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Pitting Edema

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



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Avatar universal
I just wanted to put in an update;
I was sent to an infectious disease specialist who says that he thinks my protein loss in from my intestines anyways. When I asked him why the gastroenterologist said i was ok, he said that the gastroenterologist only did an EDG and nothing was SEEN. It didn't mean there was nothing wrong, and there was alot more intestines that weren't veiwed. As for the IGG/IGA, he thinks i have CVID (which consiquently causes intestine issues). He has never seen a case so he did more blood tests and depending on those outcomes (if they indicate i do have it), i will be sent to an immunologist.
Helpful - 0
4851940 tn?1515694593
Thanks for the update.
I found it very interesting about the low protein and the low immunity.

Did the doctor say that they will give you a short course of steroids to build up your immunity?  Or will you be having more tests to find the cause of the low immunity?  I suppose sometimes there is no answer to the low immunity.

Hope you are eating and drinking well.

Best wishes.
Helpful - 0
Avatar universal
Ok so update..
We found out why im swelling. We knew it was my low protein, but we couldn't figure out why since all modes of protein loss had been covered. We figured out my protein is low because my IGA/IGG (immunity) is low. Now we have to figure out WHY thats low lol. But at least were on the right track.
Helpful - 0
4851940 tn?1515694593
Oh I am pleased that at last you have someone who is trying to find out what is causing your problem.

About your p.s., I am thinking.

Hope they get to find the cause and get you sorted soon.

Best wishes.
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Avatar universal
Just an update: had an apt with gastro and they said my EGD was normal so they sent me to an internist. She says i stump her, but she thinks its nephrotic syndrom. I have all the signs/symptoms/blood tests, but urinalysis is normal. BUT, my urine was very diluted and that can give a false negative, so she's having me do a 24 hour urin test. I should know the results by wensday, but she said either way she's going to get me feeling better. I finally feel like theres hope !!

p.s one complication of nephrotic syndrome is hypothyroidism... go figure!
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Avatar universal
I asked my doctor if I could be tested for magnesium deficiency a few months ago. She told me there is no specific test. They go by the potassium level. It wasn't low so she didn't my magnesium would be.

Side note, i have a rare family hx of low potassium (hypoaldosteronism i THINK is what it is but i could be wrong). Something about not processing potassium well. I havn't had low potassium personally but i do watch it. I wonder if magnesium has a significant role in that? I'll have to suggest it to my mom. Thanks for the heads up. I think i'll get a supplement in hopes it will help the vit d.
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4851940 tn?1515694593
I'll have to start taking my magnesium again then.

I have suffered on and off throughout my life with fluid retention - due to hormonal problems, kidney problems and recently from taking Ibuprofen.  I know if I consume too much salt in my diet then I will puff up and get very thirsty.

Thanks Red_Star for the info.

Helpful - 0
1756321 tn?1547095325
I have very bad oedema besides the myxedema. My abdomen and stomach looks like a bad case of ascites. Ugh!  This fluid retention has improved with thyroxine but i'm not optimally treated by any means.  Pitting oedema is rare in hypothyroidism.  

The body uses magnesium to convert vitamin D to active vitamin D so vitamin D supplement "side effects" are usually due to magnesium deficiency. Too much calcium also lowers magnesium. Magnesium is the boss and is needed for vitamin D and calcium absorption.

Magnesium, like thyroid hormone, is needed for ATP (energy). And ATP is needed for the sodium potassium pump (Na+/K+-ATPase) that moves potassium ions into the cell and sodium ions out of the cell. Mess with that pump and you have swelling and fluid retention.

*"Rapid pitting recovery under 40 seconds - hypoalbuminemia:

• Impaired protein synthesis
– protein intake: starvation, kwashiokor
– absorption of proteins: malabsorption
– hepatic synthesis due to liver disease

• Increased loss of protein
– Skin loss:  burns, weeping skin diseases
– Urinary loss:  nephrotic syndrome
– Fecal loss:  bowel disease

Slow pitting time over 40 seconds - normoalbuminemic edema:

•Systemic venous hypertension
– Congestive heart failure
– Pericardial diseases, tricuspid valve disease

•Regional venous hypertension
– Inferior vena cava syndrome
– Venous thrombosis
– Lower extremity venous insufficiency

Excerpt from Edema - Brad Anawalt, MDVA Puget Sound University of Washington
Helpful - 0
Avatar universal
I didn't start taking the vitamin d untill after the swelling. So chain of events are...

-3 years ago started feeling tired/sore/weak
   -Had blood test, low protein was only finding (was told to eat more protein)
- 7 months ago noticed swelling
   -Went to doc, she tested my urine (neg for protein) and put me on lasix for 30 days
- 6 months ago, swelling worse, returned to doctor
   -Labs were taken, protein/calcium were low
   -Doc told me they would wait untill after i was finished nursing to pursue
-3 months ago, Had fasting labs for annual
   -Protein low, albumin low, vitamin D REALLY low, calcuim low, TSH high
   -Was put on 8 week of HIGH dose vit d, with vitD maintenance after
   -TSH ignored
-2 months aog, swelling even worse, started falling. Returned to doc
   -Doc said she would look into it and call internal med
1.5 months ago, internal med said unless i was having chronic diarhea to not do anymore work up. but Doc decided to have me do a stool sample.
   -High Alpha-1-antitrypsin, feces
   -Refered to internal med gastroenterologist for EGD
-1 month ago, asked to do celiac panel
   -negative panel
-2 weeks ago, EGD
   -Normal
Helpful - 0
Avatar universal
I didn't start taking the vitamin d untill after the swelling. So chain of events are...

-3 years ago started feeling tired/sore/weak
   -Had blood test, low protein was only finding (was told to eat more protein)
- 7 months ago noticed swelling
   -Went to doc, she tested my urine (neg for protein) and put me on lasix for 30 days
- 6 months ago, swelling worse, returned to doctor
   -Labs were taken, protein/calcium were low
   -Doc told me they would wait untill after i was finished nursing to pursue
-3 months ago, Had fasting labs for annual

swelling even worse, started falling. Returned to doc
   -

Helpful - 0
4851940 tn?1515694593
As you said in your other reply that you do take Vitamin D, have a look on the leaflet for any side effects.

I know my aunty who is 81 now has to take calcium and Vitamin D, and she has had to stop taking the Vitamin D.  I do remember he complaining about swollen fingers.

Is there any other long term medication that could be causing the swelling?
It may be to do with the hypothyroidism.

I presume that you have cut down on your salt and sugar intake?

Hope you get a better night's sleep tonight.

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Avatar universal
I was amazed at the amount of symptoms as well. I know you dont have to have ALL of the symptoms, but it amazed me at how many i DID have.
I actually had a really really bad night last night. Woke up from a nap so swollen/stiff/sore that i was in tears (im not a cryer). I know the new meds wont take effect for a few weeks but im not even sure if they will help with the swelling in the first place since pitting edema is not a symptom. Im wondering if i have something else with hypothyroidism as well.
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Avatar universal
I've never had an allergy panel done but it might be worth trying. I think ill ask my provider for it. She's pretty go about doing what i want, she just wont do much unless I specifically ask. Its why i ended up here. I figured if i get some ideas from others I would know what to ask for.
Im already on a high dose of vitamin D so I cant take more, BUT, if my levels havn't improved ill ask my doc about the liquid, thanks for the idea.
Helpful - 0
4851940 tn?1515694593
Well it was Red_Star's idea to check out You Tube that got me looking at it and I came across that one in particular.  I was amazed about all the symptoms that you can get with hypothyroidism.  The common symptoms everyone associates with hypothyroidism is weight gain and not being to lose it and feeling cold all the time even in hot weather.

Of course, you do realise not you do not have to have all the symptoms that are mentioned.

The information on the types of food to eat and avoid were interesting too.
Avoid broccoli and cauliflower (can't remember any more foods), because these hamper thyroxin levels.

My husband suffers with burning feet, but this is as a result of damaged nerves due to diabetes.  When he goes to the doctor again, I will tell him to get a blood test taken to check his thyroid levels.

Hope you both get the right treatment to help with your condition.

Best wishes.

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Avatar universal
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!!!
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1756321 tn?1547095325
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!  
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Avatar universal
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
Helpful - 0
4851940 tn?1515694593
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.
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Avatar universal
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?
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4851940 tn?1515694593
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.

Helpful - 0
1756321 tn?1547095325
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.
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4851940 tn?1515694593
Have you tried the press test on your swollen leg?
Does it correspond with the results for myxedema  or fluid retention?
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Avatar universal
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.
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4851940 tn?1515694593

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?
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