So, “It’s definitely not Lupus,” right? - Thyroid UK

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So, “It’s definitely not Lupus,” right?

JennaShi profile image
35 Replies

Not sure where to put this one either, bit was hoping someobe might be able to look at and offer some advice for this lab result? It is a ANA 12 profile that tye Rheumatologist ordered. I dont know if this will be enough to get an appt with the Rheum doc, but it shows that things are changing, Ive primarily gotten speckled pattern and none blood related has lupus that I know of.

P.s. I already know about the TPO antibodies. I think I got my answer from a before question, that TPO or thyroid antibodies are seperate unless you combine them in the test (so they must be attacking the tissue instead of the nucleas?)

Am also wondering about the C4 compliment if this could explain anything with my Platelets or is it low because of EBV?

Thanks in advance!

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JennaShi profile image
JennaShi
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JennaShi profile image
JennaShi

Thank you for your words. I guess it would be hard to tell if my mom really had MS if its random like you said. Itos interesting that they tested for tpo and not TG as well or in my case TSI, as I have Graves disease post RAI with high TPO antibodies. So it probably does happen regardless of what autoimme issue shows up first.

The one to look out for if Lupus is suspected is anti dsDNA. it is is specific to Lupus. Yours seems to be normal/ negative. The one to look out for if Sjögren’s (sister disease to Lupus) is likely is anti-Ro & La. both usually have positive ANA which you do have but only mildly elevated. Only 5% of people with Lupus have negative bloods but 25% of people with RA and Sjögren’s do.

JennaShi profile image
JennaShi in reply to

Thank you, yeah I believe something is in the early stages but I am not exactly sure what it is. I shared another ANA I believe on a previous post but it wasnt specific either. So perhaps I need to wait longer?

in reply to JennaShi

If your symptoms are indicating another autoimmune disease it’s defintely worth asking your GP. But you would be very unlikely to get a diagnosis of Lupus without anti dsDNA unless you had clear kidney involvement. However there are lots of other conditions that can show ANA and also healthy people can have a positive ANA like yours. So I wouldn’t read too much into it unless you are very symptomatic. A GP will only refer if you are... and even then..

JennaShi profile image
JennaShi in reply to

Yeah I agree with that, I’ve heard thats the case as well as have been experiencing it myself. I’m still hopeful, I have alot of symptoms but alot of things also seem to overlap so I will see what they decide to do.

HughH profile image
HughH

If you have a family history of thyroid and autoimmune disease it could point to a genetic condition known as Impaired Sensitivity to Thyroid Hormone, sometimes called Thyroid Hormone Resistance. It causes hypothyroid symptoms and requires very high Free T3 levels (often above the top of the normal range) in the body to overcome the resistance.

It can also cause fibromyalgia, CFS, ME, Coeliac Disease, MS, Heart Disease and depression.

JennaShi profile image
JennaShi in reply to HughH

Thank you for your reply, I have no known family history of thyroid and or thyroid autoimmune issues. I believe mone went hypo because it has been over stimulated and attacked (TSI /TPO) for so long. Do you think this can happen due to having high levels of t3 for a long time? Will look into it.

HughH profile image
HughH in reply to JennaShi

There is a genetic factor in autoimmune disease and when 1 family member has an autoimmune condition other family members have a higher likelihood of getting an autoimmune condition, although not necessarily the same one. This genetic factor has not been identified.

I believe that the genetic factor is Impaired Sensitivity to Thyroid Hormone.

bookish profile image
bookish

Just a thought as you have other autoimmune conditions, mention Lupus and odd platelet counts, and that your Mum may have has MS - have you had all the APS tests? Antiphospholipid Syndrome (also Hughes' Syndrome Sticky Blood). Your anti-cardiolipin tests were indeterminate but need beta 2 glycoprotein and lupus anticoagulant testing too and can be positive for any one (or all 3) and can still have it and be negative on all 3. MS regularly misdiagnosed and actually APS. Maybe worth having a look at ghic.world/ for more info and symptoms list etc

JennaShi profile image
JennaShi in reply to bookish

Hi thank you for your reply, I was wondering about that on the test as well as My primary has mentioned that she thinks my platlets stick togwther, I can request it or maybe or it myself to find out. I do have reactivated EBV thats being treated so I wasnt sure if the virus was causing low platelets but it’s been going on for quite some time now and would like to figure out why. I dont believe I have had these tests, thank you will look into it for sure! I dont believe my mom would've known either so it would be interesting to see if there is a connection. She passed away but sometimes things are passed directly on to children.

000ggg profile image
000ggg in reply to JennaShi

I have strange things going on as well. With reactivated ebv in 2012-13. Now my latest rheumy test done due to joint pain and swollen elbow with mri joint effusion and sinovial thickening shows all autoimmunes he tested for neg but both thyroid antibodies are higher than my last test one month ago on my allergist tes. I have several auto i d including type1 D, hashis, raynauds, asthma and a family history of hashis, graves, and ra. I’m just reading that high thyroid antibodies can indicate ra, scleroderma and thyroid cancer as well as others. But since I have hashis and I’m medicated for it I assume it is partly that.

milkwoman profile image
milkwoman

Well, you have a positive ANA test with a 1:160 titer and a homogenous pattern. That points to lupus. You also have a high C3 (complement protein) and a borderline C4 (complement protein) which indicates inflammation in your body.

This should be enough to send you to a rheumatologist. You should push for it since you def have something going on that is autoimmune involved. Do your symptoms coincide with lupus? You don’t have to have the butterfly rash to have lupus. I’ve never had the rash but I tested positive for lupus (abd Sjogrens).

You might get better answers if you post on the lupus forum.

JennaShi profile image
JennaShi in reply to milkwoman

Thank you for your reply, Do you lnow why they tested for thyroid antibodies as well? I thought that thyroid antibodies do not attack the nucleus of the cells but tissue? Also this the first time I’ve ever had the ANA titre at 1:160, as it has been 1:80 sonce I believe it was last year (but still consistent) I agree and think there is something going on as well. I do have some symptoms such as fatigue, muscle pains and burning, joint pain, nodules (middle and knuckles closest to wrists, not all but some and seem to match other side). Brain fog, insomnia, hives, red rash on chest, back and shoulders, and horribly persistent itchy scalp, weakness among others, bit I also had to up my thyroid meds and have reactivated ebv as well as the rashes return often when I eat certain things and sometimes spreads to my arms and abdomen so I guess I am not sure. I hope to find out though and hope that they will call to schedule an appt. thank you for your encouragement, i appreciate it!

milkwoman profile image
milkwoman in reply to JennaShi

Who ran the tests? Your GP? It just looks like they tested for a slew of autoantibodies. Since you already have a thyroid disorder (I assume you are being treated for hypothyroidism?), it didn’t hurt to check to see if autoimmune related. Your test results are positive for autoimmune thyroiditis AKA Hashimotos.

Your list of symptoms are certainly in line with SLE (lupus). And with your titer increasing, it is progressing. You would probably be diagnosed with “mild SLE” and I would think, placed on Plaquenil (hydroxychloroquine).

You may have to be proactive at this point and REALLY push to see a rheumatologist ASAP. Neither SLE (nor Hashimotos) is to be taken lightly. I know when I had my positive ANA, my GP immediately referred me to a rheumatologist. At that appt, I had a full blood work up, urinalysis, and physical exam. It took 10 days to get my results back and I was diagnosed with SLE (I also have Sjogrens but that DX came a few months later. You can read all about this in my profile). Once diagnosed, I was sent to an ophthalmologist to get a baseline eye exam (different than what an eye doc does) before I could be cleared to start on Plaquenil. You could also be placed on different medications depending upon your particular symptoms.

Good luck! (And hugs 😊).

JennaShi profile image
JennaShi in reply to milkwoman

This was from the Rheumatologist that my Primary referred me too and all others (except for recent thyroid labs) have been from my primary. Yes I am being treated for Hypothyroidism and it is autoimmune related. I was diagnosed with Graves disease (autoimmune hyperthyroidism) a bit after the birth of my daughter 11 yrs ago and had the rai treatment 2010. It didnt work but my thyroid ended up burning out from over stimulization/attack and here we are and believe to now be on full replacement as of this month but still have high antibodies it seems. Thank you for sharing a oittle bit of your story, I will definitely check out your page. Were diagnosed with Hashimotos as well? Will do, I hope they call and schedule an appt.

milkwoman profile image
milkwoman in reply to JennaShi

Hoo boy, it does seem that you’ve been thru the ringer! Are you only on levothyroxine (T4)? If you truly do not have a functioning thyroid you might need a bit of T3.

I do not have Hashi’s DX, as I don’t have positive antibodies but my endo treats my HypoT as if I do have Hashi’s since I have autoimmunity involvement.

I’m confused - are you waiting on a follow up call/appt with your rheumatologist to go over results and start treatment? Is there a reason you can’t call them to schedule?

JennaShi profile image
JennaShi in reply to milkwoman

It seems we all have in our own way. I am currently on Armour 90 mg. It has a little t3 but I am unsure its enough for me and PA doesnt seem to want to add a synthetic t3 prescription to the mix so I will exploring my options if it doesnt get better in the next lab. Wow, you have a great doc! It could still be a possibility and agree with what you mentioned. Did he test for TPO as well? Glad you are in good hands.

JennaShi profile image
JennaShi in reply to JennaShi

Yes, waiting for them to call me back, i thought the receptionist said that they would perform this test before considering an appt. And I got results just yesterday so I will wait and see if they call me back.

Heloise profile image
Heloise

Hi jenna, since you have these autoimmune issues in your line there are now pcr tests that show what foods your system may react to. That causes inflammation and that seems to be the basis for most chronic diseases. Those triggers turn on the immune system. We know about gluten or nightshades but it can be most anything and if you avoid them you can also avoid the autoimmune condition. It's called a food sensitivity test rather than an allergy test.

JennaShi profile image
JennaShi in reply to Heloise

Thank you for your reply, I’m not sure that I’ve heard of the pcr tests bit have had a food sensitivity test and totally agree with you. Wpuld you say that food sensitivities cause rashes? And are perhaps different from rashes that you might get from lupus or orher autp immune such as dermatomyositis?

Heloise profile image
Heloise in reply to JennaShi

I was impressed with this herbalist while watching a series on autoimmunity.

I think her video is still playing if you care to watch. piriejonesgrossman.com/jane...

Heloise profile image
Heloise in reply to JennaShi

Oops, I should have said there are RNA tests that show sensitivities.

JennaShi profile image
JennaShi in reply to Heloise

I will look into these thank you, and the clip was great, thank you for sharing. We will be looking more into her website as well as the herb she mentioned Lomatiun, I’ve never heard of it but sounds hopeful.

Heloise profile image
Heloise in reply to JennaShi

Yes, many solutions which are kind of hidden from the public but the word is getting out. That herb seems to need some oversight. It was new to me as well.

JennaShi profile image
JennaShi in reply to Heloise

That is good that the word is getting out. I do agree with what she said, that many other countries use herbs and other natural remedies to aid on healing as well. Would be good to learn more for sure

Heloise profile image
Heloise in reply to JennaShi

Hi again Jenna, I see you are serious about this as we all should be. I don't know how familiar you are with functional medicine but I feel it is the ONLY way to deal with autoimmune conditions after researching for years. These doctors are getting together and offering their advice on summits. After each day with two or three interviews at the end you can select any interviews you missed. They offer to sell the whole series and I've bought a few and feel those were worth it but there is no need to do that.

So today only you can select any that you want to view and as many of them as you have time. I thought Catherine Schaffner offered some good information and was surprised about bioenergetics by another as I knew nothing about it. Anyway, if you don't have time for it, it's so last minute. I thought I would post it anyway.

piriejonesgrossman.com/repl...

JennaShi profile image
JennaShi in reply to Heloise

Thank you, I will look into this. I do currently see a functional medicine doctor but didnt not about the summits and will check it out. I agree, finctional medicine has alot to offer and we can definitely benefit from their help.

Heloise profile image
Heloise in reply to JennaShi

That's very good, Jenna. There are some big names in functional medicine now. Every so often they present a series like Tom O'Bryan's the Broken Brain, Izabelle Wentz', The Thyroid Secret, Interconnected and Awaken Your Brain have been really excellent. These are limited but sometimes are rerun or can be found on You Tube. They have been very educational but we know that SIBO and Lyme are also part of the chronic disease spectrum and Epstein Barre can be a terrible trigger.

I hope your functional doctor knows about these things; it is complicated.

Wishing you well.

Heloise profile image
Heloise

The rash is a giveaway that something is going on with your microbiome. We've come very far with autoimmune conditions. There are some great supplements that will aid in clearing it. But your conventional doctor will not be much help. Functional doctors know how to deal with autoimmune conditions. The cause is very similar so the treatment is as well. It really is all about the bacteria. The microbiome is your particular gut flora, viruses and antiobiotics often radically change it and also the foods we eat deliver certain bacteria.

I've watched many talks by these doctors and recently saw the results of a biome test. The host did the test and found out the great food he was eating like spinach and beets were kind of disastrous for him. I know it may sound simplistic but you can change your microbiome and finding which foods are going to offer the wrong bacteria makes all the difference. Millions of people have these conditions. There are too many toxins along with all the processing done to our food.

JennaShi profile image
JennaShi in reply to Heloise

That is really interesting, I dont think I have heard of the Biome test, and didnt realize that foods we are sensitive to cause the wrong bacteria to grow. That must’ve been eye opening for the both of you to see! I have been AIP for a long time but since thanksgiving its been hard to get back at it. It may also be hard when you have absorption issues, not sure how this relates with the microbiome (i dont truly understand it all and need to research more). But it must help feed bacteria viruses and infection. Will take a look the video thanks for sharing!

Heloise profile image
Heloise in reply to JennaShi

I hope you will do more research. You must have had some notion to go on the AIP diet. Knowing which sensitivities probably makes the difference. I just got a message from Dr. Mark Hyland who is now the director of the autoimmune department at the Cleveland Clinic in the U.S. He's definitely part of the heirarchy. His note also lists many interview and topics for free listening in itunes. I'm sure the microbiome will be mentioned. itunes.apple.com/us/podcast...

if the link works.

milkwoman profile image
milkwoman in reply to JennaShi

I agree that gut microbiome plays a huge part in how you feel. My endo is a functional medicine doctor and last Spring I did a slew of functional medicine tests that showed (amongst other things) that I had an imbalance of bad bacteria/good bacteria (bad was high, good was low). I had suspected for quite some time that I had poor absorption of nutrients. I also have a slight methylation problem. The info was overwhelming and it took time to find the right treatment for me. I tried several supplements that were ineffective and got very discouraged until recently.

I’m now on many supplements by Amy Myers that are actually doing something. The lacto kinds of probiotics did NOTHING so I tried her Primal Earth probiotic and within 2 days, the bloat was gone (with no side effects). I’ve added in her multivitamin, her Leaky Gut Revive, her Paleo Protein and her Collagen Protein. And just today I got in her supplements to strengthen my gut even more (Candifense, Caprylic Acid, and Coconut Charcoal). I only introduce one thing at a time to make sure there are no ill effects.

Her site is worth looking into (but be prepared to be overwhelmed). I have her books and it has taken me about 6-8 months to get to a point (now) where I feel I’m starting to understand things and learning what my body needs.

Heloise profile image
Heloise in reply to milkwoman

That is a wonderful testimonial. I receive emails from her and I see she is having a thyroid reset summit. thyroidresetsummit.com/?ide...

milkwoman profile image
milkwoman in reply to Heloise

That isn’t Amy Myers but Wendy Myers. But still looks interesting though!

This is Amy Myers:

amymyersmd.com/

Heloise profile image
Heloise in reply to milkwoman

LOL, they don't look anything alike either. Thanks for the correction. I'll check AMY.

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