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Wrongly Diagnosed?

Hi JenLou, Over 10 years ago I was diagnosed with Type 2 and like you diet, medications or one long acting insulin injection a day I could not get anywhere near good blood glucose levels. My mother and two of her sisters were late onset type 1, all in their 60's when diagnosed but my GP disagreed, insisting I was a type 2.
At the end of last year I requested an appointment with a dietician to try and help me get closer control of my blood glucose levels. I received a phone call two weeks ago. I was asked to take any of my records I keep myself, food diary, levels etc.
During the appointment these records were examined, together with questions, I was referred to a consultant.
Who after more questions and careful examination of my records, stated I am a Type 1/Type 1.5 LADA.
The hospital Diabetic Clinic have now taken over my care, I feel as if a great weight has been lifted because I always felt I had been miss diagnosed; so don't give up, if you feel strongly that you have been miss diagnosed, keep asking for referrals eventually they will agree,
Good luck
 

@azure Thanks I have just found it and purchased it, looks like it will be a good read. I'll post back and let you know how it goes after appointment..

Interesting about beta cells I didn't know that - the doctor on the phone did mention to me even though it appears I am type 1 - I he is not going to start me on insulin right away, although he will give me a prescription for it to keep for when I may need it.
 
JenLou said:
My GP never called me back to will have to try again tomorrow
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Have you tried 111, they sent me to a local walk'in centre to see a doctor at 1:30 in the morning recently. . But I'm fortunate enough to live near one. Last year the centre sent me directly to hospital for a lung infection..

Sometimes it's worth swerving your GP.
 
We don't have a walk in clinic where i live and i feel the hospital is a waste of time. They had me there for 28 hours in a chair without food, gave me 2 bags of fluids and sent me home even with high levels
 
Hi. I agree with the posts so far. Your levels do need urgent action. Even without DKA it will be causing damage. I think your weight is an important factor here. If you have excess weight the GPs will automatically assume T2 and that's why you are on Victoza?. Even though I was slim they still, wrongly, assumed T2. I don't think you have mentioned diet so far? Are you having a very low-carb diet at the moment which is essential at least until your BS comes down. Your aim must be to get into a normal weight range so the Victoza can be swapped to tablets or insulin; a very low-carb diet should help with that. It's possible to be both T1 and T2 so it can be confusing. I agree that you need both GAD and c-peptide tests. I finally paid to have mine done privately as my diabetes GP just didn't understand late onset T1; that's always an option. Good luck and do continue to monitor your BS and go to A&E or walk-in ASAP.
 

Hi, where did you have your tests done privately and if you don't mind me asking how much did it cost you?
 
Hi @JenLou, you seem very reluctant to call 111/go to the hospital to get this sorted out. I understand that this is a very big hurdle to take, but you must understand that the levels you exhibit, your dramatic weight loss and general feeling unwell are very big red flags for lack of insulin production - it doesn't matter if you're type 1, LADA, 2 or anything else, what matters is you need treatment right now.

If you go untreated, the consequences will be dire. Coma and death are a result of untreated DKA. It's impossible to tell how long it will take for you to reach this stage, but we can all tell you're at a point where you're heading into that direction. It could be a matter of mere days.

Please call 111 and tell them you are a diagnosed diabetic, lost 6 stone in a short period of time, have a blood glucose value of 27 despite taking all your medication, and that you feel extremely ill. Don't be afraid to be dramatic about how horrible you feel. This is an appropriate time to call that number and receive help, even if it feels over the top or useless. Doctors can't just release you without treatment if you insist on having tests done when it's a matter of life and death. Please remember that.
 

I have called 111 in the past and was sent to the hospital and it was a waste of time. I was sat there 28 hours and all they did was give me 2 bags of fluids and sent me home. I was admitted at 5pm on a Friday night and got nothing to eat for until 9am on Saturday morning when the cafes opened even after asking the staff to supply food as i'm diabetic but nothing.

In the end they released me with blood sugar of 19 so complete waste of time
 
@JenLou If you suspect you might be Type 1, you need a ketone test. DKA can come on quickly and, to be blunt, can be fatal.

I know you didn't have a good experience last time, but staff change and your experience may be different this time. Why not phone 111 and get some advice? Better safe than sorry, I feel.

Quite apart from any immediate danger, levels that high can cause damage to your body over time. Don't let unhelpful people put you off getting the care you need. You need to push sometimes and advocate for yourself.
 
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I totally understand that. What they did wasn't right, but that's why we need to step up the game a bit. Sometimes we have to fight to get what we need. Just because they didn't help you then, doesn't mean you will waste your time now too. Even so, it's always better to try and fail, than to never try at all. Don't let your feelings stop you from pursuing what you're entitled to!

As a patient, you have rights. You're not just at the mercy of unhelpful doctors, if your life is in danger, you can demand to have relevant tests done and they must comply or they risk losing their licenses. I would have no qualms reminding them of that!

Is there anyone you can ask to go with you to back you up? It can be daunting to go in by yourself when you're not feeling well. Having someone to support you and advocate for you to get the tests you need can help immensely. I know I would stick with you if I had that option!
 
I think it is more important to get those very high levels down first and foremost, and think about the tests afterwards. The only way for this to happen is by going to the hospital, and that should be ASAP
 

Everyone is refusing to spend a friday night in A&E with me
 
@JenLou Do you want to live or die. That is a question you should be asking yourself. You are putting yourself in danger by not taking the advice of those who have replied to you. Go to the nearest A&E Actually...Call an ambulance as it sounds as if you are not fit to drive yourself there. PLEASE do it!
 
JenLou said:
Hi, where did you have your tests done privately and if you don't mind me asking how much did it cost you?
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Hi. I used Medichecks (in the UK). I think you will find currently it's around £99 for each test. You would need to have the bloods taken at one of their centres. I did use the NHS phlebotomy clinic but it's a bit complicated as Medi provide a 'free' voucher but some hospitals don't know what to do with it.
 


I've read of misdiagnosis before and i'm wondering if it's a rare occurrence or it happens quite frequently? I'm thinking there are no statistics available on this as they probably don't want people to know they got it wrong. So my question is, should they be considering doing these GAD & C-Peptide tests as standard together with the HbA1C or is this too expensive? I think it will save people a lot of trouble and anxiety for people in the long run, or at least do them when they do the second test which confirms diabetes? I know they got me back for another HbA1C to make sure
 
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