Shortness of breath: Hi, Every now and... - Hughes Syndrome -...

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Shortness of breath

gazaeee profile image

Hi,

Every now and then I have periods where I feel like I'm not quite getting enough Oxygen. I haven't been able to work our any trends whenever it occurs but I wondered if anyone else has this and whether they figured it out.

This past week if had it happen quite a few times. I wondered if it's to do with me being less fit than ever before (I've pretty much been quite inactive since the start of the pandemic), the weather change, my INR or something else.

Pretty sure I can rule out anxiety. O2 levels on the Oximeter have been fine as well.

My target INR is 2-3 and I've been hovering between 2.6 and 2.8 this last couple of weeks.

I've read a few talk in here about micro clots and wonder if that could have those symptoms. Sometimes I'll be having a conversation but need to take a deep breath every 20 seconds or so. It is a weird feeling.

28 Replies
HollyHeski profile image
HollyHeskiAdministrator

Hi, it could relate to your fitness but then you will link it to exercise/movement.I really think a check up with your GP is called for? Any new symptom should always be investigated, if only to rule out serious things.

There could be lots of reasons especially with lungs and heart.

Let your docter take a look and also help with a sensible health plan with you?

I am on Apixaban, but the digging and oxygen levels were no different for the 5 years on Warfarin with unstable INR.

In general APS patients do tend to do better with higher INRs mine was 3.5 - 4.5. Some are higher but most are aiming for about 3-3.5 💋

gazaeee profile image
gazaeee in reply to WendyWoo50

Hi Wendy,

Who set the higher INR for you? Was it progressive with symptoms that they increased it or did they set it higher from the start?

WendyWoo50 profile image
WendyWoo50 in reply to gazaeee

It was gradually increased until I felt better. I found out that - When I was under 4 I had terrible, constant headaches. Under 3 I had clexane injections too.

Because I was so ill I could barely physically get out of bed.

My target was set and followed up by my haematologist. I had weekly INR tests at hospital because it was so erratic. 💋 x

gazaeee profile image
gazaeee in reply to WendyWoo50

Oh dear. Glad you are much better now :)

I’m the same now again I feel very short of breath I am also on blood thinners and my INR has been stable for a few months ie between 2-3

I cannot be certain but wonder if it could be a different brand of Levo that causes it

I’ve had this for the last 3 weeks. It’s like I can’t catch a full breath. It’s not related to exertion as it happens when I’m rested too.I’ve been to the doctors and all my obs where fine and my INR was 2.5 so she has wrote to my specialists to ask them to see me as soon as possible.

I feel better that my obs came back normal but I would prefer my specialist to do some checks to see if anything is going on.

I have APS and Lupus SLE and recently was told my mitral valve is thickened!? but when the cardiologist was consulted he just sent a letter saying we will do a check up again in 2 years.

Medications I take are warfarin, hydroxychloroquine and vitamin D and HRT patches and recently had 6 B12 injections.

Sorry that doesn’t help you just thought I’d let you know I am experiencing the same thing.

Do you intend to get a checkup to see what might be going on for you?

gazaeee profile image
gazaeee in reply to Bobbydoodle

Hiya. Like you I wish they'd run a bunch of tests beyond the basic. It is tough dealing with my GP surgery as they just don't understand APS and never ever make any connection to it. Because of the number of times I have been to them and number of times I've asked for specific tests, they've grown really cynical when dealing with me. It is really frustrating. Coag clinic are even worse..there response is if you're in range, you're fine.

I've not been mobile for the last year and a half because the pandemic, pains in my foot and general health so did wonder if that was the reason. But I also get these episodes when I'm at rest.

I do get stressed now and then but I just can't put it down to anxiety because it also happens when my mind is distracted with happy thoughs.

I wonder if microclotting could cause this, and if so, what tests would highlight it.

gazaeee profile image
gazaeee in reply to Bobbydoodle

Hiya Bobby. Hope you don't mind me asking but were the extra meds (hydroxychloroquine and vitamin D and HRT patches and recently had 6 B12 injections.) prescribed due to APS related issues?

I ask because when I read about nerve issues (which I've been having), Magnesium, Vit B2, 6 and 12 come up time and time again. Searching for tests on vitamin Bs only yielded results for 1 of them.

Bobbydoodle profile image
Bobbydoodle in reply to gazaeee

No the hydroxychloroquine was prescribed for lupus. HRT for hormones symptoms and the B12 was because I asked for another blood test as J felt worse than usual and it came back very low B12I’m on vitamin D as my lupus specialist said it might help so he prescribed it daily

Hi, I have just that and periodically have to take like a very deep breath - sigh, every now and then. My oxygen levels are usually between 89 and 95.If I’ve been racing around (lol) it can be 97. But as I said it’s usually lower than it should be.

Ive no idea what causes it - if anyone can shed light please let me know too.

Also, I am sure I get, what people say are, micro clots in my brain. The pain is acute although sort lived. My Haematologist said it’s more likely to be neuralgia- mmm I’m not convinced! 💋

Hi I have also been experiencing bouts of shortness of breath. At first I thought it was to do with all my health issues I was going through at the time. But now I am convinced it’s to do with the general atmosphere/pollen/pollution. I live in the UK was just wondering where everyone else was experiencing the same?

gazaeee profile image
gazaeee in reply to Jolevans

I've wondered about this too but I would like to know it isn't something serious in need of attention.

Jolevans profile image
Jolevans in reply to gazaeee

You need to get everything checked out first.I was recently diagnosed with breast cancer so my reaction was I had lung cancer aswell but I have had the all clear. I also have asthma that is now all stabilized and they can’t find anything else!

Did you get the Covid shot? I have heard it can cause micro clotting. I have read many research papers. Our bodies can be such a puzzle. I hope you find answers

gazaeee profile image
gazaeee in reply to 25pooky

Hiya.

No not had the shot Thought funnily enough, I do wonder if a mild infection February 2020 was the trigger for all of y subsequent symptoms. I think they're saying now that Long Covid can develop even in those that had mild symptoms.

25pooky profile image
25pooky in reply to gazaeee

Frontline doctors help with long Covid. I know ivermectin helps. Prayers to you

gazaeee profile image
gazaeee in reply to 25pooky

Oh yes I've seen that

I am just having a bout of shortness of breath, my GP thinks I could be anaemic. I have a blood test tomorrow but within the last 3 days the inside of my eyelids has turned from white to red and my breathing has improved greatly. Could you be having anaemic bouts every now and then as my GP says anaemia can cause this.

Take care, all the best.

gazaeee profile image
gazaeee in reply to justlymostly

Hiya. best of luck with the blood test tomorrow :)

I don't know but I'm pretty sure that I've had stuff to check for that. Is it to do with having low Iron?

MaryF profile image
MaryFAdministrator

Your GP must always be informed of new symptoms, especially with this disease as we can develop micro clots. Low levels of B12 and also poor Thyroid function can also cause breathlessness and those factors can be missed, so worth going for a full appraisal. MaryF

gazaeee profile image
gazaeee in reply to MaryF

Thanks Mary. Do you know how they test for or confirm micro clots?

Blood pressure is ok as is the oximeter O2 reading. Ive had ECG's in the past which they said were fine also. I took your advice about a year ago and paid for some bloods for my thyroid and they were okay too.

I'll look into paying for some some bloods to be done again on my Magnesium and vitamin Bs although it seems not all vitamin Bs can be checked by bloods..unless I'm just not looking in the right places

Yes. I've had two negative Covid tests and my oxygen levels are fine. He says it is not related to my heart murmer and atrial fibrillation. Next step chest xray if I am not anaemic.

gazaeee profile image
gazaeee in reply to justlymostly

Glad its not those things. Hope they get to the bottom of it and it's something that resolves or can be treated safely :)

I too get where I feel oxygen deprived and can’t take a full satisfying deep breath, and other days perfectly fine. I’ve been told it’s most likely micro clots but apparently they are not life threatening! I’ve had this for years, and I’m still here.

gazaeee profile image
gazaeee in reply to hihannula

That sounds plausible but have you then found it correlates with your INR being on the lower side? I ask because I haven't been able to affirm that myself. Is there a way they can actually check if it is micro-clots?

I also get sporadic moments where I feel my heart rate is a little high without good reason.

Something else, get up alot at night to use the toilet and read somewhere that could be do do with poor circulation where you retain water in your lower limbs only for it to travel back up when you lay down to bed...hence why?

Poor circulation and clots can be related.

Wish I had access to a wise Dr that actually wants to figure it all out for me

Hi Gazaeee,

We need a rather high INR to be without microclots and other symptoms typical for APS. I have had very high bloodpressure before and a lot of neurological symptoms like TIAs and microembolies. After an INR of 4.0 (I selftest so I can have control myself over my anticoagulation) I feel rather ok. They found rather early Pulmonal hypertension and now also leaking heartvalves (in rare cases usual for APS).

It is necessary to have a Specialist who understands that we have too thick blood and who works with autoimmun illnesses and knows that they often also go hand in hand and especially APS is known for its very sticky blood. So you have to look for such a Doctor which can be a fight and a problem as they are so few of them. Still we have to take that fight for our own safety.

The microclots may be very difficult to find on a normal Scan. A Petscan and an Ecocardiography of lung and heart may give some answer.

Good Luck to find a Doctor who is knowledable. So very important. Believe me.

Yes, I find when my INR is around1.5-2.6 my breathing is laboured, can't catch a breath, my chest aches, can't take deep breath, usually off balance and dizzy, eye disturbances, flashing lights etc...as well as my mood changes, (which I'm sure is from being uncomfortable). The closer O get to 3.5 I feel awesome. Higher than that, I get excruciating headaches, can't think, rapid heart rate etc...

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