Best resource to educate yourself on treatment options?

[milletpuff]

I'm going to set up a meeting with my RE to talk about treatment options. My RE appts go SO FAST and I want to educate myself as much as possible on the options before the appt so I can get the most out of it.

We just did our first Clomid cycle (and it worked...for about three days) but due to logistic factors, I don't have the time/energy/money for the standard "3 Clomid, then 3 injectibles, then IVF" or whatever path!

I've got one book that lays out all the options, but it's not really focused on that and I know there are better ones out there. Any suggestions? I'm looking for something that will lay out differences between different drugs (side effects, effectiveness etc) and what to ask my RE about my particular case.

Thanks!

[indigoscot]

first, hugs to you on your latest loss.

as i see it, there are several options:

1. clomid or femara (basically do the same thing although femara is said to have less of a negative effect on the uterine lining)
2. injectibles
3. ivf

since you've already been through a clomid cycle you know what to expect from that - small chance of multiples, helps mature the follicle or follicle(s) so they are better quality, some minor side effects. more REs don't recommend more than 6 cycles on it because of the cumulative effect on the lining. ours will only do 3 before moving to injectibles.

injectibles are a LOT more expensive than clomid or femara, unless you have rockstar insurance that is picking up the tab. i think one dose of follistim is around $120? there is a much bigger chance of multiples and ohss when using these. ethical REs will not allow you to trigger if there are more than 4 follicles but i've seen it before where they have allowed women to trigger with 7 or more if they will agree to selective reduction - not something i believe in but each to their own i guess.

ivf is extremely expensive. there are shared risk programs where you pay $25k and get a refund if there's no baby after 3 cycles. at our RE i think one cycle costs $12k and that doesn't cover all the drugs. there is a better chance of getting pregnant and techniques such as icsi and pgd can be used to ensure the egg gets fertilized and that there are no genetic issues. there is a bigger chance of multiples, again depending on how many embryos your RE is willing to put back. using injectibles always comes with the chance of ohss.

if i were in your shoes, i would want some answers as to why i'd been pregnant twice and m/c both times - there are some very easy blood tests that can be run to see if you have any m/c factors. the common ones are: factor v leiden, mthfr, apa, nk cells. i'm sure your RE knows what i'm talking about and could order the entire panel. fwiw, dp and i both have factor v leiden hetero and she has mthfr A1298C hetero. these are not extremely bad m/c issues but enough that we both took a baby aspirin when ttc and dp had to take extra folic acid. we had no idea we had these issues.

i would also ask (if you don't know already) what mm your lining was prior to insemming.

if you haven't already, get cd3 bloodwork done - fsh, estrogen, lh, prolactin. also have your thyroid tested. many women are hypothyroid and don't know it. what else? progesterone testing? this is done at 7dpo. some REs will go ahead and prescribe progesterone supplements as part of their protocol.

AND so that your RE doesn't rush through the appt before you have a chance to ask any questions make sure to mention at the beginning that you have some questions and write them down before you get there! we did this with our RE and she was happy to answer them.

phew, that was a long reply!! good luck!

g

[milletpuff]

WOW, thanks for such a great and detailed reply Indigo!! So I guess I have a dumb question that I didn't realize I had until you posted: are injectibles the same as a trigger shot? I feel like I'm seem people post about doing Clomid + [something] + trigger shot?

I'm going to ask about loss testing - this latest was a chemical and my other one was early too, and they don't typically test until 3 but I think that has more to do with the fact that insurance won't cover it till then. We pay out of pocket for everything, so they *will* test if we want, but I still have to find out how much it is.

We the some cd3 tests, but my RE said he'd decide what to test after looking at my ovaries (on cd3). I had ~9 follicles on each side so he decided not to test my FSH. We did do thyroid and prolactin though. I don't really get why he didn't do FSH and we never even brought up LH or the 7dpo progeterone test.

I'm TOTALLY not only writing down my questions, but bringing my partner AND I'm going to email my questions ahead of time because sometimes I feel bad "taking up so much time" and I decide not to ask some stuff at the last minute.

THANK YOU

[indigoscot]

you're welcome! the trigger shot is different from injectibles - the injectibles are fsh to make the follicles grow and the trigger shot (basically hcg which is almost the same as lh just that hcg has an extra beta subunit) makes the follicles pop. that is why when you have a trigger shot the RE doesn't want you to take an hpt because it could be a false positive.

the trigger shot is most excellent for timing insems. dp and i both had them.

great plan on asking questions! i think we all feel weird about asking questions when at the end of the day it's your body and your $$$$! i hope you manage to get some answers and don't feel afraid to push for what you want. i have said many times that ds1 would not be here if i hadn't put my foot down!!

g

[BunnyLullabye]

I'd also want the full 3 day hormone panel. Do you have insurance at all? I like my doctor pretty well. You kind of have to push him and think of some things on your own, but most of the time he is cooperative in ordering tests and prescribing meds and sometimes he comes up with something I hadn't already thought of. His specialty is "functional medicine" and he likes to treat people with ongoing issues, not be a primary care doctor. If you ask I'm pretty sure he'd run a full thyroid panel including Free T4, Free T3 and antibodies (and possibly even reverse T3 if he thinks it may be relevant). The TSH test alone is completely useless and broken.

Also if you have any insurance at all you can get a lot of stuff covered by coding as dysmenorhea or something like that. I have *horrible* cramps so it's not at all a stretch that my docturs usually code everything as that or thyroid stuff I think.

I think part of what you may want to be tested for is just things that you may have symptoms for. Like I was pretty sure I was insulin resistant (I was right) so I pushed hard for that test. I pushed doctors for hormone and thyroid tests for 12 years before I finally found one to do the *right* tests and confirm what I knew about that too (Hashimoto's and low progesterone).

And there are some things you can do like Indigo was saying, which probably can't hurt whether or not you get the tests done. Like taking a bab aspirin, and extra folic acid. I've also read that the RDA for folic acid pretty much covers you for *one* baby, so if you end up with multiples you need to be taking at least 1 per baby (I take 3 or 4 a day just in case). I might also try to persaude someone into prescribing you Prednisone or Dexamethason (pre O) and Prednisone (post O) if you think you may have immune issues. I have asthma so a bunch of my doctors have given me scripts over the years for Prednisone to have on hand in case of emergencies, so I'm taking 10mg a day pre O and 20 mg post O. Irritatingly none of my doctors wanted to actually prescribe the Prednisone to me *for* immune issues while TTC, yet none of them blinked and a couple have said it's a good idea when I later told them I'm taking it lol.

I also went to a hematologist and he ran a ton of blood tests. He didn't test everything that can cause loss (since I've never had anyone implant) but he ran everything and insurance covered it all that could be related to painful periods and some other symptoms I have.

Also I was shocked to find out that my insurance, which only covers "infertility diagnostics" (which is sort of a misnomer I think, since they won't cover a semen analysis!) actually DOES cover injectibles! I had all of my meds for both IVF's covered. I think it's not impossible that my pharmacist may be a miracle worker though hehe, I'm not positive if it would be covered if I'd gone anywhere else or if she's just magic. But since you're local to me, you could try going through her if you wanted too (again assuming you have any insurance that's worth trying).

[milletpuff]

My naturopath ordered free T3 and T4 and antibodis, I'll have those results on Monday. How do you test for insulin resistance? I've always supected that actually, but all the providers I've seen have told me not to worry about it. I have also suspected a progesterone issue (no CM, 11 day LP, slow temp rise) but again everyone has told me not to worry about it.

I have insurance but no infertility coverage, including diagnosis or testing, and I aked about coding it as something else (I also have painful periods) but that wouldn't work for some reason.

Is your Dr a primary care dr? I do need one of those actually.

Thank you so much for your reply!

[milletpuff]

And, PS: why do strangers on the internet take more time answering my questions than my reproductive endocrinologist? I'm not even paying you guys $350 for 45 minutes, ha! Argh, I know that's just the way it is, but it dries me nutty.

[kalamos23]

As far as the progesterone goes, a lot of REs believe that low progesterone in the LP is due to poorer eggs, as in the egg isn't as high quality so it doesn't produce as much. So they will prescribe the Clomid or Femara in the follicular phase to help the eggs mature better so that they will produce more progesterone in the luteal phase. At least that is what I've read.

[milletpuff]

Do you know wh my RE woul dhave chosen not to test progesterone or FSH? He said he'd decide whether to test FSH based on my CD3 ultrasound, and I ended up with about 9 follicles on each side, so he decided against the FSH test. But I thought the test was to tell if the eggs were any good? I mean, I could be making plenty of eggs but if they culd still be duds? Or is that unlikely?

[BunnyLullabye]

sorry, I need to make it so when I post I automatically subscribe to threads and get email updates.

I think your RE isn't testing stuff because they are hacks :-P. They did code my first visit for painful periods, even though we spent the entire time talking about our male factor infertility (and the high pressure IVF sales etc as I've said before).

My doctor is adamant that he is *not* a PCP lol, but that's pretty much what he is for me. I don't really go to him for colds or that sort of thing, but for everything else. He only takes patients with chronic health issues, but if you suspect you may have issues and want testing, I'm pretty sure he'd take you for that. If you PM me I'll give you his info (and my real name so you can say I sent you). You still have to nag him to do stuff, but eventually he'll get most stuff done without *too* much of a fight.

He will test your hormones with no problem at all, but he may want to test with saliva tests, which are the most accurate, but also expensive and not really covered by insurance. You can probably persuade him to start out with blood tests so your insurance will cover it. They always code everything for me as hypothyroid and painful periods, and I don't know what else, but insurance has always covered everything. I think if you make it clear that yes, you are having infertility issues but it's also imporant to you to find out the underlying health issues, they will be cooperative on coding.

The insulin resistance, first I had my midwife order a fasting blood glucose, which showed me as slightly hypoglycemic. Then my doctor ordered a c-peptide and that's what I guess was used to determine that I'm insulin resistant. It's interesting, I used to be able to not eat for ages, like not till dinner, without even noticing. Now since the metformin I get queasy and miserable if I go a few hours without eating. Which I guess is actually a more normal reaction lol.

I think progesterone can be low regardless of egg quality. I know for me, mine has been low for years and even with meds it's still on the lower end. Yet my RE said I had great quality (and quantity) eggs, and both times all but 1 fertilized!

For thyroid stuff there is a good yahoogroup - naturalthyroidhormones (go to www.yahoogroups.com and search for that). They helped me with all the basics and they can help you interpret your test results.

[milletpuff]

Thanks!! I got my test results back from the naturopath and my TSH was 4.4. So I am now on meds, as of this morning. How did it get to 4.4 from the 2.5 value we got when we tested at ORM in May? Jeez.