Sticky Blood-Hughes Syndrome Support
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Fatigue - update

The number one life impacting symptom for me has been debilitating fatigue. It impacts every decision I make and how I spend each limited molecule of energy. While, I have numerous symptoms from migraines, Raynaud's Syndrome, mouth ulcers, occasion slurred words, etc .... -- the one symptom that I have mentioned to every doctor over the last few decades has been fatigue. I tell them all, it comes down to quality of life. I've cried tears to at least four doctors in the last year over how "my quality of life sucks because of the fatigue".

Finding out I was Vitamin D deficient (blood test) earlier this year and adding the daily D3 supplement has raised my energy level about 20%.

Over the last two weeks, my energy has been raised about another 20% due to the following combination:

Iron supplement - 50 mg daily

Aspirin - raised to 81 mg every twelve hours. So I take one baby aspirin (enteric coated for stomach) twice a day.

Vitamin B's. (including B12). I had been taking B's previously, but a huge change I made was getting a weekly pill dispenser that I fill on Sundays. I am sure I was terrible at remembering what to take prior to having the pill container.

Here are links to my two recent posts on iron studies and fatigue. Do not add iron without reading them.

A few weeks ago, my doctor took blood for the PLT Resistance Asprin Test. This blood test lets doctors know if you can try more aspirin since you don't yet have platelet dysfunction from taking aspirins. Since mine came back at 621 which is greater than 550, my doctor said to up the small dose aspirin I am taking for hyper-coagulation to twice a day. She is going to retest the aspirin platelet dysfunction in a few months to see if I can stay at that level. Why hasn't any other doctor done this blood test on me before?

Those of us who have had fatigue for decades realize we have good periods. Mine is generally a very short window in the fall and in the spring. In addition, there are ups and downs throughout the year. Therefore, all scientific studies on fatigue will have some people (generally around 11-15%) have their symptoms improve while on placebo. It may have nothing to do with the mind, but rather that there are times when the symptoms subside some.

Therefore, I can't say whether this glorious last week filled with energy has been due to the additional supplements or an outside factor. Time will tell. What I can say is I have not felt this much energy in years. While I'm still taking a lay down in the afternoon for an hour, I am getting back up and able to do things for the kids. It's amazing.

While getting back to a total of 40% of what other people's energy levels are, I still have to watch myself. Yet, 40% is so much better - hooray! I haven't taken a nap in the car while waiting for kids. I went to the grocery store when we needed items for dinner last minute. We aren't eating pizza and macaroni & cheese every night. It's down to every other night. :-) I started tackling the four foot high laundry that covers much of the basement and cleaning out one of our daughters' room of toys she has out grown.

While I pray that the energy stays I have the added burden of trying to do all the things on the to do list that have pilled up over the years. My therapist has me doing five things. I see her every 6-8 weeks. More often would be great, but therapy is really not in the budget - yet it's a necessity. Four items for me right now:

1) Don't look at the mountain of "to do's" straight on. It would be depressing. Take something from the mountain to do each day and know that you accomplished great things. The kids have suffered due to the fatigue. Having a mom with energy is always beneficial to children. My husband owes more to his x-wife every month than he earns. Every month he goes deeper into debt. Right now he is a $100,000 in debt to her. The sheriff's have been here in the past to try to put him in jail for not being able to afford his alimony. Our power has been turned off numerous times this year for non-payment. It's a crazy system here in the United States. Yet, his x-wife lives alone (no kids in her home) and has received hundreds of thousands in dollars just in the last two years from inheritance from the deaths of her parents, let alone my husband's income that goes to her. She has been in rehab for alcoholism and earlier this year lost her license due to a DUI, but it's hard to feel sorry for someone with boat loads of money while all that my husband earns goes to her. Here in the United States, they don't count that we have zero in the bank and she has tons. It's what he earned in the past while they were married that counts. He went through bankruptcy a few years ago, but that does not wipe out alimony. At the same time, our family is truly happy (poor and messy piles and all - but tons of friends). My husband's x-wife is miserable with lots of money. I feel sorry for her.

So it's not a matter of wanting to work. I have to work and earn money. I can't when I have zero energy. My business I owned went under for numerous reasons, including my sleeping on the floor of my office, forgetting clients', losing my sight...... In addition, I am being sued by a woman who flashed her chest to one of my cameras during her corporate office party and then her company fired her for what I presume was behavior unbecoming of an employee. She is suing me because she lost her job for being stupid. So not having energy is not an option. I have a thousand to-do's from orthodontics, to one of our children is autistic spectrum with OCD, to earning money, to putting my old business to bed, to house a mess. Looking the mountain straight in the eye would be overwhelming. So I have been taught to glance at it from the side and pull something out.

2) Continue to be centered in joy and happiness.

Mindfulness (focus on the Now, without worrying about tomorrow).

Don't look back at things missed because of fatigue. Be happy in today's energy.

Re-frame (put a new picture frame around the items that appear distressing).

3) Make the supplements a priority. It takes 21 days for new things to become habits.

4) Gratitude. Make an oral list of all the things you are grateful for today. My list is huge!

There was a 5th item my therapist has me working on, but I forget what it was. Brain fog and many other symptoms (such as dizziness) are still here, but with some energy it's like a weight has been lifted.

I believe it is the combination that is helping. The two baby aspirins, the Vitamin D3, the iron supplement (slow release and easy on stomach), and the Vitamin B supplements. All four of these have blood tests to see if I am overdoing it.

I'm praying this new found energy (more than I have had in years) stays. :-) So far the supplement trial seems to be really helping. Time will tell. But I can't allow stress to sideline me. There is dancing with the kids, and enjoying every day, and date night with my husband (even if it is peanut butter and jelly sandwiches) at the top of the "to do list". :-) I truly feel blessed.

16 Replies

I am glad to hear that you feel so positive. That is really important.

You have posted here earlier and I remember a couple of things I would like to ask you; Is it your new Rheumatologist that have put you on the double Baby-Aspirin?

Have you heard from the APS-specialist that prof Hughes suggested?

If you see a specialist on APS you can perhaps increase your energy level to over 60 %.

Best wishes from Kerstin in Stockholm

1 like

Hi Kerstin! It' the new hematologist in NYC who doubled the aspirin.

The APS specialist recommended by Dr Hughes won't be open for at least 6 months, if not longer.

I agree. How fabulous that would be to get to 60%.



You are obviosly on your way.

Stay well and positive!



Oh, no, six months! I was hoping sooner. Was it the hemotologist who told you just stop seeing doctors?


Hi Ann! It was a rheumy in Philadelphia who told me to give up hope. Not NYC. :-)

I saw benefits from Vitamin D3 sooner than 6 months. But at 6 Month, 20% less fatigue consistently. So that wasnt part of normal up down/up cycle. It's lasted too long to be that.


I meant 6 months until the rheumy in Colorado opens her practice. I just got on a high dose vitamin D regime. I can't figure out how it is so low in the first place since I have been taking Vitamin D for more than a year. At the moment I am taking Prednisone, so I'm feeling pretty good. Too bad it is temporary, since I can't stay on it for long.


Been reading about high vit d3 and how it seems to increase energy levels and keep colds and flu and many other nasties at bay. However also mentioned was that to just take high doses of this alone may cause extra calcium in the body that does not automatically make it to bones and teeth. As such it can potentially circulate in the blood and then be secreted into ateries. In order for proper absorbtion you need K2.

I have read that warfarin acts on K1 and K2. So the question to answer is whether it would be safe to supplement with K2 if warfarin is designed to act against it?

Yet another conundrum that is thrown up by the use of big pharma drugs...

Are we really meant to get well?


How much D are you taking? D3?


A cardiologist put me on 50,000 of D2 once a week for a few months. I've been taking 800 to 1000 D3 for more than a year, plus I went to Florida for a week in the spring, but still my D is low. I've been so photosensitive that I have been living like a vampire. Now that I've been plaquenil for almost a year maybe I can be less afraid of the sun doing me in.


My last test was

Vitamin D, 25-Hydroxy

28 30-100 range

An osteoporosis doctor had told me to take 1000 IU of D3, but I guess it wasn't very effective.

I hope the Vitamin D loading will help with my fatigue and maybe pain.


Thank you for a long and informative post again. I have also intermittent fatigue. Last one was from the end of July to the beginning of October. Long and difficult. I think it was partially and mainly because of iron deficiency, secondly because of hypothyroidsm and question mark is the UTCD/ lupus or APS. And all these are mixed and affect to each other. Like you my most difficult symptom is the fatigue. I am happy now, most of it is gone at the moment. I take this . It is 100 mg and doctor ordered double per day (important to talk to doctor first, if take more than recommended) . And it took almost two months to work. After one month ferritin was only 9 (should be over 13).

D -vitamin have taken for at least five years 50 mcg. No flues almost at all. Overnigthearinglose, where did you find that information, that D-vitamin causes extra calsium with Warfarin? It is interesting..


Sorry only just seen your response.

I have read that very high doses of vit d can cause excess calcium in the blood that can then 'potentially' be secreted into arteries and veins and 'potentially' then exacerbate a potential clotting issue. K2 is found in many fermented foods and supposedly acts against clotting whereas K1 (regular potassium if I have understood correctly) encourages clotting to a degree.

I read that high dose vit d should be balanced by taking K2 but then read that warfarin acts against K1 and K2.

I will need to refind the info I was reading.

One source, available on kindle is Vitamin K2 and the Calcium Paradox - Kate Rheaume-Bleue.

Also, The Lupus Scandal!! How High Dose Vitamin D3 Cures Lupus in Two Months!! & BigPharma Has Known About It Since 1945. - Jeff T. Bowles

But then i was google searching for further references.


Thank you, it's ok, it is difficult to find posts from old topics. I have taken vitamin d long time high doses, at least five or six years. Not calcium at all. Now with prednisone and all I should start calcium...


Are you on warfarin? What is 50mcg in iu's?


Yes, I have been on warfarin one year. 50 mcg is 2000 iu, but I used to take 4000 iu for many years. Cholecalciferol laboratory test has been in range, but quite high.


Too much calcium in the blood is called Hypercalcaemia (British English) or hypercalcemia (American English). Per Wikipedia: "Normal range: 9–10.5 mg/dL or 2.2–2.6 mmol/L)." It can be caused in some individuals by taking too much Vitamin D3.

While my Vitamin D level was low on my last blood test and my calcium was normal - my doctor is going to give me another blood test 3 months (after being on the Vitamin D3 supplements for a while) to:

1) See if my Level of Vitamin D in my blood goes up, and

2) To make sure the level of calcium in my blood stays in the normal range.

"Symptoms are more common at high calcium blood values (12.0 mg/dL or 3 mmol/l). Severe hypercalcaemia (above 15–16 mg/dL or 3.75–4 mmol/l) is considered a medical emergency: at these levels, coma and cardiac arrest can result." (Wikipedia).

"Although the risk of harmful effects from vitamin D and calcium is small, some people, particularly with kidney stones, kidney disease or high blood calcium, should seek medical advice before taking these supplements."

There was a book that came out in 2011 that discusses the Vitamin D plus Vitamin K2 issue. It's "Vitamin K2 and the Calcium Paradox: How a Little-Known Vitamin Could Save Your Life" by Kate Rheaume-Bleue. The marketing write-up states:

"The secret to avoiding calcium-related osteoporosis and atherosclerosis. While millions of people take calcium and Vitamin D supplements thinking they're helping their bones, the truth is, without the addition of Vitamin K2, such a health regimen could prove dangerous. Without Vitamin K2, the body cannot direct calcium to the bones where it's needed; instead, the calcium resides in soft tissue (like the arteries)—leading to a combination of osteoporosis and atherosclerosis, or the dreaded "calcium paradox." This is the first book to reveal how universal a Vitamin K2 deficiency is, and the risk (in the form of cancer and diabetes, among other ailments) the absence of Vitamin K2 poses. Written by Dr. Kate Rheaume-Bleue, a popular health expert on Canadian television and radio, Vitamin K2 and the Calcium Paradox sounds a warning about the popularity of the calcium and Vitamin D craze, while illustrating the enormous health benefits of Vitamin K2 in making the body less susceptible to dental cavities, heart disease, prostate cancer, liver cancer, diabetes, wrinkles, obesity, varicose veins, and other ailments."

I worry when people come out with what they claim to be the next great supplement. In health, it's always a balance. Everyone's sweet spot is different. There is no doubt Vitamin K2 is important -- but the question is whether we should supplement.

There was a study on Vitamin K2 and it's impact on INR in those taking oral anticoagulants. In this study, they found that "A daily intake of 45 μg of MK-7 (Vitamin K2) significantly decreased the group mean values of both the INR and ucFII by ~ 40%. Daily intakes of 10 and 20 μg of MK-7 were independently judged by two hematologists to cause a clinically relevant lowering of the INR in at least 40% and 60% of subjects, respectively, and to significantly increase ETP by ~ 20% and ~ 30%, respectively. Circulating ucOC and dp-ucMGP were not affected by MK-7 intake. Conclusions: MK-7 supplementation at doses as low as 10 μg (lower than the usual retail dose of 45 μg) significantly influenced anticoagulation sensitivity in some individuals. Hence, the use of MK-7 supplements needs to be avoided in patients receiving VKA therapy."

In the above study, the anticoagulant being used was "Acenocoumarol is an anticoagulant that functions as a vitamin K antagonist (like warfarin). It is a derivative of coumarin and is marketed under the brand names Sintrom and Sinthrome."

From all the above, it looks like taking it slowly and finding what works for you. For me, right now I'm still on Vitamin D3, B Vitamins, and Iron. Specifically, making sure you stay on top of your blood tests and results seems to be key. While there is more science out there, finding a doctor who is familiar with and understands all the above is highly unlikely for each of us. Yet, I wish each and everyone one of you all the best in finding a knowledgeable nutritionist/dietician. I believe every doctor should be taught the above in medical school, but few are.


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