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Not great but could be worse

The 'Better' one to get if you are going to get it !

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I have been wanting to write about being diabetic for a while now but only just got round to it so here goes..
Well I am a 'fake' diabetic as I don't have type 1 or type 2..let's start from the beginning, are we sitting comfortably? Then we will begin.

Going back to about 8 or 9 years ago I was constantly tired, had dry sore throats and generally felt a bit under the weather nearly all the time. I had various blood tests which showed nothing up and it was decided it was because I had suffered from glandular fever a few years before and it was still in my system that was to blame. I wasn't happy with this so went back to see a different doctor who again did lots of tests including one for diabetes "To rule it out". A week later I had just got home from work when the nurse phoned from the doctors surgery saying she wanted me to come for more blood tests as my blood sugar reading was a little high at 7mmol/L where as the 'normal' reading should be between 4.5 and 6mmol/L.

The diagnosis~
After more blood tests it was decided I had type 2 and was sent away with a handful of leaflets and told I would go to the diabetic clinic every six months.

Everything was going fine until I became pregnant with my first child. although I had been for my blood testing when I was about 7 weeks pregnant and had mentioned it to the nurse at the time she said to see what the midwife said. I had to wait then till I was 13 weeks pregnant to see the midwife who said I should have been referred to the hospital to see the specialist who deals with pregnant diabetic women- I was not amused I had been 'left'!
When I saw the specialist I was around 17 weeks and though I felt really quite well my blood sugar had gone crazy with the hormones and was topping the 16 and 17mmol/L mark regularly so it was decided I would have to control it with 4 daily insulin injections (ouch I'm not a needle fan!) as well as test my own blood with a finger prick test also 4 times a day.

So everything went okay then..? Well the insulin didn't help at all and caused me to have several 'hypos' (when the blood sugar level drops significantly causing shaking, dizziness and even fainting amongst other things). By this time there was a new study going on in the world of diabetes into an unknown form called Glukokinese or MODY which stands for Maturity Onset Diabetes of the Young. I was asked would I mind if I took part in the study to see if I had this form and said yes why not and offered my arm out to the nurse for yet more of my blood to be taken!

I went for my fortnightly appointment at the diabetic ante natal clinic and saw my specialist who informed me "Congratulations- You have MODY!"

So what is MODY or Glukokinese?~
Well MODY is when the body's blood sugar is set at a higher level than the average persons- like I mentioned earlier the normal reading is 4.5 to 6mmol/L where as a person with MODY will find their average reading is about 8 or 9mmol/L. So by the doctors not knowing I had MODY and thinking I had normal diabetes giving me insulin was actually making worse- luckily my unborn son was not affected by it.

So what happens then?~
The doctors said there was no point in me carrying on with the insulin so took me off it and gave me weekly scans to check the growth of my baby (diabetics can have large babies but mine thankfully was a titch!) and decided to induce me at 38 weeks 'just to be on the safe side'.

After the baby was born~
As MODY is caused by one change in a single gene, there is a 50% chance of inheriting it or passing it on to children so they kept me in hospital for 4 days and had to check my baby's blood before and after every feed, but his blood seemed to be normal so we were discharged.

I saw the specialist at the hospital then on two seperate occasions for my blood tests to check my hba1c- which gives an average read of your blood sugar.

The second pregnancy~
I know I have gone on about being pregnant quite a lot but it's very important to keep a close eye on diabetes during pregnancy- especially for MODY patients who the doctors admitted (and still do) they don't know enough about.
When my son was 6 months I became pregnant with my second child, and this time they did things a little different. Instead of any medication I was told to keep an eye on my diet but I didn't need to omit anything just be sensible. I was given weekly scans to check my baby's growth (hardly a hardship seeing my unborn child every week- the only good thing that came out of my diagnosis!) and though my sugar level reached up to 20mmol/L a few times my specialist still kept me off medication as he said it wouldn't help. Though I said I felt unwell all pregnancy he even now admits he doesn't know whether it was because of my blood sugar readings or just pregnancy and because I was one of the first women with MODY to have two normal sized babies I was rare (or special as I tell people Lol!).
Again my second baby was born healthy and I stayed in for four days whilst they went through the testing of his sugar, it was fine so that was a relief!

What now?~
It's very awkward when I tell anyone about my condition because even though I have to annually have my feet, eyes and Hba1c checked my specialist says I'm not classed as a 'proper' diabetic!
At present I see my specialist once a year though if I plan on any more pregnancies I have to inform them as soon as possible as they 'may do things different this time' what ever that means!

The facts~
MODY affects approximately one or two percent of people with diabetes- if you have type 2 it may be you have been wrongly diagnosed.

It is also not linked to obesity in any way or form (I'm a healthy 5ft 3in, 8 and a half stone, never smoked, drink in moderation, eat healthy and exercise a lot!) and is normally passed down through the gene pool and runs in families.(my parents were both tested and my dad has it- cheers dad!)

It often goes unrecognised for years and tends to develop before the age of 25.

At present there are 6 different types of MODY and none are insulin dependent.

When I was told I had diabetes I thought my life would drastically change but at the end of the day I was doing everything right anyway so as long as I carry on there is no need not to have a little of what you fancy now and again, as long as you are sensible!

For more information on any form of diabetes visit:

I am going to put one star on the rating as how do you rate diabetes???

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Comments about this review »

chrisandmark_is_here 22.09.2013 18:26

Interesting and informative x

Deesrev 15.06.2011 08:16

Smashing review with excellent information that is presented in a very easy to understand way, E from me xXx

Alyson29 07.03.2011 06:21

I'm back as promised x

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This review of Member Advice on Diabetes has been rated:

"very helpful" by (85%):

  1. cornishchic
  2. pinky50
  3. Jake_Speed

and 37 other members

"helpful" by (2%):

  1. anonymili

The overall rating of a review is different from a simple average of all individual ratings.