Portal hypertension is an increase in pressure within the portal vein. The portal vein is the main vein that extends from the digestive organ to the liver.
The increased pressure is caused by a blockage (clot) in the blood flow from the digestive organs to the liver.
The increased pressure in the portal vein causes large veins (varices) to develop across the esophagus and stomach to bypass the blockage. The varices become very fragile and can bleed easily.
If the varices are discovered through a gastroscopy they are usually graded on a scale of 1 to 3, with 3 being the most dangerous to bleed.
In the US, they are graded on a scale of 1 to 4. (Esophageal varices will be discussed in greater detail on another article).
In my particular case, portal hypertension was caused by thrombosis or clotting of the portal vein due to an apparently unknown genetic defect, which was thought to be some kind of protein deficiency.
This cause often termed non-cirrhotic is not the most common cause of this condition, as is cirrhosis of the liver.
Cirrhosis results from the healing of a liver injury caused by hepatitis, alcohol abuse, or other causes of liver damage.
In cirrhosis, the scar tissue blocks the flow of blood through the liver and will slow it’s processing function.
Read more about my own personal Portal Hypertension Journey.
New Portal Hypertension Video:
Hello
It has been awhile since I posted on this site. Clint I am very glad you recovered from your problems last fall and I truly appreciate your positive attitude for the future.
It has almost been 5 years since I was diagnosed with Portal Vein Thrombosis and all the side affects that come with it. Once I had a small bowel re-section to deal with my damaged small intestine and got all the meds in place I have led a pretty productive life. I am blessed with wonderful family and friends. I also consider myself very lucky to be able to pursue many of the activities I participated in before PVT. I am happy to report they did not find any esophageal varices after my last scope but will continue to check in case any new ones develop.
I have recently been diagnosed with on going anemia. After taking supplements for 7 months my hemoglobin and ferritin levels remain below the normal range. I was referred to a haematologist and after many tests, he concluded I probably (not 100% sure) have a condition called vascular ectasia. He explained that they were little pinpoint bleeds from the small intestine. Apparently, endoscopy and colonoscopy does not reach a section of the small intestine so it is difficult to know for sure. The treatment prescribed was to continue taking iron supplements and to have my hemoglobin and ferritin levels monitored every 6 weeks. I was wondering if anyone else on this site has had similar problems with anemia. I would appreciate any input on the topic.
Warmest regards,
Audra
Hi Audra,
Thanks again for posting on this blog. I am sorry it has taken me so long to get back to you, but the busyness of life has caught up with me. On the health front things have been stable, and although nothing like it was last summer, there are the typical maintenance issues related to my health that take up much of my time.
I am sorry to hear of your latest diagnosis (vascular ectasia), and I must confess this is a total new one on me. You mentioned that your ferritin and hemoglobin levels are monitored closely, and you take supplements for that, so I was wondering which ones you actually take for that? Has your doctor mentioned iron infusions (such as iron dextran) as a way of keeping your iron levels at a higher level? Maybe your levels are maintained well with just the supplements you take? I know for myself iron supplements were not recommended as per the increased danger to bleed (esophageal varices), so that is the reason I get infusions every 4 months to keep the levels high.
You are right in saying you are blessed with wonderful family and friends who support you and in turn you are able to lead a productive life. Its so important to have a base like this to keep you moving forward. Another reason I am happy for you is that you have no evidence of esophageal varices, and to that end I hope you always are kept from having this complication of portal vein thrombosis. Take care my friend!
Best,
Clint
Hello
Thank you for responding to my latest post. You raised some interesting points. My doctor has mentioned iron infusions but feels I should try supplements first. I was taking 150mg of iron (feramax) a day and am now taking 150mg twice a day to see if that helps increase my hemoglobin and ferritin levels. I just had them checked last week and my hemoglobin was borderline at 100 and my ferritin was low at 6. So I will try the double dose of iron to see if it makes a difference and go from there.
Thanks for your wonderful forum and I willl try to update my anemia condition if any radical changes take place.
Take Care,
Audra
dear clint this is the first time i visit this website i have had this diisease for 30+ yr i am 62 thought it would be nice to talk with someone who is suffering the same thing as i
Shurl,
Thanks for sharing. You most likely have much information to share regarding this disease, and if you want to jump in on anything please post your comments accordingly!
All the best,
Clint
My fiancee (30 years old) was diagnosed in June, with occlusive portal, splenic, and superior mesenteric thrombosis, as well as 2 other non-occlusive clots in two other veins (in close proximity to the other 3). Also, thrombocytopenia (as low as 37,000 at it’s lowest), enlarged spleen (which is probably holding all the platelets). They aren’t sure of his liver damage, as no one wants to do a biopsy yet, due to the clots. Also, because, about a month into the coumadin treatment, he was hospitalized with a GI bleed, where he lost 4-5 pints of blood – which had gone undiagnosed as to why – nothing was found during the endoscopy, colonoscopy, or capsule camera. All the “normal” causes of this, such as hep, hiv, genetics, etc., have come back negative. The only tests that have come back positive are H63D homozygous mutatiin (hemochromatosis), but all iron tests have been normal. And heterozygous MTHFR, which I haven’t had enough time yet to research myself. But the hemotologist doesn’t think these mutations ate the cause. At this point, he is being bounced back and forth between different doctors, as none of them know why or what to do, and keep “passing the buck” on to each other. This is making me physically and emotionally ill/stressed, as I don’t sleep or eat properly, and spend the vast majority of my entire days trying to figure out what is wrong with him, why, and how it should be treated. I can’t even get cooperation with the pcp, in keeping us updated on his coumadin dosing. He goes for his INR testing, and the dr/office never bothers to call with his dosing. I’ve had to deal with different on-call doctors, who aren’t even members of the pcp’s practice, then I have to explain every single thing, so they can figure out a safe/effective dose.
They also saw on the CT scan, cardiophrenic lymph nodes, which according to the report, point towards cirrhosis (I don’t understand this finding, as there was no explanation as to why that points towards cirrhosis. Would these not be seen in a non-cirrhosis patient? Or is a description of them missing, such as enlarged, or small, etc.?). Also adrenal nodules were seen at the same time.
I’m at a loss of what to do here. I’m so worried, it’s causing me great stress. My kids need me healthy. We can’t both be ill. I need to be strong and healthy for my fiancee and my kids. Does anyone know what testing I could be asking for, or have experience, or even just opinion as to what is going on, and how to proceed? My ultimate question is, what is the prognosis, and treatments available?
Mbm,
Thanks for your post. Sorry to hear of your fiancées complications! You have come to the right place (I say this humbly), as PH is a distressing condition, and I and the few others I have met along the way have great empathy for what he and you are facing right now.
Please bear with me as I bring you some background in order to hopefully ease your mind …
I have all the same clots which are common to most sufferers, although I have had only one bleed from the upper part of the varices in my stomach, way back in late 2004, in which I came close to being transfused but thankfully the bleeding stopped. I am classified in the less common bracket of non-cirrhotic portal hypertension with an unknown genetic cause. Not comforting but only relaying the realities of this condition to you, that bleeding from the esophagus is the most dangerous side effect to deal with. I am no longer on Coumadin as it does not work on me, however I am on Fragmin injections (heparin) which I have taken now for since 2004, and the dose was increased in early 2005 to 2 injections from one. All being said, the most common treatment worldwide for this condition is to lower the heart rate by using Nadolol (beta blockers) to keep the pressure down in the varices that have formed due to the blood clots in the portal vein that normally affect the spleen and the mesenteric vein. If you find the time I would encourage you to read the various posts on this blog, and with that are some personal stories from others as related to me, and of course many comments.
On Coumadin a person should be monitored to some degree, but I have found for the most part that people, whether they take this thinner for PH or other clotting conditions, come to a point where they would adjust the dosage according to the I/R levels indicated. Be insistent with your doctor that you want to monitor this condition closely and if not that you learn how to adjust according to the blood results. I remember when I was first diagnosed I was initially put on Coumadin and was on it for over 2 years and with that I saw my doctor on a more regular basis, so he would adjust it accordingly. I started with blood work every week, then moved to every 2 weeks until I was placed on Fragmin, in which my levels no longer have to be monitored. There are newer oral meds with less of a history than Coumadin, and you may want to ask you doctor about those also. Whether or not they would work for you your fiancée is the big question, and at this point they may just want to play it safe with him given what he has just been through.
I asked my gastroenterologist just yesterday as it was my annual check-up with her, if there was any new information on the condition, and she unfortunately said no. Most of the research on portal hypertension comes out of the University of Barcelonia in Spain, and she herself spent a half a year there 2 years ago studying the condition, so I feel that I have first hand information in that respect. She has not provided me with all the information on this blog, but much has come through my own research and that of others who have provided me with articles, and stories of their own personal journey’s.
There is so much more I can say, and I want to be careful as to what I say due to the fact that you are still learning about this. It is great to have a support system around you especially at a time like this and I also want to say to you that because I am a person of faith, I will pray for your fiancée, yourself, and your family as you deal with this. Again I encourage you to research the information provided here – most of the main points have been covered, however it is a work in progress as I try to keep up with any new findings. I asked my gastroenterologist just yesterday as it was my annual check-up with her, if there was any new information on the condition, and she unfortunately said no. Each one of us are different for sure, but I have lived 11 years beyond my original diagnosis, and I attribute this to the doctors who have really gone to bat for me, the meds, and for my family and friends who have supported me with their prayers and love along the way. The most important medications to be is the blood thinner and a beta blocker to keep the pressure down. I do not live my life in fear, but have felt times of despair as that is a normal human reaction, however I do live a relatively normal life. Hope this helps?
Thoughts and prayers,
Clint
Thank you so much for your reply, it really means a lot to me. Especially your thoughts and prayers, because it seems like at first, everyone (the doctors) were so concerned about this serious medical issue, now all of a sudden, nothing. I will definitely be reading through everything here, I’m so grateful to have found this site. Thank you for this, and everyone else too, who shares their experiences. Thoughts and prayers to you, and everyone else dealing with this.
i suffer from ideopathic portal hpertension now since 1989 and have had several life threating bleeds but was fortunate to have had a mesocaval shunt preformed on me back in 1992 at the royal free hospital in london and hope i don’t need any thing else done
Thanks Kevin … wow what a journey you have had! Although you have had a rough time, it is encouraging that there are procedures like the mesocaval shunt which can extend one’s life!
May you enjoy many more years of great health! Best, Clint
Hello,
A quick update on my condition. Further to my chronic anemia problem. After taking double doses of iron supplements (feramax) my hemoglobin and ferritin levels continued to drop. At the end of June my hemoglobin was 73 and ferritin was 3 so I was referred back to the haematologist. I saw the haematologist at the end of August. My hemoglobin and ferritin levels continued to drop so he arranged a blood transfusion as a quick fix first because I was to go on a 2 week
trip back east. I have had 5 iron infusions as well and am waiting to see the hemo again in mid November. He also referred me for another colonoscopy to check for small bleeds. The hemo suspects slow blood loss in the digestive tract. Clint, I see that you get iron infusions 4 times a year (in your management section). Is this because you have slow blood loss, can’t absorb iron or some other reason. I am debating on whether it is worth asking to be referred to a gastroenterlogist if nothing conclusive is found. Because I live in a small town in British Columbia, I would have to travel to Kelowna to see a gastro specialist. I know the iron infusions are working because I no longer chew or crave ice and my energy level is much better.
I hope you are as well as you can be and thank you again for this wonderful website.
Audra
Hello Audra,
Its good to hear from you again. You are one of the veteran’s on my blog and I thank you for your contributions in the past. Sorry to hear your ferritin/hemoglobin levels are dropping and your subsequent transfusion. You asked whether or not you should see a gastroenterologist and I would highly recommend it! Portal hypertension falls under gastroenterology and to gain a better understanding of your symptoms and treatment you need to see a specialist of this nature as they will enlighten you more on the subject. Under emergency situations a gastroenterologist is the go to person for people such as us. The interconnection with the esophagus, liver, and spleen fall under the area of gastroenterology, and these specialists have a better handle on this as compared to hematologists who focus on the veins and arteries. When I had a bleed in 2004, I was bleeding from the varices in the upper part of my stomach – near the esophagus. In my case I do bleed slowly in my stomach (from the pressure) and my hematologist likes to keep my platelets on the higher side, therefore I have the infusions albeit less often (3 times per year instead of 4). That is interesting that you craved ice … do you know if that is common?
Keep me posted … I trust all will be better for you soon as goodness knows you have had quite the journey also!
Clint