Type 1 and thyroid issues?


#1

Does anyone with Type 1 Diabetes have autoimmune thyroid issues? I have regularly been checked by my endo and have had possible symptoms in the past. I have noticed recently my neck looks a little puffy and last night I noticed the area close to thyroid glands was a little puffy. It really isn’t noticeable but for me I see a difference.
If you have Type 1 and Thyroid disease how were you diagnosed with autoimmune thyroid? Thanks.


#2

Yes, I’ve had Type 1 for 27 years (in a few weeks) and Graves’ disease (autoimmune hyperthyroidism) for coming up on three years.

I had my TSH checked yearly for decades and it was always normal between about 1.5 and 2.5. I developed symptoms very suddenly over the course of about a month. Overheating, insomnia, tachycardia, mood swings, weakness, shakiness, stomach upset, fatigue, cognitive issues, uncontrollable high blood sugar. Probably more that I’m forgetting.

I thought at first that I was just fighting something off, since it was winter, and I took numerous days off work. But a few weeks passed and if anything I felt worse, not better. One day when I was so weak I found it hard to lift a carton of almond milk I made an appointment with my GP for the following week. A few days later, however, my heart started racing like crazy and would not slow down, and I was feeling so bad I went to emergency. They admitted me overnight and it was found that my TSH, which had been 1.6 nine months earlier, was undetectable and my free T3 and free T4 were both very high. I started on anti-thyroid medication and a beta blocker in the hospital. When I saw my endocrinologist six weeks later I found out that the test they had run at the hospital for anti-TSH receptor antibodies (which has not been available yet when I was discharged) was very elevated. I also had several other tests including a thyroid ultrasound and an echocardiogram.

I’ve been taking anti-thyroid medication ever since. About a year ago I had my anti-TSH receptor antibodies re-checked to see if I might get off medication, but they were still positive. Recently my TSH has come back high, so we are re-adjusting medication and hopefully will get re-balanced soon.


#3

Thanks Jen, wow that is scary. Glad they figured out what was going on quickly. My doctor did check my levels and the free level too about a year ago. It definitely makes sense that this type of thing could happen quickly. I have had Type 1 for 25 years and before I was diagnosed I seemed to get really sick fast. It seemed to be about over a months time. So it makes sense that things could get bad fast. I will have to get blood tests again. I wasn’t sure of other tests they might want. I’m so used to doctors wanting a ton of tests. So it’s good if only blood tests. I have had some problems recently with my hair getting really thin and even my eyebrows. I also have issues sleeping and am overly exhausted. But I have had these types of issues for a while. Plus I am always cold even this summer. I think it has just gotten a little worse lately.


#4

I have had Type 1 for 52 years, and I have been taking Synthroid for hypothyroidism for at least a decade. Yes, Type 1 and thyroid problems can go hand-in-hand since they are both autoimmune diseases. My daughter, who is NOT diabetic, also has thyroid issues and has been on medication for that for almost 30 years. I have dermatomyositis, too, which is yet another autoimmune disease where my immune system attacks my muscles. Not fun. So please do yourself a big favor and get your TSH levels checked again. As Jen said, the autoimmune system can change quickly. See your doctor to get blood work done as soon as possible. Hope you feel better soon.


#5

I’ve been T1D since 1996 and was diagnosed with Graves’ disesase in 2001. I took a couple different medications on and off for my thyroid since then (first PTU and most recently methemazole) but have been off all meds since the end of January 2018 and am feeling great. My body weight and apetite have been stable and energy abundant. I check my resting heart rate and heart rate variability every morning and all are solid. My blood work looks great too! I was first diagnosed because at age 13 I was eating EVERYTHING, wasn’t growing or gaining a pound (despite always being one of the taller kids), and was constantly exhausted during basketball practice. Once I got on PTU I grew, put on weight, and got my conditioning back.


#6

Yes.

I believe we had positive Thyroid antibodies. But that was some years back so perhaps I am confused on that.

In any event, we were dignosed with an autoimmune Thyroid issue however it did not at that time require treatment. But we were told there was no question it would in time. So, we had thyroid panel testing done every six months. T3, T4 total, T4 free, TSH.

There was always minor variation in the results. (We always used the same lab to make comparing results easier and more accurate.) However at one point there was a significant change. At which time we started the Synthroid at the lowest dosage. Checked the Thyroid labs six weeks later then six months. Levels had returned to what we previously were used to.

So now, we continue with the Synthroid and have yearly Thyroid testing.


#7

I also had a thyroid ultrasound and an echocardiogram. But I think this is mostly for Graves’ only (and my endocrinologist said he thought the echocardiogram the cardiologist at the hospital ordered was a bit overkill).

I think that in general autoimmune thyroid issues tend to develop more slowly than what i experienced.


#8

I will definitely get tested. My doctor mentioned a while back she could test every 6 months. I have never noticed a little swelling around where my glands are in my neck until now. My mom this past year found out she has thyroid issues so it wouldn’t surprise me if I start having issues. She doesn’t have Type 1 but has Type 2 Diabetes. I definitely have been cold when I am indoors this past summer. I wear a lot of sweatshirts. I just haven’t been concerned because my levels have always been normal.


#9

I was diagnosed with thyroid disease in late 1980s, after having T1D for 25 years. I remember endo calling me at home, after blood work was done after recent appt. I had not expressed any unusual symptoms at the appt. When he called, he asked if I had been feeling tired, and I said no. He was shocked based on how low my numbers were, and started me on synthroid right away. After starting, I definitely noticed more energy. I think the loss of energy was gradual over time, and I had increased job related hours and stress/less sleep, so had assumed I was slightly more tired due to that.
Have been on various doses continuously since then, and levels are checked yearly.

(I use the generic levoxyl, which had to be taken off the market a few years, and tried other generics that didn’t work as well. So used synthroid at higher cost. Levoxyl is available again, but few people use it, so it is not stocked and always takes a few extra days to get from CVS.
So be aware, there are differences in the generics. )


#10

You need a blood test to be sure of thyroid disease, but irritability, being underweight or overweight, feeling hyper or lethargic, or feeling too warm or too cold, can all be symptoms of having hyper- or hypothyroidism. Young women often have some slight neck swelling, which can be misdiagnosed as a thyroid problem.


#11

I’m fairly sure this is a misconception. I have seen lots of people who have never had hyperthyroidism mention being hyper as a symptom. I have never seen anyone who actually has hyperthyroidism themselves say that they felt hyper. I certainly didn’t—I felt terrible for weeks unless I was sitting or lying down. Very fatigued, cognitive issues, muscle weakness. I spent about six months just struggling to get through the normal work day. Any and all extracurricular activities ground to a halt.


#12

Acute Med Surg. 2015 May 12;2(3):147-157.

Acute and emergency care for thyrotoxicosis and thyroid storm.

Idrose AM

Thyroid hormones affect all organ systems and, in excess, can cause increased metabolic rate, heart rate, ventricle contractility, and gastrointestinal motility as well as muscle and central nervous system excitability. Thyroid storm is the extreme manifestation of thyrotoxicosis with an estimated incidence of 0.20 per 100,000 per year among hospitalized patients in Japan. The mortality of thyroid storm without treatment ranges from 80% to 100%; but with treatment, the mortality rate is between 10% and 50%. The diagnostic strategy for thyroid storm may take into consideration Burch-Wartofsky scoring or Akamizu’s diagnostic criteria. Multiple treatment aims need to be addressed in managing thyroid storm effectively. This paper puts together all aspects to be considered for the management of hyperthyroidism and thyroid storm during the acute and emergency phase as well as consideration of special populations.


#13

Sure. I had all of those symptoms and more. I wouldn’t call any of it “feeling hyper”, though. When people say “feeling hyper” in opposition to feeling lethargic, what comes to mind is having excess energy and needing to do something active… Definitely not how I or anyone else I know felt when our thyroid levels were high.

I only clarify this becuase I had NO idea about hyperthyroidism or its symptoms prior to diagnosis. I think it’s super important that people are aware of this condition, because even though it’s much less common than hypothyroidism, left untreated it can be fatal. And I just don’t think “feeling hyper”, which I have heard several people say, is a good way of describing symptoms.


#14

Since I was in a position to self-medicate at will and had a lot of work to do, I used to take thyroxin to keep me alert and help me work longer and harder. I really made me hyper. In Germany I used to take injections of noradrenaline for the same purpose, but I found thyroxin more effective.


#15

Thanks for all the information. I do have a little swelling in my neck area. I can see where my thyroid glands are now and I never remember being able to see them. I was afraid I was being a little paranoid. I will definitely ask to have my thyroid checked again at my Endo appointment this next month. I looked and my last test was the end of last year and the TSH was 2.94. They tested that and the free T3&4 which were also normal. But either way it’s time to recheck.
I know I have had other hormone levels low before when I had blood tests. I was also tested for Addison’s a few years ago and that came back negative. I did have low Cortisol in one test though.


#16

Taking T4 on a one-off basis, which may not even have resulted in thyroid levels outside the normal range, is very different from having your thyroid uncontrollably pump out increasing amounts of T4/T3 continuously over a month or more. It would be like someone saying that having mildly elevated blood sugar on occasion creates the same symptoms as going into ketoacidosis. The two situations are completely different! In the former, the body still has control over what is happening, while the latter is a downward spiral the body cannot recover from without medical assistance.


#17

I have had increasing hypothyroid symptoms to the point now that I barely have enough energy to function, can’t lose any weight no matter what I do, have memory issues all the time, and muscle and joint weakness and pain etc. But my TSH is always normal. My endo usually won’t test more than just TSH and occasionally T4, and my last test which was this time last year the T4 registered a bit below the reference range. and it was close to that the test before as well. But no one ever said anything to me because I guess “it’s in the range” is good enough for most doctors. And if you TSH isn’t high they just think it is normal.


#18

I must confess that my self-medication with thyroid continued for six years, which was how long my program of study lasted, and a certain jitteriness and hyper quality was present all through that time. It was not pleasant, but still, it was useful for getting all my work done. And, as the article I quoted above says:


#19

Have you been tested for vitamin deficiencies?

Might be a good time to get a different endocrinologist. You may be able to get a PCP to run the tests you’re looking for. I don’t know what other tests indicate hypothyroidism.

Definitely not something to ignore though.


#20

Interesting story.

I have been diabetic for 47 years. About 35 years ago I needed life insurance and had an insurance physical. I didn’t get the insurance, but the examiner noted a small lump in my throat.

I immediately consulted my endo, who did a needle biopsy and diagnosed papillary carcinoma of the thyroid.

I was scheduled for surgery. After the surgery the surgeon told me that the endo had hit a hole in one, because my thyroid was completely destroyed by Hashimoto’s! He said the gland was “mush” and that the endo got the only viable cell.

The only symptom I had was being a little tired. Nothing overt.