Swollen Tongue no one knows why

We are in the exact same boat! Have you been tested for vitamin deficiencies or thyroid problems?
I reviewed my past thyroid labs and they are all over the place, I have a lot of the symptoms of hypothyroidism, I will be seeing my doc again to further test them rather than just the TSH.
What also makes me think it is not an allergy is that when I take Benadryl there is no relief.

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Several thoughts (which I will preface with the statement that I am NOT a medical professional, just a poor unfortunate soul who's done a lot of research trying to figure out what's wrong with her):

1. If you have not already, have your Vitamin B12 checked; a sore, swollen, "beefy red" (boy was that weird to read in my office visit notes) and/or smooth tongue is characteristic of a B12 deficiency. The ridges/ripples/scallops/waves along the edges are typical signs of a swollen tongue, regardless of cause ( @johannahansen and @sbouchard77 ). Wearing a mouth guard, even if just for one night to assess if it's a teeth grinding problem, should "clear out" the ridges temporarily. Someone mentioned a "borderline low" B12 deficiency; I would advise him or her to check their actual lab results, as often there will be a level that, while not flagged low/deficient, comes with a disclaimer that some people within that level will still show symptoms of deficiency that should warrant considering treatment. Of particular importance to note is the frequent mention of proton-pump inhibitors (PPIs) including Pantoprazole/Protonix and Omeprazole/Prilosec and to a slightly lesser extent H2 blockers including Famotidine/Pepcid and Ranitidine/Zantac can prevent absorption of vitamins (B12 in particular) with long-term use and are associated with increased risk of B12 deficiency.

2. My immediate reaction when reading a lot of these posts was "Mastocytosis and/or Mast Cell Activation Disorder." These cause allergic reactions, often unpredictable and from varying and often changing triggers, that can be as severe as an anaphylactic reaction like we normally associate with bee stings (lip/tongue/throat swelling, hives, itching, etc.). These are most frequently treated by allergists/immunologists (like most of you were) and are typically treated with a regimen of the drugs you received: H1 antihistamines (Claritin/Loratidine, Zyrtec, etc.); H2 antihistamines (Famotidine/Pepcid, Ranitidine/Zantac, etc.); Leukotriene Inhibitors (Singulair/Montelukast, etc.) and when GERD continues to be problematic, a PPI (Omeprazole/Prilosec, Pantoprazole/Protonix, etc.). Mastocytosis is fairly well-known, so I suspect you would have likely been tested for that by any competent allergist/immunologist (usually involves a consistently elevated tryptase level), but Mast Cell Activation Syndromes are a more "recent" discovery/definition and may not be as widely known. Check out https://tmsforacure.org/overview/ for a wealth of information on both mastocytosis and mast cell activation syndromes.

3. In terms of general allergies, if you have not already, ask about having your Total IgE - if your level is normal, it's unlikely (although not impossible) that allergies are playing a role; learn more at https://labtestsonline.org/tests/total-ige. You can also have Allergen-specific IgE levels tested if there's something you specifically suspect is causing your symptoms (ex., the question about dog dander or food allergies); see https://labtestsonline.org/tests/allergy-blood-testing.

4. Finally, as more of a long-shot, I wanted to mention the recent discovery of meat allergies resulting from tick bites. @jerryd 's mention of moving to a lakefront location with lots of open fields reminded me of an article I read recently about it. If I recall correctly, it's more frequently associated with men and there's a delayed reaction between ingestion and symptoms. OH, I just found this article -- Jerry, tell me this doesn't sound like you?: "If you start to have trouble breathing in the middle of the night, you probably are not going to blame the hamburger you had for dinner." https://labtestsonline.org/news/meat-allergy-tick-bites-most-common-cause-anaphylaxis-clinic

Good luck folks! Hope you find some relief/answers.

Jump to this post

Several thoughts (which I will preface with the statement that I am NOT a medical professional, just a poor unfortunate soul who's done a lot of research trying to figure out what's wrong with her):

1. If you have not already, have your Vitamin B12 checked; a sore, swollen, "beefy red" (boy was that weird to read in my office visit notes) and/or smooth tongue is characteristic of a B12 deficiency. The ridges/ripples/scallops/waves along the edges are typical signs of a swollen tongue, regardless of cause ( @johannahansen and @sbouchard77 ). Wearing a mouth guard, even if just for one night to assess if it's a teeth grinding problem, should "clear out" the ridges temporarily. Someone mentioned a "borderline low" B12 deficiency; I would advise him or her to check their actual lab results, as often there will be a level that, while not flagged low/deficient, comes with a disclaimer that some people within that level will still show symptoms of deficiency that should warrant considering treatment. Of particular importance to note is the frequent mention of proton-pump inhibitors (PPIs) including Pantoprazole/Protonix and Omeprazole/Prilosec and to a slightly lesser extent H2 blockers including Famotidine/Pepcid and Ranitidine/Zantac can prevent absorption of vitamins (B12 in particular) with long-term use and are associated with increased risk of B12 deficiency.

2. My immediate reaction when reading a lot of these posts was "Mastocytosis and/or Mast Cell Activation Disorder." These cause allergic reactions, often unpredictable and from varying and often changing triggers, that can be as severe as an anaphylactic reaction like we normally associate with bee stings (lip/tongue/throat swelling, hives, itching, etc.). These are most frequently treated by allergists/immunologists (like most of you were) and are typically treated with a regimen of the drugs you received: H1 antihistamines (Claritin/Loratidine, Zyrtec, etc.); H2 antihistamines (Famotidine/Pepcid, Ranitidine/Zantac, etc.); Leukotriene Inhibitors (Singulair/Montelukast, etc.) and when GERD continues to be problematic, a PPI (Omeprazole/Prilosec, Pantoprazole/Protonix, etc.). Mastocytosis is fairly well-known, so I suspect you would have likely been tested for that by any competent allergist/immunologist (usually involves a consistently elevated tryptase level), but Mast Cell Activation Syndromes are a more "recent" discovery/definition and may not be as widely known. Check out https://tmsforacure.org/overview/ for a wealth of information on both mastocytosis and mast cell activation syndromes.

3. In terms of general allergies, if you have not already, ask about having your Total IgE - if your level is normal, it's unlikely (although not impossible) that allergies are playing a role; learn more at https://labtestsonline.org/tests/total-ige. You can also have Allergen-specific IgE levels tested if there's something you specifically suspect is causing your symptoms (ex., the question about dog dander or food allergies); see https://labtestsonline.org/tests/allergy-blood-testing.

4. Finally, as more of a long-shot, I wanted to mention the recent discovery of meat allergies resulting from tick bites. @jerryd 's mention of moving to a lakefront location with lots of open fields reminded me of an article I read recently about it. If I recall correctly, it's more frequently associated with men and there's a delayed reaction between ingestion and symptoms. OH, I just found this article -- Jerry, tell me this doesn't sound like you?: "If you start to have trouble breathing in the middle of the night, you probably are not going to blame the hamburger you had for dinner." https://labtestsonline.org/news/meat-allergy-tick-bites-most-common-cause-anaphylaxis-clinic

Good luck folks! Hope you find some relief/answers.

Jump to this post

Several thoughts (which I will preface with the statement that I am NOT a medical professional, just a poor unfortunate soul who's done a lot of research trying to figure out what's wrong with her):

1. If you have not already, have your Vitamin B12 checked; a sore, swollen, "beefy red" (boy was that weird to read in my office visit notes) and/or smooth tongue is characteristic of a B12 deficiency. The ridges/ripples/scallops/waves along the edges are typical signs of a swollen tongue, regardless of cause ( @johannahansen and @sbouchard77 ). Wearing a mouth guard, even if just for one night to assess if it's a teeth grinding problem, should "clear out" the ridges temporarily. Someone mentioned a "borderline low" B12 deficiency; I would advise him or her to check their actual lab results, as often there will be a level that, while not flagged low/deficient, comes with a disclaimer that some people within that level will still show symptoms of deficiency that should warrant considering treatment. Of particular importance to note is the frequent mention of proton-pump inhibitors (PPIs) including Pantoprazole/Protonix and Omeprazole/Prilosec and to a slightly lesser extent H2 blockers including Famotidine/Pepcid and Ranitidine/Zantac can prevent absorption of vitamins (B12 in particular) with long-term use and are associated with increased risk of B12 deficiency.

2. My immediate reaction when reading a lot of these posts was "Mastocytosis and/or Mast Cell Activation Disorder." These cause allergic reactions, often unpredictable and from varying and often changing triggers, that can be as severe as an anaphylactic reaction like we normally associate with bee stings (lip/tongue/throat swelling, hives, itching, etc.). These are most frequently treated by allergists/immunologists (like most of you were) and are typically treated with a regimen of the drugs you received: H1 antihistamines (Claritin/Loratidine, Zyrtec, etc.); H2 antihistamines (Famotidine/Pepcid, Ranitidine/Zantac, etc.); Leukotriene Inhibitors (Singulair/Montelukast, etc.) and when GERD continues to be problematic, a PPI (Omeprazole/Prilosec, Pantoprazole/Protonix, etc.). Mastocytosis is fairly well-known, so I suspect you would have likely been tested for that by any competent allergist/immunologist (usually involves a consistently elevated tryptase level), but Mast Cell Activation Syndromes are a more "recent" discovery/definition and may not be as widely known. Check out https://tmsforacure.org/overview/ for a wealth of information on both mastocytosis and mast cell activation syndromes.

3. In terms of general allergies, if you have not already, ask about having your Total IgE - if your level is normal, it's unlikely (although not impossible) that allergies are playing a role; learn more at https://labtestsonline.org/tests/total-ige. You can also have Allergen-specific IgE levels tested if there's something you specifically suspect is causing your symptoms (ex., the question about dog dander or food allergies); see https://labtestsonline.org/tests/allergy-blood-testing.

4. Finally, as more of a long-shot, I wanted to mention the recent discovery of meat allergies resulting from tick bites. @jerryd 's mention of moving to a lakefront location with lots of open fields reminded me of an article I read recently about it. If I recall correctly, it's more frequently associated with men and there's a delayed reaction between ingestion and symptoms. OH, I just found this article -- Jerry, tell me this doesn't sound like you?: "If you start to have trouble breathing in the middle of the night, you probably are not going to blame the hamburger you had for dinner." https://labtestsonline.org/news/meat-allergy-tick-bites-most-common-cause-anaphylaxis-clinic

Good luck folks! Hope you find some relief/answers.

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I've had persistent and recurrent angioedema since December 2021 (officially) but possibly back to June 2021 when my PCP started me on Lipitor. Since December the Angioedema has been present 100% of the time but maybe 70% of the time it's been intolerable. In retrospect we now know a lot of the issues I was having were due to a statin reaction. In December the Angioedema onset was over a few hours. Prior to that I didn't notice the swelling but looking back at pictures of me from the previous 6 months you can see the swelling was slowly growing. I was complaining of swollen/numb upper lip and my teeth hurt... all of them. It felt like they were free floating in head. Prednisone would help bring down the inflammation to a less painful level but never completely resolves it. We finally identified the Lipitor reaction as my kidney labs showed I was in failure (GFR - 14) and I developed Rhabdomyolysis. I was a train wreck. I still am.. The Rhabdo causes extreme muscle pain and will take 3-4 months post stopping the drug to hopefully completely resolve. From what I'm reading Angioedema can be drug induced and Statins is one of the drugs (along with NSAIDS, Ace inhibitors and a few others) and can continue to pop up after you discontinue the med. So I may have to sit in my bed for another 2 months to see if both the Rhabdo and the Angioedema resolve.

My Allergist tested C4 to rule out hereditary but other than that they have almost ignored it so once again I'm doing the research to figure out if the type of Angioedema can be identified and possible treatment options.
I put links to 2 good publications below.
There are multiple sub-types of Angioedema and some can be ruled out easily to narrow down etiology and treatment. I'm summarizing what I've read in these 2 links as well as multiple studies. I'm not a physician, but I am a nurse so I can sift through the medical terms easier. Even then, I still find Immunology hard to absorb.

Hereditary angioedema - Can be diagnosed with C4 and C1 inhibitor lab tests

Acute allergic angioedema - Usually presents WITH a rash or hives steroids and antihistamines will significantly improve.

Non-allergic drug reaction - Presents WITHOUT hives. Can be induced and Statins , NSAIDS, Ace inhibitors and a few others. Prednisone helps some with inflammation initially but does not resolve. We think this is what I have but I'm also on Xolair which suppresses hives and is working well. The diagnosis follows the Hereditary angioedema pathway except C4 is normal and C1 is abnormal. This is where my Allergist missed. He ordered the C4 but not the C1.

Acquired C1 inhibitor deficiency. - Like Drug Induced without the drug catalyst

Idiopathic angioedema - The left over bucket they cant figure out

Vibratory angioedema - Caused by repetitive vibrations like riding a motorcycle or using power tools that work with vibration.

Of thge 10,000 papers, studies and articles I've read, these 2 gave me a few tools to narrow down what the cause might be. Then maybe a treatment plan can evolve. I hope it helps you.

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My tongue gets swollen at times too, I bite my cheeks, my own tongue. So sorry you have this going on, I feel you frustration, hope there is an answer for you.

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