Help with my new diagnosis

rg2203 said:

Hello,

I am a 24 year old female. I was diagnosed as diabetic (type 2) last week following a HBA1C result of 51.
I wasn't aware that the doctor was testing my blood sugar levels (I thought they were testing hormones). I also wasn't aware that they tested my blood sugar back in March 2020 and had a result of 49. This diagnosis has come as a complete shock. I knew I has a reasonably high blood sugar level (high 30s low 40s) but I thought it was under control. I have recently had a lot of stress in my life (past couple of months) as well as being at home more so potentially worse diet, I feel these surprise test have been extremely unfair.

Anyway... I exercise reularly (gym and swimming) and I eat a healthy diet. I don't drink and I don't smoke. To me this diagnosis just doesn't make sense.

I have been to the doctors regularly complaining of not being able to lose weight (infact despite exercise and diet I seem to put on more!) as well as extreme tiredness and headaches. I have had absolutely no support with any of this. I am just so concerned I have something else underlying going on here.

All my doctor has done has prescribed me metformin - I have begged for a referal to an endocrinologist after a GP friend said I should be tested for MODY diabetes.

Basically I am very lost and feel like this diagnosis has been thrown at me out the blue! Not quite sure if I am doing the right thing, am I just trying to convince myself I don't have type 2??

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Hello @rg2203,

First of all, welcome to the forum.

Hugs to you -- I remember how shocked I was a diagnosis (and I definitely expected it unlike you) and how hard it was to accept that I had diabetes. Without wanting to sound melodramatic, it almost felt as if life as I knew it was over.

I also agree with you -- it would be nice if we were treated like adults and told which tests are done and why.

This being said, it is still probably a good thing that these tests were done and you were alerted early to the problem re blood sugars. The real issue is that high blood sugar levels in the long run can cause a lot of organ damage. Having caught it now, probably means you may be able to avoid most if not all of these complications -- and this is what really matters imho.

So, in some sense a lot of us feel diagnosis has been a blessing in disguise. It has enabled us to something about this and has provided an impetus to learn about what causes high blood sugar levels and what to do about it.

Many of us have been diagnosed with much higher blood sugar levels (yours is barely in the diabetic range) and have been able to return to truly normal blood sugar levels by changing diet and cutting out most carbs. (Personally my HbA1c was 100 mmol at diagnosis five years ago and it has since been at at normal levels (29 mmol to 36 mmol) ever since. Of course, exercise in addition to diet changes helps, but diet is definitely the more important of the two.

As to further testing, difficulty loosing weight in spite of leading an active life, might point towards high insulin levels and associated insulin resistance -- a hallmark of T2 diabetes. Is there any reason that you suspect MODY?

So, again welcome to the forum. Have a read around and ask any questions you may have. There are loads of friendly, helpful and very knowlegeable members around to help you out.

Hi and welcome to the forum.

You need to test before you eat and 2 hours after the first bite. As to what to eat check the link in my signature.

rg2203 said:

Also to add, since I received my diagnosis I have been tracking my blood sugar (I forgot over the weekend though!)

15/07 @ 12pm (fasting) 3.7
16/07 @ 8.30am (non fasting) 6.9
20/07 @ 12pm (non fasting) 7
21/07 @ 8 am (fasting) 5.8

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Wonderful to see you have a meter. These blood sugar readings look quite good. However, some of the fasting levels are still in the pre-diabetic range.

As @xfieldok suggests more systematic testing (rather than just fasted testing) will be much more helpful in the long run by showing how you react to different types of food.

Hi, I assume you have a meter, you should test your meals so you can make adjustments to your diet. Test just before, and two hours after.

your numbers are low, maybe all you need is small adjustments, I had to totally change my lifestyle

rg2203 said:

Thank you so much for your kind message. In terms of the above, my mum (who is also diabetic) works at a GP surgery that specialises in Diabetes. She spoke to one of the doctors on my behalf and said that considering my age, diet and exercise regime, it is a straigt forward type 2 diagnosis based on 2 tests is probably not correct. He was the one that suggested that it may be MODY. I don't know a lot about it. I'm hoping that I don't have to wait too long for my referral to come through so I can speak to a specialist (Definitely not my gp!)

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Yes, I agree you are quite young to be diagnosed with T2. It used to be known as a disease of older people, but nowadays even kids are diagnosed with T2 -- this virtually didn't exist just a few decades ago.

A hint that it might be MODY, apart from your age, is an extensive family history of diabetes with most family members diagnosed at a young age. So, it is probably worthwhile testing.

You might also want to have a look at the website https://www.bloodsugar101.com/. Apart from being extremely informative, Jenny Ruhl, who is the author of this site, has also been diagnosed with MODY. So, you might find some helpful information on there.

Bloodsugar101 has been one of the first websites I found after diagnosis and it's been really, really helpful.

rg2203 said:

Thank you so much for your kind message. In terms of the above, my mum (who is also diabetic) works at a GP surgery that specialises in Diabetes. She spoke to one of the doctors on my behalf and said that considering my age, diet and exercise regime, it is a straigt forward type 2 diagnosis based on 2 tests is probably not correct. He was the one that suggested that it may be MODY. I don't know a lot about it. I'm hoping that I don't have to wait too long for my referral to come through so I can speak to a specialist (Definitely not my gp!)

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Just another thought, @rg2203. If they are willing to test you for MODY, would they also do a fasting insulin test or even better still a OGTT (Oral Glucose Tolerance Test) with glucose and insulin levels. This might give you a lot of insight into what is really happening.

rg2203 said:

Thank you so much! My mum has also been diagnosed with diabetes I think she was about 40 when she first had her diagnosis although it was likely to be around much before then.

I will check out the website!

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So, MODY is a real possibility then. So, it's good you having this checked out.

rg2203 said:

I'm writing all this down haha. I need to go armed with as much information as possible. I do have private health cover, I'm just waiting back to hear if they will cover this (they do cover the stabilising of long term conditions like diabetes so I should be ok) If I am covered and go private, I will probably be able to ask for a lot more tests than NHS will do.

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Hi @rg2203,

This is wonderful news.

I am convinced that for the NHS (and similrlypublic health insurance -- as this is the system in Germany where I'm from) not doing some of these tests, is trying to save money at the wrong end. Knowing exactly what you are dealing with helps making the appropriate decisions in dealing with this -- and this is not considering the human costs of an incorrect diagnosis.

So keeping my fingers crossed that you'll convince your incusrance to cover these tests.

Just a thought, but could you have PCOS?

rg2203 said:

Also to add, since I received my diagnosis I have been tracking my blood sugar (I forgot over the weekend though!)

15/07 @ 12pm (fasting) 3.7
16/07 @ 8.30am (non fasting) 6.9
20/07 @ 12pm (non fasting) 7
21/07 @ 8 am (fasting) 5.8

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According to the WHO a morning fasting bg of 5.6 is indicative of pre-diabetes.

Would you like to give more details of your diet? As I know to my cost, a "healthy" diet is not necessarily healthy for everyone. I have changed from my preferred "Mediterranean" low fat diet to a low carb one to try and control my blood glucose.

ziggy_w said:

would they also do a fasting insulin test or even better still a OGTT (Oral Glucose Tolerance Test) with glucose and insulin levels

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And / or a c-peptide test.

rg2203 said:

I have been to the doctors regularly complaining of not being able to lose weight (infact despite exercise and diet I seem to put on more!) as well as extreme tiredness and headaches.

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Weight gain is a symptom of insulin resistance. And makes it very difficult to loose weight.

rg2203 said:

Yes, of course. I'm not disagreeing that I have high blood sugar, just questioning if it is for certain type 2 or if it is in fact MODY.

My diet mainly consists of lots of vegetables. In the morning I do generally have 2 wheatabix. Lunch times salad, cold meats etc. Evening meal salads, warm meat, feta cheese, a lot of baked broccoli, occasional steak, fajita chicken, grilles halloumi and veg kebabs etc. I'm conscious of carbs so not too many potatoes/root vegetables.

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Hi, Do you ever have anything other than cereal for breakfast?
2 Wheatabix (with milk) even with no added sugar isn't exactly low in carbs I think it's around 38gms.
Some people (including me) find that breakfast is the worst time of day to eat carbs.
How about trying a meat, fish or Egg based breakfast instead?