Wednesday, March 12, 2014

Working with multiple doctors

First of all please excuse my grammar because it sucks!

I am writing this post today in hopes that it will help others with their care and especially when under the care of a (RI) and (RE).

I knew from the moment I decided to get a second opinion last September and go see an RI that I would hit resistance. In fact I prepared for this to happen and so far I have not been let down. When you start researching Reproductive Immunology you will find many doctors that think there is no science, studies etc. to back the treatment chosen. In most cases such as mine you have many markers that are tested such as:

APS (Antiphospholipid syndrome is a disorder in which your immune system mistakenly produces antibodies against certain normal proteins in your blood. Antiphospholipid syndrome can cause blood clots to form within your arteries or veins as well as pregnancy complications, such as miscarriages and stillbirths

ANA ( The immune system makes an abundance of proteins called antibodies. Antibodies are made by white blood cells and they recognize and combat infectious organisms in the body. Sometimes these antibodies make a mistake, identifying normal, naturally-occurring proteins in our bodies as being "foreign" and dangerous. The antibodies that target “normal” proteins within the nucleus of a cell are called antinuclear antibodies (ANA). ANAs could signal the body to begin attacking itself which can lead to autoimmune diseases, including lupus, scleroderma, Sjögren's syndrome, polymyositis/ dermatomyositis, mixed connective tissue disease, drug-induced lupus, and autoimmune hepatitis. A positive ANA can also be seen in juvenile arthritis.

MTHFR ( The MTHFR gene provides instructions for making an enzyme called methylenetetrahydrofolate reductase. This enzyme plays a role in processing amino acids, the building blocks of proteins. Methylenetetrahydrofolate reductase is important for a chemical reaction involving forms of the B-vitamin folate (also called folic acid or vitamin B9). Specifically, this enzyme converts 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate. This reaction is required for the multistep process that converts the amino acid homocysteine to another amino acid, methionine. The body uses methionine to make proteins and other important compounds.

There are many others, but these are the main things tested. Blood flow is also another huge component in re current miscarriages.

After seeing Dr. Kim in September, I was put on a specific protocol that ALL my other doctors were against and told me that they thought the treatment had absolutely NO basis. I was told by one doctor that my medications were completely uncalled for and " In her experience all reproductive immunologist through every single treatment at you at once and that is the reason for success. They don't know exactly what is helping because you are on every medication possible" Is this true? For all of you out there struggling right now, would you care if you were taking every medication possible to get pregnant and it worked? For me it doesn't really matter.

Well lets get back to my protocol by Dr. Kim.
Daily lovenox injections
Daily steroids
IVIG (donor plasma infusions) now twice a week
many vitamins

A complete panel of expensive bloodwork to be sent over night every four weeks to her office. Once pregnant it is done every two weeks. The blood tests you have done while under the care of an RI is crazy. There is absolutely no other way of putting it. Of course you are on some serious medications and do need to be closely monitored.

Which brings me to today:

I went in for beta #2 this morning. I thought it was weird when one of the RN's who usually works with ivf patients called me back into the room. She started off by reading the orders from Dr. Kim and asking who exactly was managing my care? She then went on to tell me how all of these tests that Dr. K wants makes absolutely no sense and she doesn't see what exact information is to be seen out of them. They feel that I am being taken advantage of for money and hopes that is not the case. One thing I have learned after all these years of treatment is..............I ADVOCATE FOR ME. This sometimes doesn't work with what the doctors think is the best option, but I am past that point. I do like my RE office and it is filled with sweet and caring people, but after failed ivfs, and iuis, they weren't getting anything accomplished. Does this new treatment work? That is still up in the air, but at this point I will give it as much of a chance as I did treatment through my current RE. I do know this for sure, I will get the treatment and care I need. I don't care if it comes from one doctor, two doctors or more. I don't care if they don't agree with each other. I am paying all of them and they will work with me. This is one thing that you have to realize. Research, educate and always stand up for your own care. As much as the doctors want to help, they will never care as much about your health as you do. Don't be afraid to disagree, don't be afraid to get other opinions and even if they are questionable to your current care provider. Do whatever it takes to get the help you need.

Is Dr. Kims treatment plan a lot? Is it overkill? Yeah it probably is, but that is something I am willing to pay extra for and accept. At the end of the day, that is all that matters.

Beta #2 results later today. My wondfo was lighter this morning and FRER was the same as yesterday. This could go either way today.


  1. After switching clinics (and continuing to use my existing clinic as a satellite clinic), I get this. They make you doubt things, even when you know you're on the right path. My satellite clinic has a nurse that has asked me more than once "If I'm happy with them?" or "Why are they asking for that?", with a little bit of an annoying tone in her voice.

    I responded that yes, I think they are at the top of their game, but like anything there's just another human at the other end - so no, things aren't perfect. I don't want to insult them by telling them the many reasons why I prefer my new clinic, but if I face many more questions, I may just enlighten them.

    Good luck on your beta today. I'll be looking for your results! Fingers crossed for both of us.

    1. Have you already had your blood drawn this morning?? Good luck!!

  2. My wondfo's started getting lighter around this same time too. I was freaked out. I hope yours are getting lighter for the same reason mine did(because the HCG was getting too high). Keeping my fingers crossed for you, I can't wait to hear what the Beta is. Also, way to be a rockstar and advocate for yourself, I really admire that about you!

  3. You are you're own advocate. That us ALWAYS my motto. I tell the doctors that when they seem annoyed by my questioning or information seeking. You are a well educated person who knows what she needs or doesn't need and you are aware of what Dr. Kim is doing. If you are comfortable with that then THAT is all that matters.

    My hopes are still sky high for you beta today. Best of luck Toni. You deserve this. No really. You do.

  4. Sounds so familiar! I was met with so much resistance for seeking treatment through a RI. I was warned that Dr. B was only going to take my money. Well, he did take my money but he also got me pregnant. My RE's office was just taking my money. In the end, it was the right decision.

  5. Absolutely agree with this. Too often, people defer to their doctors regarding their care. The thing is, even though they have years of schooling behind them, doctors are also operating solely on what they know and believe. Hence it's important to be your own advocate and push for what you need. Because at the end of the day, you are the one that has to live with these decisions, not them. And the worst they can do is refuse to work with you.

    Fingers crossed for today!!

  6. I feel like I need to get my inner T going when I need to be my own advocate. I am a strong willed woman but for some reason when it comes to doctors I bend over. I'm hoping for nothing but great news from today!

  7. It is so exhausting going through the process of researching and getting opinions, and fighting...not only to understand what you really feel in your heart is the best option, but then to also find a way to receive the care you think will help. So many doctors disagree in this field especially, and it can get pretty complex! We aren't doctors, but we know our bodies better than anyone else.

    I have all 3 of those winners you listed above plus some additional crapola like +NK cells, and had to advocate multiple times to get on Lovenox (which I got from a hemo) and then practically had to kung fu fight my RE for a steroid script....after getting NK testing elsewhere and continuing to hound him with test results, questions, research to get the protocol I thought could help. I so get it, and you have done all you can for sure!

    Fingers crossed for a great second beta! You certainly deserve for this all to work out finally, and I'm pulling for you bigtime!

  8. Way to be an advocate! Praying your number is very high! I'm going to guess 780. :-)
    I hope your infusion goes well too!

  9. I've been through this exact same thing with two different REs. Both of them think I'm crazy but I don't care. I will do whatever I want in order to make this the best possible chance of carrying and delivering and like you said if it's overkill, who cares? So far in seven years it's been "underkill." haha! And just so you know, I did my immunological medications on the sly. Hope he doesn't read this comment.;) I felt I had no choice since he wasn't on board. What he doesn't know won't hurt him right?