit of (sugar) into the blood when it feels that you are low enough to warrant it .So , assuming that your liver is working, it shouldn't be any danger all.

When you had your breakfast, did you go very high afterwards, and how low did you go, after what period of time. Its quite possible that you dropped very quickly and although you were not really low, it may have made you feel a bit wobbly. Carbs can cause this, this is why its often best for diabetics to restrict their carbs because for many people it causes a sudden rise in bgs and a very sudden fall, leaving them feeling sick, wobbly, and also hungry, so its very easy to feel that you then need to take just a wee bit of sugar or food to counteract it, when really it is not actually necessary to do so.

I know you have said it is difficult for you to eat properly because of family, but I do feel that you might benefit from being on a fairly restricted carb diet, not NO carbs, just an even small amount with each meal throughout the day, to see if it helps in achieving a smoother flow with your control, hopefully eliminating some of the dreadful spikes which are not good. The amount of carbs that we can tolerate varies greatly from person to person, so you would need to experiment. Also, I believe that if you are LADA as the pancreas starts to fail, then you will get an uneven supply of insulin anyway , making it more difficult.
 
Back
Top