Newly Diagnosed LADA with Hashimoto's autoimmune disease

Type 1 and LADA
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Hello everyone,

Today I got my results back from the hospital that I have Type 1 diabetes, but the late onset auto-immune adult version.

A little history:

About 3 years ago I got diagnosed with Hashimoto’s disease in France during my 4th pregnancy (of which 3 ended in miscarriages). They did lots of testing and not only found extremely elevated thyroid antibodies (Anti-TPO) but also glucose levels that were too high. I got diagnosed with gestational diabetes and put on a diet. I never got to see the results as i miscarried soon after.
Fast forward to summer of 2016. Another pregnancy, again too high glucose levels. again gestational diabetes. But they couldn’t quite explain why it set in so early in the pregnancy. So after another miscarriage they decided to admit me to the hospital for a day and run a series of tests.
Of which i got the results today: I tested positive for anti-GAD. Together with consistent high fasting blood sugars (but not high enough to formally be diagnosed with full blown diabetes) and the recurring diabetes early in my pregnancies they gave me the diagnoses of LADA.

There is much information to be found on the internet but i’d really like some feedback from others in similar situations.
I’m a 32 (almost 33) year old female, not overweight, Hashimoto’s disease, Bouveret-Hoffman syndrome and Scheuermann’s disease (back problems).

Has anyone else had a similar diagnoses with similar symptoms? The doctor said i was pre-diabetic before they came with this diagnosis.

Will I be insuline dependent in the future? Or is there a chance that this won’t get worse?

Thank you all for your help and information.

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Autoimmune attacks don’t generally halt all by themselves, but are progressive. If it truly is autoimmune diabetes, the probability is high approaching certainty that eventually you will reach the point of having little or no beta cell function left. That will then necessitate insulin.

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Thank you for your reply!

So it’s basically the same story as with my thyroid; as the autoimmune response further attacks my thyroid it will be destroyed and I will be 100% dependent on thyroid hormones.

If I understand you correctly the same process occurs with the pancreatic cells?

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Essentially yes.

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I would tell you that everyone is different. My understanding is that 15% of women with Gestational Diabetes (GD) go on to autoimmune T1. But the progression of everyone is different. Some people need insulin right away, others go years without needing insulin. And even when you need insulin you should look on it as a successful treatment. You can take insulin for the rest of your life and live a long, healthy and happy life. Who knows, maybe you can even try for a child again. Please look on this as simply stumbling block in life.

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For the moment I’m still processing the news and implications of it all. I guess I just never imagined having so many health problems at age 32…

But once the dusts settles it will be exactly that. I’ve got many stumbling blocks in my life and I’ve never let it stop me enjoying life to the best of my abilities!

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I’m in a slightly different situation with a LADA diagnosis: male, not overweight, active, family history of Type 1 and autoimmune disorders, no (other) autoimmune disorders myself. I was originally diagnosed as Type 2 before antibody tests came back positive. I’m not yet on insulin, and there is a small chance (according to TrialNet) that I may never be. But I’m not counting on it.

I currently treat my diabetes exactly as if it was Type 2, with the blessings of my doctors: I eat low-carb; I exercise a lot (always did this anyways, but added serious strength training 3 days a week); and I take Metformin ER (which helps with dawn phenomenon). Statistically, almost all LADA will become insulin-dependent within 6 months to 6 years following diagnosis. There are a handful of people out there who test positive for antibodies (GAD, in particular) but never become insulin dependent.

For myself, I’ve taken the “deal with what I’ve got on my plate now” approach. While there is a very good chance (like 99.9%) that I’ll have to start insulin at some point as my body systematically does away with my beta cells, for now my “Type 2” treatment plan is working beautifully. My last A1c was 4.8%, and I generally feel great. I deal with some moderate lows when exercising, but never with highs at this point. When and if that changes (and I see my fasting BG or post-prandials creeping upwards steadily), I’ll re-evaluate with my medical team whether I need insulin therapy.

From what I’ve read, and from other LADA that I’ve met, there is an enormous amount of variation in presentation of adult-onset Type 1: some people have instant DKA and get diagnosed in Intensive Care; others (like me and maybe you) are misdiagnosed as Type 2 or Pre-D early in the autoimmune attack; and some “Type 1b” present as Type 1 but never have detectable antibodies at all. I suspect we don’t really understand the suite of diseases we call “Diabetes Mellitus” all that well, but we do know how to treat them effectively at this point. Orals and diet changes when the body produces “enough” insulin; exogenous insulin therapy when the body does not produce enough insulin. It works quite well.

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Please get checked for celiac disease (at least do the research). One major symptom is fertility isssues, not to mention that Hashi’s, TD1 and CD are strongly linked.

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It is felt that about 25% of all people with one autoimmune disease will have at least one more in their lifetime. I actually think the percentage might be a little higher, but in reality, if the percentage is growing it may be because people are living longer.

Living longer in general and a rising number of conditions identified as autoimmune disease might be responsible for more identification of such conditions. I have three autoimmune diseases, diabetes occurred at 17, RA 42 and AS (spinal RA) 57. It is doubtful that I would have made it to 50 if I were DX’d with diabetes in 1964 instead of 1974 (there are many exceptions of course). My point is that longevity might be just giving us new observable outcomes, not that there is some large increase in such conditions.

What I want you to know is that regardless of what you do or do not have these diseases are livable. We do have the ability to have full and complete lives, be it a life with all most all of these autoimmune conditions.

Today, diabetes is the least of my issues. RA is by far the bigger deal, a condition I did not even see coming in 1974. So my message is that with good control and we can be very happy with any of the autoimmune conditions.

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@JoSiBe84,

There is a group of auto-immune diseases that frequently show up together- Hashimoto’s and diabetes are two of them, as is celiac disease. When you have one, you are at higher risk to have more of them. My son (he is 12) is T1D, and will probably develop Hashimoto’s as well.

So, if you were properly diagnosed, you will almost certainly end up depending upon exogenous (=not yours) insulin.

Because you were diagnosed later in your life (since you are 32), it is possible, even likely, that your evolution will be slower than other diabetics who get diagnosed early on. It is also possible that you will keep small groups of beta cells (which generate insulin) active for the rest of your life, which will periodically wake up and secrete a bit of insulin - not enough to take you off dependency, but enough to slightly disturb your regular insulin use patterns.

Once you are diagnosed with T1D, you are in “honeymoon”, and you are still generating some of your own insulin. When you lose these last beta cells, you are out of honeymoon. Some people believe that (and there is some partial evidence for that), by keeping a very tight control over your blood glucose, and by eating very low carbs, you may be able to prolong this honeymoon period significantly.

I am really sorry for your last miscarriage. This must be a very difficult moment for you and your partner. You should know that T1 Diabetes is nowhere near as dangerous as it used to be 30 years ago, and that there have been multiple technology revolutions around it. While it is certainly a sickness that must be dealt with every day, you can lead a normal life with it, likely to the end of the life you would have had, had you not been diagnosed.

Please don’t let this take you down. If you look around this forum, you will find thousands of people, some of which have lived with diabetes for 30 or 40 years, at times when it was immensely more difficult, and deadlier. Today, there is only a 7 year difference in life expectancy between normals and T1Ds, and this shrinks every few years. For people diagnosed now, the difference may only be a couple of years - negligible.

Nobody will tell you that this is an easy thing to deal with. But, with today’s technologies, it is by no means daunting. If you want to read up on it all (that’s the first thing I did), here are the three books that I found most useful to me:

The shock of the T1D diagnostic often causes some depression, possibly compounded by your recent miscarriage. The first thing to do is to keep you in good psychological shape. The rest can wait. All of us here either have diabetes or have a kid with diabetes. We are all coping and meeting happiness in our lives like any other person:-)

Wishing you the very best - Michel

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Hi sweetie. I’m so sorry to hear about your miscarriages. On top of that…being diagnosed. I had gestational diabetes with both of my kids in 2007 and 2010. Had good a1c numbers after th of my pregnancies. Then in 2016 diagnosed with type one at the age of 33 with a1c of 12.8. I do not…at least at this time…have any problems with my thyroid. You are not alone! It was a difficult year for me but I feel a lot healthier. Wishing you the best in 2017 and I have an a1c of 5.8. Keep monitoring and if you have to go to insulin…it’s not bad and you’ll feel more in control. You have to keep yourself healthy for your sweet babies.

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I haven’t got formally checked for it. But I’ve done the research a year ago and feel that I really don’t fit any of the symptoms.
I do have a vitamine D deficiency but that is also a know problem with hashimotos. Other than that I really have none of the other issues and I’ve been checked thoroughly for vitamin, iron, B12 etc deficiency but have none of it.
Miscarriage is also a well known complication with hashimotos hypothyroidism, especially with my extremely high antibody count.

But if I do get any of the symptoms in the future I will ask my GP to get tested.

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And to @WestOfPecos :

Thank you for your kind words. I’d already read that many people with autoimmune disorders eventually end up developing more, and I had already prepared myself that with my insanely high antibody count for my thyroid I would be at an even greater risk than most people. I just never imagined that the next disease would come along so soon.

I think you are right in saying that we are lucky living today because even with the relatively small knowledge there is about autoimmune processes and diseases, fortunately for both hashimotos and diabetes there are proper treatments readily available. I’m already used to controlling my life because of my existing health problems so the diabetes will just be one more. Not ideal, but definitely not the end of the world.

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But the weird thing about celiac disease is that there are over 300 symptoms for it. Some have NO symptoms at all, yet have intestinal damage. I presented with anemia which was brushed off because I already had another anemia – Thalassemia (genetic), (not to mention being a woman), my other vitamin/mineral levels were In normal ranges, except ferritin. My Hashi’s antibodies were over 2,000! So, I understand the miscarriages.

I was shocked that during a routine colonoscopy (yep, was over 50) when during my GI consult, he suggested CD. I had no gut issues. I was super active. Gee, I had just ran a marathon and I was a triathlete. I thought I knew everything about CD since my hubby had been Gluten free 12 years prior to my diagnosis. I did not see that coming at all. I was in complete denial, yet biopsies and a blood test revealed all. It can develop at any time.

Since going GF, calming my CD flare-ups, my nodules and enlarged thyroid are gone. By keeping on top of one AI, I think (just my non-medical opinion) that my Hashi’s calmed down (I experienced some crazy thyroid fluctions that drove even my doctor crazy).

Now, I have diabetes. I have not been tested for TD1, but manage with a LCHF diet, continued exercise, a GF diet and monitor with my meter. Big changes and my doctor and I agreed to do further testing. So, far I think I am a type 2, but you never know…

It is simple blood test. Consider asking for a full panel, because I personally test negative to the TTG screening every single time (tested for follow-up care). this might be due to the Hashi’s.

The University of Chicago has one of the best celiac sites in terms of presentation.

I wish you well.

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Yes mine were almost 10.000 when i first got diagnosed. They’ve been fluctuating between 800-6000 ever since. One gyno said that the antibodies could very well have attacked the fœtus but there have been no specialist ever since (and there’s been a few) that have dared to give the same conclusion. I think the problem is that they still know way too little about it. I’ve asked many endos and specialist what can be done about the high antibody count and they don’t know…

Did you manage to lower them? And if so, what’s your secret?

I’ve tried a gluten-free diet for almost a year (yes i was pretty strict) and my antibodies only went up!!!

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Yes they’ve tested me and found GAD antibodies. So they gave me the diagnosis of adult onset auto-immune type 1 diabetes.
I’m still in the “pre-diabetic” sort of phase where my glucose levels are not high enough to be full blown diabetes but too high to be normal. So I’m not receiving any treatment right now but will certainly need Insulin treatment when i’m pregnant. I need to arrange all that with my endo so will need to make a new appointment for that.

Fortunately I do also have a large team of specialists addressing the many problems I have. An endocrinologist, an endocrinologist who is specialized in diabetes, a dietician, a cardiologist, a gynecologist and an extremely dedicated and kind GP. So I am in good hands.

I think this is just the beginning of my journey and the months and years to come will show me what is in store for me. I will definitely get read up about diabetes and the workings of it all but am going to also take the “cross that bridge when I get to it” approach. If i’ve learned anything these past years it’s that its no use worrying about things in the future you can’t control.

May I ask you, did you have a second pregnancy with both diabetes and hashimotos? And did you have very high antibodies?
I’m still a little worried that I might not succeed having children with all these auto-immune issues and I would love to hear some stories from others who have been through the same…

Thanks so much for taking the time to talk to me.

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@JoSiBe84, what a great attitude you have! I wasn’t like you when my son was diagnosed - it took me a few months to get into the right frame of mind.

I really hope you find the answers you need about pregnancy. The French health system is such that getting plugged into the “right” medical team sometimes requires insider info and working the phone a lot. Finding a team that combines expertise in diabetes/ hashimoto’s and pregnancy must be tough. Are you able to work the system? If not, I may be able to get you in touch with people who could possibly tell you how to do it best (some of my family lives there). [I might have misunderstood your living in France]

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Thank you. It did also take me a while to get to this point as the hormonal dis-balance my thyroid caused left me utterly depressed, exhausted, without energy and generally without any will to live. Thankfully with proper medication I have been able to enjoy life again for the past 2 years.
I just always feel that, aside from the many health problems I may have or may get, I still live an incredibly privileged life. I’ve got a loving, understanding and supportive husband, beautiful friends and a job I go to everyday with all the enjoyment in the world. I live in one of the mostly beautiful cities in Europe (Paris) in a gorgeous part of town and have good food on my plate every single day.
So I have many things to be thankful for and I make sure to remember that every single day.

But there are days where I feel incredibly down and feel that it’s not fair that all of this is happening to me. Yesterday was one of those days…

I have been in Paris for almost 3 years now and it is here that I was diagnosed with all my health issues. I did spend the past 2,5 years searching for the right specialists until my GP basically said: Enough is enough. She got me all my specialists in the one single hospital and it has helped enormously. I’m still in the middle of testing for all the miscarriages I’ve had and still in the process of getting the diabetes treatment plan worked out. But I have a lot of confidence in this medical team as they are extremely efficient and are taking it all very seriously.
Thank you very much for your offer of help. If things don’t work out satisfactory I might come back to you for some contacts. But I think I have finally ended up in a place where they can make things happen…

To be continued…

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There is a terrific article on insulin nation about the trifecta of Celiac, Type 1 and Thyroid issues.

I think it was just published today.

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Sadly, there is no secret. I am not saying that a GF diet helped reduced my thyroid antibodies (I have no proof), but by treating my celiac disease (Gluten free diet) and addressing some intolerances (mostly due to intestinal damage), my thyroid is no longer enlarged and the nodules I had for over 15 years prior are gone. I still take a large dose of thyroid replacement (the damage was done), and I am no longer having thyroid swings. My GYN (high risk specialist) closely monitored my thyroid during my pregnancy.

If you have been gluten free for a year, celiac tests will be negative. You would have to consume gluten for 8 to 12 weeks (called a gluten challenge), which can be very difficult if you do have celiac disease. Perhaps, you were not really that strict?

I recently met a family from Canada in a GF restaurant in Phoenix. We were all on vacation. She had been anemic and tested positive for CD (no gut issues). Within six months, after spending tens of thousands on fertility treatments, she got pregnant and maintained her pregnancy.

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