Type 1 and Thyroid issues but normal labs?


#1

Have any Type 1’s had normal Thyroid levels with an enlarged gland? My Thyroid has been swollen for about a month. So I went to my doctor and she confirmed my Thyroid was swollen and nontender. The good thing is she didn’t feel any huge lumps when doing the exam. She states that I should have an ultrasound to rule out Cancer. I asked if we could do blood work instead. Well I just saw the preliminary test results and the TSH and T4 (free) were normal. I have an Endo appointment soon so I will see what they say. I am guessing it could still be autoimmune since I have 2 AI issues already.


#2

What was the actual values and the lab ranges? There is normal range (in the opinion of the lab), and there is optimal. The two are not necessarily the same. They could possibly do an ultrasound.


#3

My TSH was 2.6 and T4 free direct was 1.14. The last time my Endo checked it was 2.94 (TSH). The range shows as TSH normal (0.45-4.50) and T4 (.82-1.77). My General doctor did say that the Thyroid labs could be normal (before tested) and still suggested the Scan. I just wasn’t sure if maybe something was starting to happen with my Thyroid and it’s just not bad yet. My neck has been swollen for a month and I haven’t been congested or sick. It’s not extremely swollen though. I know with my Type 1 Diabetes I seemed to get sick real fast but with my Autoimmune Arthritis it was a long time before evidence showed on xray. My blood tests didn’t show much.


#4

I don’t think I have any swelling in mine, but my t4 has been pretty low the last couple tests, but TSH was normal. There are other thyroid tests which some doctors, like my endo, refuse to do even though there are issues with the thyroid system that don’t show up with just TSH or TSH and T4. I have all the symptoms of hypothyroidism, but my endo seems to like to treat for “in range” and not what is actually optimal. So even though my T4 lab before last (haven’t gotten the results on that one) was flagged low from the lab (it was .6), since it wasn’t extremely low and my TSH was still in range, he didn’t even say anything about it.

Secondary hypothyroidism is when the issue isn’t the thyroid itself, but something else in the system isn’t stimulating the thyroid to produce more, or T4 isn’t converting to the active form as well. In your case it may be that there is something wrong with your thyroid as it is swollen, but it may still be functioning. If it has something that has to be removed though, it would likely cause you to be hypothyroid after that.


#5

So true! I have lived with hypothyroidism for over 30 years. I’ve basically been taking a single dose of synthoid each day and my doctors have always been happy with the lab results and I didn’t pay much attention to my thyroid treatment.

I recently started looking at all my medical issues due to my worry about cardio-vascular disease. I’ve been doing a lot of reading of Dr. William Davis of Wheat Belly fame. I am the middle of his more current book, Undoctored.

The issue of thyroid lab numbers is discussed in the context of managing cardio vascular disease. Dr. Davis agrees that thryoid labs could be much better managed. Here are some of his recommendations.

  • Make sure that your next thyroid panel includes, TSH, free T3, free T4, reverse T3 and thyroid antibodies.

  • Target TSH for < 1.5 uIU/mL

  • Aim for the upper half of the reference range for free T3 and free T4

  • Target the lower half of the reference range for Reverse T3

I know that thyroid issues can be complicated and I’m just starting to learn more about thyroid treatment. I think that my endocrinologists over the years have been too complacent with my thyroid tests and they accept “good enough” when I could be doing better.

I have long-standing symptoms of cold hands and feet even when the weather is warm. I often wake up at night with being too warm. I know that the thyroid plays a role in regulating body temperature. I’m thinking that these symptoms may be the tip of the iceberg and my thyroid disfunction is affecting other important things like atherosclerosis.

We should not accept “good enough” from our clinicians. We should demand shooting for optimal, especially with thyroid labs.


#6

Especially since the thyroid hormones are so important to the function of pretty much everything in your body.

I had asked about this and my endo said that those other tests and hormones aren’t accepted as legitimate by anyone in the current thyroid specialists community. I asked my regular doctor to do them before that, and he said he would but either the lab didn’t do it right, or he didn’t actually order them because he only tested TSH.


#7

Thanks, I will definitely ask for any antibody tests. My regular doctor said they don’t usually test the T3 level. So I will also ask my Endo to check T3 again since that wasn’t done.

It was easy for my doctor to diagnose me with Diabetes because my blood sugar was almost 500. That was a long time ago though so I am not sure if doctors even checked antibodies back in the 90’s. I found out last year I have Seronegative Spondyloarthropathy which is Autoimmune Arthritis through the HLAB27 gene when other blood tests showed nothing (except slightly abnormal ANA).


#8

Thanks, there is definitely conflicting information out there about optimal levels. I have had so many symptoms over the years that could be explained by Thyroid issues. But I guess the problem with diagnosis is that so many things can cause these types of symptoms.


#9

That seems to be the standard attitude, which boggles my mind since T3 is the active hormone. Wouldn’t you care most that the active hormone is at the proper level? There are plenty of reasons why it wouldn’t be even when T4 and TSH are normal…why else would there be drugs with T3 in them if T4 was all that mattered? It frustrates me that I can say that i don’t have to pay anything for the test, so you aren’t saving me any money by not doing it, yet they still refuse. Doctors can often be stubborn and prideful and don’t want to do anything if it isn’t their idea.


#10

Just got my most recent test results back. It was .73 T4 this time, so obviously they don’t think there is anything wrong there :neutral_face: .


#11

Yeah I don’t understand that. I am just hoping my Endo will do those autoimmune antibody tests first before I have to get a Thyroid scan. I realize that my doctors know way more than me. But I just know how I keep having Autoimmune issues. I wouldn’t mind doing the test first though if I haven’t had a million tests for other things in the past few years. I have even had a stress test because of shortness of breath. I’m glad the tests came back good and I don’t have heart issues but I hate wasting so much money. So it seems like I have had a ton of possible signs of Thyroid disfunction. I just never have had it show on blood tests. Maybe my swollen glands are enough for them to figure it out.


#12

That’s crazy. Have you had more than just the Thyroid tested? I have had other hormone tests at my Endo in the past. They have even tested my Adrenal gland function. Of course nothing showed up except a low Cortisol with blood tests. My Endo said my Adrenal gland was working ok though. But that she could recheck in the future.

I wonder if something else could cause a normal TSH and low T4? You might want to consider trying to find a second opinion. I have had a Endocrinologist in the past that completely messed up my blood sugars with my Type 1. He was older and had been a specialist for a long time. I switched to a Nurse Practioner in the same office and she offered me so much help and stabilized things for me.


#13

This is a little off from your original post, but have you tried following a Hashimoto’s diet? For the longest time, I could not understand why my labs were normal, but I felt terrible with all of the classic hypothyroid symptoms. Now I feel so much better, and it helped with some other health issues I have that are also autoimmune related. There’s lots of info on the internet (try Mayo Clinic and Dr Andrew Weill), and there are several very good books on the topic. Anyway, it might be worth a try.


#14

I have had testosterone and various vitamins tested. I have also had quite a few tests for other things like for the muscle weakness and stuff. I am supposed to be having a heart test as well, though i really don’t think that is it.


#15

Kristy. if your doc is willing to ruin the tests again go to a different lab. i was just at a conference with an endocrinologist and he said some labs are notorious for bad thyroid results and he doesnt change treatment without at least two consistent abnormal test results because he sees so many false negatives and ositives. your insurance can dictate which lab company but not to location you can use and usually they have another labcor or quest, etc within a 30minute drive or less.

my other recommendation would be to ask “would you be willing to run … lab” this way it seems like you are asking for help instead of telling them how to do their job which doesnt go over well in my experience. you could mention a friend got thyroid disease and you are worried about it or any other excuse.
hope that helps


#16

I feel like, I am paying them, and paying for the lab work, if I want to have a test ran just freakin run the test. I shouldn’t have to beg.


#17

Yeah it is definitely frustrating. I did make sure to ask in a nice way. I can understand why they don’t necessarily want to run additional blood tests. My TSH was normal again. I definitely know they are knowledgeable and have the final decision. I am just tired of expensive tests. I think they are concerned because there has been an increase in reports of Thyroid cancer.

The funny thing is my Endo asked me if I had Hasimotos when I mentioned my swollen thyroid. I have only been seeing this doctor for a few years. Just crazy. She also brought up Antibody tests and wanting to do an Ultrasound. But then she saw my primary already ran my TSH and free T4 and they were normal. So she said I didn’t need to have Antibody tests. I guess her reasoning is that since my Thyroid shows normal levels she wouldn’t treat even if I come back with Antibodies. I told her I would definitely have the Ultrasound and stated that I just would like to see if it could be autoimmune. My energy has been low for a long time and since my neck has been swollen it’s gotten worse. I know something is going on. I’m not even concerned about her treating it or not. I just want to know why I feel like my battery is dying or something like that.


#18

I eat a pretty healthy diet. I’m not perfect though so I might try eliminating more things. I already do not eat a lot of meat or carbs. I have stomach issues too so I’m thinking about seeing a dietitian to get more ideas.


#19

It’s not about eating healthy, but about avoiding foods that might be adversely affecting your thyroid and interfering with the efficacy of your medication. Interestingly, I had stomach issues, too, and they went away after I started following the Hashimoto’s diet guidelines. Again, it may not help you at all, but I do think it’s worth looking into. Obviously you can research this yourself, but I avoid: gluten, soy, raw cruciferous vegetables, raw nuts and limit certain fruits. I try to eat more foods that are high in iodine. I am not trying to advocate anything, but it helped me and think maybe it might help you.


#20

Thanks for the information. I probably won’t be put on medication since my levels are still normal. I’m definitely willing to try to see if foods or supplements would help. The Gluten part might be a hard thing to avoid though. I saw a sign at the GI doctors office showing that Gluten is in everything. Even makeup, lotions, and toothpaste, You probably aren’t taking it that far though. I definitely could do more of the Paleo type thing with lean meat. I actually already do have food with salt. I have problems with low blood pressure so I don’t restrict salt like some people.