Hello

[sgolas]

I am new here and just wanted to say that I am 33 years old. I had 3 strokes by the age of 21,, mitral valve replacement. I just had my second mitral valve replacement last year and I chose to get a mechanical valve instead of a tissue. That being said, my INR does not stay consistent, it is up and down like crazy. Any advice? Also my face started going numb 3 weeks ago I went to the emergency room and they said it was not heart related but they do not know what it is. Could it be stress?

[Hidden]

Hi Sgolas and welcome to the ACE community of HealthUnlocked. Well now that you have a mechanical Mitral Valve I guess that you will be on anticoagulants for life, like many of us, and for the time being that is likely to be Warfarin as the new oral anticoagulants aren't approved for valves (yet?). INR testing is of course part of our lives on Warfarin and many people find it goes up and down quite a bit, that's why we have a "therapeutic range" to aim at rather than a fixed number.

Many things can make your INR fluctuate but the main things are what you eat and drink and other medication. Cranberry juice and many green vegetables which contain Vitamin K will make your INR go up. Alcohol will affect it too. Other medication will affect it in varying degrees and most common are pain killers. Aspirin will affect it as will pain killers like Nurofen or Ibuprofen. The only pain killer I can manage is Paracetamol and then in very moderate daily doses. Anti-inflammatory medication can have a big effect too.

Many of these things cannot and should not be totally avoided but generally it is reasonable consistency and not binging which is the key. You will quite quickly learn how your INR responds to different foods and medication and then try to keep them reasonably under control.

Most patients manage to stay in therapeutic range only 60% to 80% of the time but those who self test and self manage their anticoagulation stay in range much longer. I stay in range over 90% of the time by self managing. Have a look at anticoagulationeurope.org/ and subscribe to their quarterly magazine, "INReview" and you will learn much more about this.

Stress and Anxiety never helped anyone so try not to worry about it. You probably have an INR therapeutic range of 3.0 to 4.0 so try to stay in it but if you occasionally find it down between 2.0 to 3.0 or up to 4.0 to 5.0 don't be too surprised. Your medics will for now keep adjusting your dose to help get it right.

All the best and do please keep in touch and let us know how you are getting .

[daisyd]

Hi, have the Doctors told you why you had the strokes as I have said before I have Antiphospholipid syndrome (Hughes) sticky blood, it would be worth taking a look on here,

I have mitral valve problems which often comes along with this condition.

Some people on the site have changed from Warfarin to Clexane injections with good effect. I have my INR in the range of 3-4 and have injections to give myself as well if under 3

I don't know what I would do without my coagucheck machine I test when the clinic advise regularly, but also when I have a headache, or symptoms which I know means it's out of range

Very reassuring, good luck hope you feel better soon

[Tipper]

PBirt is spot on but...he's got a typo in his reply! Sorry PBirt.

Green veg, vitamin K and the likes of cranberry juice will drop your INR, alcohol raises it fast.

I work on the basis that NSAIDs are a no-no too.

Self INR testing and adjusting your warfarin is the way to go as you can effectively manage your INR based upon your experience of what you eat/drink and therefore achieve very close control of your INR. Like many others I keep my INR in range far far better that the clinic ever did! I work on the basis of adjusting my warfarin rather than avoiding particular foods and drinks.

My INR range is 2.5 to 3.5 with my mechanical mitral valve. Keep on ticking!!

[sgolas]

Hey, I just wrote a whole three paragraphs and it got deleted so I will sum it up. Thank you for speaking with me I truly appreciate it. PBirt I have been really stressed out lately I am trying to calm myself down My range is 2.5-3.5. Is there any tips on how to make it not tick as loud, I can not sleep at times because it is loud to me. Tipper do you adjust it on your own because I feel that the nurses do not know what to do sometimes! LOL I am going to look at the magazine because I have had this valve for two years and have not had any one to really talk too.

[triff in reply to sgolas]

Hey sgolas! I've had a mechanical mitral valve for just over two years after endocarditis destroyed my old one, I was post-op and getting my strength back whilst still beating the infection and trying to get used to the ticking. I asked my surgeon one day if I should be worried about the ticking getting louder, he told me not to worry about it 'cos it just meant my heart was getting stronger. Iit pretty quickly stopped being annoying. You've just got to learn to love it.

I've only just discovered this place and it seems good, but I can recommend another forum at valvereplacement.org/ which helped me a lot with questions about valves and INR after my op.

[Hidden]

Hi again. I used to be on 3.5 to 4.5 for my mechanical Aortic "clicking" valve but we reduced it to 3.0 to 4.0 after 6 months. I found 2 solutions to the clicking valve which will not help you at all. I put on weight which insulated it and I went deaf , seriously, so I don't hear it now. I guess you just get used to it and eventually stop hearing it but it is one consequence of a mechanical valve rather than a tissue one. At least it will last longer.

I also test my own INR with a CoaguChek (self testing) and adjust my own Warfarin dose (self managing). Statistics show that particularly those who self manage tend to stay in therapeutic range more (probably because they test more frequently) but also they have far fewer blood clotting or haemorrhaging problems. Not all CCGs or GPs will encourage it but I would strongly advocate it like daisyd and more patients are going that way now and NICE are even considering advising self managing in new guidance.

Sorry about my poor typing !!

[Tipper]

As PBirt says you will get used to the ticking and won't notice it eventually.

I self test because I can and it gives me much more personal control and freedom, both to test when it suits me and to travel the world if I want to.

I test weekly too and stay on target much more. The clinic or Gp leaving it as long as 6 weeks or even longer was plainly inadequate and checking it weekly means I am staying within my target almost continuously whereas the professionals didn't manage to. I also feel in control of my own health.

Well worth getting a Coaguchek and taking control.

[sgolas]

I do have coagucheck it is cheaper for me and I can do it so I like that. Thank everyone! Oh is there a place where you can buy the strips for cheaper than on the coagucheck website! I lost my job right now and do not have health insurance.

[Hidden in reply to sgolas]

You should be able to get them in packs of 24 or 48 on prescription from your GP as I and many others do. Some GPs won't, because of the cost or disapproval of self testing and some blame their CCG for stopping them. The GP always has the final word to persist with him/her. Otherwise I have never heard of an alternative, cheaper source, sorry.

[Hidden in reply to sgolas]

G'day sgolas,

I get my test strips on NHS prescription. I usually return to Australia every 18 months or 2 years for a holiday and just tell my GP I'm off on my travels can I have some ..... I never tell GP that I want a repeat prescription. Not useful, just make up a story and say you are off travelling and you want Test strips on prescription.

I would NEVER, NEVER EVER buy test strips online. Only from Coaguchek. There is a technical bit in the strip which is vital - called a Thromboplastin Reagent. This is part of the process in arriving at your INR. These Reagents are commercially produced and vary in quality. Coaguchek use the highest quality ( and are the most expensive ) but you can get cheap ones. You can bet anything you like the risk of buying cheap stuff online will give you a false reading for your INR, that will impact on your warfarin dose ..... and then you are on skid row Be careful.

Worth a try with your GP anyway if you haven't already done so.

Good luck.

John