To take thyroid meds or not to take? That is the question!

Hi everyone!
I’ve been a type 1 diabetic for almost 12 years now and noticed a pattern of my TSH levels going up significantly every time they have been checked for the past 2.5 years. This was most significant in the past year where the TSH levels went up from 1.7 to 3.2 and my latest one was 3.39. I’ve been experiencing hypo symptoms like fatigue, lower body temperature, extreme sensitivity to cold, some initial weight gain and inability to lose weight, a lump feeling in throat, and increased insulin resistance. So far, no antibodies typical of Hashimotos have been detected so who knows what is causing this to happen.

The doc said that she could prescribe me a teeny dosage of levothyroxine (.025 mg) to see if this could help. I have been thinking about this for weeks and decided to go ahead with it and tell her to fill the prescription. However, after talking with a friend whose mom has Hashimotos and has had really bad side effects from synthroid, I’m not so sure what to do. I know my situation is different and her side effects from thyroid medicine are likely due to her being older and being undiagnosed for at least 6 years, but that is still concerning. I would normally just try to find natural things to take and hope for the best except that this could be causing me to have some insulin resistance which is not helpful in my mission to get my diabetes under better control.

Can anyone provide some perspective? Anyone go through something similar? Thanks!

My first piece of advice is to insist that your doctor test free T3 & free T4 because TSH alone is useless. Check out Wonderful site.

If you need thyroid supplementation, take it. Don’t go by your friend’s mother’s experience. Millions of people take Synthroid & it’s been around for a long time. There are more risky side-effects in not taking thyroid supplementation. Dosing thyroid meds is trial & error & requires testing levels every 3-4 months. Hard to control diabetes when thyroid isn’t functioning. It also screws up your lipid profile.

Have you had an ultrasound of your thyroid? I have Hashimoto’s and my thyroid is full of cysts and nodules, only one of which was big enough to palpate by hand. You might be full of cysts and nodules, too, and not know it just from blood work. I’d get it done soon if I was you, as your symptoms sound a lot like mine did: bone-chilling cold even on warm days, lethargy, depression, weight issues. I also had muscle cramps, thinning hair, thin and fragile finger-nails, hair loss to the outer aspect of my eyebrows, and some muscle wasting (e.g. to my calves, despite lots of exercise and a good supply of protein in my diet.)

I’ve never experienced troubling side-effects from Synthroid. You start low and titer up slowly.

I agree with Gerri – you need the other tests for know for sure because TSH doesn’t really tell you anything. Go to the STTM website and learn as much as you can – most doctors really don’t get thyroid and you want to make sure you are getting proper treatment.

If you need thyroid meds, it is really not something that you want to live without. I have been on thyroid meds since the late 90s, but 2 years ago was when things really went out of whack. My Free T4 was so low it was not even registering a number – my thyroid was basically not functioning. I felt like I was dead. I gained 30 pounds and did not thing but sleep and cry all day.

I can’t do Synthroid but there is no reason to think because other people had a problem with it that you will. My mother is 78 and had her thyroid taken out when she was 19. Synthroid wasn’t around back then, but she takes Synthroid now. If you end up having a problem with Synthroid, there are other drugs you can try. You really need something!

Thanks for the fast response! That website was very helpful, I remember looking at it a while ago and that being one of the main reasons why I switched endocrinologists to begin with. The doc has tested my free t4 and free t3 and has done a variety of other tests on my thyroid. My free t4 and free t3 are in the lower range of normal. However, I keep forgetting about asking about my adrenal glands though I assume they are probably a bit depleted anyways haha.

What is amazing is that this is the first endocrinologist I have been to who has extensively tested my thyroid even though I’ve been complaining of hypothyroid symptoms for a while, my grandfather had to have a cyst removed from his thyroid at one point, and the whole autoimmune disease connection between type 1 and Hashimotos/other thyroid problems!

Anyways, I do feel a little better now about this, thanks!

Your FT4 should be about midway of the labrange and the FT3 in the upper 2/3rds. If yous are both at the low end, you are having thyroid problems!

I think I qualify as being in the low end, I digged out my lab work I got done a month ago and my FT4 is 1.1 (ref range of .8-1.8) and FT3 2.8 (ref range of 2.3-4.2)!

No, I have not had an ultrasound of my thyroid but I was thinking that this would be a good idea. Apparently, I don’t have significant antibodies for Hashimoto’s so my endocrinologist didn’t feel that a scan was necessary. I’m not quite sure how to go about getting a script for an ultrasound from any doc if my endocrinologist (who is supposed to be the expert on this) feels it’s unnecessary but perhaps my primary care doctor I never see will take pity on me and refer me to someone who can do the ultrasound! Ugh doctors!

The FT4 isn’t too bad - midway would be 1.3. Your FT3 is on the low side. Sometimes adding the T4 (which is what Sythroid is) will help your body produce more T3. If you get retested after starting the Synthroid and your FT3 hasn’t gone up, you may need to add in a T3 drug like Cytomel.

Well, I don’t know about the antibody test. Maybe that’s a newer approach? I was diagnosed in 2004.

That is the danger of talking to others with something similar! What works for some may not work for others. Other people might have side effects and you may not - how about trying the dose and seeing how it affects you - you might not get the side effects, but you need to take SOMETHING as thyroid problems can make you very ill, and will not help your diabetes any.