How come that your face is swollen when you have hashimoto's disease?

[jeffbursens]

Dear Hashimoto-survivors,

I'm asking myself this question for a long time but couldn't figure this out yet.
How come that your face/cheeks/eyes/hands is swollen/puffy when you have hashimoto's disease?
I'm sure it has something to do with to overall functions/metabolism of the patient and the fact that everything is
slowing down but there must be a better explanation...

Thank you so much in advance and I'm looking forward to your replies,
Jeffrey Bursens (a hashimoto victim since severall months)

[Red_Star]

Excerpt from Outsmart Disease: A Little-Known Factor That Contributes To Weight Gain...

"Two types of water retention in hypothyroidism:

"1. Myxedema is when the fluids and waste products build up over time and don’t clear out of the body due to hypothyroidism. They accumulate in the tissues and don’t respond to diuretics. Only adequate treatment of low thyroid function can resolve this issue.

2. Low thyroid can reduce kidney function when blood filtration and fluid balance become impaired. An example of this effect is puffiness of the face, especially around the eyes, in the hands and ankles. This type of edema is reversible after low thyroid is treated and can also respond to diuretics."

[jeffbursens]

Dear Red Star,

This is a perfect answer. This is exactly what I needed to know.
I was pretty sure there are two kinds but sometimes you need someone
else to say the things you already knew to be sure. Off course I hope I don't
have Myxedema but the low kidney function as it's better to cure.
How can I know 100% which kind of water retention I have?
I've tried Furosemide and sometimes it works fine but sometimes I doesn't.
How can I make sure it's not Myxedema ?

Thank you so much for your answer that made my day.

[Red_Star]

No problem. :)

You can tell if you have myxedema if you cannot pinch your skin between your fingers.  There is a demo on youtube: Hypothyroidism Type 2: Myxedema Symptoms.  

[thomthod]

Whew I checked and I can PINCH!

Not only my face but my under the eyes is really puffy!   I hate it.  I will get inot remission one way or another!

[Barb135]

Most likely you will get into remission when the antibodies have destroyed all healthy thyroid tissue and your thyroid no longer produces any hormones.  That's what happens to most of us.

[jeffbursens]

Dear,

So what you're saying is that once the thyroid is completely destroyed, things should become better?

Thank you!

[Barb135]

Once all the healthy thyroid tissue has been destroyed, by the antibodies, your own thyroid won't produce any hormones anymore, so you'll be completely reliant on your hormone replacement.  As long as your med is adjusted properly, for you, symptoms should go away.

By the same token, once there is no more healthy thyroid tissue to destroy, the antibodies should go into remission, since they only attack the thyroid and don't move on to other organs.

What med/dosage are you on?  How long have you been on it?  The swelling/puffiness could indicate that you need a med adjustment.  

Do you have labs that you could post so we can better assess your situation?  Be sure to include reference ranges with any labs, since ranges vary lab to lab and have to come from your own report.

[jeffbursens]

I'm on 75 mg Elthyrone (belgian Levothyroxine) a day since 6 february (almost two months).

Free T4: 1,36 ng/dl Ranges: 0,70 - 1,48
Free T3: 2,90 pg/ml Ranges: 1,71 - 3,71
TSH: 1,09 mU/L Ranges: 0,34 - 4,94
Anti-TPO: H 122,36 kU/L Ranges: 0,00 - 5,61
Anti-TG: H 92,72 kU/L Ranges: 0,00 - 4,11

I'm from belgium so I hope the terms are the same so you can understand...
I could mail my whole results sheet to you if needed.
Thank you so much!

[Barb135]

Yes, I understand the terms on your report; they are the same as we use here in the U.S, except we use a period instead of a coma (example: 1.36 vs your 1,36 - means the same thing.  Levothyroxine is dosed in mcg, in the U.S., isn't it the same in Belgium?  It is in other countries.

Rule of thumb is for FT4 to be about mid range; yours is at 84%, which means that it's higher than most of us need to have it.  Rule of thumb for FT3 is 50+% of its range.  Your level is at 59%.   FT3 should be higher in its range than FT4.

Since you still have the puffiness in your face/around your eyes, that indicates that you still have symptoms of being hypo.  

Do you have T3 medication available in your country?  Here we have a synthetic T3 called cytomel.  This also comes in a generic form.  We also have desiccated hormones that contain T3, as well; do you have those available in your country?

It looks like you might not be converting the Free T4 to Free T3 adequately, but since you've only been on the med for less than 2 months, it's really hard to say for sure, since FT3 often lags behind FT4, especially, when taking a T4-only med.  It takes 4-6 weeks for the med to reach full potential in your blood, then your body has to have time time to "get well".  After all, hypothyroidism is an illness and it does strange things to your body, so you have to give your body time to readjust to having the hormones, it's been doing without.

Both of your antibody tests are over range, which would confirm Hashimoto's Thyroiditis, which is autoimmune and means that the antibodies will eventually destroy your thyroid, so it will no longer produce hormones on its own.  

Once your hormone levels are adjusted to what your body needs, symptoms should go away.

[Bree1311]

Hello Everyone,

I am so glad to have found this wonderful blog where we can find support and answers to our concerns.  I have just recently been diagnosed with hypothyroidism.   My doctor only first took routine blood work (CBC etc )and a TSH test to rule out any thyroid issues,

During January  I had been under severe emotional stress due to my mother's health issues ( she was hospitalized for generalized weakness, and then began having non-convulsive seizures etc)  I was feeling extra anxious and experiencing palpitations. ...and of course I was exhausted, but I believe that to be due to circumstances....I really had no other symptoms.   Although in retrospect, my eyebrows are very thin and there has been hair loss , but I thought that to be due to menopause.  When the results came back, they were as shown below ( TSH) .  

Yet I had researched the topic on my own to discover that several more tests are needed to be done to properly address my thyroid  issue. And so when I went back to see her this month, (March) I asked that she do a T 3 Free and T 4  and also a thyroid anti-body study.  The results are as shown below which confirmed that I have Hashimoto's. It is  also my understanding that Dr's too often do not take proper the tests to and this goes undiagnosed, while also being the major cause for hypothyroidism. I refused to fall into that category, especially if this is an immune disorder, then I want to know  how best to handle my situation, diet etc.


TSH     10.24   ( blood work from January results)

T3Free 3.1  ( this and all below from March blood work)

T4AML      7.6

Anti-Microsomal (TPO) Ab            2048

Anti-Thyroglobulin Ab                     20

I have been feeling overwhelmed with the scope of this course, and am trying not to obsess about my health, albeit , it is been a struggle..until now when I discovered this blog.  My anxiety levels have been difficult to handle , yet I am wondering how much of that has to do with just being anxious about my current health situation.  

My symptoms:  feeling cold, tired, some depression, hair loss, and palpitations which I have read in other forums to also be a culprit in low thyroid function. My 2 daughters are also being treated for   hypothyroidism, for several years now.  One takes Levothyroxine. the other Synthroid with great success.

I just began my meds on March 18th,  Levothyroxine 0.05 mg.  In June I see my doctor again and she will do blood work to adjust, but has only ordered TSH and not Free T3 & Free T4 which I understand from you Barb is the proper way to adjust thyroid levels with medication.


Diet is the key to health and must be addressed in any issue. I have also read intriguing articles on anti-inflammatory diets from Dr Weil's perspective,  and also the link below, what is your perspective?

http://www.genesmart.com/pages/natural_anti_inflammatory_foods/6.php

I would greatly appreciate any advice you or any others here have to offer.   I feel a sense of relief just knowing this place exists and look forward to hearing from you.

Bree

[Bree1311]

Forgive me, I failed to give the reference ranges from my lab . Hope this clarifies things.


Anti-Thyroglobulin Ab <=40 IU/mL <20

Anti-Microsomal (TPO) Ab <=34 IU/mL 2048

T4 AML 4.5 - 12.0 mcg/dL 7.6

T3 Free 2.3 - 4.2 pg/mL 3.1

TSH        0.34 - 5.60 uIU/mL 10.24

[Barb135]

You're right that you need both Free T3 and Free T4 to keep tabs on thyroid hormone levels - not just TSH... Your doctor will keep you ill if she tries to control your thyroid levels, based on TSH.

I totally agree that your diagnosis would be Hashimoto's as the cause for your hypothyroidism.

In order to not highjack jeffbursons thread, it would be best if you could post you information into a new thread of your own. This would allow us to keep your results separate from Jeff's.  

You can start a new thread by clicking the orange "Post a Question" button at the top of this page, type your comments/information, then click the green "Post a Comment" button below your comments.

[jeffbursens]

Dear Barb135,

It is indeed the same as in the U.S. mcg not mg.
So I'm trying to learn step by step and to not rush by important details.
My doctor is not an endocrinologist. It's my house doctor so I guess it would
be better to change to a thyroid specialist. Anyway, my FT4 is higher then mid-range. Is this something that needs to change or is this not the reason I'm still hypo? So if I understand correctly FT3 has to be higher then FT4 and that's not the case with me.

I'm sure T3 medication is possible in Belgium. Even desiccated hormones that contain T3 are obtainable.

Are you suggesting I should demand T3 medication or maybe just wait a little longer?

Thanks Barb135 for your concern, information and loyalty

[Red_Star]

I'm covered from head to foot in myxedema and my nose and lips thickened as well. After 2 years on thyroxine I can now pinch my lower arms and just the start of my upper arms, my lips are back to normal, my nose has improved, tongue is still enlarged but some improvement.

[jeffbursens]

This is also a question for Barb135,

Dear,

Is there anything else I can do to resolve the myxedema?
Coricosterïods creme maybe ? Will I be fine in the end?
Is myxedema an issue that is curable ?

Thanks  

[Barb135]

You don't know for sure that you have myxedema.  Myxedema is a relatively rare condition of hypothyroidism.  With hypothyroidism, it's most often a life threatening condition stemming from long term, non treatment of hypothyroidism.  While the skin pinch test may be helpful in some instances, it's definitely not a hard and fast way to tell if you have myxedema (thyroid dermopathy).  For instance, I'm over weight, so there are very few places on my body that I can just lift up the skin without getting other tissue (fat) with it.

Myxedema is a non-pitting edema.  If you press on your lower leg, most often you will leave a finger/thumb print that may or may not turn white.  If your skin pits, you don't have myxedema.  Even that's not a fool proof test because other conditions can also cause non-pitting edema.

"The term myxedema has been applied to several clinical entities and is often used interchangeably with severe hypothyroidism, the common clinical condition in which the thyroid gland produces abnormally low levels of hormones.

Myxedema also refers to 2 different dermatologic conditions. Pretibial myxedema, an uncommon skin disorder, occurs not in cases of hypothyroidism but in hyperthyroid states, including, most commonly, Graves disease. The term pretibial is somewhat misleading, because the condition can affect other areas of the body and could more accurately be called localized dermopathy.

The other skin condition, called myxedema, occurs in severe, long-standing hypothyroid states and is caused by the deposition of mucopolysaccharides within the dermis."

Please note the phrase "LONG-STANDING HYPOTHYROIDISM".  Myxedema occurs from untreated hypothyroidism.  Most of us feel so miserable that we seek treatment long before myxedema sets in.  

From what I can find, thyroid dermopathy (skin changes) occur most often in those with Graves Disease/hyperthyroidism.  Myxedema associated with hypothyroidism is usually a life threatening situation and requires hospitalization to stabilize thyroid hormone levels.

It's extremely unlikely that you would need corticosteroids.  In the unlikely event that you have myxedema (thyroid dermopathy), it should resolve, or at least stabilize, once thyroid hormone levels are adequate.  

[Red_Star]

I have also had pretibal myxedema as well due to Graves antibodies and it took a year to go away after the Graves antibodies disappeared. I've had hypothyroid symptoms for over 25 years and at this rate it is going to take another 25 to be free of myxedema!

There is an article you can read in more detail: Myxedema- The forgotten Test for Hypothyroidism but this is the first few paragraphs...

"Myxedema

In 1878, Dr. William Ord performed an autopsy on a middle-aged woman who succumbed to hypothyroidism. Upon cutting into her skin, he saw tissues that were thickened and boggy. The tissues appeared to be waterlogged, but no water seeped from his incisions. Dr. Ord realized this disease was unique and previously unrecognized.

Dr. Ord summoned a leading chemist named Halleburton to help identify the substance causing the swelling. What they found was an abnormally large accumulation of mucin. Mucin is a normal constituent of our tissues. It is a jelly-like material that spontaneously accumulates in hypothyroidism. Mucin grabs onto water and causes swelling. Dr. Halleburton found 50 times the normal amount of mucin in the woman’s skin. Her other tissues also contained excess mucin.

The doctors coined the term myxedema. Myx is the Greek word for mucin and edema means swelling. Myxedema was adopted as the medical term for hypothyroidism.

The edema or swelling associated with hypothyroidism usually begins around the face, particularly above or below the eyes and along the jaw line. However, the skin on the side of the upper arms may be thickened early in the course of the disease. The swelling associated with hypothyroidism is firm and will eventually spread throughout our body’s connective tissues.

One of the many functions of connective tissue is to help hold our bodies’ organs and structures together. Connective tissue lines our blood vessels, nervous system, muscles, mucous membranes, the gut, as well as each and every cell in our glands and organs. Abnormal accumulation of mucin in these tissues causes swelling and significantly impairs normal function.

This type of swelling is unique to hypothyroidism. Medical textbooks about hypothyroidism state that myxedema is thyroprival (pertaining to or characterized by hypothyroidism) and pathognomonic (specifically distinctive and diagnostic). Translation: if the thickened skin of myxedema is present, you have hypothyroidism. Normal skin is relatively thin, and you may easily lift it with your thumb and index finger. If you look, you’ll find a number of people whose skin is almost impossible to lift. This is due to the marked swelling and glue-like infiltration of mucin in the skin and underlying tissues that result from hypothyroidism. Women’s skin usually has slightly more subcutaneous fat than men. Hence, their skin tends to be thicker. There are many different degrees of myxedema."

[Red_Star]

Well quite a few paragraphs lol.

[jeffbursens]

Dear Barb & Red Star

I'm 90% sure that I have myxedema on both sides on my face. The cheeks and on one side a little more than the other. I had a echography a couple months back because the doctors didn't know what the swelling was and they said the subcutis was thicker but no reason was found. Now they know that it is hashimoto... Now I'm reading that the subcutis is exactly the layer in the skin that is effected when having myxedema so it has to be that. If I press in the 'balloon', it does not leave a mark but it jumps right up. It does not respond to diuretics at all. It would make much sense if someone would tell me for sure the kind of edema I have in my face is myxedema. Should I go to a dermatologist ?

Thanks people!

[Barb135]

I had the same thing prior to being diagnosed with Hashimoto's/hypothyroidism.  I think I even had a picture of myself during that time on my profile page; my whole face was puffy and I had big bags under my eyes.  When pressed the skin would spring right back and did not respond to diuretics.  It wasn't myxedema, but was a common symptom of hypothyroidism.  It went away as soon as my thyroid levels began coming up after I started on med.

Please note in the quote I posted:  "The other skin condition, called myxedema, occurs in severe, long-standing hypothyroid states and is caused by the deposition of mucopolysaccharides within the dermis."  Note the "long standing hypothyroidism".  Unless you've been suffering from severe hypothyroidism for many years, I'd doubt seriously that you have myxedema.

[jeffbursens]

Off course I hope you're right and you've been there. It's just so weird that when it's there, it won't go away. Whatever I try to do. (drink lot's of water, diuretics, eat very clean,...) I've been taking T4 for 2 months and 10 days and I don't see any progress. I'll ask my doctor about T3 too, maybe that would be the key. It 'scares' me a little when people say the puffiness went away as soon as their thyroid levels came up. (like you) My blood levels are 'perfect' since a couple of weeks and I just keep swelling up. It's hard to bear.

Thank you Barb for your wisdom

[Barb135]

You've only been on thyroid medication for 2 months, which isn't long enough to do much of anything, since it takes 4-6 weeks for the med to reach full potential in your blood, then your body has to "get well".  Your body will heal the most important things first, such as regulating heart rate, brain activity,  etc, then it will heal the less important things.  

One thing that many people don't understand is that thyroid conditions are an illness and like any other illness, the body has to heal.

While your labs are "perfect" on the report, they may not be perfect for you. If you recall, rule of thumb for FT4 is 50% of the range; your level is at 84%.  Rule of thumb for FT3 is upper half to upper third; your level is at 60%.  FT3 should be higher in its range than FT4 in its, so your numbers are upside down.  Since you've been on the med for such a short time, they might right themselves as time goes on, so it might be a little too soon to think about adding a T3 med.

The puffiness you have is more aesthetic than anything else; it's not really a health hazard, at this point, because you're getting treatment, and you probably weren't hypo long enough to have any life threatening issues.  

If your swelling continues to get worse, you should talk to your doctor and have him start checking for other things, such as adrenal issues.  Cushings disease, one of whose main symptoms are "moon face" might be something to look into.  If you haven't researched that, you can read some about it via the following link:  http://www.webmd.com/a-to-z-guides/moon-facies.  

Of course, you should also be aware that there are other things that can cause facial swelling, so you're best bet is to talk to your doctor.  

Another thing to keep in mind, is that Hashimoto's is progressive, in that the thyroid continually produces less and less hormones as the antibodies destroy healthy tissue.  You'll probably have to increase your medication periodically, to keep up with this progression.  

[jeffbursens]

Ok I'll wait a little longer and review my situation in a couple of weeks. I'd like to know what does upper half to upper third means? Is it around 75% ? And how can you so easily calculate the percentages of the levels between the ranges? What formule do we have to use? Maybe it's very easy but I had not been able to find it. Thank you

[Becca6381]

I am so glad I found this site. I have self diagnosed myself with facial myxedema but can not get a doctor to even act like it matters. I just keep being told the levothyroxine is all I need to be taking. I have read numerous studies and articles about t3 replacement along with t4 replacement. But it is like speaking to a deaf person everytime I bring it up. I still have all the symptoms of hypothyroidism and facial myxedema I am currently on 200mcg levothyroxine daily. I am sick of looking in the mirror and not seeing myself. I know we all change with age but this is more than that. My entire facial structure looks different. I have Graves Disease so eyes popping out is bad enough without the swelling under the eyes the droopy jaw line. What in the world Should I DO?