Anyone experience lip / throat or other skin swelling?

Coping & Support
1

Hello!

I’ve had T1D since I was 11, and was diagnosed with autoimmune hypothyroidism in my teens. As a teen I would randomly experience huge lip swelling, and it sometimes also made my throat swell so I’d wheeze. It never interfered with my breathing. It has recurred intermittently over the years (I’m now in my late 30s), with several occurrences this year and one bad one last week for which I went to the ER.

An allergist in my teen years had no idea what the cause was, and guessed that I was having a “chemical reaction to salicylates in food” and gave me a list of things to avoid, which I adhered to for about five minutes and moved on with my life.

I recently found a study linking “idiopathic angioedema” with autoimmune hypothyroidism. Do any of you who also have autoimmune hypothyroidism also experience lip, throat, and/or other skin swelling with no other apparent cause?

Thank you,
Shannon

2

Shannon,

My son was diagnosed with T1D about 5 years ago when he was 13, at around the same time my wife and my son were diagnosed with Hereditary Angioedema. HAE is pretty rare but does have the symptoms that you are talking about with the lip, throat and skin swelling. My son has not been symptomatic yet, but my wife started having symptoms after the birth of our oldest child.

The doctors said my son could go his whole life with out becoming symptomatic, but they are lots of things that can trigger HAE, so we don’t know when or if he would ever have any symptoms. I don’t know if any of this information will help or answer the questions you had, but I found the similarities interesting.

Thank,
Jerry