Hospital Appointment Monday...

[lizabetic]

So I have a Hospital appointment with my Endo this monday.
I plan to discuss the whole MODY possiblity.

Finally my mum gets it after stating she 'thought I was type 1 but didn't eat enough'... So i had to explain to her 'No if I was my pancreas wouldn't work at all, and i'd be constantly high', rather than just after eating 🙂
This just shows how terrible everything has been since the start! Nothing has ever been explained to us

Anyhow, i'm presuming they'll HOPEFULLY refer us to a special clinic or something. I really freaking hope they don't want to 'fix it' there and then. Sort of sick of being a guinea pig and just want people to know what they're doing for a change.

Something i'm really pretty worried about though is whether or not I can be helped. I don't want to have to unnessecarily go on pills or insulin.
I've ordered myself a GI diet book yesterday which I feel is the first step towards better control.
Thing is considering I hypo fairly easily then surely on drugs then that would be much more of a risk and same with insulin since I don't need more - I just need it to sort me out quicker I suppose!

Does anyone know of diabetes drugs which don't 'stimulate' the pancreas to produce more insulin but help the insulin to be absorbed correctly or whatever it has to do?
I've read up about sulfonylureas which I thought did so however I found they too stimulate the pancreas.

 

[Northerner]

Hi Liz, I hope you find some answers, or at least are set on the path to finding some out. I think that most of the healthcare professionals will have little knowledge of the more challenging and rare ways that diabetes can present itself. Most GPs will only ever have encountered Type 2 diabetics, a few may have some Type 1s on their books, but from there the possible causes and treatments will need the specialist knowledge of a consultant.

We have a couple of people at the moment who are proving difficult for the doctors to give a firm diagnosis, so you are not alone! Also, Nikki (sofaraway) is MODY and manages her diabetes well, so I'm sure that, if this is the case with you, then an appropriate treatment regime can be found. Stand your ground and make sure they appreciate the difficulties you are having - take whatever results you have been recording with you.

As for medication, metformin (a biguanide) does not stimulate the pancreas to produce insulin.

Good luck, please let us know how you get on! 🙂

 

[Blythespirit]

Hi Lizdiz,
Just wanted to wish you good luck at the hospital on Monday. I hope you get listened to and that they can help you get things sorted.

I have my first hospital appointment on Monday too after being T2 for over 7 years and thing suddenly going haywire. I'm currently on Metformin and Gliclazide but my BG is constantly high, so I was interested to read your comment about that. I'll keep my fingers crossed for you if you keep yours crossed for me! 🙂 XXXXX

 

[lizabetic]

Hello, I didn't want to make a new topic, I hope that this is okay 🙂

Well, I had my appointment. Most strangest one yet, there was like 5 different medical people plus me and mum in the room. 2 were students, then two doctors and a nurse. haha.

Had my medical history read out to me, he didn't know I still wasn't on medication.

Basically he thinks its slow onset Type 1? Which would be LADA right? But yet I don't have GAD-antibodies, and he said that. Plus theres no reason for the highs I got when first diagnosed, I was 15 then.

I just really do not understand how that is possible at all. Slow onset is presumably found in over 25s? I'm 19!!
I got the impression that he's not much of a 'believer' in MODY, or a bit scepticle about it since one of the students said about it and he was like "That happens in 1 in a Million" so yeah?

I don't know i'm just so confused, and my mother isn't that helpful since she believes he could be right.

Anyhow - he's sending me for an ultrascan on my pancreas and requesting a dietician.

 

[shiv]

Is it possible to politely request a second opinion? If he isn't a believer in MODY then it's highly unlikely he would push to rule it out, it sounds as if they just want to dismiss the idea?

 

[Northerner]

Is it possible to politely request a second opinion? If he isn't a believer in MODY then it's highly unlikely he would push to rule it out, it sounds as if they just want to dismiss the idea?

I agree, it's nonsense to dismiss it out of hand, since it is a proven form of diabetes that can explain 'non-standard' symptoms. Just because it's rare doesn't mean it doesn't exist! I'd want a second opinion too. Maybe if the further tests you're having done don't explain things then they'll be more receptive to the possibility?

 

[lizabetic]

I really hope that the tests might help and rule out things. Theres a lot of small things that add up to perhaps being a MODY especially considering its a life long thing rather than sudden onset.

Do you happen to know what exactly they'd be looking for in a pancreas ultrasound scan?

 

[Northerner]

I really hope that the tests might help and rule out things. Theres a lot of small things that add up to perhaps being a MODY especially considering its a life long thing rather than sudden onset.

Do you happen to know what exactly they'd be looking for in a pancreas ultrasound scan?

Sorry Liz, I don't really know - hopefully someone here will! 🙂

 

[margie]

If they said why they were doing the ultrasound - but it got lost in the fog of the appointment your Mum might be able to help. If not - did you see a DSN? You could contact them and they could find out for you - or call the consultants secretary and explain that you are confused as to why they are doing the test and could the consultant / secretary call back and let you know.

 

[lucy123]

Hi Liz,

I have just had an ultrasound scan which was to rule out an insulinoma (?). This can be another cause of hypos etc apparently which I was having.

I have recently been diagnosed and it was found I was producing 15 times more insulin than I should have been - so far I have been put on Metformin which seems to be working , but the GP and consultant are fighting to get me put on Byetta.

I am a type 2 though - or at least I think I am! so not sure how helpful this is,.

What i will say after 4 months of concern and trying to convince the GP and nurse I finally got my answer - if you have a gut feeling about something, the chances are Liz you are possibly right, so don't give up until you get the answers. Good luck and keep us informed🙂

 

[Mark T]

I really hope that the tests might help and rule out things. Theres a lot of small things that add up to perhaps being a MODY especially considering its a life long thing rather than sudden onset.

Do you happen to know what exactly they'd be looking for in a pancreas ultrasound scan?

My best guess would be that they might be looking for pancreatitis.

 

[lizabetic]

Thankyou Lucy,

I would pressume that would be the case for me as well since I told him I still hypo without medication.

Will be interesting to see I suppose.

 

[Mark T]

...which was to rule out an insulinoma (?). This can be another cause of hypos etc apparently which I was having...

Interestingly enough Wiki (yes I know, can't trust everything in Wiki) states that "Insulinomas are rare neuroendocrine tumours with an incidence estimated at 1 to 4 new cases per million persons per year.".

So they ignore MODY on the basis it is apparently 1-in-a-million and look for something else that potentially has the same incident rate!

Hopefully you will get an answer soon!

 

[lizabetic]

Interestingly enough Wiki (yes I know, can't trust everything in Wiki) states that "Insulinomas are rare neuroendocrine tumours with an incidence estimated at 1 to 4 new cases per million persons per year.".

So they ignore MODY on the basis it is apparently 1-in-a-million and look for something else that potentially has the same incident rate!

Hopefully you will get an answer soon!

haha! thankyou for that 🙂
Nicely quoted

 

[sofaraway]

Sorry to hear the appointment wasn't completley positive.

Actually MODY affect 1-2% of people with diabetes, so 1-2 per 100 rather than 1 per million!

Not everyone with type 1(LADA), slow onset has positive antibodies, around 80% only, so potentially you are in the group that don't have them.

I hope that the scan is ok and the dietician visit is helpful in giving you some ideas to help control your blood sugars.

 

[Mark T]

I've been trying to resist commenting (and thus failing) that this is 3 Essex people in a thread 😉

We ought to share notes some time. I suspect sofaraway has the same (very nice) DSN as me anyway (seeing as she is the Essex genetic nurse).

 

[Robster65]

Hi Lizdiz.

Could you ask the consultant to explain to you in full what he thinks is happening and why, so that you can then ask him why he dismisses MODY or anything similar.

It does sound remarkably similar to Lucy's problems. The hypos caused by over-production of insulin due to extreme insulin resistance and then a lag before the levels drop after the glucose has been metabolised. Leaving you with little BG and a large amount of insulin still circulating.

The metformin supposedly lowers the resitance, which means the pancreas doesn't need to produce so much insulin and your levels don't fluctuate so wildly.

It may be that he has this in mind and just wants to eliminate other possibilities, but he shouldn't object to being questioned about his ideas, unless he's pompous or insecure !🙄

Rob

 

[lizabetic]

Well what I thought about the LADA/Slow onset thing is the fact that I was 16 when first diagnosed during a period of high blood sugars where I didn't have ketones.
I came off of insulin after 6 months and continued til now, i'm 19.

I have always had hypos hence why I came off of insulin, they have gotten worse over the last 6 months but purely because of changing to an environment where i'm much more active.

Also I have a stable HbA1C which hasn't increased at all. My blood sugar levels haven't increased fasting wise... only slightly after food.

I can't find any cases of early onset at young ages, if anyone knows of any please point me in the direction!

 

[lucy123]

Hi Liz, I hope you get this sorted.
Sorry for not understanding here, but why would you have been put on insulin if you were already having hypo's without it? I understood it is the insulin that causes the hypo's not the fact they thought you were type 1?

It took me 4 months to convince the medical profession that i was definitely having hypo's as I was constantly told I couldn't be. Only when my GP actually saw one and tested me at 3.6 one morning when I felt completely okay - that I was believed and sent for tests.

I think you really need to keep pushing. Incidentally do you notice the hypo's happen at any particular time - eg not long after eating? After or during exercise?

 

[lizabetic]

Hi Liz, I hope you get this sorted.
Sorry for not understanding here, but why would you have been put on insulin if you were already having hypo's without it? I understood it is the insulin that causes the hypo's not the fact they thought you were type 1?

It took me 4 months to convince the medical profession that i was definitely having hypo's as I was constantly told I couldn't be. Only when my GP actually saw one and tested me at 3.6 one morning when I felt completely okay - that I was believed and sent for tests.

I think you really need to keep pushing. Incidentally do you notice the hypo's happen at any particular time - eg not long after eating? After or during exercise?

I get hypos after not eating for a while and after exercise or following an unusually busy day.

I've actually been prone to 'the shakes' since I was young when I hadn't eaten for a while; I do wonder if its coeliac related. Obviously now speaking in Hypo terms, they are more severe with burning up/sweating/wobbly legs.

I was put on insulin for 6 months after diagnosis when I was thought to be a Type 1, still it was very minimal amounts. Generally then my blood sugar was higher than it is now so it was neccesary until dropped.

🙂 Hope that answers your question lucy.