sludgy blood : Hi everyone, please can... - Hughes Syndrome -...

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sludgy blood

Sevenstar1
Sevenstar1

Hi everyone, please can anyone tell me if you can feel your blood going sludgy or sticky on a day to day basis , how you can tell , how you feel and what do you do about it ?

I'm having bouts of extreme fatigue and wondered if that was why !

36 Replies
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Having been here a while, what I have learned is that there are people who can tell, and people who can't. I can't.

After >4yrs on warfarin I still have no idea what the result will be when I test.

No correlation with how easy or hard it is to get the blood out - I can spend ages (and waste test strips) trying to get a drop of blood and then find INR is high, I can squirt blood across the room from first fingerprick and then find INR is low.

I can feel bad, ill, off, and find INR is high, I can feel good, fit, well, and INR is low. If there is any correlation it is that way round, for me. I don't think it is cause and effect though, I think it is more likely that any slight illness increases my INR so when I feel worse my INR tends to be higher because I am fighting off some bug or other.

But that is me, we are all different.

Record your symtoms, record how you feel, record your INR, after a year or so you will have enough data to be able to see any patterns and may be able to predict in future, maybe.

Sevenstar1
Sevenstar1 in reply to Ray46

Thanks Ray46 , really appreciate all this info , its all new and a lot to digest for me but it's so interesting to hear all this !

Many thanks for your reply .

Holley
Holley in reply to Ray46

Ray46 summed up my thoughts exactly!

KellyInTexas
KellyInTexasAdministrator

I think it “can” be a very good indicator.

There can be a lag time also- a low inr may cause symptoms the next day or so.

A migraine often will be a lie inr in real time.

I can also have a migraine with an inr in therapeutic range, but I can guarantee a migraine in its too low.

KellyinTexas and Ray46 ..... Thanks so much guys , can I ask 'do you ever have days when you feel 'normal' I'm beginning to despair 😩 that I will never have a normal day ! I'm not actually on warfarin as touch wood no clots (as yet) with my APS so I'm just on Clopidogrel but the fatigue is something I can hardly deal with ! Feel soooo fed up at the moment ! Thanks again!

KellyInTexas
KellyInTexasAdministrator in reply to Sevenstar1

Well, today for me is a better day than yesterday....

Sometimes that’s as positive as I can be.

Yesterday I felt, “ homesick” for the old “me.”

I guess I let it get to me and I should not have- but some days I am tired and I feel trembly inside .

The weather was beautiful! We live on a lake. We have had storms, and have many branches fall. We now have them cut and in a metal fire pit ready to burn.

I was thinking how nice it would be to sit at the lake with my husband and son after dinner at the end of the day and make s’mores. And have a scotch and sparkling water on ice.... just like old times...

But I can’t have alcohol anymore- INR issues plus horrific headaches. Plus I just didn’t feel in true health and carefree and happy... I felt weak and a bit trembly... and it gets worse and evening comes.

Now those days are usually not often that I feel homesick for my old life. It takes mental discipline to not fall victim to that and I will tell you normal I do well.

Why? How do I manage to do well ?

Because I am for the most part better on the warfarin when I take a step back and look at the big, over all picture. I’m not having bowel obstructions anymore- no more surgeries all the time! Warfarin fixed that! That has really improved the quality of my life 95%.

The APS has continued to progress in other areas though. My migraines are worse. Congitive function is declining.

I keep making DVT’s despite warfarin. However, since raising the inr quite high and adding rituximab I’m better in that regard.

This is not the case for everyone.

Warfarin should help quite a bit with severe symptoms.

It will not be a perfect cure, so I don’t want you disappointed if you are started on warfarin and don’t have 100% resolution of symptoms. APS can be a progressive illness.

At the same time, you should absolutely have a lot of hope warfarin will give you tremendous help. ( just not a cure.)

What I will tell you, is that what I am hearing missing from your story is hydroxychliroquine.

It can halt progression of auto immune disease and help with symptoms of fatigue.

Also, please ensure your vitamin b12, iron, ferritin levels, and complete thyroid levels are in optimal range.

Oh thank you so much KellyinTexas, I really get what you say about 'homesick' for your old self, I miss the old me , life and soul of the party now all I want to do go to bed !

On bad days I just think I can snap out of it but I really can't !

It's wonderful to be able to chat to all you knowledge guys with a so much experience and information to share! I was only diagnosed just before lockdown and feel scared a lot of the time as there seem to be new symptoms every week!

Anyway appreciate your words ,thx

Gmagolf
Gmagolf in reply to Sevenstar1

Ask your doctor about Plaquenil. It helped me so much with the fatigue and joint pain. Still have them, but I do have lots of “normal” days.

It takes about 3 months to feel the effects

Sevenstar1
Sevenstar1 in reply to Gmagolf

Gmagolf .. thank you so much , I will ask , I'm so glad you have normal days, that gives me some hope !

MaryF
MaryFAdministrator

If your INR is not on target you may well feel more tired, and also if your Folate, Ferritin, D or Thyroid function is low, that will also greatly affect how you feel, and also viruses can hang around and add to the symptoms party! MaryF

Sevenstar1
Sevenstar1 in reply to MaryF

Thanks MaryF , please do you have any normal days , is there light at the end of this dark tunnel I'm in ? Thx

MaryF
MaryFAdministrator in reply to Sevenstar1

One thing that made me a lot worse was gluten, gave that up years back, and also my slow Thyroid which was missed for years and years by the NHS due to the over reliance on one very unreliable test the TSH. So ordered my own panel, and it showed I did have a Thyroid problem, which was making me unwell, also my B12 was low and my D and everything else despite my best efforts, all much better now. It is good to rule out all the additional things that can add up to make you feeling very unwell on top of what you are already dealing with. MaryF

Sevenstar1
Sevenstar1 in reply to MaryF

Gosh Mary that's interesting, I had a Coeliac test which was negative recently, but I tried giving up gluten but only for a week as an experiment in case it was just an intolerance and I have to say I did feel better and less tired but gave up when my husband started making delicious sourdough bread ! I might try again. My Vit D and B12are excellent and did have full panel Thyroid which was also good ! It's like a jigsaw really and the fatigue is hard to explain, like I'm trying to wade through water ! Thx

MaryF
MaryFAdministrator in reply to Sevenstar1

This may be of interest, bmj.com/content/351/bmj.h4347 MaryF

Sevenstar1
Sevenstar1 in reply to MaryF

Thanks Mary , I will take a look !

I do wish it was that ‘easy’ for me to feel better. I wish I had issues with my thyroid or something that could be controlled.

I definitely get worse each year and although I do push, I am able to do less and less.

I had the range of private blood tests suggested.

My thyroid is spot on fine.

My B12 perfect.

Iron/ferritin great.

Vit D a little low but nothing to worry about.

In fact all my bloods are fine, yet I feel terrible.

I have had three INR tests (I have one a week) this year in range, despite sticking to all the rules! It seems the three in range were more than likely taken when I was passing through on the way up or down. So a fluke!

My readings have fluctuated between 2.5 & 16.8 this year. I’ve taken Vit K to bring it down and clexane to bring it up. I’ve been in hospital for monitoring. Whatever I do I just can’t get it right.

I Have a marvellous Haematology Nurse and Haematologist, who do their very best to no avail.

Clexane makes my stomach turn black, after one injection so Clexane long term is out. I am unable to take other anticoagulants or hydrochlorocloxoquinine, due to the heart condition I have (Long QT) I take Mepacrine instead and Azathioprine and Steroids but they definitely are no substitute.

Sorry to be negative. I know that you have to fight it for as long as you possibly can and I have fought all my life. My symptoms began when I was 11 (I’m 54 in a few months) I wasn’t diagnosed until about fifteen years ago.

Good luck 💋

Thanks Wendy , it's all a lot to digest at the moment but the worst symptom of all is the fatigue. Many thanks for all your info !

MaryF
MaryFAdministrator in reply to WendyWoo50

It is so difficult isn't it, I know gluten made me worse, but even with the things I do, and that is a lot with my diet and exercise I still get some very bad phases, here is hoping that we are all due a good one.

MaryF

WendyWoo50
WendyWoo50 in reply to MaryF

I’ve been in a flare for 27 years

I also tried a year off:

Gluten, yeast, wheat, sugar, mushrooms, lemons, strawberries, lamb, melon, Dairy, marrow...

Had minimal fruit/fruit sugar.

I lost a bit of weight but no change to my symptoms. The only cheat was a slither if my sons birthday 🍰 cake. So after 365 long hard days I gave up on diets!

MaryF
MaryFAdministrator in reply to WendyWoo50

Oh that does sound tough and, sorry, I think we can all relate to that. MaryF

Gmagolf
Gmagolf in reply to MaryF

Gluten free has also helped me

I hate when any of us are having an off day...I have many normal days now that ive improved/gotten much better after my stroke but those blue days can really set us into turmoil... best to try to catch thus symptoms from the beginning of them and work to get to a better emotion as soon as you can. Its easier said then done but for me that is best. The tiredness comes from our mitochondria fighting so hard. Ive been on plaquinil since the strokes- had two possibly three back to back. I was started on the plaquinil from discharge after stroke(s). My antibodies seem to stay in check when tested so i assume its doing its job😄

Sevenstar1
Sevenstar1 in reply to Wittycjt

Thank you Wittycjt ... thank you , yes feeling a bit /lot sorry for myself today ! I really appreciate all this info , it looks like I have some research to do on all this but it really helps being able to ask questions from you all and hopefully learn from the answers. Many thanks

Wittycjt
Wittycjt in reply to Sevenstar1

Believe me we all understand- just dont want you to waste one more minute/ second.I want us all to feel the best and be the best we can every day😋

KellyInTexas
KellyInTexasAdministrator in reply to Wittycjt

That’s absolutely right! ❤️

Hi,

Many people have no idea but I usually can tell. My range is 3.5-4.5

If under 4 I have horrendous headaches For days on end and have zero energy.

When over 7 I have terrible pains in my large leg muscles and also want to sleep a lot.

If my blood is thin after being thick I get sharp stabbing pains in my head. We believe this to be micro-clots that had formed moving.

I’m 7 at the moment and unusually for me I also have a terrible headache. So I’m perplexed 🤔

Sadly, fatigue is a major symptom of APS. I hope you get all the help you need. Good luck 💋

Thanks Wendy . All these answers are so helpful!

KellyInTexas
KellyInTexasAdministrator in reply to WendyWoo50

Wendy, something that can happen to me when my inr goes too high is I can now get migraines. How annoying! Kind of a new trick APS has thrown at me.

It used to be it could go to up 7 or 8 and I would do ok- of just get it down. But now I never know if it’s too high or too low..

When it’s it’s high and I have a migraine ( 8.8 with severe unusual migraine) I had a brain scan. CT. No bleed was detected.

It’s now as if my body has a more narrowed parameter of INR it will accept to be migraine free. ( 5.3-6.4) by vein. I don’t like it over 6. My target is 5.5 with range set 5.0-5.5

There are a few of us - very few - with it set this high- but only after demonstrating repeated clotting with DVT’s at lower INRs, being switched to other anticoagulant therapies, Combination of therapies... and failing them. We’ve tried literally everything- except fondaparinux.

Again- a synthetic heparin. It’s only given once a day. And my consultant said it doesn’t sting. ( added bonus!)

You might not bruise so much with it. Not sure? Why did you bruise so much with LMWH? Are you having platelet issues?

I really am wondering what your hematologist would think about it. What it’s advantage might be ( if any) with regards to bruising.

Thank u for replying Kelly, I appreciate ur giving me time.

I’m in a very bad place mentally (not like me at all) I have emailed my rheumatologist in hope that she can help.

My stupid genetic electrical heart condition means many many meds are too much of a cardiac arrest/sudden death risk so they won’t entertain them.

Everywhere I look is dark and every door I try is locked. 😢.

I hope ur doing better now. Thank u 💋 x

KellyInTexas
KellyInTexasAdministrator in reply to WendyWoo50

Well, let’s see where the question goes with fondaparinux.

It may or may not be an option- but I think it should be asked.

The advantage is a tiny amount of clopidrogel can be added to normal Clexane so I would think the same would apply to fondaparinux. Perhaps you had a bit of clopidogrel with the clexane- perhaps too much for you? So many tiny details I could never nor should I hazard any guess. That’s for your hematologist.

I would hope if your inr ( or theoretical equivalent there of-) could stabilize, your emotional state would stabilize. When we know our blood is not safe, not only does it very justifiably cause anxiety, but physically it’s extremely difficult as well.

But I’m not telling you anything you don’t know... I’m just letting you know very clearly that I truly hear what you are saying.

I have other concerns and questions about fondaparinux, or Xa blockers in general.

Again, prof. Beverly Hunt does advocate for it in resistant APS, ( difficult to treat APS / refractory APS which to my knowledge is not what you are experiencing) and says it is good with addressing neuro symptoms and complications.

Note: resistant or refractory APS is Clotting through Multiple anticoagulant therapies Despite being in therapeutic range.

There may be other times when fondaparinux might be tried, for example, like your heart condition.

My personal feeling is that it warrants asking. Better control over the thick blood should in theory result in better control of APS symptoms, and therefore allow you to recover from a depressive state- with the help of other therapies should you need .

Added benefit may be that being off of warfarin might allow for a pharmaceutical to be brought on board, even temporarily to kick start boost you up as it might not interfere with warfarin. Would that not be AMAZING?!?!👏👏👏❤️😊

Worth asking about!!!!

( my VERY LIMITED understanding is Wellbutrin is one of the few meds that does not promote clotting. However, it would interfere with an INR. Its not a terrible strong medication, can help with focus, and fatigue!)

This is ONLY for a physician to discuss with you, but what I’m trying to help you see , after reading your closing sentence to me, is this:

A window with a beautiful bright view, and an open door with a beautiful pathway outside into fresh air.

bookish
bookish in reply to WendyWoo50

Wishing you peace, light and a key to the door x

Do you ever have a " yeah, now I realize the reason I felt like crap is I was coming down with the flu, and I didnt realize how bad I felt in the days before the flu until I fully recovered and got my energy back" revelation? Those pre-symptom fatigues occur as your immune system hijacks all the energy and support it can in order to gear up and fight the invader. Most of us with autoimmune conditions have hyper-active immune systems that don their battle gear and gear up at what to others would be only minor provocations. Years ago I found I am... allergic? sensitive? whatever? ... to gluten. So with each piece of bread, each penne pasta in mac and cheese, my immune system geared up and that inflammation spread all through my body.

You might try keeping a detailed log of food, activities, INR numbers when taken, sleep patterns, anxiety levels, activities... You may well then be then rewarded by spotting a correlation of fatigue and/or a sludge blood feeling to a food, a place, activity levels, an INR #. Then you or your doctor could synch those clues to changes that can calm those autoimmune soldiers down so they will retire to their barracks for the time being.

And the accuracy of gluten tolerance tests is not good. Even worse if the patient has been gluten free in the days or weeks leading up to the test.

Sevenstar1
Sevenstar1 in reply to GinaD

GinaD. Yes I totally relate to that and those feelings, looking back I can see that now!

I'm going to give the gluten free thing another go , it does seem that an hour after I eaten a delicious piece of warm homemade sourdough bread slathered in butter I need to go for a lie dow ! Even simple pleasures hey ?

Thanks for replying!

I was diagnosed with APS in 1997. I only found out I had it when I was rushed into hospital with a stroke. I spent a month in Hospital whilst they tried to find the cause. Finally I was diagnosed with APS and was able to go home. Ten days later I had another, more minor, stroke and was back in Hospital for another 10 days. It was a nightmare trying to get my INR right and bring the APS under control. Over the next2/3 years I had 3 pulmonary embolisms and a heart attack along with various lesser issues. Nowadays, fortunately, everything is fine. I barely notice I have it. I do my INR tests at home and rarely see a member of the Haematology team. I do feel tired a lot but that could just as easily be due to RA, COPD, or Heart disease. I guess I have been quite lucky as far as my long term outcome is concerned. In fact, of all my health problems, APS is the one that concerns me least. I just wish the same was true of the various other ailments.

Sevenstar1
Sevenstar1 in reply to mickam

Oh thank you Mickam, it's sounds like it was quite a journey to get where you are now but I'm so heartened to know it's under control and you don't notice it so much ! It looks like you have enough of the other stuff to keep you busy ! Thanks for replying!

Absolutely. Low grade headache, crushing fatigue.

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