I’m high again : I give up despite... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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I’m high again

WendyWoo50
WendyWoo50

I give up despite following all the rules, I have only had three INR results (of my weekly tests) In range (3.5-4.5) this YEAR I’ve ranged from 2.5-16.8 this constant sea-saw is literally killing me, I feel.

I have no life now.

I’m feeling so ill all the time. Not lockdown related. It’s been getting worse for years but it’s getting that I am able to do less and less.

It used to be that when my INR was high I felt good. Now that’s not the case, my leg muscles hurt, I have chest pain and now I’m suffering with terrible headaches when I’m high as well as when I’m low.

Does anyone else have terrible headaches when they r too high?

I’ve been on Warfarin for 5 years on 4 July. I cans change from it because of a heart condition I cannot take other antociags.

I just want to know if anyone else has high INR symptoms? Thank you 💋

26 Replies
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Hi Wendy,

I should know but I have fogotten if you selftest? I guess you do with your problems and as you have to stick to Warfarin if I understand correct now?

You should selftest and do it rather often. If you do not test your blood you do not know what INR you have that special day. I selftest every second or third day and also every day if I have to keep it in place with tablets and greens. Take Fragminshot if it is under an INR of 3.5. As i test so often I will not let my INR go very high or very low. I can adjust it at once.

How about you?

WendyWoo50
WendyWoo50 in reply to Lure2

Because my INR is so often high I need to have vein tests frequently so self test wouldn’t work. The testers are inaccurate when INR because is too high

Lure2
Lure2 in reply to WendyWoo50

Hi Wendy,

Sorry about that. I must say that I do not understand that.

WendyWoo50
WendyWoo50 in reply to Lure2

The anticoagulant hand held machine is only accurate up to an INR reading of 6. Over 6 it cannot be relied upon. Therefore when I have a high reading I have a vein test too.

If I home tested, I would still need to go to hospital to have a vein test anyway.

So it is not worth paying out all that money for home testing equipment.

I have been told it isn’t beneficial to test more than once a week routinely.

That’s what I meant 💋 x

Wendy

I had the same problem. Never got to 16, but I was either high or low no matter what I did. Diet is 95% of the problems. We need those dark leafy greens but they mess with our inr. I tried not eating them at all but that made INR high. Are you familiar with Dr Gundy. He talks about how if your gut isn’t healthy you can’t be healthy. Leaky gut! I started fasting 12-16hrs a day (not hard because you sleep at night). Then I do a smoothie with berries, spinach, etc...

It’s been 3 months Inr is in range & I can eat vegetables without the crazy fluctuations. I also feel so much better.

Another website that really helps me to understand why my body hurts is Dr Terry Wahls. She has podcasts with many people. If you are not familiar with her she has MS & was in a wheelchair. She cured herself with diet. She has lots of information about diet, supplements, and the autoimmune diseases. Even though she doesn’t mention Hughes/APS it is a autoimmune disease. One of my favorite items is the Dr. Nicole’s Apothecary’s drops. The leaky gut, Reishi, Lions mane, Turkey tail mushrooms. There is a few others I use. Everything I tried has helped quite a bit. Before doing this I had INR high then low, bloody noses, large bleeds into the muscles with hematoma. I was where you are ready to give up. I hope you look them up.

Designer16

GinaD
GinaD in reply to designer16

Ditto! You are what you eat.

Can you switch to lovanox or heparin?

WendyWoo50
WendyWoo50 in reply to GinaD

Apparently not! 😢

So sorry you are having a rough time with your health. Do you ever think that all those people complaining about lockdown should try doing it and add it what we have all been through and then they would find lockdown quite bearable ! I had one episode where my Warfarin went out of range but after a few weeks it settled. It was a tough time so I can understand how frustrated you feel. Yes I also get headaches if my warfarin is either too low or too high.

Best wishes hope you get it under control soon. I found mine went madly high when I had Benecol products (yoghurts or drinks)

Kaz x

Thanks Kaz, ur right there. I’m used to being home but now my family is here all the time it’s actually more difficult Plus they won’t provide the personal care I need. There idea about tidiness is different to mine. But the company is nice.

I’m sorry u suffer when out of range, I used to be ok when high but not now.

Benicia - interesting. I wonder why? I don’t have them. Just the odd Activia Yogurt.

Keep well x

I was told it was due to the plant stanols which lower the cholesterol. I guess they act a bit like statins. I am like you I quite like my me time but you can have too much of it. All down to balance.

Kaz

Hi Wendy.

I also have a range of 3.5 - 4.5 and my score varies wildly with Coagucheck. And I was widely out of control for a while (although I never got above 12), so hey something about boats and both being in the same one,comes to mind. What worked for me was sitting down with my wife and deciding on a new way forward.

Firstly, I kept a daily diary of everything. What I did, what I ate, how I was feeling, any aches and pains, and each day I gave myself a score between 1 and 10. 1 being unable to get out of bed, feeling like the world was ending and 10, everything's wonderful and ready to "Save the world". Also keep any INR scores for that day. After a while, hopefully you will notice doing A changes B.

Secondly, this worked for me, I'm not saying it will help you and I don't judge. Stop feeling sorry for myself, and accepting that there are people a lot worse than me. And most importantly, "Chill" - take notes, but stop worrying.

On a side note, and I verified this with my Heamotologist (get one of those!). A high INR doesn't mean your going to just bleed too death. But it will be harder to stop bleeding once you've started. So stop letting the INR clinic wind you up like they tried with me. Try taking Paracetamol instead of Cocodamol for headaches, works for me, but I don't know why.

So chill babes, take out easy. Remember your not alone in this world and people care.

Gordon

WendyWoo50
WendyWoo50 in reply to GordonL

Thank you. It is a bugga isn’t it.

I’m usually a very positive person my job is a life coach and Reiki Teacher and I do live the life and walk the walk. But when every single bit of You hurts and you can’t think because your head hurts so much it’s impossible to keep positive 😢

It sounds like your wife is very supportive, that’s wonderful- my husband is totally fed up with me and not empathic at all anymore. I’m not supported at home and have to find my own way through each bad day. Not easy at all 😢

Gdnskye
Gdnskye in reply to WendyWoo50

Wendy, I apologise for the essay, make a coffee and put your feet up whilst you read it.

My heart goes out to you. My wife now is my second wife, my first left me as she couldn't cope with my illnesses. I've had ME and FM, for 20 years, only diagnosed with APS a couple of years back but it's likely I've had that from the start of the ME days as well. So I DO understand.

It took me a long time to realise that the ME/APS had been just as hard on my first wife as it had been on me, but for different reasons. The thing I had to learn about the daily goal posts of what to do, is that they change everyday.

Find an absolute minimum you need to do each day. With me its now get out of bed, brush teeth, go downstairs and look at the garden out of the window.

Anything I can add to that is a bonus. But everyone is different, everyone has different wants, needs and abilities.

My wife is also my paid carer, so she says herself, she is paid to help and make things easier for me. So she can see how I am each day, and what help I need. That also may be a way forward for you and your husband. On a side note, my teenage daughter is a child carer. She gets recognised with the local council and has access to child carer group with that. My wife also has support available. But she chooses not to use it.

Talk to your husband the same way I had to approach the subject with my current wife. Ask them what they want from you and what they expect you to be able to do and try and find a compromise.

I also can only take Warfarn, but for me it's due to the number of clots, and a PE I've had. But if you can get it under control it's fine

Get yourself a Haemotologist. They are great for putting your mind at ease and getting the rest of your varies medical peoples all on the same page and pulling in the same direction. People don't argue or second guess a haemotologist as they are THE blood guys and galls.

The most helpful advice I ever received, was from the GP who I was with when I started the lifelong Warfarin. Learn to manage your Warfarin dosage yourself and learn everything you can on how Warfarin or "a vitamin K inhibitor" works in your body. You will then understand how the varies types of food you eat, effects your score as well. If your forced to have the INR clinic manage your score, be able to double check them. That ability has quite literally saved my life on at least four occasions. You will be surprised how little the people who manage your dosage actually understand about how Warfarin works, and usually are reliant on a computer which people are quiet apt to give wrong data or misread the results. The best one was when I was "advised" to daily take 8 x my normal dosage and come back in 2 weeks. Needless to say, I didn't.

Take care.

Gordon

Jonr
Jonr in reply to Gdnskye

A very good post👍 How you describe your day is how I feel.. , I try to plan something but often I need to postpone. I have energy in the morning, and suddenly the fatigue comes and just not able.... my gp says I have been burned out, it seems right. Hope to get more energy 😢

Hi Wendy, I totally know what you are going through. My INR is never stable and when too high the headaches are so bad I feel like I’m going to have a stroke. My vision goes blurry and my balance is so bad I can’t walk very good. I also lose my appetite, and yes I feel like I’m going to expire at any moment. As far as my INR being low, I get sluggish, no appetite, and drepression. I am presently designing a consistent diet with the exact same amount of vit k1 and K2 each day. The diet will be healthy but repetitive. Note: Jennifer Anniston eats the exact same diet everyday. She says, I eat to live, I don’t live to eat, and claims she’s never been sick, moody etc. So I thought hey, I’ll try that too. It’s a big job putting it all together making sure all dietary needs are met, but I’ve read, it really does keep the INR more stable. Maybe then my stress level will go down, which doesn’t help with how the warfarin metabolizes in our bodies either. The other thing is to maintain a consistent amount of exercise, rather than irratic exercising. I.e. I would do walking one day and then a full blown weights, yoga, jogging the next. That was too stressful, so I take it easy. I guess all I can offer to you at this time, is easy does it and consistency will make all the difference, that includes getting to bed same time every night and up the same time every morning. I don’t know if this will work for me, I can only try and hope. There is an online site called Dr Gourmet, and he has hundreds of recipes with the k content in each recepie. It’s an easy way to track your k. at the same time you have a recipe. The recipes are delicious. You’ll be ok Wendy. Our bodies are power houses, and they are rebalancing every second of every day, we just have to help them out a little sometimes, by doing our part. I hope I’ve helped! All the Best. Holly

WendyWoo50
WendyWoo50 in reply to hihannula

Thank you for your kind reply. I’m sorry you have this too.

Everything is too much trouble at the moment.

I’ve fought, researched, questioned, been to just about every complementary therapist alive, (spending an absolute fortune) I’ve tried most weird and wacky diets out there over 42 years.

Now I’m disengaged and apathetic 😐

Bearly having the energy to shower and dress. I have no support at home so changes are difficult. My husband cooks and does not even try to understand Warfarin. He gets cross when I ‘don’t eat the mound of greens he gives me one day. Or when I suggest we have greens with another meal he gets stroppy coz he wasn’t going to bother. I wish I could do it myself. When u can’t u have to be happy for what you get 💋 x

Lure2
Lure2 in reply to WendyWoo50

Hi Wendy,

I just wonder if your husband could be willing to read "Sticky Blood Explained" by Kay Thackray if you ask him?

Perhaps you have read it and have it at home. I have written about that good book for

several years especially when I was an Administrator here.

I do not like that your husband gets cross at you when you do not eat the amount of greens he gives you. You must of course self decide about the food you eat and especially about the amount of greens you eat each day. Hope you can get him to read that book so he understands how important it is.

I always eat greens and if I am high one day I eat less greens that day and selftest the day after. That way I can have control of my INR. If my INR is too low one day I first of all take a Fragminshot (that does not make you clot, but does not change your INR). I also eat more greens to get my INR up when it is too low.

Always make notes of everything you do. New tablets, amount of Warfarin tablets, exercise, INR, greens, etc etc.

Kerstin

Lure2
Lure2 in reply to Lure2

Sorry, It is too late. I have done wrong again. The second time I do it. It is difficult when you shall write less and more etc in English.

If I have too high INR I should eat MORE greens to get it down. If I am too low I should eat LESS greens.

hihannula
hihannula in reply to WendyWoo50

Hi Wendy. I’ve been there. Exactly where you are at, and having to ask or get help from others who are behaving in a manner less than considerate and understanding is added stress and guilt placed on you. Not very fair at all. Maybe try to do as much as you can for yourself and push a bit more to regain some control. I’ve had to that on several occasions as hard as it was, but made me feel better about myself. I wish you the best and remember we are all here for you always!❤️

Hi Wendy, I often get headaches if my INR is too high, I also get headaches if my INR is too low. They are not bad headaches but I do take amitriptyline to control my migraine so they might help my headaches too. I also often find my angina is triggered if my INR is too high.

I am luckier than you in that my INR is more stable than yours and I can also use a self testing machine. You are right that they are not accurate if your INR goes too high so I can see that they would not be suitable for you. I’ve only ever been just above 6 and then only a couple of times and that’s in 15 years.

But I do wonder if heparin injections would be better for you, are these not possible with your heart condition? Some people just cannot stabilise on warfarin no matter how hard they try but it must be incredibly difficult for you if warfarin is the only anticoagulation you can have. Have they tried you on acenocoumarol (sinthrome) which is similar to warfarin in that it’s a vitamin K antagonist ? It might be possible that it would be easier for you to stabilise on it as it isn’t exactly the same as warfarin. Worth asking about if you haven’t tried it given that warfarin is so bad for you. Xx

KellyInTexas
KellyInTexasAdministrator in reply to Jumper99

You are also like me on that I’m finding if my inr is too high it can trigger migraines now. This is new for me.

I’m going to look into amitriptyline. Th as no you.

When you are high eat a romaine salad! Vitamin K! One thing Prof. Hughes told me is pay attention to what your body is telling you. How do you feel when it is high? How do you feel when it’s low? The littlest think can be a clue so you can control your INR. When I am low I feel like someone left a tourniquet around my neck. I begin to feel numb & have trouble moving. When I am high I feel great but I get like blood blisters, or a headache. Also, do you take your meds before your blood test. I find if I take my meds before my blood test my INR is high. They tell you it doesn’t matter but I have found it does.

Designer16

I know others have been tried on eliquis when others have failed- i know its not a first-line go to but maybe it could help you. I dont remember what your heart condition is though but maybe you can discuss it with your specialists and see if it is possible for you? Good luck

Have you asked about any of the suggestions?

Hi Wendy Woo,

I know I have answered you several times before but as you have such a difficult time I wonder if I could help you a little perhaps. May I ask you a couple of questions;

What does your Specialist who is responsible for you Warfarin-treatment say about that very very high INR?

Have you had many bleeds when that high? Headache is usual I have heard.

How often did you take the vein-value when you were selftesting and how big difference was it between the two tests when you used the machine at home?

What sort of testmachine do they use where you are? A CoaguChek XS I guess.

That machine had a period with faulty teststrips but later on they were ok again BUT for us especially with a positive Lupus Anticoagulant there could be a glap from 0.6 - 1.0 between the vein and the fingerpricktest. That is what you have to find out.

I think that even with that difference it could be useful for you to have that machine again.

BUT you must test rather often and write everything down with the greens, INR, Warfarinamount. etc etc. You learn and it would be better if you could monitor yourself. That is if you have a knowledable Hematologist with perhaps assistance of the Cardiolog who also knows that it is essential for you to have Warfarin. Perhaps that is the only drug you can use. I do not know if you can take Eliquis (or what the name was) I also have heart-issues.

Lets say you have 5.0 on the CoaguChek XS and perhaps at the same time 4.0 in the vein at a lab. Then you know that your REAL INR-value for that day is an INR of 4.0. Even if it is not quite accurate you know when you are on an INR of 10. and have to take a lot of greens or even reduce your Warfarintablets just a little. Also have a Fragminshot to take when you go too low. (if that ever happens?)

I think you could manage with the back up by a Hematologist who understands how people like us with positive LA have it.

What do you say about this? It depends on the Specialist very much if he can and will understand.

That was a long one....

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