lupas, arthritis, auto immune?!

[Leona7506]

Hi there,
I will make this as simple and short as possible....
1999 I had a positive ANA at 1:80 speckled and a positive anti DNA of 3.7 (anything over 3.5 was highly indicative of SLE)
normal c3 c4
neg sed rate & negative RFactor, normal CRP
I have pernicious anemia

in 2005 was dx with hashimotos

fast forward to today 2013
positive ANA 1:320 speckled
NEGATIVE anti DNA
C3 normal
C4 elevated at 0.59 range is 0.10-0.50
CK muscle elevated at 270 normal is <200
NEGATIVE extractable nuclear antibodies
TSH LOW at 0.26  range is 0.27-4.2 while on 175 mg of synthroid and 25mg of cytomel
LOW vitamin D at 60 range is 75-150
MCV 81  range 82-98
MCH 26.7  range 27.5-33.5
RDW 15.3%  range 11.5-14.5

all other labs normal

symptoms are fatigue, hair loss, stiff joints, mood swings, irregular menstruation....

My GP feels my CK muscle is high as I am in training for a half marathon and doing intense boot camps 3x pre week.

My question is this, Lupus dx??
and why would my anti DNA be soooo positive 15 yrs ago and negative today??

thanks soooo much in advance :-)

[Red_Star]

The US is the only country to use conventional units. The rest of the world uses International Standard (SI) units. I added the US measurement in brackets.

Optimal vitamin D is a minimum of 125 nmol/L (50 ng/mL) as everyone is able to store vitamin D at this range.

Vitamin B12 should be over 400 pmol/L (550 pg/mL). This is the highest serum level that have been associated with deficient CSF (cerebrospinal fluid) B12 levels and psychiatric syndromes.

Low MCV and low MCH is typically due to iron deficiency.  I take sublingual B12 daily for my autoimmune pernicious anaemia. I suffered allergic reactions from B12 injections so i'm happy sublingual B12 works. :)

[Barb135]

I hadn't looked at your profile, so hadn't noticed that you're in Canada.   Yes, that could be why the lab ranges are so different, but Japan, for instance, has 500 for their very bottom of the range, so you can see that both the U.S. and Canada are probably missing a lot of diagnosis.

I sometimes forget my B12 shot, as well, but it only takes a day or so before I'm reminded, because I get so horribly tired, my feet start burning/tingling, etc, much worse than normal.  I also bruise much easier when my B12 levels drop too low.

Being in Canada is probably why your FT3 isn't being tested, as well, since we've had some members who were not allowed to get that because of the Health Care System.  Some Canadian members have been able to get the FT3, while others have not.

Many doctors believe that testing FT3 is not necessary for those of us who are hypo, but they monitor it religiously for hyper.  I do hope your daughter is getting FREE T3 and FREE T4, not just T3 and T4, which indicates Total and are considered obsolete... That's why we always specify "free"...

Can you ask your doctor for another set of thyroid tests, to include FT3?  FT4 and FT4 need to be done from the same blood draw.  I don't even look at TSH, because it's not usual for it to be suppressed when one is on thyroid medication; particularly, one with a T3 component.

[Leona7506]

Hi Barb,

I do have pernicious anemia and I do get injections....all be it, I do sometimes forget.
I wonder if my lab ranges are different because I am in Canada?

I also wondered about my free T3 not being tested.
My daughter has Graves disease and they ALWAYS test tsh t3 and t4.

Yes, I believe I had a positive TPOab done after I had my son about 4 yrs ago.....

I can not thank you enough for discussing with me, it is wonderful to chat with someone who understands :-)

[Barb135]

The biggest thing that jumps out at me, is your B12 --- your lab is using a very odd range and even though your level is "in range", it's way too low.  For example, the range many labs use is 200-1100... I have Pernicious Anemia and I have to keep my level right at/above that 1100 mark. B12 deficiency can be caused by not eating enough B12 rich foods or because of malabsorption; meat, dairy and eggs are major sources.   Are you supplementing B12, at all?  You could try a sublingual or liquid, and retest after a couple months to see if your levels are coming up; if not, you may have to inject.

Are you supplementing the vitamin D?  Deficiency can cause hypo like symptoms.

I don't see anything out of the ordinary with your thyroid tests.  Your FT4 is very close to the recommended mid range and without an FT3, we really can't tell much.  As I noted above, TSH, typically, becomes irrelevant when one is on thyroid replacement hormones, particularly, one with a T3 component.

I do have a quarrel with your doctor for prescribing you a T3 med, and not monitoring your FT3 levels... That's bordering on malpractice.

There are 2 antibodies that can be used to diagnose Hashimoto's; those are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAB).  

[Leona7506]

Hi Barb,
Thanks so much for  your reply and info.
Hashimotos was dx with antibody testing but for the life of me I can not remember that nor do I have the copies. I reckon it was Thyoid peroxidase (sp?)

Here is the  other test info,


TSH       0.26   rr  0.27-4.2 mU/L

T4 Free  15.1  rr  10.5-20.0 pmol/L

Vitamin B12    238  rr  150-650  pmol/L

25-Hydroxyvitamin D    60 rr 75-150  nmol/L

This is the test of choice to assess
Vitamin D status when indicated. Testing
asymptomatic patients at low risk of
deficiency is not usually required in
view of the safety and low cost of
supplementation.
200: toxic

[Barb135]

I'm not familiar with a lot of the tests you mentioned because we mostly deal with thyroid tests, not DNA, ANA, etc...

From what I've learned from tests I've had, myself, that positive ANA is possible with many/most other autoimmune diseases; I believe the anti-DNA can also be present with other autoimmunes, such as RA, PA, MS, Hashimoto's, etc.

What tests were done to diagnose the Hashimoto's.  It's very possible that the Hashimoto's was the cause of the positive ANA.

It's not unusual for TSH to be suppressed when on a thyroid replacement hormone, particularly one with a T3 component, such as cytomel - you're on a pretty hefty dose, at that.  Do you have FT3 and FT4 tests to go along with the TSH?  If so, please post them, with reference ranges.  Your symptoms are indicative of inadequate thyroid hormones, even if FT3 and FT4 are "in range".

Your RDW is quite elevated and indicates that you might have a vitamin B12 deficiency (Pernicious Anemia); have you had vitamin B12 tested?  Vitamin B12 deficiency can cause the most debilitating fatigue you'd ever imagine.

Odd range for vitamin D... I'm sure you typed it right, but can you please verify it.