Confused

[lottiep]

Hello there,
I have epilepsy and after suffering a seizure last year a blood glucose test was taken which was found to be high, I suddenly found myself the following morning being seen as a high priority case in the Diabetes clinic. Following the usual tests I was informed that I had type II diabetes, was handed stacks of leaflets, a blood testing kit a prescription for metformin and sent home. A few weeks later I was called back to the clinic and was told that I was in fact Type 1. Again I was given a futher stack of leaflets told I would probably require insulin at some stage, to continue testing my blood sugars and sent home. Due to my epilepsy the diabetes nurse decided that once my bloods hit a certain sustained level she would start me on a small dose of insulin - the consultant had simply written to me to tell me that when I "was ready to take the plunge with insulin to let him know".
Approximately 5 months after the inital diagnosis I was started on insulin, as well as the metformin, and on I plodded.

In February of this year I suffered a further seizure which unfortunately resulted in a extradural haematoma and required neurosurgery (all fine and mended now). Whilst I was recovering from this I routinely saw my diabetes consultant who after initially giving me someone elses blood results told me that my blood results were all actually normal and that I now had non diabetic blood results. When I asked him if I actually had diabetes or not he told me that it would be easier to reply in writing as he was pushed for time.

Approximately three weeks later I recieved a letter which still did not answer my question - thankfully my GP had that week had a briefing from another diabetes specialist who had taken a look at my results and confirmed the following:
I am diabetic as the anti GAD antibodies are present in my HbA1C blood tests however they are currently inactive and not attacking my pancreas. When or even if these antibodies would become active is an unknown.
I have been taken off the insulin but remain on the metformin however my blood results are higher now than they were when I was on the insulin, ranging between 9-13.

Do I have type 1 diabetes, type 2 diabetes or LADA the type 1.5 that I have read about?

I have given up completely with the diabetes consultant as he seems completely incompetent and decidedly uninterested in helping me. My GP has now gone on secondment for 3 months and I am thoroughly confused. If anybody has had a similar experience or can offer any help or guidance I would be really grateful.
Many thanks Lottie x

 

[xyzzy]

Hi Lottie and welcome to the forum

That's a really bad time you've been having!

None of us are doctors so can't really offer proper professional advice but my own totally unprofessional opinion is you are most likely T2 or maybe in the initial stages of LADA. I would doubt you are T1 because if you are only getting readings between 9 and 13 it would imply you are at least producing some insulin. Whether those high readings are being caused by a lack of insulin which would indicate LADA or by insulin resistance which would indicate T2 is what I though a GAD test along with a c-peptide test should have determined. I think a c-peptide test measures how much insulin is being produced. It is the primary test used to determine T1 as T1 diabetics produce no insulin.

What many members have found regardless of what Type of diabetes they have then carbohydrate reduction is a very good way of reducing levels. I am plain vanilla Type 2 so I can only tell you what I did to get my levels under control. There are many T1's and LADA members who do a similar dietary regime to myself.

Another thing that maybe of interest is that very low carbohydrate diets have been found to be beneficial for epilepsy sufferers. Again I can only point you at some research obviously I am no expert in saying if it would be suitable for yourself.

Anyway I was diagnosed in December last year and using the advice I found on the people on the forum I got my blood sugar levels back to normal within around a couple of months or so and I have also normalised my cholesterol levels and blood pressure as well. I have now lost over 3 stone in weight too. My doctor is very pleased how I am getting on and has advised me to keep doing what I have been doing since it's obviously working really well. Not a cure as I still have to be very careful what I eat but I feel loads better than I did.

Diet wise its really easy. Just drastically cut down or better cut out all things with plain sugar, so biscuits, cakes, sugar in tea and coffee, pure fruit juices, non diet versions of soft drinks. Next and really importantly try halving starchy foods like rice, pasta, potatoes, bread, cereals and any other flour based products. Replace what's now missing with extra meat, fish, eggs, cheese and especially vegetables. Vegetables that grow above ground are best although most of us find carrots fine. Things like yoghurt are fine as is a small amount of fresh fruit. I find the ones that end in "berry" are the best. If you don't mind artificial sweeteners things like Diet Coke are fine to drink. On the starchy foods that are left swap try brown basmati rice instead of white and brown or tri-colour pasta. The bread that most recommend is actually Bergen soya bread but some do ok with wholemeal as well.

The above diet is close to one you would be one recommended to try by the Swedish Health service. It was introduced in that country last year and the American health service and several other countries health services recommend something very similar for Type 2 diabetics. In the UK the diet guidelines are now over 30 years old and are only gradually being updated. As the UK is lagging behind you have already seen what I and other forum members recommend is different to what your are told is a good diet for you follow.

Obviously you have a meter and strips from when you were on insulin. Are they still prescribing you strips now you are just on Metformin. If so you are one of the lucky ones so keep in the docs good books!

As you are probably aware the reason testing is important is you should try and keep your blood sugars below 8ish two hours after eating any meal. Above the 8 value is where the dangers of complications do begin to occur according to diabetic experts. The problem is every diabetic is different so my earlier advice to halve starchy foods is just a rough guide. You may find you need to eat less than half (like me) or that you can eat more than half like others.

As you get into it all and read around the forum you may see people talking about carb counting. If you want to understand what that is just ask. It is a powerful weapon that a diabetic can use to control their condition and one that many of us use to great effect.

Good luck and keep asking questions.

Regards

Steve

PS Here's two good links about what's good to eat.

First is the lady doctor who's low carb / low GI recommendations seem to form the basis of what's recommended in Sweden

http://blogg.passagen.se/dahlqvistannika/?anchor=my_lowcarb_dietary_programe_in

Second is a good beginners guide to low carb regimes that are excellent for reducing blood sugar levels and losing weight.

http://www.dietdoctor.com/lchf

 

[lottiep]

Dear Steve

Thanks for such a prompt response!! Been such a confusing year - one minute we were trying for a baby, the reason for the seizure, had to come off my meds, the next I was being told I was diabetic and being bombarded with leaflets and information and worse case scenarios!! I really think the Drs need to look at how they break news to people! One minute it was all emergency then they suddenly all lost interest and didn't explain why!
My GP has told me that my blood results are indicative of a type 1 but that the antibodies are simply not attacking the pancreas as would be expected. I am producing some insulin but as my blood readings show it may not be quite enough.
Whilst I was on the insulin, although only a small dose, I have to say I did feel better but they have refused to let me continue with it saying that i categorically don't need it and the metformin will be sufficient. I take such a cocktail of drugs now that despite it being an injection I was able to view the insulin as a natural product that i was merely boosting rather than a 'drug' I believe it had a positive mental effect as well, the drs arent interested in that!!
Thanks for the diet tips, I had read last year a lot about the low carb approach and was aware that that it is embraced in America. When I mentioned what I had read to the diabetes consultant I was reminded of being told off by the head teacher at school - why can we be so innovative in some areas and yet so blinkered in others?
Thanks again for the tips and advice
Lottie.

 

[xyzzy]

Hi Lottie

Metformin is a good safe drug that many including myself take. You just have to be aware it isn't a magic bullet. Most of us find that although it does help with post meal spikes it really doesn't reduce your background or fasting levels by much more than 1 or 2 mmol/l. My honest opinion is that getting the right diet is ten times more effective than any diabetic drug other than going on insulin. In my own case by restricting my carbohydrates down to around 60g / day and taking 1500mg of Metformin my levels run between 4 and 6 around 98% of the time. Quite hard to do to start with as you get so use to eating all those starchy foods over the years but in a few weeks the cravings pass and you soon come to appreciate that you aren't really missing anything much.

Again a non professional based and personal thing I have is to try to avoid drugs that stimulate insulin production such as "glic" and several others. To me if your pancreas is either being highly overworked by being T2 or bluntly is on its way out if you are LADA then turbo charging it doesn't seem a particularly sensible thing to do as I feel pretty soon you will hasten the poor things demise and then have no alternative to insulin. You may want to mention a drug called Januvia (Sitagliptin) to the doctor. Simplistically it works like a more powerful version of Metformin. Metformin and Januvia both suppress the the take up of glucose by the blood so don't stimulate the pancreas. It's the reason I am quite happy taking Metformin. Metformin also has proven benefits in preventing heart disease.

Finally on the epilepsy you might find this http://en.wikipedia.org/wiki/Ketogenic_diet a good place to start regarding low carb and epilepsy. You could use the fact that ketogenic low carb diets appear to be deemed safe for epileptics as a good reason for adopting one but of course talk to your doctor or specialist first! A true ketogenic regime would involve you cutting out the vast majority of carbohydrates so that you consistently eat less than around 50g / day. This puts the body into a state where simplistically it runs on fat rather than glucose and for some reason that I don't profess to understand that is good for epilepsy and stops seizures etc. Quite a number of diabetics on the forum do ketogenic or vlc (very low carb) regimes with great success so if you want to find out more just ask. My non diabetic wife also follows a vlc regime as she says its brilliant for losing and keeping weight down.

Hope this helps

Steve