Thyroid test is normal but I have all the symptoms?

[sunbun]

As far as I know I’ve had my thyroid levels checked many times at the ER. I’m not sure if they test all TSH, T3 and T4 and free T3 and 4, so I’m going to ask my dr today.

But what’s weird is I have all the symptoms of a thyroid disorder. Swelling under neck area, problems with weight (either gaining or losing it way too easily) as an adult my eyes have become more protruding and bulgey and buggy (in fact I was looking through my old pictures as a young teen and noticed how much less buggy my eyes were back then, I have a lot more upper eyelid exposure now and my eyes are much rounder and they seem to bulge a lot under the lid to the point you can see it from the side, up until I was about 16 I always had hooded eyes with hardly any eyelid show, and now they just seem to be getting bulgier and bulgier, I get a lot of pressure too and sometimes feel like they’re going to pop out of my skull lol)

I have zero energy, very slow or very fast digestion, dry skin but also sweat a lot and am always either freezing or boiling hot, dry brittle hair which keeps getting dryer as I get older. I also have outer third eyebrow hair loss, as well as blood sugar crashes and insulin resistance despite a healthy low carb diet. I also have these kind of adrenal crises where my blood pressure and heart rate will go through the roof and I become extremely agitated and overheated and feel like I’m going to collapse, but it always gets blamed on on anxiety or hyperadrenergic pots.

Like I said I look pretty thyroid-y so the dr looked at me she immediately suspected thyroid and was surprised when it didn’t show anything. My dad’s side of the family all struggle with thyroid disorders too. I feel like it’s hard to differentiate pots symptoms from something like thyroid disorder. I keep reading that these tests are very sensitive but are there any way they could have missed it on the blood panels? Are there any further checks I can get to rule this out? 

[JaneEyre9]

I was recently diagnosed with Graves' disease, and my doctor also did not think I had it based on initial tests.

The key tests to help identify thyroid dysfunction are fT3 and fT4, along with thyroid antibodies - TPO, TSI, TrAB. If your fT3 is even at the very top (or bottom) of the "normal" range, it's enough to cause symptoms. I feel best when my fT3 is in the top quarter of normal but not at the very top.

A thyroid ultrasound may also be something your doctor would consider.

You may also want to get evaluated by an eye doctor for thyroid eye disease based on your symptoms.

In the meantime, I've found a lot of helpful background information from a doctor named Eric Osansky (who has a podcast, writes articles, and runs seminars online). He specializes in natural ways to heal from thyroid conditions, but the root cause he says is the autoimmune disease itself. The 3-legged stool for autoimmune disease requires genetic predisposition, a trigger (like infection, gluten, stress, etc), and intestinal permeability (aka leaky gut). He says if you can remove the trigger and heal the gut lining, you can overcome thyroid disease, and he personally has done it himself. Hope this information helps!! My endocrinologist is shocked by how quickly I've improved, so I think there is a lot to this approach. You have my empathy - this is a tough set of symptoms to deal with.

[sunbun]

15 hours ago, JaneEyre9 said:

I was recently diagnosed with Graves' disease, and my doctor also did not think I had it based on initial tests.

The key tests to help identify thyroid dysfunction are fT3 and fT4, along with thyroid antibodies - TPO, TSI, TrAB. If your fT3 is even at the very top (or bottom) of the "normal" range, it's enough to cause symptoms. I feel best when my fT3 is in the top quarter of normal but not at the very top.

A thyroid ultrasound may also be something your doctor would consider.

You may also want to get evaluated by an eye doctor for thyroid eye disease based on your symptoms.

In the meantime, I've found a lot of helpful background information from a doctor named Eric Osansky (who has a podcast, writes articles, and runs seminars online). He specializes in natural ways to heal from thyroid conditions, but the root cause he says is the autoimmune disease itself. The 3-legged stool for autoimmune disease requires genetic predisposition, a trigger (like infection, gluten, stress, etc), and intestinal permeability (aka leaky gut). He says if you can remove the trigger and heal the gut lining, you can overcome thyroid disease, and he personally has done it himself. Hope this information helps!! My endocrinologist is shocked by how quickly I've improved, so I think there is a lot to this approach. You have my empathy - this is a tough set of symptoms to deal with.

I’m so sorry to hear about your diagnosis but also happy you finally found out what was causing your symptoms. Thank you so much for all the useful information you’ve given, I never knew there were so many other facets to investigating thyroid disorders. I’ve also heard about the gut thyroid connection! It’s amazing how our microbiome influences so much. I’m definitely going to ask my GP for more thorough thyroid testing. Take care.