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Avatar universal

SLE info

I was dx with SLE about 9 months ago.  I don't have a lot of symptoms besides the malar rash and photo sensitivity with a high ANA.  My rheumatologist usually takes months between appointments and she doesn't seem overly concerned, but I'm freaking out.  Well not really but I am concerned about my future.

Can anyone tell me what types of things I should expect and if there are any things that are more urgent that would require immediate attention?  I don't want to be overly anxious but feel a little in the dark.

xx Julie
9 Responses
1530171 tn?1448133193
Hi JulesKM.

I'm sorry about SLE diagnosis, but there's good news.
You're mainly unsymptomatic, which is an indication, there's little
organ/system involvement at the present time.

Before I get carried away with a lengthy reply, I will answer your questions from your earlier post by including an excerpt from one of my recent replies to another member (saves me some time).

  "...This has to do with methylation processes as I mentioned before-a bit too technical to get into right now in detail, but basically the result is that when you have a mutation of the MTHFR gene, the corresponding MTHFR enzyme  works at a much lower rate and one of the many issues that result from this,  possibly pertinent to you, in relation to your sinus issues, is that histamine produced in your body does not get broken down.
And this is just of many consequences and if left untreated, serious diseases like MS or cancer can develop.
There are many possible mutations but you need to be tested mainly for
677 and 1298 , so you need to hook up with a knowledgeable geneticist
who can also treat you.
There has been considerable research that shows one or more MTHFR mutations may play a role in cancer, stroke, heart problems, congenital defects, depression, IBS , miscarriages, migraines, chemical sensitivities, schizophrenia-like syndromes, bipolar disorder, Parkinson’s disease, Alzheimer’s disease and more.

MTHFR Gene  testing. One of the least expensive places for this is
23andMe, which will send you back "raw data" which needs interpretation.
No problem. If you decide for that , let me know and I can give you a couple links where you can upload the data and get the answers for free .

The good news is that it is treatable (to a great extend)
Should you have one of this gene's 40-50 mutations (it is actually quite common), please let us know which one..."

So yes, it is a probable direct causative co- factor in allergies , if you have a MTHFR  mutation and no, it would not be an A/I mimicker, it would be a causative co-factor in their development.
I do not believe in single causes in disease development, but this does not extend to triggers, which act as the catalysts.

Thank goodness for copy and paste! lol!
From another reply I posted a while back,  possibly pertinent to your dx and prognosis:

"While I'm here, something I forgot to mention, is that when I had been checking out Dr.Barnes work, one particular finding stayed with me.
From ALL the thousands of patients he treated for hypothyroid
(using natural desiccated thyroid ) NONE of these patients developed Lupus.
The ones who had been already diagnosed with Lupus,
NONE developed any new signs of organ involvement, while being treated by Dr. Barnes for hypothyroid. "

"As far as serum testing goes, the most indicative & accurate for cellular thyroid function are: Free T3 (fT3), Free T4 (fT4) AND Reverse T3 (rT3)
All 3 are needed!
  fT3/rT3 ratio is probably the most reliable marker for low cellular thyroid function.

To my opinion though we cannot find a better method to test than Dr. Barnes Basal Temperature Test. (there are several versions now)
I have devoted countless of hours, scanning through the studies and groundbreaking work of Dr. Barnes, The Father of Hypothyroidism, lol!
  Simply brilliant and way ahead of his time!

Instructions For Taking Basal Body Temperature:
Use an ordinary oral or rectal glass (not digital) thermometer.
Shake down the thermometer the night before, and place it on your nightstand.
The first thing in the morning BEFORE you get out of bed, place the thermometer under your arm for ten(10) minutes.
Record the temperature reading and date right away!
Repeat for 10 days.
Normal Range: 97.6 to 98.2
Averages below this range indicate hypothyroidism.

Note that in the presence of any infectious conditions, (I remember you had  a question in the past regarding infections & fever when someone's temp. is normally lower than 97.6)  these results may be inaccurate and this could be a problem with chronic low grade infections accompanied by low grade fevers, for the purposes of the temperature testing.

You may want to check it out online also, in case I missed any details.

Now did your Rheumie, dx you according to the 4 out of 11 diagnostic criteria? Just curious.

Things you can do on your own:
--- Lifestyle choice modifications and improvements. Optimize diet-low carb,
with emphasis on fresh organic vegetables, pastured meat, low merc. fish,
free range eggs and poultry, healthy fats like extra virgin coconut and olive oil, omega-3 etc. No junk foods, no chemicals , no artificial ingredients, no added sugars, no multi-ingredient packaged foods.
Get some physical activity every day day
-Try going gluten-free (gluten has been implicated in so many A/I diseases). Note: Gluten is often a hidden ingredient in many products, including cosmetics, shampoos, playdough, sauces, salad dressings, sauces, soups, often under different names. Just do a search for a complete list.
-If you feel really proactive, start by looking at Cyrex Labs website, no correction, go to Cyrex Labs for Professionals (search under: Cyrex Advanced Clinical Laboratory Testing and it will be the first result from your search).
They seem to be at the forefront of research in regards to testing, detecting
& monitoring autoimmune reactivities and their possible triggers.
-- Totally rule out (see the aforementioned proper tests) or properly regulate low thyroid function(even sub-clinical)
My suggestion--> Find doctors who treat according to Dr. Barnes methods
or holistic doctors who prescribe natural desiccated thyroid-not synthetic-

--If you have not done any tests for deficiencies, in addition to thyroid testing, you may ask your PCP for:
D3, B12, Folate, including a separate homocysteine test for neurological B12 and folate levels (this will indicate if you have undermethylation issues), iron status, magnesium tissue levels-not serum!

Hope this helps. You  can contact me anytime,
so please do not hesitate to do so, when the need arises.

Please note that my suggestions and comments are not intended as a replacement for medical advice.

Best wishes.

Avatar universal
Thank you.  The MTHFR is interesting since I have allergies.  So if that's the case, your saying it would be more likely to have harmed my immune system and then allowed SLE in? Not that the mutation caused a high ANA.

My doctor checked my TPO antibodies and they were negative so thyroid was ruled out as a cause of the high ANA.

I've only seen my doctor once since the dx and I wasn't fully aware of the criteria.  She just asked a lot of questions. Joint pain and fatigue were my main symptoms along with the high ANA. I don't know if there was other irregular blood work but I don't think so.

I guess I need to ask more questions.

xx Jules
1530171 tn?1448133193
In inactive phases of autoimmunity a single Anti-TPO test might show negative, rendering your doctors conclusion, "inconclusive".
Just my opinion.

Grains/carbs/gluten intolerance.
Look into Gliadin test (urine), by Cyrex labs. They test 12 forms-not just the alpha ordered by most doctors- of gliadins regarding gluten intolerance (not necessarily digestive).
Now they can also test which part of the body is affected!
Most hypothyroid sufferers have gluten intolerance and don't even know it!
The gluten molecules-mainly from gmo grains- resemble the TPO(Thyroid Peroxidase - an enzyme necessary for the signalling Thyroid hormone production) molecules and thus the immune system in its response against gluten, attacks the TPO in the Thyroid also!

The MTHFR gene mutation is often the missing piece of the puzzle in serious chronic disease development and consequently its treatment, affecting a very large percentage of the population in various degrees.
Yes, it could interfere seriously with the immune system, as it impairs methylation which has to do with billions of biochemical processes in your cells every second! Not a typo,lol!

Wishing you well.
Avatar universal
I guess I need to really study up.  It is a lot of information to process especially when you're exhausted.

Question. If I got the flu a day or two after the ANA, could that have caused the high level?

Also is there anything else that could cause a high ANA?  How would they be ruled in or out?  Would my doctor check for them routinely or would I have to ask for them?
1530171 tn?1448133193
Your Lupus dx and high ANA confirm the presence of autoimmune antibodies
however, please consider yourself fortunate that you're mainly unsymptomatic.
It is just one marker/finding which is used mainly with other tests, clinical examination and medical history for diagnostic purposes.

Your immune system is hard at work -obviously- and the only thing you can do is support it the best way you can.

If I were you, I'd consider the information in my previous replies seriously and hook up with a holistic/functional medicine/naturopathic doctor to help you follow through. Most of what I "preach" is beyond the scope of practice of most conventional medical doctors.

Avatar universal
Hi again.  So I've done my bbt for 2+ weeks and it averages right around 97.2 but going as low as 96.8 but never over 97.6.  My period has become irregular so I had to wait to get to the starting point.

My GP tested thyroid levels as another possibility for elevated ANA absent any (or at least just a few) other findings.  The antibodies were negative again (TPO and TgAb).

TSH 1.61 miU/L.         0.4-4.5 miU/L
Free T3 2.7 pg/mL.     2.3-4.2 pg/mL
Free T4 1.1 ng/dL.      0.8-1.8 ng/dL

Waiting on reverse T3 in the next couple of days.

So far except for the high ANA, everything looks normal.
1530171 tn?1448133193
Hi Jules.

I'm glad your labs are still showing good, albeit on the low end of the normal range  for FT3, which is the most concerning at this point.

You have to understand that the so-called normal  lab ranges have been based on statistical models and do not reflect nessecarily individual disease states, 100% accurately. What is a subclinical level or low normal range for a person with total absence of disease and symptoms, may be the total opposite for someone else, experiencing full blown symptoms of the condition.
You are somewhere in the middle of these two, I suspect, showing only some early mild symptoms.

Your  bbt self-testing is definitely indicating at least moderate hypothyroidism, which if remains unregulated, over time many bodily processes may suffer from less than optimal thyroid function.
Metabolism, temp.regulation, cell maintenance, repair and healing
processes,  are to a large degree thyroid dependant.

Let me know your rT3 level when it comes in, but not much will change because of this, unless you deal with a holistic minded medical practitioner who treats patients according to the former and more effective (to my opinion) protocols, as I already mentioned in one of my previous replies.

Best wishes.
Avatar universal
Hi. So got my rT3 at 17 ng/dL.  With my fT3 at 2.7 pg/mL, I calculate the ratio at 15.9.

I read it should be over 20 on a thyroid site but I don't know how accurate it is.  My doc says it's normal.

Let me know what you think.  Is my doc correct or do I need a new one?


1530171 tn?1448133193
Hey Jules.
I'd try a doctor who treats according to Dr. Broda Barnes methods.
Your ratio is low enough to justify not staying with your current doctor, as I mentioned in my previous reply.
Ideally, you'll hook up with one who is willing to work with AND for you!
You may try: "Locate ABIHM Certified Integrative Holistic Physicians"
google search, first result.
Also try Broda Barnes website.

All the best and let me know how it goes.
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