I have been T1 for almost a year now. I have a new A1C of 6.0 (Down from 13.7 at onset) and just finally went to see an Endo. She noticed that I have an enlarge thyroid. My test came back “normal”. My question is this, I have searched and searched for info on all of this. I’m finding that thyroid issues are common in T1’s. I have also read that TSH levels higher than 2.0 should be treated as opposed to older standards of over 5. My endo obviously believes the older standard. I have a TSH of 3.7. After reading, I feel that it should be treated. When I found out the symptoms I almost fell out of my chair. It almost describes how I feel to a T. If treatment of this would make me feel better, why not treat it? What if she refuses, or sluffs me off as if I’m paranoid? I see her next week, if anyone has any ideas or if you think I am a bit paranoid please let me know.
Get your doctor to treat it, share with her all the research you have found and if she still doesn’t want to treat it, find a new doctor who is a bit more up-to-date. 
Hi Marnie -
I am hypothyroid. I was T2 for years (I thought - now looks like I was always T1.5 - LADA). Actually I was diagnosed with the thyroid issue before the diabetes.
Unfortunately, there’s not a lot out there for both autoimmune conditions - ya really gotta search. I’m preparing to start of group for the likes of us - sounds like you might be interested?
DON’T ACCEPT not getting treated. However, I would caution against Synthroid unless you would like hair loss and other side affects. I take Armour Thyroid - have for years. There’s a lot of “misinformation” put out by the makers of Synthroid.
Here’s a good site - along with all the info you need to “convince” your doc (or send you to a new one). http://thyroid.about.com/
Feel free to contact me by email.
Cheri
Hi Marnie,
I had low thyroid right after my son was born (about 12 years ago), and they put me on Levoxyl, Even when my levels came into the normal range, I still felt so tired every day. I read the book “Thyroid Power - 10 steps to Total Health” by Richard and Karilee Shames. I then went into my endo and asked for some T3 in the form of Cytomel. It gave me some energy again! (The Armour is an all-natural source that contains T-3 and T-4, but in a fixed percentage.) I like the flexibility of upping my T-3 just a little bit on days when I’m extra fatigued, like from PMS or am fighting an infection.
Thyroid dosing is complicated, and it’s really important to work with a doctor or a physician’s assistant who wants you to feel good.
I have not had a problem with hair loss, except when I was not taking enough medicine.
Once you have been DX’d with hypothyroidism, you can float back and forth between hypo and hyper until your dose is correct - or sometimes it just happens (high or low) for no apparent reason, which is why you need to be tested regularly (I am tested every quarter, along with my A1c).
I found that if I’m balanced in my thyroid, my BG adjusts lower. If I’m out of balance (high or low), my BG adjusts higher.
My Endo wants my TSH to be around 1. According to the tests I was a little off and I have no symptoms of Hypothyroidism. I am now up to 75 micrograms of Synthroid. Definitely get it treated because there are so many symptoms from hypothyroidism. Stuff like frozen shoulder, being tired and worn out more than usual, the list is so huge that I can’t do it justice here. Also, take the name brand drug Synthroid do not take the generic.
Dave
I have had my right shoulder blade operated on twice. Hmm… I wonder if there is a link? I have cronic pain in my upper back/shoulder blades/neck. Not stabbing pain but constant grinding and ache, the fun just keeps on comming. Really, being T1 isn’t enough? Okay, done moaning! ((UHHHH!))
Hi Marnie,
I’m in a similar position. I had a good endo who tested and found thyroid antibodies that were more than 10 times the maximum limit (so determined that I have Hashimoto’s hypothyroidism). This wasn’t such a shock as all women in my family have hypothyroidism.
BUT my TSH is still normal. It was around 3.5 last year. This year, it came back at 2.5.
I tested my basal body temp and was getting readings between 96-97 degrees F.
But the doctor did not suggest starting on medication.
I’m planning for a pregnancy next year and I know that it is supposed to be under 2 (or 2.5?) for pregnancy.
The doctors are waiting for me to have a high TSH level.
My temp has always ran low, as well as my blood pressure. I will send wishes of hope your way for a happy and healthy pregnancy! Its worth all this extra effort!
I was hypothyroid for 10 years before I got diabetes, they first diagnosed me with T2, now its LADA or T1, what ever you want to call it, I just take a pill every day and all is good in thyroid world, keep it in check, I am also very anemic, they all go together, what a lovely endocrine system I have, what will I get next, A CURE I HOPE, good luck
Funny, I’m in the same boat.
My antibody levels are 800+, my latest TSH was around 6. My endo said at my last visit that if I start developing significant symptoms she’d start treating.
I haven’t noticed any strange symptoms lately, but right around my “diagnosis”, if you can call it that, I was exhausted all the time, my hair was falling out like crazy, and my blood sugars were ALL over the place. For some reason, the only symptom I have now is that my fingernails are different than before. Think I’m back in range…for now…Sounds like I’m bouncing around and it’ll take me a while to go consistenly hypo. We’ll see…
If you think that you should be treated, PUSH the issue with your doctor. You have a right to take the meds that you think you need after discussion with your doc. If your doc doesnt take your opinion and your quality of life issues into consideration, drop em.
It is such a relief to know Im not the only falling apart! I have a crap load of info I am going to take with me to the endo. This will only be my second visit with her, my primary concern before the TSH stuff was to start on a pump. Now I just want to see if I get the thyroid treated if I will feel more human. I thank each of you for easing my fears of being the paranoid patient.
Just to second Cheri here-- all the women in my family who are hypothyroid (which is most of them) reported MUCH better results with Armour than with Synthroid.
But some doctors are hesitant to prescribe Armour (because it’s older and less advanced???). Not sure why.
Hi Breanne! Your doctor was not concerned about a TSH of 6? Do you think it should be treated?
I am not saying one drug is better or worse but hair falling out is a symptom of hypothyroidism so it would be hard to say that it was the Synthroid that caused it.
I was diagnosed hyperthyroid in 1994; they were unable to regulate it with meds and so my thyroid was destroyed with radiation. It took awhile to find the correct dose of Synthroid but once they did I was stable on that dose for 13 years. Then along came diabetes…lol. I started losing weight which was one of the signs I had that made me know I had diabetes. But I continued to lose weight even after my blood sugars were stabilized with diet/oral meds. I lost 40 pounds and then when we checked my thyroid discovered I was very high (.087). Somehow the diabetes had destabilized the thyroid and my usual dose of Synthroid was too much; we reduced the dose and all was well.
I am having a hard time stabilizing my diabetes, my numbers are all over the place. My PCP thought it was because of my thyroid but all the research I have done says that yes, hypo or hyper thyroid can make it hard to manage diabetes, but once it is stable it shouldn’t be a factor. I am now suspecting I am 1.5 and am seeing an endo next week. I have never heard of treating a thyroid at 2.0, that sounds well within the normal range; could you point me to the information about that please? (I am currently 3.74 and was thinking of that as low/normal).
http://www.thyroid-info.com/articles/aacereversal.htm
This is one page that has evidence that the condition should be treated over 3.0. Once I get home I will find the other articles that stated the optimum level is under 2.0. I have all my research at home waiting for my appt. tuesday.
That is pretty crazy my Dr. wants me to be around a 1 so 6 is out of control high!! Time for a new doctor!
I have had type 1 DM for 17 years and had been having classic symptoms of hypothyroid for many years. My endo always felt my thyroid and tested the TSH which was always within the “normal” range so did nothing. My PCP listened to my symptoms however and as well as checking the TSH (which again was “normal”) but also checked free T3 and free T4 (which were not normal). So she started treating me. After a year of changing doses and checking on symptoms and lab values, I have a set dose and feel so much better. Which medication used is of course is important but of even more importance is never changing from one to another, brand name vs: generic, pharmacuetical vs: natural, etc. Hope your doctor is willing to work with you on this.
I’m interested in this, I didn’t know that the optimim level was 2. If I mention to the doc that I’ve found something out on the internet his eyes just glaze over. All of my results came back apparently normal. All of my first cousins have thyroid problems, I need to do some more digging.