APS antibodies, non typical symptoms

[drob32]

I just had the Cyrex Assay #5 done, which tests for most known autoimmune antibodies. I was negative for everyone of them but tested elevated in APS antibodies. I was negative for ANA, and anti-nuclear DNA as well.

Phospolipid antibodies (reference 0.2 - 1.3) My result: 1.55

It doesn't seem like I'm very far out side the reference range, but I'm told this is a highly sensitive test.

APS would certainly explain some things, however I'm not totally sold on it yet.

My current symptoms are:

Eye sensitivity (used to have this a decade ago but went away for a while).

Patchy hair shedding. Gets itchy and comes out, but I never seem to lose hair since it seems to grow back.

High cortisol and water retention (in cheeks/ abdomen)

General fatigue

Issues with word recall/memory

Cold hands when eating (but not always)

Canker sores/mouth issues (randomly occur)

Platelettes in normal range, but low normal (155K)

These symptoms match high cortisol adrenal dysfunction more closely than APS. I've never had an issue with clots, but I will be getting my INR checked soon.

Is aspirin strong enough to thin the blood effectively?

Does thinning the blood help with fatigue and cognition?

Should I test APS antibodies again? Is it possible I got a false positive?

[MaryF Administrator]

Hi firstly where are you? If you have had a diagnosis, you are indeed lucky, it is far worse for this NOT to be picked up, If in the UK our charity data base carries a list of UK specialists who understand this condition. As your GP/specialists is keen on doing tests at the moment please make sure they test your iron, B12 and Vitamin D as these levels need to be kept in range for best outcome with autoimmune disease. Your post also hints heavily towards a Thyroid issue, this will not be uncommon as people with Hughes Syndrome/APS often have a Thyroid disorder also. Unfortunately the TSH test is narrow and also not really fit for purpose, your symptoms must be looked at alongside the TSH tests. Thyroid UK on this platform is used by many of our members because of this, and vice versa if some of their members get found to have Hughes/APS. I hope this helps. MaryF

ps both Hughes/APS and low Thyroid function will cause brain fog one way or another!

[drob32 in reply to MaryF]

Thanks for the feedback. I'm in the United States and have no idea who the APS experts are here. My iron, b12, and Vitamin D are at optimal levels.

My free thyroid levels meassured are optimal, however from the extensive research I've done, high cortisol can prevent thyroid hormone from entering the cells. My TSH is 1.6 btw. My free T3 is right in the middle of the reference range. My RT3 is near the middle as well.

I even experimented with thyroid hormone, and while there were times when I felt okay, it seemed to drive my cortisol even higher, and overall made me feel worse.

A little over a year ago I was doing great, however, after a knee surgery (ACL), and my over use of stimulants to get back into physical activities, I felt like this is when I "broke something." More likely I triggered APS antibodies.

I do have cadaver tissue as my new ACL, so I wonder if that could be triggering the response.

[MaryF Administrator in reply to drob32]

Thyroid Change, a charity in the USA are bringing about change literally, including choice of treatments. Here is a list of Hughes Syndrome/APS specialists in USA, some on this list: apsaction.org/

MaryF

[drob32 in reply to MaryF]

Thanks, I'll take a look!

[Manofmendip]

Hi

I asked my colleague Mary to reply to you and I fully agree with what she has advised you.

Good luck and best wishes and keep us updated.

Dave

[Lure2]

How old are you? Do you have any relatives with these symptoms?

What do you mean with "Eye sensitivity"?

If the symptoms reduce with baby aspirin it is probably enough.

I have APS with all the antibodies and in high titres since 2002. The first 8 years it was enough with baby-Aspirin but after an Hyperparatyreidosis-operation I was forced to have warfarin to avoid the symptoms.It is said that an operation can brin on the APS. For me it did no doubt,

Some members here are seronegative. They have the symptoms but the antibodies for APS are negative. Some members have one year positive and the other year negative antibodies. I do not think you can have false positive antibodies like that people got for syphilis in the beginning of the last Century.

We need an APS-doctor if we get a diagnose! That is very important. We need also anticoagulation as our blood is too thick. Most of us need an INR around 3.5 or even more. The doctors are so afraid to let us go high as they think we will have a bleeding which is very rare actually.

I like one book very much. (It is written some years ago but Kay Thackray has this illness and she describes very good how it is to live with this illness and writes about the different symptoms). She has written "Sticky Blood Explained" and also "More Sticky Blood". When I read the first book (I have it in pocket) I understood that I had APS and I had to do as the doctors said and start warfarin.

I live in Sweden and I am 70 years old and selftest and warfarin made most of my neurological symtoms to go away! This was 4 years ago.

Best to you from Kerstin

[drob3232 in reply to Lure2]

My mom had issues with blood clotting but only if she took birth control pills. I had major knee surgery last year and did not have any issues with clotting.

Eye sensitivity (floaters, flashes/sparkles in bright light the day time sky, possible optic nerve inflammation--if i push on the side of my eye i see a black spot on the other side)

I tried baby aspirin, but I don't think it's resolving my symptoms, definetly not the fatigue or cognitive issues.

What do you mean syphillis?

I'm willing to try anything honestly. I've read that high EBV titers can trigger APS antibodies as well.

[drob3232]

Thanks for the feedback. I did start by going down the thyroid road at first. I agree the symptoms match hypothyroidism, but thyroid hormone seemed to drive my cortisol too high. Based on allot of desktop research I've done my high cortisol is making my cells at least partially resist thyroid hormone.

Before finding these antibodies, I found I had moderately elevated levels of kryptopyrolles, compound heterozygous MTHFR, high Candida IgA (likely external), and hpa-axis dysregulation.

I was working with two doctors. One let me trial thyroid hormone, but slow release and regular cytomel, and I tried different dosages and timings, but it didn't work out. I feel more stable without it. I also ran difflucan for the Candida, and began taking methylfolate for the MTHFR, and zinc and b6 for the pyroluria. (kryptopyrolles).

The other doctor had me do the cyrex test to find out why my HPA-axis was out of whack. Once the antibodies came back, he was pretty sure that was the root cause of all my issues. That leads me here.

I don't have the classic hughes symptoms that I know of. What I do have is fatigue (food causes it often), and word record issues. I also have a bit of the cold fingers that occurs randomly, as well as eye sensitivity.

I'm 32 years old. 10 years ago I had the same eye issues (sensitive, floaters, optic nerve sensitivity). I started a diet, lost a ton of weight, and actually felt really good in 2013.

In 2014 I had knee surgery, and this seems to be what triggered the symptoms which always seemed to be related to "adrenal fatigue," or thyroid issues. But because they wouldn't resolve, I came across these antibodies. Is it possible they are just a red herring?

[drob32]

Yes, I they did give me antibodies then. I never took steroids for the surgery, however. My cortisol is always high now, and I've thought about artificially lowering it with meds, but I wonder if my body is keeping it high to protect against inflammtion. Except all my inflammatory markers like CSP/sed rate/homocysteine are low.

My current symptoms that make my think APS are the fatigue/memory/word recall issues. I'm reading that the sticky blood causes poor oxygen delivery to the brain which is what causes this. Does that sound right?

[jetjetjet]

Where in the states are you ---- I am in N.H.

[drob32 in reply to jetjetjet]

I'm in maryland.

[jetjetjet in reply to drob32]

Not to far away --One gal i know went to John Hopkins there i believe-- let me contact her and if I am right I will get the info if you would like ??

[drob32 in reply to jetjetjet]

Sure that'd be great, thanks.

[jetjetjet in reply to drob32]

still waiting for a reply ??

[drob32 in reply to jetjetjet]

I think, who should be the one replying?

[jetjetjet]

Kristina --I am pretty sure she was the one we need -- it's been awhile so i may be wrong { brain cramps you know } ha ha

I called her this morning -- she most likely working .

i will be gone from home a few hours-- 4 appointments today -- 3 down one to go !! HOORAY

I will get back to you

C & J