Hi,
Does anybody know if it's ok (or even beneficial) for a Hughes Syndrome sufferer to take powdered Lecithin/supplements? Lecithin is supposedly an aid to help build cell membrane/phospholipids.
Many thanks
Lecithin and APLS: Hi, Does anybody... - Hughes Syndrome A...
Lecithin and APLS
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Clotia
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MaryFAdministrator
I notice you have just joined? Can you confirm if you have Hughes Syndrome/APS? and your location please. It is more than likely to cause a problem with Warfarin. MaryF
Hi,
Yes was diagnosed with Hughes Syndrome last April after a Pulminory Embolism but am not very good at posting yet.
I don't get many symptoms, I'm on Rivaroxabin for life now, and am just wanting to look after myself by trying to eat well (something I've ever been good at). I'm not sure if this is a progressive disease but I'm a single Mum and need to stay healthy for my 5 year old.
Many thanks,
Claudia
Thank you for replying, it is great to be as healthy as possible, for instance I keep a very close eye on my B12, D and iron and avoid gluten and eat no snacky rubbishy foods. However I would personally avoid soya of any sort as many of us end up with a slow thyroid and soya does not help the thyroid, this is my own opinion but it does crop up a lot in the right books. If trying anything new please do run it by your GP and or consultant.. MaryF
That's great information, thanks so much. I couldn't find the answer anywhere so this is good advice. I still eat sweets and crisps so will try to stop that.
Just one more thing; do you know if it's a progressive disease? Will things eventually get worse and do more symptoms usually appear later
on down the line?
Thank you again in advance.
Sorry, I live in Wiltshire UK
Thanks. MaryF
Hi.mary.does hughes syndrome can hv anti ds dna positiv borderline?does hughes syndrome can make low platelet too?thanks
Hi it is possible to have Hughes Syndrome and also to have Thromboyctopenia, hughes-syndrome.org/about-h...
MaryF
Is that mean not hav lupus or have?im pray is not lupus.because my daughter just has low platelet can cause nose bleeding.dont have any symptom like lupus.but the ds dna is borderline positive.ana test 1:640.anti sm negativ.anti LA and anti RO.positive.do you can tell me is it lupus or not
Mary, do you think that is the correct INR?
Every new or worse symptom I get I come on here and learn.
I must try and eat healthier and get exercise. I have rheumatoid arthritis in my knees but I will continue with the shots in lieu of that operation.
Your iNR must be set by the consultant and Hughes Syndrome patient normally need a higher level set. MaryF
I am Barb and have learned so much using this site. I have what is called as ACQUIRED APS. I almost died about 6 years ago when I couldn't breathe. The doctors said I had blood clots everywhere.
Now I have my own tester and am supposed to have an INR of 3.5.
I live in Florida.
I forgot to ask if you think I could be off warfarin for a week at a time. My Dr. Says not even a day.
I would not be off it for a week, no. follow the medical guidance so many are desperate for a decent INR to be set, sounds like your doctor has the right view on this. MaryF
My INR was set after almost dying from blood clots everywhere. Now I have the brusing in my legs and a scar tissue problem in my lung. They watch it. It is supposed to be 3.5 to 4 and my current family Dr. Insists on 2.5.
Barb
Thanks for the feedback. MaryF
Hi,
A couple of points about Lecithin.
1. It contains phosphatidyl serine (though in small amounts) as well as phosphatidyl choline (in larger amounts). Many APS patients have raised anti-phosphatidyl serine antibodies. This is routinely tested for at St Thomas's, I'm not sure about elsewhere. In practice, this means your body is producing an autoimmune response to phosphatidyl serine, and therefore putting more of it into your body will provoke a response.
By way of personal anecdote (and it's no more than an anecdote). Oily fish is supposed to be good for us. When I have Scottish mackerel I feel 'off'. Then I discovered Scottish mackerel is the highest food source of phosphatidyl serine. In contrast, wild salmon or sardines do not have this effect.
2. Phosphatidyl choline, the major ingredient of lecithin, is problematic. Yes, it's indicated for improvement in memory. However, there is conflicting evidence for its benefit for heart health. It's been shown to interact with coagulation. There's also emerging preliminary evidence that it can contribute towards atherosclerosis (ncbi.nlm.nih.gov/pubmed/214.... Although the evidence is in its infancy, given how sensitive APS can be, it's not a risk I would want to take, especially when the benefits are at best questionable.
3. Lecithin is higher in omega-6. Most us would do well to have more omega-3 in our diets.
Clotia• in reply to
Thank you for the lecithin information. It's very clear now that lecithin is to be avoided if you have APS.
I shall look into foods which have high levels of phosphatidyl serine and avoid them. I do have days when I feel 'off' so perhaps this is the reason.
Many thanks, any info is most welcome.
beanieby9008• in reply to
I realize this is an old post, but I am looking for information on foods to avoid. (and I don't mean foods with vitamin K). I have antiphospholipid syndrome and I tend to react adversely to certain things. I have terrible swelling in my feet and legs and edema after ingestion.
Today, I ate a half of a protein bar that contained sunflower lecithin and had an immediate reaction. I slept very soundly for hours and hours and couldn't seem to stop sleeping even though I should not have been tired. I also had some swelling in my feet.
I have been gluten-free for years, but recently had to eliminate all grains to get rid of the swelling. I have stopped eating eggs, peanuts, and have stopped all supplements because I seem to react to some of the added ingredients (I think vegetable glycerin). I also seem to react to soy and sucralose.
It is very difficult to find information about foods to be avoided with this syndrome. It's gotten to the point where I don't even feel comfortable with any processed foods or eating anything outside of my home.
Do you have any ideas of other ingredients or foods I should eliminate? I do drink quite a bit of cow's milk and greek plain yogurt. I would have a really hard time eliminating dairy. I would love to read more about this topic but it so hard to find information about it.
Sometimes it's just good to get information from others' experience. Maybe I should start a separate post, but I wanted to pick your brain first. Thanks in advance!
Ceewags• in reply to
Hi Hidden, I'm new to this site. I'm learning, so, please be patient with me.
I've had numerous positive APS bloods come back positive but no conf. D. I'm just learning. The info you provided on lecithin has blown me away.
I Recently was advised by another dr. to take lecithin due to some bloodwork.
Can you provide me with pier reviewed studies so I can continue in educating myself on the affects of lecithin. I'm also treating fatty liver also....so, it's a bit more confusing for me.
I'm shocked over the omega 6 info. too. I stopped lecithin a long time ago but I cant remember why. Maybe "6".
We have to ck. Every recommendation our des. make. This us getting ridiculous. TIA
Hi this is a really old post. The users name is ‘hidden’ because they’re no longer active on this forum.
Maybe start a new thread to ask your question and get more recent and relevant advice.
Welcome to the forum.
Kelly 🇬🇧
Hi, as Kelly has said this is a really old post.
Please start a new post asking your question?
I will turn off this thread now as really old and some have now left the forum.
Thanks for the Lecithin. I will do some research. I have APS acquired. My legs are all bruised and it hurts to push on them. My doctor referred me to a vein specialist but I am not sure about it. Why do you people beyond my seas think a rheumatologist is the answer? I said that to my family Dr. Who looked so strangely about it. There are no doctors here that treat for APS, and memory issues and all of the pain I have. Seeing an an eye Dr. In the AM due to floaters the eye that are as large as bees. I am using this site to educate him.
Thanks to all.
Thanks for your knowledge, Mary
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