Tuesday, June 28, 2016

Follow up

I had a followup with my doctor today regarding the results. It seems my NKCells look decent - but TNFa is 41.5 (which I had it wrong by typing 45.7 in the last post). Regardless, still high. My AMH levels came back a little weird too. They came back at 10.45 which is really high for someone my age. The last time I got tested for AMH last year in Sept it was 3.71 which is normal...so I have no clue how or why it bounced to 10.45! But from what I read - it could be an indicator of PCOS. Which I haven't been diagnosed with ever and don't think I have. I have regular periods, and ovulate regularly. So it's a little weird to me. My doctor thought it was an excellent number - which made me scratch my head since I am 37 with an AMH that bounced to a number that perhaps an early teenager would have. I am sure my doctor is sick of my constantly questioning things - but I don't care. This is my body and if I want to know more - or have more questions...I'm going to ask. I am not shy and the way I see it - is she is working for me. I am paying for her services. So I don't care if I am a bug-a-boo when it comes to my health.

  Anyway, my doctor. That is another story. I like her, she is really nice...but sometimes I feel that she isn't that clued in. There is this drug that is commonly used in the UK that has proven to help bring down TNFa significantly. And I asked her about it at my appt today. She heard of it but never used it or prescribed it before. So when I got back to work - I saw that it is avail in the US and the price of it isn't that much. I wrote to her to see if it's something we could try and she shot it down. Stating that she was unfamiliar with it and doesn't want to prescribe something she is unfamiliar with. Ok, that's respectable. I get that. BUT. Here is my issue. If something is commonly used amongst reproductive immunologists around the globe and has proven to work - and it's available here. Wouldn't you, as a doctor, do some research on the drug. Find out more about it and perhaps see if it could be helpful to your practice? She just shot it down because she didn't know much about it. But this could be a cure for me! LEARN about it - and then if you feel it's too risky - deny it. But don't just shut it down and remain naive.

Ugh. It's really frustrating when I am doing basically homework to figure all of this out for myself, but I can only go so far with it because another person who could help - doesn't care to do any research to help. Sometimes I wish I could find a new Dr. but there are very few in the area - and I don't want to go down another long twisted road when I have already gone so far with this one.

Anyway, so I have to now go to a consultation tomorrow with a Dr. to discuss Endometriosis laproscopy. I am nervous for that. I don't feel comfortable with someone poking around in that area. But I guess it needs to be done so I will do what I have to do. So we will see how long it will take for me to even get an appt for the procedure. Shit, the consultation took 3 weeks to get! Very annoying.

So July clearly is a bust for trying again. Doubt August will be in the cards too if I don't get this surgery done right away. But I am glad that perhaps I am doing something to maybe nip this TNFa shit in the ass. Because if this can cure it - everything else should be quick to follow. But if it's not the issue...I am up a long hill battle. I will post more tomorrow when I wrap up with the Dr.

Stay tuned...

Friday, June 24, 2016

Bad news.

Well not even 5 minutes after writing the last post, I got some results back. And it's not good. My TNFa came back at 45.7 which is up from 37.1. Not good. Anything over 40 can damage egg quality they say. Clearly I am beyond disappointed. I really wanted to try again in July and now that has completely gone to shit. This has been the most frustrating ordeal I have ever experienced.

  I definitely am keeping the consultation for the Endometriosis laproscopy to see if that is what is causing the issues. I pray it is - because then I will finally have a reason. Because I am baffled as to why this is so high. It really sucks. So now, depending on when they will even schedule me in for the surgery - things are starting to get pushed back into the Aug/Sept timeframe. Which makes it 4-5 months since the LIT treatment which only lasts in your system for 9 months. Clearly time is an issue here.

  I feel like I have been gut punched. I feel like any hope to having my own child is just getting to be a dream that will never come true. I get so angry that so many women can get pregnant and enjoy their pregnancies. But I will NEVER get to have that. Even if I do get/remain pregnant - I will never enjoy it. Those entire 9 months will be lived in pure fear and worry. I won't get to joke about "no more after this!" or "This one was an accident" or even get to decide "we were only going to have one, but now we might go for another". I will be lucky if I get one.

 I am sorry. I am having a pity party for myself, and just downright sad. I am just so beat up. You can only be kicked so many times before you can no longer pick yourself up off the ground. I'm tired of getting up. I'm just so sick of it all.

  But I will pick myself up this time. And I will keep going. I have a little fight in me still, and I am going to do this for me and my husband. I cannot give up now, I have gone way too far. So I will just keep on doing what I need to do. Hopefully, someday, it will work out.

Reproductive Immunology

I stumbled upon this very interesting website regarding Reproductive Immunology. It's really informative because it describes exactly what everything is, and describes the treatments for each immune issue. For anyone who is reading this and thinking I am speaking a foreign language when I talk about immune issues or anyone who is actually GOING through immune testing...I highly suggest you read it. I have a lot of these issues and I talk about them often on here!

http://www.immunologysupport.com/treatments.html


P.S. Hopefully will get my results back today or Monday the latest! I moved my follow up with my Dr. to Tues the 28th! I am still keeping the consultation with the other doctor regarding Endometriosis - because if that is something I want to look into the future - then at least I got the consultation part out of the way, ya know?

Anyway - stay tuned for hopefully good news!

Monday, June 20, 2016

Testing...aggainn

Tomorrow will mark my final retesting of my NKCells and TH1/TH2 (to see if my TNFa has lowered). It's a big deal because this will lay down the bricks to see if I can TTC in July or not. I have several options based on what the results are.

1. I have an appt set up on June 29th for a consultation with a dr. regarding endometriosis. I want to see if I can get a laproscopy done to determine if I have it - and if so - to treat it. I have read that endometriosis can trigger inflammation which raises TNFa. So if I can find the culprit as to why my TNFa is being spiked - then maybe I can get it under control once and for all instead of just suppressing it with drugs. The cons of this is that the surgery always runs risks, and also - it will push our TTC time back to like Aug/Sept. Which is fine, but the LIT only lasts in your system for about 9 months. We are already on month 2 since the treatment. So I don't really have time to waste here.

2. If my TNFa is low enough to where it can be controlled/lowered with a shot of intralipids or sterioids, then maybe it can be suppressed enough to where it won't matter if endometriosis is an issue if I can keep it under control. Cons: drugs. Which I really don't like.

3. IVIg. This apparently is the best way to control TNFa. It resets your immune system and brings everything down. Con: EXPENSIVE. I really don't wish to spend $2500 per shot here. I mean, what if I get this damn shot - and I don't get pregnant right away! It's like tossing money down the toilet!!


So clearly you see my dilemmas. I have been taking so many supplements that I am PRAYING they will be good enough to knock it down the rest of the way naturally. My nightstand looks insane. I am on so many things! haha! I mean, the vitamins I have been taking knocked it down from 61.5 to 37.1 in a month. So it will definitely be interesting to see if it takes it down even further since my last test. I have also added some new ones in the mix so I am just praying they do the job!

Other than that...just have to wait and see. I really can't wait to try again. But I am nervous as all hell!! It's pretty scary stuff, but unfortunately, ya just have to grin and bear it in order to hopefully bring home that little rainbow. I have several virtual friends that I made online on my support forums that were in the same boat as me. Well, recurrent miscarriages, but different issues. But one just had a beautiful baby girl and the other is almost out of her scary 1st trimester! I am so happy for them, and hope that I will be next in line! We shall see how my cards play out....

Tuesday, June 7, 2016

New plans

I had my followup with my doctor last week. We went over the upcoming plans that we will need to prepare for TTC again in July. Basically, with the LIT procedure being effective, my only real obstacle that I have left is the high TNFa. I need to get that number down below 30. I have already been able to drop it down from 61.5 to 37.1 with supplements which is amazing. My doctor was really impressed - but it's not quite there. So I will keep on the supplements - even adding a few more in the cocktail - and retest everything in 2 weeks to see if there is any more improvement.

  If there is improvement - she will likely put me on intralipids to hopefully keep it down. However, she said the most effective thing to do to specifically target TNFa would be the IVIg. Which would suck because it's $2500 a shot. I feel I will have to do this regardless if it comes below 30 or not because inflammation can increase once pregnant and it can't come back up again. Sucks. '

  It's all so scary. One little thing can go wrong and boom, it's all over again. I have allowed myself 6 months to mentally prepare myself again. I gave myself a lot of time to get my mind right. While also clearly doing things to hopefully prevent it from happening again. But the thought will forever my engraved in my mind that nothing is guaranteed, and that another miscarriage is still very real and very likely. But it cannot stop me from trying again. I will do everything I can to try and prevent it. But it's just a sad fact I have to face that it just might happen again.

  Anyway, one step at a time. Right now, I am trying to eat better, exercise, and just live in the moment as best as I can. We will see where I am at in 2 weeks. From there, I will decide what the best course of action is. Baby steps. Yep. Baby steps to hopefully get baby steps one day. :)