Early Nov:
I got pretty worked up yesterday and thankfully have since calmed down. I was seriously irritated at my Birmingham nurse (and I was warned by Dr. B that this could happen) but everything ended up being OK by this morning. Because I'm working with two doctors and three clinics, this gets messy easily which turns quickly to annoyance on my part. Contact with my doc in Birmingham is very difficult and frustrating. They don't do email so I have to call and leave a detailed message with a transcription service by phone-wait for a nurse to call me back (who usually has a hard time understanding what I'm talking about)-who then has to put any request in to my RE-then calls me back when the request is approved or denied. Why I can't just email these people is beyond me. Of course, the nurse yesterday got snippy with me because she doesn't understand that I'm working with Dr. B AND my local RE. The nurse kept telling me that my RE won't give me the Metformin because my lab results do not indicate a need for it (my insulin level was a 5). I'm FULLY aware of that and told her that it's Dr. B's recommendation that I be on it for 4 weeks before IVF to help egg quality and inflammation since I have severe endometriosis. She said, "I've never heard of that." Yep, and that's exactly why I have Dr. B fighting for me and why I want to try something new. I've done IVF twice with a pretty similar protocol. Why would I continue to do the same thing again and probably get the same (negative) result?
This morning I got a call from my fav nurse (one in Montgomery and NOT Birmingham) and said that my RE agreed to the Metformin and it was already called in. FABULOUS! Man, those bad boys are HUGE. Like horse pill huge. Dr. B said that it can cause upset stomach and diarrhea. Oh fun. If I get preg, I will stay on it the entire pregnancy.
I've left another message for someone in Birmingham to call me back. I want to do IVF (the retrieval part) beginning on my next cycle...which should be the end of this month (Nov.) I need to know what the next step is and how to go about getting it done.
These next weeks are going to be all about supplements (yes I ended up ordering a endo supplement made by Dr. B-but only because I don't want to look back on this and say I could have done something more), eating super clean, and preparing my body for IVF. I need to lower oxidative stress, get rest, and continue to workout too.
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Fast forward several weeks....
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I started the Metformin slowly per Dr. B's request and guess what? No diarrhea or vomiting (yay!) but I started getting UTI like symptoms and back pain on my right side less than a week after starting the pills. NOT COOL. The symptoms would come and go and I couldn't make sense of it. I finally went to urgent care the Friday before thanksgiving and NO infection was found. NONE. He said my urine was completely clean. Well...then what was going on? That doc said he thought I had a slow moving small kidney stone. I wasn't completely convinced but he gave me an anti inflammatory (which did absolutely nothing by the way) and a med to help my ureter calm down. I was down right miserable. How could I NOT have an infection?
I had an RE appt scheduled and actually got to see my RE in person on Nov 20 locally which was wonderful (we went over an IVF check list, talked meds etc.). I asked to have my urine re-checked and NO infection was found again but my nurse practitioner noticed something was off and prescribed me an antibiotic. My urine was sent for a culture. In the mean time, I decided to google Metformin and side effects. Guess what? After some digging, the Mayo Clinic claims that a "rare" side effect is UTI like symptoms and bladder infections. Sigh...Whether or not the Metformin caused it or not is up for debate but I've stopped it and haven't gone back to it. The culture came back and yes, I did have an infection...
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I was actually half convinced I was pregnant this past cycle. I haven't even picked up an HPT for YEARS but decided to pee on a stick to check for sure. Nope, not pregnant. I was heartbroken. So many emotions come with that-anger being a big one-but after crying to DH and crying out to God we both felt a little better. I knew AF was coming and I had to refocus my thoughts on IVF.
I got AF this morning and called my local clinic for my baseline u/s and bloodwork. I was able to get an appt today within 30 mins of calling. FAB! You guys, my antral follicle count was 15! 15!!!! Even my nurse was shocked at how good that is for a 35 year old! They are cautiously optimistic for me and my doc even had semi positive words about how this is going to go.
The only bad news about the appt was that the lab tech didn't realize I was there for IVF so she drew for the wrong blood work tests. For real. I have to go back Friday for a redo.
I start birth control pills tomorrow and I'm not looking forward to it....all a part of the process I know.
Thanks for hanging in there with this long post! I'll update again soon.
Wednesday, November 28, 2018
Wednesday, November 7, 2018
Protocol:
I'm getting impatient. It's now been 10 weeks since I completed my necessary blood panels for Dr. B. I just wanted to complain...
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Today I FINALLY I received a call from his office to let me know that my blood work results are back. I've scheduled an appt with Dr. B to go over my results next week. I'm hoping I'll be able to do IVF three weeks after that appt. I've been researching possible medications that he uses for his patients. I'm not sure if you've heard of LDN (low dose naltrexsone) but that drug looks promising. I've been reading medical journals and studies on it and the results are quite interesting to say the least. It does have to be made in a compounding pharmacy so maybe that's part of the hesitation and I've learned that the FDA will not approve dosages less than 5mg (I may use either 1mg or 3mg). Here's a link to many studies showing it's benefits for treating immune issues/chronic pain/anti-inflammatory activities etc. It lowers certain cytokines and stimulates the body's own production of endorphins.
"The increase of β-endorphins to reduce pain levels is only one aspect of the use of LDN in pain management, especially when the source of the pain is related to an inflammatory process. It has been shown that LDN reduces inflammation by reducing multiple pro-inflammatory cytokines."
That could be a very helpful tool with dealing with my fibro/endo issues. Now it's more waiting to see if Dr. B prescribes it.
Other medications could include prednisone, Neupogen (which by the way is a super expensive injection typically used with cancer patients to increase white blood cell counts to fight infections), lovenox, IVIG (another massively expensive intravenous drug) and who knows what else. I'll keep you posted....
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Waiting, waiting...today is my phone appt with Dr. B...So anxious to find out my results!
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Just finished talking with Dr. B! I need to write this all out so I can try and remember it all. If you remember, I did 19 vials of bloowork that was shipped to ReproSource in MA back in August. Then I did another 7 vials (DH did too) of fasting bloodwork a week later. I've been anxiously awaiting those results...and today I got them! I have ZERO markers for immune responses. ZERO. But I did have many markers for inflammation which is consistent with endometriosis. I will be starting Metformin 750mg twice a day for four weeks beginning as soon as I can get the prescription written and filled by my local doctor. Even though I do not show symptoms relating to PCOS, Metformin has been shown to help with inflammation and egg quality for those with endo. After four weeks, I will do IVF either here in AL or go back to AZ (I have a big decision to make on that). My embryos will be frozen, then I will do Dr. B's standard immune protocol consisting of Prednisone, Lovenox, and intralipid therapy for the transfer. Basically, this is the best case scenario! He said several times today that I should have no problem conceiving on his protocol. Music to my ears!!! It's still a much longer process that I'd like, but we are inching in the right direction.
Since I do not have any immune markers, he said I can do either a paleo diet or Mediterranean diet. I don't have to do the AIP diet and boy am I thankful for that!!
If you've been following all of this, I appreciate your kind words of encouragement more than you will ever know. You all bless the socks off me! This has not been easy at all and now that we have some more big decisions, will you be praying for us?
*****************************************
Today I FINALLY I received a call from his office to let me know that my blood work results are back. I've scheduled an appt with Dr. B to go over my results next week. I'm hoping I'll be able to do IVF three weeks after that appt. I've been researching possible medications that he uses for his patients. I'm not sure if you've heard of LDN (low dose naltrexsone) but that drug looks promising. I've been reading medical journals and studies on it and the results are quite interesting to say the least. It does have to be made in a compounding pharmacy so maybe that's part of the hesitation and I've learned that the FDA will not approve dosages less than 5mg (I may use either 1mg or 3mg). Here's a link to many studies showing it's benefits for treating immune issues/chronic pain/anti-inflammatory activities etc. It lowers certain cytokines and stimulates the body's own production of endorphins.
"The increase of β-endorphins to reduce pain levels is only one aspect of the use of LDN in pain management, especially when the source of the pain is related to an inflammatory process. It has been shown that LDN reduces inflammation by reducing multiple pro-inflammatory cytokines."
That could be a very helpful tool with dealing with my fibro/endo issues. Now it's more waiting to see if Dr. B prescribes it.
Other medications could include prednisone, Neupogen (which by the way is a super expensive injection typically used with cancer patients to increase white blood cell counts to fight infections), lovenox, IVIG (another massively expensive intravenous drug) and who knows what else. I'll keep you posted....
***************************************
Waiting, waiting...today is my phone appt with Dr. B...So anxious to find out my results!
***************************************
Just finished talking with Dr. B! I need to write this all out so I can try and remember it all. If you remember, I did 19 vials of bloowork that was shipped to ReproSource in MA back in August. Then I did another 7 vials (DH did too) of fasting bloodwork a week later. I've been anxiously awaiting those results...and today I got them! I have ZERO markers for immune responses. ZERO. But I did have many markers for inflammation which is consistent with endometriosis. I will be starting Metformin 750mg twice a day for four weeks beginning as soon as I can get the prescription written and filled by my local doctor. Even though I do not show symptoms relating to PCOS, Metformin has been shown to help with inflammation and egg quality for those with endo. After four weeks, I will do IVF either here in AL or go back to AZ (I have a big decision to make on that). My embryos will be frozen, then I will do Dr. B's standard immune protocol consisting of Prednisone, Lovenox, and intralipid therapy for the transfer. Basically, this is the best case scenario! He said several times today that I should have no problem conceiving on his protocol. Music to my ears!!! It's still a much longer process that I'd like, but we are inching in the right direction.
Since I do not have any immune markers, he said I can do either a paleo diet or Mediterranean diet. I don't have to do the AIP diet and boy am I thankful for that!!
If you've been following all of this, I appreciate your kind words of encouragement more than you will ever know. You all bless the socks off me! This has not been easy at all and now that we have some more big decisions, will you be praying for us?
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