Any advice please about my swollen legs. look like tree trunks. have had big legs but now they feel tight, fluid.
swollen legs: Any advice please about my swollen... - Thyroid UK
swollen legs
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lesbud1
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You should see your Doctor because it sounds like you are retaining water in your legs. When I was ill last year my ankles were very swollen. I think when your thyroid is not working properly it affects your whole body. As well as having swollen ankles I had blurred vision, hair loss, night sweats, nails lifting from nail beds, weight gain and I was tired all the time. I felt very depressed and didn't leave the house or drive my car ... infact I was a recluse. This disease destroys your life in my honest opinion. At the moment I am in remission and apart from not sleeping as long as a should I feel great. I have lost a lot of weight and have gone from a size 14 to a size 10. when my ex consultant told me my depression wasn't caused by my thyroid and I needed counseling I walked out on him because of course it does! When your feeling ill you will feel depressed and miserable. Sorry to ramble on but I do feel strongly about this disease and how the medical profession treat us.
Goodness me! I’m very glad to hear he is your EX consultant. What an idiot.
I can’t understand why some doctors seem to want to treat you for anything other than actually fix your thyroid - especially when they have chosen to work in that field of medicine.
Never apologise for rambling as you call it, because we all get what you are going through.
Your depression is caused because of what you are going through and that no one is listening to you, because no one understands or wants to. So I am glad you have ditched your Consultant, as he does not know what he is talking about.
I have no faith in so called Professionals. The only way they would understand what it is like to have a thyroid condition, is to experience it themselves and I bet there are very few of those around. Most Professionals just look at you with a blank expression and definitely do not have a clue. Even had one Nurse say to me, "You need to take responsibility for your actions!" If I had had the strength, I might have given her a clout so to speak!
I always say if I had a penny for every time, I have seen someone raise their eye brows when "thyroid" is mentioned, then I would be a very rich woman!
I hope you can get a second opinion and some help.
Take care 
As far as I know there are 3 possible causes assuming no clotting: poor kidney function, congestive heart failure, or lymphedema.
Keep your feet elevated, reduce salt to almost none, see physician.
greygoose in reply to
Bad idea to reduce salt. If salt is too low, it can cause water retention, because when the water leaves the body, it takes the salt with it. The body needs salt, so it hangs onto the water. I know this is the reverse of what most people think, but it makes sense to me. Low-salt diets are not good.
See your GP or contact your Consultant and ask for a referal to the Lympthoedema Clinic.
If GP won't refer you then ask for a Medical Consultant referal for diagnosis.
Look up the Lympthoedema Clinic in your area , call and ask for their advice.
When were you for last blood tests with GP?
my GP doesn't to regular bloods as tsh 3.7 last time and she is not interested even though I was on levothyroxine years ago. I will get private bloods done though. thanks
Are you saying that you were on Levothyroxine but are not taking it now?
What was your diagnosis back then?
Levothyroxine is for life.
Edit:
Just seen other replies - you had Levothyroxine stopped. This is crazy. Target Therapeutic level TSH once diagnosed and treatment started is maximum of 2. But most on here say maximum 1. So your last TSH was too high anyway.
I would take a list of symptoms into GP (different GP in the practice if possible ) and insist on a referal to an Endocrinologist.
If refused then ask for full testing : FreeT3, Free T4, T4 and TSH plus he nutrients levels Vitamin D, B12, Folate and Ferritin.
Keep going back to GP till you get proper attention. Also ask for Kidney Function Tests & FBC. Make sure Endocrinologist tests Adrenals first before you re-start Levothyroxine.
Keep some salt in your diet but switch to fine Sea Salt for table & cooking.
I had an overactive thyroid 20yrs ago and had radioiodine and carbimazole then had to be put on levothyroxine but I had a reaction to it in that I had very high BP and protein in my urine and felt very unwell. the doctor then said my bloods where normal anyway so he just stopped it. That was about 15 yrs ago. I have moved a few time so had a few GPs. I have a new GP and she isn't helpful at all. she would be happy to put me on a statin, something for my BP etc but not refer me to the endo. I have had bloods from Medicheck and my antibodies are very high around 400 and my TSH was 3.7 but I might as well be talking to the wall as at least I might get an echo instead of a blank look.
When you press your thumb on your legs at various points does the white depression mark take longer to return to normal? It should be quite obvious if it’s fluid retention (although I think you already know)
Are you saying that if it returns to normal quickly that it is fluid retention or the other way round? So one is fluid retention, what it the other?
The slower the return from the white depression mark to pink (or natural skin tone, I’m white so I don’t know how it goes for darker skin tones) the worse the fluid retention. It’s a rule of thumb rather than an exact science.
With no fluid retention the depression mark usually bounces back in an instant. With fluid retention you can almost see it creeping back to normal from the outside in. HTH 🤗
Not to be confused with the non pitting oedema associated with pretibial myxedema. You can press as hard as you like and it just springs back. If you have pitting oedema more likely to be water balance or circulation issue or reaction to other stimuli.
But that’s rare? (Pretibial Myxedema)
I just remember having a lot of water retention when not adequately medicated and indeed 5kg of it disappeared when I did become properly medicated.
Yes I can understand that. In the initial stages my weight increased by more than two stones before the medication started to get rid of it. I also had pretibial myxedema for a short period but it was confined to the shins only. My hypothyroidism was extreme both tsh and thyroid hormones being not measureable.
Possibly Lympthoedema.
Are you drinking plenty of water?
Are you moving as much as possible?
We cannot tell you what to do, people are saying to see GP, will the go give you a prescription? Probably, look at your lymphatic system? will he want to get to know the root cause? Probably not.
Some say see GP
If I had this I would ask a naturopath or functional nutritionist, where in the country are you?
thanks. I always get swollen legs but these were horrendous. I have been away all week and have been suffering with a chest infection that has made me sleep sitting up. I am now wondering if that has been a significant factor as I am home now and slept laying down now my chest infection is letting me and my legs seem a bit better.
It could be - with chest infections especially if you are wheezy can be extra fluid. I would definitely check with your GP. The extra fluid will be put strain on your heart, because of the extra work it has to do, pumping the fluid around as well.
Hope you feeling better soon.
Maybe try water tablets if it is fluid retention might help to give it a go or try compression socks then obviously if it doesn't work see GP !
Can only get 'water tablets ' from a GP.
You can buy water tablets from Chemist it's worth talking to a pharmacist!
Sorry , I thought you meant prescription diuretics.
Its worth trying I think they are called water balance
Thought you might have meant them.
I would never take them and would not recommend them.
Learned on a recent post that a pharmacist recommended their own brand multivitamins & minerals for a child. Many reasons for not taking them either.
Hi lesbud1,
Unfortunately oedema can be one of the symptoms. I have suffered with it for many years now and I now have to take a diuretic every day for the rest of my life because of it.
Never suffered with it initially (been on meds all my life for under active thyroid) but then I unfortunately got a new GP, who decided she knew best and my hell began. Dramatically reduced my medication and the swelling first started in my left foot/ankle, then leg and eventually on my right side. The weight kept piling on. Never had a weight problem before all this.
If you are due blood reviews, get them done, it could be that you are under medicated. I would not want anyone to go through what I have been through. Ironically, after much ado and many moons later, I am back on my original dose plus T3.
Being under medicated, can cause havoc in every way. I always say, if not happy with a diagnosis, always get a second one.
Hope this helps and good luck
You could be low in potassium and/or sodium. Both need checking, and those are two tests that doctors love to do and do automatically for no good reason. Ask your GP.
SlowDragonAdministrator
How much Levothyroxine are you currently taking and how long on this dose.
When were thyroid and vitamin levels last tested?
Low FT3 can cause mucin to accumulate under skin
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
yes thanks. not on any thyroxine as GP still says bloods still okay. 3.7 tsh highest so far. Have had private bloods and will be having some more soon. My legs always swell and are usually big but this was horrendous but I have had a chest infection and been sleeping upright for a week so that may have contributing as now I am able to sleep flat my legs seem to be reducing. thanks
Looking at previous posts.....
You had RAI so you presumably have zero thyroid function of your own ......in which case TSH should be under 2 and many would need TSH significantly under one
Most important results are FT3 and FT4 plus essential to test vitamin D, folate, B12 and ferritin
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
High cholesterol frequently linked to being hypothyroid.....so you might want to test cholesterol levels ......good argument for starting back on Levothyroxine if cholesterol is high
nhs.uk/conditions/statins/c...
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Come back with new post once you get full test results
thanks. yes my cholesterol is high but she only offered me statins which I will not take. she knows I had RAI and carbimazole years ago but she doesn't seem to think this is significant. I wish I had known more when I had a reaction to levo and insisted that I was put on something else. I just thought the doctor knew what he was doing. obviously not. now I am having to fight the whole way. I asked to see an endo but she said their was not reason. I have shown her that I am def in vit D (25.7) but she said as I was treating myself that was all that was needed and I didn't need another blood test to see if it was working. I am going to get medicheck bloods again soon but just started a new job so not much time lately. the vitamins I have been recommended on here and am taking have helped so much but I feel I should be on thyroxine too. I have antibodies around 400 but once again she doesn't see the significance of that either.
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists
thyroiduk.org.uk/tuk/About_...
You can self refer to an endocrinologist privately if GP refuses
But first get all four vitamins optimal.
Your low vitamins are direct result of being hypothyroid
Which antibodies are high? TPO and/or TG antibodies?
These confirm autoimmune thyroid disease also called Hashimoto's
Are you on strictly gluten free diet.
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Vitamin D was EXTREMELY low
GP should have prescribed LOADING dose and retested after completing the course
Local CCG guidelines
clinox.info/clinical-suppor...
Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Retesting twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
If vitamin D is low, B vitamins may be too. As explained by Dr Gominack
drgominak.com/sleep/vitamin...
healthunlocked.com/thyroidu...
thanks for that. I am taking 8000iu vit D3 /K2 mk7/selenium/B complex/magnesium and feel much better for it. GP not interested now I am on Vit D. I was tested for coeliac about 10yrs ago and it was normal. It has been recommended to me before on the forum but I have been reluctant to go gluten free as I enjoy bread. My Thyroid peroxidase antibodies were 237 last time on medicheck.
Then you really need to try gluten free diet.....you won't know if you might have significant benefit unless you try it
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
thanks will read these links.
It could be lipoedema as you say you have always had big legs. This is a condition which worsens over time and then leads to lymphoedema. I have both of these and also an underactive thyroid.
You've gotten lots of thoughtful replies, lesbud1, but here's something you can try immediately: there's a technique to help drain the fluid out of your legs, and it's demonstrated very well on the M.D. Anderson Cancer Institute's website. I used the technique twice a day for several days last week and I can say it work.
There's a security issue with posting links so here is what you type in Google:
md anderson manual lymph drainage
The search will return two videos, one for upper extremities (arms), not relevant, and a second one for lower extremities (legs). You'll see it demonstrated on a well-swollen leg. The video steps you very methodically through the process. It is a matter of "stretching the skin" in the direction the fluid needs to return, and it's not massage, but coaxing the lymph nodes and its drainage system to get moving. You have to sit on the edge of a firm chair, completely naked, in order to do this, so plan accordingly! When done, drink plenty of fluid and follow other directions at the end of the video.
Best wishes.
Sometimes this may indicate low potassium. Take HCL with meals to help absorb minerals.
thanks. what is HCL and what does it do please?
It's the acid your stomach produces to break down the nutrients. With low metabolism as in being hypo we don't have enough. Many times people with reflux have the problem due to low acid. This begins a cycle of nutrient deficiency especially minerals and amino acids because they need this acid so your body can use them. Even supplements need this acid. You could look up Betaine HCL at a healthfood website and read reviews about it. Minerals are very important to us and so are B vitamins.
Check any tablets you may be on. I had painful swollensore legs for years . A consultant I saw about another condition, saw my legs , looked at my medications and immediately took me off Enalapril. My legs were normal
( almost) within days. My legs are much more comfortable now
thanks. not on any medications other than an antibiotic I had for my chest infection.
Worth chatting to your GP about it. There are a few causes, the simplest being fluid retention, a bit more worrying cardiac function. If it is fluid retention you can take diuretics to make life more bearable. I have been taking them for the best part of fifty years now both for swelling and a heart thing. From time to time you will need a change of brand as they work a little differently. A bit trickier when our blood pressure gets too low. Avoid tight clothing and footwear. Never stand around, keep moving, at night raise feet above hips. Good luck.
What has helped me is walking back and forward in the swimming pool for half an hour whenever possible and also aquarobics. Also I have a bed where I can raise the feet. I still get occasional bad swelling for no reason i can work out.
Good luck
Please don’t take any diuretics (natural or otherwise) without seeing your GP. They are actually contraindicated in lymphedema.
I have awful swelling in one leg only and because of that, have been tested twice for blood clots as well as heart and kidney function. I’ve had a CT to see if I have any masses in my leg or pelvis that could be causing it. It can also be caused if you have varicose veins because the valves in your veins don’t work as well so I had to have some blood flow tests too. They still don’t know why I have it but are now leaning towards a spinal condition that I have.
In some cases diuretics are recommended and in some they aren’t. Also, pitting edema is not seen in lymphedema except at the earliest stage so if it’s pitting (where you press your skin and the indent stays) it’s less likely lymphedema. It could be anything else I’ve mentioned, or even some of your drugs or imbalances in various electrolytes and minerals as has been mentioned above.
One of the simplest treatments is compression stockings and your doctor may recommend those. They’re not cheap but they do help a lot.
SlowDragonAdministrator
Getting full Thyroid and vitamin testing privately and come back with new post once you get results
Members can advise on next steps
See a different GP and point out clearly and firmly that you have had RAI and therefore have no thyroid
With no thyroid
Official NHS guidelines saying TSH should be between 0.2 and 2.0
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
See box
Thyroxine replacement in primary hypothyroidism
They used to call that "dropsy." Maybe that was only in the U.S. medicinenet.com/script/main...
And Elephantiasis
I think you might mean elephantiasis?
Link to some information:
Hi lesbud,
As already advised, if this is a new occurrence, see your GP a.s.a.p. As it is both legs, in my personal opinion, it is not likely to be clot related but if the legs feel hot and swollen this does need to be looked at soon. It is possible to have a clot and no heat in the leg. I have ankle and calf swelling for over 20 years in one leg ( old ankle sprain that never really healed well) and in more recent years ( post menopause) both ankles and calves but the uninjured one is much less severe. Both my Gran and my mum had tree trunk legs, as I always called them. I am hypothyroid/Hashi's and 'morbidly obese'. My mum did not have a thyroid problem, not sure about my nan but both also suffered ankle injury.
All of my bloods are perfect, very slight kidney deteriation but I am 60. My heart is fine despite having had 2 lots of pulmonary embolism ( 1 from a DVT). My GP's have never been any help with helping me understand why I get the swelling, they have nothing to go on.
So, these are some of the things I discovered that effect my swelling, which is pitting and takes quite some time to return to normal. I find that certain foods make the swelling much worse, Chinese food, processed ham and bacon etc. They all have problematic preservatives in them, nitrites/nitrates. monosodium glutamate... avoid them. Take a few days to get out of the system.
I find elevating the legs, above the level of the heart, that means on the back of the sofa with you lying down or up a wall with you lying on your back, helps a little but it is very short lived. In the distant past I did a detox, eliminating all meat, wheat, alcohol, sugar, dairy and 2 weeks in, the ankle swelling disappeared. That is the only time I have had skinny ankles in 20 years.
Very recently it got much worse and I was struggling to get any shoes on or walk any distance. I persuaded my GP to prescribe some compression socks, which I have had in the past. These do help a lot, in fact, the new ones I got today have made an immediate difference. I can already get a pair of ankle boots zipped up which I have never really been able to do since they were new.
If all possible causes have been investigated and nothing found, it is possible to keep it under control with compression. What I have found in the past is that if I have worn compression socks all day, when I get up in the morning the swelling is less apparent than the previous morning, when I hadn't worn the compression. So you are starting the day with less swollen legs immediately and if you continue to wear them this will continue. I find that as soon as I stop using compression the swelling returns. It is important to measure the legs as guided by the manufacturers to get the right size.
I hope some of my experience is useful and that you get some appropriate help from your GP.
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