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.

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.

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?

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.

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 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

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 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 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

Hi

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.

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

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.

If it’s lymphedema, diuretics will make it worse. Doctors are clueless when it comes to lymphatic system. DO YOUR HOMEWORK!