Anyone try NAC for myexodema?: No matter what I... - Thyroid UK

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Anyone try NAC for myexodema?

No matter what I do I can't get rid of the fluid retention. I walk 4 days a week for 46 minutes a day and go to the gym 3 times a week and eat healthy and still can't get rid of the fluid

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Check your heart and kidney

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I struggle with the same issue so I am very anxious to read the replies to your question. My glasses have become too uncomfortable to wear because of this and I primarily wear contacts.

I am going in for labs tomorrow hoping to find some answers in the results.

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Go to your doc as nobody can really diagnose you - they can only let you know about their experiences - since breaking my ankle a few years ago that tends to swell and like you I walk the dog 5-7 days a week - eat healthy as I am with a slimming group - what I do for my legs is make sure when I am sitting down they are raised - it's probably nothing like what you experiencing as I don't know about your condition of myexodema. Take care πŸ˜˜πŸ˜˜πŸ˜˜πŸ€—πŸ€—πŸ€—

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Exercise and elevating legs, advice re kidneys and heart is all advise about fluid retentio, and not about myxoedema , which is mucosin, not just water. I haven't found an answer yet, and GP only advises on water retention, which of course has no effect whatsoever.

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Have you looked at lipoedema

I've just been diagnosed most GP s don't know about it but you can research it

I had to go private to find someone who knew about it

Hope that helps xxx

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My GP hasnt heard of anything except Type1 and Type2 diabetes. Not even reactive hypoglycaemia.

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I was diagnosed with myxoedema in 1981, but maybe the GP just used that name instead of hypothyroid? Since learning all about hypothyroidism over the last few years so I can control it myself, it's intrigued me that he used the name myxoedema. I was certainly the chubbiest I've ever been around the time of diagnosis, but it dropped off once on T4. Although T4 never made me feel ok in myself and now I only take T3. I'm thinking the mucin should go by itself if you're adequately medicated. I'm not medically trained, but have you got recent blood tests to see if you're optimally medicated?

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Blood tests arent much use really if you're on T3? I think I'm just not taking enough T3, as I am cautious.

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I use NAC - it's wonderful stuff but it doesn't do that.

Are you being treated for Thyroid issues? Under active thyroid is a common cause of my myexodema.

But also B12 (and sometimes B6) can help reduce fluid retention and often go hand in hand with deficiencies for thyroid patients.

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Food sensitivities can cause fluid retention, could be worth trying an anti inflammatory diet to see if it helps:

thepaleomom.com/start-here/...

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I think if you were to try NAX you would need to have cortisol level checked with 24 hr saliva test to see if it was low. If it was you could try nax to see if that improves thyroid function and then reduces fluid retention. Bit of a long shot. I think it would be good if you posted your recent blood results and a list of symptoms. Also ask GP to test ferritin, folate, Vit d and B12 and post results. Fluid retention should reduce if thyroid treatment optimal. I have also read that drinking lots of water can help but it sounds like you thyroid treatment needs tweeking.

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I'm only 8st.7lb I've had this swelling in lower leg just above the ankle I was told it's mxodema by my GP a year ago when it was only in one leg now it's both its there all the time but when I walk etc end of day it swells more but goes down but never as it should. Endo said it's not Mxodema which isn't Water! it's a sticky type subtance. I've just gone on to 75 levo with T3 I personally don't think it's going to go if no one can actually say what it is just by looking at it I've only put on just over half a stone over a year since being on Levo got to 125mcg felt awful so now trying some T3 with Levo I don't think Levo works for me but got to keep trying bit longer

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I have big lower legs and a crease around the ankle also. Not fluid retention. Even T3 only hasn't shifted it, although it is not as bad as it was - my knees have started to appear. I weigh even less than you (but I am short).

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Could be lipoedema

See above xx

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Looked at that many times before but it seems to be an even more depressing thing to have with no solution at all other than surgery, so I'm hoping it isn't.

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Hi there (1) what is NAC please and (2) are you sure he doesnt mean lymphodema - excuse spelling

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N-acetyl-cysteine

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Hi Jaje,

Has your GP/Dr mentioned a diuretic? I have had oedema since they started messing my medication around. I now take 40 mcg of furosemide every day, (although my GP has increased it at the moment, due to the amount of fluid I have in my legs and I have damage to my lymphatic system now )

You do have to be careful with diuretics and you will have regular kidney function tests, but sometimes it is a must. If you have too much fluid, it can affect the heart and lungs and make the heart pump, hence the reason for the medication. However, the medication can affect the kidneys by making them work harder. If my tablet is working properly, (depends on how much fluid you have) I can lose 7lb in weight. If you are going to have medication, take it solely on its own, not with other medication. But you will go for a wee every few minutes for a few hours. It makes a big difference but a pain in the butt (excuse the pun), because you need to keep going to the loo!

Try and elevate you legs as much as you can, preferably have them higher than you heart level, especially in bed. Gravity helps and you will lose fluid automatically. Try and drink lots of fluid especially water. Try to abstain from soda drinks and caffeine as much as possible as it can make you retain fluid. Drinking water flushes your system out.

I am at a slimming group too, but they know that 9/10, if I have a gain, it is water retention. I am still wearing specialist shoes, due to the swelling in my feet and ankles.

If your GP does not recognise it, get a second opinion. Initially they may put you on a very light diuretic which is normally given for blood pressure, I think it begins with B. But definitely go and get it checked out.

Rest your legs as much as you can whilst sitting down and try and wear support tights etc, you can get them now, with a slight compression aspect, that will also reduce swelling.

Take care and let us know how you get on.

:)

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I'd suggest you get a new blood test as I think you may not be on a sufficient dose of levothyroxine. The aim is a TSH of 1. Ask GP (he or the lab may not ) TSH, T4, T3, Free T4 and Free T3.

Myxoedema is the original name for hypothyroidism:-

"swelling of the skin and underlying tissues giving a waxy consistency, typical of patients with underactive thyroid glands.

the more general condition associated with hypothyroidism, including weight gain, mental dullness, and sensitivity to cold."

When hypothyroid and we take replacement hormones (i.e. levothyroxine or alternatives) and doing so gradually reduces the 'swelling' of body . If levothyroxine - T4 - converts to the active hormone T3 which is the only active thyroid hormone needed to drive our whole metabolism.

When exercising before being on an optimum of hormones it reduces T3 in the body and because the swelling is not weight but mucin I'd suggest you lower your excersisng somewhat till you get a new blood test. At the same time ask for B12, Vit D, iron, ferritin and folate as we can be deficient.

Blood tests should be the earliest possible, and fasting. Also allow 24 hours gap between last dose of levo and thest and take afterwards. Get a print-out with the ranges and post for comments on a new post..

healthunlocked.com/thyroidu...

(I am not medically qualified but have hypothyroidism which was undiagnosed/untreated)

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From my understanding a lot of this is luck :(

It may be that your thyroid medication isn't optimal, and this is therefore a continued symptom. If you post recent blood results members will comment. But unfortunately I believe not everyone loses the mucin entirely, so you may be one of the unlucky ones and be stuck with it.

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I am taking NAC and i ve been experiencing weight loss. My face is slimmer and it helps a lot to get rid of mucin but in a period of 6 to 3 years aprox.

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6-3 years? Do you mean months? I hope! πŸ™‚

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6 mo - 3 years

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Well I started taking it couple days ago. I will try anything. I will just keep taking it and hopefully it will only take 6 months! Thanks for the info!

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I probably sound like a broken record I say this so much but my fluid retention was not sorted out until I added t3 to my levo *even though my test results on levo alone looked ideal*.

I had awful bloating everywhere - face, torso, arms, legs - and I was terribly constipated. I went on a camping holiday and for the first time in my life I was taking both flaxseeds and eventually laxatives because the constant travel (we covered something like 1000 miles per week) combined w uat made it impossible for my gut to work. Within a few days of taking 10mcg t3 I woke up and it had gone; my trousers were loose, my face looked completely different and my insides were working normally.

Just saying this because if your test results look great and you have no apparent conversion issues you might think there's no room for improvement, but I'm ever so glad I had a doc who said we should try a little t3 because otherwise I'd still be back there finding it hard to bend my limbs and dragging my swollen body around. It is so exhausting, I really feel for you.

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It sounds like you are finally on the road to getting optimal treatment. I am on NDT which has both T3 and T4. They lowered my dose a month again because my tsh was .014 even tho my t3 and t 4 was normal. I do feel much better but not really seeing any weight loss and still have so much fluid. I'm hoping the NAC will help. I'm also taking B vitamins. All my other labs were normal before they lowered my meds. My next labs are not till end of January.

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You may have to look at how you can convince them to go back to the earlier dose. There is research which suggests that as long as t3/t4 are in range your tsh is less important if you're feeling better and have no symptoms of overmedication.

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Apparently low iron/ferritin can also cause fluid retention.

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My daugther has got hypothiroidism. Under a continuous stress at work long hours which put her in a situation to take a lot of medicines , she got a generalised oedema ( legs, belly and face).

She is now normal , her oedema disappeared , by doing the following :

-she -took a long medical leave in order to avoid stress;

-she minimized the number of medicines she took;

-she stayed in bed for approx10-12 hours a day;

-she took for several days spironolactona (a very good diuretic)

-She takes Vitamin C , and B Complex+ E Vitamin and Omega 3.

-she took limphatic massage several days a week and reflexotherapy

-she started a complementary medicine treatment with bioenergy at Dermavital a holistic and complementary medicine clinic;

-she started to take a new medicine called Mesundra which is a fantastic remedy helping the diminution of the oedema in the body;

-she started to take homeopatic treatment to help the strengthening of the cells which helps the diminution of the oedema ";

-she takes Vibracel and Apisan which both are natural supplements helping the revigoration of the cells which strengthen the cells walls and stop the exchange of the fluids between the cells and minimize the oedema;

-she takes Aronia juice and Aronia fresh fruits every day+ other detoxifiants fruits.

After one month of intense actions as above described she is in a very good shape and without any oedema.

PS. Before this month she introduced in her medication T3 imported from Greece (Unipharma) as she was short in having Thybon which was the T3 she used before (imported from Germany). With Thybon she felt fine but when she introduced the Greek T3 her oedema became generalized so she was forced to give up for the time being from T3.

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Unfortunately I can't take a leave of absence from my job among a few other things on that list but will certainly look into some of those natural supplements that you mentioned. Glad to hear your daughter is much better.

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HOw does one go about getting T3 from Greece. thank you found article very interesting, helpful anna

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Martignon48,

You appear to be quite new to the forum and have not filled in any information in your profile.

Do you have a thyroid condition? If so, what medications are you currently taking, and what are your most recent thyroid test results? And do you have a prescription for T3?

Please give some more information about yourself and why you are specifically asking about T3 from Greece.

It would be better to do this by starting a new post of your own, rather than tagging on to someone else's thread.

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Thank you. will do. Hopefully in next few days, away travelling at moment.

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