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Has anybody had an under active thyroid that caused Lymphedema?

My Legs are so swollen i feel like they are going to bust .I have a hospital appointment for early July but am not sure if the swelling will bust my veins or something before then.

I have no bandageing and my doctors seem unsure what is happening until i go to the hospital.

I went and saw a new doctor last week and he tells me it could be my thyroid that is causing the problem so he put me on diuretics and told me to come back next week for a blood test .,

Has anybody had similar issues with their thyroid causing swelling in the legs?

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galtyboi

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I can't understand why the doc has put you on diuretics before taking blood to confirm thyroid problems. Who diagnosed the lymphoedema? Diuretics might make a difference short term, but could exacerbate the lymphoedema if taken long term.

He put me on diuretics to see if it will help reduce the swelling in both legs,also to have a blood test next week to see if an under active thyroid problem has come back ,as i had treatment for it previously..Thats why i would like to know anybody had same problems with Thyroid and swollen legs or if Thyroid problem could cause legs to swell .Thankyou kindly for your reply .

Galtyboi.

My lymphoedema specialist told me that a very well known surgeon who practised until the end of last century used to give diuretics to all his patients who developed this problem. I thought that nobody else continues with this practice. I would look on the Internet and see what problems are caused by an under active thyroid gland. Have you tried to swim and see if your legs feel better? You have to try and do something to alleviate the problem before you see a specialist as I imagine it must be very uncomfortable, to say the least.

At one time i was a very active person and loved to swim ,but as the years have taken their toll and arthritis has set in ,and now with Lymphoedema i find it hard to find shoes to fit ,so am most of the time with just socks on ,which has resulted in me staying indoors almost all the time.I wear tracksuit bottoms all the time as they stretch to suit swollen legs, trousers are not designed for people with Lymphoedema so can't wear them.Lymphoedema has certainally changed my life thats for sure.

I too have very fat feet and struggled to find suitable shoes tjen found J D Williams sell them online.

Forget about shoes, why don't you try plastic clogs or Sketchers which suit wide feet. I would look for anything so that you can go out of the house as inactivity must be very bad for you. I found for instance: ebay.co.uk/itm/World-of-Clo.... Have you tried these type of clogs?

Hi Rebec,I just had a look at clogs on e bay and no way would they fit my swollen feet ,i have got shoes from wider fit shoes which used to fit easily,but now feet are swollen Not many shoe manufacturers make shoes for swollen feet .i am hoping when i start treatment next month i wont have swollenfeet for long fingers crossed..

Also, I thought also about the kind of pedals that one can buy for home use in order to exercise the feet (I think they advertise them for long flights to protect people from DVT). They could help you in reducing the lymphoedema.

I'm not a doctor but I really don't think you should be taking diuretics. My consultant is adamant that people with lymphoedema in their legs must NOT take them - they make NO difference at all and could cause problems longer term. I also have an underactive thyroid which is controlled with thyroxine but as far as I know it has nothing at all to do with the lymphoedema. My lymphoedema is primary and inherited from my mother who also had it in both legs and she never had thyroid problems. Maybe you could see a different GP? Make sure you chase them for the blood test results - they shouldn't take more then 7 days.

Good luck.

Fiona x

Hi Fiona ,I must agree with you ,i feel that since i started these diuretics i have noticed no change and as from tomorrow i am going to stop taking them.I used to have thyroid problems and have all the symptoms it has returned ,dry flakey skin ,Eye sight not as good ,feeling very cold all the time even in warm weather ,feel like i got no blood as i am pale .swollen legs and feet ,something is not right and treatment is slow ,but i can't complain ,i have been well looked after by my gp's ,it;s just that the whole process takes a long time so i will go with the flow and see where it takes me None of my Family ever had thyroid problems or lymphoedema problems ,but i had thyroid problem in the past ,now i got lympheodema and it seems thyroid problem is back ,i was just wondering if there was any connection.Thanks again Fiona for your reply.

Larry(Galtyboi)

( Galty) From Galty mountains.

( boi) Born of Ireland.

Fiona is correct; diuretics work on the vascular system - this is the lymphatic system and they are not interrelated.

There is a research published in 1994 called "lymphoedema and hypothyroidism " in the abstract of the research report says (l quote) "hypothyroidism-like thyroid dysfunction was found in 80 % of patients with primary lymhedema. It is hold that lymhedema patients should undergo the thyreoidin test and combined treatment including thyroid hormone therapy " (end of quote).... if this is the case, it maybe a connection between thyroid hormone function and lymhedic system function more than we know... l think it is worth to take it in consideration and check with the doctor.

Thanks Daniela.

I have secondary lymphoedema in my leg/foot since cervical cancer treatment in 2017. I've had a couple of ICG lymphography scans + a lymphscintigraphy scan which indicate I may also have underlying sub-clinical primary lymphoedema. Certainly my secondary lymphoedema progressed more quickly then is ususal. I was diagnosed with Hashimoto's thyroiditis in 2004/5 following blood tests but because I had no symptoms I decided not to take thyroxine although my doctor wanted to prescribe it for me - I might reconsider now.

I can't vouch for it's reliability but I found the following after a bit of googling: wilsonssyndrome.com/thyroid...

Hi Larry. I can sympathise entirely with your problems. Maybe your GP will test for anaemia too? It isn't as common in men as it is in women but it's a possibility and it can make you cold all the time and pale. I'm glad your GPs are good - it's very important to have a sympathetic doctor. Best of luck with everything.

Fiona (born of Southport!) x

Thanks Fiona ,i will ask them about it on my next appointment,I was always warm and loved the doors open for fresh air ,and in the summertime spending time in the garden ,but i haven;t been in the garden once this year ,i'm constantly cold ,and it's one of the symptoms of hypothyroidism which i am going to be checked for on Friday when i have a blood test ,thats if i don't freeze to death first ,ha ha .Thanks for getting in touch and for your help Fiona ,very much appreciated .

Larry

I have hypothyroidism and lymphoedema, but have no idea if the hypo contributed to the lympho. I also was on diuretics for 20 years before I was correctly diagnosed, sadly I think they contributed to the deteriation of my condition as its very fibrous and shapeless now in my legs

Hi Thankyou for getting in touch .I am the same i Got both Hypothyroid and Lymphoedema on both legs ,i am on diuretocs too but not sure if they are any help to me ,Nobody seems to know if there are any connection between both ,but a lot of people with Lympheodema also had or have thyroid problems as well ,maybe it's just a coincidence who knows?I understand how you must be feeling ,but we are both fortunate that we got the support of many good people here in LSN which is brilliant.Thanks again for sharing you experience with me and hopefully things will get better for you .

Larry.

Hi Larry,

my heart really goes out to you, it must be a horrible sensation in your legs! It sucks that your apt is not until early July. Is there no chance you could move it forward? If not I would say make sure to keep your leg up as much as you can to reverse the fluid and provide you with some relief. I too have heard that one should not take diuretics when having Lymphedema. You really should get some compression treatment but perhaps you will after the appointment. I wish you the best, please keep us posted on what happens.

Liz.

Hi Liz, I did ring the hospital and asked if there was ever a cancellation ,i would fill it without a problem and at no notice ,but they told me that it's very rare there is a cancellation as there are many people on the same boat as me ,so just got to wait till 11th of July to be seen .which i understand.

The real problem is ,there are many people suffering with Lymphedema but not enough medical trained to treat it .,therefore appointments are taking a very long time..

Hi again, I just thought of these boots that I posted something about a little while back. For me this style was a lifesaver my first winter with Lymphedema. They might be a little girly but if the alternative is not leaving the house then they might do?

ebay.com/itm/FREE-Ship-Pick...

Also, I found lots of wide leg trousers/pants on eBay, have a look. On my blog I have a guide for clothing and lots of search terms I use when looking online. Try looking for Hakama pants, they are Japanese martial art pants and very wide legged but in a very cool way, I think.

Liz

I feel for you for sure...Liz, can you send your web add so we can look at clothes? i have L in my arm and NOTHING does on over it. Alll my T shirts are ripped up.

Hi Vicky, my address is lymphedemagirl.blogspot.com but I am afraid I don't have anything on arm lymphedema, sorry about that.

You are more than welcome to stop by anyway, I hope you will.

Liz

Ha Ha ,nice one Liz,i had a look at boots but i'm afraid they are just about big enough to fit my big toe lol .The Best i came across was from widerfit shoes who were able to do my size 12 with extra extremely wide and extremely deep which are now not big enough due to swollen feet ,so you can imagine what i look like lliz .Bless you for your help anyway Liz ,it is very sweet of you to show you care ,Thanks Liz

Larry.

Oops, sorry about that, Larry, I didn't check the sizes, just the style...

It's good that you have the Widerfit even though they may look a little funny - at least you have something to wear. I am absolutely sure that shortly after you start compression treatment you will have more choice of shoes.

Liz

I hope so Liz,i can't wait to start .my ;legs feel like a ton weight ,i just want to get walking again and be able to get out ,I hope things work out ok fingers crossed ,lol.

Larry.

I too don't understand why you say you had treatment for underactive thyroid, this does not go away,so you should be on thyroxine for life. It is extremely important for your health as whole. As to whether it affects lymp. I have no idea. I have hypothyroidism and have been on tablets for nearly a year, after the "sliding scale" reached the state where I was put on thyroxine. I am also on diurectics and am interested to read that this could be counter-productive. .Personally I find this helps but if it has long term consequences am going to have to go back and see my GP.

Good luck with your treatments.

HI: If your edema is from hypothyroidism, it is not at all like lymphedema and you may be able to take diuretics for the edema that comes from the thyroid problem; but don't do it if you have lymphedema.

Helen

please Forgive me ,i was on carbizamole for a year and a half and seen an endercrinoligest and having regular blood tests till my Thyroid was brought back in line .it was overactive ,i beg your pardon .

Larry

Hi Larry, No forgiveness needed ...some of us were just a bit concerned that you were not receiving the correct treatment for underactive thyroid.

hello read you post and had to join this sounds like me. I have hypothyroidism now for 7 years recently in the last few months my legs swell to the point of busting my blood vessels. I went to the endo. dr. for my thyroid and they increased my thyroid meds and do date have been on 5 different water pills. Still nothing seems to be working. Each day when I get home my feet/legs hurt so much and I have a bulge above my boot of swelling. I have recently had blood work for Lupus and RA and no signs of these. I just got tested for hepatitis just to rule this out, now my liver functions are high but looking like its fatty liver due to gaining 10 lbs on a month. I am currently on Synthroid 175mg and blood work says my thyroid is in range??? Any advice will be of great help I am so tired of being tired and not getting answers. thank you

Sounds like you got lymphedema ,you need your Gp to refer you to a lymphedema clinic .having swollen feet is how it started with me after treatment for an over active thyroid.Then legs started to swell then it was the problem of finding shoes to fit.Eventually after a lot of reading about lymphedema it was decided by my Gp to see the lymphedema nurse .and yes I got lymphedema.Water pills are not the answer I was told as they can damage the liver.Compression garments and Mld (manual lymph drainage) seems to be what you need.See Mld on you tube lots of videos there and see if it is for you.I think a referral to a lymphedema clinic in the meantime would be a help to you.Good luck.

I experienced lymphoedema at the age of 40 yrs. My ankles and legs would swell up increasing thru the day. Saw a vascular specialist and was told I had blockages in my veins. I also have hypothyroidism. Once I was able to get my thyroid levels balanced the swelling would disappear. If the levels are off I my legs will swell up again. So to answer your question. Yes I feel that there is a major link to both. GOOD LUCK

HI: I read that it is becoming more common for hypothyroidism and lymphedema to go together. I've had the two for 54 years - got them in my teens. Do NOT use diuretics for lymphedema; it willl make it worse in the long run and I am speaking from experience. I had big, big legs (the lymphedema is whole body) and the doctors kepts prescribing more diuretics. Finally, about 25 years ago, I went to an endocrinologist in Calgary, AB. He said diuretics make lymphedema worse. I've cut off diuretics and the lymphedema has become much, much better. Yes, it is still there but I can now get shoes to fit, albeit wide ones. Go to a shoe store that sells wide fitting shoes. It's the only way to be comfortable. You can try as wide a shoe as you can from a regular shoe store but it will never be comfortable. I have some comfortable shoes size 6.5EE wide. They cost a lost but do it for comfort.

Helen

galtyboi: I read, but you will have to search it, that doctors in the U.S. are noticing there are a lot of hypothyroid patients who have also lymphedema. It is true you can get a bit of swelling with the hypo condition; but take notice if the edema is greater than it might be as a hypo condition. If it should be lymphedema you are developing as a follow up to the hypo condition or maybe it comes from the hypo drugs, then you should NOT be taking diurectics. My lymphedema increased dramatically from taking diuretics until I found a Dr. who said never, never take diuretics for lymphedema. I've had both conditions for 54 years. I've had to learn most of it from my own experience with it. Some people can take the bandaging or compression stockings, others can't. I get shortness of breath.

Hi I have autoimmune hepatitis and take 5 mg prednislone and 100 mg mercaptopurine daily , my liver is doing well , bloods are in normal range. Since August ive been swelling up , it's worse from the knees up although I do get some swelling in my lower legs,feet and ankles, it's also in my face and around my eyes,I'm so tired, I can easily sleep for 10 hours , my liver consultant has told my GP to rule out a cardiac cause by way of an an echo and my gp is disregarding this because my feet and ankles are not really swollen ,I'm taking 40mg frusimide a day which is helping a bit , my thyroid function is normal , I'm really fed up with it now and feel stuck with no answers , I'm 44 ,work part time and have three kids aged 7,10 and 17.

I am about to revisit my doctor tomorrow. My preliminary blood work showed my thyroid levels are off - I have been on thyroid meds for about 25 years. He ordered additional blood work. Almost a week ago, my legs felt like they were going to burst, lots of bruising and deep pain. I have also been experiencing my toes involuntarily curling up and cramping in my hands, sweating around the neck, sudden painful spasms in my back, etc. When I looked up these symptoms, I found this helpful article:

hypoparathyroidism.com/asse... (I had been diagnosed with Hashimoto's thyroiditis years ago; maybe I was misdiagnosed?

I also found this helpful article:

wilsonssyndrome.com/identif...

I will be taking these articles with me to the doctor's office tomorrow.

Here's hoping the articles I have found will be of use to some of you.

God bless.