New member with complex situation

[sheilaKimberley]

Hi
As far as we know I have Mitochondrial diabetes which is being treated as type2 although not terribly successfully. I need to lose a lot of weight but have the fatigue that goes with Mitochondrial disease (a bit like CFS/ME) it is worsened by cutting carbs and also my blood glucose shoots up.
I am taking Apidra short acting insulin and Humulin I long acting insulins but taking quite high doses. I am exercise intolerant and need a wheelchair due to a neurological problem, it's complicated. As well as the carb problem I have problems with fats in anything more than small quantities (gall bladder removed).
I heard today of once a week injections that aim to suppress appetite and wondered if anyone has experience of these. As a Mitochondrial patient there are a number of drugs that are toxic to me like Metformin, statins, steroids, Propafol (aneasthetic) etc so we have to be aware of what goes into these new drugs.

 

[SueEK]

I’m so sorry for all your conditions and how difficult it must be for you. I have absolutely no advice I’m afraid but just wanted to say hello, welcome and I hope someone on the forum may be able to offer some advice. Wishing you well. Sue

 

[sheilaKimberley]

I’m so sorry for all your conditions and how difficult it must be for you. I have absolutely no advice I’m afraid but just wanted to say hello, welcome and I hope someone on the forum may be able to offer some advice. Wishing you well. Sue

Thanks Sue, just read your list of meds, not sure if there is enough space on the page for mine! Trying to stay positive.

 

[SueEK]

Nobody can ask more than that Sheila and I hope someone can be of help to you, everybody is really nice on this forum and will answer your question if they can.

 

[CathyB]

Hi Sheila and welcome. Sounds like you have a lot to deal with so with my limited knowledge I’m not going to try and give advice but hope that someone else might be able to help. Sending you a big hug 🙂

 

[sheilaKimberley]

Hi Sheila and welcome. Sounds like you have a lot to deal with so with my limited knowledge I’m not going to try and give advice but hope that someone else might be able to help. Sending you a big hug 🙂

Thanks Cathy.

 

[TheClockworkDodo]

Hello @sheilaKimberley and welcome to the forum 🙂

Can I ask how long you've been diagnosed with diabetes, and did they test you for type 1 when you were diagnosed, or did they just decide to treat you as type 2 because you're an adult who needs to lose weight? I ask because the latter seems to happen quite often - we've quite a few people here who didn't respond to treatment for type 2 because they were in fact type 1, and I'd have thought with Mitochondrial disease you'd be at risk of type 1, so if they haven't tested you for it, do ask why not, and see if you can get a GAD antibody test done.

It's good that they've put you on insulin, but it's possible that other insulins might be more suitable for you (the ones they've put you on tend to be used in type 2 and there are several different ones which are more often used in type 1), so don't assume they are the only options. Adverse reactions to insulin are rare (thankfully - I react badly to a lot of other meds too) so it shouldn't be a big risk to try others if the ones you've got aren't lowering your blood sugar enough or aren't flexible enough for you.

I have ME and my type 1 is, I'm pretty sure, secondary to that. I also find the two conditions not very compatible, I imagine in similar ways to you! I can't exercise very much, though I do find that a small amount of exercise goes a long way so far as my blood sugar is concerned. Is there anything you can do in your wheelchair, eg gentle stretches, which might help with your blood sugar without harming you in other ways? And can you get outside at all? For some reason - I think because it's relaxing and stress raises blood sugar - going out into the garden lowers my blood sugar, even if I'm just sitting there and not actively gardening (not that I ever exactly garden actively, but I do garden gently a bit when I can). Resting lowers my blood sugar too - complete rest, I mean, no computer or TV or anything, just lying still in a dark room and doing something like breathing exercises to relax makes my blood sugar go down if it's high.

Food wise, I have a problem with fats too, and I can't stop eating carbs - I've tried more fat and I've tried fewer carbs and neither work for me at all. I find I tolerate yogurt better than other fats, so I eat full-fat yogurt twice a day, and that's about it. Carb-wise, can you stick to the ones which are slower-acting, eg brown or granary bread, brown rice, boiled potatoes, jumbo oats - and eat small amounts several times a day rather than eating big meals with lots of carbs? And mix them up as much as possible with plenty of protein to slow the effect down even more, so you're not just eating carbs on their own? What can you tolerate in the way of veg, and could you eat more veg and less fruit?

You probably know this already, but drink loads of water, if you can (2-4 litres a day). It will lower your blood sugar and also reduce your appetite.

I don't know anything about appetite supressants, I'm afraid (am slim diabetic). I'd be very wary of anything like that when you're so intolerant of so many drugs though, I know how risky that is from my own experience - I hate trying new drugs, I so often react badly to them.

I'm going to tag @AJLang because she's got a lot of experience of juggling diabetes with other things (she also has ME and various other health issues), @mikeyB who is a former GP and a wheelchair-user, and @pottersusan who is also very complex medically and has issues with eating fat - hopefully at least one of them will see this and have some more ideas for you.

 

[sheilaKimberley]

Hello @sheilaKimberley and welcome to the forum 🙂

Can I ask how long you've been diagnosed with diabetes, and did they test you for type 1 when you were diagnosed, or did they just decide to treat you as type 2 because you're an adult who needs to lose weight? I ask because the latter seems to happen quite often - we've quite a few people here who didn't respond to treatment for type 2 because they were in fact type 1, and I'd have thought with Mitochondrial disease you'd be at risk of type 1, so if they haven't tested you for it, do ask why not, and see if you can get a GAD antibody test done.

It's good that they've put you on insulin, but it's possible that other insulins might be more suitable for you (the ones they've put you on tend to be used in type 2 and there are several different ones which are more often used in type 1), so don't assume they are the only options. Adverse reactions to insulin are rare (thankfully - I react badly to a lot of other meds too) so it shouldn't be a big risk to try others if the ones you've got aren't lowering your blood sugar enough or aren't flexible enough for you.

I have ME and my type 1 is, I'm pretty sure, secondary to that. I also find the two conditions not very compatible, I imagine in similar ways to you! I can't exercise very much, though I do find that a small amount of exercise goes a long way so far as my blood sugar is concerned. Is there anything you can do in your wheelchair, eg gentle stretches, which might help with your blood sugar without harming you in other ways? And can you get outside at all? For some reason - I think because it's relaxing and stress raises blood sugar - going out into the garden lowers my blood sugar, even if I'm just sitting there and not actively gardening (not that I ever exactly garden actively, but I do garden gently a bit when I can). Resting lowers my blood sugar too - complete rest, I mean, no computer or TV or anything, just lying still in a dark room and doing something like breathing exercises to relax makes my blood sugar go down if it's high.

Food wise, I have a problem with fats too, and I can't stop eating carbs - I've tried more fat and I've tried fewer carbs and neither work for me at all. I find I tolerate yogurt better than other fats, so I eat full-fat yogurt twice a day, and that's about it. Carb-wise, can you stick to the ones which are slower-acting, eg brown or granary bread, brown rice, boiled potatoes, jumbo oats - and eat small amounts several times a day rather than eating big meals with lots of carbs? And mix them up as much as possible with plenty of protein to slow the effect down even more, so you're not just eating carbs on their own? What can you tolerate in the way of veg, and could you eat more veg and less fruit?

You probably know this already, but drink loads of water, if you can (2-4 litres a day). It will lower your blood sugar and also reduce your appetite.

I don't know anything about appetite supressants, I'm afraid (am slim diabetic). I'd be very wary of anything like that when you're so intolerant of so many drugs though, I know how risky that is from my own experience - I hate trying new drugs, I so often react badly to them.

I'm going to tag @AJLang because she's got a lot of experience of juggling diabetes with other things (she also has ME and various other health issues), @mikeyB who is a former GP and a wheelchair-user, and @pottersusan who is also very complex medically and has issues with eating fat - hopefully at least one of them will see this and have some more ideas for you.

Wow! Thank you so much for all that guidance, so appreciated.
I am guessing I was tested for type 1 but will see if that is the case and maybe ask for the test for type 1. That would make a lot of sense to the situation. That said, I was in hospital just over a year ago for gallbladder op and they didn't give me any insulin in the 4 days I was in and hubby says that things would have gone badly wrong if I was type 1.
I have tried wheeling in my wheelchair which was OK for smallish trips to town until the day I got caught on some rough streets and have been nursing a rotator cuff injury since January - ultrasound tomorrow. On a good day I can normally manage around 30 minutes but have to rest up before and afterwards.
I try to eat slow acting carbs as much as possible and love oats etc, although I am gluten intolerant along with nuts and fish (a ll the good stuff!) so it's hard eating around those constraints. I like veg and salads but find many fruits cause colic pains except for berries and grapes, apricots.
I have to drink plenty with the Mitochondrial disease and easily dehydrate so cannot drink tea or coffee, but do have mint tea and Red Bush ( no caeffine) tea by the pot full.

 

[pottersusan]

Hi @sheilaKimberley
I must confess that I've found dietitians as helpful as the proverbial chocolate teapot!
I shouldn't eat too many carbs cos I'm diabetic
I shouldn't eat too much fat cos I don't digest it properly
I need to eat calorie dense food cos I haven't got much capacity
Which foods are calorie dense?... Carbs and fats. I may cause serious injury to the next doctor who says 'you're on a pump so it's easy to manage your carbs' 😡
I'm sorry I have no answers for you. I fear we 'complex cases' have to find our own salvation .. With a little help from our friends on the forum (far more use than the 'experts' )

 

[sheilaKimberley]

So pleased to meet another difficult customer!

 

[Madeline]

Hi, I’m difficult too, welcome to the sub-club. I have severe brittle asthma and think my diabetes is probably steroid induced. Am on high dose steroids 3/4 of the year, which plays merry hell with the old blood sugars.

 

[sheilaKimberley]

A sub club sounds good! With such a target driven culture it's easy to forget that real people have complex issues health-wise. We can't all fit into a box, achieve target blood sugars and be fit and healthy bunnies.

 

[TheClockworkDodo]

Yes, I find diabetes consultants look askance at me when I tell them that because of my ME I can't do whatever it is they want me to do - they seem to be a bit clueless about how illnesses interact with each other, and about everything else other than their own specialism. Thankfully the nurses and general doctors I've seen have been much more realistic, but I carry a complex card just in case I get an idiot!

There are (at least) two types of type 1 - your husband would be quite right about the standard type 1, it develops very quickly and once you've got it you need insulin immediately and after that you need it constantly. But there is another type, which is sometimes referred to as type 1.5 or LADA (latent auto-immune diabetes in adults ... I think, something like that anyway), which is basically slow-onset type 1. It's often misdiagnosed as type 2 at first, because a lot of GPs just haven't come across it and/or don't realise adults can get type 1 at all. People with that do survive without insulin in the early stages (sometimes for months, sometimes even for years) so although being able to go without insulin in hospital does make it sound more likely that you have type 2, it doesn't completely rule out slow-onset type 1.

Sorry about the rotator cuff injury, that must be so frustrating, not to mention painful

Berries are the best fruit for most diabetics so I'd stick to those and as much veg and salad as you can eat, and abandon the grapes, as they are little sugar bombs - though I appreciate it's difficult having to cut more foods when there are already so many you can't tolerate.

I drink mint tea and redbush tea as well 🙂

 

[sheilaKimberley]

Thanks for the link to the 'complex card' I've ordered a selection that I will put together and carry around. I do have a hospital information page which is forever going out of date so these will be handy. I'll also explore the possible type 1/1.5 test which could be interesting.