Pitting Edema

[SNOWKITTEN]

I've been having really bad pitting Edema in my legs/ankles/feet that keep getting worse. Its gotten so bad I have a hard time bending over, doing ANY activity and I keep falling (its also painful). I also have fatigue, muscle pain, joint pain, severe leg cramps, body swelling (different from the pitting edema), stiff hands, loss of coordination, loss of concentration, memory symptoms, cold hands (and cold in general), dizziness, nausea, weight gain (40+ lbs in two months), loss of appetite, muscle cramps, depression, anxiety, etc...
I've had low protein levels (not significant but enough to be low and decreasing) for the past 3 years. I kept seeing my provider but since my urine is normal for protein she was going to ignore it untill I started falling.

Test results.....
Urine is normal
Heart is normal
Cholesterol/glucose/sodium normal
Low Protein (5.2)
Low Albumin (3.1)
Low vitamin D (13) (was put on meds that havn't helped above symptoms)
Low calcium (8.3)
Low MCH (26.9)
Low MCHC (33.2)
Low IGA (49)
Low IGG (225)
High TSH (4.95)
High Transferrin (355)
High Alpha-1-antitrypsin, feces (145)
Celiac disease panel- Negative
EGD normal (except mild gastritis)

My question is does anyone have any idea what is wrong or could be wrong? Im very miserable and it has seriously affected my daily life.

Oh it should also be noted that I crave protein like crazy and no matter how much I eat, It doesn't increase my levels

[Anonymouse88]

Have they considered hypothyroidism?  High TSH indicates that you're not producing enough thyroid hormone.  I can't really comment on the rest of the tests.  I would get a different provider, personally.  Those are not symptoms you should be ignoring based on a urine test.

Try to keep your feet up as much as possible, and consider compression stockings to help keep the fluid out of your legs.  A diuretic might be warranted to help get rid of the extra fluid, and I suspect the weight gain is mostly fluid.  Are you on any other medications?

[silverfox67]

A high Transferrin indicates Hemochromatosis. Iron overload disease.  Why didn't your doctor recommend phlebotomy?  They take out a pint of blood and throw it away - and some of the symptoms go away for a while. - I have had three phlebotomies - it is time consuming but doesn't hurt any more than having an IV.  You might try Dandelion tea to rid yourself of some of the edema.  - Sincerely hoping you get well soon.

[SNOWKITTEN]

Thank you very much for your ideas, to update/clarify.... I've tried a diuretic (prescribed) and it didn't work (even doubling the dose). I tried compression stalkings as well and again they didn't work.
I suspect your right, but my doctor doesn't think i have hypothyroidism because my TSH "isnt that high". Even though literature says anything over 3.0 is high. Im actually going to see my psychiatrist today. She's under the mind frame that meds would help. She just didn't want to step on the docs toes. Now that i've seen the specialist my doc wanted me to im hoping she will be open to prescribing.
Meds...
Wellbutrin (depression)
Sertraline (anxiety)
Maxalt (migrains)
Albuterol (asthma)
Vitamin D (deficiency)

[SNOWKITTEN]

My doctor is a family med specialist (to be specific... for the government). Which means she will more then happliy keep maintenance, and diagnose a URI, but when it comes to the real stuff she likes to pawn it off on other people. When the gastroenterologist was reviewing my labs he did point out my transferrin was "nothing". What were your levels? I honestly have no faith in a doctor and labs. They seem to think everything is "nothing" unless your screaming and crying (to note... I'm not the dramatic type).
I have tried green tea, but not dandelion, i will do that next. thanks :)

[Red_Star]

Protein losing enteropathy: low protein, low albumin, elevated alpha-1-antitrypsin, low IgA, low IgG. Main symptom of this condition is oedema including pitting odema. Other symptoms depend on the underlying cause.

Hypothyroidism - high TSH. Treatment is thyroid replacement. You exhibit numerous symptoms of hypothyroidism including fatigue, feeling cold and weight gain, poor appetite. There are hundreds of possible symptoms of low thyroid function.  The most common cause of hypothyroidism in the western world is Hashimoto's thyroiditis (autoimmune disease). Further thyroid testing includes - free T4, free T3, thyroid peroxidase antibodies (TPOAb) and thyroglobulin antibodies (TgAb).

Deficiencies: Iron deficiency (low MCH, low MCHC, high transferrin), vitamin D deficiency, calcium deficiency (vitamin D is essential for calcium absorption).  Numerous causes for all these deficiency states but includes hypothyroidism and various conditions listed under protein losing enteropathy. Every nutrient deficiency state lists numerous symptoms but iron deficiency causes fatigue, vitamin D deficiency may cause bone and muscle pain and calcium deficiency is a cause of muscle cramping.

Highly suspected: vitamin B12 deficiency (symptoms include ataxia causing falls, memory loss, poor concentration, fatigue, nausea, poor appetite).  Causes of vitamin B12 deficiency include hypothyroidism (due to metabolism slowing down stomach acid production), conditions listed under protein losing enteropathy, and gastritis.  

***

Excerpt from Patient UK - Protein-losing Enteropathy...

"Protein-losing enteropathy (PLE) occurs in a number of gastrointestinal (GI) conditions that cause excessive loss of serum proteins into the GI tract.  Three main mechanisms are involved:

Mucosal disease with ulceration with protein loss across disrupted mucosal surface:
Chronic gastric ulcer
Gastric carcinoma
Lymphoma
Inflammatory bowel disease
Idiopathic ulcerative jejunoileitis

Lymphatic obstruction causing loss of protein-rich chyle:
Primary intestinal lymphangectasia
Secondary obstruction due to heart disease, infection, neoplasm, retroperitoneal fibrosis or sarcoidosis

Idiopathic alterations in mucous capillary permeability:
Ménétrier's disease
Zollinger-Ellison syndrome
Acute viral or eosinophilic gastroenteritis
Coeliac disease
Allergic protein-losing enteropathy
Giardiasis and hookworm infections
Amyloidosis
Common variable immunodeficiency
Systemic lupus erythematosus (SLE)"

[jemma116]

You did say that you suffer from joint and other pains.

Do your take any anti inflammatory drugs for this or any cholesterol lowering medications.

Some medications can cause allergic reactions.
I had to stop taking Ibuprofen for my joint pains because it caused oedema in my legs.  

May sure your raise your legs as much as possible to help drain the fluid away.

[Red_Star]

Excerpt from Integrative Psychiatry: Don't Just Treat The Symptoms, Treat The Cause: Serotonin...

"The following factors can cause low serotonin levels:

Alcohol
Artificial sweeteners (aspartame)
Caffeine
Cigarette Smoking
Diabetes
Dietary deficiencies of nutrient co-factors
Ecstasy, Diet Pills, and certain medications
Genetic Predisposition
Hormone Imbalances (thyroid, adrenal, estrogen)
Hypoglycemia
Insulin Resistance
Inflammation
Infections
Poor Diet
Lack of exercise
Lack of sunlight
Problems converting tryptophan to Serotonin
Problems with Digestion
Stress and Anger
High Cortisol Levels
Low Serotonin Symptoms

Low serotonin levels are often attributed to anxiety, depression, panic attacks, insomnia, obesity, fibromyalgia, eating disorders, chronic pain, migraines, and alcohol abuse.

Negative thoughts, low self-esteem, obsessive thoughts and behaviors, PMS, and Irritable Bowel Syndrome are also symptoms of low serotonin."

Asthma and hypothyroidism:
http://www.medhelp.org/posts/Asthma/asthma-and-hypothyroid-together/show/1037622

[SNOWKITTEN]

HI jemma,
  I take ibuprophen/naproxen occasionaly but not chronically. I dont take cholesterol meds, that part of my blood tests are perfect.

[SNOWKITTEN]

Thanks for the thorough list redstar. My main doc said it was PLE causing my swelling as well. She tested for a heart/kidney/liver condition but those are all normal. Then she sent me to a grastroenterologist who said the stool sample she had me take was only slightly elevated and not indicated of PLE. He seemed more concerned with the decreased IGA & IGG. He did an EGD that came back normal so its not my stomach. So now all causes of PLE are ruled out and Im back at the drawing board.

Oh and to note, a T4 free was also run. That was 0.95 (normal). Only my Tsh was elevated.

[SNOWKITTEN]

Oh as for the list of possible causes for low seritonin....
Alcohol - dont use
Artificial sweeteners (aspartame) - dont use
Caffeine - drink tea
Cigarette Smoking  - dont use
Diabetes  - no
Dietary deficiencies of nutrient co-factors - apparently
Ecstasy, Diet Pills, and certain medications  - dont use
Genetic Predisposition -possible
Hormone Imbalances (thyroid, adrenal, estrogen) - possible
Hypoglycemia -possible
Insulin Resistance - no
Inflammation - possible
Infections -no
Poor Diet - no
Lack of exercise -possible since I can barely move let alot exercise
Lack of sunlight - summer in alaska, we only have sunlight
Problems converting tryptophan to Serotonin -unknown
Problems with Digestion - no
Stress and Anger - no
High Cortisol Levels - unknown
Low Serotonin Symptoms -unknown

[Red_Star]

Sorry i didn't space out the wording well. Low Serotonin Symptoms was the title for some of the symptoms below that list of causes. :)

A very large study showed over 95% without any thyroid disease symptoms has a TSH of 2.5mU/L. If you have symptoms then that's a different matter.  No lab can measure inside your cells to see if there is enough free T3 entering the nucleus of the cell.  

There are plenty of clinical tests you can try out. Have a look for the myxedema skin pinch test. No other condition causes this but hypothyroidism. I'm not sure how long you need to be hypothyroid for that symptom to develop but i've been misdiagnosed for 25 years (labs normal) so i have severe myxedema everywhere except the tops of my hands. My nose broadened as well which is a very late sign. Thankfully that has reduced with thyroxine.

[Red_Star]

Sorry i need to reedit a sentence: A very large study showed over 95% without any thyroid disease symptoms has a TSH of UNDER 2.5mU/L.

[SNOWKITTEN]

Where do you get the myxedema skin pinch test? Is that something I can ask my doctor to run?
What is myxedema exactly? I looked it up and get (Swelling of the skin and underlying tissues giving a waxy consistency, typical of patients with underactive thyroid glands). Is this correct?

[SNOWKITTEN]

I assume you were put on medication? Did it help the symptoms?

[jemma116]

Myxedema causes skin thickening or swelling and is usually described as non-pitting edema.  What this means is if you press your finger on the skin that is thickened or swollen and then remove your finger, you will not see an imprint.

With fluid retention, if you press your finger on the swollen limb, it will leave an indent and will slowly fill up again.

Having read your first question again, it does appear that you may have hypothyroidism.  A blood test should confirm whether that is the case.  But there may be other causes.

If your doctor won't test you for hypothyroidism, it may be worth seeking a second opinion to confirm the condition one way or another.

Onions, seaweed, diary produce, eggs,  and other fruit and veg contain iodine, which is needed for the thyroid gland to function properly.

Do you notice whether your problems get much worse before you get a period?

[SNOWKITTEN]

They did test my thyroid and my TSH  was high but since my T4 was normal my doc didn't want to do anything.

No my symptoms don't correlate with my period. Theyre constant.

[jemma116]

Have you tried the press test on your swollen leg?
Does it correspond with the results for myxedema  or fluid retention?

[Red_Star]

There is a video demonstration on youtube: Hypothyroidism Type 2: Myxedema Symptoms.  A article to look up on google: "Myxedema- The forgotten Test for Hypothyroidism.".

I'm not your average case admittedly because i have to overmedicate on thyroxine to get rid of some of my hypothyroid symptoms.  I'm still trying to work that out because overmedicating is not good for numerous reasons but i cannot breath otherwise!  My breathing really kicked in was when Hashimoto's thyroiditis joined my cellular issues.  By the time i hit a TSH of 6 mU/L (0.4 - 4.0) and free T4 of 13 pmol/L (10 - 20) i developed severe bradypnea down to 6 breaths a minute and could barely breath. I was literally gasping for thyroxine.

[jemma116]

Sorry to hear of your thyroid problems Red_Star, glad to know that it is being controlled now.

I had a look at the YouTube and the pinch test.  But also an video called Four Ways To Diagnose Hypothyroidism - Dr. Hotze's - Health & Wellness Solutions, which explains all the symptoms and what to look out for.  Well worth looking at.

SNOWKITTEN, you need to go back and see a different doctor and present him/her with your clinical symptoms, physical signs, if your body temperature is constantly below 98.6, and also if you have a family history of hypothyroidism.

You may not have full blown hypothyroidism at the moment, but may be borderline.

[SNOWKITTEN]

Oh i have clear pitting edema (+3) in my lower legs/ankles. And Non pitting edema in my feet upper legs, arms, hands face.
My temp is consistently at 96/97 degrees (has been all my life).
I havn't checked out those videos yet but definantly will later today. thanks :)
I printed off this pretty cool hypothyroidsm symptoms list last night (had nearly every symptom) and presented it to my BH specialist. She talked to a doctor and they said my TSH was definantly too high and especially with my symptoms i would benefit from meds. So she prescirbed me some levothyroxine! Im very excited to feel better, ill let you know if it works or if i have to go back to the drawing board.
SO sorry to hear your troubles red_star. Are you self overmedicating to treat your symptoms or is it doctor monitored?

[jemma116]

Glad to know that you have now been put on thyroid medication.

The dosage is a trial and error at first.  It may take a while to get the right dosage for you.  

Your doctor should monitor your blood levels to see how you are on the dosage prescribed and it need to be adjusted until you get it right.

Hope things will settle down for your and your health starts to improve.

Thanks for letting us know.

Best wishes.

[SNOWKITTEN]

ok I looked at those videos.....
I dont have myxedema now, my body is so swollen it literally feels like im going to burst out of my skin, but i do remember my skin doing that before the swelling. Im wondering if thats a fluke or not. Ill keep an eye out.

The other video (4 ways to diagnosing hypothyroidism) just flabbergasted me. I had nearly every symptom, had EVERY physical manifestation & Had the temp issue. Family HX is a little fuzy, my mom had high tsh on her last test but she had so many other issues she didn't follow up & I dont know my fathers side of the family.

I was really blown away over the temp thing. I've had low temp all my life. Im shocked a doctor didn't notice that something was off.

Thank you both for the video suggestions. They were helpful

[Red_Star]

Two of my symptoms that perplexed me for years, and i only realised in the last year or so were symptoms of hypothyroidism, are burning feet and pale lips (pure white on occasion).  I've never seen any article or video mention those two symptoms until now! Great video from Dr Hotze!  

I've have all those clinical symptoms listed on that video except the headaches, migranes, and high cholesterol. I have other conditions which cause low cholesterol.  My body temp was low 35C (95F) range. I'm seeing an endocrinologist who really doesn't understand the cellular issues but he's nice enough.  The Dr Hotze's of this world are few and far between!  

[SpaGirl1966]

You have a lot going on and I can only give a little input.....try a liquid vitamin d, make sure you take with a little fat....I always combine mine with my fish oil.

Have you ever been tested for food sensitivities? I am not celiac and had a vitamin d level of 11 at one point. I have to avoid gluten, dairy and soy. My vitamin d is now 50 and as long as I keep a pretty clean diet the inflammation in my system stays really low and the rest of my blood work remains mid range verses high or low.

See if you can find a physician that specialized in preventative medicine.....the best thing that ever happened to me!!!