Fluid retention hypothyroidism - how to reduce

[McPammy]

Hi

I have Hashimoto Disease and converting poorly T4 to T3. I’ve been very unwell for 12 months as was only on T4 Levothyroxine. Now been prescribed privately T3 medication which has been like a miracle cure for me.

Last year my TSH went to 29 (0.35-5.50). My T4 was still in range at 11(7.86-14.41). My T3 was not checked by hospital.

Now my results after T3 7 weeks are:

TSH 0.46 (0.35-5.50)

T4 11.4 (7.86-14.41)

T3 5.4 (3.7-6.0) a previous test = 3.7 without T3 med

From TSH at 29 I put on 2st and started with visible water retention I could see fluid build up especially on the inside on my knees below and above. Maybe it’s all over my body but this is were I can see it the most. I’ve now been prescribed T3 thankfully and I am so so much better. I take 5mcg twice a day with 75mcg Levothyroxine. I’ve been on T3 for 7 weeks now. I had some weight loss the first 4 weeks but the fluid retention is still there. I was thinking of asking my GP for water tablets. I just wanted to check in with the very helpful people on here to see if they’ve had this problem and how you managed to get rid if the fluid. I’ve been out walking everyday virtually since I started T3 but still no shift. I’m now very active and previously I could hardly walk or sit up

Any advice I would be truly grateful.

Many thanks

Pam 👍

[SeasideSusie Remembering]

McPammy

It's good to see the T3 is working for you

As far as asking for water tablets go, give this some serious consideration. Diuretics cause electrolyte imbalances - they cause the kidneys to boost elimination of sodium, potassium and water. Regular use can cause fluid loss and low potassium level. Before prescribing, GPs are supposed to check levels and monitor them regularly whilst the diuretic is prescribed.

It was suggested that I take Indapamide (diuretic) and when I asked why I was told "for your puffy ankles" - there was more to it but that is all that was mentioned. No mention was made of testing my levels before or that regular monitoring would take place. This is typical of my surgery - if you don't know about it and ask for it then it is not mentioned or offered, others may be much better at this sort of thing.

I declined the prescription and said I'd rather take something natural, and the Advanced Nurse Practioner I was seeing - who is open to this sort of discussion - was happy for me to try this and we agreed on Dandelion Leaf which doesn't deplete the body of electrolytes.

So if it's purely that you want to try and eliminate fluid, you might want to look into a more natural way first.

[greygoose in reply to SeasideSusie]

And, did the dandelion leaf work? Water retention is my biggest problem.

[spongecat in reply to greygoose]

....and for me too. I hate it.

[SeasideSusie Remembering in reply to greygoose]

I think it's working to a degree. It certainly doesn't make you want to pee for the whole of the UK like my friend does who takes a diuretic.

When it was first mentioned that I should be prescribed Indapamide (and it was all part and parcel of Cardiology avoiding granting me an appointment which was requested twice by the surgery, the hospital only wanted to do tests and decided what the problem was from those rather than a doctor actually see me to discuss the whole situation), it was during a very hot period here and I expect many people suffer from swollen feet when it's hot. Mine are still puffy but not as bad as back then, but then again it's not as hot as then. So I can't say with absolute certainty that it's as effective as a diuretic, but it's keeping things in check, it's not got worse, seems to be a bit better, and it's not causing the problems a diuretic would.

Apparently it has to be the leaf, not the root (according to what I read), and there aren't so many leaf supplements as there are root supplements. I don't like any kind of tea so avoided dandelion tea, I think I started with a tincture but long term that was going to be expensive. I managed to find a supplement at a reasonable price which is additive free, powdered dandelion leaf in capsule form by BioHealth.

[greygoose in reply to SeasideSusie]

Thank you. That's not really very encouraging, is it! lol

[SeasideSusie Remembering in reply to greygoose]

Possibly not, but one can only try, and for me, as I don't have a big water retention problem, it's better than Indapamide.

[greygoose in reply to SeasideSusie]

Indeed. And I've tried so many of these formulas - they often include dandelion leaf - but I think they're aimed more at people with poor circulation, than people who swell up due to hypothyroidism. So, they don't work very well. I think I need to look more at the lymphatic system…

[Hidden in reply to greygoose]

I take a diuretic called Spiranalactone as I have fluid buildup because of my heart. It is one of a range of potassium sparing diuretics. I do have yearly blood checks for my kidneys and liver.

Di

[McPammy in reply to Hidden]

Hi.

Maybe this would be a better option then. I will speak with my GP. I can always stop them if I don’t feel good I guess.

[Hidden in reply to McPammy]

I’ve had no problems with it.

[greygoose in reply to Hidden]

Yes, but I'd have to see a doctor to get that prescribed, and my main aim in life is to avoid doctors as much as is humanly possible.

[Hidden in reply to greygoose]

Needs must at times! Looking 8 months pregnant at 75 is a bit off. 😂

[greygoose in reply to Hidden]

lol I'll think about it.

[Hidden in reply to greygoose]

Me looking pregnant not you!!

[greygoose in reply to Hidden]

Yes, I got that. My water retention is not in the right place for a pregnancy.

[Hidden in reply to greygoose]

and mine grey goose. I am sure a study of all the people who never visit doctors was done it would show that they live much longer. I have caved in and seen some last week. Ended being treated for a non existant DVT and antibiotics for cellulitus which I am not going to take again. I came to the conclusion half way through the course that all the old ladies I have seen with puffly legs and chronic cellulitus probably have an antibiotic resistant infection set in. I am getting some cinnamon oil incase it happens again. I am not going to see therapists either, esoteric clap trap. If I need to talk to someone there are plenty of pubs around.

[greygoose in reply to Hidden]

Good for you!

Tell me more about cinnamon oil. What does that do?

[Hidden in reply to greygoose]

Kills bugs apparently, out performs most antibiotics.

[greygoose in reply to Hidden]

Oh, right. And you rub it on or swallow it?

[Hidden in reply to greygoose]

I think it depends where the infection is. I need to read up some more myself on it. I have acne so will be trying it out on some of that first. Back to fluid retention I noticed that my childs hands are all puffed up. He has been referred for obesity management, not something I asked for and dreading appointments but I looked at his hands the other dayand thought my child is not fat he is swollen poor boy. There is no way if you cut open those fingers you would find a store of fat in them, his poor little hands. I looked on line to see if I could see an autopsy of an obese person the other week. I just wonder whats actually inside, more merkin than the sort of layers of fat you might see on a side of pork I imagine.

[greygoose in reply to Hidden]

I feel the same when I look at my granddaughter. It's so sad.

[Smelly12 in reply to greygoose]

Snap me too I'm to old to my trust in them. All he says getting old now. Lol

[Hidden in reply to SeasideSusie]

Have you tried Spiranalactone which is a potassium sparing diuretic?

[McPammy in reply to SeasideSusie]

Hi.

Yes, serious consideration indeed, the reason I thought I’d ask to see what others have done to get rid. I was on Levothyroxine for 11 years before it all went crazy last year for me. Never had fluid build up in parts of my body before. But then again I’ve never been as terribly ill as I was last year either. I did buy some dandelion tincture that cost £10 last week. I thought I’d ask before I begun as I don’t want my equilibrium messing up now I feel good again. My ferritin was low too at 20. So yesterday I’ve started a course of medication for that. It keeps dropping I can’t hold on to it. Maybe as I don’t eat meat. I think I’ll make an appointment with my GP also and see what he says. I was hoping that starting with T3 it may have shown signs of reducing by now in my 7th week.

Thank you for your valued support and taking time to reply.

Pam x

[SlowDragon Administrator]

Most of this excess is likely mucin not water

It will slowly go, but you can't expect miracles over night.

If you over exercise you may actually lower FT3. Don't over do it

Making sure vitamin D, folate, ferritin and B12 are optimal for thyroid hormones to work at their best

[McPammy in reply to SlowDragon]

Thanks Slowdragon.

I’m pacing myself but was just hoping this fluid retention would reduce now if only a little.

Do you know why we get fluid build up when under medicated please?

Thanks

Pam

[SlowDragon Administrator in reply to McPammy]

Here's an explanation

tpauk.com/main/article/myxo...

I have been on T3 two years. Arms significantly improved. Legs still some way to go.

[Hidden]

It is very early days Mcpammy and I imagine there might still be some ups and downs over time until you are as well as you can be. You leg swelling sound like prebital mixodema it disappears about 50% of the time on its own, best to optimise treatment. Sometimes it is permanent I am afraid. I have had mine for a couple of years. I dont think directics would help, they tend to wash a lot of stuff out of the body including hormones, you might end up worse. Take things steady.

[McPammy in reply to Hidden]

Hi Mandyjane,

Thank you so much for your reply. I’ve never heard of prebital myxedema before. I’ll look this up. I’ve had thyroid issues for 12 years but never as bad as last year. I noticed my legs swelling around my knee area. The swelling is actually in both my legs from my ankles up. I can see a clear line where it begins above my ankles. I hate it. I’m so glad to be well again I just cannot explain. But I do have a few issues with weakness still and again this is mainly around my knees. That old saying she’s gone weak at the knees is me.

Thanks again you’re very kind.

Pam

[SlowDragon Administrator in reply to McPammy]

Yes....my leg swelling very similar, particularly just below knee

Over two stone in weight lost.....but only small improvements in legs ....so far

[McPammy in reply to SlowDragon]

Excellent to lose 2st. Can I ask if you had to try to lose it or did it come off naturally when you started T3. How long did it take you. I’ve put on 2st in one year. Never in my life has that happened before. None of my clothes fit now. I started losing weight in the first 5 weeks 8lbs. It’s stuck at that now. No loss in 2 weeks. I don’t feel as hungry as I use to on T4 Ned alone. So I’m not eating as much. I’m also moving now and I’m much more physical. I think in the past I use to think I was hungry with low energy like it was natural to want food at that point but it was my low T3 and low energy that was my problem I believe.

I’m so pleased for you. I know weight is the last thing on your mind when you are so unwell. But now I’m much better I just want this weight to go and my clothes to fit me.

[SlowDragon Administrator in reply to McPammy]

Definitely Not easily .....but slow and steady

Strictly gluten free diet, strictly soya free including soya lecithin.

low carb, no potatoes, no rice, no pasta, no cakes, biscuits etc etc (limited chocolate)

Plenty of good fats, lots of protein and fresh and wide variety of vegetables and fruit

Biggest difference...being able to walk and therefore exercise

[McPammy in reply to SlowDragon]

Thank you. Slow n steady then. I do eat healthily My dessert these days is an orange, I can’t stop eating them. I will have to have an eating plan and stick to it. I’m pretty good at being focused.

Thank you and very well done. Keep up the good work. 👍.

Pam 👍

[Hidden]

Has anybody tried regular saunas. I have bought one for my home. Would it help I wonder?

[Bertwills]

I have had some success using the supplement NAC. I buy one from Amazon. Google it and read reviews on Amazon. It’s definitely slimmed my face down and loosened the very tight skin on my legs and arms. Done nothing obvious for my stomach area though, unfortunately!

[McPammy in reply to Bertwills]

Hi.

Thank you for this suggestion. I will definitely looked into it this morning.

Hope you’re ok and on a level.

P x

[Afaghieh]

Hi I have Hypo, recently i was put on Amlodipine for my BP though taking half a tab put on weight 2.5kg my knees were like rugby ball unable to walk. Eventually after several visits I was put on Furosemide which I was told it's temporary. My calf measured 36cm now they are 34 I have not recovered fully but has been helpful.

[Hidden in reply to Afaghieh]

I blew up like a football on Amlodipine now on Spiranalactone.

[Afaghieh in reply to Hidden]

Thanks Hylda I will look it up. I seem to be unfortunate. Nearly died on Ramipril.

[McPammy in reply to Afaghieh]

Oh no that sounds really not good for you. I hope you are able to walk better now and enjoy life a bit better. I will speak with my GP next week about this medication.

Thank you for taking time to reply

Pam

[Afaghieh in reply to McPammy]

Thanks i am still walking with stick but at least not crawling on my knees to the bathroom.all the best.

[McPammy in reply to Afaghieh]

Are you on T3? As I was like that for nearly a year. Once T3 was prescribed I’m back to normal. Never realised how brilliant normal is until now.

[Afaghieh in reply to McPammy]

Hi Yes I am on t3 but my weight is creeping up.

[McPammy in reply to Afaghieh]

Have you had your reverse T3 checked out. RT3 makes you gain weight

[Afaghieh in reply to McPammy]

Hi No it's difficult to ask for tests. it took me ages to make my practice to do t3 they were constantly doing the tsh only.

Last time I had t3, tsh and free t4 I feel on the blood form it should say what medication we are on so that Lab can do the appropriate tests.

[Hidden in reply to McPammy]

Can you have reverset3 on t3 only

[Hidden]

Oh no. Hope all well now. Spiranalactone is good because it doesn’t deplete the potassium in the body.

[Afaghieh in reply to Hidden]

Thanks Hylda i see my GP next week hope he won't mind my suggestion. You never know once before i produced a print out about a medication I was given to my previous GP which was antagonistic with my thyroxine she moved me to some one else. You can't win these days!

[McPammy]

Hi. Thank you for taking time to reply to me. I do have gluten free diet. I just thought that now I have optimal thyroid results after starting T3 several weeks ago it may reduce but hadn’t. Maybe I’ll have to keep in trying.