Hi,I'm a 24 and i have "post-thrombotic syndrome".
Posted , 17 users are following.
Hi,I'm a 24 and i have "post-thrombotic syndrome". Two years ago I had a DVT that ran from my foot to about the height of my belly button. I have recently had a "doppler" and the clot has only partly cleared. It is still badly blocked in my thigh region and I've been told it wont break down anymore. I'm on warfarin and wear a compresion stocking. I have 2 ulcers on my ankle which are at least 3 months old. This condition has totally upset my life and I am desperate to get back to normal. Dr.s I have seen have said what I'm doing now is all I can do. I'm not satisfied with that at all. I feel no one is taking me seriously! I'm too young for this. Can any fellow sufferers give me some advice??Thank you very much for your time.Wade BradyVic, Australia
[i:e5a5e4e478]This message was automatically imported from the original Patient Experience[/i:e5a5e4e478]
1 like, 33 replies
lisa92786 Guest
Posted
Hi there. I've struggled with post-thrombotic syndrome for six years, resulting in swelling and intense pain in both of my legs. My doctors have had few solutions, advising me to cut wheat and dairy from my diet, as it made my inflammation worse, and wear compression stockings. The pain persisted, so I had to do a ton of research on my own. It turns out hypothyroidism runs in my family and can increase tge risk of thrombosis. I had tests years ago for hypothyroidism tgat came back negative, but never had the series of tests to track each thyroid hormone. Without health insurance (which is still expensive here in the US), I had to diagnose myself.
I already had a diagnosis of anemia, which impacts the thyroid's ability to function. I started taking iron supplements (specifically liquid Flurodix) to regulate my iron levels. After six weeks, my iron levels returned to normal. Then I began taking raw bovine thyroid supplements twice a day, once after breakfast and once after dinner. A few weeks later, I don't have pain in my legs for the first time in years. I still have minor swelling in my legs, but it's reduced, and the pain is gone.
Get extensive testing of your iron and thyroid levels, and don't give up!
sheila91262 lisa92786
Posted
ranbir0421 sheila91262
Posted
sheila91262 ranbir0421
Posted
Hi, My son attended Guy's & St Thomas' London under Mr Stephen Black, Consultant Vascular Surgeon and his team. All is good, he had massive DVT, PTS and MTS. I have written above about his problems. He is 16 months post stenting and has almost no symptoms and very active. He got his GP to refer him. You can search him online, he is running a trial for the stents as they are made for veins and v strong and flexible and the aftercare includes scanning to check no clots. You can even watch the interventional radiology on you tube. Good luck, Sheila.
ranbir0421 sheila91262
Posted
Hi Sheila, is there a way we can get in touch with you. Can't find much satisfaction after speaking to the GP's. May be you guys can help thanks
Regards Ranbir
sheila91262 ranbir0421
Posted
Hi, Have you been properly diagnosed with post DVT problems? My son had no help with his GP and local hospital, it was only when we researched online that we heard about PTS treatment and they diagnosed the May Thurner Syndrome at G&StT and suggested stenting. This treatment has only been around a couple of years in UK and has been successful except in some v complicated patients. The GP referred him to Mr Black under NHS Choices and we waited about 3 months for an appt. In my experience the GP has to refer you if you need to see a Consultant and you can choose which one. The Thrombosis UK Charity is v good and informative and they have a facebook page which I contribute to. Lots of info online now, far more than in Jan 2014 when we started looking.
Is that enough to help? Sheila.
ranbir0421 sheila91262
Posted
I just have been going to GP lately as I can see there is loads of rashes appearing on my clot leg. It was Oct 2014 when I had a clot and was on blood thinner tablets for 6 months and nothing after that but the rashes and discolouration is appearing on my leg and it's really impossible not to scratch and I can see it's getting worse. I did research online and I think it's called PTS. GP's say just keep using moisturisers but I have been using them for quite a while now and it's not making any difference. I really want to control this before it gets out of hand. Would these stents help with all this and how much did they cost you?
sheila91262 ranbir0421
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ranbir0421 sheila91262
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Hi Sheila no I don't wear compression stockings at the moment but do wear them on long haul flights. I have swelling , itchiness and discolouration and getting ulcerated is my main worry. I will try and book an appointment with Stephen black and will see what he has to say in regards to the leg. I think that will be the best way forward. GP's advice is not leading me anywhere at the moment. Does your son still has swelling etc. In the clot leg?
Karinbra ranbir0421
Posted
Hi Just thought Id put in my own thoughts. You are young and still have your whole life ahead of you and so you really do not want to blighted with the things you are describing. And it does not seem to be getting any better for you. Mr Black is very busy but it was definately worth getting his opinion re my daughter who is 21. She wears a stocking still most of the time as it does seem to help with the swelling and pain. We get her mail order ones which although expensive are really worth it and she just wears it on her one leg - so in fact she gets two for the price of a pair. She uses an Italian company called Solidea and you can also get some on Pebble UK. She uses the most strong ones 20 - 30 mg/. Also she tries to do as much exercise as she can - walking and also swimming which also seems to have helped. My daughter has not had a stent put in as so far she seems to be managing and the symptoms are not too bad but from Sheila's son's experience - see previous posts - it definately seems to have made his leg almost back to normal.
Good luck with everything
Karin
sheila91262 ranbir0421
Posted
Hi, My son has only a very small amount of swelling and no pain, discolouration, numbness or itchiness. He was lucky that his diagnosis and advice from Mr Black involved him encouraging exercise using properly measured NHS compression stocking on the DVT leg. He was glad to me adviced to be mobile as his local hosp had adviced rest not exercise. As Karin says below the swelling improves with activity and this encourages the body to heal. The Consultant, hopefully you will get to see him, will be able to review your progress if you have improved your circulation yourself by being active. The nurse at your GP surgery will measure for size and degree of compression. You can move on to others in time if wanted. The team at G&StT will scan the inside of your veins to find if scarring and measure your flow of blood in the veins. You may not need stenting. My son's symptoms had improved noticeably after exercising but still was not back to normal. He continued to use stockings for quite a long time as he found the swelling was more without it even though the swelling reduced over night. As I have said to several people getting to the right place to get advice, diagnosis and treatment and then ongoing check ups to find progress is very helpful for the body an the mind. Good luck, keep us informed. sheila.
ranbir0421 sheila91262
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Hi Sheila,
Hope you are well. Is there a way I can get the contact details of the doctor where your son went for the stent? I think I can visit him once and may be I can discuss my case with him? Thanks in advance
Regards Ranbirwindow.post_1494329430601_14 = function(win,msg){
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sheila91262 ranbir0421
Posted
Hi, you can contact Mr Stephen Black at St Thomas' Hospital London by calling 020 7188 2574 as on the internet. As I have mentioned he can be seen by a referral from your GP. He also is in private practice, lots of info online.
Sheila.
gemma70894 Guest
Posted
hi i am new to this but felt like this is similar to how my story began and hope you can get some kind of relief as i continue to struggle.
i am a 38 yr old woman of slight build and apart from this good health. I had my first clot at the age of 18 and had a lot since then. I was even getting them on warfarin. At the minute i am on rivaroxaban and clexane injections. 3 yr ago a scan showed a totally blockage of a vein in my left leg, this meant my blood wasnt flowing properly and i was in constant agony and couldnt breathe well. I was advised they needed to perform a vein bypass surgery, take the lot out which was damaged and build up a healthy vein to replace it. That surgery almost killed me. The scar that runs from my right knee up through my stomach and down to left knee is nothing compared to pain i am in. It took me months to walk again and i am still in horrendous pain all day every day. I dont blame the doctors, this is my body. I am hoping to see my surgeon soon to discuss what we can do next. I am just curious what is your situation now?
bob82482 Guest
Edited
You're doing so well and continue to stay positive!