[mady]

Hi everybody!
I'm coming here to ask a question and tell my story because there may be someone that could help me.
On May 2007 I picked up some copies of my blood test from my primary doctor's office, and my platelets were 135.
Out of curiosity called and asked for an appointment with an oncologist/hematologist. I was asymptomatic for thrombocytopenia. The day the specialist made my blood test on August 2007 my platelets were down to 60.I tested negative for everything he did on me and he was extensive in testing all kinds of Hepatities, liver, kidney, nothing .I just tested positive for a deficiency in IgA.He is a researched, very prestigious Dr. He looked at me and told me that he didn't had an explanation and sent me back home.
I went without insurance for one year and now again I went back to another doctor after having insurance again. This doctor is a specialist and orders the platelets test plus an ANA. Here is when my agony starts. It reads like this.
anachoice TM-Postitive;ANA pattern -speckled,and antinuclear antibodies 1:1280.y platelets are now 90.He sent me to a rheuma specialist. The appointment is for Octuber.Looking for info I went to see my primary doctor and he tested me for scleroderma.
How bad is this? Can all these test be wrong?
I forgot to mention that they did a sonogram, and my spleen is normal. Otherwise I'm asymptomatic ,good liver, kidneys, feel great.
Please what this may mean?

Thanks


Mady

 

[Maia]

It does seem like some sort of autoimmune disease is possible, which one is a matter of debate until you see the rheumy. A very high ANA is usually a true positive, and you have had low platelets for quite some time now so this is not one of those strange "one-off" things that can happen from time to time.

We have had several members here who only had ITP (low platelets due to no known cause) for quite a while before they developed lupus. Without a doubt, there are many more people who have ITP but then never go on to develop another autoimmune condition.

The good news is that you are feeling quite well, and have no symptoms, so it's possible that you will not need much more than more frequent monitoring of your platelet count. Treatment is usually reserved for very low drop in platelet counts.

Here's a site with some interesting information and statistics on your condition:

http://en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura

 

[mady]

Thanks for replying.It's hard to digest that out of the blue this is a new reality for me.I'm going to my next appoinment with the rheumy and do you think I need further testing.I know they are fairly well training doctors ,but I've been with this for a while and nobody noticed.I'll keep on reading the postings and hope to learn more about this.

Mady

 

[SoCalEric]

Hi Mady,

Are you having a lot of bruising? Your #s seem VERY low and I know when mine were down that far I'd get a little bruise that would turn into a HUGE bruise. I'm one of those people that was diagnosed with ITP years before my Lupus diagnosis. I was sent to a hemotologist. He had my bone marrow checked to see if I was producing platlets. I was, so it was assumed my spleen was filtering them out. I was put on 100mg of prednisone which got my platelets up to normal. If that didn't work my spleen was going to be removed.
I know if it wasn't for the bruises I'd have never noticed the platlet problem, I felt perfectly fine.

Best Wishes,
Eric

 

[mady]

Thanks Eric.
The problem was that the ANA went back positive and the onco/hematologist doctor sent me to the rheuma specialist.I wish it were like that for me,but for the results of the ultrasound my spleen is not enlarged.Is there any other test to be done ?Even in that case the ANA still is a concern.No symptoms at all of a bleeding disorder,no bruising,bleedings anything.They also tested the coagulation cascade and all factors work properly.
Thanks


Mady

 

[Clare.T]

Hello Mady and welcome to the forum

With an ANA that high, even if only once, further specific tests should be done for other auto antibodies that could indicate the possibility of lupus if not present actuality. Blood tests can be positive without signs of disease but it is the symptoms that enable the diagnosis and suitable treatment. Positive blood tests without the symptoms and signs of disease are not treated.

IgA deficency can be associated with lupus and similar connective tissue diseases. Google it.

It's good that your platelet levels have increased. A high positive ANA and thrombocytopenia even symptomless would count as criteria towards a lupus diagnosis but only if there are other significant criteria such as joint aches and pains, skin problems either specific or often associated with connective tissue disease, protein in urine, non specific symptoms such as fatigue and hair loss.
ANA is highly significant for a lupus diagnosis, especially at high levels but it is not specific to SLE. I have read that if 95% of thse with lupus have a positive ANA 95% of those with a positive ANA do not have lupus Other diseases mentioned are diabetes, other autoimmune connective tissue diseases, thryoid, liver disease, infectious diseases both viral or bacterial. I haven't noticed cancer mentioned before, but why focus on that.

Diagnosis has to be made by an experienced physician who will carefully assess all the possible indications.

I can't imagine why a doctor would decide that scleroderma is a possibility if all you have is thrombocytopenia and an ANA. It is a very rare disease. It would be interesting to know what tests he did.

You are doing well to inform yourself and in taking a proactive role in getting the best assessment possible.

Good luck
Clare

 

[mady]

Clare thanks so much.
I'm still in shock for the diagnose.I will post the name of the tests as soon I call for the results. I'm very concerned for this ambiguity.I'm very exciting about the book .

 

[cad]

Hi and Welcome,
sorry that i can't really help with the relevance of the platelets.

Was the hepatitis autoimmune?
So sorry you are feeling so awful, you have come to the right place though for support and advice.
I realy hope things start to get better for you soon.

Take Care

Good Luck

Cassie

 

[mady]

Thanks Cassie for your support,the problem is not that I have hep ,is that I do not generate antibodies when I get vaccinated.They tested and all are negatives.Not only to that but to any vaccination including MME,etc..
I can't stop thinking about my appoinment.

 

[Clare.T]

Hello Mady
Sorry I don't understand what you have been diagnosed with. I thought you said you have no symptoms of any disease and no abnormal blood work apart from low platelets and high ANA.
Why see a dermatologist if there's nothing wrong with your skin?
I must have missed something.
Anyway I read an interesting article about IgA deficiency and autoimmune disease, although I expect you know all about it already

http://www.info4pi.org/patienttopatient/index.cfm?section=patienttopatient&content=syndromes&area=2

Some abnormal blood work does need treating - very low platelets or anemia for example but the mere presence of autoantibodies isn't treatable and wouldn't alone lead to diagnosis.

Getting diagnosed with SLE has serious implications for insurance. I can see that you are anxious about your situation and maybe there are clear signs that an autoimmune disease is brewing. Obviously you'd like a better understanding of your situation but maybe nobody can forecast anything at this point.

Good luck
Clare

 

[mady]

I really appreciate the support of this group. I’m learning a lot and admire the courage of many here that have gone through so many difficult experiences.
It's like you say Clare, I’ve been studied for low platelets. I have a basic understanding of the immune system, but when you go to the details of it, it is taking me some time to understand what is going on with my inmunosystem.
The IgA deficiency has never been of the interest of any doctor. It’s like it does not exist. I'll read the link you sent me about it.
The second oncologist is the one that ordered the ANA and it came back positive. To him, this is some kind of disorder that needs to be studied by a rheumathologist.At this point I'm waiting for an appointment with one, and I don't even know if he is knowledgeable about lupus.
My anxiety, I think is because I need to get to the bottom of this. This may affect my daughters and changes everything I have been planning. It’s just pooped out of the blue, just for my curiosity of asking for a second blood test that day. I’m not familiarized in deep about the lab tests and I read on the book about lupus that a skin biopsy named lupus band test can detect lupus even in asymptomatic patients. I need a referral for my rheumy, but I don't need one for a derm. That’s the reason I wanted to go to one .About insurance, I live one day at the time and now all I need is to know.
Thanks so much


Mady

 

[Clare.T]

Hello again Mady

Most of us find the immune system incomprehensible after the first few words if you mean studying and understanding everything about it and of course there are still huge areas that very little is known about.
Huge strides are being made in understandings and realisations that will hopefully lead to better medications & much better diagnostic tests. Maybe even being able to predict who will definitely develop autoimmune diseases and changing their immune system to avoid disease.

But the main thing is to know what one needs to know to get diagnosis and to get the best treatment from the best doctors one can access.

Mostly people go to a doctor because they are feeling unwell. There are a very few circumstances such as going into the armed forces when everybody gets a full check up and health records are kept over a number of years. Such a study was done in the US forces. It was found that a proportion of those who had abnormal bloodwork such as ANA antibodies and anti ds DNA antibodies did in fact go on the develop lupus.

Some babies are born with a condition called neonatal lupus which occcurs when antibodies called anti- Ro cross the placenta. The mothers might be perfectly well but some do go on to develop lupus or an associated autoimmune disease called Sjogren's. Not all mothers with anti Ro antibodies have children with neonatal lupus. Nobody knows why it happens to some and not others.
Nobody knows yet how many anti Ro mothers never develop autoimmune disease because they haven't usually been followed up for long enough, if ever. Nobody knows how many people are walking round perfectly well despite having significant antibody levels.

Certain genetic types are associated with certain diseases but not everybody with these genetic markers goes on to develop one of the diseases the markers are often associated with. Another mystery.

About the ANA, it has been said that over 95% of those with lupus have ANA antibodies but 95% with ANA antibodies do not have lupus.
Some blood abnormalities do constitute diseases in themselves and need treatment but that is not the case with ANA antibodies or even the more specific lupus autoantibodies.
Not to mention the other side of it, those people who have all the symptoms and signs of lupus but no bloodwork to support a diagnosis.

skin biopsy named lupus band test can detect lupus even in asymptomatic patients

I don't know where you read this, but I dont think it is true. Why would a doctor cut bits out of people when there are no disease symptoms ? A skin biopsy is no big deal but that's what it is, to be melodramatic. It might even be unethical.

The lupus band test is done in cases when diagnosis is difficult, to help show if symptoms are being caused by lupus or some other disease with very similar symptoms.
As for results of the LBT, Dr Wallace says in the second edition of his book, p73, that SLE patients show positive 90% of the time from lesional skin and 50% of the time in normal appearing skin. People with skin lupus will show positive 90% of the time from lesional skin and 0-25% of the time in normal appearing skin.

For 'normal patients', positive tests on lesions of sun-exposed skin are N/A, of course because they don't have lesions but biopsy of normal appearing skin gives positive results 0%-20% of the time. So those people do not have lupus but still get an abnormal result.

For 'normal patients' on non sun exposed skin, N/A for positive tests in skin lesions, again because there are no lesions, and 0% in normal appearing skin.

So, even for people with definite lupus, diagnosed because of other symptoms, there is a 50% chance that the band test will not be positive on non sun exposed skin. Even if there is a positive result it doesn't mean you would get diagnosed with lupus. There would have to be other symptoms.

I really don't think at this stage that you need feel anxious still less feel dread about your whole life turning upside down. The specialist did what he had to professionally just as a rheumatologist refers out if he finds anything beyond his competence, but that doesn't mean you do have lupus.

As for the future, who can say ?
Read the criteria lists to see if there is anything in your experience,or your past health history. There are other symptoms that don't appear on the list because they are so common.
If you do develop lupus it could be a very mild form easily treatable. There's another unknown: why are some people so much more severely affected than others.
People living perfectly normal lives with their lupus well controlled don't usually post on forums.
Be concerned, yes. Be informed as much as necessary, yes, but don't worry until you know what there is to worry about.


All the best
Clare

 

[mady]

Clare thanks so much for your reply and explanation. It really helped me to understand things better. The LBT I read it in the same book you mentioned, not sure which page.Think it was the first time I saw the book on an internet version, now I have a copy of the second edition .I'll get to pg 75 soon.
You are totally right .Maybe I don't have lupus ,but I have low platelets count and that is something big.I whish I could find a doctor that does not pretend I'm different pieces and would be able to treat me as a whole patient .Going from doctor to doctor and realizing they are more worried about the time they have to be with me and the insurance payment than about whether they can do something for me let me with a feeling of despair .Money is on the bottom line and a difficult case to diagnose is not of interest for many of them.
For the time being, I'm reading the posts in this forum and some of them have convinced me that this is something to be proactive about. What I'll learn from this disease maybe is for me, maybe for someone else, but the medicines for lupus are not joke at all. They have serious side effects. I'm sure I'll take them if someone can explain me what is going on with me. Imagine that I start taking immunosuppressant and my IgA goes even lower which will increase the chances for infections,in the meantime the other part of the inmunosystem is unable to combat the infections because I’m inmunosupressed, ah!!! By the way I’m allergic to penicillin and cephalosporin ABX. !!!Not the only ones,but a great chunk of what could help infections.

Thank so much.The day is cloudy,perfect time for reading


Mady