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Sticky Blood-Hughes Syndrome Support
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Right or wrong??

I have been having some very bad infections the start of this year.

Monday i was at my specialist... my blod tests are all fine.

I told them i get pain in my body if my inr is to low.

I get migrane about 3 days every month.

I have upset belly, also related to the pain i get in my body.

And im tirred as .... a lazy Cat.

Now my specialist Said, the infections i had is not related to aps, my immunsystem is fine.

All these minor things i feel must be because i have a poor diet and dont exercise enough.

Aps only make blood cloths, nothing else!

I was upset, but im sure i am right in thinking it is aps making me feel like this. What you think?

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I think you need a new dr x

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The thing is... this is my specialist. If they say this, how can i change their mind?

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I’m so sorry, you must feel very discouraged.

1. What kind of specialist told you this? Your hematologist or rheumatologist? I suspect a hematologist....

2. I’m wondering if your INR is a little low. ( you may be dipping to low off and on because it is unstable. ( labile.)

3. What is your target range and by what clotting history was that INR target set?

( arterial clotting? More than one DVT?)

4. Is your doctor keeping an eyes on your vitamins and mineral level in general? ( b-12, iron , ferritin levels, ? ) . There is an article here on this forum under pinned posts that helps you identify important tests . Are you seeing a rheumatologist? Is your thyroid being checked? Often auto immune thyroid and sjogrins together with APS. Sjogrins can cause bladder infections, ( interstitial bladder) which could lead to kidney infections.

5. A rheumatologist would be able to help you isolate immunological deficits in you blood work, if the basics above are not the culprit.

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It is my rheumatologist that told me this. This time she could not be bothered to see me herself, so i had a new person and he Said the same but he had been talking to her before my appointment.

My own gp listen to me but cant do anything when specialist say this.

My vitamins ect are all fine, my own gp keep an eye on this.

My inr are low at the minute. Due to antibiotic ect

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Nobody has set my inr to any specific. I just asked last time in contact with coaguaclinic if i could be at the highest 3,5 cos im so fine on 4. But this is to high for them 🙄

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Such a typical story, except the infections...

Do you know what your total WBC ( white blood cell count.) is? I suppose with infections it’s going to be high and all over the place.

Initially my INR was set too low. I understand from the doctor’s point of view. I had only had one DVT at that time so it was reasonable to have it set at 3.0, but it kept falling to 1.8, 2.5, etc. I felt horrible.

I was sent quickly to London Bridge where my INR was raised to 4.0. I was much better.

Once home in Texas, A graph was kept. There was a correlation that I noticed - as my INR came up, so did my total wbc.

( low end of normal is just at 5.0. I’m still never up that high, but I’m closer with my INR higher, and feeling better. )

It is not uncommon, so my doctors tell me, to have a lower than normal total wbc with APS.

I however, do not continually have infections the way you are experiencing.

Have you been checked for an immune deficiency? It’s a test your rheumatologist can run. It tests to make sure your body can ,” mount a response” to infections.

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Im sure the have checked all sorts, they did take a lot of blod. But nothing to meantion.

They dont really know what to do.

Last year i had tonsilitis and Got admited to hospital cos it was so bad the penicillin didn’t work.

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I’m sure they have checked it all. As I’m no doctor, I have no idea what to think now. I’m so sorry. We have a saying here...

“ if you keep doing what you are doing, you will keep getting what you are getting.”

Not terribly helpful I know... overly simplistic. But ...

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Im better than i have been and will be back to normal next week.

I just have to waite til doctors in Denmark are interested in educating themself.

Im just happy to hear others are in my opinion to, that aps can cause other things and not just blod clots.

Thank you any way...

have a lovely weekend 😃

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I know for myself before I made sure that I regularly checked by B12, D, Ferritin, Folate and Thyroid, (not just the TSH), but a big panel of tests, I was far worse, and also when I was still consuming gluten in my diet. I am not on Warfarin, so it is easier for me to add in supplements, (all checked by my various specialists and my nutritionist), I added in a probiotic, daily as well as not eating gluten and my gut did improve, however not a good idea to add anything to your regime without checking with your medical doctors. I do hope you feel better soon, there are many viruses around and maybe they are not helping. I think with conditions like we have on here, they can hit us quite hard at times. MaryF

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Thanks MaryF

I have tryed last summer doing glutenfre, i found it had no effect.

I do try to cover vitamins in food and get vitamintablets everyday to.

I am getting better and soon i will be back to normal again.

My own go check all my vitamins and they are fine.

I just get frustrated... off work being sick for 3 weeks can get any normal person mad. And then afterwords pretend it is normal for a younger person to get so severe infections.

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I understand your frustration and I hope you feel better really soon. Best wishes. MaryF

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Hi,

I suddenly realized you are from Denmark! I am from Sweden (Stockholm) and I wonder, as Yllek said also, if you have a Specialist who also knows APS and other autoimmun illnesses. Usually a Rheumatologist or a Hematologist. Very few Doctors know APS so we have to do a great job to find them.

It must be possible to find a Specialist who is knowledable of Antiphospholipidsyndrom in Denmark!

We do need such a Doctor!! Also that Specialist knows we have to be stable as to anticoagulation and also sometimes selftest and have a rather high therapeutic INR-range.

We actually have to fight to get those things.

I Suggest you read "Sticky Blood explained" by Kay Thackray. A good book for you and your relatives to understand what you are going through.

Antibiotic may raise or lower your INR quite a bit. I am sure you will feel better when you stop those tablets. When you are low in INR be careful not to eat too much greens. Otherwise, always try to eat the same amount of everything, especially greens containing K-vitamin that will lower your INR.

I suggest you also make notes of what you eat, drugs, excercise etc. That will make your life easier especiallly if you have an erratic INR.

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Hi Lure2

We have spoken before.

I Got the book and am getting others.

My specialist is... well not convinced that aps do anything but give blod cloths, so its very hard to argue... 🙄

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If you don’t mind me now saying here, I’m glad you two have figured out who each other are.

Kerstin, She is who I mentioned to you about a month ago. Lotte, I did privately check with Kerstin when you mentioned perhaps seeing a Dr in Germany. I am slightly concerned that unless you know of a very specific doctor, you will be no better off in Germany.

I would rather you see a doctor that knows this disease as you are presenting with it. I thought of Kerstin and her university in Stockholm right away, but was unsure if they would take a private patient coming in from Denmark.

Kerstin was doubtful, as they are very busy and can barely keep up with the patient load of the Swedish population in the area. This is why I did not Pursue it further. I was hoping your doctor(s) would find better solutions for you but now we see that you are not really improving, nor is the rheumatologist investigatating to the deeper level needed, nor perhaps allowing for a stable (?) or high enough INR. I’m not sure. Therefore it’s wise perhaps for a second opinion by a specialist of APS.

Kerstin can take the conversation from here, as it more appropriate at this point.

Lotte, if Stockholm cannot accommodated you , which is probably going to be the case, I would reccomend if at all possible to make an appointment at London bridge. ( London Lupus centre.

londonlupuscentre.com

I will guide you through the logistics beforehand. I think we can start a new post so others can give tips too. It’s not as expensive as you think.

About 250 pounds for an appointment- and get all bloods done in Denmark and they will not repeat them. Try to see hematologist again. Double check all other clotting disorders are ruled out. Even hyper homocysteine, check your cholesterol- even the genetic one. L (a)(p). Make sure a statin does not need to be added... London bridge will want to know the current cholesterol levels. The bloods are not covered. So get as much done in Denmark as possible just before you go. A current APS panel. Vitamin ( especially D-3) panel as low D can exacerbate clotting. London bridge is great about trying to save you money with labs.

Ryan air for the win !

I like to stay at southwark bridge Novotel.

Easy walk ( 10 - 15 min) to London bridge. ( st Olaf house.) the Borough street market is right there. By hotel. Makes it very nice and convenient. Hotel has a great restaurant. Decent price.

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Thank you Kelly

I have thought of going London myself.., i do need more Money before i can make this posible.

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Hi, You can not wait till the Doctor you have got now has educaded himself....... about APS. Too long wait I should say.

I think it must be someone in Denmark who knows autoimmun illnesses like SLE (Lupus) and APS. Specialists of SLE often know APS also very well. Try that way!

I can not see you must go to Sweden for a specialist when you live in Denmark. Investigate!! Perhaps you GP can help you or some big University Hospital.

If you very much would like me to ask my Rheumatologist who I see on Monday, you have to tell me that now! I have so many questions to her hope she will answer me.

I also want to tell you that they have never found a clot on me but i have had a lot of microembolies and microclots during many years until I was properly anticoagulated. It is very difficult to find those on a Scan.

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My specialist rheumatologist is professor in sle and know about aps.

On what grounds can i demand a new specialist?

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I did not know that that your Specialist was a Professor and knows both SLE and APS.

Well then your Specialist should know that we need a rather high number of INR and also be the correct Specialist to treat your illness.

I must have missed the issue here. What is the problem?

Why should you go to London or Sweden? Have a talk with hen and if you get no understanding come back to us or change Specialist. I do not understand. Stay in your own country.

So I suppose you do not want me to ask my Rheumatologist on Monday.

Is that correct?

The coagulation clinic can not decide about your INR. It must be a Specialist of APS in charge of your anticoagulation who decides about your INR. It must be possible to talk to hen.

Try to selftest and test parallell in the vein at a lab to find out if there is a difference between the two readings (finger - vein). You mention an INR of 3.5 that is not too bad.

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Im not able to travel at the minute. So dont ask any of your gps for anything.

My problem is they only think aps give blod cloths nothing Else. My symptoms is all “ in my head”.

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❤️

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I empathise with your situation. I also suffered from a series of infections ( still do to some extent) the picture was somewhat muddied by the fact that I also have SLE and have had a PE in my left lung...both of which was put forward as a possible cause, especially for recurrent chest infections. After writing to my rheumatologist explaining the negative impact of the infections on my life in general, not to mention the erratic effect the antibiotics were having on my INR, he referred me to a chest specialist .

Low and behold...further investigation revealed an IgM deficiency.... what I am trying to say although in my experience APS can cause a variety of symptoms (in my case migraines being a case in point) it is important to also rule out other possible causes. You mentioned tonsillitis, perhaps a referral to an ENT specialist would be helpful for example......

Unfortunately, as others have mentioned....it is a bit of a battle.

All best wishes...Julie

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Thank you Julie for sharing.

I had PE in both sides in 2014, infection in my lunges and water. I was very sick.

Since then i had many infections and i fell they get out of hand now with aps.

I will think of your answeres and try find the one that can work best in my situation 😊🙏

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Hi again,

I see from your question 3 years ago that Mary wrote to you; University hospital of Copenhagen, Department of Hematology, Aarhus University Hospital, Aarhus, Denmark.

Have you tried that link?

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This is not a substitute for finding a doctor experienced in treating APLS! But . . . after my visit to Cleveland Clinic's Functional Medicine and going on a personalized detox diet I was "woke" to the subtle changes varying foods can make on my day to day health and wellness. For example -- I love gluten free pizza. I also love falling asleep soon after I go to bed. (I don't like the tossing and turning, hoping I'll fall asleep soon.) And, spurred by that diet and some meticulous food logs I found that eating too many carbohydrates within a few hours of bedtime was directly related to difficulty falling asleep. Yes, I can have some dessert with dinner IF my dinner also includes a protein and lots of vegetables.

So, you might explore keeping a log and researching how your body reacts to varying categories of food. Medicine is only recently delving into the very complex hormone cascades which are triggered by varying foods. High histamine foods are often the source of high immune reactions. High carbohydrate intake triggers the "inflammatory responce" while fasting or restricting carbs and sugars for 12 hours or more triggers the "repair and replace responce." I now try to go at least 12 hours between dinner and breakfast and prefer to have a protein, fat and leafy vegetagble breakfast delaying sugary and carb meals to late morning or lunch. Since starting this protocol my energy level has risen, and, after losing an intial 10 pounds, my weight has remained very stable. And my energy and mental ability are both higher then they have been for a long time.

Not an easy solution, but maybe worth a try. -- ask your doctor before making many changes, but if you keep a log of foods, times and symptoms you may come to some helpful conclusions.

Good luck!

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Thank you GinaD

I am trying to find my spot in all this, also with food.

I have a girl on 8 and i have to make food she can eat to... not always an easy task.

I dont have a problem with not being able to sleep... maybe the other way around.

I have a fulltime job aswell..

so again not easy to find the right amount of “doing” so my girl and my job get a bit of me..

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If a dr or specialist said that to me I would have definitely went off the rails on them. How ignorant for a specialist to say APS only creates clots, when research has found so much more than that. You should definitely give them a teachable moment. I have dealt with lame duck drs since this illness has kicked in, so I know your frustration when they refuse to listen. Ask for another specialist, or be more assertive with the specialist you have now.

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Thank you 🙏

I do think its because Denmark is so small a country that they cant be bothered.

Eventhough others have made research for them.

This specialist was so arrogant that he offered me to print materiales for me to read.

I must find a way for them to listen 🤔

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I have printed out many pages to hand to my drs to help them learn. Dr hughes is such a valuable pioneer for APS.

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Hi there, so sorry you're having a really tough time, I think all of us can relate, having APS is a battle because so few doctors and specialists fully understand it.

Firstly I would like to say that APS doesn't just cause clots, it can cause a multitude of very debilitating and painful symptoms too.

As KellyinTexas has said, an INR that's too low, can also cause you to experience some pretty horrendous symptoms, mine are as follows :

-Acute hot burning pain in my abdomen/torso around my kidneys, lower abdomen, bladder etc.

-Acute stomach pains and a very upset or barely functioning digestive system.

-Migraine with auras and zigzag lights, blurred and double vision.

-Numbness and pins and needles in my hands, feet, limbs etc.

-Low grade temperature, which has during a bad flare up caused me to have a very high temperature.

-Zero energy, its like the life has been sapped from my body, I can barely stand up!

-I produce multiple SVTs, superficial vein clots in my legs and groins etc. (I have incompetent and varicose veins in my legs, which predispose me to produce clots)

-My overall pain increases. I also have Ehlers Danlos Syndrome, a connective tissue disorder, which amongst everything, causes me to have both chronic and acute joint and muscle pain and this is worse when my INR is below 4.

In all honesty, the list can be very very long and in many ways can be different for everyone however I have discovered through this wonderful Sticky Blood support group, that I am not alone in so many of the APS symptoms I experience.

If I can keep my INR above 4, then my APS symptoms are kept to a minimum. My INR only has to drop to 3.7 however and I start to become very unwell and in a shed load of pain. If my INR drops below 3 and into the 2s, then I will become acutely unwell and become bed bound.

How it has been explained to me, is that when our blood becomes too sticky, it can't get around our body very well. Our blood is literally struggling to get into our organs, brain, stomach, bowels, muscles, bones, nerves etc etc etc. This means that our body is literally struggling to function on so many levels. This also means that oxygen is not being sufficiently carried into our organs and all of the places I've just mentioned above.

To put this into context, every single CELL in our body, needs oxygen to function. Oxygen is carried around our body in the red blood cells within our blood. If our blood is too thick, then it cannot get into the smaller and micro blood vessels in our body, which is where oxygen transfer takes place.

If our blood becomes sticky enough to produce micro clots within the already sticky blood, then we're really in trouble because not only do the micro clots block and prevent oxygen transfer taking place, in any and all of the areas mentioned above, micro clots also cause us to experience the most acute pain!!!

I asked a very knowledgeable APS haematology nurse, why I had the most terrible migraine and was also experiencing the most excruciating pain in my abdomen and around my kidneys. She explained that just one single micro clot, at the tip of just one finger will be excruciatingly painful, so imagine the pain that can be produced, when you are experiencing micro clots around all your abdominal organs and your brain at the same time!!!

With regards to your infections, you may have just been very unlucky and picked up a number of infections. In the UK, there has been a number of very nasty viruses and infections going around.

Because APS is an autoimmune condition, effectively your own body is attacking itself, imagine then how debilitating it is, to then catch a virus or infection that your body also has to fight against.

You're then given antibiotics to help to fight your infection, which in turn interfere with the absorption of your anticoagulant meds. You can then find yourself having an APS flare up, on top of a nasty infection, like tonsillitis!!! 🤒

Years ago, my INR was raised to 3.5 - 4.5 after I think it was my third bout of pulmonary embolisms, when my INR was 2.6. My current haematologists lowered my INR to 3.5 - 4.0, due to their concerns about bleeding, I've never even had a nose bleed!

It was impossible to keep my INR within a 0.5 range and I was always dropping below 3.5 and often down below 3. As I explained above, I become symptomatic and produce clots if my INR is at 3.7 and so my life was utterly unbearable. I was either in excruciating pain with an INR of say 3.6 and when my INR dropped below 3, I had full on APS flare ups and become bed bound!!

In the end I told my haematologist that I intended to keep my INR above 4. I explained to him, that if I have an INR below 4, my life is not worth living. He was reluctant but said that he understood it was my choice to do this, as I have no quality of life when my INR is lower.

He told me that I was going against his advice of a range of 3.5-4.0 but that he had thoroughly warned me all about the risks of bleeding.

Ultimately, its my body and so he has accepted that this is my choice. I try to keep my INR at about 4.3 and find the best way to do this is to self test with my Coagucheck every other day and adjust my warfarin dose by 1/2 - 1mg either up or down, if my INR begins to drop, or creep too high.

I think it would be a good idea, to have a chat with whoever is monitoring your INR and ask them to let you have a trial period at a slightly higher INR level. Explain how debilitating your APS symptoms are and that you have relief of these symptoms when your INR is at about 4. It's you that has to live in your body and you deserve to have a better quality of life!

My apologies for the rather long response but it really upsets me to hear when someone is suffering badly with their APS and getting little or no support from their consultants or doctors.

Hang in there, you're not alone, Claire 😊👍

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Thank you Claire

The infections i had in january and february was skin infections normal penicillin couldn’t sort out.

And yes i can relate to many of your symptoms you describe.

My inr is slovely going up again and i have less pain in my body.

I have Got my inr up to 3,5 where my gp agree, its much better for me.

I will use all your stories and make a great move here in Denmark, i hope 🙏

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