Increasing BG- misdiagnosis of type and treatment?

LauraPalmer

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7
Type of diabetes
Type 1
Treatment type
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Hello all,

I'm currently having a lot of problems controlling my BG, and wonder if a confusing diagnosis about my type and the consequent treatment might be the cause - I'd really welcome any advice.

I was diagnosed as diabetic three months ago, with very high numbers (HBA1C 119, fasting BG 16). The type was never made clear to me, but as I am relatively young (35), have never been overweight, and the symptoms came on over around 8 weeks, I suspect T1 or T1.5. I've pressed the GP but he said the type didn't matter as the treatment was the same - from reading this forum and elsewhere, I now don't think this is the case.

With treatment - 2g metformin and 160mg gliclazide - and a very controlled low carb diet, my numbers were slowly coming down - BG averaging around 10, and HBA1C at 87 when last tested four weeks ago.

However, over the last 10 days, my BG has shot up - now average high teens again, with results as high as 22 yesterday - and symptoms have returned (fatigue, increased thirst and urination, and now some stomach pain). I am not yet back in ketosis (was ++++ when diagnosed, now still +). I am still strictly low carb, and just can't understand why my BG is increasing again.

After chasing my hospital referral, I now finally have an appointment, but not until 14 August. I'm very worried about having such high BG for another month, and, again from some research here, that my medication might actually be making things worse.

Does anyone have any advice? I'm currently waiting for a call back from the practice nurse at my GP, but don't have much faith that they'll do anything until new I've seen the specialist. Will another month of high BG and these meds cause any permanent damage? The only other thing I can think of is going to A&E, but I went shortly after diagnosis (on the advice of 111 as feeling unwell and worried about the ketones), and all they could do was give me a saline drip and tell me to look out for any acute symptoms.

Apologies for the long post, and thank you for any help!
 

Juicyj

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Hello @LauraPalmer Welcome to the forum :)

I wouldn't waste any time - you need to be seen as a matter of urgency, so if the nurse at your GP practice doesn't offer an appointment to be seen straight away then yes you will need to go to A&E, you cannot sustain high blood glucose levels so for your immediate health you need to get some help asap, the medication is obviously not working so you will need to be reviewed for insulin injections, good luck and please let us know how you get on.
 

LauraPalmer

Member
Messages
7
Type of diabetes
Type 1
Treatment type
Insulin
Hi Juicy

Thanks so much for your reply - you've confirmed what I feared I'm afraid, so it's good to know I'm not panicking unnecessarily at least. I don't understand how my GP is so laid back about such high BG and ketones :arghh:. Will update when I've spoken to the nurse.

Thanks again :)
 

ringi

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GP does not know how many carbs you are eating, a lot of people tell their GPs they are "being good" when they are not, hence GPs expect levels to come down slowly in type2. What I don't like is your levels going up for no good reasons.

Unless you can find something that has changed over the last 10 days to make your BG go up, I agree you need to see a doctor, even if you need to turn up at 8am in the morning and refuse to leave until they sort you out.

Have you changed what you are eating or drinking in anyway in the last two weeks?
 
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LauraPalmer

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ringi, that's it exactly - there really has been no change in diet or lifestyle over the last two weeks, so I just can't understand why it's shooting up.

Oh, one exception - I have started taking some vitamin supplements prescribed by my GP as I've had some other problems (hair loss and muscle twitches) that he thought might be caused by nutrient deficiency from the change in diet. A strong B vit compound and additional B6 - but surely these can't be affecting my BG so drastically?

It has gone up from 16 on waking to 20.3 this afternoon, when all I've eaten is breakfast of yoghurt and blueberries at 9am. I just don't understand how it can be so high when I'm eating so little. I'm still waiting for the nurse to call back, but if no luck from her I think I'll have to take your advice and try A&E again.

Thanks again - it does help to have people to talk it through with!
 

ringi

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I was thinking you turning up at your doctor not A&E, it is a mis-use of A&E to use them just due to your doctor no having time. But.......
 
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ringi

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Or if the BG keep going up this evening (I assume you are writing down all the results) go to A&E and explain about the nurse not phone you back, and therefore you having no other options, and show them the chart of your readings. The least they should do is a "blood gas" test.
 
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Juicyj

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I disagree with you @ringi it is not misusing the system to go to A&E when your blood glucose levels are uncontrolled and above 20 mmol/l.

At these levels @LauraPalmer needs assistance, if the GP has failed to recognise the urgency of this then it is vital she is seen at A&E, if she had indeed been mis diagnosed and is a type 1 then there is the danger that she could be suffering DKA which is life threatening, either way health comes first, best wishes Laura I hope you're ok.
 
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Kristin251

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Have you lost weight recently?

I was misdiagnosed as well. Bs running much too high for weeks. Felt awful. I suspect I was mis/ undiagnosed for months as I was losing weight and bs was always high even with a handful of lettuce. I was co tunously going to the docs for weight loss and inability to eat any food with out high bs. They put me on amaryl which only exasperated the whole thing. It was squeezing my almost already dead pancreas until it killed it. Once on insulin ( after three stays in the hospital in one month) everything got better right away.

Sudden weight loss is one of the big indicators for LADA. I was 50 years old at DX. It can happen anytime.

Do everything you can to be seen as soon as possible.
 

Daibell

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Hi. I've been down the same route but my GP never accepted I was T1 but in the end offered insulin after an initial refusal. I was frequently in the 20s but luckily never had DKA that I was aware of. I would just keep the carbs way down until you are put onto insulin and go to A&E if needed. Insist on moving to insulin if there is any doubt.
 

ringi

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I was told by a consultant that most GPs only see a new case of T1 about once every 5 years, in Stockport the correct action is for the GP to use the "phone a consultant" service, as there is a consultant on duty from each department sitting by their phone for such calls. The consultant can give the GP advice, or admit directly to the correct ward bypassing A&E etc.

The hospital is still having issues with GPs forgetting about the "phone a consultant" service, if I recall correctly it has now been in for well over a year.

(Remember a hospital admission often does not last more then a few hours.)
 
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BeccyB

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Hi @LauraPalmer, how are you this morning? Ok I hope.

Do you have an NHS walk-in centre that you could get to and see another doctor?? Although if things are still very bad I agree with @Juicyj, if you have very high sugars and especially ketones with no way of bringing it under control (i.e. insulin) then I would say it's an emergency and going to A&E is justified.

And meanwhile keep a record of all your contacts (or attempts to contact) your GP/nurse as you can put in a complaint once you're well again.
 
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LauraPalmer

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A very belated reply - to thank you for all the kind and helpful replies, and in the hope this thread might help someone else.

I had a really bad time - when I finally saw my GP again he just doubled the gliclazide dose and told me to wait it out. I continued to get sicker and sicker - BMI dropped to under 16, hair falling out in handfuls, BG regularly in the 30s - and could barely get out of bed or function at all.

I probably should have gone to A&E, but as the first time I was just given a saline drip and sent home I didn't have much faith in it. I ended up paying to see a consultant privately, which was a lifesaver (and I know I'm very lucky to have been able to do) - she immediately said it was definitely T1 and that I was at real risk of severe DKA, and gave me enough insulin to see me through to my NHS hospital appointment.

Since I saw the NHS endocrinologist in August, things are so much better! The T1 diagnosis was confirmed, I have a proper basal/bolus insulin routine, I'm regularly seeing the doctor and a dietician, I have a specialist nurse I can call any time... I feel like I've gone from being left to get more and more ill with no support to having proper medication and a whole team around me. I'm so grateful for this - although I've also had to deal with a lot of bitterness at how I was treated by the GP.

So, to anyone reading this diagnosed in adulthood - GPs are not good at recognising adult onset T1. I wish I'd pushed harder to be taken seriously and saved myself three months of very bad health. But on the plus side, when under specialist care NHS treatment is great. I'm still coming to terms with everything, but I feel better than I have done in months and finally feel myself again :)

Thanks again for all the help here xx
 
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Strachan1

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I was undiagnosed for 6 months, lost 4 stone. Fatigued couldn't get out of bed and felt sick eating. Just a walking wreck as sugars were always over 20. Was T2 before and they kept on adding tablets. I realise now how serious that could have been. That's the second time doctors haven't listened too me. The first time was for diagnosing a brain tumour that took 10 months! It was the optician that sent me to hospital. Yes... they can get it wrong. It makes you lose a bit faith in them.
I'm glad you are sorted now, as I am, but it should have been sooner. Good luck.
 

Juicyj

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Hi @LauraPalmer - Sounds like you've had an awful time, glad your ok and thank you for updating us.

Wishing you a good recovery :)
 

Snapsy

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Oh @LauraPalmer what an awful awful story! Sending a whole heap of hugs your way. Really great to hear how much better you are feeling. Thanks for the update!

:)
 

Indy51

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Might be worthwhile checking the PHCUK website to see if there is a real food GP in your area:
https://phcuk.org/map/

They seem to know a lot more about diabetes than your run-of-the-mill GPs.
 

therower

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Hi @LauraPalmer . Just stumbled across this thread, you've had a rough time of it that's for sure. It's good to know that you're now getting the care and treatment you need.
It's a shame that you seem to have drawn the short straw with your GP. Is there another GP you could try?
I was fortunate that my GP saw me one night and the next day I was injecting insulin ( times and protocols have changed and I'm not sure for the better ). We have one GP at the surgery who I along with everyone else tries to avoid like the plague . Even in the confines of a small surgery you get good and bad.
Hopefully you can find a better GP who can restore some faith.
Have a good day.:)
 
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ringi

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For the sake of the next person to get the same problem, have you both considered taking legal action against your GP?

Most GPS will only see a few cases of adult onset T1 in their life but see many cases of Type2 with people laying about what they are eating every year. So until there starts to be headlines about GPs being sued we may not see any improvement…………….