Gck Mody

[sarah k]

How do you actually find out which is the right way to go with how your treated?
The diabetes clinic at the hospital say no treatment unless I’m pregnant (I’m a Granny now so no more kids for me because that would just be odd).
My GP wants to put me on metformin (last bloods came back at 46 or 48 can’t remember which but the only just tipped over to diabetic one as I understand) but the hospital explained that if I was on medication my body would fight to keep at the higher level it’s used to so it would be a loosing battle.
Now the retinopathy says there’s changes in the eyes (first test so no ones explained anything just a letter saying changes) caused by high blood sugars (but mine aren’t that high).
Loosing weight doesn’t make any difference to my sugar levels on my yearly tests. I be tried the LCHF but have continued to gain weight (I took carbs lower than suggested because at 120-150g that’s more than I’d normally eat.
It probably doesn’t make sense (like it doesn’t to me) but who’s right, GP or hospital and I’m thinking there’s not much I can do to help my eyes.

 

[DCUKMod]

How do you actually find out which is the right way to go with how your treated?
The diabetes clinic at the hospital say no treatment unless I’m pregnant (I’m a Granny now so no more kids for me because that would just be odd).
My GP wants to put me on metformin (last bloods came back at 46 or 48 can’t remember which but the only just tipped over to diabetic one as I understand) but the hospital explained that if I was on medication my body would fight to keep at the higher level it’s used to so it would be a loosing battle.
Now the retinopathy says there’s changes in the eyes (first test so no ones explained anything just a letter saying changes) caused by high blood sugars (but mine aren’t that high).
Loosing weight doesn’t make any difference to my sugar levels on my yearly tests. I be tried the LCHF but have continued to gain weight (I took carbs lower than suggested because at 120-150g that’s more than I’d normally eat.
It probably doesn’t make sense (like it doesn’t to me) but who’s right, GP or hospital and I’m thinking there’s not much I can do to help my eyes.

Hi Sarah - You don't actally say what you're doing at the moment regarding your diabetes. Do you watch yourr diet? What sort of things do you eat on a typical day, and when you went LC, what sort of meals were you having then, and roughly how many grams of carbs did it add up to?

 

[sarah k]

At the moment nothing, just watch what I eat, I lost about 4 stone before having my knee replaced and my bloods came back higher than when I was heavier, once I started to put weight on (not intentionally) they went down a tiny bit until this year.
I was aiming to have around 60g carbs but it made me feel really rubbish plus I was gaining weight at a faster rate.
I’ve just started to to go back to WW (so I have a stop point food wise as I tend to emotionally eat) but I pretty much eat the same everyday. Today’s been Frozen Raspberries with Greek yogurt for breakfast, a bacon and mushroom omelette (3 eggs, 2 bacon) for lunch and a chicken breast with salad and 150g potatoes made into oven chips.
Apparently weight doesn’t affect GSK Mody (but after a knee replacement at 39 and arthritis in my spine and both hips it won’t help that) and it’s not supposed to carry the risks of Diabetes (so my eyes has confused me as my bloods are only slightly into the diabetic range) and it’s not supposed to need treatment because (so I’ve been told by the hospital) my body will just keep pushing my bloods up to the level above normal that it likes to run at
(Hope that makes sense) so really I have the best form because it’s not really diabetes.
But as I said my GP wants to start Metformin (I find out in about 10 days when I go back for my results) which I don’t want to do because (as I understand it) my bloods will keep going up, and then there’s the eye changes which I don’t understand as my bloods aren’t really high. Could it be scaring from burst blood vessels last year (a whole group of them burst at the very top of my eye which gave me a very blood filled red eye).
I’m not very good at explaining it (tramadol brain) but hopefully it makes it clearer why I’m confused.

 

[Rachox]

Hi Sarah,
My knowledge of MODY is limited to what I have read here:
https://www.diabetes.co.uk/diabetes_mody.html
However just a couple of points, I’m on Metformin, and I’m sure although it only helps a little towards lowering my blood sugar levels, it has worked as an appetite suppressant, so since I was diagnosed in May ‘17 I have lost a shed load of weight on it along with low carb eating. The low carb eating I believe is the major contribution to my now normal blood sugars and HbA1cs.
Your menu you’ve quoted is very low in carbs except for the 150g of potatoes! I can only get away with one small (35g) roast potato without getting a spike in my blood sugar, maybe MODY is different. Do you test your blood sugars at home at all?

Edit to add, I have arthritis too and it’s made a huge amount of difference to my joints not just my weight bearing joints, but my neck and hands too, I think due to the anti inflammatory effect of the low carb eating.

 

[kitedoc]

Hi @sarah k,
It may be important to find out exactly what the eye specialist thinks is the cause of your eye problems.
It could be the diabetes but maybe there are other factors like ? blood pressure etc etc.
Until you and your other doctors have a better idea of what is causing what it is difficult to pin point what may help your eyes or at least slow down any progression, there it is going to be difficult to know what to do.
Diabetes-wise i sense losing weight is a battle for you. In addition to the low carb diets etc ( and ensuring in that diet you are taking in sufficient protein, minerals and vitamins etc - something a dietician could help you with), Metformin may be of help to some (as @Rachox points out above).
Another 'tack' may be to think about 'bowel bugs". - Think for a moment about making yoghurt - you take milk, heat it, add 'bugs' of a certain type and then enjoy the product. If the incorrect 'bugs' are used the results are something that looks and tastes vile and is unlikely to be healthy.
So it has been shown that the 'right' bowel bugs improve diabetes and wrong ones make it worse. Sources of foods reputed to have good bowel bugs ( these foods are collectively called 'pro-biotics') include live culture yoghurt, sauerkraut, tempeh (the refrigerated variety is low in salt) as examples and the food for these 'probiotics are called 'pre-biotics' and include onion, garlic and the like, berries and honey (both In moderation) dark chocolate, Jerusalem and other artichokes, apples (in moderation) etc.
You should of course check such additions to your diet out with your doctor/nurse,/dietitian.
I do hope you find ways to improve your health and what forum members have provided is all of help.
You might, on the basis of your eye troubles, be eligible for a glucose meter to measure your blood sugar levels. If so, or you find a cheap reliable model to purchase (others on here know the best brands) and you take advice about WHEN is/are the best time(s) to check your blood sugars, that might help you with what foods etc suit you best.
With HBA1C - that is a measurement of the amount of sugar in your blood which accumulates on the haemoglobin - a natural substance in our blood cells which makes blood red. ( do not know how royals are supposed to have blue blood - that is beyond my (retired) pay grade !!!). The higher the amount of sugar in the blood over the life of a red blood cell, which is about 100 days, the higher the HBA1C reading BUT if one's blood sugar has been yo-yoing say from between 4.0 mmol/l and 12 mmol/l the average over the 3 month ( = approx. 100 days) may well be about 8 to 9 mmol/l) The question is whether it is the levels above say 9 mmol/l (among other things) which might over time be affecting your eye health.
The level of 46 to 48 you quoted are probably your HBA1C test results as they report these in different ways to blood sugar levels. See what your doctor says is the ideal target level for you.
Best Wishes !!

 

[sarah k]

Thank you both for replying, yes I do and always have struggled with my weight but hopefully I’ll get it down again.
My bp is usually on the low side and my cholesterol levels were great when they were checked last (which I was surprised at with being a chunky person).
Hopefully on Friday things will be a bit clearer for me. Luckily the gp I’m seeing specialises in diabetes and used to be my sister and brothers gp (both Mody too) so she has a great family medical history. I hope she can explain the retinopathy results to me (which worries me the most).
I don’t check my bloods at all so maybe I should get myself a meter and start testing for a better picture of what’s going on.

 

[Boo1979]

Some varients of Mody respond well to a low dose of a sulfonylurea and continue to do so for decades -it depends on the particular gene variant of which there are several. Other Mody gene variants require more aggressive treatment while others need no medical intervention - we are still in the fairly early stages of understanding the different genetic changes and their expression
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3363133/

 

[phoenix]

According to specialists, Gck MODY doesn't normally benefit from treatment. The fault is that the mechanism that detects higher glucose and initiates the release of insulin is set a bit higher than normal.Your body will try to maintain that level which is 'normal' for it. It is very unusual for someone with this type of diabetes to develop serious complications, even after many years with persistently raised fasting levels. The problem will have been present since birth but diagnosis often only happens after routine testing. (so many people have it for decades before diagnosis)
https://www.diapedia.org/other-type...41040851237/mody-due-to-glucokinase-mutations

Nevertheless, a person with Gck MODY is not immune to developing insulin resistance " It is possible for an individual with a change in the GCK gene to develop other types of diabetes that require treatment. Patients have the same risk of developing Type 2 diabetes as other members of the general population. Type 2 diabetes is common in older people especially if they are overweight and can need tablet or insulin treatment."://www.diabetesgenes.org/what-is-mody/what-is-glucokinase-gck/
So you need to get your GP to explain his rationale for suggesting Met and if possible ask the specialist if he agrees.

 

[sarah k]

Thank you both for your reply, it was picked up on a routine blood test about 11-12 yrs ago as I was never tested when pregnant even with my mum having gestational diabetes with all 3 of us (I had small babies 6.01lb and 7.08lb so they weren’t concerned).
It was only this year they did the genetic testing. I suppose 42yrs of being over weight (I have been thin twice but struggle to stay there as I’m an emotional eater) so I probably have tipped over the edge to type 2. I’m seeing my gp Thursday for my latest results and I’m pretty sure I should soon be due a 6 month diabetic clinic review in the next couple of months.
I think I’m going to see if my gp will let me have a test kit so I can have a better idea of what raises my bloods and can try to keep them as low as possible (I know they don’t like type 2 testing unless moved onto insulin) if they say no I’ll go pick on up anyway. Might be my best way forward.

 

[sarah k]

UPDATE- I’ve pulled it back, HBA1C 46. Dr was happy, I was happy and to top it off this week I’ve lost 5.5lbs.
At least at the moment I don’t need to panic (I might actually get a full nights sleep now) and it’s given me the kick up the backside to sort this out.
Next test in March