Sticky Blood-Hughes Syndrome Support
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Cardiac X Syndrome

I'm wondering if I have this. It's mentioned in the book Sticky Blood as it can be a part of APS for some and it's mentioned on The British Heart Foindation Website.

Has anyone heard of it?

Has anyone been diagnosed with it? 💋

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I was found to have it whilst I was in Hospital after my Stroke. I started having chest pain and felt flutters in my chest. I thought I had better tell somebody so they did an ECG and all hell broke lose! I ended up being transferred to another hospital so they could do an immediate angiogram- expecting to have to do shunts, but when they took the pictures they said they could drive a bus through all my arteries and veins! No reason for the pain or ECG results. I was told I had Syndrome x.

A few months later I had another attack, and my GP called an ambulance thinking I was having a MI! Again everything turned out to be normal. Since being on LMWH these attacks are few and far between.

I would advise that any chest pain is checked out, no matter if you have been diagnosed with this condition - things change and you must never assume that its nothing.

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Thank u I'm in hospital now. Xx

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Hi, I had an episode 4 years ago, where all my symptoms related to a heart attack, sudden extreme pain from the chest, up through my jaw, radiating down my left arm. Shortness of breath, and pretty scared, lasted about an hour, as ex ambulance technician I knew I needed to go in to A & E. For 5-6 days I was in pain that just felt like severe bruising. Every test was done, checking heart attack, blood clots to heart and lungs etc. Nothing was found wrong!! I felt such a fraud!.

This was followed up at St Thomas's, who finally say I was ok, the doctor did mention cardiac X syndrome, but I didn't take it in.

This happened two years later again and again nothing wrong.

Then last September I had another episode, which caused numbness in both arms for half hour, only an extra dose of clexane sorted me out.

I had the opportunity to discuss this with Prof Hughes, and he confirmed it was most likely, without examining me, experiencing lack of oxygen, thick sticky blood to the heart - cardiac syndrome x.

As ApsNotFab says, any new or more severe, or longer episodes of chest pain should be investigated.

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This is exactly what has happened to me. X

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Hi again,

As to heartsymptoms as well as other symptoms of our illness I can recommend prof Graham Hughes book "Hughes Syndrome: Highways and Byways". Personally I think it is his best book as practically all (at least severe) symptoms are in it.

Chapter 3; Heart is about "syndrome X" (now QUOTING from his book;) - " a cardiac condition characterised by the presence of angina, but with normal-looking coronaries viewed on angiography. One of these patients, Kay Thackray, went on to write an outstanding book on the history of her illness ("Sticky Blood Explained"). One of the notable features of these patients was the improvement in angina seen with Heparin or Warfarin treatment". (unquote)

You can also read about "Pulmonary Hypertension" and "Heart Valve Lesions" among other things in prof Hughes book.

I guess some of you already have bought "Sticky Blood Explained" as I always talk about it.

Kerstin

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Once again thank u everyone.

This is what I'm getting- everything's normal! bloods normal. Chest x ray normal. ECG normal (except the QT which I expect as I have long QT Syndrome. ) cardiac CT calcium score O. Cardiac MRI relitavy normal. Angiogram not carried out as I have sensitivity to contrast dye.

Pulse between 35 & 52 😮

BP normal. Temperature normal.

Pain in central chest. throat. Shoulder. Right arm. Into back. Lasted 2 hours after tidying house (light work) then And now feel bruised and heavy in chest. On top of other meds taking morphine now.

Just want a diagnosis. 💋

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I was hospitalized two weeks ago with something very similar. My EKG did show abnormal while the pain was occurring and O2 sats were low. ( they wanted to air lift me by helicopter to San Antonio but I refused. eKG strip was abnormal and did show possible infarct. Our towns hospital does not have a dedicated cardiac unit.)

My brother in law ( GP from Austin) happened to be in town and looked at eKG strip and insisted taking me to Austin and admitting me. All tests were ok. I asked about this cardiac x syndrome. No one had heard of it. My brother in law said it was Prinzmetals .

My INR had been sub therapeutic for a few days.

It lasted about 35 min. I had been in a pretty rotten migraine that morning - and at onset of chest pain. It went solid through front to back. Center of chest . Up my neck- down one arm- slightly nauseous. Numb lips and face- very pale.

And yes- I was very sore for two or three days after. I felt internally very badly bruised.

When it was over- it was over- just like someone had turned on a light switch- then turned it off again. It was truly gripping pain.

Shocking experience.

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Sounds awful kèlly. Did u have a diagnosis?

I hope ur well now 💋

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I am perfectly well 😊hoping you are also. I’m grateful so many wise women are answering our questions. I have many. I did not have a diagnosis per se. All tests ( chemical stress test ) and x ray to make sure no obvious clot in lungs or heart ( PE ) were done.

No occlusion sin veins or arteries. Cardiac enzymes remained stable- no elevations.

No changes to ECG / EKG. Not sure about that as we did not have a prior one to go by. I’ve never been told I have an abnormal ECG.

I never saw an actual cardiologist at hospital at all. Only “ hospitalists.”

I felt that anything major would have been identified.

My brother in law said he believes it’s Prinzmetals angina.

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What INR did you have when this happened?

Kerstin

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Kerstin, by vein value alone in Austin Texas ( Saint David’s Central) it was 3.5.

The problem is I had been sub therapeutic for several days in a few. This will cause me a lot of trouble. I can dip for one day, but a few days in a row is really bad for me.

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Hi WendyWoo, in 1996 was diagnosed with Prinzmetals Angina (unstable chest pain that comes on at rest).

In 2015 I developed extreme exercise intolerance-difficulty climbing one set of stairs or walking half a block. A cardiac cath showed severe cardiomyopathy and heart failure. However, no major arteries blocked. It was microischemic blockages in teeny blood vessels in heart-Syndrome X. Currently treated with pacemaker and lots of cardiac medications.

Good luck !!

Nancy in West Virginia

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Get better soon. Think I'm having a pacemaker next week x

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Have you been investigated for POTS?

( if I am asking this elementary question, you surely have been.)

I have tested positive for pots via tilt table testing. It’s early/ mild and I really suffer no ill effects from it. The neurologist just wants to make sure I do not become de -conditioned. I have a little extra salt in diet.

My heart beat is fine. My blood pressure ( lower - bottom number is usually a little low. In high 50’s to lower 60’s. ) to top number is ok- low end of normal .

I’m 48 years old- almost 49... March 8 will be 49, I’m 5 feet 3 inches tall, and weigh about 111 -112 pounds. So my blood pressure should be a little low because I’m smaller .

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Hi Wendy, I got my first pacemaker in 2009. It was a standard pacemaker.

In 2015 I went into heart failure with an ejection fraction in low 20’s. I was given loads of heart meds but still had problems, especially with very rapid heart rate (120) and a very long delay between each ventricle beating. Ventricles are supposed to beat simultaneously so that a maximum amount of blood is pumped with each beat.

In addition, I needed a defibrillator, because I was at high risk of my heart stopping. So I received a defibrillator - synchronizing pacemaker. It has an extra wire-one to each ventricle-so that they beat at same time.

This pacemaker has helped tremendously. After six months my ejection fraction went up to 47%. Normal is 65-75%. I am still improving. I can walk 6 blocks now. I don’t break out in sweat and nearly collapse after 20 feet.

Good luck with your pacemaker!

Nancy in West Virginia.

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Bless u u really have been through it. At least ur quality of life is improving now. Take care. And enjoy every day, best u can xx

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Hi I just wondered how u r with ur pacemaker? I finally have a date for mine 8 June. I'm hoping not only will it regulate my pulse and raise it but I hope these chest pains that no one can diagnose will stop!

I've just re read these posts and wondered if ur pacemaker has helped ur pains too. 💋 Love Wendy x

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Kay who wrote the Sticky Blood books is a friend of mine. We were brought together as we were both separately diagnosed with Cardiac Syndrome X at the same time. She was a patient of Prof Hughes and I was a patient of Prof Khamashta and we were the first cases of CSX they had ever seen. It’s an odd thing in the way it acts and in the way that halfof cases it doesn’t get better with GTN. You can also get it at rest for absolutely no reason. I’ve been taking diltiazem for about 15 years and mostly it’s under good control. However sometimes it gets me and last Sunday I had to go to A&E for a few hours and then again on Monday.

Please feel free to ask questions or message me if you can do that from here. I haven’t gone through all the replies as I’m still not quite right and my head is fuzzy so you may already have enough info.

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Thank u do much that's very kind of u. The cardiologist on the ward knows about it but doesn't think I have it?

Did it show on ECGs? What texts did it show on? X

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No, it doesn’t show on ECG. It also doesn’t show on an angiogram although it was normal procedure to have one to rule other things out. I was diagnosed in 2001 so please be aware that some things might have changed although I don’t think so.

It’s another illness where not a lot is known, in fact less doctors seem to know about CSX than about APS!

The one test that did show a problem was a stress test, I think it was called a thallium scan. This showed an area of slow blood flow through my heart. Then it’s a question of ruling out other things and looking at symptoms.

When I was first dx they thought CSX was caused by coronary artery spasm then they thought it might be due to damage in the very small blood vessels and lately I read that it could be either. But it’s the very very small blood vessels which are affected. Sometimes I think it is now called micro vascular angina. In either case there is a potential for an increased risk of a clot because we have APS.

There are other heart problems that can happen with APS like valves i think . Also we can get chest pain for other reasons.

There are a couple of specialists in CSX now. The one whose name I remember is Peter Collins in the Royal Brompton.

Hope this helps x

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Do you mind , Wendy, if I jump in here and ask a few questions? When I was discharged from the hospital ( Feb. 11th) I was instructed to follow up with my regular GP with a few days time. I only just made an appointment for March 8th because I really have been well, and I needed more info on this for him.

So my questions:

1. Is angina syndrome x the same thing as Prinzmetals angina?

2. Our 16 year old son also has APS. He has a stellar Rheumatologist. He noted that I have extremely pronounced Raynauds syndrome, and mentioned that it can affect the heart. ( I was quite surprised!) Raynauds is of course “ Vaso spasm” in nature. I believe , according to my Hematologist, this can lead to clotting. (?) at least I know it does in larger veins. I’m dealing with this in my Brachial in arm. Phlebitis= leads to actual large clots.

So...after my ,” episode” two weeks ago with no help from doctors other than my brother in law- because we are family and he’s “up to speed” on my APS, he determined it must be Prinzmetals angina spasm. - I did the Wikipedia thing. I googled Prinzmetals angina. Low and behold-it mentioned Raynauds. ( Remember- my sons Rheumatologist mentioned APS Raynauds could happen in heart...)

So... my question... is Cardiac syndrome X, Prinzmetals Angina, and Raynauds ALL the same thing? Just a severe Vado spasm of the heart which can lead to clotting ( thus at a certain point then tips-no linger “ phlebitis “ and can then actually be classified as microangioplastic micro clotting which can then be detected with more specialized cardiac testing? )

Did you follow that ? I’m applying the mechanisms of action of clotting and spasms on other parts of body to cardiac vessels. And throwing in a helping of Raynauds...

Wendy... what’s your Raynauds status elsewhere?

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No, cardiac syndrome x is not the same as Prinzmetals although they are very similar. One of my GPs thought they were the same when I was first dx but we checked and they aren’t. Kay has now had her CSX changed to Prinzmetals (you jogged my memory!) because it was decided that it was definitely spasms and they were thinking that CSX was more damage to the vessels than spasms but she was then put onto the same medication as me. I saw a cardiologist to see what he thought about my case but he said they were not totally sure what CSX was and it didn’t really matter as my medication was doing the right job.

Raynauds is completely different to both as far as I know. I don’t have Raynauds. I’ve never heard of it being a heart problem too so I’m interested in what you say. I know Raynauds can be treated with similar medication because the meds open up the blood vessels which can be needed in both conditions. But that’s the limit of my knowledge about Raynauds.

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Thank you so much for taking the time to respond. I had read I Highways and Byways a quick passage about CSX but had not focused on it as it was not one of my APS issues.

I’m trying to gather information for my follow through appointments with GP and vascular surgeon this week. I don’t really know what to tell them happened to me.

I have had a few ,”pains” in the center of my chest when my INR has been low, but they have been transient. I’ve made mention to my doctors but with a stethoscope exam all seems fine, and with various surgeries all ecg strips have been fine. We have all just assumed it’s the quirky nature of APS. I have chalked it up to sludge blood, or perhaps antibodies “attacking” vessel walls in that area.

I guess ,” sludge blood “ is now the same as micro clotting, is the same as micro vascular clotting?

Has it been explained how pain that intense / spasm / caused by micro clotting could not cause cardiac enzymes to rise? Mine were totally ok. This tells me I must not be in any real danger at all. It’s just counter intuitive to have you body suddenly be in that kind of pain for about 35 minuets non stop and think it’s not somehow dangerous- especially when the INR is concurrently low.

I asked the doctor about CSX and he had never heard of it. He had no interest, and did not look into it at all. I was only given a chemical stress test to check for blockage, past and present. I was also wisely checked with X Ray for lung/ heart blood clots given the APS diagnosis.

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Oh no Kel never assume that because your blood test was normal that you’re not at risk.

You already know this has happened to me numerous times as well. Prof Hughes said it was CSX, haematologist said spasms and my cardiologist said sludge blood.

However it was my cardiologist who gave me the tap analogy (remember that?) and said it puts me at real risk of having a heart attack.

Always get checked out x

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Kelly, I remember you have had this but I don’t remember the specifics. Probably because each doctor had a little different ,”take” on it.

I do not remember the “ tap” analogy. Can you explain it again? Especially coming from your cardiologist- this would be useful for my GP. ( I see him next week).

I do remember you turned a nice shade of blue. The only odd finding I had was my oxygen saturation by finger gadget was 92%. I’m usually 99%. Then it improved. This was with the ambulance team in my living room- with my GP brother in law there. I sent him to the kitchen to make coffee- and lunch... ( they wanted to place me in a helicopter...) The whole affair was seeming silly to me by then because I was resolved of pain.

( I got a call this morning from my vascular surgeons office. Dr . Vinas- I was due to see him tomorrow, but the poor fellow has come down with the flu. I’ve been rescheduled. )

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The cardiologist told me that my heart was like a tap with the tap being the structure (heart) and the water was the blood passing through.

There’s nothing wrong with the tap. It’s a perfect tap and does what it’s meant to do. However if the water flowing through that tap begins to freeze it slows everything down and causes the tap not to work correctly. It splutters and protests!

Once the water flows freely again the tap will continue to work perfectly - leaving little to no evidence behind as there was nothing wrong with the tap in the first place!

This is my explanation for my chest pain when my inr lowers.

Call it what you may - spasms, micro clots, sludge - I’ll call it my frozen pipes! X

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Oh yes... I completely remember now! We even “ chatted “ about this!

I just needed a memory jog.

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Ok... but ‘ splain me this... you said the cardiologist said this put you in danger of a heart attack. From a clot? Reduced oxygen? How?

We had the exact same after effects- feeling like we had been “ kicked in the middle of the chest by a horse.”

I remember thinking it was like my heart had been worked out and sore just the way legs are when water or snow skiing- and worse on second and third day after event.

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I assume it’s because we can get clots that affect our heart as well as any other organ - that’s why we’re at risk.

Nobody has the exact science or answer. Believe me I want the exact answer, I want to understand the mechanism behind it all - but nobody can answer - it’s all professional opinions and each Dr has a different slant on things.

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American doctors don’t like that one bit. Insurance coding? Which box to tic ? Professional liability? It’s terrible here for them. Not sure.

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And that, my friend, is why it’s so important to find Doctors who understand the condition. Unfortunately that’s much easier said than done.

And just to add that I’ve spoken to Kay quite a few times (who wrote the book Sticky Blood explained). She also has this type of pain and was given a GTN spray - however she also had a heart attack as well. This pain should never be underestimated x

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Yllek (Kelly),

Have they done an Echocardiography with doppler to look at heart/lungs issues like the valves and pulmonary hypertension?

I am not medical trained but this is one of the rare typical findings from our illness APS. I have both Mitral- and Tricuspid issues from backflow. I get pain when I am not correctly thinned around 4.0.

Kerstin

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Hi Kerstin

Yes I’ve had two echos and they both said different things (valve issue on one and systolic dysfunction on another). I was then sent for an mri and no issues were found!

Interestingly I had my echoes done when my inr was low and the mri when I was at 4.

It’s hard when there’s no concrete supporting evidence but at least all my Drs now believe me and attribute it to APS.

Hope you’re doing ok.

Kelly

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Wow such a lot to read. It's such a fight to gain understanding. I'm still in hospital awaiting a treatment plan. Thank u all for ur answers xx

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You are still in the hospital? What did they diagnose you with officially? Did your cardiac enzymes elevate? ( mine did not.) did they “ see evidence of any changes of any kind or narrowing of the vessels anywhere “?

1. Arterial sclerosis?

2. Plaque build up?

3. Previous damage of any kind?

4. ( micro clots?)... not detected I know.

4. I see my doctor this Thursday. My GP. I’m going to try to explain what I’m learning.

5. What tests were done?

6. ( they never brought in a cardiologist on my case because my cardiac enzymes did not elevate.)

7. I had a chemical stress test, and scan for clot (s) in Lungs/ heart

8. Detailed blood work

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I like you am wondering the same and intend to ask about Syndrome X when I go to London to see my consultant next month.

I suffered chest pain whilst being anticoagulated with warfarin and heparin. unfortunately the local hospital I were admitted to had little knowledge of Hughes ! I have had further tests done since which has shown a couple of slightly leaky valves.

I do hope you make a speedy recovery and get some answer's soon. x

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