Newbie Introduction: Sticky blood​

Hello,

Due to a myriad of debilitating symptoms, I was originally diagnosed with Chronic Fatigue Syndrome, although subsequent blood tests - taken 3 years apart - have revealed both anticardiolipin and Beta2-glycoprotein antibodies, and a possible TIA experience in between. My most recent brain MRI shows an old lacunar infarct, so I'm not sure if this negates the TIA diagnosis or is in addition to it. I'm currently taking Plaquenil, baby aspirin and fish oil to prevent blood clots, but other symptoms remain persistent (e.g., fatigue, brain fog, headaches, exercise intolerance, and POTS). I would be interested to hear if anyone else in this group relates to my experience, as I understand that the condition of APS is yet to be fully examined by the medical profession. Thanks in advance for any comments.

30 Replies

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  • Hello and welcome. I'm confused as to why you would think that the medical profession don't understand APS/Hughes Syndrome? It is very well established but if that is what you have been told by your Dr then with respect it's time you found another as it's very important that you are treated by an APS specialist, a Dr who treats patients with this condition on a daily basis.

    Frankly, from your symptoms it does sound as if you need a review as if you have had a stroke then a stronger anticoagulant is normally used than aspirin. Once that has been optiminised things should improve.

    Where are you situated as that will help us advise you as to specialists in your area.

  • Thank you for your helpful response. Please correct me if I am mistaken, but it seems that although APS/Hughes Syndrome may be recognized for its thrombotic and obstetric complications, its relation to other symptoms (e.g., dysautonomia/POTS, Temporal Lobe Epilepsy, and chronic fatigue, etc.) and one’s quality of life has not been fully realized by most mainstream doctors at this present time? My rheumatologist here in the U.S. doesn’t believe that the lacunar stroke is anything to worry about, as it is not the type associated with a hypercoaguable state, and so I’m feeling somewhat perplexed as to whether I require further treatment or not. I would, therefore, be interested to know if any other APS patients have experience with lacunar infarcts, and whether these do indeed require further investigation. Thanks again.

  • HI there you need a specialist in the USA who understands this condition, there are many members on here from the USA who can give you advice to who may be nearest to where you live, in the mean time there are some names on here: apsaction.com/leadershipmem...

    You probably need to be on more than Aspirin. MaryF

  • Hi MaryF,

    Thank you for the apsaction link, which is very helpful. Yes, even though I’m currently taking Plaquenil and high-dose fish oil in addition to the baby aspirin, the fact that I am still experiencing many (non-clotting neurological) symptoms may attest to the fact that my blood remains too sticky, and so I shall pursue further examination by an APS specialist. Thanks!

  • DilysStrides If your Dr does not worry about Lucunar Strokes then get him to read this:

    ncbi.nlm.nih.gov/m/pubmed/1...

    Any type of stroke in APS needs to be treated because it shows that your blood is too thick and that is really the whole point.

    As far as dysautonomia/POTS and Epilepsy there is evidence and Prof Hughes writes about these issues constantly. Again see below:

    ncbi.nlm.nih.gov/pubmed/272...

    ncbi.nlm.nih.gov/pubmed/245...

    Chronic Fatigue is a common symptom of our disease and I strongly suggest that you have your thyroid checked and by that I mean your FT3, FT4 as well as thyroid antibodies, plus Ferritin, B12 and Vit D. Also Magnesium is good to check too.

    As I have already said your Dr is not an APS specialist and is doing you a disservice by both the way he is treating you and what he is telling you about this condition. I really do suggest you find someone who will treat you appropriately before you have more damage done to your brain.

  • Thank you for the thought-provoking PubMed paper relating to Lacunar Strokes. I suppose it makes sense that if the blood is too thick, then it can cause a blockage in any blood vessel, large or small, and is therefore not necessarily the result of undiagnosed/irrelevant vascular disease (or from merely a bad headache, as proposed by my doctor). Thanks also for the articles re dysautonomia/POTS and epilepsy, which I find reassuring. My thyroid panel is being well managed by a reputable endocrinologist (no antibodies), although I thank you for commenting on this issue, as I understand that thyroid problems can cause fatigue. I experience malabsorption issues as a result of the POTS/GI motility, and am taking supplements for iron, Vit B-complex, Vit-D and magnesium-potassium chelates (as well as Vit-C), although it wouldn’t hurt to get retested. Thanks for all the helpful information.

  • If you are experiencing malabsorption issues and also have a established thyroid condition, I would suggest you get yourself tested for Celiac Disease. This is a known link with Thyroid disease and Gluten is a very inflammatory substance. Prof Hughes tells his patients to stop eating it if possible. If you do decide to heed his advise get yourself tested BEFORE you stop because once you have eliminated it from your diet you can't be tested. Also because of malabsorption you should test B12 as pernicious anaemia (neurological symptoms in its own right are horrible) is another sign of CD.

  • I agree with the others here....you need to be seen by an APS specialist. I've also learned to follow my gut with Drs. If you think s/he is possibly missing something, then get a second opinion - always. APS is not a flu....it is a serious medical condition and second and third opinions do not make you a hypochondriac. What state are you in?

  • Hi and welcome to our site.

    I can see, when I looked at your info here, that you are 91 years old. I am only 72.

    I wonder how long time you have had this illness? We have found on this site that the Neurologists do not "get" what APS is about - too thick blood that has to be stable and high enough anticoagulated. When the blood is anticoagulated we feel much better.

    Our members on this site sometimes can help to find a Specialist, which you need it you do not live in England, so please tell us where you live.

    Hope you will stay with us here and learn a lot from all our members.

    Best wishes from Kerstin in Stockholm

  • I see now that you do not have a Neurologist at all. Good. Sorry my mistake! We usually have a Hematologist or a Rheumatologist.

    You have had very good info from APsnotFab and Mary F.

    Hope you find an APS-Specialist. Most important.

    Good Luck from Kerstin in Stockholm

  • Hi Kerstin and thanks for the warm welcome.

    I’m sorry to confuse you about my age – MY BAD! I’m actually in my late 40s, although I do indeed feel 91 years old most days. ;-) Blood tests taken several years ago by my rheumatologist revealed anticardiolipin and Beta2-glycoprotein antibodies, and I was prescribed Plaquenil and fish oil, and then later aspirin for a presumed TIA experience. However, since that time, these antibodies have been somewhat discounted as a cause for my current poor state of health (which has actually been going on considerably longer than a few years, but was attributed to previously diagnosed Chronic Fatigue Syndrome). I also have 3 neurologists, as follows: One for POTS, another for epilepsy, and one who prescribes stimulants for debilitating fatigue and cognitive dysfunction. I recently advised some of my doctors about the connection between APS/POTS and some of my symptoms, but was surprised to learn that many doctors are not aware of this phenomenon.

    I hope the situation is better in Stockholm?

    Wishing you a pleasant weekend.

  • When I answer a post I want to know as much as I can about the person like where the person comes from and age and man or woman etc.

    91 years that was really something ........... and so allert and good writing

    Unfortunately many APS-sufferers from the US have big problems to find a Doctor who really knows APS well. As the English are lucky to have prof Graham Hughes and England is also a "smaller" country they have a rather good knowledge of APS. This site is fantastic.

    After 14 years with the three positive antibodies I have now two Experts (one Hematologist and one Rheumatologist) and also a Cardiologist/lung-specialist here in Stockholm. But to begin with I had some bad experiences with Neurologists who did not know what APS was.

    When you get this Specialist I believe you will have not so many diagnoses.

    Stay with us and I wish you Good Luck with finding a Specialist which is a fight for all of us actuallly.

    Kerstin

  • To get the whole picture of the patient is actually a wonderful philosophy, just like ancient Hippocrates who focused attention on the patient rather than on the disease. If I do make it to 91 years of age - and still have my intellect intact - I at least hope there will be better awareness of APS and thus improved therapies.

    Thanks for informing me of the disparity of APS knowledge between the U.S. and the UK. I suppose the fact that British Prof Graham Hughes discovered this disorder would make that situation more likely, although it’s no less disappointing that practitioners in the U.S. are lagging behind. The absurdity is that I am originally from the UK, but then moved to Colorado (where his collaborator Dr. Jill Schofield now practices), although I have been living mostly in Seattle on the Pacific Northwest Coast of the U.S. since becoming ill and learning of my APS diagnosis.

    I’m pleased you have managed to obtain expert doctors in your area, despite initial frustrations. I hope you are now on the road to wellness, although I understand that APS can be a somewhat precarious syndrome. Take care.

  • I have APS and POTS. I'm on baby aspirin and Eliquis and a bunch of vitamins: D3, B2 and chelated magnesium( for migraines), B12 and Alpha Lipolaic Acid (for neuropathy), fish oil, flax seed oil, primrose oil, vitC, and folic acid. The vitamins made big difference. I also follow an anti inflammatory diet (Dr Weil - True Food Kitchen).

    I've had a clean 3T MRI last year and clean EEG...though I do Have a history of seizure disorder. No clotting events.

    I also am exercise intolerant, however have found a graduated cardio program with recumbent bike (aka modified Lavine Program) and daily yoga practice really help keeping the blood moving.

    I also maintain a meditation practice which really helps a lot with cognitive issues ("brain frog"). I'm only up to 15 min for sitting, but have tried to incorporate a daily meditation for life's issues that can set off the flight or fight (dysautonomia/POTS).

    In addition I have a wonderful counselor. I think anyone with a chronic illness should have one. It's good just to get the bad feelings out to a neutral party - not your Drs or husband.

    I haven't done anything for my APS except as noted. I find the dysautonomia (which Drs think autoimmune is root cause) is the real debilitating part of this. I sometimes can't even walk my boys to the bus stop a block away due to it.

    Oh, and I also drink 3 liters of water a day. (Lemon water). I have increased my salt. That said, I stay away from Gateraide - sugar is the number one cause of inflammation in the body and there is so much other junk our delicate bodies just don't need. And there are some wonderful alternatives that are preservative, sugar and artificial sweetener free (migraine triggers). I also started drinking lemon/honey hot water every morning instead of coffee....I feel SO much better in mornings! I also think it helps with GI issues that come with dysautonomia.

    I have found this site best for all this APS. I have found Dysautonomia International ( including their annual conference in DC) to be the tops for POTS website info. Stick blood is best APS book and The Dysautonomia Project best POTS book.

    Hopefully this helps.

    Oh, and I live in CO and see Dr Schofield for APS and POTS. It's good to get a Dr that understands both. And a good PCP that can augment the speciality DR care is a must. Someone who can keep an eye on your underlying symptoms, esp of dysautonomia. My PCP who hadn't heard of APS or POTS has read both Sticky Blood and The Dysautonomia Project is not only my hero, but is also helping me get care for the things my specialists just don't have time for.

  • Thank you for telling us all this!

    I wonder who has written "Stick blood" (the best APS book you write)? You say you live in CO? As I live in Sweden I have not heard of that place.

    Best wishes from Kerstin in Stockholm

  • Colorado USA,

  • Yep, Colorado, USA. I found Sticky Blood via a chat in this group.

  • Sorry - yes, Kay Thackray.

    hughes-syndrome.org/get-inv...

    I bought mine at Amazon. But in all fairness, it is the only actual book on APS I've read....mostly it's articles. So I guess I have only one data point....🙂

  • Sorry, missed your last answer.

    Prof Graham Hughes has written very good books,

    "Hughes Syndrome: Highways and Byways" (together with Dr Khamashta)

    "Understanding HUGHES SYNDROME, case studies for patients"

    "Hughes Syndrome, A Patient´s Guide"

    Also Triona Holden has written "Positive Options for Antiphospholipid Syndrome"

    Finally Kay Thackray has written a second book: "More Sticky Blood" Hughes Syndrome.

    These books I bought some years ago when I wanted to know as much as possible so I guess there are others now with the new oral drugs.

    Kerstin

  • So you talk of "Sticky Blood Explained" by Kay Thackray which I always writes about how good it is?

    I thought that you had found another good book about APS that I should buy.......

    Kerstin

  • Hi JDMiller, Coincidentally, I’m now in the process of arranging an appointment with Dr. Schofield in Colorado, although I believe the wait list might be long… I was interested to read that you are taking Eliquis and wonder how significant it was in helping your neurological symptoms? I also take vitamin supplementation and follow a good diet (PaleoAIP/GAPs), although my non-clotting symptoms persist.

    My POTS neurologist recommended the Levine POTS Exercise Program, but after following it closely for a year, post-exertional malaise symptoms remain stubborn. I will look into the modified version – Is this the one that was developed by the Children’s Hospital of Philadelphia?

    dysautonomiainternational.o...

    I have recently ordered compression hose (30-40 mmhg/waist-high), which I hope will help further, although they can be expensive without insurance coverage. I also drink lots of water and 10g salt daily, and have also raised the head of the bed 5 inches. I have also been prescribed strong stimulants to help with fatigue and brain fog.

    Your PCP sounds wonderful and I’m glad she is supportive in your quest to understand what is happening to your body. Alas, I’ve not found a GP that is so proactive… yet. I’m sorry to hear that your symptoms remain as severe as mine though (I also find it incredibly difficult to walk my dog around my neighbourhood, and your story sounds very similar to mine).

    Thanks for all the helpful information. Is the Sticky Blood book you refer to the one by Kay Thackray? (There are two of them?)

    Thanks and warm wishes.

  • Good luck with getting in with Dr S. She is worth the wait.

    The eliquis helps. It seems I've got a bunch of things that help a bit, but nothing that helps a lot. And def not anything that gets me more good days than bad. I've been trying not to do IVIG cause the side effects scare me, but it might be my next step.

    If you're asking about my neuropathy, then massage has proven the best medicine. Followed by hot baths and warm heating pads. If you're asking about neurological maining the POTS, then the eliquis helps a bit. Dr S said it should help a lot with my cognitive issues....I am unable to work as an aerospace engineer because of it. I think the hydration is key to the POTS. I actually found salt does nothing for me except get my electrolytes out if wack. Oh, and I wear compression socks as well...just took a break from them for summer.

    Oh modified Levine is you basic Lavine modified by myself to fit my unique body. One size does not ever fit all. So I have a recumbent bike and row machine in my home gym and seem to fluctuate around month 3. So " modified Lavine" could mean you maintain month 2 exercises. But there are days even month one is a struggle. But I always drink lots of water when I exercise, and the recubant bike has been a real blessing.

    It sounds like you're doing all the POTS recommended things....even the bed raising. That's commitment!

    Oh and my PCP's kids and my boys go to school together and we live down the street from each other. So I think she gives me special attention because she knew me before I got sick. She's good people, for sure.

    And yes, Kay is sticky blood. Also, if you do Amazon, sign up for Amazon Smile and choose Dysautonomia International as your charity. They are supporting a lot of research for folks like us.

    Do you live in CO?

  • Thanks, I’m on a wait list for Dr S., and will hopefully be contacted shortly to discuss her (busy) appointment schedule. I used to live in Green Mountain, Lakewood, CO, and my in-laws and friends still live in the area. However, I moved to Seattle, WA several years ago, before learning of my APS and POTS diagnoses.

    Thanks for the information re the Eliquis and other therapies you have tried. I seem to be in a similar situation where some treatments help, but are not sufficiently effective at getting my life back on track. Like you, I used to be high functioning (archaeologist) but I’m no longer unable to keep up with normal daily activities, such as career, social life and self-care. I’m also contemplating IVIG, although I too am concerned about serious side effects and am not sure whether I will be further compromised due to an IgA deficiency. I understand that Dr. S also offers Rituxan for some patients, although this drug is also not without significant risk. Have you had any experience with this drug?

    I’ve ordered the “Sticky Blood” books from AmazonSmile with DI as my chosen charity, and I look forward to learning more about this peculiar disorder.

    Thanks again for all your kind recommendations and warmest wishes! Hope you’re having one of your better days.

  • Never tried rituxan. And yes we do seem to be living parallel lives in regards to these disorders/diseases. That said, dealing with this at 91yo must be quite different than my 42years.

    Also visit DI website. I went to their annual conference this year and learned a lot. It's in DC.

  • Hehe, my mistake when setting up my profile with erroneous year of birth, which now persists in perpetual reposting! I am in my late 40s in earth years, but feel biologically closer to 91. ;-)

    I’m glad you made it to the DI annual conference in DC this year and perhaps I’ll see you at another conference sometime in the future.

    Thanks and best wishes!

  • My goodness, what a remarkable group this is, and I thank you all for such helpful and supportive responses! Your reassuring comments and links have helped in my decision to pursue a second opinion from an APS specialist, as I believe that many of my separately diagnosed disorders are inextricably interlinked by sticky blood. Thanks again for taking the time to comment. I wish you all good health and happiness for the future.

  • DilysStrides Thank you for the compliment - that is our aim to raise awareness, educate and where possible give people the support and confidence to better manage their condition so that they can have better lives.

    In that vein and after reading one of yours or JDMiller comments above about neuropathy, I wanted to mention B12 injections. I have most of the issues you both mention, have been tested by the National Hospital here in London under Prof Mathias for POTS so do most of the things you do. I suggest you both get yours tested and unless you are in the top of the range (ranges are set too low), ask for injections as neuropathy is a sign that you are already getting neurological symptoms from B12 deficiency and would need weekly injections.

    Coincidently, I have also just bought a recumbent bike as that was what was recommended by the National Hospital. Id be interested in the program you speak of above if its a downloadable one or online and I can tap into it? You can PM me if thats more appropriate. Thanks

  • Here's the link to the POTS Exercise Program I was referring to: dysautonomiainternational.o...

    Thanks for the info. re B12, which I will look into.

    Best wishes.

  • Thank You I will send this to my Physio

  • You're very welcome!

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