Just a quick question :)

[Anyac81]

Hi can Hughes syndrome cause breathlessness? I don't mean when it causes a pe, can the condition alone cause it as a symptom?

Many Thanks x

[MaryF Administrator]

Hi, you need to speak with your GP to get to the bottom of this, as it could be for any number of reasons, from an infection, pneumonia, COPD, even a slower heart rate can cause, this, another cause can be low thyroid function. Whatever it is, please see your doctor as soon as possible. MaryF

[Tucson in reply to MaryF]

It causes breathlessness for me and I've been intensely investigated and no cause found. I sometimes can't finish a sentence due to lack of breath yet my heart and lungs are in tip top condition.

[Anyac81 in reply to Tucson]

Hi this is the exact problem I'm having, had chest x rays, the works and it's all clear, I can't even shuffle around the supermarket at the moment it's so bad, I have positive d-dimer but that's it my Gp seems to be getting pretty fed up with me now, checked food allergies, asthma and the usual suspects, I asked her to check my blood for the three antibodies but she said no! I see my Rheumatologist middle of May for my fibro and lupus, so I will ask him to help I guess Ac x

[Lure2 in reply to Anyac81]

Hi,

First of all I would like to say that it could be a lot of different reasons to have breathlessness.

So you have a Rheumatologist. I guess you have it because you have got Lupus (not Lupus Anticoagulant I hope) and Fibro.

I really hope he/she knows well about Autoimmun illnesses like HS/APS, Lupus, Sjögrens, Thyroidea. If the Rheumatologist knows autoimmun illnesses he will certainly let you take the three antibodies.

You say you have a positive D-dimer. The GP does not understand that we have too thick blood and some of us have micro-clots and emboli (like me) but please investigate (as you do just now) this carefully. I wonder if you have got high bloodpressure?

You could actually try baby-Aspirin (75-100 mg is enough) and see if you feel better. Aspirin will not interfere with the three bloodtersts for HS they will take. Only anticoagulation with Warfarin interfere with one of the antibodies tested and that is the Lupus Anticoagulation-test. If you will try it take it with food (better for the stomach).

Good Luck and please tell us how it goes for you.

Kerstin in Stockholm

[MaryF Administrator in reply to Anyac81]

So called 'Fibro' needs further checking, have your vitamin D, B12 and iron checked and beware that your TSH is the only test that the medical profession will have done, there is no way around this, even if you ask, or the doctors ask the labs are not set up, to give you an idea of the tests I do to check my thyroid, which did not show up for years in the TSH, but did straight away with these, which I pay for privately: I was not prepared to settle for a diagnosis of Fibro, I also joined Thyroid UK.

TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies,Thyroglobulin Antibodies, Ferritin ,Folate, Vitamin B12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25 OH), REVERSE T3, Insulin, HbA1c, Magnesium.

Also the fact that you have a postive D Dimer result is worrying, who are you under for Hughes Syndrome/APS. do you have a specialist, as you need to be referred to one off our recommended list rather than just a rheumatologist, specialists are on the right of the forum under Pinned Posts.

MaryF

[Anyac81 in reply to MaryF]

Just found one for CRP, is 7.1 , very confused about this one, she said it's ok, but I've heard over 3 isn't very good for you?

All very confusing when my doctor is not forthcoming lol x

[Hughes-Comrade in reply to MaryF]

In my case Mary I've had a high D-Dimer result every month for going on five years now. It is between 5-6 times higher than the normal high. At this point the doctor does not get to concerned as that's my normal I guess. I think that number can also represent inflammation as well... I think.

[MaryF Administrator in reply to Hughes-Comrade]

Yes I have heard of this with other people! Hidden and Manofmendip do you have a more detailed opinion? MaryF

[Hughes-Comrade in reply to MaryF]

I found this:

"If the d-Dimer test result is above normal, that does not mean that you have a blood clot because other factors (such as infection, inflammation, pregnancy, etc.) can increase the d-Dimer. A d-Dimer test result above normal means that further testing may be needed to see if there is a clot. In other words, a normal d-Dimer can virtually rule out a new blood clot, but an elevated d-Dimer will not confirm that a clot is there."

clotcare.com/faq_ddimertest...

[MaryF Administrator in reply to Hughes-Comrade]

Yes, the whole picture has to be looked at, countless people have reported this. MaryF

[Lure2 in reply to Hughes-Comrade]

Hi Hughes-Comrade,

I can tell you that as far as I know, the hospital or Doctors I have had for 15 years, have never taken a D-dimer on me. I usually ask for copies for papers but when it has to do with A & E (even if it is your own hospital), you do not alwas get copies out.

My Specialists and the Hospital have never seen any clots on me either. I have micro-emboli. Still my Doctors believe me. I have now Pulmonell Hypertension and tricuspidalisinsufficiens and diastolic dysfunction in some way (?).

I am triple positive with persistingly high titres all the time.

I will read your paper about D-dimer. Thank you.

Kerstin

[Wittycjt in reply to Anyac81]

Did they explain why "No"?

[Anyac81 in reply to Wittycjt]

She said my x ray was clear so obviously nothing to worry about.. and maybe it's just a lupus 'thing' and to wait to speak to my Rheumatologist on the 16th .. I've not been able to breath properly getting on for 12 weeks now, hopefully the Rheumatologist will agree to do the AS blood test x

[Wittycjt in reply to Anyac81]

Are you able to phone your rheumatologist to ask about getting the blood work done before your next appt? Many times they can phone the request in?

[Anyac81 in reply to Wittycjt]

I've recently moved counties, it's a new guy, we've not met yet, however he will have the notes by now from my previous Rheumatologist so definitely worth asking x

[MaryF Administrator in reply to Tucson]

I was very breathless and air hungry until my thyroid was treated, then it improved. MaryF

[Anyac81 in reply to MaryF]

They did do TSH, it was 1.5miu/L that was the only one looked at though x

[Hughes-Comrade in reply to MaryF]

I used to tell doctor I was short of breath. But found a better description one day; "air hunger".

[MaryF Administrator in reply to Hughes-Comrade]

This is something well documented and described on TUK's list of symptoms, patients with hypo thryoidism, either on medication not suiting them or with lack of diagnosis experiencing this symptom. MaryF

[Hughes-Comrade in reply to MaryF]

In my case I think the air hunger was two-fold. In the early 90"s I took tae-kwon-do classes. No matter how much I worked out I couldn't seem to "get in shape" and build up an "air tolerance". When we sparred I would have to stop a few times and catch my breath.

In 2012-13, because of you and your "constant insistence" of advising members to check the thyroid I reviewed the UK Thyroid site and determined I was Hypo. Of course my provider ran the tests and said I was fine. Our ND started me on armour. However, once I started fragmin (first) and then thyroid meds (second) I was no longer hungry for air on a daily basis.

The biggest issue with thyroid it felt like someone had their hands squeezing around my throat. Meds took care of that.

[MaryF Administrator in reply to Hughes-Comrade]

Thank goodness, for years my TSH was normal but I had every symptom, when testing privately with a Thyroid Plus 15 type thing it all showed up, yawn etc, if only the testing was more thorough etc. Thanks for feedback really useful. MaryFx

[Lure2 in reply to Tucson]

Hi Tucson,

Have you had or do you have high bloodpressure? Have they done an Echocardiography with doppler on your heart/lung?

Kerstin in Stockholm

[Tucson in reply to Lure2]

Hi Kerstin

Yes I've had several echo's and they are always excellent, My BP is in the normal range. I've had 24 hour heart monitors and BP monitors always normal. I wish they'd stop checking my heart and find the real issue but they don't. I've had chest xrays and ct's and nothing found, as APsnotfab says it's clearly not normal and should be properly investigated but I won't hold my breath.

[WendyWoo50 in reply to Tucson]

I'm the same!

[Yllek]

Hi

I get breathless episodes when my inr dips only. Last week I had sudden onset of breathlessness along with a sudden appearance of livedo on my palms - it lasted 10 mins and was horrible. To me there's no doubt it's related to APS / Hughes but the tests came back normal.

I'm still out of range but injecting fragmin and it's not happened again. I've been told I have micro clots so I assume this is what it is in me. It won't be the same cause for everybody though as breathlessness can be caused by numerous problems both related and unrelated to our condition.

I hope you get it resolved soon.

Kelly x

[Anyac81]

Generally speaking I'm usually hats off the the NHS, BUT since I've been so unwell, (12 weeks now) I keep hitting a brick wall I had one blood test showing d-dimer low vit D and high liver enzymes, one chest X-ray and one vq scan, because they couldn't 'see' anything I've been dropped like a hot potato, it's like they can't find anything once and that's enough for them to tell me to go away basically... I'm starting to think I may have to look into some private tests, I'm just not sure about the cost, or maybe it might be worth seeing a different Gp, I can see any Gp at my surgery, maybe second time lucky? x

[Wittycjt]

Anyac81, I see on another post you have been diagnosed with a hernia also. If it is a hiatal hernia this also could be causing the SOB= shortness of breath.

[Anyac81 in reply to Wittycjt]

I was really hoping it was that, easy fix! Lol, the radiographer said it's no where big enough, it the first question I asked

[Wittycjt in reply to Anyac81]

Is the sob the only reason you are thinking it may be Hughes? Or other symptoms ?

[Anyac81 in reply to Wittycjt]

No, miscarriages unfortunately, severe pre eclampsia in last pregnancy, d-dimer, and they have to process my bloods very quickly or they congeal in the tubes before they even get to it, there have been some mentions of it, but was never tested for some reason

[Wittycjt in reply to Anyac81]

Sorry to hear that. Are you currently pregnant?

[Anyac81 in reply to Wittycjt]

Thank you, no I was blessed with 4 children eventually, no more for me now

[Mair]

This is so exciting to me to hear of others having breathlessness with APS. Not that I mean I'm glad anyone has any bad symptoms!

Severe shortness of breath first started with Graves disease 12 years ago, improved after treatment but recurs sporadically since then. Once I went to emergency and was diagnosed with anxiety, which I'm still quite angry about, but have given up and just live with it. I have no PE history, only stroke and TIAs.

My rheumy doesn't consider micro clots to be a significant problem or even diagnosable since they aren't visible on CT. Pulmonary decided I might have mild asthma so gave me an inhaler which does give slight relief.

I haven't been able to correlate my breathlessness or any other symptoms to my INRs, either high or low. My primary doc has lowered my INR range from 3-4 down to 2-3, which makes me a bit nervous. Last echo was about 6 years ago and the aortic and mitral valve dysfunction was noted as "minor." Angiogram ruled out pulmonary hypertension.

So it looks like the conclusion is that I'm imagining that I'm breathless. The term "air hunger" describes it perfectly.