Hi there, after some advice as on fri 14th march went to appointment with gastro team as i havent seen anyone since i was admitted to hospital in November 2023 with the diagnosis of portal vein thrombosis after a short stay. I was then diagnosed in January 2024 with essential thrombocythemia and started Pegasus treatment with aspirin and also type 1 diabetic for 42 years now. They basically said my clot has gone from acute to chronic but when i asked if it can be removed as my liver function has got worse over the period of time of having the clot they said due to the other factors of interferon treatment and insulin use etc with the diabetes they can't it is just treatment with bloodthinners and im on apixaban 2.5mg twice a day. Going for an ultrasound on the liver in the next coming weeks to check for damage because of my liver readings but im thinking do i really want to carry on taking medication if its not helping the liver and its getting damage and could i stop the bloodthinners and try a more natural alternative or is there anything i can take to help the liver along with medication that is natural. Im 45 years old with three children and the thought of the liver failing and me leaving them sooner than thought scares me. Theres no holistic drs in the west midlands of Britain where i am to ask for advice either. Thank you for listening to my moan 💜
Essential thrombocythemia and portal vein thromb... - MPN Voice
Essential thrombocythemia and portal vein thrombosis
This sounds like a complex situation. While surgery for PVT is not always precluded when you have ET and take interferon, there are more factors to consider. Suggest that a joint consultation with a hepatologist and a hematologist/MPN Specialist is needed to explore all PVT treatment options. I would also get a second opinion, ensuring that you consult with a MPN Specialist at a major hospital center where they treat more complex cases. Sometimes the major hospital centers have the capacity for treatment not available in smaller settings.
There are some natural supports for the liver. Note that the interferons can raise liver enzymes and may be part of what is going on. My Integrative Medicine doctor prescribed milk thistle extract, which lowered the LFTs significantly. It is important to get expert consultation when considering supplements. Anything that is biologically active enough to help you can also hurt you and interact with medications. The docs with the best expertise are usually Integrative or Functional Medicine doctors. Here is a list of Functional Medicine doctors ifm.org/find-a-practitioner . You may also find a pharmacist with this expertise,
Wishing you all the best.
Thank you so much for this hunter ill have a little look of the list you gave me and got an appointment on the 28th and will ask about a joint consultation with a heptologist and also see if they will refer me to St Guys as seen on here people that go there feel much better as they have more knowledge and experience than some of our smaller hospitals
Great suggestions again Hunter5582. The only comment I would make is that Functional Medicine practitioners are not all doctors - here in the UK anyway. I stopped going to mine as they put up their prices by £100 per hour to around £350 per hour and just to ask a question was £80 for 10 minutes!! The cost of the supplements alone came to £392!! I could not afford it and it was a rule-bound organisation. I sought to complain to the IFM but they are not a regulating body and there are no codes of practice, codes of ethics etc. I therefore had no one to complain to. Further, the lab. they used for testing also had negative reviews on TrustPilot which I found out only after being tested by them and the results for which had anomalies. So Functional Medicine practitioners come with a health warning from me. Best to get a recommendation for one, which I did not do but chose a practice here in the Midlands though they did it via Zoom so travel was not relevant. There are about three in the UK who are also doctors and one who said that their fees were £125 per hour. Getting the lab tests done is about £400. So unless you have a lot of spare cash and have done sufficient research into practitioners it is definitely a case of buyer beware!
A few ive looked into like you say £80 for a 10minute talk is a big hit with having a family to provide for so sort of put me off just on the expense of advice and supplements. A bit more research and trying to get a second opinion is going to be my next move if things have not progressed with my original consultants. Thank you for letting me know i appreciate it
Thanks for the advisement. I did not realize that someone who was not at a prescriber level (MD, DO, MBBS, PA, NP) could advertise themselves as a Functional Medicine Practitioner. Very important to check out the level of qualification of anyone providing medical services. I would not see anyone who was not qualified to prescribe medicine.
From my experience, being an MD or the like does not assure good care. My Last Dose disaster was made worse by an integrative med Dr. A big part of that practice was about selling supplements, similar as you describe. A harsh way to learn l had become intolerant to glutathione, esp as this practice was about mega doses of everything. Hunter has a particularly good functional Dr, it's hard to know which are from online reviews.
I agree with you. Complementary therapists can seem to be exploitative as they can hook the vulnerability in someone. I think that's how I was with the shortage of Peg. When I was put on a break. Thankfully I'm wiser now, but many approaches come with a government health warning. Take good care one and all.
A referral to a specialist centre such as Birmingham or The Royal Free may be something to consider. Both have expertise in portal vein thrombosis and ET as they have liver units & haematology
My haematologist did mention I'd probably have to go to birmingham for the portal vein thrombosis when they diagnosed the ET last year but just been left so im going to keep on at gastro and haematology until things are sorted now. Thank you for the advice on both
About 30 years ago I had intense pain in my swollen spleen. I was diagnosed with a portal vein thrombosis. I had other tests, eg ultrasound, ct, liver biopsy endoscopy and then when the pain subsided I was on a watch and wait approach with 3 yearly endoscopies to monitor for varices. Eventually about 15 years ago they diagnosed et. I'd probably had this all along but my platelets weren't a problem. So although it can be scary in my case I didn't need treatment beyond aspirin for 25 years
Professor Deborah Shawcross is awesome, if you can get a second opinion, in King’s College Hospital. Professor Shawcross works collaboratively with Professor Claire Harrison’s team at Guy’s. Professor Shawcross is an expert hepatologist. I am supporting my kid brother who has Polycythaemia Vera and Portal Vein Thrombosis. I’d recommend an URGENT SECOND OPINION if anyone directs you to splenic embolization BEFORE they touch you. There is medication that can minimise the impact of the clot, such as Ursodeoxycholic acid (but don’t quote me). Treatment is variable because the condition is rare. There are ‘stents’ that are sometimes inserted. I’d recommend only Professor Deborah Shawcross who works collaboratively, is totally expert, and who picks up the pieces of poor care enacted elsewhere. Personally, I’m not keen on Royal Free, due to our experience of poor collaborative working (in our experience) even though they are also considered to be expert. Good luck.
hello! I had a portal vein clot that made a 98% blockage of my splenic vein and high liver enzymes. I had two young kids at the time who are now 14 and 17, and it felt like a death sentence. I completely understand your fear. It caused depression for me back then as well. It’s been 8 years since then. I am stable with no clots.
At that time, I was admitted to the hospital for four days on a blood thinner IV to break it up. I’ve been on Warfarin since then and aspirin. It’s important to stay really hydrated as well and don’t get run down.
You have to find out why you got that clot. That’s the most important step now. I have polycythemia Vera JAK2+. My body will keep clotting if I don’t take meds. I take hydroxyurea which is a type of daily chemo for that. It doesn’t make your hair fall out fyi. Your liver enzymes went up because the clot was making your organs work hard. Once you resolve the clot, the enzymes usually regulate. My enzymes were high for six years BEFORE the clot, and no one could tell me why after years of monitoring and many apts for the liver. A clot in that area is rare, and doctors rarely think outside the box. I had two young interns finally diagnosed me with PV. I’d been to three different types of doctors with liver, eye, and swollen abdomen symptoms for six years before these two young ladies figured it out because they had just read about PV in their textbooks! God sent angels!
Our family uses much more of a holistic approach than traditional medicine, just like you. However, this is NOT the time for that; this is a serious issue and is life-threatening if it isn’t treated. I’ve done years of my own research and went with the medicines that I listed above. I also take good multivitamins made by Pure and My Community mushroom support for overall immunity benefits. Please don’t try to treat yourself holistically! Please schedule an appointment with a hematologist who specializes in thrombosis and PV, so you can get the cause diagnosed. This is usually through an oncology hematologist. That Dr will prescribe full abdomen ultrasounds every six months or more frequently at first to make sure the clot goes away and the spleen and liver heal and don’t grow. Then you can ADD a holistic Dr into your approach WITH the hematologist.
You may be scared and nervous, but don’t let fear stop you; do this right away. you got this!
Blessings!
Thank you so much for this information im going to have to give myself a shake and get on top of this with your advice x
A TIPSS shunt in your vein would probably work - I have Budd Chiari which is similar position - blood clot in Portal vein. This treatment saved my life twice when I was in chronic liver failure. You need hepatology and haematology teams working together
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