I think I diagnosed myself

I think I diagnosed myself

Joined: June 15th, 2011, 12:26 pm

August 9th, 2011, 12:34 am #1

I went for routine bloodwork last July and they told me my ANA panel was positive. That is the test for antibodies. I was sent to a rhematologist as a precaution. She ran a full panel and it came back positive again. Also positive for SS-B antibodies mostly found in Sjogren's syndrome. She told me since I had no symptoms, not to worry and there is a possibility it could be a false positive which sometimes can happen. I forgot about it for a year and now here I am.

I have become literally obsessed with researching every possiblity to my DOR. It kills me everyday that I have this diagnosis. Sjogren's is an autoimmune disease and autoimmune diseases cause DOR. Tada- is this why I have DOR??? The doctor said not to worry. No symptoms= no disease. I am going on Sat. for bloodwork to see where this stands. This is eating me up alive. Then I read the possibility of neonatal heart block with this. I am so confused and left wondering. AF will be here next week and I have to decide to pursue another IUI or go to IVF. All this new info. is confusing me even more. There are also higher risks of miscarriage with autoimmune disease.

Does anyone else have an autoimmune disease and if so, were you told it could be related to DOR?
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DeeinNYC
DeeinNYC

August 9th, 2011, 12:39 am #2

Hi,

Im sorry that you have gotten this diagnosis, but in a way, it is good to know what you are facing. You need to go see a Reproductive immunologist or an RE that treats immune issues. Two things. First..if you have not done so already, pick up and read the book Is Your Body Baby Friendly by Dr. Beers. He is/was the guru on immune issues. Second, please visit the Reproductive immunology group on yahoo...these ladies know everything:

http://health.groups.yahoo.com/group/immunologysupport/

You likely need an immune protocol that calls for intralipids or IVIG, a steroid and possibly LOvenox or some other blood thinner. I really do not know about your specific diagnosis...but I know that now that you know...you can do something about it.
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Anonymous
Anonymous

August 9th, 2011, 12:43 am #3

I went for routine bloodwork last July and they told me my ANA panel was positive. That is the test for antibodies. I was sent to a rhematologist as a precaution. She ran a full panel and it came back positive again. Also positive for SS-B antibodies mostly found in Sjogren's syndrome. She told me since I had no symptoms, not to worry and there is a possibility it could be a false positive which sometimes can happen. I forgot about it for a year and now here I am.

I have become literally obsessed with researching every possiblity to my DOR. It kills me everyday that I have this diagnosis. Sjogren's is an autoimmune disease and autoimmune diseases cause DOR. Tada- is this why I have DOR??? The doctor said not to worry. No symptoms= no disease. I am going on Sat. for bloodwork to see where this stands. This is eating me up alive. Then I read the possibility of neonatal heart block with this. I am so confused and left wondering. AF will be here next week and I have to decide to pursue another IUI or go to IVF. All this new info. is confusing me even more. There are also higher risks of miscarriage with autoimmune disease.

Does anyone else have an autoimmune disease and if so, were you told it could be related to DOR?
You asked if anyone has tested for autoimmune problems that may be responsible for ovaries aging too soon. I tested "weak positive" for AOA (anti ovarian antibodies) once, asked the dr if that caused the high FSH/ low AFC, he said it could be. The theory is these antibodies attack tissue (ovaries). FWIW, I have no symptoms, healthy as can be, absolutely no allergies or weaknesses or health problems ever, so I sort of doubt the "autoimmune" angle myself.

The other thing that has been found to be related to POF is Fragile X, but these are really not tests that REs will suggest for people. Funny, tests like these and more are required for egg donors, they probably should be required for everyone but they are expensive and they are not conclusive anyway.
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Joined: June 15th, 2011, 12:26 pm

August 9th, 2011, 1:05 am #4

Hi,

Im sorry that you have gotten this diagnosis, but in a way, it is good to know what you are facing. You need to go see a Reproductive immunologist or an RE that treats immune issues. Two things. First..if you have not done so already, pick up and read the book Is Your Body Baby Friendly by Dr. Beers. He is/was the guru on immune issues. Second, please visit the Reproductive immunology group on yahoo...these ladies know everything:

http://health.groups.yahoo.com/group/immunologysupport/

You likely need an immune protocol that calls for intralipids or IVIG, a steroid and possibly LOvenox or some other blood thinner. I really do not know about your specific diagnosis...but I know that now that you know...you can do something about it.
Thank you- I just joined the group. I cant believe I just thought of this now. My RE never asked me about immune disorders. Shouldnt they take bloodwork as a possible cause of DOR? Most of the time, autoimmune goes undiagnosed b/c it usually shows up in blood before any symptoms arise.
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CatMama
CatMama

August 9th, 2011, 2:13 am #5

I went for routine bloodwork last July and they told me my ANA panel was positive. That is the test for antibodies. I was sent to a rhematologist as a precaution. She ran a full panel and it came back positive again. Also positive for SS-B antibodies mostly found in Sjogren's syndrome. She told me since I had no symptoms, not to worry and there is a possibility it could be a false positive which sometimes can happen. I forgot about it for a year and now here I am.

I have become literally obsessed with researching every possiblity to my DOR. It kills me everyday that I have this diagnosis. Sjogren's is an autoimmune disease and autoimmune diseases cause DOR. Tada- is this why I have DOR??? The doctor said not to worry. No symptoms= no disease. I am going on Sat. for bloodwork to see where this stands. This is eating me up alive. Then I read the possibility of neonatal heart block with this. I am so confused and left wondering. AF will be here next week and I have to decide to pursue another IUI or go to IVF. All this new info. is confusing me even more. There are also higher risks of miscarriage with autoimmune disease.

Does anyone else have an autoimmune disease and if so, were you told it could be related to DOR?
I was told by three physicians (MD and RE) that if you have one autoimmune issue (like the all-too-common hypothyroid or hyperthyroid), then you definitely have others. I have hypothyroid, but I seemed to test normal for a slew of other autoimmune issues. (I had to BEG my RE to test.) I was told that once patients like us test high for FSH, REs don't test us for autoimmune because were "incurably infertile" (isn't that nice?) and the knowledge does nothing to get us pg.

I am positive that I have some kind of weird autoimmune issue that has attacked my ovaries. There is just NO OTHER EXPLANATION for being so incurably infertile in mid-20s (I'm now mid-30s and have twins via DE).

When my maternal grandmother passed away, her death certificate cited "autoimmune disease" as one cause of death. I found that FASCINATING and STARTLING. No one has any information about this, either.

Not much help, I know. But just wanted to chime in. I've been where you are. I eventually gave up and turned to DE. I just couldn't live in the chaos and pain. Everyone's journey is different. I wish you all the very best.

xo
Cat
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Joined: September 29th, 2010, 9:51 pm

August 9th, 2011, 3:19 am #6

I went for routine bloodwork last July and they told me my ANA panel was positive. That is the test for antibodies. I was sent to a rhematologist as a precaution. She ran a full panel and it came back positive again. Also positive for SS-B antibodies mostly found in Sjogren's syndrome. She told me since I had no symptoms, not to worry and there is a possibility it could be a false positive which sometimes can happen. I forgot about it for a year and now here I am.

I have become literally obsessed with researching every possiblity to my DOR. It kills me everyday that I have this diagnosis. Sjogren's is an autoimmune disease and autoimmune diseases cause DOR. Tada- is this why I have DOR??? The doctor said not to worry. No symptoms= no disease. I am going on Sat. for bloodwork to see where this stands. This is eating me up alive. Then I read the possibility of neonatal heart block with this. I am so confused and left wondering. AF will be here next week and I have to decide to pursue another IUI or go to IVF. All this new info. is confusing me even more. There are also higher risks of miscarriage with autoimmune disease.

Does anyone else have an autoimmune disease and if so, were you told it could be related to DOR?
That is interesting. I too believe there is some autoimmune connection to my diagnosis. I have meniere's - an autoimmune of the vestibular functioning. Often once destroyed the tissues, in some cases, are not possible to replace. I have also been having some difficulty with my hands and will be speaking to my primary at my next physical; I am hoping it is only minor arthritis and not something more severe like RA. I think if you want to be more cognizant of other health issues that may arise, it would be prudent to get tests. I have not gotten any tests but I am keenly aware of my other autoimmune related health issues. I had POF at age 30 so I am assuming more likely than not, something has attacked my ovaries: endo, autoimmune, call it whatever. Hoping you can find some good local resources and also on these boards. These are amazing women!!
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DeeinNYC
DeeinNYC

August 9th, 2011, 5:01 am #7

Thank you- I just joined the group. I cant believe I just thought of this now. My RE never asked me about immune disorders. Shouldnt they take bloodwork as a possible cause of DOR? Most of the time, autoimmune goes undiagnosed b/c it usually shows up in blood before any symptoms arise.
that very few doctors have any experience at all with immune issues as they affect TTC. Many others feel that treating immune issues is junk science and refuse to treat it. Im not sure that the issue is taking blood-work to determine if one has DOR..I think the issue is taking blood-work to determine if you have an autoimmune issue. I just took a look at the sections in the Beers book on ANAs and bottom line...you need treatment. I have personally had the NK Assay done and have high normal elevated levels that I plan to treat with my next cycle by doing an immune protocol as part of my IVF. From what I can tell..and the Beers book is a difficult one ..you need to at the very least get a full thyroid panel done and Natural Killer cell testing done as Beers states:

ANAs are often associated with hyperactivated NK cells, which can cause an immediate inflammatory response against the embryo, thereby increasing the likelihood of implantation failure or early loss.

He also states

It is now believed that many cases of premature ovarian failure are caused by an autoimmune disease that depletes the ovarian follicles and attacks the eggs, inflicting DNA damage.

You might want to also have a full thrombophilia panel done for clotting disorders to cover your bases.
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jnoels
jnoels

August 9th, 2011, 1:01 pm #8

I went for routine bloodwork last July and they told me my ANA panel was positive. That is the test for antibodies. I was sent to a rhematologist as a precaution. She ran a full panel and it came back positive again. Also positive for SS-B antibodies mostly found in Sjogren's syndrome. She told me since I had no symptoms, not to worry and there is a possibility it could be a false positive which sometimes can happen. I forgot about it for a year and now here I am.

I have become literally obsessed with researching every possiblity to my DOR. It kills me everyday that I have this diagnosis. Sjogren's is an autoimmune disease and autoimmune diseases cause DOR. Tada- is this why I have DOR??? The doctor said not to worry. No symptoms= no disease. I am going on Sat. for bloodwork to see where this stands. This is eating me up alive. Then I read the possibility of neonatal heart block with this. I am so confused and left wondering. AF will be here next week and I have to decide to pursue another IUI or go to IVF. All this new info. is confusing me even more. There are also higher risks of miscarriage with autoimmune disease.

Does anyone else have an autoimmune disease and if so, were you told it could be related to DOR?
This is really interesting. I have had almost all of this bloodwork done as part of a work-up for recurrent miscarriages (I've had two). My first RE mentioned autoimmune issues as a potential cause of multiple losses. We also know that DOR can sometimes cause m/c as well... and that there's a link between DOR and autoimmune issues. If autoimmune bloodwork is part of the standard work-up for recurrent losses, it should be with DOR patients as well.

I also know that my new RE paid attention to any of my bloodwork where the levels technically came back as normal, but were really close to the threshold. I think it's a pretty inexact science.

Advocate for yourself like crazy. Push your doc for the tests you haven't had, tell him or he about your grandmother, find a new doc if you have to. There are definitely ways to treat autoimmune issues.

Good luck. Thinking of you
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