When I was first diagnosed in October 2014, I experienced a lot of hair loss. Every time I brushed, or even touched my hair huge pieces would fall out. This made my diagnoses even harder for me. I’ve always had thick hair, and now it’s definitely thinner. My endo said this was just my body reacting to the trauma that is was going through. The hair has slowly been growing back so now I have a funny looking layer of hair sticking up (no complaints I’m just glad it came back!) Has anyone else experienced this or am I the only one?
I can’t confirm that hair loss is necessarily a result of T1D. I have a full head of hair, which the barber regularly thins, and I’ve been living well with T1D since 40 years before you were born.
Hair loss often has to do with genetics / heredity. For instance I have more and thicker hair on my head than my non-T1D wife and our son; my wife’s father, brother and other of her male relatives didn’t have much hair.
I’m not sure this helps, but I also used to have VERY thick hair. I’m not sure if it was from the misdiagnosis of type 2 and weight loss or from going into DKA and being diagnosed as type 1, I have about 1/3 the hair I used to have, so far no explanation from any doctors.
Check into the possibility of hair loss due to alopecia. This turned out to be the cause of my hair loss. Colombia University has been doing genetic research on the correlation between autoimmune diseases. Type 1 and alopecia are two that they are looking into.
How is your thyroid? Autoimmune diseases tend to run amuck, maybe it’s that??
I lost a bunch of my hair when I was diagnosed (660, and symptoms for about three months) and then I grew it all back. Same consistency and color as before. It’s very normal - your body was using the hair-producing protein as fuel, so it didn’t make any hair. Once you’re back on track with your bg, your hair will start to grow in again as tiny baby hairs. Enjoy it - new hair styles galore!
Were you treated for Type-2 before being diagnosed with Type-1? If so, maybe it could be related to a medication for Type-2 treatment. I was first treated with oral meds which were later found to cause liver problems. Luckily I was very quickly moved to Insulin.
I was diagnosed in November of 2014 and had the same exact thing happen. I have long, thick hair and I lost about a third of it. In February I started noticing new hair growth. Other type 1s who were diagnosed as kids and even my doctor assured me it was not a side effect of taking insulin (which it is not) but I do believe that my hair loss was a result of starting a new medication and major changes to my body. Stress can cause hair loss too, and being diagnosed was definitely stressful!!! Even my hairdresser told me that she sees it all the time…for a lot of people who start major medical treatments, they lose a lot of hair until their bodies adjust.
I’m not a doctor, but I wonder if the hair loss was part of your body just adjusting. Glad to hear it is growing back!
Yes! I had this happen too. I also was diagnosed in October 2014 and then had nearly half my hair fall out over the subsequent months. Like you mine is growing back now, maybe 3-4 inches so far :).
I did some intense research into why it was happening and I found two explanations:
The first is that for the months leading up to our diagnosis the body is dealing with some really high blood sugars so it begins to hoard all the nutrients it can, that means not going through regular hair growing and shedding schedules. Then when diagnosed and getting insulin again the body can start it’s regular maintenance routine but because it has basically been on pause it over-compensates and voila, half our hair gone.
The second explanation is that our bodies went through something incredibly traumatic… I mean, we could have died and very well would have if left undiagnosed. That kind of trauma is a huge shock to our system and as a result the body does a reset. As a part of this reset all the hair we would have lost slowly overtime gets dumped all at once. It happens to some pregnant women after giving birth and to some people after major surgeries as well.
I think both explanations apply to the hair loss we experienced. The good part is what you already know, it grows back 
Hope your first year is going okay!
I was diagnosed in May of last year, and by August I had lost half of my hair. When I went to dermatologist she told me it was due to the shock my body went through. I went to see her last week and she told me my hair is back to normal. So yes, it does have to do with Type 1.
I was diagnose about 5 years ago with Type 1. I was taking a shower one day and globs of hair was just coming out of my head. I just cried and cried and when I called the doc, she said it was caused by malnutrition which is basically what is happening before you are put on insulin. She said not to worry. That my hair would all come back. AND IT DID. So hang in there. There are tons of little things that happen when you are a diabetic that you will slowly learn to handle. The more you know, the easier it is to control the disease.
this didnt happen to me, but high stress situations can cause your hair to fall out. So would malnutrition. it will come back. I do suggest taking your vitamins as a diabetic. I take a Multi, a blood builder (B12, iron, folate, Vit C) Vitamin D. I also take probiotics as diabetes can mess up your healthy bacteria. Biotin is good for hair and nails…
Wow so many lovely responses :D! Thank you all and i’m glad I wasn’t the only one. I did have my thyroid tested and all is well there. But like Michelle said, it is growing back! Probably about four inches. It always sticks straight up in the humid AL weather. Thanks again for the input
Ask your DR to chuck you for thyroid and Celiac. Those are both autoimmune diseases that often but not always comes with T1D… You should chuck it always with your yearly blood evaluation…
This sounds lots like thyroid…
I also lost about 1/3 if my hair volume at the time I was diagnosed in 2014. My question is; how long does it take your hair to grow back. Just started pump therapy 4 months ago, but A1c still over 8. Any thoughts?
To BCgirl-
I was just diagnosed in Jan 2015, and lost a lot of my hair in the couple months after that (like, had to clean out the shower drain, bathroom floor, and hairbrush almost every day. It was epic). My hair has already started to grow back-I have all these short chunks that like to stick up everywhere. But I’m just glad it’s growing back
(A1C=14.3 at diagnosis, since then A1Cs have been 5.9 and 6.3, if that helps).
Yes BCgirl, It began to grow back a few months after I was diagnosed. The last f the fallout ended in December (diagnosed in October) and it was healthy again in February I would say.
I have to put this in. Check into Niacinamide and Vandium as a cure for type 1 if caught early enough. Also look into diary products.
Gotta fight this desease with everything we have. I wish we had more support nutritionally!
I have been a type 1 diabetic for 31 years.
The internet is power. Do your own research!!!
Good Luck!