tongue swelling with scalloping sides

[pattycakeis]

I have been dealing with tongue swelling with scalloping sides for over 2 years, seeing various Drs.. without any answer,  I take Allegra, Predisone, Benedryl, and I carry epi-pens. what ever it takes to relieve the swelling...
I have had all blood labs done numerous times, by my Endocrinologist, Allergist, Autoimmune, and primary Dr.
I have so many medial bills with no answers or resolution....and  I am frustrated...HELP!!  
I Stumble across this web site about Hypothyroid that has symptoms oft tongue swelling...
What should my Dr. Look for??

[gimel]

As I expected your Free T3 is very low in the range, consistent with having hypo symptoms for many people.  Your Free T4 is also below the middle of its range.  Along with your TSH result, and the negative TPO ab result, it seems to indicate central hypothyroidism as the cause for your thyroid hormone levels being low enough  to cause hypo symptoms.  With central hypothyroidism the hypothalamus/pituitary system does not produce enough TSH to adequately stimulate the thyroid gland to produce thyroid hormone.

You are going to have to get your doctor to prescribe a trial of thyroid medication.  I suggest that with your low Free T3 level it would be good to use an NDT type, like Armour Thyroid med to get both T4 and T3 in your med.  

For your tests today, I also suggest getting Vitamin D and selenium done, if at all possible.  In addition to asking your doctor for thyroid meds, you also need to ask about what is causing the high ferritin level.  

[pattycakeis]

These are my test results

TSH REFLEX                                      0.450 - 4.500 uIU/mL                2.390
THYROID PEROXIDASE (TPO) AB             <=35 IU/mL                       9      
T4 FREE                                                          0.82 - 1.77 ng/dL          1.11
T3 FREE                                                          2.0 - 4.4 pg/mL               2.5
IRON                                                                37 - 145 ug/dL                121
TOTAL IRON BINDING CAPACITY                228 - 428 ug/dL              406
% IRON SATURATION                                      15 - 50 %                       30
UNSATURATED IRON BIND CAPACITY        112 - 347 ug/dL              285
FERRITIN                                                     13.0 - 150.0 ng/mL          304.2

Going today for B12 & B6 testing

[gimel]

Just because the thyroid tests were within the so-called "normal" range does not mean they are adequate.  Please post results and their reference ranges shown on the lab report.  Regarding the ferritin, your doctor is going to have to find out what is causing it to be so high and then determine action to be taken.  If you want to do some reading about the ferritin test, this is a good site.

http://labtestsonline.org/understanding/analytes/ferritin/tab/test

[pattycakeis]

All Thyroid came back in the normal range...

But the FERRITIN range should be 13.0 - 150.0 ng/mL ....and mine was high @   304.2 ..What should I do and who should I go see about it?

[Red_Star]

I am covered from head to foot with myxedema (abnormal deposits of glycosaminoglycans in the skin and other tissues). The only notable improvements so far is my tongue is mildly decreased in size, I can pinch skin on my lower arms, and my skin isn't stretched so tightly either in certain areas.  If you want to check out a skin test video demo, search: Hypothyroidism Type 2: Myxedema Symptoms.

From the Stanford School Of Medicine article Macroglossia - Differential Diagnosis...

Pseudomacroglossia – secondary to condition which forces the tongue to sit in an abnormal position, making it look enlarged.
-  Enlarged tonsils/adenoids
-  Low palate
-  Abnormalities in maxillary or mandibular arches
-  Oral cavity neoplasms causing tongue displacement

True Macroglossia
1) Congenital – i.e. Down Syndrome, Beckwith-Widemann Syndrome, Mucopolysaccharidoses, and many more

2) Acquired
- Hypothyroidism – due to accumulation of matrix glycosaminoglycans
- Acromegaly
- Infiltrative disease – AL Amyloidosis, Sarcoidosis
- Neoplasms of the tongue – Carcinoma, Plasmacytoma, Hemangioma, Lymphangioma
- Trauma – Surgery, biting, intubation injury, radiation therapy
- Infection – Ludwig Angina, Candidiasis, more
- Vitamin Deficiencies – e.g. Pellagra (B3 niacin deficiency), B12 deficiency, others"

From Medicine Net - Swollen Tongue...

"Swelling of the tongue can occur due to inflammation of the tongue (known as glossitis), the presence of abnormal substances (such as amyloid protein) in the tongue, the collection of fluid in the tongue as a result of different disease processes, or tumors that infiltrate the tissues of the tongue.

An enlarged tongue can also occur as an allergic reaction to medications or other substances. In this case, the swelling is due to fluid accumulation in the tissues of the tongue, medically known as angioedema. A dramatically swollen tongue can lead to breathing problems and may be a medical emergency. Treatment of allergic reactions that include swollen tongue can include epinephrine, antihistamines, and/or steroid medications."

[gimel]

Hashi's can show up in either the  TPO ab or TG ab test.  Best to run both the first time.  Other than that, you have the right orders for tests.  Make sure the lab people know Free T3 and Free T4.

[VitaminB12]

I wish you well with the testing.

I suppose my tongue is likely swollen somewhat for the edges to be scalloped, but thankfully it doesn't affect my speech or eating.

Is your skin dry, are you anxious,and often feel cold, and have insomnia? These are a few of the symptoms of hypothyroidism that I am currently experiencing.

[pattycakeis]

Here is the correct order my Dr. put in

I have put in orders for TSH, free t4, free T3 and TPO Ab.

Also I have asked her to add ferritin, serum iron, TIBC, and % saturation testing to be done as well .

Thank You for referring me to the video....I have watched that many times.
Pattie

[VitaminB12]

Thank you for your reply and the informative video.

[gimel]

sent PM with into.

[VitaminB12]

Thank you for your posts everyone. I wondered why my tongue was scalloped. Thankfully mine isn't swollen. That must be uncomfortable! I thought the scalloped tongue was related to the fact that I clench and grind my teeth. I wear a custom-made night guard. Please note I would be interested in the link to tongue conditions, too.

I have hypothyroidism and I'm a vegetarian. Previously I had a B12 deficiency, but I am take a supplement and my level is OK now. I hope my doctor will test my adrenals and a few other things before we discuss treatment options as I've read online if you have problems with your adrenals you shouldn't take Synthroid or Levothyroxine.

[gimel]

It makes me nervous when you say T3.  It has to be Free T3 not Total T3.  If the doctor just orders T3, it will come out as Total T3, which is not nearly as useful as Free T3.  I would even go so far as to confirm with the lab person drawing your blood that she knows it is to be Free T3.  You would be surprised to know how often they operate on auto pilot and do the usual tests, which don't include Free T3.  

I have an interesting link that shows some tongue conditions that you may relate to.  I cannot post here on the main Forum because it includes solicitation for a book.  I am sending a PM with link.  Just click on your name and go to personal page, then click on messages.  If you want to skip much of the video, click on the time line and move the cursor to the 13:35 mark.  

[pattycakeis]

My endocrinologist has ordered T3 and Free T4, along with TSH to be done next week.  
I have also requested  ferritin, serum iron, TIBC, and % saturation testing to be done as well .
Thank You so much for your input. I hope to find resolution soon....It's been over 2 1/2 years with lots of medical bills and no correct solution,,

Patty

[pattycakeis]

I have been taking B-12, Biotin & Hair Skin & nails for my hair loss for a very log time.....?For my hair loss...
So you are saying B12 is causing this?

[Red_Star]

I've had an enlarged tongue with scalloping for decades. My two reasons - vitamin B12 malabsorption (this also causes atrophic glossitis) and hypothyroidism.  I've been on thyroxine for almost 2 years now and my tongue is still enlarged with scalloping but there is a mild improvement.

[gimel]

If you have had thyroid related tests done, please post results and their reference ranges shown on the lab report.  If not, you should test for thyroid antibodies related to Hashimoto's Thyroiditis.  Those tests are Thyroid Peroxidase and Thyroglobulin antibodies.  Usually listed as TPO ab and TG ab.  You need to do both.  Also, you should test for the biologically active thyroid hormones, Free T3 and Free T4, along with TSH.  If your problem is thyroid related, expect that your Free T3 and Free T4 will be in the lower part of their ranges.

Other possibilities include anemia. " A variety of nutrients play essential roles in the formation of red blood cells, including vitamin B-12, vitamin B-6, folate and iron. Iron deficiency anemia, the most common type of anemia, affects as much as 30 percent of the world's population, notes the National Institutes of Health Office of Dietary Supplements."

So if you haven't been tested for those, it would be a good idea to do so.  For the iron tests, I suggest ferritin, serum iron, TIBC, and % saturation.