After many years of all sorts of wrong diagnosis I passed through and after being in a true invalid state, when I lost everything - my body and mind, by pure chance I found out that I was hypothyroid and untreated for years.All my symptoms were obviously showing hypothyroidism but my blood tests were unfortunately always in what they call "within the range". Now, after trying with several types of medications I am on T3 only and every aspect of my normal functions and life returned on it. I could say that now I am perfectly fine if there aren't still 2 more problems I can't solve - mucin left from years of untreated hypothyroidism and water retention which I still have.
I am taking T3 for 2 years now, as conversion of T4 to T3 doesn't work properly in my organism. I am taking an optimum dose for me, 100mcg of liothyronine - any more or any less is not good for me, so this is not the reasons why my mucin and myxedema won't resolve, like they say it should be after a while on proper treatment. I am taking care of my vitamins and minerals, there isn't probably a single supplement on this world I haven't tried, I was injecting myself with vitamin B12 injections for 3 months and also, what was hardest for me - after years of being vegetarian I even started eating meat again recently (well only beef and pork, I can't eat anything else, especially chicken as I love birds too much!) because my albumin is a bit low and whey protein shakes didn't help much. I am 1.70 m (5.6 foot) tall and when I became ill my weight was around 51 kilograms (112 pounds). I know that somebody would probably say that I was too thin but this is how I was built. During the illness (and before T3) I came up to 68 kilograms! I looked like a balloon. But it was not from eating, this was all pure water as once I gained 10 kilograms in only a week. During the time this water became hard on some parts of the body, especially lower legs, and that all became soft again after I started with T3. Now I am going up and down in between 60 and 63 kilograms and this fluctuates depending on water retention. I also have visible mucin lumps, especially on my thighs and upper arms. I even spent few times on a 1 or 2 months juice diet only that expelled most of the water and I reached 56 kilograms but mucin stayed. About water retention, I am usually having it the most when I am either under a stress or physically exhausted. I don't have allergies from any food. My blood cortisol is a bit on the higher side, evening one especially, but when I tried to suppress it with some supplements I had even more of water retention. Histamine was extremely elevated before T3, nobody knew from what, I was taking antihistamines for 6 months then with no results. Now when I take them sometimes water retention becomes worse. I also had adrenaline and noradrenaline 10 times higher than normal (again before T3), I haven't checked them since then but I feel that they are not the problem any more. Aldosterone and renin are OK. Did test on vasopressin once (again before T3) and it was on 0. Doctors were telling me to take diuretics when I became ill, I was taking them for 6 months and felt horrible so I stopped. But recently I started taking them again sometimes. I lose 2 or 3 kilograms of water with them overnight. But it all returns eventually, so this is not the solution. Not a lot is said or written about myxedema, mucin and water retention that stays in many people even on optimum thyroid treatment. So, if anyone knows anything about this I would be really grateful.
Why not start by posting your optimum thyroid hormone levels, which should include Free T3 and Free T4, along with the inevitable TSH. Be sure to include reference ranges for each, since ranges vary from lab to lab and have to come from your own lab report.
It's extremely rare for anyone to take just a T3 only medication, as we all need "some" T4, even if we don't convert adequately, which many of us don't, since we need to maintain an adequate FT4:FT3 ratio. A lack of T4 can cause some hypo symptoms and fluid retention is a hypo symptom.
I forgot to mention that before only T3 I was on NDT but on it I still had some hypo symptoms left and also water retention, although there was T4 in it. Since I am on only T3 I don't have a single hypothyroid symptom, I feel perfectly healthy but the only thing that is left from my ill days is this water retention and mucin. I know lots of other people with this same problem - under medications everything is well with them but they, same as me, can't solve only this single problem. Many of them posted more or less the same question as I did on many places. But nobody ever gave them the exact answer. I think there is something missing in either medical experience or research, because you will hardly ever find a single person who had horrible problems with myxedema and water retention caused by hypothyroidism who can say that on proper medications managed to completely get rid of this.
I myself ponder the question of mucin periodically. It is not much talked about or understood from a treatment perspective, as far as I can tell. If you have ever considered an Ayurvedic detoxification called Pancha Karma, you may want to look closely at their concept of Ama. I went through a week-long "PK" 4 or 5 years ago. I had a swollen lymph node completely normalize, and it had been there for 20+ years. I had issues with the puffy face and eyes that I believe were mucin, and I also feel that improved... but I did not have the significant problem you describe. Good luck and let me know if you try it.
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