I'm so beyond frustrated and i need help from people who might know what my tests are indicating.
Last may i was living in Chicago and came with my fiancee to visit his parents in Puerto Rico. Since i was in Chicago i was not getting much sun. I came outside in the morning and began to lay out in the sun.. after 15 mins i started feeling very dizzy and uncomfortable. I started feeling excessively hot and flustered... I came inside to the breakfast table and i looked down at my arms and i was covered in red blotches. I started feeling dizzy and then saw spots and blacked out. It was the first( and last) time in my life that i fainted. Later that day I felt better but still a little strange.
i never felt right after that but i didn't think much of it. After the end of the summer we were moving out of Chicago to Puerto Rico to take a job here...... this is when my problems became more noticeable to me. I started feeling very bad. I had excess fatigue and found it very hard to wake up in the morning, I would wake up disoriented and exhausted. It progressed to dull daily headaches. I toughed it out july 2008- october 2008 when i finally went to a Doctor because i was feeling overly fatigued and lightheaded daily. since my brother was diagnosed with a thyroid problem... that is what i was thinking it was. Sure enough my thyroid hormones were a little off. The doctor also tested Microsomal antibodies which were high, as well as my ANA which was positive at 1:320 speckled. This led to her Dx of Hashimoto's Thyroiditis. She put me on a small dose of medicine for the thyroid and said everything was due to that. Months past with no improvement. dose was double about 2 months ago and still no improvement, the chronic headaches and malaise persisted. I have a general feeling of being hungover with out drinking a sip of alcohol.
I've also been losing weight. Lost 15 lbs in a year (from 118- 103 lbs at 5'5" ) and have not changed my eating habits and am exercising less since i feel bad, also hair is falling out in clumps.
Had a whole new blood panel and got my results today. my neck and wrists hurt on and off but no other join pain.... Can i have lupus with out having joint pain????
white blood count-------- 4.10 (4.00-10.00)
red blood count----------- 4.50 (4.20-5.40)
sed rate--------- 2.00 (mm/hr)
Liver Panel: Normal
ANA positive 1:320 Speckled (was the same both times the test was taken)
This time my thyroid blood work came back more then fine, if anything it looks over medicated/ hyperthyroid, so I should not be feeling tired and sick due to that...
I know that not all of my tests are positive and initially I wasn't thinking it was lupus, but i'm at a loss here!!!! My Dr. wants me to see an endo since she still thinks it's thyroid related, but i believe I need to see a rheumy. Any advice or input is helpful thanks!
Keep in mind that autoimmune diseases are difficult to dx and drs. really like to be absolutely possitive when giving a dx.
Speckled pattern can indicate Sjogren's Syndrome (95%), SLE (40%), and or Scleroderma (5%).
Do you have dry eyes? The rhematologist could test you for this.
In order to get a dx of lupus youmust have at least 4 of the 11 criteria. You could google the internet to get a list of these. Most people with lupus (SLE), have joint pain and skin involvement.
I don't know much about someone being allergic to the sun, but that might be what is happening along with maybe something else. Have they checked you for fibromyalgia? This seems unlikely since you only seem tohave problems in sunny Puerto Rico, as well as the thyroid.
You're thinking...and that's good. I talked things out with my doctor and we put our heads together and figured things out. Some people take as many as 10 years to get a dx. Prayerfully you won't have to suffer that long. But keep in mind that lupus is a progressive disease. I didn't have joint swelling at first, but it took over a year of feeling really bad before some of the criteria showed up. Like the mouth sores came later along with the joint swelling. They HURT for a long time before they began to swell.
If they repeat the ANA, spend time in the sun before tey test. If you do have lupus, it will cause the ANA to jump up really high. If you don't have lupus, it won't affect the lab results. When my ANA was 360, nothing was done....not even whn it was 640. But when it jumped to 2,560...everyone paid attention.
Thanks so much for your response. I wish i only felt bad when i was in Puerto Rico. This is where I felt it the first time. Maybe it was also because i was working a very stressful job as a banker in Chicago and working 14+ hour days. so though I felt bad in Chicago i thought it was because i was overworked. Now that I am in Puerto Rico I don't work, so i realized exactly how badly i felt when i still did not have energy to do anything for no real reason.
I grew up in New Mexico where it is more sunny then PR, and lived in Australia for a while where it is also ridiculously bright and sunny, but i did not have symptoms of anything until my mid 20's. I've been back in Chicago and other places for weeks to visit and I still feel bad, it's not just when i am in the sun but all the time, just that my skin gets blotchy now in the sun.
I'm in bed right now it is almost 1:30 pm here and I still can't seem to get up... my muscles are tired and my body is weak. I slept from 12 last night to 12:30 today.
I do not think I have dry eyes or dry mouth.... So i never thought of it being sjogrens. Sometimes i wonder what it could be, i know that symptoms of these diseases manifest in different ways. And also maybe it's the beginning stages of whatever I have and that more symptoms will pop up over time. I've only been sick for a year (that sounds so horrible but when dealing with chronic illness this thing could be in it's infancy.)
I cannot believe your ANA went to 2,560!!! i've never heard of it that high before. In fact I thought it only went to 640!
I would like to repeat some of my tests. i have good days and bad days and I happened to go get my blood tested on a good day when i felt more or less okay. I would like to go in when i feel really bad just to see if it makes a difference. And I've avoided the sun for a year, so I could try sunbathing and see what happens. I get my scleroderma results in this afternoon as they were the only blood test that was not ready yet when i went to pick it up. (I strongly feel it will be negative.)
I've made an appointment with my internist so i can get a referral to a good Rheumy and will update you on what he/she says!
Thanks again for your help I really do appreciate it.....
I got squeezed in to see a really good Rheumy here in PR yesterday. I waited for hours but it was worth it. During the exam he noticed my skin is "mottled". He doesn't think I have lupus because I only have 3 of the 11 symptoms. He ordered up a whole bundle of tests for me including lupus anticoagulants, anti mitochondiral antibodies, Anti-smooth muscle and a whole lot more.
Two days ago I spent some time in the sun, yesterday I felt okay, today i feel HORRIBLE. I could vomit, and my head hurts very badly. not sure if there is a correlation.
Anyways, whatever I have is not lupus (at least not yet), but something really nasty and auto-immune related..... so i will keep everyone updated! :)
Quick question.... If you have lupus, does catching some sun only make the ANA higher.... or does does it cause a greater chance of positives in other tests as well?
As far as I know, the sun exposure only affects the ANA if you have lupus. I know some people are allergic to the sun (I'm not familiar with that).
The ANA titers go like this:
Each time they wash it in the lab and still see antibodies, they double the titer.
With a Speckled pattern it is unlikely that you have scleraderma and MORE likely that you have either sjorgren's or Lupus (SLE).
As far as how well you feel. The day my ANA was 2,560, I was having a pretty good day and the day it was negetive, I felt like death warmed over.
When I was really sick, I never knew what triggered all of it. I was sick if I was in the sun and I was sick if I stayed inside, sick if I did some house work, etc. I never could figure out a pattern. But now that I'm on medication, I can pin point exactly what I am doing wrong.
Jen, I can't tell you what a difference this Plaquinel has made in my quality of life. I still have tired days, but they are few between. I certainly don't feel like jumping around or cutting fire wood, but I can keep up with things now. During the year and a half that I was really sick, I never thought my life would ever be normal again. I really thought I would be bed ridden for the rest of my life.
Nausea is definitely a symptom, so is diarrhea. Those headaches that are assoiciated w/ lupus are horrible!!!!
Follow-up test for a speckled pattern are:
Smith - dx of SLE
RNP - dx of Mixed Connectiv Tissue & SLE
SS-A (Ro) - dx of Sjogren's & SLE
ss-B (La) - dx of Sjogren's
Has your dr. done any of these test.
I got to where I had the person at the desk (@dr.s office) make a copy of the lab request. That way I could look them up on the internet and be ready to shoot out any questions I might have. I also requested the lab report prior to my next dr. visit. Trust me, I had my questions all written down because my lightnin quick mind was gone in a flash.
Luckily here in PR the Doctor hands you the lab request and you take it to the lab yourself and so i'm sitting here holding my lab request! Unfortunately, my Doctors handwriting is SO miserable that i cannot read half of the tests he ordered. He likes to use a specific lab so i guess they are used to his chicken scratches.
He is repeating a lot of the tests that i had done earlier this month. Such as CRP, CMP, Sed Rate. I can see he wants AMA, ASMA, Lupus Anticoagulant, Serum Thyroglobulin (or maybe it says immunoglobulin?) , anti cardiolipin (i think!) one of them he just wrote a number for: 8623576, PHOS, CPD?, TSI(?), The questionmarks are there because that is what i think it says but i'm not sure and there are a few more i can't even begin to make out. I wish i could scan it to show you.
So I can't go and get my blood work done yet because my health insurance has stopped paying for me due to a "pre existing condition" and they need proof from my old health insurance company that they never treated me for anything. So now i'm waiting on the beaurocracy. Hopefully it will be cleared up by tomorrow. Been inside all weekend and feeling terrible. When I go to the lab to get it done they give me a printed receipt with the lab names on it, so i can look everything before I get my results. And then I get to pick up my results before my appointment so I can also study them before I see my Doctor again....
The 3 areas I fall into are Positive ANA, Blood abnormalities: low white and red blood cells,low functioning immune system and increased autoimmunity (Even the Mircosomal antibodies count apparently though i thought they were thyroid related), + photo sensitivity. He says with out the join pain it's not that likely that it's lupus......
oh side note, some of his reasoning were behind blood tests taken in October which showed very low red and white cells and very low c3/c4. The blood results i posted above were from beginning of July. This is why he wants to repeat most of my blood work again.....
Ha Ha, I think most doctors take at least a semister on chicken scratch.
The low C3 and C4 are indicators in lupus patients that it is affecting the kidney. I'm surprised they have not kept a closer eye on you. I'm not sure what else could cause this.
Here are some articles that say 80-90% of lupus patients complain of joint pain. I do think joint pain is the most common complaint along with skin rashes. But do some research on wheher EVERYONE with lupus has joint pain.
11 criteria for lupus:
1) butterfly rash
2) discoid rash
3) sun sensitivity
4) oral or nose ulcers
6) serositis (inflamation of the lining of the lung)
pericardium (inflamation of the lining around the heart)
7) kidney disorder ( protein in urine or abnormal sediment in urine)
8) neurologic disorder (seizure or psychosis with no other explanation)
9) Blood abnormalities (low WBC, low platelet, anemia)
10) immunologic disorder (blood testing indicating either antiphospholipid antibodies, lupus anticoagulant, anti-DNA, false syphilis test, or a positive anti-SM)
11) positive ANA
*most people with lupus have a pos ANA, but not everyone (at first)
This information is copied from "The Lupus Book" by Daniel Wallace, M.D.
I'm not sure what the # was, but I think the TSI was TSH (thyroid function test)
It would be wonderful if you do not have lupus and it's something simple. Some people have an elevated ANA (in low titers). And 360 is considered low.
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