More recent results *Updated with fam... - Hughes Syndrome A...

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More recent results *Updated with family history.*

JennaShi profile image
21 Replies

Hi, just out of curiosity would these results be a cause for concern to watch (anti cardiolipin antibodies IgG) I will attach a picture of the results.

Additionally, from my last post, my husband graphed my platelet levels (on Excel computer program) with thyroid levels and found that they no where near line up with them. Did some more checking and they do line up with my Lymphocytes. Hopefully soon we will get more answers.

Please do not comment about thyroid antibodies as they have been high for many years and I am very dependent on Armour and my levels are optimal, thanks.

Additonally I should add past history: My daughter was born about 2 1/2 weeks early, (normal height weight). High blood pressure (probably due to stress) and there was leg swelling. Doctor performed a Left Venous Doppler? looking for DVT and only found spontaneous and spastic flow as well as compressibility and augmentation. No signs of DVT.

Family: Both my Great grandma (his mom), grandpa and uncle (his son) had heart problems. They all had oversized hearts, Grandpa was on blood thinners, had heart valvue replaced, and stroke. Uncle had knee surgery, slipped and feel sometime later and died. found out later that an artery was 80% clogged (don't have more details) and that there were two clots so even if my aunt wouldve been there, there wouldve been nothing she could've done as they lived up in the mountains away from the hospital. My great grandma, and grandma (her daughter) both had alzheimers and my mom had MS.

The reason I share this is because there are alot of "unknowns" and health issues; some of which are auto-immune related. And often one of the arguments that I get is, "Well ANAs show up in normal people." Well that is all fine and dandy, but you can't put that argument on someone who already has one auto-immune disease and family history of auto-immune. I apologize, as I have seen a few doctors lately and these are the arguments I get and I personally do not think that they are worth continuing.

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JennaShi
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21 Replies
HollyHeski profile image
HollyHeskiAdministrator

Hi, Im sorry I cant read from my phone, and wont be home until tonight.

Just a quick question, did you mean to post this on our forum? Sticky blood/Hughes/Aps?

JennaShi profile image
JennaShi in reply toHollyHeski

Hi Holly no problem and yes I did.

KellyInTexas profile image
KellyInTexasAdministrator

Glad to see you here, JennaShi.

Can you please be specific to you question? Is the ANA in particular?

I have been told by my Rheumatoligist that’s it is a marker of inflammation. When a patient has clinical symptoms of auto immune disease that specifically fall under the umbrella of the auspices of Rheumatology, then these ANA test being positive are meaningful in that regard.

They may or may not be specific to any particular rheumatic Diseases, “ specifically, but is more strongly associated with lupus than elevated RF or sed rate .

How is the patient presenting? What other symptoms or labs are positive? It’s about joining up data.

A positive ANA would strongly point to the need to run more specific like double stranded DNA.

I would be interested in making sure your thyroid is investigated and managed if need be. I see at the bottom of the page it flagged. Many problems can arise when this happens. I will let MaryF advise you here, as she has great expertise in this area.

It looks like the traditional anti phospholipid panel is ok, but I do not see any of the “additional antibodies “ tested . Those would be the phosphatidylserine, and a few others in that same grouping. This is not a complete Avise panel for the prothrombotic antibodies . It did not include them.

JennaShi profile image
JennaShi in reply toKellyInTexas

Hi Kelly, thank you for your note. My question is more geared towards the Anti cardiolipin IgG antibodies but I also am curious about the ANA (both readings) if you know anything. My functional medicine doctor wrote the “borderline” as he isn’t familiar with the Hep 2 test but after researching online it seems that the Hep2 is more accurate than a standard ANA.

Thank you, I didn’t know this about the ANA either (your statement about inflammation) my sed rate and esr have always been within range.

It shows on here that DSDNA was tested but was low so I am negative for Lupus. I didn’t know there where other APS tests?

Yes my functional medicine doctor ordered this one as it was new to both of us and we didn’t know what to expect.

Thyroid antibodies have always been for many years and I am highly dependent on Armour and have optimal levels. This is the reason I am often overlooked as claims are made that my (rising) ANA is due to these antibodies. I appreciate you help and look forward to talking more with Mary. Will speak to the Hematologist about this as well when I see him.

KellyInTexas profile image
KellyInTexasAdministrator in reply toJennaShi

I’m sorry, I just saw the last paragraph on your initial post about not needing to post about thyroid levels. ( just got focused on your labs!)

I’ll try to dig out some of my Avise labs from past.

JennaShi profile image
JennaShi in reply toKellyInTexas

Its alright, I’ve just got tired for talking about it as thats what is mostly focused on 😄. Thank you, I appreciate it!

I have a previous post on my page that talks about family history if you are interested in reading.

bookish profile image
bookish

Hi JennaShi, good to see you. Everyone here will know more than I, but might be worth copying your Neuro post (family history etc) and perhaps taking a look at symptoms list on ghic.world/ to see if anything else relates. Best wishes

JennaShi profile image
JennaShi in reply tobookish

Thank you and it is nice to talk with you again. i will see what I can do and take a look at the website!

KellyInTexas profile image
KellyInTexasAdministrator in reply tobookish

Thank you for putting that on!

KellyInTexas profile image
KellyInTexasAdministrator

Jenna,

Here’s what I like to do. I like to ask the following questions:

1. What do we know?

2. What do we THINK we know?

3. How do we know it?

You are at the right stage to ask these questions, especially when it comes to your mother.

Let’s really examine my three questions in light of your late mother. ( I’m so very sorry about your mother. I lost my mother to APS in my mid 20’s.)

1. You know she had MS, a neurological auto immune disease.

2. Did she? Probably. Many APS are initially sent to MS specialists. Was a lumbar puncture done to confirm MS? I’m guessing yes. APS mini clots can cause lesions on brain and also clotting to tiny vessels that supply nerves to spine can cause balance issues, and more worrisome, and as evidenced on scans, transverse myelitis and fluctuating myelopathy. I was Under the care of two neurologists at an ms clinic, even though it was known at the time I had APS, and not MS. An APS Specialist was at the neurology center- and saw both demographics. I only say this so you are aware and can think back . Was she absolutely a classic case for MS? Any chance she also had APS along with it, or do you think , looking back, or were there discussions at the time that MS didn’t seem to be the right fit?

3. In other words, “ How do we know it?”

JennaShi profile image
JennaShi in reply toKellyInTexas

Thank you, you’re note is very helpful and I will refer back to it. I am equally sorry to hear about your mom. Its very heartbreaking to lose the ones who especially close to us. I’m not sure if you are writing these questions rhetorically or if you want me to answer them. But they are most definitely helpful!

I had no idea that there was a correlation and will see if I can get anymore information from my dad. I do know she was diagnosed in college through unfriend but I don’t know what kind of doctor or what tests were done, but Im sure there was a lumbar puncture involved. She also had seizures, but as a child we didn't talk about health problems very much.

KellyInTexas profile image
KellyInTexasAdministrator in reply toJennaShi

I don’t know if there is a correlation or not, but you do need to let your doctor know.

You can answer them if they are relevant. It’s a place for you to start thinking- the MS is significant. If you think there is a chance it was not MS it’s VERY significant.

JennaShi profile image
JennaShi in reply toKellyInTexas

Thank you, it sounds like it would be significant, I’m afraid I don’t know enough about APS or MS to decide whether it was specifically one or the other so that is why I hoped to find my information through my own testing. However I also realize that sometimes we don’t inherit the same health issues. I may do some reading and talk with my dad and then possibly answer back if I find more information. But you’re right this is a very good start!

KellyInTexas profile image
KellyInTexasAdministrator in reply toJennaShi

As I don’t have ms, I don’t either. I absolutely don’t advocate playing, “ doctor google.” I don’t think it’s a good idea.

I also have epilepsy. I was sent to a neurologist, and when he suggested I had epilepsy and he was going to test me for seizures I told him , “ surely not- I would know if I were having seizures!”

He explained that I was envisioning ,” Hollywood seizures “, but in fact many seizures were not of that variety.

I had never heard of APS until I was tested.

I have never sent out for any of my own tests.

I think it’s best left to your doctors, but I do think you should be clear on your symptoms, and your family history.

JennaShi profile image
JennaShi in reply toKellyInTexas

Thank you, I appreciate your advice, I wouldn’t otherwise either, but if I hadnt, I wouldn’t have gotten anywhere with doctors. I will most definitely brings these things up to the new doctors that I see. I am sorry to hear about your neurological issues and epilepsy and am so glad you have a great doctor who is very knowledgeable and has your well being in mind. I do not know much about different types of seizures. Except that some can be violent and others more like the twitching of eyes; this what i was told that my mom would experience (eye twitching seizures).

KellyInTexas profile image
KellyInTexasAdministrator in reply toJennaShi

I’m not a stickler to rigid testing criteria by any means- don’t misunderstand.

I just have a personal experience that I flagged for, “ chromogranin A “ being out of range when I was in mid 30’s and very ill. It flagged for neuro pancreatic cancer- p- net.

I googled like crazy. I was told with my symptoms ( gastro paresis, very ill... weight loss, violent vomiting ) it was likely a glucogonoma.

I underwent a endoscopic pancreatic sonogram. No ( secreting) tumor!

I decided then and there that no longer were doctors going to give me a death sentence without proof first.

I’ve also learned to have the other way around. Lab values are simply INDICATORS. I did not have pancreatic cancer. Elevated chromogranin A is indicative also of Mast cell activation syndrome- often seen with APS/ Sjögren’s/Lupus.

So you are right. Have a look. I’m not saying ,” don’t use your intellect.”

But don’t let it limit your thinking. A GOOD doctor can use your findings to expound upon. Without a medical degree we can easily go down the wrong path, or even a dead end. We can miss the right path that takes us to the proper destination.

JennaShi profile image
JennaShi in reply toKellyInTexas

Ah I see what you’re saying and very much agree. That sounds like a scary experience and googling can create an unhealthy fear of what may or may not be! I do think it’s helpful to have both because sometimes we experience things differently outside of the usual and some doctors just dont have the experience or knowledge or just dont care. I am glad you do not have pancreatic cancer!

Referring to your chomogranin A, have you looked into Mast cell to get a confirmation? I realize even more so how much there is still unknown.

KellyInTexas profile image
KellyInTexasAdministrator in reply toJennaShi

Yes, I see an APS Specialist for this and APS Specialist for this. I’m no my way out of house right now- but the answer is yes I have this.

JennaShi profile image
JennaShi in reply toKellyInTexas

APS specialist for APs and Chromogranin A? I hope they will be able to confirm soon that it is for sure not Pancreatic cancer.

MaryF profile image
MaryFAdministrator

Yes you have a very autoimmune family, I have one that is similar spanning the generations. Certainly untreated Thyroid problems, can cause an enlarged heart, (or being on the wrong medication), great that you are prescribed NDT (Armour). Obviously there are also lots of other reasons for heart enlargement. I enclose this paper for you, which is a useful read: the-rheumatologist.org/arti... also our charity website: ghic.world/ At times MS turns out to be Hughes Syndrome/APS, sometimes the odd person has both. We always ask people if their doctors have checked not only their Thyroid but also levels of D, B12, Folate and Ferritin. Lots on here have similar histories with their families. MaryF

JennaShi profile image
JennaShi in reply toMaryF

Ho Mary, thank you for your note, I will look at the links you have shared. It is interesting finding commonalities with family members, isn’t it? And most definitely good to know. Unfortunately most of my family tried to avoid the doctor until symptoms were un ignorable so I am trying to piece these things together.

I didn’t know that thyroid can cause an enlarged heart among other things. Both my uncle and grandpa were suspected to have thyroid problems but I dont think they were diagnosed.

B12, iron, folate, vD as well as platelets and often Wbc (until recently) have been low. I do supplement for all of these, but if if stop they go low again.

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