Upset and scared, Probably Type 1!

You are so kind to give me that information. For years, it has gone up and down along with my T3 and T4. Actually, I cant remember a time that is was in range. I’ve lived a very sick life and family around me is almost over it. I mean, I cant blame them, its been my entire life. Sick, low immunity, I catch every cold, infection, gastro issues. Once my antibodies were tested and came out high, they just move the synthroid doasge around. Once put on natural, and I was a mess. Then they tested T3 T4 and my T3 numbers was low. Another time my T4 numbers were high, and usually my TSH is high. but this last bloodwork, my T3 & T4 was normal and my TSH is 0.25. I FEEL AWFUL. I have headaches daily, sluggish, sick after I eat, dont sleep, sometimes breathe harder after physical activity. So, I thought, maybe they’re on to something. Maybe this entire time it’s been my Glucose, maybe its not 200 but at first check fasting was 107 and A1C was 5.7
They put me on Metformin, now fasting is 97 and A1C is 5.6, still on higher end. I just hate the doctors here. I’m all over the place and yes its probably because of my thyroid. But why cant soemone regulate it? I’m so tired of being sick, and now the doctor has lowered it to 85mcg, I was on 125mcg and shes taking me off metformin. Why? Allthats gonna do is bring back up my A1C! So exhausted over all of it! :frowning: I feel like I’m just becoming depressed and Just dont care anymore

Your blood g is ok- c peptide a bit low maybe but it depends on the range. I would eat a gluten free diet if I were you. I have hashimotos too and type 1, there may be a link to gluten stimulating the autoimmune reaction so hopefully you can stop it with that and by treating your hashis. I was in dka when I was diagnosed for type 1 but I had symptoms for many years on and off. Hashis wasn’t diagnosed till last June with antibody testing.

One of my symptoms btw about 15 years before high bg symptoms was hypoglycemia- I diagnosed and treated it myself with advice online to eat some carbs and protein/fat when bg went low. I had readings of 39 and 38 as my lowest. Most people with type 1 have 1 of the antibodies but a small percentage don’t. I would monitor the situation, get your own meter and do some testing yourself, but don’t freak out at this point. Don’t rely on docs to diagnose you because that is how I wound up nearly dead in the hospital with serious complications. A1C was 13% then. If I had gone to my docs with the low records and symptoms maybe they would have done testing then, and maybe I would have been diagnosed earlier if antibody testing was done. At that point I was no where near needing insulin. My theory is these diseases take many years to show up in blood work completely and with diabetes often starting as the slightly abnormal regulation of bg. Pregnancies or trying for them can often bring out diabetes too and probably thyroid disorders.

I agree with Cycling Lady not to stop gluten, if you do that, before having a test for Celiac. We have to keep in mind that tests can be flawed, you can have false pos and neg. If you see a pattern in your bg trends you can go to a doc with your records and discuss it with them. There is a better more sensitive test for celiac now which doesn’t require exposure to gluten to be correct but it’s only available in Australia currently I think.

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Honestly, some of your symptoms sound like non-diabetic hypoglycemia. I only say this because I have a few friends with the condition and they describe a lot of the mild low blood sugar symptoms that you’ve described. Non-diabetic hypoglycemia, from what I understand, is a very mild condition where you just need to make sure you eat frequent small meals - if you go without food for too long you start to get shaky, nauseous, even numb lips. I thought numb lips and mouth was strictly an insulin-induced low blood sugar symptom until my husband told me he gets that all the time when he forgets to eat - he has a genetic liver condition, which sometimes is associated with hypoglycemia since it prevents the liver from functioning properly and releasing a steady stream of glucose.

Anyway, if you’re concerned, it’s very easy to get a cheap glucose meter from the pharmacy. Test your blood sugar when you don’t feel well and see what the deal is. Why not? If it’s a low number, bring it up with your endo.

I’m not very familiar with thyroid issues; all I know is type 1 diabetes, and your blood work does not seem to represent that diagnosis at all. For reference, my a1c was 10 when diagnosed and in DKA.

As a side note, I’m sorry that your endo felt it was a good idea to say “I betcha have type 1” and then send you on your merry way. That’s not cool. :unamused:

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I have had Hashi’s for almost 20 years. Mine became unstable when I went through Perimenopause. I had a lot of wild swings going from hyper to hypo. Turns out I had celiac disease. Anemia was my only symptom – no gut issues that I noticed. TD1, celiac disease and autoimmune thyroiditis is strongly linked. Once my gut healed, I hit menopause and my thyroid calmed down. Just something to think about.

Please ask for the celiac blood test before you even consider going gluten free. I know gluten free helps many with thyroid issues, but ruling out celiac disease with a simple blood test is best.

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Yes, thats how I feel. But sometimes after I eat I feel a little nauseous, which just goes back to all of my gut issues. I do however have to eat small frequent meals or I get shaky, lightheaded.

Thank you for sharing your story, it’s really helpful to hear others stories and know I’m not alone but also compare symptoms. My doctor has lowered my synthroid, which i’ll start tomorrow. From 125 to 80mcg. She says to come off of metformin and see in 5 weeks what happens. I’m nervous to go off my metformin because I feel like its kept me at least at a lower 90’s glucose and a decent A1C. But if I dont have diabetes type 1, its just hard to understand how, when I dont eat badly, dont eat meat, work out and I’ve always been thin, how my numbers would be on the higher side without having diabetes. Unless my thyroid could really mess these numbers up. I feel strongly that I’m on that path :frowning:

There is such a thing as non-diabetic hypoglycemia, for sure. We’re conditioned to think about the opposite problem so it’s easy to overlook. But it’s quite real. Worth checking, if only to eliminate.

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I developed Type 1 diabetes as a kid, and then developed Graves’ disease more than two decades later. Since my thyroid has gone out of whack it’s had a huge impact on my diabetes control. It would probably have an impact even in someone without diabetes. I would try and get your thyroid stable and see if that improves things.

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