Thyroid UK
82,676 members97,717 posts

are you obese ? and carnt loose weight ? you may have LIPEODEMA !!!!

hi all thought a must to share my news with you in the hope it may help others suffering the cruel taunts from people and doctors when we dnt loose weight !!! ........dont worry as it may not be your fault at all......YOU MAY HAVE THE DISEASE " LIMPEODEMA " i had thyroid cancer 2005 , total thyroid and parathyroid removed and had radiation. i have suffered with weight problems since my periods started and im now 45yrs and finally have my diagnosis of a rare diease called LIMPEODEMA !!!!! please read up on it and if you think you may have same problems please get your doc to refer you to a lymphedma clinic as my endocronologist didnt even realise i had it !!!!! i start after xmas having drains and pressure bandages to help the pain etc as im afraid there is no cure for limpeodema as you will see when you read up on it. im just thankful im at the end of my horror film.......hopefuly you all out there will be clear of this disease but if you do have it then im always here to talk too and explain what im goin through. OR IF YOU ARE ALREADY DIAGNOISED I WOULD LOVE TO HEAR FROM YOU XXXXXXXXXXXXXXXXXXXXX

3 Replies

Thanks for letting us know.

I hope your new treatment helps, it sounds like a very unpleasant thing to suffer from.

I wear pressure socks or tights because my legs swell up otherwise, but my diagnosis was different to yours, something to do with lymph though. I was diagnosed about ten years ago in Germany, prescribed tights that took ages to put on but felt wonderful once I finally managed! I now buy my own because the prescription ones were so thick, I like the company called pebble.

Oh and I also went on a lymph draining machine where you put your legs into sort of full length sock things that then press in. That was nice, it felt good.

Take care

koala x


I am going on Saturday morning to see the only Lymphoedema specialist in this country. Prof Peter.Mortimer. There are Lymphoedema clinics around the place but only one expert (told to me by the Lymphoedema clinic nurses). Some months ago I noticed that I couldn't get my left wellington boot on and on closer inspection found that my whole lower leg was ever so slightly swollen. I was thinking that it might be a DVT (Deep Vein Thrombosis) so I went to the Dr even though I had not got the typical signs, eg pain in calf, or painful swelling. He examined and did a "Doppler" test and found nothing wrong but I wasn't happy. I mentioned it to the nurse when I went for my flu Jab......"that looks like Lymphoedema" she said and I'm a nurse and hadn't even thought that that might be it!! I am overweight but very active, Gym, Cycling etc. So, that's where I'm going on Saturday, to have a Lymph Scan to see what's blocked. I didn't know that surgery could cause this condition (I had both hips replaced and this can cause the damage causing the Lymph fluid to be retained in the tissue and not drain out properly). Also it's not curable. So just another thing to add to the long long list of what's wrong with me!!!


Hi Phoebs -I don't have this condition myself but a friend of mine does. She had breast cancer and hers resulted as a result of an operation to remove the cancer. It is in her arm -so one arm swells much bigger then the other -she was told this can happen as a result of cancer treatment. She has also been prescribed a pressure bandage -she is very active too.

my friend i know would be really interested to know how you get on with Professor -as she has always thought nothing could be done apart from a pressure bandage to relieve the swelling. So look forward to your update after your visit -hope it goes well. xx


You may also like...