I have found that at times I take oily fish my inr can massively increase.
This made me wonder. Was anyone taking large doses of fish oils prior to a Hughes diagnosis.
What I am wondering is whether the Hughes is there in spite of taking fish oils?
My inr also seems to jump if I eat almonds.
The fish oils will not have caused the Hughes, however like anything else you take in diet or supplement wise they are likely to alter your INR reading, the key is consistency. Fish oils do have an anti inflammatory effect on the body in general. MaryF
No, no, noooo. You misunderstand me 
I was wondering, not if they caused the Hughes, but if use if them prior to diagnosis may have perhaps prevented a diagnosis.
Basically were any of you taking fish oils prior to getting a Hughes diagnosis?
Well I have been taking them since I was a small child, due to the fact that I was very poorly as a child, I have five things, including Psoriatic Arthropathy, certainly did not prevent Hughes Syndrome/APS, however I strongly believe that if I did not have such a good diet, ie ten a day, no junk, lots of exercise when I can, and also gluten free, that I would have considerably more problem with my joints. I do recover from issues with my joints which I put down to the anti inflammatory diet, others my disagree but it works for me and I shall continue long those lines. I eat oily fish twice a week, and also take the supplements on the days I do not have, but also Turmeric and other things, but do not have the problems that go with keeping and INR steady with Warfarin. I am on Aspirin and LDN. MaryF
Hmmn, so even the fish oils did not provide enough blood thinning.
That's what I was wanting answered.
MaryF,
Did you have your thyroid problems prior to the Hughes diagnosis?
I have my Inspector Clouseau hat on at the moment and I am searching for clues
I have been wondering the same thing. I would love to go off of my blood thinners, and just take my Omega 3 fish oils to keep my blood flowing around through my body without any issues. However I think the fact that the blood is sticky, and not t the viscosity of the blood is the issue and why it would not work.
You need anticoagulation for your sticky blood! Omega is not enough as it is not an anticoagulation-drug. Neither is not even Aspirin.
Hi there,
Not spoken in a while as I was taken off blood thinners. It's just that a member has reactivated this thread.
Hope you are well and it's not too cold for you in Sweden right now.
Hi, I am ok thank you. It is very cold in the north part of Sweden. This is a funny country as we can have several "seasons" at the same time sometimes. In October 2018, I think it was, we had summer in the south, automn in Stockholm (middle Sweden) and winter up north!
I eat some olive-oil (not so much) every day. We are different all of us even if we have got APS together. This illness is difficult to understand and I am not a Doctor but as I am triplepositive with persistant high titres all the time my Hematologist says that Warfarin is the drug for me. I am not allowed to take the oral drugs or Heparin either. She is one of my two Specialists.
But I have learnt here that if we have started anticoagulation we must never stop it. That could be exstremely dangerous.
I had been on fish oils for years and although they may have assisted in some part they didn't allow me to move away from anti coagulation.
However for probably a couple of years now I have been working more live foods into my diet. Compared to years back, I eat vastly less processed, prepared or tinned foods now and a much greater proportion of fresh food.
I have read that fresh foods have much greater enzyme levels and that our body needs these enzymes to function properly. I have also read (and come to believe) that our body relies on our cells being charged. Fresh foods or foods with little processing have a greater ability to provide that charge.
We bought an earthing sheet a while back and I believe it did produce positive effects. One of its purported effects was that it encouraged the unclumping of blood cells. I can't say for sure if it worked or not but a few months ago I was taken off blood thinners after being on them for almost 10 years.
Look up 'Earthing' by Clint Ober and Steven Sinatra MD.
You don't necessarily have to buy the book. There are lots of articles to read online.
Good luck with your research. One thing is definite, if you don't seek an answer you will be unlikely to find one.
There are always no cures until they are discovered 😀
Hi, A specialist here told me I should stop eating those strong Fishoilcapsules I eat before warfarin. It affects of course my warfarin level. I eat a lot of Salmon nowadays. 3-4 times a week.
I do not think almonds change your INR at least not much. You can not get rid of Hughes syndrome. Sorry. You can make it easier to have by thinning the blood.
Best wishes from Kerstin in Stockholm
I understand what you are saying Kerstin. But sometimes I am a bit of an awkward so and so and still like to find a solution if there may be one to be found.
Thanks
I think a good solution is to read a lot of the condition. I believe it is useful to understand why things happen and if you try to learn (I must read it in English) a lot you can then decide better how to cope with it.
That is my solution so far.
Kerstin
Thats exactly what I have been doing and am considering self testing some of my theories.
Not in a dangerous way.
I am trying to dot all the i's and cross all the t's first.
Okay, this is sort of my present theory. Based on reading responses from people in various HU communities and my own experience coupled with reading.
I believe that Hughes may be yet another manifestation of inflammation. But in this case some sort of inflammation that affects the blood.
I am speculating at the moment that it is not the first card in the deck but follows on from another issue. I believe that issue may be thyroid related and that is why so many patients complain of fatigue.
I am wondering whether if all the fatigue issues are stemmed, ie the thyroid issues are fixed, that the rest of the issues become quiet.
I have read that if the body lacks iodine it will substitute iodine for other similarly structured elements if they are available instead ie fluoride, chlorine, or bromide. If the body takes up fluoride, I believe that it can trigger arthritic symptoms and a general malaise. There are videos online of cows affected by fluoride and they look very arthritic to me.
My theory is to ensure my diet contains a good mix of iodine containing foods and to check for any improvements
In the US it seems it is impossible to be diagnosed with seronegative APS. I told my neurologist I thought I might have this, since I have migraine, MS symptoms but not MS, a lupus-like illness, and also a really amazing response to heparin after suffering some kind of neurological illness that included seizures. He blew me off by telling me to take Aspirin. When I took Aspirin a lot of my symptoms got better, including neuropathic pain in my arms, abdominal pain, some cognitive problems and sinus pain. Now I'm trying to figure out how to thin my blood more without a prescription, so I have added fish oil and gingko. I figure I have the salicilates covered with aspirin, so I'm trying to find a cocktail of other blood thinning and brain boosting factors. Although, the aspirin really helps, I can't say the gingko or fish oil has improved things so much. I'm still having problems with word finding in conversations & my reading and writing goes in and out, and my memory is dicey. If anyone finds something that works better and can be bought over the counter, I'll be happy to know about it. Maybe I'll try upping the dose. It is interesting to hear that your INR is increased by oily fish. These last two years have been so frustrating, and I feel I've lost years of my life to this. (And I'm 61, so I don't have years to lose.) It's so discouraging that the doctors in the US who know the work of Dr. Hughes still seem so dogmatic about "high titers" and are unwilling to allow me a trial with heparin or warferin. (I have low titers.) I'm on Plaquenil, so I'm hoping so help will come with that eventually.
I need to state I am only a patient. I have NO doctors qualifications.
I have built my ideas based on personal experience and personal reading. What i s true for me may not be for others.
I encourage you to read and watch for any little changes diet may make to your condition. Nothing more.
But as we are all patients discussing our condition we are in a 'privileged' position to be able to judge first hand what any potential benefits or negatives a particular approach has
Overnighthearingloss
I AM SURE (sorry for caps) foods we take have huge / MASSIVE effects on us autoimmune types. Bodies are so complex and are highly individual.
I'm sure it's inflammation - I don't see any other ways. Everything in the body is affected when you have autoimmune disorder(s). Your immune system wouldn't be so picky..they attack anything and everything in my honest opinion.
I cannot be so sure about fish oil - I would worry about the source (where it comes from - farmed fish or natural - if natural which fish etc..!) and mercury contents/contaminants which I often read about. You wouldn't know what's in these things these days.
I was thinking again what you said about having a lupus like illness but maybe no diagnosis, and some have sero negative hughes, whilst others display thyroid symptoms with no diagnosis.
I believe that its the tests that are letting down many people. They may indeed be suffering just the same as others who have tested positive but for some misunderstood reason the tests don't pick it up.
I am bundling all together, because I BELIEVE, they are all related conditions.
To be honest, I wouldn't even think these are "separate" diseases - RA, Lupus, Thyroid, Hughes..these are complex autoimmune spectrum disorder..
No diagnosis usually means there are useless MDs who can't trust his own professional skills to diagnose (in my opinion) - there are many of these at the expense of patients suffering.
The reason I say lupus-like is there has been a lot of going back and forth on whether I have lupus over the years. I've been diagnosed with lupus several time, then un-diagnoised and told I have MCTD or UCTD. Right now I seem to be ?lupus, although my GP doesn't believe I have lupus, because I haven't had ANAs in the recent past. My records were destroyed when the US medical records went digital, but I have had ANAs and positive band test biopsy (?) I just know that the drugs that are used for lupus help me including plaquenil (which I had been on for 7 years), prednisone and methotrexate. Oh, yes, and then there are the times I am supposed to be having some psychosomatic illness. That's particularly fun. It took me 7 years to find a rheumatologist who put me on plaquenil, but at least I did get put on plaquenil and it helped greatly. Now I'm older I just don't have more time to find out if blood thinners would help with whatever is going on in my brain. So, I'm one frustrated gal!
Sorry if I'm repeating myself. Another brain thing.
Oh, I've read that APS isn't inflammatory.
Hi Overnighthearingloss,
After suffering a number of autoimmune issues (including sudden hearing loss) since being diagnosed with APS I am thinking along similar lines to you. And that is that the Hughes may just be one item in the bigger bucket of immune issues and that these issues may not so much be a result of the APS but in company with it.
Re the fish oil, high dietary salt intake is closely linked to hearing issues, specifically Menieres Disease. Bread is the biggest contributor of salt in the western diet but fish oil caps are also high in salt. Maybe worth considering by anyone with related hearing issues.
Laurie
I wanted to talk about fish oils as I wanted others opinions on the effectiveness of them.
The big differences I have noted have been when actually eating a large portion of oily fish or nuts.
I was wondering whether fish oil supplements may be an alternative source.
But they may not be.
I am also aware that there may be something else that is causing the inflammation that at present the anti coagulants address by applying a plaster.
I am, in my own way, trying to find a way of not needing the plaster.
I think it might be possible that it can be found within the diet but this is something that feedback from others will be able to support or squash.
I've been on Warfarin for 6 years, but still had migraines & fatigue, some brain fog. Have been taking Norwegian Cod Liver Oil Tablets (2 per day) for 3 months and can say that my symptoms are generally relieved. I can't guarantee that it is the cod liver oil, could be a "remission" of sorts, but am going to continue with the tablets. Tablets do increase my INR by almost a whole point. Good Luck and be sure to share anything that works!!
My hearing loss was sudden. I was given to believe that it was possibly a family thing, but it wasn't. It was suggested it might be menieres but I think 'menieres' is something triggered at certain times due to diet or medication. I think that is why it can often go quiet.
Have you got any hearing at the moment?
I originally suffered moderate loss in one ear and mild in the other literally overnight. This improved a little over the next couple of years but then while very sick with a perforated duodenum last year the hearing relapsed and believe it or not the hearing loss swapped ears. Just proof that its APS related. I did find that reducing salt in my diet helped and menieres is known to be connected with APS sufferers.
There have been a few articles on fish oil's impact on the inr when taking warfarin. It looks like there is an unknown factor in some people that yes causes it to significantly impact the inr. There are other people in which it doesn't.
For example, here is a case where "A 67-year-old white woman had been taking warfarin for 1(1/2) years due to recurrent transient ischemic attacks. .....This patient has her INR checked in the anticoagulation clinic and is followed monthly by the clinical pharmacist. Prior to the interaction, her INR was therapeutic for 5 months while she was taking warfarin 1.5 mg/d. The patient admitted to doubling her fish oil dose from 1000 to 2000 mg/d. Without dietary, lifestyle, or medication changes, the INR increased from 2.8 to 4.3 within 1 month. The INR decreased to 1.6 one week after subsequent fish oil reduction, necessitating a return to the original warfarin dosing regimen. ..... This case reveals a significant rise in INR after the dose of concomitant fish oil was doubled. Patients undergoing anticoagulation therapy with warfarin should be educated about and monitored for possible drug-herb interactions."
Link: ncbi.nlm.nih.gov/pubmed/147...
Here is a snipit from an article on "Fish Oils and Warfarin"
"Conclusion -- There is no evidence that taking both warfarin and fish oil increases the incidence of bleeding. However, there is no clear consensus as to whether fish oil affects INR. One small study found
that 3 and 6 grams a day of fish oil had no significant effect on INR, whereas a single case study
found that 2 grams a day increased INR significantly. Thus, it would appear that supplementing
with 1 gram a day of fish oil while on warfarin is safe and does not affect INR.
It is not clear whether higher fish oil intakes may affect INR, so it is advisable to increase INR
monitoring frequency when changing one’s daily fish oil intake. It is possible, but certainly not
proven, that taking fish oil and warfarin together may reduce the amount of warfarin required to
keep the INR in the therapeutic range."
Link: afibbers.org/resources/fish...
Thanks for the research! I'm going to look into upping my dose.
Regarding diet's effects on autoimmunity: you may profit from reading a post begun about a year ago, which begins with " curiosity may have killed the cat, but . . . ". The original poster does note a strong corrolation between food and autoimmunity.
Types of food trigger either inflammatory or anti-inflammatory immune responses. This is good. But the Standard Western Diet is not balanced; there are too many inflammatory inducing foods and not enough anti-inflammatory. Fish oil is an anti-inflammatory.
But remember autoimmunity is, basically, an error in our bodies' immune system database. Eating an unbalanced,diet, or eating a food you are allergic to, can in effect keep the immune system on overdrive causing it to malfunction and make an error. But once the error is incorporated into the immune system database, the error remains. Your antibodies may rise and fall depending on healthy life style as well as circumstances beyond your control, ( stress, exposure to infection,) but the immune system's database is compromised. It now confuses a common body lubricant with an invader,(Sjogrens,) or a DNA or RNA fragment with a virus, ( lupus, ) or nerve coating with an enemy,( MS,)
Exactly what part of the clotting cascade is identified as an invader by a Hughes immune system is a matter of speculation. Platelets? One hormone released during the clotting cascade? Or is it another hormone? Or all 3?
It is possible that what today we call 1disease, " Hughes Syndrome," will someday be seen as an umbrella term as we will know exactly which aspect of the clotting cascade each patient is reacting to. ( this would explain why we respond so differently to different anticoagulants.)
To return to your fish oil observation; the purpose of anti coagulation therapy is not just thinning the blood. It is also hopefully finding which anticoagulant calms down the immune system by reducing the number of " enemy antigens" that your immune system feels it must respond to. Many patients' fatigue undoubtedly occurs due to the intersection of autoimmunity with thyroid dysfunction. But much fatigue comes from just plain old over-active immune system. You are not fighting the flu every day, but our crazy immune systems think we are fighting an enemy as evil as the flu. so. .. we're as exhausted as if we did have the flu.
But I do heartily agree with you that eating anti inflammatory foods, such as fish oil, vegetables and fruits, will sooth our over active immune systems. But my immune system believes in ghosts. Instead of seeing and recognizing platelets as " friends," it sees them as " potential enemies.". If the number of these potential enemies rises, as it does with reduced warfarin, then my immune system will attack, which will form clots. (sigh!) Thinning the blood will help, but according to this theory/ model, finding the exact thinner that fools the immune system into tolerating the " evil platelets," ( or evil hormone, or evil intermediate chemical reaction) will have a greater positive help. It will turn off, or at least down, our insane immune soldiers!
Good luck! Finally getting diagnosed is a victory for all of us; but adjusting to that diagnosis is very, very hard.
By the way, I should have noted above.: BK2006 is the poster who started the " curiosity killed the cat" post.
I was always one of those annoying kids that always asked, "Why"?
So i suppose at the moment i am taking the same approach to being ill especially as at best the numerous meds i am on are at best stemming the condition.
I find it difficult to accept that in an age when we have gone to the moon ever larger numbers of people are chronically ill with no prospect of a cure.
It takes the medical profession millennia to implement new practices. So if I want an answer whilst there is still a breath in my body I feel that maybe it is incumbent on ME (I mean individuals), to attempt to find the best way forward.
Sometimes stated beliefs, even those held by the medical profession are overturned.
So I have started to throw questions around in my head as to what is really benefiting me. And then indirectly benefiting friends or family that I cant play my part with properly when ill.
In a day and age when euthanasia is being debated and will likely become legal, and with no wish to expire early, I am looking more and more to ways that I it might be possible to rewrite my diagnosis's.
I found out that DNR (Do not resuscitate), was written into my hospital notes during a previous hospital admission without my or my families knowledge.
I know that I am looking after my best interests.
healthunlocked.com/lupusuk/...
This is a posting of some more of my 'research' on the HU Lupus forum.
I don't know whether it will dot any i's or cross any t's with others
Actually, my physician Father, a good 60 years ago, was dismissed by his contemporaries as a paranoid idiot due to his vocal opposition to fluoridation.
In today's culture we are all exposed to hundreds of chemicals each day. Isolating them and understanding the biochemistry of their effects on people is a complex, often unfounded feat. In general I agree that we would all be healthier if we avoided as many chemicals as we can, But where does one draw the line? After hearing about the nasty stuff in movie popcorn I stopped purchasing it --though I loved the taste. But bottled water at the theater? Is that water bottle BpA free!? but if I drink nothing, my back will become sore, as it usually does if I do not guzzle water. we all have to run our little cost benefit analysis. For me it's nada on the popcorn but yes please on the water. ( as it is yes please on the warfarin.)
I thought you may have had some medical links. Actually I have read that some people expressing concerns about fluoride have effectively had their careers ended.
If that is the case it may take a lot of bravery to go against the tide, and its always easier to swim with it
Which returns to my earlier point about patients educating themselves
Just a reminder that there are salicylates in a lot of foods and spices including almonds, ginger and cranberries. Perhaps being in food makes them act differently that aspirin, or the chemical compound might be also a different chemical version of salicylate, or beneficial co-factors may also occur. That is why I am trying to find non-salicylate blood thinners, since I think I have as much salicylates as I need from aspirin. Fish oil seems to act differently, as does gingko. I'm thinking of trying to add hawthorne, too, or perhaps searching for a homeopathic remedy. So if all you need in terms of a blood thinner, perhaps salicylate containing food maybe enough.
Should us Huggies be eating coconut oil?
Moods...emotions and low INR
Memory improvement on warfarin
