Did you have the blood tests at your GP or the hospital

[julie42]

A few months ago the dietician and I discussed 1.5 as I do not present as a typical type 2 according to her. My GP will not test me for GAD65 or C Peptitdes, I think that is what they are? I have offered to pay but she said I need to see a specialist but due to "red tape" I would only get these tests if I go private and I can not have an NHS referal. My private health insurance will not cover diabetes and for 2 appointment plus the blood tests it could be over £600. I don't know what to do next? Since diagnosis the end of December I have lost 35lb and I am now 8 stone 7lb as I can only control my weight by low carbing. I am on 2 x metformin but the GP wants to tke them away due to my hb1 being 5.3, she suggests I am cured but if I eat normally my sugars are in double figures. It is so annoying, I had retinopathy at diagnosis so I am careful of what I eat. I feel well and everyday I eat advacados, nuts, raspberries and lots of fish, meat and veg ect but I don't want to lose much more weight. If I do have 1.5 and went on insulin it might help my weight.
Is my GP right or did yours test you? I feel it is one fight after another with her and I have very little confidence

 

[Embabe25]

I was only tested for GAD antibodies after being admitted to a&e with DKA.

Are you in the uk?


Em x

 

[mo1905]

I was tested for both GAD and C-pep. My doctor requested them. I had them done as part of my regular hospital appt on NHS.

 

[smidge]

Hey Julie!

I had similar problems to you. I was losing weight and getting really ill. The stupid nurse at my GPs insisted I was type 2 even though I had no risk factors for it and was underweight rather than overweight. I researched what my condition might be and came across LADA. I took a note of the tests that could identify this type of diabetes and asked the nurse to do them. She had never heard of the tests or of LADA. She rang the hospital and was told that in my area, the GP is not allowed to order the tests and they have to be requested by a consultant. She refused to refer me, so I made an appointment to see the GP and explained all the issues to him. I told him I would sue if it turned out they had misdiagnosed me and I got any complications as a result. I discussed my pre and post-meal readings with him, showing him that i was spiking into double-figures even when i had no carbs in my meal. He referred me to the consultant who immediately put me on insulin. My weight improved immediately. i later had the GAD test which confirmed Type 1 diabetes.

I know it's the last thing you want to hear when you are ill and worried, but you have to go back to your doctor and be assertive - very assertive!

Take care

Smidge

 

[julie42]

Thank you for the replies, yes in an in the UK, she may be right then. I have left a message for the dietician to see if she could find out if going via the NHS they would test me as she agrees with me. Our surgery is hard work, on diagnosis I asked if I could be type 1 and the GP smirked and said not as an adult, we all know that is not true. I think I wind her up as I ask questions she does not know the answer to, like the 1.5.
I think I might be best pushing for an NHS referal although the dietician had phoned my GP several times concerned at my medication and still I have not been passed over, very odd I thought she would want to see the back of me.

 

[Yorksman]

I didn't suggest this.

Go to A&E when feeling bad at night or preferably a weekend. They undertake many tests.

They don't like people doing it because they have their own targets, 4 hours for people waiting in A&E but they also know that many GPs are not doing what they should do and that you are forced there out of desperation.

Lack of GP referral is causing A&E a major problem now but they will test..

They will also write to your GP and tell him that you presented and he will scold you saying that you should have seen him. Ignore it all. These arguments are about who pays for what in the NHS budget but your primary responsibility is towards your own health.

A&E are nearly always more sympathetic than GPs in these cases.

Don't go friday nights or saturday nights, its full with drinkers and the police who have brought them in. Early morning on a bank holiday would be good. I can assure you, people tend not to present ill on bank holidays

 

[Embabe25]

That's atrocious! Can you not change GP?


Em x

 

[elaine77]

I'm with smidge, threaten to sue them if you end up ill or get DKA after showing them evidence of LADA and see what they do then! I would be extremely surprised if you were type 2 diabetic at that weight! If you're losing a lot of weight too I think checking for ketones would be important too.


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.

 

[Daibell]

Hi. I have suffered the same problem over 8 years but have finally gone onto insulin which I asked for 2 years ago; there is so much ignorance within the NHS. One thing that immediately jumped out at me in your post was the HBa1C of 5.3? This is amazingly low assuming the post didn't have an error. If this is your HBa1C then you need to eat more to bring both your weight up and your HBa1C to an acceptable level between 6 and 7%. From this you will be able to have a better feel of your correct diagnosis. Despite low-carbing (starving myself!) my blood sugar kept going up beyond 7 to 8.3% which was an indicator of a failing pancreas. I did have a c-peptide and GAD done privately (Google Medichecks) for less than £350 total; you don't need to use a consultant or any GP letter etc. My GAD test proved negative but the c-peptide showed I had little insulin which confirmed by suspicions. I never needed to tell the GP about the tests but had it up my sleeve in case she continued to refuse me insulin but the high HBa1C finally nailed it.

 

[qbix]

This is all really interesting. My experience has been completely different. I was diagnosed this year. I went to the GP with a BG of 19.8 and was in the diabetes clinic next day getting insulin, BG monitors and test strips. I was not over weight and was consequently treated like a type 1 no questions asked. As far as I am aware I have had no further tests other than my hba1c which came out to be something like 11%. I have managed to control my diabetes really well with the insulin but would love to know if I am actually a type 2 masquerading as a type 1. Especially since my insulin requirements are really small. I am watching what I eat very closely and on a reduced carb diet (150 - 200g a day) but even still reading some of the posts here I seem to have had an easy ride of it.

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[smidge]

Hi qbix!

If you were only diagnosed this year, you are probably still in the honeymoon phase - and this is probably why you need only small doses of insulin. cutting your carbs down and taking the insullin gives your poor overworked pancreas a little break and it responds by producing more of your own insulin for a while. Unfortunately this doesn't last for most people ad your insulin requirements will rise as your own insulin starts to diminish. Having said that, i still produce some of my own insulin 4 years on, so it might be a slow transition to larger insulin doses rather than a sudden one.

Daibell - on a low-carb diet before I went onto insulin, I managed to achieve HbA1c of 5.4% on just diet and exercise - this is hard but entirely possible with early-stage LADA. My fasting levels were also very good - usually in the 4s. The real trouble with LADA is the post-prandial spikes which are very high relative to Type 2s. LADA is usually characterised by no first phase insulin production (hence the high post-prandial spikes), but pretty strong basal or 2nd phase insulin production. In the early stages, this means that the average and fasting is usually very good but the post-prandial is shocking. This is why LADA is often not diagnosed until later stages. The medics are just not used to dealing with early-stage LADA - the consultant even offered to undiagnose me at one point on the basis of my fasting and HbA1c despite my Glucose Tolerance Test clearly indicating that my ability to metabolise glucose was much worse than you would expect from Type 2. I never did have the c-peptide test, but luckily, when i finally got the GAD test done it was pretty conclusive.

Smidge

 

[qbix]

Hi smidge

Thanks for the info. It helps answer a question I posted on the forum earlier today which was how long you honeymoon period lasted :smile:. I realise everyone is different though and mine might not last that long, or could last longer. I guess I my real worry was that I would wake up one morning and my BG would be completely out of control and I would start having to take massive amounts if insulin with no warning what so ever.

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[julie42]

Sorry I have not replied it has been a horrible month, family passing, my son doing GCSE's and we managed to get a week away. I had another hb1 last week and see the nurse next week. I have found out my GP is leaving so maybe the new one will look at my case again as the dietician at the hospital has written again to the surgery.
I will post how I get on next week

 

[Sammeh5678]

Both I have tests at both, monthly too!


--
Sam
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Facebook.com/sammskii999

 

[hose1975]

Hi smidge,

That's interesting, what you said about LADA being characterised by no first phase insulin production but strongish second or basal insulin production. Where did you find this out? Can you link to it? Might that explain why I'm high one hour into an OGTT but normal at two hours?

Cheers,

Jo

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[fairylights]

Like qbix I am also in Scotland and my experience was similar. I went to GP on Weds and got referred straight to DSN at hospital. I was at hospital on Thurs, they did GAD and c-peptide tests and I was told I definitely had LADA about a week later. (Despite being overweight and 50!)
Where I am the hospital team work closely together, DSN, consultant, podiatist, dietician. Can't your dietician get you seem by someone at the hospital?

 

[jermy_04]

Nice post !

 

[-Artemis-]

The real trouble with LADA is the post-prandial spikes which are very high relative to Type 2s. LADA is usually characterised by no first phase insulin production (hence the high post-prandial spikes), but pretty strong basal or 2nd phase insulin production. In the early stages, this means that the average and fasting is usually very good but the post-prandial is shocking. This is why LADA is often not diagnosed until later stages. The medics are just not used to dealing with early-stage LADA - the consultant even offered to undiagnose me at one point on the basis of my fasting and HbA1c despite my Glucose Tolerance Test clearly indicating that my ability to metabolise glucose was much worse than you would expect from Type 2. I never did have the c-peptide test, but luckily, when i finally got the GAD test done it was pretty conclusive.

Smidge

Hi there, new to the forum and just reading through some 1.5 info as the dr's think this is what I am... I am intrigued though as Smidge, you say it's typical to have good fasting but poor post meal readings? Mine are the other way around; my fasting is terrible (currently 9's) but after meals typically a bit better... So now I'm confused again - does this make me a more typical t2 or t1?

 

[elaine77]

Hi Artemis,

I am LADA, diagnosed via low c-peptide and GAD antibodies and I have always been the same as you, my fasting is not good, usually 7-9mmol but, depending on what I eat, my post prandial are 6-9mmol which is not too bad for post prandial! I'm not on insulin either just Metformin. The problem with LADA is that the medical professionals don't even know enough about it other than it is an insulin DEFICIENCY rather than an insulin RESISTANCE or an insulin DEPENDENCE... That's literally about all the know! I've been diagnosed almost a year now with minimal change in my condition.....


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.

 

[-Artemis-]

Hi Elaine77 - that's really interesting to know, thank you!

I'm sooo confused - I kinda think I may be a blend of t1 & t2... I'm not overweight with a bmi of 22 but I do suspect I may have insulin resistance. When my blood sugars go above around the 7 / 8 mark for more than a couple of days, I put on weight - which is typical insulin resistance I think...?

But then I have very high GAD and low c-peptide, so all soooo confusing...!