Does anyone else have a fluid retention problem? - Thyroid UK

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Does anyone else have a fluid retention problem?

MoonbeamXX1 profile image
45 Replies

Hello All

I think I have had an underactive thyroid for decades but it has never been successfully treated; so I am on no medication whatsoever for it or my adrenal issues. Only recently did my blood tests show up a raised TSH and my GP offered me Levo on it's own; which I didn't want to take.

For years now I have been collecting fluid around my body; you could describe my upper body as seeming to have a life jacket shaped retention. But it's also at the bottom of my stomach and sides.

I have googled these symptoms and the possible reasons are all serious life threatening issues; but one search gave hypo as being a possible but rare cause of the retention.

What I would like to ask is; has anyone else had this kind of retention and then had it improve once they got their thyroid under control (if that is ever really possible that is)?

45 Replies
SlowDragon profile image
SlowDragonAdministrator

Do you have any blood test results and ranges you can add

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are common too, especially gluten. So it's important to get antibodies tested.

Many people do well on Levothyroxine. It's certainly easier and cheaper to manage via NHS

You won't know until you try

MoonbeamXX1 profile image
MoonbeamXX1 in reply to SlowDragon

Hello SlowDragon

Thank you for your very informative response.

I have only had comprehensive tests done when I consulted Dr P (twice) and they showed that I was indeed Hypo: what I meant when I said 'I thought I had had the condition for decades'; was that I have presented with most of the more obvious symptoms for decades but regular GP's were of no help since they are so enslaved to blood tests/'normal' ranges etc.

I have kept my old test results but we moved recently and I won't be able to put my hands on them - at least I don't think so but will have a try.

soppysokes profile image
soppysokes

If the tsh is raised and gp has offered a trial of levo it's a personal choice but it maybe a chance for you to see if the fluid retention is linked, which is a real possibility. Again, as already said here you won't know unless you give it a try.

Hope you can find an answer.

MoonbeamXX1 profile image
MoonbeamXX1 in reply to soppysokes

Hello soppysokes

Thank you for trying to help me; all responses are appreciated. I've explained in the other replies why I don't want to try Levo.

soppysokes profile image
soppysokes in reply to MoonbeamXX1

Hi moonbeam having read your responses I can see that you are doubtful that just levo will work for you by 'only addressing part of the problem' but without trying it surely it's hard to be sure either way? It could well be that it would in fact help raise your FT3 very well and thereby fulfill all aspects of your thyroid problem? Then if it doesn't you could move onto ndt or t3. Many do find that levo works better for them than the other choices but it's very individual so can only know if it's tried really.

SlowDragon profile image
SlowDragonAdministrator in reply to MoonbeamXX1

The vast majority, even if on Liothyronine, still take Levothyroxine as well. It's an extremely small percentage that take just Liothyronine.

Would really suggest trying Levo, plus monitoring and supplementing vitamins if necessary FIRST.

Not everyone gets on well with Liothyronine. It's not a magic wand.

Judithdalston profile image
Judithdalston

If your Gp thinks your TSH level is high, I personally would think about getting your Thyroid treated, but by being aware of all the great advice you can find on this forum re ideal vitamins/ mineral levels etc, automimmune antibodies, appropriate blood tests ( unfortunately not really available on NHS) etc. I believe Dr Lowe ( whose archive you should be able to find on Thyroid Uk site) thought T3 would help reduce water retention in hypothyroid suffers ; I am hoping that some water retention around my knees and lower stomach, might go when I get my correct dose of T3 to optimum level.

MoonbeamXX1 profile image
MoonbeamXX1 in reply to Judithdalston

Thank you Judithdaltson for responding

I once considered going to see Professor John Studd (the famous hormone specialist who also fairly famously cured Denise Welch's long standing depression) and asked him the same question I have asked above. He didn't really relate fluid retention to menopause/hormone dysfunction; which is saying something when you consider his decades of experience.

But even Professors aren't infallible so I asked on here....

Can I ask who is proscribing you T3 please?

Judithdalston profile image
Judithdalston in reply to MoonbeamXX1

I am getting it privately, but I'd perhaps start the process of getting Thyroid sorted by going thru GP rather than straight into T3 without any medical support. Have a look thru Dr Lowe's archive, I find the following a useful place to start ( ignore fibromyalgia bit) as it has an index at top of the page, tho you might have to search about re T3 and water retention, I'm pretty sure I read it in there somewhere!

Http://drlowe.com/QandA/askdrlowe/whatisfm.htm

MoonbeamXX1 profile image
MoonbeamXX1 in reply to Judithdalston

Hello

I would very much appreciate you pm-ing me and thank you for the link.

Angel_of_the_North profile image
Angel_of_the_North in reply to MoonbeamXX1

Is it fluid or myxoedema? If TSH is high enough for an NHS GP to think you are hypo, you are very hypo and that can result in congestive heart disease, which does cause fluid retention. Why not try the levo? You can always buy your own T3 or NDT if it doesn't suit you.

MoonbeamXX1 profile image
MoonbeamXX1 in reply to Angel_of_the_North

Hello

Thank you for trying to help.

I think I have both types of retention. I also have a problem (probably phobia is a more accurate description) of taking synthetic drugs. I'm usually alright if something is natural but drugs cause me huge anxiety. This will probably sound pathetic to people who don't have a problem but so do phobias with say, balloons.

Angel_of_the_North profile image
Angel_of_the_North in reply to MoonbeamXX1

I don't like eyes (even pictures of eyes)! I remember diogenes saying that levo is identical in composition to the T4 your body produces, if that's any help. If you get the levo, even if you don't take it, it means that all your other prescriptions are free as you are hypo, which could be useful. Then you can buy your own NDT, which is as natural as a tablet or capsule can be.

MoonbeamXX1 profile image
MoonbeamXX1 in reply to Angel_of_the_North

Is Diogenes a person on here? How do you manage talking to people; if you don't mind me asking? Do you just avoid looking into their eyes?

I think I would be okay with the NDT but it sounds as if it's not easy nor cheap to source.

Angel_of_the_North profile image
Angel_of_the_North in reply to MoonbeamXX1

Diogenes is a medical researcher on here. I just don't look at eyes - just a glance is OK. Actually, I don't even like talking about them... NDT from Thailand is fairly cheap

Mamapea1 profile image
Mamapea1 in reply to MoonbeamXX1

Moonbeam ~ your phobia does not sound pathetic at all, most people have something they prefer to avoid, at least. Perhaps if more people had your particular phobia, they wouldn't make themselves ill by over consumption of Big Pharma drugs.

It only becomes seriously problematic when bodily functions go awry, and supplements or hormone replacements become essential for regaining our health. I sympathise with you ~ although I strongly dislike taking medications, in no way is it a problem on the level you experience it.

I can only make the pathetic (and probably annoying suggestion) that you try as hard as possible to overcome your fear and at least try to get started on NDT ~ I realise this is no mean feat, and wish you the very best of luck with whatever you decide. xx

MoonbeamXX1 profile image
MoonbeamXX1 in reply to Mamapea1

Thank you for your kindness Mamapea1 - it is appreciated.

I don't know what I am going to do and when I am like that; I go back to putting my head in the sand and do nothing.The Levo might help me as has been discussed but it will possibly be counterbalanced by the level of fear I will experience trying to take the things and waiting to 'see what happens'.

Mamapea1 profile image
Mamapea1 in reply to MoonbeamXX1

Your problem, it seems to me, is compounded by the sad reality that you have probably been hypothyroid for some time and like many of us, have suffered from very poor advice and recognition.

In an ideal world, your condition would have been firstly acknowledged, and after a period of careful counselling, slow and steady natural thyroid replacement would have been prescribed, with continued support if required from said, by now, trusted counsellor, until you felt reassured about the meds.

However, in the real world, unless you catch the unicorn endo, most of us are chasing, all you can hope for is ordering your own NDT and taking advice and support from members on here.

It's a difficult road for you ~ compounded by the fact the hypothyroidism, by nature, will increase your anxiety re meds, and everything else! A catch 22 and a vicious circle😨. You will get support from here, whatever you decide. 🌹🐝 xx

MoonbeamXX1 profile image
MoonbeamXX1 in reply to Mamapea1

Thank you again for trying to help and being so supportive.

fortunata profile image
fortunata in reply to MoonbeamXX1

I take 60mcgs of Liothyronine only a day. When I was on Levothyroxine, my ankles and fingers were swollen and stiff. This disappeared once I began to take T3. It’s not a magic wand but it does work for some people. It certainly worked for me.

MoonbeamXX1 profile image
MoonbeamXX1 in reply to fortunata

Hello fortunata

I'm pleased to hear that taking only T3 has worked for you; did you decide on this course of action by yourself or did someone advise you?

fortunata profile image
fortunata in reply to MoonbeamXX1

I decided to try it for myself. I was really worried because I wasn’t doing it under the care of a doctor but I took it slowly and cautiously. Now I’m prescribed it so it’s much easier.

MoonbeamXX1 profile image
MoonbeamXX1 in reply to fortunata

So was it a case of telling your doctor that you had improved on it; so then they agreed to prescribe it for you?

fortunata profile image
fortunata in reply to MoonbeamXX1

No. I told them for three years that I thought I had a conversion problem because, no matter how high they pushed my dose of Levo (up to 200mcgs a day) I just felt sicker and sicker. I was in pain all the time, swollen like a balloon and had a weight gain of 14 pounds, which is a lot when I only weighed 137 pounds and was a fit, long distance walker and rock climber. When they did nothing, I bit the bullet and ordered Lio from Mexico. Within a couple of weeks, I felt as if I’d come back to life. The two bald chunks at the front of my head have now grown back and I’ve lost the weight, although it’s been a long, slow process. I paid for a private blood test that shows I have a DIO2 conversion problem. This also showed up in a slightly different way in the 23andme tests I had done. I took the printout of the tests to the doc who (at long last!!) referred me to an endo. He was very sympathetic and is willing to prescribe me 60mcgs of T3 a day. I have been on it for almost five years in total now.

MoonbeamXX1 profile image
MoonbeamXX1 in reply to fortunata

Goodness me - literally the lengths you have to go to to force GP's to listen to you. I'm so pleased you had the courage to help yourself and not only be validated but now have your medication proscribed.

healthymarge profile image
healthymarge

I've had swelling around my knees and stomach for past year and more recently heart skipping a beat. This has showed up after a stress test with a cardiologist.On Eltroxin for past 25 years with intermittent bouts of fatigue heavy legs etc .Last TSH was 0.26 so GP told me to reduce from 100 to 75. Still having fluttering feeling and anxiety and confused if it's a heart or thyroid problem as I know they are connected.

MoonbeamXX1 profile image
MoonbeamXX1 in reply to healthymarge

Hello healthymarge

Thanks for trying to help. I associate anxiety with adrenal problems which go hand in hand with hypo; I used to suffer from feeling jittery and anxious all the time. Dr P proscribed adrenal supplements (they have to be proscribed by a qualified doctor or they did then) and I can categorically say that they are the only supplement/medication that I have ever taken that has worked for me.

I have noticed though on Amazon reviews: people just taking them willy nilly and getting some frightening symptoms which is why they should be carefully introduced by someone qualified.

I obviously don't know if they might be the answer to your anxiety but it's all information for you to research if you want.

Saw Dr on Wednesday about fluid retention although I already take Frusemide as I have Afib as well as an under active thyroid. He doubled my Frusemide and ordered a blood test for kidney function and thyroid. Get results this afternoon.

Sometimes I look 7 months pregnant with fluid, not a good look at 74! He was mentioning ascites (?) which is scary.

D

MoonbeamXX1 profile image
MoonbeamXX1 in reply to

Hi Hylda

Thank you for responding. I found ascites too as a possible cause, which you are right, is truly scary. I haven't had a blood test for a while but with the exception of my TSH; everything 'seemed to be okay' (the standard comment from any health professional when relaying your blood test results) and the liver function was on there.

eeng profile image
eeng

Fluid retention is a common symptom of hypothyroidism. Hypothyroidism used to be called myxodema, odema referring I believe to swelling caused by fluid retention. A study done recently by people analysing the tissue from carpal tunnel operations found that the tissue of patients with hypothyroidism was suffused with fluid. There's nothing rare about it.

MoonbeamXX1 profile image
MoonbeamXX1 in reply to eeng

Hello eeng

Thank you responding. It is a fact that hypo can bloat cells with a watery substance and that is why most of us cannot pinch our skin without pinching what seems to be a wedge of fat beneath it. Try it; see if you can actually just pinch your actual skin - tops of arms are a good place to try.

Broda Barnes (a founding father on treating hypo) once did an autopsy on a woman who was severely bloated all over her body and he expected when he cut through her skin; that water or fluid would gush out. But it didn't; no fluid gushed out but her cells were full of a watery substance.

Because that situation is all over my body pretty much; the fluid retention I am referring to is different and more like if someone had poured water under your skin.

silverfox7 profile image
silverfox7

I would change you mind about trying Levo. The fluid is caused by being hypo so go back to your GP and thank you for his suggested and that advice for other thyroid people think you should try it and also ask for a copy of your results and ranges. Ranges are important as they differ from lab to lab. Also it's important to keep copies of your results then you can tell us if you need help understanding them or to help us see the situation if you need general help. Many have not problems with Alecia. I didn't for about 25 years and remember that this is a forum for people with problem and people you feel rgeirxexperience can help others many many are on Levo but don't join becausextge are so busy enjoying life.

MoonbeamXX1 profile image
MoonbeamXX1 in reply to silverfox7

That's a very good point silverfox7 - that the people who are feeling much better aren't on here but out there enjoying themselves.

Hoorah for anyone who feels better......

SlowDragon profile image
SlowDragonAdministrator in reply to MoonbeamXX1

There are just over 2.2 million people in the UK on Levothyroxine. Thankfully the majority are fine and not on this forum saying they are unwell. They are out there getting on with life.

It's only somewhere between 10-20% who either struggle right from the start, or who do well initially on Levothyroxine, but eventually might also need addition of small dose of T3

MoonbeamXX1 profile image
MoonbeamXX1 in reply to SlowDragon

With respect; where do you get your statistics from? Can they be trusted?

I have read about a great many people - not on here - who are only having their T4 treated and are still feeling pretty bad but have doctors who won't entertain treating their condition with T3.

Mamapea1 profile image
Mamapea1

If you think you've been hypo for decades then you probably have. You have perhaps tried the dreaded Levo and it hasn't worked for you ~ there are many on here with that problem, myself included! I have had an amazing reduction around my abdomen, which was my main problematic area since I began a trial of T3 only, although tbh it wasn't my worst symptom.

Many members have had successful treatment with NDT ~ perhaps that would be more suitable for you. GPs are useless with thyroid problems and many are left to suffer ~ as you can see by this forum, but there are many knowledgeable members to help. Good luck with it all. 💕 x

MoonbeamXX1 profile image
MoonbeamXX1 in reply to Mamapea1

Hello Mamapea1

Thank you for responding. No I haven't tried Levo because I don't want to treat only half the problem; I'm well aware that many people taking it are still not well because their T3 issue is not being addressed. If I'm going to take anything for my hypo; it will be NDT.

I have been condescended to and dismissed, over decades, by more GP's than I can remember because up until my last blood tests where the TSH was raised; 'every thing hypo was in the normal range' - so read 'there is nothing wrong with you but I can give you some anti-depressants....'.

Can I ask who agreed to proscribe you a trial of T3 only please?

Mamapea1 profile image
Mamapea1

Unfortunately, I ended up having to prescribe it to myself, and with the kind support of other members, I have bought it myself from abroad. I too, have had poor treatment from GPs and so called 'specialists' for the last 25 years. I could wallpaper my house with the useless prescriptions I've been given ~ many of them antidepressants😳.

I have begged and pleaded with my useless GP et al for so long, and became so ill ~ literally on my last legs! It was a happy, life changing day for me when I found this forum, and all it's lovely members. Finally I had found people to listen and understand. So you are among friends here, as many of us have had poor treatment and you will get excellent advice.

I haven't the funds available for private treatment, as this illness has taken it's toll on my savings as well as my life, so private Drs are out of the question for me. Some people seem to do well on Levo, but it was like poison for me, I must admit. I may try NDT myself if T3 doesn't work, but I have had many improvements so far, so I'm more than happy to continue with it for now.😊

It's extremely difficult to get NDT prescribed as far as I know, so you may well also have to go it alone. Not an ideal situation, but preferable to suffering endlessly with poorly trained, dismissive Drs who are more concerned with big pharma incentives than the well being of their patients! I do hope you get something sorted out soon, no treatment at all is not really an option for very long, and it sounds like you've been a victim of the useless blood tests, and are now quite poorly. Good luck with it all. x

MoonbeamXX1 profile image
MoonbeamXX1 in reply to Mamapea1

Hello and thank you for such a detailed response again

I'm sorry that you cannot afford to go the private route but there are no guarantees even with that because I went private twice and was not substantially helped.

Was it your specific T3 blood results that gave you the confidence to try it on its own?

Mamapea1 profile image
Mamapea1

Moonbeam, no not at all, I have taken large doses of Levo ~ 200, 225,250, and even 300mcg, all to no avail as far as symptoms were concerned. Serum results stayed 'in range' (T4 went a bit high on the 300mcg) but I still had all the symptoms😳. Levo gave me a horrible poisoned feeling, and it was my choice to reduce to 200mcg, ~ with no output at all from my thyroid, I had to take it to stay alive.

I feel much better so far on the T3 alone, but by no means out of the woods yet. I have had to learn a lot and take control of my own health, there were no other options, and I'm very glad I did. Unfortunately, for some of us sad souls, those blood tests mean nothing, and we are left suffering, with Drs saying "results are normal ~ next!" And yes, I believe in many cases, private consultations can be just as disappointing ~ it's the luck of the draw, and the odds aren't good! x

Mamapea1 profile image
Mamapea1

Moonbeam, it was actually taking advice from members on this forum that gave me the confidence to try alternative meds and order them myself. I would never have had the knowledge or nerve to do it otherwise.

I also have improved so much just by getting all my vitamins and minerals optimal, as GP has always considered them 'in range' when they clearly weren't ~ I discovered many horrors when I recently acquired some of my medical notes. That info was kindly provided by SeasideSusie et al, and proved life changing in itself!

I have been damaged by depleted Vit D, B12, etc., some GPs are not just useless, they're actually dangerous if you stay with them long enough, especially where thyroid issues are concerned. I'm better off out of it and learning from studies and members on here ~ perhaps you will too. x

PS. My GP would always refuse to test T3, but on the rare occasion I had a test, it was always a bit low range wise, but TSH rules, as you know.😕

Tia- profile image
Tia-

Hi Moonbeam,

Have you tried Epsom Salts in your bathwater or footbath? Epsom salts remove excess water retention in the body & there is heaps of information on the web about them. Give it a try & let us know how you get on. Tia-

ACP59 profile image
ACP59 in reply to Tia-

Hello sorry for hijacking your conversation but does this really work for water retention !

MoonbeamXX1 profile image
MoonbeamXX1

Hello Tia

I haven't heard of that suggestion so will read up about it - thank you for trying to help.

Tia- profile image
Tia- in reply to MoonbeamXX1

Your welcome!

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