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Clomid Challenge?

May 12 2010 at 11:17 PM
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ncfp  (Login ncfp)

 
I have a question and I figured you might have some advice on this - my new RE's office wants me to do the Clomid Challenge test just to have it on file in case insurance asks for it because of my age, though they admitted that it is not a prerequisite for an IUI cycle, which is my next step. So, knowing that taking Clomid back in Dec/Jan seriously messed up my body for 2 months and shot my fsh way up, I'm thinking I don't want to take it.
I'm currently on a break from ttc while I recover from uterine surgery to remove a rather large septum - so DH & I will be sitting out this coming cycle as well. So taking the clomid wouldn't even potentially help with ttc because we are specifically not supposed to try this cycle anyway.
Any advice? Anyone been in a similar situation? Thanks.

 
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AuthorReply
Alex
(Login bogart99)

emphatically NOT

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May 13 2010, 10:14 AM 

ncfp,

No way would I take it. Among other things, though I realized this late to the game, repeat use of Clomid (6+ cycles) is documented to increase the risk of various sorts of cancer (uterine, ovarian), and I can't imagine it's just cycle 6 that has that effect. Full disclosure: I did something similar to what you're doing (CCCT just to appease my RE) but with hindsight -- forget it; knowing what I do now, I should have told him to go jump.

FWIW.

GL to you and I'm sorry you're dealing with all this!

Best wishes,
Alex

 
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Anonymous
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If you need to take it there are ways around it

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May 13 2010, 11:52 AM 



I agree with the previous poster that do not take the CCCT test unless you ABSOLUTELY need to do it for insurance purposes. Then at that time if insurance does require it just don't take the Clomid pills and pretend you did. It does not show up in your bloodwork so no one will ever know. Many of us also take estinyl (also does not show up in your blood) to lower your FSH so your numbers look good for the CCCT test. We know it is deceitful but we deserve our insurance coverage to build our families.

 
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Anonymous
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I agree....FAKE it..... don't TAKE it!! nt

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May 13 2010, 11:53 AM 

nt

 
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Anonymous
(Login ncfp)

re: Fake it don't take it

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May 13 2010, 7:39 PM 

Love the tag line!! I'm just not good at faking anything, so this might be a different type of challenge for me!
Thanks.

 
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Hope Wings
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What dosage and what days of cycle did you take estinyl?

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May 14 2010, 5:06 PM 

n/t

 
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old Friend
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Agree

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May 13 2010, 1:22 PM 

It won't help, and may hurt you!


 
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Anonymous
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I agree with other posters

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May 13 2010, 4:01 PM 

Dirty little game with insurance. CCCT basically allows the insurance companies to disallow coverage. Fill the prescription and don't take it. They don't test for it in your system.

When your levels look good and your RE says "wow", you just say "wow" along with him/her. Huh, how did that happen?

 
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Chapter2
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Bad Experience

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May 13 2010, 6:01 PM 

I also had problems after taking clomid. AF went awol for months. It is too risky to take if you are over 40 with high fsh. I couldn't even cycle or get AF for months unless I was given provera. I would rather a small chance each month instead of having 90+ day cycles and the chaos clomid caused. You really need to try every month and hope to get lucky. You can't do that if your body is in turmoil or at a stand still.

Good luck. FYI. If you are in MA I may know of some ways to get some things covered depending upon what has been reported on you and where you go.

 
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Anonymous
(Login ncfp)

yes, I'm in MA

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May 13 2010, 7:36 PM 

sorry to hear that Clomid messed you up too. I agree that we don't have time to waste with weird long cycles. I'm curious what advice you might have for those who live in MA. I did read through my insurance coverage section and they say that if you have a documented case of POF w/high fsh prior to age 40 then they don't require the CCCT (which I did). So I called back the RE office and spoke to the insurance person there and she agreed, but said the doc still wants me to take it. jeesh!

 
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Chapter2
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Info(child ment)

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May 13 2010, 8:52 PM 

I never had my failed ccct on file. That helped. I took the CCCT at 40 but never got to do ART because no Res in Boston would work on me. I think that helped because I was told once you are denied ART for whatever reason you will be scrutinized for everything going forward. For example, I could get monitoring but if I did meds or requested an IUI everything would be denied and then I wouldn't even get monitoring any more.

What Re are you with? I floundered at a bunch but found the insurance dept and Boston IVF was more aggressive in putting things through.

Also, what insurance do you have. I own my own company and searched high and low for a plan and found you are screwed in MA with our insurance plans with high fsh. I have read Harvard and BCBS "Clinical Criteria for ART" and they will make you take the CCCT once you hit 40 no matter what. Also, if you get pregnant and miscarry then you have to start over because you are considered fertile and you have to wait again to get ART for 6 months. As crazy as it seems you may want to keep it quiet if you get pregnant on your own in case it doesn't work out. Use an OB in the early weeks if they will see you. It stinks that your insurance company doesn't give you the whole deal. I asked for 3 months if I got my 6 ART cycles with Harvard Vanguard even though I flunked the CCCT and they said yes but REs office said that was wrong so they wouldn't work with me and didn't want me to be self pay because of my odds.


Some how in all of this insurance/high fsh/bad reaction to Clomid/Boston REs not wanting to help I got lucky with a RE at Boston IVF who agreed to monitor me(covered by insurance) and give me a trigger shot at O and it worked....


Chapter2
19fsh
.11 AMH(Yikes)
DD born 7-20-09 at 42.5YO


 
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ncfp
(Login ncfp)

re: info

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May 14 2010, 8:26 PM 

Thanks for the info. I go to Dr. Cardone at Cardone Reproductive in Stoneham - he came recommended by this board, and I do like him so far. I have BCBS, but the requirements on my coverage policy state that if you have a documented case of POF prior to age 40 then you don't need to do the CCCT, which I was 39 when I was diagnosed. I'm now 40. I admit I get confused by the whole insurance thing. Just keeping my fingers crossed that my RE's office knows what they are doing on how they report stuff to insurance. Congratulations - love to hear success stories!! Gives me hope in moving forward happy.gif

 
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Chapter2
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REs Insurance Dept-long

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May 14 2010, 10:11 PM 

The woman in the insurance dept at Dr. C's office was the worst. She will not look into things for you and just holds you back. For example, I had a bad reaction to clomid(vision problems) and read in HPHC clinical criteria I could take an alternate test in lieu of the CCCT and it would count to determine benefits. She wasn't familiar with it and never looked in to it. Dr. C said I should take it but the insurance lady wouldn't put through the meds or call HPHC to do it and just wasted my time. She kept telling me to ask the nurse my question and the nurse said these are insurance questions for the insurance dept and transfered me back to them while I was trying to ask questions for my current cycle I was supposed to be doing this test in. It went back and forth on the phone until I blew up. I was monitored there for 8 months and never even got to do a natural monitored cycle. They just kept asking me, "What did Dr. C say?" and then cancelled if fsh was too high. They wouldn't even ask him specific questions for me. The nurses have no authority to do anything and he is only one guy. They never even let me do a trigger shot for timed BD. They said it wasn't covered without the CCCT or because of my fsh level, but BIVF did put it through. That is the month I got pregnant. I really believe I needed the trigger to force ovulation. Maybe those long cycles would have resulted in a normal ovulation with a trigger.


However, I do love Dr. C. He is a great surgeon(did a hysteroscopy/lap) and a very nice man. It just seems like he likes younger(
Sorry so much info but be as upfront with the office staff as possible so you don't find yourself expecting to be treated and instead are just floundering for months.

Despite all of this, the MA ladies put through the ringer with the high fsh insurance game have a remarkable track record on this board. You just have to work every angle including appeals to use your insurance and stay at it every month.

 
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Medina
(Login Medina0314)

OMG! The dots just connected

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May 13 2010, 6:14 PM 

I am so glad I am reading this post and the responses. In September 2009, before any chemical aide, my FSH and LH levels were really good....fantastic, even. My FSH was 7.8 and my LH was 6.4, my Estradial (is that the same as E2?) was 37.7.

My OB gave me provera to bring on my cycle and AF came about 12 days later - regular flow, maybe a little less than normal.

Then in October '09, I did a provera/clomid cycle at 50mg. Felt ovulation, but very minor staining on CD1 then nothing thereafter.

Then, in late Feb '10, I did another one provera/clomid cycle, this time w/ clomid at 100mg. Felt heavy ovulation, but again, no period and even less staining than the first cycle.

My April 7, 2010 b/w with my RE came back with my FSH at 30.2 and my LH at 22.5...what a jump!! That's when I got my DE/Adoption speech. My estrogen (same as E2?) was down to 18.6.

I asked my OB and the RE if the drugs could have affected the outcome and both said that enough time had passed for it to show up like that. Also, my ovaries were normal in the Oct09 sono and measured pretty small in the Apr10 sono. I am now wondering if the super ovulation depleted my Follies, thereby making my ovaries smaller and throwing my hormones totally out of whack!

I went to my new RE on May 10 and he ordered a battery of blood tests. I told him, yes, I'm trying to TTC but I also want to know that there is nothing wrong with me, etc. Wanted to make sure that DR's were not missing a diagnosis. He was very open, very helpful (I found him on a list of High-FSH-Friendly REs), wanted to approach me as a whole person first rather than a pair of insufficient ovaries. He didn't try to speed diagnose me.

Anyway, I will keep this thread posted on what my subsequent B/W shows. I'm due for another draw on next Monday, May 17. But I may be living proof that clomid can throw off virtually perfect numbers. We'll see what my subsequent b/w shows.

 
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Anonymous
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it's possible I guess, but FSH does jump around naturally too

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May 13 2010, 6:52 PM 

My first FSH day 3 reading was 25, a few months later it was 9.5, later it was 12... you get the idea. I didn't make any changes. E2 always below 50/ above 25. Some months FSH is just lower than others (never took clomid or the CCCT, I refused it!).

Unfortunately on my cycles with lower FSH the result from stimming were not very good. Drs like to say your highest # is the indicator, and that was unfortunately true for me.

 
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ncfp
(Login ncfp)

Thanks for all your insight!

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May 13 2010, 7:48 PM 

I think you ladies all pretty much confirmed what I was thinking and feeling. Insurance isn't asking for it, so why do I want to provide them with info to use against me?? I checked my policy and then called my RE back and he still wants me to take it. I figure I'll go for the Day 3 bloodwork and see what the results are - if they come back high anyway, maybe the RE will just drop the request and I won't have to fake it. There is no way I want to take it though after my reaction to 50mg before and this would be twice that dose - crazy. Great to know that Clomid doesn't show up in your bloodwork so no way to check.
So sorry to hear some of the stories of reactions some of you have had.
Thanks for confirming my suspicions!

 
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Anonymous
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Mass Girl here too (child ment)

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May 13 2010, 8:02 PM 

Honestly, I would take the CCCT and not the clomid and let your RE be pleased with the results.

What I've read over the years on these boards is that the test indicates whether your body will react positively to injectible meds. I am no expert but I think they will find that the CCCT test is hogwash. I simply think that science is so new in this area - that the iceberg has been barely scratched.

So, why even go there. I'd take the test and not the clomid and just move forward. If you take on your RE over this it may upset the balance of your patient/doctor relationship. He/she clearly thinks it's important and will have issues with you questioning it. Especially with input from "amateurs'. But we live this every day. And a lot of us have successes. And I also agree that FSH levels fluctuate as one of the other wise women posted. Why get yourself in an uncomfortable situation all around. My FSH has fluctuated wildly from a high over 15 to a low of 5. And we went onto have a healthy child - at age 41. (via IVF)

If you don't like your RE there are some great suggestions on the highinfo site.

Good luck!

 
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ncfp
(Login ncfp)

liking my RE so far

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May 13 2010, 8:14 PM 

I agree that I don't want to trip up my doc/patient relationship with my RE (he is my 2nd RE, the first one wouldn't work with me unless I did DE) - I like him and he actually came highly recommended by this site. Interesting point about him wanting to see how i react to the Clomid for the stims..this thought did cross my mind too, but I've heard that your body reacts differently to Clomid than most stims - true? And like you said FSH levels can indeed fluctuate from one cycle to the next - my highest was 52 (cycle after my round of Clomid) and 2 months later it was way down to 7.8 and it's been several numbers in between since this whole high fsh roller coaster started for me last year.


    
This message has been edited by ncfp on May 13, 2010 8:21 PM


 
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Alex
(Login bogart99)

2 more things

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May 14 2010, 12:31 AM 

ncfp,

Two things -- 1, I don't think it's that Clomid doesn't "show up" in b/w, it's just that they don't check for it. I guess they just assume everyone will take it, but of course those of us who understand how it affects us and expect a high response have an incentive not to.

2, yes, Clomid and stims are different. Honestly if you have a high FSH reading you're already expected to be a poor responder, any treatment cycle should be planned accordingly, and having the result from the CCCT doesn't really add much (that's not just my opinion, there are a bunch of published studies that find the same thing -- go to PubMed and search on (e.g.) "poor responder" and "CCCT" or "CCCT" and "diminished ovarian reserve" and you'll pull them up.

So, again, you know where I stand on this ...

Best wishes,
Alex

 
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Medina
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Over 40? Clomid not recommended

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May 14 2010, 11:55 AM 

I have also read somewhere that clomid is not recommended for use in women over 40, that it doesn't work and may actually thin the uterus lining making it difficult for the embryo to implant should a successful fertilization occur.

What is CCCP?

 
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