Any one with MODY being treated with Metformin?

[Gambit62]

I didn't inherit the MODY gene but it runs in my mothers side of the family - my brother drew the short straw and does have the MODY gene. They started off by assuming he was type 2 and put him on metformin to which he didn't respond - but did respond when switched to drugs the right drugs.

I was rather shocked last week when I looked through my mothers medication and found out that she was on metformin as she has MODY, but may be it is possible to have MODY and be type 2 and that is why she is on metformin.

I suffer from an inability to absorb B12. There is an awful lot of overlap between the symptoms of B12D and diabetes when it comes to cellular damage and neuropathy and I'm a bit concerned that my mother may have undiagnosed problems with B12D going on - her memory is bad (yes, no that could be age and diabetes), she gets confused, has been suffering from endless infections (currently left with no hearing as she battles with a series of ear infections) and she recently developed a bleed that sounds like it could be endometriosis (has thickening of the womb), her gait reminds me of mine before I got my B12 treatment sorted out ... When I went through her meds she was on 4 drugs which are known to potential suppress absorption of B12 - my grandmother - mother's mother - had a lot of symptoms in her last few years that now make me wonder about B12D - including depression, a stroke, and muscle spasms - admittedly she was 94 and B12D gets more likely with age ... but my grandfather - from whom my mother inherited the MODY gene had problems with dementia that may me wonder if B12 was implicated, particularly as there is a strong correlation between diabetes and B12.

Anyway, in the process of writing to my mothers GP but just wondering if anyone knows if it is possible to have MODY and type 2 ... or has some practical experience of overlap of MODY and B12, or even type1 and B12

[LibreLlama Volunteers]

Hi Gambit62

I know two people that have MODY, but both have been treated with multiple daily injections of insulin (basal bolus regimen) since they were diagnosed.

It's such rare form of diabetes though, and from the information in your posting there are many other health, genetic and medication factors to take into consideration. You've done the right thing by writing to your GP, as this is definitely a question for a healthcare professional to deal with. If the GP is unable to satisfactorily answer the question. I suggest you try to make an appointment with a consultant physician in diabetes at your local hospital by contacting the diabetes clinic.

There isn't a lot of information about MODY online, but DUK do have this page on their website

diabetes.org.uk/Guide-to-di...

Hope that helps a bit.

[Gambit62 in reply to LibreLlama]

Thanks very much for your reply - and particularly the possibility of asking for a consultant's appointment. My mother has regular appointments at diabetic clinics but from what I heard last Thursday when taking my mother to the hospital for another problem which I doubt could be related to diabetes it does sound as if she is struggling to control the diabetes - was complaining that the bloodsugar was always high when she took it - which is the problem my brother had before his medication was switched.

Got a little put off by the gaenocologist my mother saw who flat out told me that MODY was a form of type 2 daibetes and refused to amend her notes to say that my mother had MODY ... just a moan.

Have just finished redrafting letter and will run it by a friend tomorrow and then take it in to the surgery - have asked for a review of medication but haven't asked about referring to a consultant ... yet. Have also asked about getting her B12 levels checked - to be honest it is a bit beyond me why it isn't done regularly for people of her age as it would pick up on so many problems before they became irreversible.

[LibreLlama Volunteers in reply to Gambit62]

I completely understand the frustrations you must be having with this situation. As a person who has lived with Type 1 Diabetes for many years, I understand the constant challenges it presents and the many factors that can affect blood-glucose levels. All sort of things that people wouldn't even think of can affect these levels. Being unwell with anything from a common cold to a physical injury, hot and cold weather like summer and winter, stress, medications, hormone changes or things that can affect hormones, being out of my routine, which can be travelling, working away from home, attending a wedding or party, being in hospital. The list goes on. That's why I think spending some time talking to a diabetes specialist would be really helpful. Lots of healthcare professionals in non-diabetes related roles have no real understanding of diabetes, so dismiss it as something insignificant or easily managed. You have to challenge them. This is just as frustrating for diabetes specialist nurses and doctors that I know. You mentioned gynaecologist. I don't know why your mum is seeing one, but did you know that sexual dysfunction is another diabetes complication that does affect both men and women. I know it's an awkward subject, but have a look on the DRWF website drwf.org.uk under the information section and they have a digital and audio version of their sexual dysfunction leaflet. It might have some useful information or links. In fact some of the other leaflets may be useful too. Sorry to ramble on for so long, I guess the point I was getting to is diabetes is such a complex condition and speaking with an actual expert seem to be the most logical course of action, they can review you mum's case as a whole, lifestyle, medication, other medical factors, genetics, diet and see the bigger picture and where her MODY will fit in and how to manage and balance it alongside her other medical needs. I will keep my fingers crossed for you and hope you can get a referral. Keep me posted, I an genuinely interested in how you get on.

[Gambit62 in reply to LibreLlama]

Will drop the letter round to the surgery today and see how it goes - have a friend who goes to the surgery and so targeting a particular GP who seems to be much better at listening to patients than most of the others. Mum is up in London with my brother this weekend so that lets me off the hook there.

The gaeni problem sounds to me like it's probably endometriosis - she was having a biopsy - so poor thing is worried about cancer but isn't really going to admit it to people.

Interesting about the sexual dysfunction though I don't think that is a problem.

Doctors do seem to think that they can just follow rules these days - probably always did but it just seems to be worse now - never had much faith in GPs but having had the B12 problems - that's a condition that is even worse than diabetes - it can be a real battle to get doctors to realise that patients with an absorption problem need B12 and then the phials (which cost about 60p) are rationed so much that getting enough can be a real problem ... and there is so much mythology - unlike insulin and thyroid medication there isn't any risk of overdosing so it should be so much simpler but it just seems to be battles all the time for people. I gave up after they tried to palm me off as a depressive and started treating myself - fortunately injections aren't the only option and I find nasal spras work really well for me ... but it can be a bit sad to realise that they wasted about 40 years of my life through not picking it up and treating it.

Will update periodically.

[Gambit62 in reply to LibreLlama]

Just an update:

Mum is currently in hospital being treated for an ear infection, though the admission was a result of a hypo when she had accidentally been given too much insulin by the district nurse who was monitoring her sugar levels after she got so confused that neighbours in the sheltered flats where she lives got concerned and called paramedics.

Her blood sugar levels are all over the place and they are monitoring them closely and trying to figure out what are the best levels for her. I still think she's probably on the wrong medication and have mentioned this but as I haven't actually seen the doctor who is looking after her - just the nurse - not sure that it has sunk in.

The sharp increase in confusion seems to have co-incided with the start of the infection - so neither myself or my brother are convinced that blood sugar levels explain what has happened ...

The hypo was really scary and I think it really did scare my mother who was convinced she was dying when she was coming out of it after being given glucose by the paramedics that got called on Saturday lunch-time.

I had taken her to see the GP and got a memory assessment after problems with her wandering off at the hospital and getting lost when we went for the results of the biopsy (which turned out to be cancer) - so whole health situation is hugely complex at the moment and she is in the right place though I do worry that she continues to be treated piecemeal rather than doing a full workout and eliminating every possibility ... rather than working on the assumption that it's all down to something that is already there.

[LibreLlama Volunteers in reply to Gambit62]

Hi Gambit62

Sorry for the slow reply. I've been seriously ill for a couple of months and have only just started getting back to a normal routine.

How is your mum doing now? Well I hope.

Infections will always have an effect on blood-glucose levels, usually sending them higher, with the person it is affecting having to take corrective doses of insulin to bring them down. It all depends on the type and severity of the infection though. My sugar levels are affected by simple colds and bugs. My recent illness involved a serious infection and my blood sugars were well over 30mmols, despite me taking huge corrective doses to try and bring them down. This resulted in DKA as well as other issues, one of those being unable to function mentally.

Thankfully your mum has great neighbours and they phoned the ambulance. In that situation, being with the paramedics and taken to hospital was the best option. Bless her, hypos are scary, especially for people that don't experience them regularly. I really feel sorry for her. It's a horrible thing to cope with.

Like you say, the situation is complex and she is in the right place. It's often the case that different departments don't communicate fully when it comes to diabetes. Have you had any conversations with the diabetes physicians?

[Gambit62 in reply to LibreLlama]

Sorry to hear that you have been ill. Infections can really knock you out.

Mum is now in local cottage hospital - she spent nearly two weeks in main hospital being treated for ear infection and having her diabetes and blood sugar monitored.

Her mental state is very bad and last I heard was that they couldn't discharge her from the cottage hospital until measures were in place to administer her insulin as the OT had done a trial and she wasn't always getting the levels right ... and hasn't been changing the needles on her insulin pen because she has problems getting them off.

She can remember facts but just can't use them so decision making etc is pretty naff - but then that has been building up for a long time,

She's booked in for hysterectomy in a couple of weeks.

[Gambit62 in reply to LibreLlama]

Found out today that mum has been taken off metformin (stopped a week ago) - bit of a relief to say the least.

They are trialling insulin once a day to see if that will work as district nurse can only come in once a day.

She does seem to be a little more aware of her diet and thinking about things that she shouldn't be eating ... but its often very difficult to separate what she thinks is going on from what is really going on so just have to wait and see.

Next big hurdle will be hysterectomy then may be things will start to get a bit simpler again.