Hello, I'm new and thought I'd introduce myself (sorry it's so long)!!


I thought I'd introduce myself!

Firstly, I have insulin resistance, not diabetes, but this is the most relavent community I could find, so hope you don't mind me being here!

I'm 17 and was diagnosed with a rare genetic form of insulin resistance (which sort of mimics type 2), poly cystic ovaries and some other symptoms that come with it (unwanted hair, a skin condition called acanthosis nigricans and swollen sweat glands/cyst type things in the same areas as the skin condition). I have never had a period (and have been told by friends that I'm lucky!), although of course wish that I do have them, as they show that your body is working normally.

As for medication, I used to take metformin 2x500mg twice a day. I say that, but I only really took it for a year when I was 12. I built up a bit of a phobia about taking it, despite having no side effects, and lied to doctors and family about taking it up until recently. When my mum first found out I wasn't taking it, she made sure I did and watched me, although it was awful... I'd sometimes spend up to 2 hours taking them. I'd physically gag (and once threw up) and do anything in my power to avoid taking it. I'd then proceed to get flashbacks throughout the day, visualising having to take them, which again made me gag and feel physically sick (not ideal when you're in college trying to concentrate). I tried swapping to the liquid form, but this made absolutely no difference. I started seeing a counselor, as it was a mental issue, I'm absolutely fine with taking any other medication. And then at christmas when I saw the specialist, she said that if it was this bad, and there was no real proof that it was helping my condition and not-taking it or the past 5 years hasn't had any affect either, then I could stop taking it. That made me soooooo happy and was the best christmas present I could ever wish for. I no longer had to struggle being made to take it or with the guilt of not taking it!

For dealing with my hormone levels (extra male hormone, as I'm sure lots of you have!), I was originally (when I was 14) prescribed Dianette by my GP, which didn't have any effect on the hair side of things, but I felt like my skin looked better and my sex-drive decreased (which seemed to be quite big, more skin to a 16 year old boy than the rest of my girl friends). However, with input from my mum and her intense googling of the side affects after reading an article (young girls dying from thrombosis as a result of the drug) , I stopped taking this after about a year. Last year I was prescribed flutamide by my specialist (usually given to men with prostate cancer). It's not had any dramatic affects yet, although I will admit that with all the metformin issues that I had, I haven't taken it religiously. My dose is being increased (what seems to be roughly every six months, I've only had one increase so far) until I start my periods I think.

So I guess we just wait and see what happens in the future. I would like to have children and have been assured by doctors that it's very likely that I will be able to, with the different treatments available. We're very lucky to live in an age where so much is available to us!

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9 Replies

  • Welcome to the group, Daydreamer99. Please feel free to continue posting postings and/or comments of your own and comments on the rest of the other member's postings. Taking the polls on the Polls section on the side of the screen if on a computer; at the bottom if you use a cellphone. Also, feel free to ask questions and meet the rest of the group members.

    When will your next appointment with both the specialist and/or your GP be scheduled? Did either of them say how long the flutamide should be taken (besides the increase every few months)?

  • Hi, my next appointment with the specialist is in July this year (I see her every six months). I've been told that I will take the flutamide long term (forever), until I want to have children.

  • Please let us know what the Specialist says at the next appointment in July.

  • Daydreamer99

    Please post your reports. Your height weight eating habits etc

  • Hi, I'm about 5ft 2" and my weight is 60kg. I always make sure to have a good breakfast to sustain me through the morning, typically bran flakes or weetabix. I have a cooked lunch (provided by school) and will have a lighter tea. I don't tend to snack aside from a cereal bar mid-morning to prevent me having a hypo. I control my hypos with my diet, so it is important that I always have something that I know will sustain me and therefore naturally avoid the less healthy options (e.g coco pops, white bread, fast food).

  • Hi, My body does produce insulin - I don't and have never injected. My insulin resistance means that my insulin receptors aren't very sensitive to insulin - I have a mutated insulin receptor gene. This is unusual, as insulin resistance is usually caused by lack of exercise and being overweight, both of which don't apply to me. What makes it even more unique is that the mutation is not inherited from either of my parents, it started spontaneously in me. I am currently being used for research at Addenbrooks Hospital (Cambridge University's hospital). It mimics type 2, because I get both low and high blood sugar (if I don't control it). I am not sure either why I get hypos, as it goes against the level of knowledge I have. A doctor once queried this, saying that it shouldn't be possible for me to have low blood sugar and checked with the specialists, then came back and apologised saying that she understands now why I get them. I did wonder about stem cell therapy, and will probably bring it up when I next see my specialist in July.

  • Daydreamer99

    You say surely about your gene mutation means you got it tested with a genetic laboratory.

    "This is unusual, as insulin resistance is usually caused by lack of exercise and being overweight, both of which don't apply to me."

    There are many people who do exercise and are not obese, but they are still diabetic. Yes, we all do have genetic basis of diabetes.

    I don't think stem cell therapy will work on you. I'm sorry for my suggesting that as advice. But still you can take opinion about stem cell therapy.

    So ultimately you are like others here. You have to find out what cause hypos. But now you have to be more disciplined about your diet. Please try and see what happens.

  • Hello. I have been T1 for more than 50yrs & still full time employed, In your intro it does not say how much work or exercise you do ? I know if I sat still for a long time my bg would go up. The summer is here & I have been to work this morning in the fresh air,

  • Hi, I'd say I do a healthy amount of exercise. I cycle 15 minutes to and from school each day, sail once/twice a week and will take my dog for long walks most days. I live on a beautiful island and consequently (when not at school) spend more time outside than inside!

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