My Dr. KK Update

RunCC37 · October 2014

We had our follow-up with Dr. KK on Monday, and all I can say is WOW. It was a lot of information to take in, and it seems like we have a lot to work on. After being mostly unexplained for so long, I am happy to have something concrete to focus on. Hopefully it'll make the difference we've been looking for.

In a nutshell, I'm going on quite a few additional supplements and medications before we get going with our DE cycle. We are planning to do a mid-November ER/ET and will freeze-all if my uterus doesn't get sorted out by then.

The details if anyone is interested

High IgG
Moderately high NK cells = IVIg
Vitamin D deficiency = supplement
Protein S deficiency = Lovenox
High PAI-1 = Metformin, low-carb diet, regular exercise (though marathon training does not qualify)
Autoimmune Thyroiditis = Synthroid
Low-normal DHEA = supplement
POF
Positive ANA = see a rheumatologist, treat with Prednisone & IVIg
Restricted blood flow to the uterus
Recommended Supplements: CoQ10 (600mg), Vit D (4000iu), Vit E (400iu), Fish Oil (2000mg), DHEA (25mg)
Recommended Medications: IVIg, Prednisone, Lovenox, LD Baby Aspirin, Metformin, Synthroid
Recommended Lifestyle Changes: low-carb diet, regular exercise, maintain current BMI, no marathons

luvboston · October 2014

RunCC37 said:
We had our follow-up with Dr. KK on Monday, and all I can say is WOW. It was a lot of information to take in, and it seems like we have a lot to work on. After being mostly unexplained for so long, I am happy to have something concrete to focus on. Hopefully it'll make the difference we've been looking for.

In a nutshell, I'm going on quite a few additional supplements and medications before we get going with our DE cycle. We are planning to do a mid-November ER/ET and will freeze-all if my uterus doesn't get sorted out by then.

The details if anyone is interested
High IgG
Moderately high NK cells = IVIg
Vitamin D deficiency = supplement
Protein S deficiency = Lovenox
High PAI-1 = Metformin, low-carb diet, regular exercise (though marathon training does not qualify)
Autoimmune Thyroiditis = Synthroid
Low-normal DHEA = supplement
POF
Positive ANA = see a rheumatologist, treat with Prednisone & IVIg
Restricted blood flow to the uterus
Recommended Supplements: CoQ10 (600mg), Vit D (4000iu), Vit E (400iu), Fish Oil (2000mg), DHEA (25mg)
Recommended Medications: IVIg, Prednisone, Lovenox, LD Baby Aspirin, Metformin, Synthroid
Recommended Lifestyle Changes: low-carb diet, regular exercise, maintain current BMI, no marathons

What was your Ana Titer? Do you mean the pai1 gene?

mm29 · October 2014

That's a lot to take in, but a solid plan!! I wish you the very best. I'm keeping everything crossed these changes bring you a BFP!!

sorrellam30 · October 2014

I'm glad you have a plan despite it being a little overwhelming. I hope the new protocol is just what you need for success

J&D2007 · October 2014

Well, when you take it piece by piece, it really doesn't seem too bad.. Have you had your ANA tested previously? Did they have a suggestion for the 'right' amount of exercise? Once this all sinks in for you, I think you will be excited to have a solid plan and to get out of the awful 'unexplained' category of us infertiles! Good luck and keep us posted!

Grateful&Thankful · October 2014

****PAIF

That's a lot of info but it must feel satisfying to finally have some of your questions & thoughts answered. I'm glad you have a plan in place to work on. I'm excited for your next cycle & t's & p's to you that these changes are the answer.

Mrs.McIrish · October 2014

Ticker warning**********************

Sending T&Ps that the extra drug protocols combined with DE will bring you your THB!!! I'm sorry about no marathons--can't believe that doesn't count for exercise....

Km672 · October 2014

Wow... I'm glad you have your plan to move forward!!

I'm glad you are prepared to do a freeze all, if needed, but I hope you are able to transfer in nov!!

Best of luck lady, you've waited so long I hope the rest of the time flies by!

beachy6 · October 2014

****PAIF Response ****

After being unexplained for so long, I bet it actually feels good to have something to work with! I know that's how I felt after being unexplained for a few years. It actually felt good to have something wrong, go figure!

While that seems like a lot, it doesn't look to unmanageable. Did KK say why to no marathons?

Twinkie0612 · October 2014

I know we've already talked about this, but I am so glad you kept this appointment. I think getting these issues under control can make a difference for you and I have my FX for you so hard! I am praying that this DE cycle is it for you!

zazu13 · October 2014

***SAIF***

That is a lot to process! It sounds like you are headed in the right direction. Lots of optimism and high hopes for you!

RunCC37 · October 2014

luvboston said:
What was your Ana Titer? Do you mean the pai1 gene?

@luvboston - my PAI-1 gene is normal, but the level is high. My ANA Titer is >1:1280 with a speckled pattern (SS-A suggested, so I think perhaps Sjogren's?).

J&D2007 said: Have you had your ANA tested previously? Did they have a suggestion for the 'right' amount of exercise?

@J&D2007 - I have not had my ANA tested before (at least that I remember), but I'm sure the rheumatologist will test it again. From what I understand, that number could've been high if I had a cold (which I didn't think I was sick at the time, but who knows). Dr. KK did not suggest the 'right' amount of exercise and I didn't think to ask because I was absorbing the 'no marathon' thing. Once I mentioned my concerns of triggering depression (which happened to me big time last year when I gave up running for IVF), she said it was ok to do 3-4 easy to moderate runs a week. But no more than 10 miles at a time, so marathon training is out.

@Mrs.McIrish - I KNOW, RIGHT?! When she said "regular exercise" I was like, "CHECK!! Woohoo!" And then she said no marathons, and I was like ::cue the trombone:: wah wah wahhhh!

beachy6 said: Did KK say why to no marathons?

@beachy6 - I think it was because it could cause an inflammatory response.

RunCC37 · October 2014

Thank you for reading & commenting, Ladies

I will start the Metformin tonight and the Synthroid tomorrow morning. And I predict that AF will be here within 24 hours based on these PMS cramps. Which means that our cycle will officially be underway soon!!! Yay!!

J&D2007 · October 2014

I totally understand the worry about depression. While I am definitely not a runner to the amount that you do, I definitely see a change in mood after a week of no running. My DH will actually say 'why don't you go for a run' when I'm a crabby witch. It's no small thing when your mood stabilizer is removed. I don't know what to 'substitute' for that during an ivf cycle to make myself feel better. I hope you find the answer and it all goes smoothly!

RunCC37 · October 2014

It's pretty horrible, isn't it @J&D2007 ... I am hoping that I can keep it at bay because it should only be a month of no running from the time I start estrogen to the time of my beta. If it's a negative beta, then I'll resume running right away. If it's positive, then I will be able to happily justify waiting a bit longer before getting clearance to gradually build the running back up during pregnancy.

For now, I have one last big race in a week, so I'm still training hard. After I cross the finish line, I will reduce my training to find a balance between my sanity and what is acceptable pre-cycle.

STL34 · October 2014

***SAIF***

Best of luck!! Sounds like a lot of information, but it also sounds like she is doing everything possible to make this work for you.

RunCC37 · October 2014

Thank you @STL34! Best of luck to you too!

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