Yes, I have oedema

Yes, I have oedema

My GP has agreed with me that my legs look like a cartoon and I am waiting to hear from my private endio (he is calling around 7). In the meantime here is a cut and paste jobby of an article I saw on the board:

In hypothyroidism there is a strong tendency for your body to produce excess mucin - basically a jelly-like substance (chemically - glycosaminoglycans, hyaluronic acid, etc.). These build up in your tissue and retain water.

The resulting swelling - oedema - is non-pitting and if you press with finger tips, it pushes straight back. There are only a few causes of this type of non-pitting oedema and hypothyroidism is probably the top of the list.

The word myxoedema describes this swelling with mucin - and is a term quite often used for hypothyroidism itself because it is such a distinctive feature.

Only proper treatment with adequate thyroid hormone resolves this. And it can take quite a long time for it all to return to normal.

Did any of you have water tablets and how quickly did the swelling go down please?


Kate x

15 Replies

  • I did indeed have oedema -all my sympathy to you as it is not pleasant. I did take tablets to reduce this for a short while -but I wasn't keen -I preferred to get the treatment right for my thyroid. If my dose is too low the oedema starts to return -so I treat it is as a warning sign. So the trouble with water tablets is that they can mask the symptoms.

    How long did it take to go? Well it wasn't straight forward -initially it took a while -then it kept coming and going until i had not only the right dose but the right type of medication with all the vitamins and mineral supplements that I needed in place. ( if you haven't already it is really worth checking out your B12, folate, iron & vit D levels -as its common in hypothroidims for these to be low and of course this iwll effect the absorption or uptake of your thyroid hormones)

    i find even now that if I am needing an increase ( goes up and down with the weather!) then one of the early signs is my ankles or feet starting to puff up. x

  • thank you - yes I am on D3 - 5mg folic, iron and b12....the private edio did thorough tests including antibodies and adrenals...xx

  • Taking armour thyroid reduced my oedema as it contains the hormones T1,T2 and T3, which did the job without water tablets.I was a size 10 originally and expanded into a jolly size 20. A man in a passing car even called out 'fatty' (fingers up).I have now settled to an OK size 14.

  • Thanks Janjan - how rude! Hope you flipped him the bird :)

  • I was given water tablets for mine. They made the problem worse, I wouldn't recommend them! Besides, the problem is far more complicated than just water in equalling water out. There's salt levels to take into consideration. I find that if I don't get enough salt, my legs and feet swell up like balloons in a very short time. And it takes a long time for the swelling to go down again. The only solution I know is to get more salt.

    Hugs, Grey

  • Thanks Greygoose - how do I get salt? having just had a cardiac arrest at Christmas, I have been cutting it out! Hey ho....

  • Ummm... how do you get salt.... Well, put it on your chips! lol No, sorry, just joking. I just use sea salt and I put a little in the bottle of water I'm drinking. Or, I add a little to a glass of orange juice at bed time.

    Yeah, the British are terrified of salt at the moment. I'm sure you're all going to go down with adrenal failiure some time soon. Actually the heart needs salt, as do the adrenals. And my understanding is that only a very small percentage of people have high blood pressure because of high salt intake. But, please, don't just take my word for it, do your own research because I would hate to be the cause of you having another cardiac arrest if I'm wrong - and it has been known!

    I would suggest that if you decide to go down that route, start slowly, just a tiny pinch and see how it goes. But as I said, do do your own research. Try reading Dr Lowe, he has quite a bit to say about salt - he even managed to convince one of my doctors who was demanding that I cut out salt! But Dr D in Paris recommended that I drink a certain type of water that we have here in France that is very salty. Takes a bit of getting used to but I liked it in the end.

  • Thanks - right - salt here i come :)

  • Which water is that?


  • That's a very good question, and had I remembered the name at the time of writing, I would have given it. lol But my memory... It's like catching soap in the bath. I'll have a look next time I go shopping and get back to you.

  • So the endio called at 8pm and has asked me to go and see him at the London Clinic at 9am tomorrow - (me and the Duke of Edinburgh eh!) and has asked me to revert to the 75micro for now.

    I asked why and he said as my symptoms were seemingly triggered by going up to the higher dose on alternate days. It is true that I was feeling better on 75 except for my burny leg muscles climbing steps.... and looking back, I was fab compared to more tomorrow. I will ask about my iron levels.

    He wants to put a probe on my tummy?

    Well at least I have all of John Lewis fashion floors available to me tomorrow.

    Kate x

  • Hi One thing to bear in mind, is with oedema ( or without it) important to drink plenty, import for everyone, especially on diuretics. Also too mucbh sodium / dsalt makes it worse. Your sodium should always be in range but not too high. hypertension ( high BP) is often a symptom of too much sodium. Make sure you have a test for U`s and E`s ( kidney function ) the only true way to discover what is happening. Also you may have ascites, swollen tum! Fluid there is horrible, I well know. The best way of looking for fresh Oedema and ascites or worsening is by weighing your self every am, same time, etc. If it goes up by 2 to 3 pounds over night, that is severe and diuretics need increasing.

    I hope this helps,


    I think you know but to reply to a post, you need to click on "Reply to this" under that post, so that we know,

  • A link from Dr Lowe

  • I have Lipoedema as well as hypothyroidism. You could research Lipoedema UK to find out more. It is a distinct swelling of mainly lower limbs which is currently not cured but can be helped. (It is currently Lipoedema Month and an open topped bus will be touring medical sites in London on Tuesday!) Worth a look, perhaps?

  • as my lady--and me-- have anappointment at barts on Tuesday ----- do you know if the bus will be visiting barts and if so what times and when it will be ....... many thanks in advance for your help .....alan

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