+ANA and TTC

[mustloveerica]

Ok so this is kind of a long story feel free to skip ahead to the TL;DR if your don't feel like reading...

When I was in high school I got pretty sick. I developed bruises and rashes all over my body and I was in excruciating pain in my knees, ankles and wrists. I got to be a test dummy part of grand rounds twice because no doctor could figure out what was wrong with me. When my ANA came back positive they settled on the diagnosis of lupus profundis. I was put on an anti-inflammatory and an immunosuppressant medication. They worked! My symptoms disappeared and I went back to being happy and healthy.

A year later I stopped taking the medication to give my kidneys a break. I can't remember which but one of those medications had the possibility of causing kidney failure. Well for one reason or another I never went back on the medications and my symptoms never came back. It has been over ten years since I stopped taking it. This led me to believe that maybe I didn't really have lupus.

Fast forward to today. I had some general bloodwork done as part of my yearly exam. I saw the results online today but my doctor hasn't called to discuss. However, I noticed that my ANA is positive and my white blood cell count is still elevated. I did some google searching and the general consensus seems to be that a positive ANA can interfere with fertility causing implantation problems because of inflammation. But we all know how correct the interwebz tend to be (sarcasm). Anyone else ever heard this? Where my science ladies at?

TL; DR: my genes are fucked up and my ANA is still positive. Could this be a factor in why I have not yet gotten a BFP?

[Unknown]

ANA only shows if you have an active autoimmune disease. Autoimmune diseases can flare, and if you are not in the mists of a flare your ANA levels would not be elevated and you would show no signs of the disease. The type of autoimmune disease and antibodies may or may not have an effect on your fertility/implantation.

For the record I have Graves, Hashimoto's (which are both not active since my thyroid surgery) and probable MCTD (which has some similarities to Lupus).

Based on my diagnosis my RE and Endo told me is that the antibodies can be found in your ovaries causing some ovulatory issues, which is what the diagnosis for me is. I was told it was weak ovulation. I never have a super large follicle and even on Clomid have never had more than 1, and when I ovulate my egg tumbles out more than bursts out of the follicle. It was never mentioned that inflammation could cause implantation problems, but that would make sense.

I think first thing is first and talk to your dr about your results, and if you haven't had a full panel work up to determine if they still think it is Lupus or another AI.

ETA: I wouldn't continue w/ your GP for this, if you don't have a Rheumatologist I would start there. I'm not sure who diagnosed you, but "settled on" lupus is not an acceptable diagnosis, and you really should be seeing a specialist to get a true diagnosis.

[mustloveerica]

Unknown thank you. That is helpful information. I will have to search out a new rheumatologist. I haven't been to see once since I was a kid and she will not see me as an adult. Up until now it never occurred to me to ask if any of my past/current AI issues had any effect on my TTC. Do you think this would fall under the year rule similar to an RE? We are on cycle 8. Should I wait out the next 4 months since I am not having any AI symptoms or should I go ahead and contact and rheumatologist?

[mustloveerica]

I don't know if settled on is the right wording. My first diagnosis was morphea which terrified me. At the time lupus was a lot less scary. So I didn't question the diagnosis. And I have only been skeptical of that diagnosis since I have had no symptoms for a decade. It could very well be correct, It just seems a little odd to me.

[Unknown]

I would start by figuring out what is wrong and getting that under control if needed. Most likely an RE would have you get any AI under control before treating you anyway. When I was first working w/ my Endo I had to take a few breaks TTC, and after I was officially controlled after my surgery we waited a year after of well timed cycles before seeing the RE. Since my AI was under control and I saw I was ovulating and timing things well through charting we waited. We think my husbands MFI is a bigger issue for us.

Do you chart? If not I would highly recommend it. Since it is believed my issues cause my irregular cycles it was really helpful to see if/when I was ovulating so by the time I went to the RE they had a better idea by looking at my charts how much my AI may/may not effect my cycles.

[mustloveerica]

Yes I have 7 months of charts all showing a clear thermal shift with perfectly timed intercourse. So I do believe I am ovulating. Which is why I was considering implantation problems and not ovulation problems. But I guess there's no way to be sure when it comes to AI.

[Unknown]

It is also very hard to diagnose many AI, since many have overlapping symptoms and many don't have a single test that can diagnose. I was also originally diagnosed w/ Sjogren's, but that was upgraded to probable MCTD. The Rheumatologist is only saying it's probably based on symptoms and a few elevated levels. Since my symptoms can still be treated w/ medicine like prednisone and drops for my eyes, he is leaving my diagnosis there. Assuming that is what I have it will probably get worse over time, and at that point he will say 100% that is what I have and can treat w/ the immunosuppressants.

[mustloveerica]

I'm sorry to hear about everything you are going thru. AI truly sucks and usually leaves more questions than answers.

[Unknown]

Jan 30, 2015 14:55:09 GMT -5 mustloveerica said:

I'm sorry to hear about everything you are going thru. AI truly sucks and usually leaves more questions than answers.

TRUTH! I wish you luck and hope you are able to find answers!

Maybe somebody else will have more insight than I do as well.

[getzystark]

Jan 30, 2015 14:48:01 GMT -5 Unknown said:

I would start by figuring out what is wrong and getting that under control if needed. Most likely an RE would have you get any AI under control before treating you anyway. When I was first working w/ my Endo I had to take a few breaks TTC, and after I was officially controlled after my surgery we waited a year after of well timed cycles before seeing the RE. Since my AI was under control and I saw I was ovulating and timing things well through charting we waited. We think my husbands MFI is a bigger issue for us.

Do you chart? If not I would highly recommend it. Since it is believed my issues cause my irregular cycles it was really helpful to see if/when I was ovulating so by the time I went to the RE they had a better idea by looking at my charts how much my AI may/may not effect my cycles.

I agree with the bolded. I wonder if you could call a RE's office and get their opinion on what you should do. It's possible that the AI could be playing a role in things for you (mustloveerica), and they might be interested in looking into that further, before the 1 year mark.

We're not RE's, nor are we immunologists (unless I've missed someone somewhere) so it's possible that your circumstances may negate the 12 month "rule."

[katelou]

Actually, positive ANA =/= autoimmune disease. About 5% of the population will test positive for ANA and only half of them have, or will ever develop, an autoimmune disease. In people with a dx'ed autoimmune disease, yes, it can be helpful in gauging disease activity. FWIW doctors actually don't have a clear understanding of what ANA really does or its implications, only that it is associated with AI disease activity in some people.

It is also important to have an ANA titer (also a blood test) done if you haven't. It is measured in a ratio that doubles: 1:40, 1:80, 1:160, 1:320, 1:640 etc. A value of 1:80 is considered low and generally not concerning in the absence of other symptoms. 1:640 and above is considered high and very suggestive of active AI disease. If you haven't had this test done, it's worth asking about.

I know very little about ANA and conception except my own anecdote that I conceived my daughter a year after being dx'ed with a second autoimmune disease and an ANA of 1:320.

[mustloveerica]

Jan 30, 2015 15:12:02 GMT -5 getzystark said:

Jan 30, 2015 14:48:01 GMT -5 Unknown said:

I would start by figuring out what is wrong and getting that under control if needed. Most likely an RE would have you get any AI under control before treating you anyway. When I was first working w/ my Endo I had to take a few breaks TTC, and after I was officially controlled after my surgery we waited a year after of well timed cycles before seeing the RE. Since my AI was under control and I saw I was ovulating and timing things well through charting we waited. We think my husbands MFI is a bigger issue for us.

Do you chart? If not I would highly recommend it. Since it is believed my issues cause my irregular cycles it was really helpful to see if/when I was ovulating so by the time I went to the RE they had a better idea by looking at my charts how much my AI may/may not effect my cycles.

I agree with the bolded. I wonder if you could call a RE's office and get their opinion on what you should do. It's possible that the AI could be playing a role in things for you (mustloveerica), and they might be interested in looking into that further, before the 1 year mark.

We're not RE's, nor are we immunologists (unless I've missed someone somewhere) so it's possible that your circumstances may negate the 12 month "rule."

I understand. I just felt silly running to a rheumatologist if my thoughts were completely unfounded and with no symptoms.

I'm also just really scared of getting bad news.

[madamewaffles]

I don't have any experience with ANA+, but wanted to offer ((hugs)). I hope you get answers at your follow-up.

[getzystark]

Jan 30, 2015 15:22:59 GMT -5 mustloveerica said:

Jan 30, 2015 15:12:02 GMT -5 getzystark said:

I agree with the bolded. I wonder if you could call a RE's office and get their opinion on what you should do. It's possible that the AI could be playing a role in things for you (mustloveerica), and they might be interested in looking into that further, before the 1 year mark.

We're not RE's, nor are we immunologists (unless I've missed someone somewhere) so it's possible that your circumstances may negate the 12 month "rule."

I understand. I just felt silly running to a rheumatologist if my thoughts were completely unfounded and with no symptoms.

I'm also just really scared of getting bad news.

I get that. Ignorance isn't bliss in this case though. I'd look into it further. I'm not saying "run" to anyone in particular, but to ease your mind, it's something to think about.

[teenybenoit]

I have an autoimmune disorder known as lichen sclerosis and basically my lady bits get red, irritated and sore and they tear when touched, wiping, if my pee is really strong from being dehydrated. It's often confused as yeast but it is definitely not yeast. Having a baby is hard because intercourse is painful and vaginal birth won't happen because I won't have a vajayjay left if I do.
Anyway, the only meds a dr would offer was steroids and that could not be used for long term because it would cause other issues such as tearing the already tender skin up, I could have surgery done which would also temporarily improve my sex life but in the end there was no real "cures"
I wondered if my mc was due to my body attacking itself? No one could seem to confirm or deny this.
I can tell you one thing that helped me not have flare ups for the past year was to go gluten free, stop all sugar and processed food and I went in supplements from a homeopath.
I don't know that this is helpful to you but I wanted to say I feel your fears. Hugs.

[katelou]

Jan 30, 2015 15:22:59 GMT -5 mustloveerica said:

Jan 30, 2015 15:12:02 GMT -5 getzystark said:

I agree with the bolded. I wonder if you could call a RE's office and get their opinion on what you should do. It's possible that the AI could be playing a role in things for you (mustloveerica), and they might be interested in looking into that further, before the 1 year mark.

We're not RE's, nor are we immunologists (unless I've missed someone somewhere) so it's possible that your circumstances may negate the 12 month "rule."

I understand. I just felt silly running to a rheumatologist if my thoughts were completely unfounded and with no symptoms.

I'm also just really scared of getting bad news.

I'm sorry. I know it's scary.

When you say your "yearly exam", do you mean with your OBGYN or your GP? 

I know every GP is different, but I found mine to be surprisingly knowledgeable about AI disease and super helpful at easing my fears when I was dx'ed with AI disease #2 (Immune-mediated thrombocytopenia). As much as you are scared about bad news, you might very well get good news that would make you feel a lot better about the situation.

Good luck!