I am really fed up and can't live with edema (water retention) anymore. Does anyone has any thoughts to share about this?

I was untreated for hypothyroidism for years because my results were always more or less "normal". Instead I received all sorts of treatments for diseases I never had, just wasted time, money, health. I started retaining water year after I became ill. it was in 2009 and since then IT NEVER STOPPED. I gained 20 lbs of water weight in a week and another 16 lbs in the period of time after that. I am on T3 for several years now (before that I was briefly on NDT) and it gave me my life back since before it I was incapable to even walking without help and my mind was completely off. This is all fine now but water and mucin are still there. A bit more than a year ago I started taking diuretics, I did this last time years ago when I started swelling but stopped with them completely after an episode in which I was close to die, but it was not because of diuretics. At the moment I take 320 mg of Lasix and 200 mg of spironolactone. I started with 160 mg of Lasix but got resistant over time so I had to take more and more. I lost almost 24 lbs of water on diuretics and besides visible mucin, I got my looks and figure back, in my face as well since it was completely deformed from swelling earlier. I was taking diuretics every few days, but recently I have to do it every other or every day. Just last night I gathered 4 lbs of water, my face and whole body is puffed and I had to take diuretics again. Last winter I was diagnosed with insulin resistance. I was on Metformin and had terrible stomach and heart problems on it and just when I got used to it my hair started to fall big time, so I stopped with it and at the same time my hair was fine again. I took Berberine after that but had no results and stomach problem as well. Now I am of newest medication - Forxiga (depagliflozin) which exerts sugar through urine. My sugar is normal now, especially since I am on ketogenic diet but there is no change in water retention, so then it's not caused by insulin resistance. So what is it?? I am living with this question for 7 years now and I can't take it anymore. I am planing my life according to diuretics and I can't live like this any more, especially as they have less and less effect. I tried every single supplement and nothing worked. Only thing I haven't tried yet is ADH (Vasopressin) anti diuretic hormone antagonist. Primitive antibiotic Demeclocycline (Ledermycin) not produced in most of the countries now, except in India and few others, has that effect but I don't know how to get it or new drug for this - Tolvaptan but this one is extremely expensive. This is last thing I can try but who knows will they work. I don't know what to do. My organism is acting as it has to hold to all of water and won't let go of it although I drink enough if water. I am really fed up and tired, my face changes everyday, when I am full of water my eyes are half closed and my whole body hurts. Sorry for such a long post but can anyone help with any suggestion? Thank you.

10 Replies

  • Poor you, really feel for you. Quick question - how much T3 do you take? What do your thyroid blood test results look like?

  • Right now 137.5 mcg of T3. I was fine even on 100 mcg but I try recently to raise my dose again in hope that this might help. I did it before, I got up to 150 mcg and nothing happened in the water department. I just got a but shaky on 150 mcg so I figured it's too much. I haven't done tests on thyroid for years. I did only TSH 2 years ago and it was 0.01 which is good because since my TSH is suppressed thyroid nodules that are now occupying 2/3 of my thyroid stopped growing (before T3 they were spreading really fast). All my other test are fine (except those connected to glucose, insulin and cholesterol that follows all that, but it was last winter when I was diagnosed with insulin resistance, now my blood sugar is completely normal on medications and diet.

  • I see. Well some people do seem to have T3 resistance and need lots of it - just like you can have insulin resistance. But I suppose really you need to know whether you're absorbing enough of that T3. I think an FT3 test would be interesting - TSH is pointless when you only take T3.

    Has Cushing's Syndrome been ruled out? What tests has your doctor done? Are they actively trying to figure out what's wrong or just leaving you to it?

  • Thank you. Cushing's Syndrome was one of the first things on my mind. But I checked cortisol levels so many times during years and my morning and evening cortisol were always within reference range, although a but on the higher side. So few years ago I decided to try the supplement that should lower cortisol - Phosphatidylserine but reaction was completely opposite, I started to retain water even more and had to stop with it.

    About my other tests, my kidneys are fine, liver as well, no heart problems, I had extremely high adrenaline, noradrenaline and histamine before I was on T3. I haven't done test on them for years but I can feel that adrenalines are not a problem any more, don't know about histamine however, I don't have allergies on anything or food intolerance. If I take antihistamine, even the strongest one I don't feel any difference. Tests on vitamins are okay as well, albumin was a bit low since I was vegetarian for years but year ago I started eating meat again (only for health reasons) and now my albumin is fine. Have to pay for all tests on my own, private doctors as well... it's all so expensive. Will do test on FT3 next week, don't know what else I could do.

  • Hi, diuretics will cause the body to lose potassium and this needs to be balanced with sodium and chloride and the best solution is trace minerals. How is your kidney function? and your estrogen levels, both can result in odema. Blood sugar problems are caused by a lack of trace minerals, in particular chromium and vanadium. Your body does not get sick from a lack of drugs but from too many toxins and lack of proper nutrients.

  • Yes, I know, that's why I'm taking high dose of potassium each day. My kidneys are fine, had I bit of problem with them while I was hypothyroid and not treated, as with many other things, but now this improved completely and my kidney tests are always completely normal. I take strong miltivitamin plus number of additional minerals. Multivitamins I use contain a lot of chromium but I can't take any more than that because I tried and my hair started to fall, same as with Metformin. Since you mentioned toxins sometimes I think that I have leaky gut syndrome, I tried solving this with glutamine and probiotics with just a bit of improvement, now I just ordered number of digestive enzymes, quercetin and few other things from Amazon following instructions from some specialist for that I found on the internet but I don't have high hopes since several months I already spent on glutamine and probiotics didn't help much. I am taking combined low strength contraceptive pill most of my life because I had very painful and irregular periods. However, I stopped taking it for several years to see will I feel better without them but during this time absolutely nothing changed.

  • If i were you, i would/am now, on the autoimmune paleo diet and am now stopping more foods. If i were you, i would concentrate on inflammation, which is why you are insulin and thyroid hormone resistant. Google each condition and read all you can like Mark Hyman, Dr. John Lowe. Cut out ALL inflammatory foods. So sorry that you ended up on diuretics and metaformin, as the cover symptoms, not address causes and make people worse. Diuretics cause fluid retention, once your body is depleted of its minerals. I would go up on your t3. I believe your liver, kidneys ..everything is so slowed down, that you are drowning in your own fluids. Google autoimmune paleo reset diet..do it, follow it to a t. You have nothing to lose and everything to gain. I believe your doctors are making you worse, not better..happened to me. All this can be reversed naturally, if the doctors have not done too much damage. Do you have hashi's?..? Sure seems like you do and need to know, if you don't already. You sound miserable!

  • Yes, I am miserable. and yes I am drowning in fluids, you are completely right. I am currently increasing my T3, I will go up as much as I can tolerate. I hate diuretics from the bottom of my heart and I know that they are making things even worse but if nothing changes I will drown if I don't take them. So I have to do something, that's why I asked this question because I can't live like this any more. But I have to find solution that will work so that I can stop with diuretics for good. Oh, I am dreaming of that day, if this happens all my problems will be solved. But I am stuck with this water for 7 years, on diuretics or not and I am so mad because I tried, I really tried all sorts of things and nothing. I was on Whole 30 diet last spring. It's like paleo but even more strict. I eliminated all inflammatory foods, I had high hopes when I started with it and nothing changed... The only times when I was not retaining water is when I didn't eat at all, several times I spent 1 or 2 months on lemonade diet - no water retention, as soon as I started eating anything or even only drinking fresh orange juice that has not been strained water retention returned. I'll look at autoimmune paleo reset diet, maybe it has something I haven't tried, thank you.

  • I have water retention for years. I thought it's because of Levo (I just started adding T3 to it few days ago). You are not taking Levo though. Maybe it's not thyroid related at all. But what can it be? I hate when they say to me it's Idiopathic edema, there must be something that's causing it!

  • I would give anything to know why is this happening to me. I tried absolutely everything, I am desperate and don't want to live like this anymore. It's not a life it's a nightmare, my life is being dictated by water in my body that is drowning me and I don't even know what is the cause of it.

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