Mauriac Syndrome

[ashleyk2552]

Just curious if anyone has heard of this..? Apparently I have this but it's never been mentioned to me in person, first I heard of it was on a letter I got through the post...

 

[sally and james]

Well, I've just googled it and come up with the following. I guess it will be fairly obvious to you if you do have it.

"Mauriac syndrome is characterized by dwarfism, obesity and hepatomegaly in patients with insulin-dependent diabetes mellitus. It is associated with poor control of type 1 diabetes mellitus (T1DM) in adolescents, and may present as obesity, hepatomegaly, cushingoid facies and elevated transaminases.[1] It is typically associated with growth failure and delayed pubertal maturation, which should alert the physician over insufficient management of diabetes mellitus and the related development of Mauriac syndrome, although these can be reversed with good glycemic control.[2]"
It came from this link, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3743389/

If it does sound like you (and it is said to be rare), note the last bit about reversal with good glycemic control.
Very best wishes,
Sally

 

[Freema]

Just curious if anyone has heard of this..? Apparently I have this but it's never been mentioned to me in person, first I heard of it was on a letter I got through the post...

can that be true..
what do you think yourself of that diagnosis ?

 

[ashleyk2552]

I've googled that too, I'm not overweight or have dwarfism, I have had problems with my liver, heart, urine tests, and had lactate levels that were really high but no signs of a reason why they were so high, my bloods had been up and down before all of this but not told my bloods were extremely bad..

Just wondering anyone had heard of it or suffers from it..?

 

[himtoo]

Hey @ashleyk2552
I had a quick read of your profile and first thing is .... a big hug !!
you are so not alone
what a brave young lady that you are -- 18 years is a long time at your age.

have you responded to the letter in the post at all yet ?
it sounds as though somebody is just looking at numbers on a page and making a diagnosis without seeing the person.

main question from me though ---- are you trying to test and control bloods to your best ability ??
can we do anything to help you at all ??

all the best
himtoo ( Paul )

 

[Freema]

I've googled that too, I'm not overweight or have dwarfism, I have had problems with my liver, heart, urine tests, and had lactate levels that were really high but no signs of a reason why they were so high, my bloods had been up and down before all of this but not told my bloods were extremely bad..

Just wondering anyone had heard of it or suffers from it..?

well no ,but maybe you should change GP , as he clearly don´t know what is your diagnosis... one look at you and most can see just from your face Photo that you do not likely have dwarfism.. ....but i didn´t dare write it right away as I might be wrong..

I think in your case it is a specialists that should see you , but maybe it is already ?

 

[ashleyk2552]

This letter was actually from a gastroenterologist that tried to discharge me every day for week when I was in hospital July time.

I then got a gastro emptying study done which showed nerve damage to my stomach. I knew about this but the other thing I had no idea.. he then discharged me from his clinic so I ask for the results to be sent over to my private doctor who I'm going to talk with this Saturday coming... but I then have a diabetic review to go over my ecg, blood results, urine results. Everything is going back to him..

I am trying so hard but it seem that my body is resisting the insulin to an extent but then my bloods will suddenly drop then shoot up.. i can't get them level.

Thinking about going back on insulin pump but very nervous as I got bullied severely last time I had one and also thinking about forking out £150 for the new blood testing machine which attaches itself to the back of my arm and I just scan to see what the he'll is going on..

I'm 21 now, I'm having health problems that I should t get untill im older, I feel I'm not able to do things people my age do..

Sounds silly! I feel silly saying all of this. But yeah, my GP and most of the doctors I've seen have passed about around and are rubbish, I mean my stomach issues had been going on for 4years... getting worse and worse and apparently it's a common thing for 'diabetics' to get...

 

[Freema]

This letter was actually from a gastroenterologist that tried to discharge me every day for week when I was in hospital July time.

I then got a gastro emptying study done which showed nerve damage to my stomach. I knew about this but the other thing I had no idea.. he then discharged me from his clinic so I ask for the results to be sent over to my private doctor who I'm going to talk with this Saturday coming... but I then have a diabetic review to go over my ecg, blood results, urine results. Everything is going back to him..

I am trying so hard but it seem that my body is resisting the insulin to an extent but then my bloods will suddenly drop then shoot up.. i can't get them level.

Thinking about going back on insulin pump but very nervous as I got bullied severely last time I had one and also thinking about forking out £150 for the new blood testing machine which attaches itself to the back of my arm and I just scan to see what the he'll is going on..

I'm 21 now, I'm having health problems that I should t get untill im older, I feel I'm not able to do things people my age do..

Sounds silly! I feel silly saying all of this. But yeah, my GP and most of the doctors I've seen have passed about around and are rubbish, I mean my stomach issues had been going on for 4years... getting worse and worse and apparently it's a common thing for 'diabetics' to get...

you are not silly, I think you really have a lot to fight with, I also think you shouldn´t have to use all that money yourself, as i guess that you don´t have that much money in your age being cronically ill, how about your parents do you have any emotionally and economically support from them.. I am so sad you have to fight with so much so Young as you are..send you my love, but the idea of that new blood testing maschine seems to be good idea.

I don´t understand people can be so evil and bully anyone for having a pump ...I already hate them..

 

[himtoo]

hey there hun -- believe it or not -- even other diabetics( who don't suffer the symptoms ) will get this -- and I totally do--
been at this game for over 44 years and very often we have to wage a battle with our doctors to get diagnosis , treatment , empathy -- you name it

who was bullying you on a pump last time ?? -- ( better not have been your care team -- Grrrrrrrrrrrrrrrr )

please please don't ever feel silly on here -- we ALL get where you are coming from and we all get how much courage it takes to post --- just know you have a D family here to try and help ........ x

 

[ashleyk2552]

I do have money, as I save.. part of a thing all these problems I don't go out much so any money I get I put away, also make money from my photography (not much) but I've even had to put my studies on pause because of everything. I can do it though! I don't give up fighting.
I have some support off them but I don't like talking about my health to them as they always say it will be my bloods. I have been to counselling and it helps a lot although I do get the odd few days where I'm feeling down.

I just feel my diabetes has now become my top insecurity... I don't like dating because of it, I hide my injections away from people.

Thank you it means a lot for you's to supports my views here and judging or thinking the worst.. ️

 

[ashleyk2552]

hey there hun -- believe it or not -- even other diabetics( who don't suffer the symptoms ) will get this -- and I totally do--
been at this game for over 44 years and very often we have to wage a battle with our doctors to get diagnosis , treatment , empathy -- you name it

who was bullying you on a pump last time ?? -- ( better not have been your care team -- Grrrrrrrrrrrrrrrr )

please please don't ever feel silly on here -- we ALL get where you are coming from and we all get how much courage it takes to post --- just know you have a D family here to try and help ........ x

Hi, thank you. Well I know this sounds harsh but at least I'm not the only one who's had that battle! My parents were getting frustrated with them too, it was taking it toll on my mentally to the point I was having split personalities.

It wasn't the care team, it was people I went to school with, the pupils, the teachers, lifeguards when I went swimming and people pointing when I was out in public and it was in show. I hated it which lead me to stop using it and going into hospital..

Thank you, means a lot tbh. Not many people to talk to about my feelings towards diabetes. X

 

[Freema]

Hi, thank you. Well I know this sounds harsh but at least I'm not the only one who's had that battle! My parents were getting frustrated with them too, it was taking it toll on my mentally to the point I was having split personalities.

It wasn't the care team, it was people I went to school with, the pupils, the teachers, lifeguards when I went swimming and people pointing when I was out in public and it was in show. I hated it which lead me to stop using it and going into hospital..

Thank you, means a lot tbh. Not many people to talk to about my feelings towards diabetes. X

well my guess would also be other Youngs bullying, but I dont understand what they get out of it... but you must be strong for yourself and get what is the best option for you.... I always think of a man I saw on television who had no legs and no arms and was swimming, he just shined of happiness and then i thought ; if he can be happy then can I too...

maybe you have grown older since being bullied the last time, and people on your age have stopped being so mean.. otherwise you should avoid them... and can´t that maschine be taken off ocasionally if you need to be free from staring eyes... you should have been a punk that liked to stand out among all the others, but not everyone likes that..

 

[himtoo]

Hey @ashleyk2552
just going to tag in a few people I would like you to meet .
they are some of my best friends here on this forum and are all wise beyond their years ....
@Snapsy , @catapillar @Jaylee , @azure , @Juicyj , @mahola , @Mrsass , @noblehead

 

[catapillar]

I've not heard of Mauriac syndrome before seeing your post @ashleyk2552 , but it seems that if you don't have severe growth retardation and youre out of your teens, you probably don't have it. It sounds like it was a doctor not paying attention - can you write and ask for clarification on it?

Are your blood sugars in control? Do you test regularly? Only asking cos the syndrome is associated with out of control blood sugar so if you has some of that it might have fed into your "diagnosis". And of course good control is only ever gonna be a good thing for you - in particular for your gastric issues.

 

[ashleyk2552]

Hey @ashleyk2552
just going to tag in a few people I would like you to meet .
they are some of my best friends here on this forum and are all wise beyond their years ....
@Snapsy , @catapillar @Jaylee , @azure , @Juicyj , @mahola , @Mrsass , @noblehead

That's great, thank you!!

 

[ashleyk2552]

You've had diabetes for 18 years?! I've had it for 10 months and I've had enough already! You, my lovely, are an absolute superstar and anyone who says any different can kiss my ample behind! xx

I've actually had it 19yrs now. Now 21!
Thank you, but there worse people then me and live goes on and it needs to be lived. Xx

 

[ashleyk2552]

I've not heard of Mauriac syndrome before seeing your post @ashleyk2552 , but it seems that if you don't have severe growth retardation and youre out of your teens, you probably don't have it. It sounds like it was a doctor not paying attention - can you write and ask for clarification on it?

Are your blood sugars in control? Do you test regularly? Only asking cos the syndrome is associated with out of control blood sugar so if you has some of that it might have fed into your "diagnosis". And of course good control is only ever gonna be a good thing for you - in particular for your gastric issues.

Yeah, I don't. I mean I'm pretty short but not out of the average height for women!
The doctor who send this letter and dealt with me in hospital was not clued up on diabetes.. so I will be talking to my diabetic specialist about this on Dec.

My bloods have been up and down but I've not had ketones but I have had high blood glucose and low blood glucose too. Just feeling like there's no middle. But definitely thinking on insulin pump.

 

[ashleyk2552]

Well I admire you. My 11 year old daughter is type 1 too. She was diagnosed 5 days after me. How unlucky we are! She's doing great at the minute but when she begins to rebel against it, which I fully expect, I shall be directing her to this forum and showing her people like yourself to give her inspiration. You're amazing, never forget that!

Thank you!

Awwh bless her and you! I think I'd would be good that you's both have it to support each other and known how it effects one another.
I don't remember any of my childhood with diabetes but my teenage years were a nightmare. Definitely remember practicing injections into an orange before myself.

Awwh, that sweet, id quite happily talk and support her through them and this forum is amazing!

 

[azure]

Hi @ashleyk2552

Just a very quick welcome from me for now as its late but I wanted to say Hi and send you my best wishes. X

Type 1 is **** sometimes. I've had it 22 years. I've got a pump and I love it! Don't let people bully you. Bullies are insecure and usually much weaker than they let on. You, on the other hand, sound very strong

 

[Snapsy]

Hi @ashleyk2552 !

So sorry you've been having such a hard time - the bullying in particular is very upsetting to hear about, and I've had experience of that, too, especially in the early years of my diabetes (I was 11).

I've had counselling too - I see a very wise therapist, coincidentally with personal experience of my other condition, and it's really helpful - but I have to say that the support (and advice, and giggles) I get right HERE is phenomenal!

I hadn't heard of Mauriac syndrome, but given that not everything listed seems to 'fit' you and your experiences, I would strongly recommend a face-to-face consultation with the person who has given you that diagnosis - I appreciate that appointments can be hard to come by, but you do need to be able to make sense of it all!

My life has changed immeasurably since getting a pump last year and a Freestyle Libre early this year. I have new confidence in my body and my brain that I don't even recognise. I am proud of my new life despite still getting really really cross with myself if things don't go right - but I can now see the horizon beyond that tall wall of diabetes panic that has always been in my way, even if I do still feel rather stuck behind it.

Stay strong - for you ARE strong - do your best to keep testing, and do have a chat with those doctors!

Love Snapsy