There seem to be a number of different types of Lipotrophic Disease and following diabetes and on reading about this I see how many different quite common metabolic situations might lead to lack of diagnoses. From the American National Institute of Health, here is a summary article.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4947059/
Which type do you have and how were you misdiagnosed as type 1 to begin with? For example, a lot of people are diagnosed type 1 as opposed to type 2 from specific blood tests. Were you not given these tests?
What about your new diagnosis and treatments has changed your regimes and lifestyle?
I'm thinking that more folks ought know about this, that it might not be as rare as some people think, and that there ought be at least summary articles here on the diabetes.co.uk forum. I hope you can share your story. On the rareness issue, when I was first diagnosed with Fuch's Endothelial Dystrophy in 2012, it was rare. Now, because of the internet and awareness through the Corneal Dystrophy Foundation (a totally patient run organization), a lot of people have been found to have it and it is no longer considered rare. Looking at the symptoms and scenarios in the article above, I am thinking that your kind of diabetes might also be discovered as no longer rare.
Hi Contralto
I have partial lipodystrophy and the exact gene variant is still being researched as I present with known symptoms from two types that are known to the research team today.
As for sharing my own story , I will try to keep this as short as possible, I experienced problems with glare from headlights when driving at night. It became such an issue for safety that I went for an eyesight test where they found cataracts in both eyes ? The optician referred me to my doctors who after blood tests revealed Hypothyroidism and possible diabetes. So I was sent to the hospital diabetic clinic and was initially diagnosed as having type 1 diabetes by a consultant by the use of the GGT test and the usual known symptoms, thirst, tiredness, excessive urination,etc and on physical appearance ie: extremely lean. I was started on Novorapid and Lantus from day one and had both cataracts removed at the age of 33 around the same time of the initial diagnosis.
The years roll on and I continue to be treated as a Type 1 diabetic. Slowly but surely my insulin requirements creep up. Through the advice of the hospital team I adjust basal rates attend a carb counting course and just keep going. Some years later and i am now on 8 - 10 daily injections taking in about 50 units of basal and about 100 units of bolus to cover food, etc. I always injected in my abdominal area because it was so painful to use my thighs or buttocks mainly because I was so lean. I had to switch from using traditional insulin pens to a syringe and vial as the pain involved in administering the high insulin doses was too much to bear with a spring loaded device. At least with a syringe I could control the pressure applied.
I soon developed hypertrophy on my abdominal area due to the repeated use of bad injection sites. I was then advised that my absorption of insulin was the problem and I was asked to try an insulin pump, however my local hospital at that time did not have agreed funding for such devices. Therefore due to the proximity of where i live I was able to transfer to the next hospital trust where pumps were being used.
So i apparently met all the criteria after being reviewed by two consultants and was started on the Accu-chek Insulin pump using Novorapid. So on I go again as normal. A number of years later I start to fell pretty un-well to a point where i am back for more blood tests where a Pituitary adenoma is found and following the relevant tests, started taking Cabergoline to manage this.
However I still had problems with morning blood sugars being high and generally lethargic and tired. I was told its the dawn phenomena and then started the procession of basal testing to achieve a good pattern that worked to compensate for this. I battled with this for months on end to the fact i just expected this to be the norm and to shut up moaning and just get on with it.
Following a low point in my life I sank into depression mixed with painkillers and alcohol to blot out day to day life issues. I tried to keep this a secret from everybody close to me and this really wasn't the best thing to do. One particularly bad day I disconnected my insulin pump and threw everything to do with diabetes in the bin. I could not take anymore. This constant 356/24hr problem would never go away and I felt so ill i just wanted to runaway from everything.
Well this turned out to be the best thing i ever did, because I didn't have any insulin for three to four days and on awaking from this drink and prescription painkiller frenzy I was shocked to find myself still here.
After a kick up the backside from friends, family and HCP's I once again embraced my diabetes but this time i knew something wasn't quite right. I must be producing insulin ?
So I began my own test with reducing my insulin requirements and over the months try to convince my hospital team that i wasn't a type 1 diabetic. However supportive they all were I was told it's just a honeymoon period and this can happen sometimes as we are all different. No way after like 12 years you must be joking i thought !
Roll the story on again and I attend in the summer on a very hot day a routine diabetes appointment wearing a t-shirt and shorts where my consultant noticed how slim my legs and arms were. She asked to examine me further by which time after several visits outside the room to consulate with other members of her team she said I think you are presenting with Lipodystrophy.
I had never heard of this and she explained further she would be sending me to Addenbrookes hospital in Cambridge for further tests at the National Severe Insulin resistance clinic.
So i finally attend the clinic where following lots of blood tests and research people probing and prodding me they confirmed that i was not a Type 1 diabetic or Type 2 but infact i had the severe insulin resistance syndrome of Lipoatrophic diabetes.
This has been a complete shock to the system. But as of today I am managing this well. I still take about 40 units of Fiasp insulin for basal through a medtronic pump and administer the relevant bolus for food accordingly. I take 10mg of jardiance and was put on a extreme low fat, medium carb (80-125g) and high protein diet as there is no cure for Lipodystrophy at present. My pancreas produces the normal range of insulin following the C-peptide tests and I have no anti-bodies from GAD testing either. My daily blood sugar remains in the 5-6 range and i am just waiting for the results of my latest Hbac1 soon.
I currently cannot exercise much as i have muscle dystrophy in my right leg from the Lipodystrophy and have had ulceration of my left foot due to the weight bearing problem of having zero amount of fat on the soles of my feet.
I have to use a wheel chair currently but i am hoping to eventually get back to being active once again where i can cycle, run and walk more freely as i did prior to all of this.
Its not all still plain sailing and i still have to work at managing my conditions as we all do, but I think I am now finally travelling on the right track to get me home ward bound so to speak.
Sorry for the long story but if this helps anyone on the forum and raises some awareness especially about the importance of C-peptide and GAD testing at early diagnosis then so be it. Any questions please ask....no probs at all
All the best
Si