Showing posts with label more tests. Show all posts
Showing posts with label more tests. Show all posts

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. :)

Tuesday, May 31, 2016

Results!

Got some great news today! I received the results for my LIT treatment as well as my updated TNFa tests, and LIT worked!! My numbers look amazing!


                                               LIT treatment before (top) and after (bottom)


Needless to say there have been some major improvements here. I will start with the LIT. The most important aspect of this test apparently are the B-Cells IgG. Specialists say they prefer this number to be above 50% and anything less than 30% can lead to miscarriages. Clearly, mine were insanely low at 1% before the LIT treatment. Which means my body wasn't producing any protective antibodies when pregnant to help protect the embryo from my insanely active immune system. So in turn, my body was attacking the embryo and viewing it as a foreign object. Now my numbers are 99.9% which means I have developed the antibodies needed to protect the embryo for future pregnancies! Amazing news!! You can see the test went from negative to positive! So I am naturally ecstatic over these results! Those trips to Canada were not for nothing and I am excited to see if this will really be the difference we needed!


                                     TH1/TH2 (TNFa results) before (top) and afrer (bottom)



Now on to this other important test. As you can see my before numbers were off the charts high at 61.5%. They say anything above 40% can damage eggs and anything over 30% can cause miscarriage. So I have been taking the natural supplements (3 grams of omega daily, 1200mg of NAC daily, 100mg pine bark, and 600mg Reservatrol daily). I was on these supplements for probably a month before I retested and I am really happy to see that the tests came back much lower. Now it's still in the high zone...we need to get this below 30 before I can start trying again. But I feel now with neupogen or humira - that it will help get this down where it needs to be. I don't understand why my TNFa is so high to begin with. They say it can be flared by Rheumatoid Arthritis, Endometriosis, or Crohn's disease. I wouldn't be shocked if I had Endo. I have always had painful periods so it wouldn't surprise me. It also wouldn't shock me if I have Rheumatoid Arthritis. My mom has that so it very well could be inherited. Whatever it is, I am glad my body is responding well with the natural supplements. And hopefully more specific medication for this issue can knock it down under 30.

  I have my followup with my doctor on June 2nd to go over everything. I want to begin trying again in July - so we have a month to get this all situated. But I am really optimistic for the future now and eager to see if everything works. I am still staying grounded because with my history - how could I not? Nothing is guaranteed and I can't expect that these will be my golden tickets to pregnancy. But I am so excited to finally be moving in a direction!! :)








Thursday, March 3, 2016

LIT appointments scheduled!

Well, all systems are go! We have our LIT appointments in Canada scheduled! 1st round will be on March 21st and second will be 3 weeks later on April 11th. I am anxious, nervous, and excited! We have to retest for the Leukocyte Antibody Detection test 3 weeks after the 2nd procedure to see if it worked. God I hope so! I'm still waiting to hear back from the dr. I went to on Monday to determine if the IVIg is covered. If not we will definitely be getting the intralipids and steroids combo to coattack my immune system with the LIT.

If all works as planned - we can begin trying again in May. :)

Monday, February 29, 2016

Annnd more tests.

Just got back from the Hematologist and he basically agreed with my fertility dr that the high TNF's are the culprit. He took some more tests to look into a few more things and perhaps build a case to my insurance company to cover the IVIg shots to help suppress my immune system. If they can get that covered, that would be our best option. If they cannot, then we are looking into the intralipid/steroid option.

  We are still gathering our blood work panel for the Canadian clinic to have for our upcoming trip. I only have two more to do, husband has three. Hopefully we can get all of that done this week. I should have the results for todays labs this week as well. Hopefully things will all start coming together so we can formulate a solid plan. The estimation of when I plan to try again will be April. There just isn't enough time in March to get all of this sorted, so April should be a solid go for us.

 What a crazy ride this has been, but to finally be able to see a shed of light at the end of the tunnel is scary, but inspiring.

Wednesday, February 24, 2016

Decisions

So now we know what we are up against. I have a huge battle to face and several roads to take. Deciding which one is what I need to do. I spoke with my husband last night and he is willing to join me on a Canadian adventure to try and do the LIT procedure. My doctor says this procedure is 100% proven to help work and is our best shot. So I guess it's kinda a no brainer as to what we have to do. Canada is fortunately only 9 hrs away. And I would MUCH rather go there vs Mexico. So I put in an email and phone call to try and get that ball rolling. I have to determine the cost and whatnot.

  Our second thing to do is go to the Oncologist on Monday to determine what he can do for us. If he can code this in a way to where my insurance will cover the medicine, that would be fantastic! Because with both LIT and the Infusions, I think we have a great shot. (no pun intended). Nothing is set in stone and we have a lot of fears, risks, and anxiety about it all. It's pretty scary stuff. Messing with your immune system can open the doors for things you may not want. It takes a perfect cocktail of medicine to not fuck things up. I am confident in my dr.'s abilities to dose everything correctly, but it still is kind of playing with fire. Sure my immune system is in overdrive right now, but I certainly don't want to start getting illnesses and whatnot because I lowered it too much. So it's a risky thing to do.

  Another concern about this hyperactive immune system is that there may be an underlining issue going on. Rheumatoid Arthritis, Cancer, Endometriosis, some type of inflammation which could cause it to be in overdrive. Which scares me as well. I don't know, it's all so friggen crazy. I haven't been sick in 2 years and my doctor says this is why. You would think that would be a great thing, but to be honest, and I never thought I would say this, I kinda wish I would just get a cold! lol Something to tell me that my body is back to normal!

  I am trying to be optimistic about everything, but with the odds so stacked against me, it's really hard. Maybe I truly am just not meant to have kids? My sweet sister said as a last resort - I could consider her for surrogacy. Which honestly, would be my best option. But I don't want to ask that of her. I don't want to put her through all of that. On top of that, she has had to get c-sections for both of her past pregnancies which means she would have to get another one for mine. And that's just awful. So I just don't think that route is really desirable for either of us. Plus, I think her husband is a little weirded out by the idea. Can't say I blame him...but it's probably the most selfless thing to do for someone that I can think of. And I know she would do anything for me. And if the shoe was on the other foot....I would do it for her no questions asked. It's just what you do for the ones you love I suppose.

But hopefully we can get all of this sorted so it will never even come to that. I want to carry my own child. I want to experience pregnancy, I want to go through everything it requires - the good and the bad. I want to have my own kid. I just pray I can.

Tuesday, February 23, 2016

Lifes Lemons





    I finally had my followup with my dr. today. Can't say the news is great, but not surprising. As I determined earlier, definitely NKCell elevation going on. My bodies immune system is in hyper mode. It's attacking anything and everything it see's foreign. Which normally would be a great thing I suppose. Not when you are trying to get pregnant. My body is looking at my husbands cells as foreign and immediately attacking our embryo. Basically, I don't have a shot in hell maintaining a pregnancy right now until I get this under control. I have an appt with an Oncologist that works with my doctor regarding immunology and blood related issues. He hopefully will look at my labs and perhaps be able to code all of this a certain way to where perhaps my insurance will cover it (if he codes it unrelated to infertility). I am hoping that will happen, it will make the punch more of a slap. I am also strongly considering traveling to Canada and doing LIT as well. It's only a 9hr drive and I hear the success rates are really great. I'm willing to take that risk. So that's basically it. I am up shits creek and I have a long road ahead of me. It's financially draining and my emotions are at their peak. I don't know if all of this will even work out in the end. Right now I am very overwhelmed.

OH OH, to add insult to injury, I have yet ANOTHER blood clotting issue. Factor VIII. So lovenox will ALWAYS be in my remedies. Baby aspirin will always be apart of my daily life permanently as well. Yay.

  Here are my options. All which will cost a fortune.

Option 1: LIT. It is not FDA approved, which means I would have to travel to Mexico or Canada to seek treatment. My doctor said it will cost roughly $500 - which isn't bad...but I will have to have additional treatment as well which could be costly. LIT basically is: Lymphocyte immunotherapy involves the injection of your partner’s white blood cells into your forearm, allowing your body’s immune system to develop an antibody response to his cells. That way, when an embryo is later transferred, your body may be able to recognize it and won’t reject it. 

Option 2: Intravenous immunoglobulin (IVIg)


IVIg is made from antibodies and is usually given by intravenous drip as a treatment for immune deficiencies and autoimmune diseases.
A recent review of several clinical trials found that IVIg treatment did not increase IVF success rates. Another similar review recommended that IVIg for recurrent miscarriage should not be offered unless it is done as part of a clinical trial.
IVIg carries varied and sometimes unpredictable risks. Side effects are rare but can include headache, muscle pain, fever, chills, low back pain, thrombosis (blood clots), kidney failure and anaphylaxis (a bad reaction to the drug). 
It is also possible that, antibodies from IVIg may cross the placenta into the bloodstream of the fetus during pregnancy, where they might react against some of the baby’s cells. However, this has not been seen in practice.
Option 3TNF-a blocking agents
Tumour necrosis factor (TNF) is a chemical produced by immune system cells, such as NK cells, which help immune cells get to the source of infections by promoting inflammation. Drugs which block the effect of TNF (known as TNF- blocking agents) are routinely used in the treatment of arthritis, asthma and other immune disorders. They stop inflammation but make the attack on infection less effective.
Several clinics offer the use of TNF- blocking agents (Enovel, Remicade and Humira). However, there are risks:
  • Remicade may increase the risk of septicaemia, chronic infections such as tuberculosis, cancer of the lymphatic system, liver problems, white blood cell disorders and strong reactions to the drug..
  • Medicine specialists say that Remicade should not be used in pregnancy.
  • Humira is not licensed for use in implantation failure (when the embryo fails to embed itself in the lining of the womb). Its effects on reproduction and fetal development are unknown.
Intralipid infusions
Intralipid infusions are a sterile fat emulsion, containing soybean oil, egg yolk, glycerin and water, which is administered by injection.
In April 2015 the Royal College of Obstetricians and Gynaecologists said that there is no rationale for the use of intralipid infusions in fertility treatment. There are no published randomised controlled trials assessing its efficacy.’
The risks associated with the use of intralipid infusions:
  • severe sepsis (also known as blood poisoning) - this is a potentially life-threatening condition in which the body’s immune system goes into overdrive. This can reduce the flow of blood to vital organs, such as the brain and heart. Three women have developed severe sepsis following administration of intravenous intralipid infusions. This is believed to be as a result of poor practice in the administration leading to contamination of the product.
  • hypercoagulation – this is excessive blood clotting, which can result in blood clots forming inside blood vessels. This can be dangerous, increasing the risk of deep vein thrombosis, stroke and miscarriage.
Also - Steroids
Corticosteroids are a type of drug that can suppress immune responses, and are routinely used in the treatment of arthritis, asthma and other autoimmune disorders.
There is no proven advantage in using steroids in the first three months of pregnancy, and the risks to you and your baby outweigh any possible benefits. Medical guidelines recommend that pregnant women avoid all drugs at this stage unless they are likely to benefit your health.
A clinical trial in Canada tested the effect of giving pregnant women who had previously suffered two or more unexplained miscarriages a corticosteroid called prednisone. The study found that prednisone didn’t prevent miscarriage, and increased the risk of high blood pressure, diabetes and premature birth.


(sorry for the crazy different fonts, I copied and pasted most of that and the fonts got all screwy)









Wednesday, February 17, 2016

Thoughts on results

So I FINALLY got *some* of my results back. I am still waiting for 2 other panels as well as my husbands results as well. But this panel that I just received was kind of a bombshell. My nurse was nice enough to send me the report so I can do some of my own interpretations and research before my consultation with my doctor on Tues to go over everything in much greater detail. But she knows how impatient and stressed I am - so I can't thank her enough for allowing me to go ahead and do some research for peace of mind.

  With that said, through my research on good ol' google...I believe we have found our culprit. Nevermind the tests which levels came back a little out of range...my focus mainly is the TH1/TH2 results. My levels for the TNFa were INSANELY high. And after researching what that means - well as you read below - it isn't good. Basically my body is acting as if the embryo is a foreign object and getting rid of it. If what I researched is truly accurate - this would ALL MAKE SO MUCH SENSE to me. It would explain the chemical pregnancies. It would explain just so much! Because my issue was never the fact that I couldn't get pregnant - it was that it would never stick! And after every test that I've had - this would make the most sense. My body is attacking it! My immune system is through the roof! Probably would explain why I haven't even had a common cold in almost 2 years!! Not even lying!! I tried to remember the last time I was even sick! I believe it was the beginning of 2014! Crazy!

  I am not totally sure that helped play a part as to why I haven't been sick in a long time - but a hyperactive immune system would surely be a good clue as to why. Anyway...I am feeling very relieved. Not that there is something seriously wrong here - trust me - it sucks I have these issues and I hate that there are problems with my body. BUT. It gives me answers. AND. it's treatable!! I don't want to get ahead of myself here. This is only what google has told me. I can't sit here and play doctor and diagnose/treat myself. I have to wait to see what my doctor says about it all. Her professional and medical interpretation of it all. And as I feel that this is what is going on - she may surprise me with something entirely different. Could be worse news, could be positive. I will just have to wait and see on tuesday.

  Anyway, there are also some conflicting results like low NKCell count but high TNF. I'm not sure what that means or why. More questions for the dr. I suppose. Leave it to my body, I've always been a walking contradiction! lol

But for now...I am happy that at least we are getting some answers!! Answers that I truly believe will help make this nightmare go away!! I have found a newfound excitment I haven't felt in a while. Hope. I am trying to do what my nurse told me to do. Stay grounded, don't get scared/nervous/excited UNTIL you talk to the doctor. Take everything google has to say with a huge grain of salt. So I will focus on doing that. There could be a million other things that are wrong that I don't even know about. So I just have to keep waiting and talk to my doctor.

But man, I really hope and feel that we are making some ground here. I finally think we are on the right track.

Some test results (finally)

So here are some results from my autoimmune testing I recently did. I think we may have found the culprit for my losses. Please read below and I will write another post on my thoughts:

 
Test: CD-3 (Pan T-Cells) 

Normal levels: 63-86% 
My level: 90.0 (High)
What it means:

These cells are the most important in our immune system. They are low when the immune system is weak (suppressed) and normal when the immune system is healthy. Infertile patients and patients with recurrent pregnancy losses have values in the high normal range. These individuals have immune systems that are strong - even overactive. A strong overactive immune system is associated with a 5% incidence of autoimmune diseases for example, thyroiditis, lupus, rheumatoid arthritis. 

Test: CD-8 (T-Cytotoxic-Suppressors) 
Normal Levels17-35% 
My levels: 37.8 (High)
What it means: 
These cells are the referees of the Pan T and the T Helper interactions. They coordinate how strongly or how weakly the immune system reacts. In women with miscarriage and or infertility these cells are often on the low side. "They get tired arbitrating the hyperactive Pan T cells and the T Helpers." They are rarely high. 

CD56+ CD16+ Natural Killer Cells 
Normal Levels: 3-12% 
My Levels: 1.0 (Low)
What it means: 
Natural Killer cells of this type are produced in the bone marrow and these cells produce a chemotherapy molecule called TNF (Tumor Necrosis Factor). This molecule is involved in eliminating cancer cells that may develop in normal individuals. Tumor Necrosis Factor also causes joint damage in women with rheumatoid arthritis. These Natural Killer cells are often elevated in women with infertility and recurrent miscarriage. The Tumor Necrosis Factor produced by these cells kills the rapidly dividing cells of the embryo and placenta often resulting in IVF or GIFT failure, blighted ovum or a chemical pregnancy where the BhCG elevates slightly and then quickly returns to non-pregnant levels. Normal levels for this cell population are 3-12%. The CD 56 and the CD16 molecules on the surface of these cells are special glue (adhesion) molecules that allow the Natural Killer Cells to attach to cancer, placental and embryonic cells. Once glued to the placental cell, it sprays Tumor Necrosis Factor on the cell and kills it. 


TH1/TH2 Intracellular Cytokine Ratios:
Normal Levels: 
TNF-a:IL-10 (CD3+CD4+) 13.2-30.6
IFN-G:IL-10 (CD3+CD4+) 5.8-20.5
My levels: 
TNF-a:IL-10 (CD3+CD4+) 61.5 (High)
IFN-G:IL-10 (CD3+CD4+) 17.0 (normal)
What it means:
This is a ratio between two groups of chemicals in the body. The TH1 cytokines are defensive and include TNFα and IFNɤ. The TH2 cytokines including IL10 and others calm down the immune system and promote immune tolerance particularly during pregnancy so that the mother’s body will allow the embryos to implant and the pregnancy to be stable.

The defensive cytokines are important as well. They defend the body against bacteria, viruses and cancer changes. Normally during pregnancy, the ratio shifts towards TH2 to maintain the pregnancy. If the ratio is deviated significantly toward the defensive cytokines (TH1), the chances of conceiving become less and the risk of miscarriage becomes high. Th1 cytokine dominance will make the environment inside the uterus hostile to the embryos and the pregnancy. This damages the endometrium, and its receptivity. Additionally, it can also damage the embryos and make their chances of implantation much lower.

High TNFα can damage the eggs before they are released from the ovaries. It is imperative to bring the level down and keep it down for a couple of months before you try for pregnancy. The eggs that develop in the first two weeks of the cycle would have started to wake up from a long dormant phase over the previous two to three months, and it is important to wake up in a healthy environment to avoid the potential damage.


Increased ratio of TNFα is treated with TNFα antagonists e.g. humira in the form of two injections two weeks apart, and retest 7-10 days later. If the levels are not low enough, it is advised to have a further course of two injections. Usually it is supplemented with a second course and a drip of intralipids to boost the effect. Of course, not everyone will respond to TNFα antagonists adequately. However, the effect can be boosted with steroids and intralipids. Additionally, you might need IVIg early in pregnancy if you still have high TNFα



Tuesday, February 9, 2016

NK Cell testing...check!

Well yesterday my husband and I went in to get our blood taken for the NKCell assay. I guess she needed my husbands blood too so they can run ours next to each other to see how my immune system reacts with his. I had to get 7 vials of blood taken and man, what a process. I hadn't had any water to drink that morning since all I was sipping on was coffee. Well apparently it caused my blood to come out veerrryy slowly. Just dripping in one little plop at a time. That NEVER happens. Usually its like a damn waterfall! Oddly enough, same thing happened to my husband as well! Made me wonder if the girl was doing it accurately.

  Either way, we managed to get enough to send off for testing, so now we will wait til hopefully the end of this week to learn the results. I just want answers and I am praying that this will provide us with some. I am sure we are out this month to try again, since even though we will have the results at the end of this week (hopefully) we still need to go back in to see the dr. and make the gameplan. I expect I will be ovulating late this weekend (sunday or monday if it is on schedule) so I am positive that won't give us enough time to get things in order for this month. So next month we will hopefully be good to go with a new plan!

  I do know she wants me to start lovenox on day 6 of my cycle instead of after ovulation. And if my NKCells are elevated, then we will be doing steroids and other infusions as well. That medication is going to cost around 5k I believe. Hopefully my insurance will help pick up the tab, but since it's fertility related - that's highly doubtful. What's even more discouraging is who knows if it will even work! So that may be 5k I am just flushing down the toilet. Man I really need to win the lottery. I am slowly sinking and sinking further in debt. :(

  Anyway, well I will keep updating as I learn more. In the meantime, I am going to do my best to keep my head from spinning this week while I wait for the results!

Wednesday, January 6, 2016

More Tests

I went to the doctor yesterday to discuss what my options were from here. When I walked into her office, she gave me a sad look and said she was sorry. Then from there, she got right down to business and I kind of felt the way she was speaking to me, it was if she is really taking me seriously now. Not to say she didn't before, but this time she was very direct. I think her, being a fertility specialist, letting her patient suffer another miscarriage really got to her. She is supposed to be there to help, and it happened now under her care. I don't think that sat well with her.

  So she told me that she re-reviewed my entire file (which was starting to look more like the size of an encyclopedia) and felt she was 90% sure of the cause of all of this. She stated that NK Cells were never tested on me, because she felt that my blood clotting disorders were big enough that with the treatment of Lovenox, that, that would be the cure. She apologized for being wrong, and stated clearly that this is a lot bigger and more serious than that.

  NK Cells, aka "Natural Killer Cells" are cells that help fight off infections and cancer type cells in your body. Everyone has them and they typically are a great thing. However, they can formulate in an excessive amount in some women, which in turn, if she gets pregnant, they recognize the embryo as a foreign object and instantly start attacking it. My doctor feels that I could potentially have an increased about of these cells and that is what is happening to me, and would explain why most of my miscarriages happen so early on. My body rejects it before they even realize that this is actually a good thing! Just add it to the list of things that are wrong with me. Well, potentially anyway.

  Her being 90% sure is comforting, because there is a cure for this. I will be boosted up with steroids and other hormones to help suppress my immune system so these cells don't go on attack. However, if these results come back normal, and I don't have this issue, then we will most likely have to chalk everything up to simply bad eggs. Which is crazy since I have a great AMH level and my FSH level was great too! I'm only 37, so to have bad egg, after bad egg is a little nuts to fathom. There has to be ONE good egg in there for heavens sake!! I don't drink, smoke, do drugs, eat relatively good. I mean, cmon!!

  Also - I saved the gestational sac from my miscarriage when I passed it, and gave it to them to send off for testing. That too will let us know if this was chromosomal or not. If they can hopefully use it and it's a good sample to test on. I will know those results in a couple of weeks.

  So now, the gameplan. The NEW gameplan. I have to wait 1 cycle and have a regular period. I cannot get pregnant during this time so I have to be super careful with the husband. After my regular period comes at the end of this cycle, I will then go in for the full immunity panel. They will test everything and anything that has to do with my immune system. From there, really depends on the results. If my levels come back elevated, then we will proceed with the steroid cocktail. I will still have to do lovenox injections, only I will start them on cycle day 6 along with baby aspirin.

                                                                IF
 these results come back negative, and my immunity is fine, then we will have to start looking into IVF. That way they can take a few eggs, study them to make sure they are viable before injecting the lab created embryo back in me. I really do not want to go down this route - since it's super expensive....but if I have no other choice, then so be it. It's what we will do. But I am praying that my answer will fall with the NK Cells and that we can cure this and move on naturally.

  In the meantime, I am just going to take this little break I have from the baby making nonsense and get my mind, body and soul back on track. I really could use the break, even though I want to just go-go-go all of the time. Now I am being forced to wait...so might as well take advantage of it.

  I played powerball for the 500 Mil jackpot. I figure, my odds that all of this going on with me is 1 in every 100 women. So why can't I be 1 in 292 million for the lucky numbers?! haha! ;)