Anyone else here TTC with autoimmune disease?

[tinksmagic]

I'm now being told I'm fighting a losing battle as I'm am not only confirmed Hashimoto's Thyroiditis (you'd think the partial thyroidectomy would have sent up a HUGE red flag to all the doctors...), but now I'm being screened for Celiac as you don't typically have 1 without the other.

I've been eating whole foods and taking appropriate supplements since March, but now I have to cut all gluten out of my diet to boot and that a single iota of gluten can stay in your system for up to 8 months and wreak havoc on your fertility systems. My ENT has chalked my recurrent m/c's up to the autoimmune and he actually had the audacity to "pouty face" me and tell me to wait for grandchildren!!! This is the same guy who 14 years ago told me after removing part of my thyroid that I would never have kids again yet didn't even bother to tell me how to treat myself after the surgery!!! Just having my 2 DD's has been labeled a "miracle" and I'm now told to be happy with them and be done.

Yes, I'm furious over this. Had I been on a treatment plan, I might not have lost so many years to unsuccessful trying and maybe I would have a better chance due to taking proper care of myself and what I ate so that my boys would be here with me now.

Sorry for ranting, but the more I think about it, the more upset I get.

Just hoping that everything I'm doing will not be for nothing when we cycle again, which is now looking like late December again.

[michaela]

Yes, me. I have several immune issues that are mentioned in my signature. It sounds like you have dealt with some interesting doctors so I am going to recommend the BEST doctor that deals with this kind of stuff. His name is Dr. Jeffrey Braverman in Long Island. His website is www.preventmiscarriage.com. I seriously wouldn't mess around with any other doctors until you speak with Dr. B. I know several people, including myself, that have worked with him to find a treatment for our immune issues and he is highly regarded in the infertility community. There are so few doctors that understand all these immune issues but he is one that does. Yahoo has a group of immunology patients and they all go to Braverman (or 2 other docs) but I know you have mention you are in NY. I seriously can't say enough good things about him and you won't need to look for another doctor I promise you that much.


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[michaela]

I also wanted to mention that Celiac's isn't something they test for when it comes to figuring out autoimmune or alloimmune disorders with IVF. You can definitely have that test done to see if it is something you suffer from but just know that the results may not be the full picture and you will probably need more testing such as cytokine levels and cytokine ratios (just as an example there are a ton more tests besides cytokines). There are few tests included under the umbrella of what they test for for Celiac's so that is good you are getting that done as testing like that is always good if you are concerned about it. I hope you get the answers you need soon and definitely PM me if you have any questions!

[Hobbermittens]

I can't believe your doctor told you that you couldn't have more babies after having a partial thyroidectomy! I had half my thyroid removed, and no one told me it would affect my fertility (and it didn't).

I am sorry that you are dealing with these issues, and I hope your next cycle is successful!

[tinksmagic]

Michaela,
I'm in MA, but only 4 hours from NY, so don't mind the travel. I'll PM you, I'm interested in learning more about what you've gone through. They're checking me for Celiac's to rule that out, though he's pretty sure I've got it. I've been autoimmune for years, at least since '98 when they found the hashimoto's.
It took me 2 years since my surgery then 6 years after her birth for the next one, and that's with constant trying. They have no other explanation other than the autoimmune. Now I know my right tube is junk, but IVF it won't matter. They only tell me I'm miscarrying now due to my age. I can't believe that. They aren't running testing I feel. I want a full work up, something other than age is a factor here, so we're chipping away at it.
We'll get there!!!

[tinksmagic]

I can't believe your doctor told you that you couldn't have more babies after having a partial thyroidectomy! I had half my thyroid removed, and no one told me it would affect my fertility (and it didn't).

I am sorry that you are dealing with these issues, and I hope your next cycle is successful!

Thank you! Yep, in '98 was told it wouldn't happen, but we got our daughters. So I am capable. I also know that my eggs fertilize fine, implant fine, but the darn abnormalities are the issue. For all I know it's the IVF drugs. We have kinda half been trying but no luck.

[fresas]

I've been thinking of you! I'm glad you are getting ready to get on the path to being as healthy as possible and preparing your body for a healthy pregnancy. Hang in there.

[tinksmagic]

I've been thinking of you! I'm glad you are getting ready to get on the path to being as healthy as possible and preparing your body for a healthy pregnancy. Hang in there.

Thank you, Fresas!
AF showed her face again yesterday and I'm again once happy to see her, lol, though each month she's consistently 27 days, not 28 (hubby thinks I'm syncing up with DD in the house)
He's also getting anxious to try again (too many healthy changes being thrown his way and the gluten free brownies and no milk conversation set him off today). He just wants to hurry up and have the baby(ies). I'm heaving involved with doctors now for my autoimmune. I get my thyroid scanned Friday. My blood draw was interesting, my blood has actually changed color!!!

[stacey221958]

Hi! I just wanted to let you know that I was diagnosed with Hashimotos last year and was unsuccessful on a couple of IVF/PGD cycles after the diagnosis. We moved to the IUI route due to a blocked tube and we are now 12 weeks pregnant with twins. GL.

[glory]

Hey, I don't have much expierience with immune issues, but wanted to say that I don't know if you should go gluten free until you have your endoscopy, otherwise you may get inconsistent results. You need to have been eating gluten so they can see the damage it is making. Sounds like it is time for a new dr! The blood test for celiac is good but final diagnosis will be by endoscopy.

I am really glad though that you have some answers xo

[tinksmagic]

Stacey that's awesome!! Congrats!! Funny that IUI worked better... but at least it worked!

Glory, I am negative for Celiac, but can't do gluten just the same. It feeds the white blood cells which attack the thyroid, but at least it's one less problem to worry about!

As for me now... I went for my ultrasound last week, my TSH is on the rise and my TPO is very high. They found my remaining right thyroid to be enlarged and has nodules. I go for a fine needle aspiration on Wednesday now to make sure it's not cancerous. I can't win. I have no comparison blood work to know if my TPO is rising or falling, but for now, it's high enough for concern. I will probably end up with a complete thyroid removal. Either way, I wish they would just put me on replacement hormones so everything will regulate and I can try again.

[tinksmagic]

Good news is my results came back cancer free!!!! One less worry!!! Endo appointment forthcoming... Vit D levels checked Friday, just waiting on results.... We're getting there!

[auroara78]

so happy to hear this, Tink!! that's great news!

[lisa3delta]

im so sorry for what youre going through, i too have hashis, my doctor says its not bad enough to need meds yet but he never mentioned it could make fertility problems, how does it affect fertility exactly? should my doc be talking to me about this? he knows were ttc : /

[tinksmagic]

im so sorry for what youre going through, i too have hashis, my doctor says its not bad enough to need meds yet but he never mentioned it could make fertility problems, how does it affect fertility exactly? should my doc be talking to me about this? he knows were ttc : /

When I had my hemithyroidectomy 14 years ago my dr. (ENT specialist, not an endo) told me I would probably not be able to have kids again (I already had 2 at the time). I thought he was nuts. 18 months of trying later, we got DD. We started trying 3 months after her birth so we wouldn't have to wait. 6 years of trying later, we got DD #4. I wanted to start trying again (lol, I was still waiting for DD's birth and was already thinking of another!) but we got wait listed for 3 years by that evil clinic in VA then CA. I think we all know them...

We finally started cycling in '09, everything on my and hubby's end checked out normal. After second m/c we have been told "advanced maternal age". My TSH is normal (but rising) but my TPO is off. I questioned my ENT if this is what's causing the problem. He says NO, I find it hard to believe. I'm not on meds, he didn't think I needed them. The thyroid controls hormone production, means of checks and balances. I'm to understand that when the thyroid isn't 100% it sets in motion other glands to take over which can mess up other hormone balances. Add into the mix what happens within the body when there are imbalances and thyroid isn't performing correctly: inflammation (which I have), inability to conceive on your own (which I also have though IVF takes, just not creating good embryos). We're on the assumption it's my eggs, but we aren't 100% sure it's not hubby though it doesn't point that way. Most articles I've read just say a result of Hashi's is infertility. Nothing specific. I just think it messes with your cycles. My period was never regular til I had the surgery, then it was like clockwork (when we got our last DD) but after her it went screwy again. What I thought was "normal" was actually everything BUT normal! Now it's almost perfect with the exception of it being a 27 day cycle. I can't complain, I ovulate quite well (to the point where hubby realizes it and lol, sabotages the chance of an "oopsie"). I attribute healthy foods and supplements to that!

My vit d was way low, though it's gone from 13 in May to 38!!! last week!!!! My blood looks awesome! I can only hope that since my blood looks good, eggs are improving (f/x!!!) but my thyroid is still enlarged and has nodules which I'm hoping will shrink when I get the inflammation under control. I did manage to have my 2 girls with Hashi's but it wasn't quick or easy (though fun trying!) and in my mind, things are slowly coming back into balance. Time will tell!

[tinksmagic]

Finally determined that I need to be on Levoxyl. My TSH went from 1.2 in May, to 1.9 in August to 2.9 in October!!! While they want to see it under 3, it's borderline so Levoxyl for a month then retest. Hopefully this is just temporary.

[tinksmagic]

Popping back here to quickly update. It's been just about 3 months that I've been on the levoxyl. For some reason FCNE told me they couldn't check my TSH (even though they prescribed the meds) because as I was now "their patient in a cycle" my insurance wouldn't cover it, but yet when I log into the "portal" I was supposed to have follow up blood drawn Nov 14. Whatever, I needed a regular physical from my PCP anyway and I'm glad I did. He ran a full panel work-up mid December and checked EVERYTHING that the others wouldn't. Other than my thyroid antibodies still present and high (but lower than in August), everything else checked out OK. My T3 and T4 were slightly off but not enough to be of concern and my TSH went WAY back down to a nice .963 (and probably still lower).
Of course now with a change in insurance, the earliest we're looking at is March, which is fine by me!!! On a brighter, more positive note, I'm down 20 pounds, hubby is down about 25! And I've gotten real good at cooking healthy and gluten free!!!
It is sad not to see the same ladies on the forums from a year ago as most of them have their bundles of joy. We have thrown caution to the wind a few times but nada.... This is the last month we weren't careful and hubby's been warned, lol.

[The Anchor]

Good luck tink...I hope your journey brings you your boy(s) :)

[onthepond]

So glad things are settling down for you. I, too, have Hashimotos and although it has caused a ton of other problems for me (hair, skin, exhaustion), I am blessed that it has not affected my fertility at all. Definitely continue to be your own advocate for stuff. I finally found an endo dr that I love. She listens to me and it has made all the difference. I can tell when my levels are off and my meds need to be adjusted, but I am just happy to have her. Good luck!

[yamanote]

Me! I have just put puzzle pieces together this last year (I'm 41 now) that I have inherited autoimmune disorders from my mother. She didn't realize she had them either, but had to have a liver transplant 6 years ago from her unknown disorder destroying it.we both also have asthma and eczema, along with a few other issues. Mine clear up for the most part if I cut out ALL milk proteins from my diet. This I discovered after nearly losing the vision in my right eye due to 'unknown cause' inflammation in the vitreous...which disappeared when I cut out milk. My retinal doctor at the local health-sciences university is fascinated....hey, at least its making someone's day, lol!

Anyway, I have elevated nk cells and a vastly iveractive th1 response (hey, at least I never get sick!), so for right now I'm on 20mg prednisone and some other supplements. If that doesn't work, I'll have to figure out the expense of dr.Braverman or dr. Beers since they successfully treat for this all the time... but yikes.... FX the prednisone works.

[yamanote]

One more funny thing I have realized this week: caffeine is my friend! I think it has to do with the overactive Th1, but I feel great if I have a load of caffeine before bed... I fall asleep easily, sleep soundly, and wake up super refreshed. If I don't have any before bed, I sleep too lightly and wake up exhausted. So weird! But if it works.... who am I to argue :-)

And Tinksmagic, I'm so happy to hear they didn't find any cancer :-) best of luck ttc!