Anybody here diagnosed later in life?


(Katrinas) #1

Hi there,

I’m a 46 year old woman who was just diagnosed in January with LADA. Latent Autoimmune Diabetes in Adults (Type 1). I’m looking to connect with others that were perhaps diagnosed later in life to share stories and concerns/questions.

Thanks!

Katrina


(ScottT) #2

#katrina

Although I am not a latent type one diabetic if you have any questions I’m sure many people will be happy to assist you.

Scott


(Katrinas) #3

Hi Scott,

So… prior to diagnosis I was VERY active. Hot yoga and weight training. I started to become very sick in October of last year and was finally diagnosed in January. Well… in January I was diagnosed incorrectly with Type 2 and diagnosed with type 1 in March. I was taking oral meds from jan - March and wasn’t seeing a whole lot of improvement. Since starting insulin I’m definitely seeing improvement. My question/concerns are this: As I stated I was incredibly active prior to diagnosis, and had to stop working out so vigorously because, well, frankly I actually just COULDN’T… I had no energy and had lost a significant amount of weight when I didn’t have any to lose. I’m slowly getting back into my routine but find that I can NOT push myself like I used to and I tire easily. I slept 12 hours on Saturday night. I’m worried that I may not ever get back to the levels of training I was at before and wonder if others experienced the same thing and what they did to perhaps work within the illness but still achieve their fitness goals etc. Like I said, I am incredibly tired and while I have bursts of energy that last longer than before I still am no where at where I was before I ever got sick. Thanks for any guidance and advice any of you can provide!!


(ScottT) #4

#katrina

I would say that you have gone through A LOT in the last several months. I stay very active and I do not get tired unless my BG is too high. It’s finding the balance and that may take a while.

I hope your doc checked your thyroid and adrenal glands…

If you are still losing weight are you checking ketones? High Ketones make you lose weight and can make you tired. What is your A1c?

Type 1.5 diabetes is not my expertise, but you have to know consider yourself T! and check your BG often - maybe to correlate your tiredness to you BG.

I think you will regain your full strength back once you get adjusted.

I am sure many others will reach out to you!

Scott


(Katrinas) #5

This is very helpful. I have actually gained most of my weight back and I know she checked my thyroid but not sure about Adrenal Glands. Thyroid was within normal range. I just had my A1C rechecked, it was 11.7 in January! It is now 6.6 as of last Friday! Significant improvement. :slight_smile:

I think I will go ahead and get my thyroid and adrenal glands checked again. I just want to be sure.

I know I still experience highs, and now add into the mix the lows because of the insulin. I think it makes me incredibly tired.

Thank you so much.

Katrina


(system) #6

Hi Katrina, I was diagnosed with LADA Feb. 25, 2014 so I can identify some with you. I too have been so tired. I was very sick before with several other autoimmune diseases which they had been searching for a cause for years. I became even sicker and blood sugar suddenly when up to 540 with A1c 16.4 and ended up in hospital.
I have been on insulin from the beginning but they have not been able to get it stable even after I went on the pump. They think my pancreas is working overtime which is what I guess it does before it finally dies.
I felt really good for about a month but the last 2 weeks have been more tired but more pain from my fibromylgia.
My highs and lows happen very rapidly so I am going to get the continous glucose monitor to help me know when it is coming down too fast.
I took a really good class thru our hospital and learned a lot. I recently also got the Omnipod pump and that makes it a lot easier than all the shots.
Do keep in touch and let me know how you are doing. Am open to others suggestions too.


(ScottT) #7

6.6 is great ! Out of curiosity, are you taking Lantus and then taking a bolus before each meal? What kind of rapid acting insulin are you using?

I use a pump and a continuous glucose monitoring system through Medtronic. It’s not for everybody.

Maybe I am a little bit more on the less optimistic side at times, the wind strange things like this happen to people you have to think that more might be going on so I definitely would have an ultrasound of your kidneys your Gino gland and run around renal function panel .

I know you’ll do fine and if you need any help I’m sure like I said other people will be there to support you in type one nation.

There is another site you might want to visit if you haven’t already it’s called GLU.org


(Katrinas) #8

I’m taking Lantus at night and then Humalog at meal times. I’m actually on a very low dose right now but I anticipate that as the disease progresses that things will change. I am definitely ceasing to produce insulin on my own at a rapid rate.

I am in full agreement with you that I wonder what else might be going on. I know I had a kidney function test and it was well within normal. I am going to get tested for celiac and addison’s as well.

I will check out glu.org for sure! Thanks!


(ScottT) #9

I feel sad that you have have to deal with this at sush a late age. It sucks to begin with … Good luck and please know that many thoughts are with you!

Scott


(Grannyto6) #10

Hi. I just joined - I too was diagnosed later in life - at age 46. They thought I was type 2, but nothing worked until I started insulin - six shots a day. Four with meals and two of long acting. Now I use the Medtronic Enlite system (because I don’t feel the lows - all of a sudden I’m in the 40s) and I’m doing great. My A1C is 6.3. I’ve been at it for 18 years now and I just keep going. I saw this post and I just wanted to add my two cents. Thanks for the platform.


(aiki99) #11

Hi Katrinas

Diagnosed at 49 about 18 months ago. Daughter of a 18 year old Type 1 who was diagnosed 7 years ago. When she was diagnosed, I was tested and had GAD65 antibodies, but no diabetes symptoms at the time. There are some LADA groups on Facebook if you want to chat and learn more. I recommend this one:
https://www.facebook.com/#!/groups/ladanz/
I live in Australia, but the Facebook group is a global one.

Not using a pump. HbA1c is 6.4% at last endo visit. I am running 50km (30miles) per week and experimenting with insulin and carbs has been a pain, but seem to be on to a regime that works for me now. Doing a triathlon series next summer. Switched to an almost Paleo diet (high protein, low carb) which has helped a lot. Still doing pens. Levemir morning and night, Novorapid and carb counting at meals.

My thyroid hormones are a bit suspect and my iron levels are a bit high. Things for me to watch.

Good luck with the journey. My own experience has taught me a few lessons:

  1. Read - you will end up knowing more about your diabetes than your endo. Gary Schneider’s book “Think like a pancreas” is a must-read for you, particular as he is an exercise physiologist with Type 1.
  2. Experiment - don’t be afraid to adjust your insulin doses and see what happens (but test often when you do), particular if you exercise a lot. Become friends with gels, energy drinks that the cyclists use. Great for quickly topping up blood glucose during long exercise periods.
  3. Don’t be afraid of carbs and combating with insulin. I see so many T1s struggle with an ultra-low carb diet to keep their insulin use very low. They sound soooo miserable. Life is too short not to have chocolate and cheesecake once in a while.
  4. Educate your friends and family. You WILL have a low one day that will require assistance from others. Make sure they know you are diabetic and to intervene at the first sign you start behaving strangely.
  5. Be careful around alcohol. I used to drink a fair bit, but feel very ill if I drink too much anymore. It also plays havoc with your blood glucose control.

(jlptd1) #12

Hi,

I’m 26 and was diagnosed sept 2013. I am finding it very difficult to understand and get my head around things. At first I didn’t think it was that serious and was in denial but now I realise it is. My immune system is shot to bits now. I never used to get ill, now I’m always ill.
I’ve just got the hang of carb counting but it’s a daily battle with me and food. Any tips on what to eat etc?

Thanks :slight_smile:


(vhm1) #13

I was diagnosed T1 in May at age 46. Lab did a complete workup and doctor (GP) recognized immediately I had ‘zero’ insulin, as he put it. Immediately went on insulin, which has already been adjusted a couple of times. I have an Endo now, educator and saw the nutritionist for the first time today. Hope to get energy back and be able to exercise consistently, maybe even run again, soon.


(4her4life) #14

Hi everyone!
My beautiful fiancé was just diagnosed TODAY with type 1 diabetes. She is very healthy and very active, but lately she has been losing weight rapidly and never has energy. She had to quit her crossfit classes because she couldn’t find the energy to go. She finally went to get her blood checked and found out today that she has type 1 diabetes. She called me crying while I was at work. I feel absolutely horrible that this is happening to her and not me. I’m hoping to get some advise and support from this group so I can be strong for her and support her through this tough time. We love to travel and we are very active, but now she thinks we can never do any of the things we used to. We still have a lot to learn and still have some tests she has to do. I’m am greatful I found this group with people who share our situation.


(ScottT) #15

@4her4life

Chase,

Sorry to hear about your fiance, but it sounds normal to me that a lack of energy and weight loss are normal since they are the main symptoms of T1 - she may have had it for a couple of weeks … good thing she went to her doctor. Normally they do a Glucose intolerence test, but if her BG was really high that would pretty well make sense.

Support: Let her get used to it – be there for her carry some sugar with you.

I travel ALL the time - weekly … you just need to be prepared!

Ask anything …

T1 42 years!

Scott


(Murphy) #16

I am in my early 50s and was just diagnosed with LADA in February 2014. My GP has been no help. In fact, my GP did not even contact me when my antibody testing results came back. I had to contact my GP and ask about results and then I had to push her to take me off of the Type 2 oral medications and get started on insulin as a Type 1. The endocrinologist wasn’t much better. Basically feel like I was given insulin and sent on my way. There has been no patient education (DSME) or ongoing support. I have spent a lot of time trying to learn as much as I can. I would appreciate hearing from others what resources they have found most helpful in learning to self-manage T1.
I already have Dr. Bernstein’s Diabetes Solutions, Jenny Ruhl’s Blood Sugar 101, and Gary Scheiner’s Think Like a Pancreas. Would be interested in knowing what other books, websites, patient education classes, etc. might help me get a handle on this.


(Grannyto6) #17

Sometimes I don’t realize how lucky I was. My GP did not do much for me when we realized that I could not go without insulin. My endo on the other hand is the greatest. I see him or his PA every 4 months. He is always on the cutting edge technology wise and encourages me in everything I try to do. That is probably why I can roll with it not only diabetes wise, but most everything else this life throws at me.

I would suggest that you try to find some sort of support group and go. I usually drag my husband to meetings. It doesn’t hurt him to learn about this as well. I think we can learn from each other because someone has always “been” where we are and it helps to know this.

Just hang in there.


(blairhart2) #18

Hi everyone! My husband was diagnosed last week at the age of 33. He seems to be doing ok with news, but I am having a very hard time with it. I’m just so sad and angry that this is happening and I’m worried that I will obsess over this every day for the rest of our lives. We also have a 3 month old son and I’m worried that he will get this disease as well. I’m scared that our lives will never be the same again. Please tell me this gets easier:-(


(ScottT) #19

@blairhart2

Congratulations on having a healthy son!

All things do get better in time. I am sure this is a shock for both you and your husband. It might be the case that he is simply not realizing the effect it will have on his life and maybe that makes it look like he’s dealing with this well.

He may not realize how much work taking care of himself and his family will be - having T1 is a full time job in itself.

If you are there to support him, the transition will be easier for both of you.

I would not be worried about your son having or getting T1. Take one step at a time!

It will get better!

Scott T1 42 years…


(christinemcmac) #20

Hi there! My name is Christine and I was diagnosed with t1d Sept 2013. It was really quite shocking. I am a petite now 54 year old active healthy woman. I was not feeling well and continued not feeling well for approx. 2 weeks…headache every day, fatigued, losing weight (although at the time I thought awesome as every woman would, although was slim 115 lbs anyway). I thought is it the flu, menopause, what? I just felt like I was falling apart. Finally forced by my partner to go see a dr. After a couple of bloodtests and getting worse I ended up in hospital with ketoacidocis…bs was 38 by that point ( I never want to feel like that again, it helps me to be very good about my sugars though). I too have found it difficult to get back into my workout routine…a mix of less energy, afraid of lows and just feeling overwhelmed really about my “new” life. Coming up now on my 1 year anniversary and tons of knowledge I am feeling more like getting back my life as it was or at least closer to what it was.
I continue to struggle with really ALL of this but I work very hard at it ( my new hobby and thank goodness I am good at math: 1.5 units per 15 grams x 2 pieces of pizza divided by 2 hours premeal plus 1 hour post meal blah blah blah…you get it) and tomorrow it is all changed. I appreciate all the pointers all of you list here. Thank you. I will continue to check back and try to share some of my insights also.