Type 1 and thyroid issues?


#41

I know many people that are diabetic that have had thyroid issues of some type. Personally I have been a T1D for 41 years and have great control as my A1C’s always run 5 to 6 and I have had no long term effects from my diabetes yet except how it might be related to my thyroid issues. In my case I started out with an enlarged thyroid and ultimately had thyroid cancer, which had to be removed.

It doesn’t sound like the scientific community knows the connection between diabetes and thyroid problems but one thing that could be the reason in my case is that I’ve had a DNA screening done and it showed that I had a higher chance of T1D and thyroid cancer (two of the top issues it flagged). Unfortunately I did the screening after these happened but none the less it was amazing that it was right on in identifying these issues.

I did this relatively inexpensively by getting the testing done at 23andme and then sending the results file to a DNA analysis service called Promethease because 23andme has to get FDA approval for everything they are allowed to report, which for now is very limited. Promethease runs a very detailed report on what’s been found based on the latest research. The good thing is I can rerun the report very inexpensively at anytime to update it with the latest research data.

The value in having this data is that it helped me identify potential issues and take measures to keep and eye on them before they become a major problem. One word of warning is don’t do if you think you are the type of person that could get overly paranoid with the results. It does not guarantee the things it flags will happen but you could have a higher chance of it happening. This is an area of medicine that is getting better and more useful everyday!

Bottom line is there is a lot of evidence to suggest diabetics should get their thyroid checked regularly and I’d also suggest you consider having your DNA screening done.


Diabetes and genetics
#42

For the last several years, my thyroid tests have also been “in the range”. My last lab work, however, included a test for antibodies, and that was the kicker, with a subsequent diagnosis of Hashimoto’s thyroiditis. I see my endo again in December, and will have to have another round of bloodwork and an ultrasound before then.

I have never really been what you’d call energetic, though I can usually get through a day watching a toddler ok, and I was either working or going to school all my adult life. Weight loss has been an issue all my life. I’ve always been overweight, and have great difficulty losing weight. That’s been a lifelong issue, too. The things that made me pester my endo were hair loss and increasingly thin skin, which my primary told me could just be aging issues (I’m 66). I’ve been getting thyroid tests for the past two years; this last test for antibodies was the one that made the difference.


#43

I developed hypothyroid a couple years before I became diabetic. It was during the same antibody tests determining type 1 that I found out it was Hashimotos. My oldest son, who is also type 1, since childhood, developed vitiligo first, then type 1 about 6 months later. So far his thyroid is ok.


#44

Thanks for all the information everyone. Well I’ve been diagnosed with Hasimotos Thyroiditis. My levels were normal but I had positive TPO antibodies. My Thyroid is still swollen and I had an ultrasound. Good news is they ruled out cancer. So for now no medicine which is good. I just have to keep getting my levels checked.

Weird thing is my doctor said my salivary gland is swollen and told me to see my Rheumatologist to rule out Sjogrens Syndrome. I think I was tested for that years ago but didn’t show antibodies. I have just had a positive ANA speckled pattern (not high level though).


#45

Yes I also have hypothyroidism. They say there’s a ‘nodule’ or something in my throat. I take pills like synthroid. The dosage keeps having to be raised. I find I get tired sometimes from the hypothyroidism, and I’m a little sensitive to temperatures.


#46

Consider getting your thyroid antibodies checked to determine the cause of your hypothyroidism.

I have both Hashimoto’s Thyroiditis and Celiac Disease. Once I went Gluten Free after my celiac disease diagnosis (only known treatment), my nodules and enlargement resolved. Unfortunately, my thyroid had been permanently damaged and I cont8nue to take a thyroid replacement daily.

Thyroiditis, celiac disease and TD1 are commonly linked. Please consider screening. It can be hard to manage your conditions if in fact you are not able to absorb your medication well.


#47

Yes Hashimoto’s is what I have. Sorry I should’ve said. Interesting. I think the reason my dosage keeps needing to be raised has to do with the levels perhaps? And to prevent the nodule from getting bigger I think. Interesting. I did GAPS for a few months, of course a little adjustment for the diabetes. But no rice, no flour, no potatoes, no pasta and I felt great. Was leaner more color in my face everything more energy. I think I will need to check some things out. Thanks. Ok


#48

I also have hypothyroidism as well as autoimmune arthritis that affects my skin and my digestive system. I had these autoimmune diseases for many years prior to my diabetes. In my case, the diabetes came last. I am not responding to oral meds and my GP has told me that he and the endocrinologist think I am probably type 1. I suspect I will be starting insulin shortly. The clue was the other autoimmune diseases, how quickly my diabetes came on and the fact that I have lost so much weight.

Cheers,

Jenn


#49

I would suspect that your thyroid hormone replacement dosage is being increased because your thyroid is failing or not functioning properly, but I am not a doctor. It could also be due not being able to absorb your medication too. Hence, the recommendation to get screened for celiac disease.

I had Hashimoto’s for 15 years prior to my diagnosis of celiac disease. In retrospect, I probably had celiac disease long before my Hashimoto’s, as I presented with only anemia which was pretty much life-long.

Scripps in San Diego conducted a small study on Inflammatory Bowel Disease patients testing the Autoimmune Paleo Diet (which happens to be gluten free). No one changed their medications, but in six weeks partipants achieved 78% remission based on lab tests. Of course, larger studies are needed. Scripps is crowd funding to test Hashimoto’s patients next using the AIP diet. Pretty amazing that dietary changes can help heal or at least help better manage autoimmune disorders (but many of us already know that managing diabetes).


#50

I was diagnosed when the symptoms became impossible to ignore. I was in my mid-30s and had type 1 for about 15 years at that time. (I didn’t develop type 1 until college.)

Had I known about this connection, I’m sure I wouldn’t have suffered as long. I went undiagnosed for, at least, 6 or so months because I remember that semester as I was teaching. I was seeing an endo, but, I can’t remember the frequency of blood panels. Maybe once a year? I just noticed changes, but I naively attributed the changes up to bad luck and a character flaw on my part. Basically, I was noticing that I was looking really strange in photos because my eyes were bulging, and I wasn’t able to sleep. A side effect of not being able to sleep was that I was showing up to work late.

He finally gave me a blood panel test and ended up that I had Graves Disease. I was living abroad in South Korea at the time, and my endo chose a block and replace treatment to let my thyroid rest: methimazole and a hormone to replace what my thyroid wasn’t making. It’s an approach they do in NE Asia a lot. I think had I been in the States they would have been radioactive iodine. I’m glad I took oral meds instead as it gave my thyroid a chance to come back.

When I returned to the States, I was uninsured, of course, but I had a year of meds with me. I took them until I ran out. I can’t remember exactly what the order of events was, but, eventually, I got health insurance. I was in NYC at the time. It was an odd system because I wasn’t referred to a diabetes clinic immediately. It was only after I had a really bad low as I’d become hypothyroid and my primary care doc knew I needed extra care. (Duh!) I became a patient at the Naomi Berrie Diabetes Clinic at Columbia. The test I got after my first visit there showed I was in remission from Graves Disease.

However, eventually, I developed hypothyroidism. I take oral meds for that now and get bloodwork done every three months to check my thyroid numbers before I have my quarterly visit with my current endo.


#51

Curious, how long did it take you between your Graves’ remission and developing hypothyroidism? I took medication for Graves’ for three years, but two months ago went into remission and stopped medication. My doctor said there’s always a chance Graves’ will come back, and I’m getting antibodies checked to see if they are still positive (which means it might come back fairly soon). But I’ve also read numerous accounts of people becoming hyopthyroid after their Graves’ goes into remission (not from radioactive treatment).


#52

Unfortunately, I really can’t tell you because I was focused on other stuff at the time: settling back in to living in the USA, building a social circle in NYC, and adjusting financially to coming back during a recession. Exciting in some ways but also stressful.

I was just happy to have a top-notch endo and medical team again. I was only in NYC for a couple of years, so it wasn’t long. Maybe a year or so at the most. I was uninsured for a bit, so I wasn’t being tested until I got under a competent endo’s care at Columbia U’s Naomi Berrie Diabetes Clinic.

Since being diagnosed as hypothyroid, things have been much easier actually as I’m pretty good about taking my medication to treat it and try to stay on top of making sure I have those tests run every 3 months. Block and replace was crazier than just one pill a day. My current endo is awesome and changes my dose when the my numbers start trending too close to the line.

However, just because it happened to me doesn’t mean it will happen to you. You might stay in remission and have no more thyroid drama. Fingers crossed for you!


#53

Thanks! Of course, it is impossible to tell what the future will bring. Due to my age (in my 30s) and the fact that I didn’t go into remission at 18 months, my endocrinologist had pretty much told me remission wouldn’t happen. He would have let me do radioactive treatment if I’d wanted it. We were both very surprised when my thyroid levels suddenly went low. The only off-medication TSH I’ve had so far was 3.7, which is in the normal range but still seems a bit high to me (before I developed thyroid problems my TSH was always 1.5 - 2.5). I’m getting re-checked in a few days, for both TSH, free T3/T4, and anti-TSH antibodies, so that will give us more information about whether the remission is likely to last a long time or not. Regardless of how long it lasts, my BG control has certainly been easier since remission, for three years on medication it was a rollercoaster, so I will enjoy it for however long it may last.