GI bleeds

[jointpain]

My wife has been on 3 anagrelide a day and 1 hydroxycarbamide every other day for quite a while now, they both work very well at keeping her platelets in the normal range. She has been home for a week now after a week in hospital after another massive gi bleed while in hospital her platelets rose to 700 due to not having her meds for a few days, now on 2 hydroxycarbamide a day plus her 3 anagrelide until next week to bring them down again. Still no reason given for the bleeds but they are asking liver experts in other hospitals as it is likely to be coming from the bilary tree. Possibly all due to the portal vein thrombosis she suffered from nearly 3 years ago when her GP would not continue the heparin after her Splenectomy when the supply we brought back with us from France ran out, she was just told to have an aspirin a day six days later she had her first massive gi bleed, the first of around a dozen now. Does anyone else suffer from such bleeds?

[lizzziep]

I've had a lot of blood in my urine, and after numerous tests they couldn't find why, so it was put down to the ET. Fortunately I haven't had any of that for 12 months now. I have terrible bleeding gums, which dentist says is made worse as a side effect of ET and drugs. Hope she can get sorted out soon.

[Pte82 in reply to lizzziep]

lizzziep, have you had a chance to try liposomal vitamin C for your bleeding gums I mentioned a few months ago?

[lizzziep in reply to Pte82]

Hi, I’ve been having treatment at the dentist for plaque removal and deep cleaning. I’ve also bought a water flosser which has also improved the situation. I have yet to try the liposomal vitamin c, but I will keep it in mind. Thank you .

[CarpeDiem11]

Hi, I came across your post while searching for something else and just wanted to say that this is not acceptable. I have had extensive portal vein thrombosis, which was resolved with heparin (within 6 weeks) & I injected daily for two years, until very recently changing over to warfarin. (After 2 years of daily injections, I had had enough and wanted to swap. GI bleeds can be fatal and I am shocked to read that your wife has had so many. When I was seen for the PVT, I was seen by a Haematologist and the only options open to me were heparin or warfarin. There are other blood thinners known as DOACs and NOACs, but my PVT results from a rare autoimmune liver disease and I am unable to take these. Aspirin has never been mentioned as a solution. I would seriously advise you ask to be referred to a Haematologist or Hepatologist who will advise correctly as to the necessary course of action. Due to the risk that the clots will reoccur, I will have to be on blood thinners forever, so stopping them is not an option.

I can totally understand the referral to a liver specialist also. A qualified Hepatologist will be able to advise you as to the cause of the GI bleeds. However, from my own experience I can tell you if the portal vein is still clotted (thrombosed), then it will be causing blood to "back up" into other veins. These veins are in the oesophagus and the stomach. However, these veins were not designed to take this much blood and over time the increase in pressure on the vein walls will cause the veins to burst. At this point, a bleed will occur. It's a bit like a motorway. The portal vein is the motorway, but if there is a clot there, it is like one or more lanes are closed.

The blood still has to go through to the liver. So the cars (blood) are diverted onto A and B roads (the other veins). These roads also become "clogged up" and finally come to a standstill. The cars are still trying to get somewhere, but the roads can't cope. Finally the veins give out.

I hope this gives you a clearer picture of what is going on (and I didn't oversimplify it). Fortunately, I have had just one bleed. The usual course of action is to have carvedilol ( a beta blocker) to reduce pressure on the portal vein and then have regular endoscopies (yearly, although this may be more frequent at first in order to eradicate any varices (swollen veins) that exist.

I hope this was helpful and please insist on a referral. I speak from experience of liver problems over many years. Your wife must be one tough cookie to have survived all this so far and I wish you both all the very best for the future. Please ask if you need further clarification.

You could also read publications from the British Liver Trust, which will give information about varices, endoscopies etc and they have a nurse led Helpline, if you aren't already aware of these. Good luck.

[CarpeDiem11]

Hi again jointpain. I realise that my last post could sound very alarmist, so I will just say, given the correct treatment, your wife should be able to avoid further GI bleeds. However, I have no idea how her condition will alter the possible meds she will be offered, since I do not have this condition and do not take any of these meds. The PVT is likely to be caused by problems in the liver, which is why a Hepatologist is being suggested. All the very best to you both.

[jointpain in reply to CarpeDiem11]

Hi CarpeDiem thanks for the reply/novel!! The first to actually address the question. Still waiting for a referral to a Liver expert, but dealing with ineptitude at the moment, as the hematologist upped the hydroxycarbamide by four hundred percent on leaving the hospital, which we questioned three times. After a week blood tests showed platelets at 90, hydroxycarbamide then lowered to one every other day and anagrelide lowered to two a day instead of the three a day. After a few days bruises appeared all over and nosebleeds. Told to stop hydroxycarbamide and anagrelide, last Saturday on Tuesday blood tests showed platelets at 55. So now nothing until next Monday when another test to be done. She had been on carvedilol until the day before she had her first massive bleed this year, in January, when it was changed to Propranolol. With over 500,000 people in Wales waiting for hospital treatment, rather than investigate why these bleeds and where from, the consultants are more than happy to do naff all and fill her up with blood each time it happens, after being brought in by ambulance.

[CarpeDiem11 in reply to jointpain]

Carvedilol & propanolol are both beta blockers, but carvedilol is the one being studied now as a future treatment for varices, instead of the endoscopies. They both do the same thing as far as I know.

I know nothing about those meds you mention, so can't comment on those. In my case, liver scarring has caused the clotting in the portal vein, the main vein serving the liver. A drop in platelets below 150 is an indicator of portal vein issues.

Drops in platelets, for those of us with liver issues, usually occur because the spleen is " gobbling them up", but there can be other reasons I'm sure. The fact remains, your wife needs to see a Hepatologist & to get a clear treatment plan. Sorry to say this, but it looks as if the current team are out of their depth with the necessary knowledge.

Sorry about the novel😉 Wishing you both success with speedy referral. Get your GP to do this & be insistent.

[hunter5582]

CarpeDiem11 is correct. This is unacceptable. This could range from something simple to something quite serious. It is a core truth that assertive patients receive higher quality care. Passive patients do not. It sounds like this is a situation where very strong advocacy is needed. The correct action is not to ask other experts at hospitals. It is to refer your wife to those hospitals/specialists directly. This most certainly needs to involve a gastroenterologist, hepatologist and a MPN Specialist. Note the latter is not just a regular hematologist. Most docs do not have the KSAs to provide optimal treatment for MPNs due to their rarity. The kind of medical centers where you will find MPN expertise would also likely have the level of expertise needed for the current situation. Most importantly, these specialists need to collaborate and work as a, integrated care team. Here is a link to MPN Specialists. mpnforum.com/list-hem./ .

All the best to both of you.