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Update on my test results from miscarriages--need advice

January 8 2011 at 11:45 AM
Jennifer  (no login)

 
Hi ladies,
Not sure if any of you remember me, I had two miscarriages with donor egg (got pregnant both times, miscarried both time). I am hoping for any insight you guys might have!

The D&C came back normal chromosomally (female though, so could be erroneous).
All my immune and clotting tests came back NORMAL, except MTHFR BUT i do not have elevated homocysteine levels so Dr said it was not relevant (apparently almost 1/2 the population has a mutation here, only a certain one causes problems).

My RE wants to go ahead with the last embryos we have, using low dose aspirin (we used this before, he uses it on all his patients) and Lovenox as a protective measure. My Gyno wants to me to go see a reproductive immunologist, who can rule out anything else before we cycle with our last embryos (why do the stakes have to be so high?). I have scheduled this appointment but am freaking out as we are now self pay and I know the reproductive immune stuff can be waaaaaay pricey.

Anyway, I am wanting to know what you guys think: 2 miscarriages (one after heartbeat!) and no apparent problems?? Any thoughts?

Thanks!

jennifer

 
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(Login Blessed_Thistle)

Can you see a hematologist for the testing instead? (children ment)

January 8 2011, 11:58 AM 

Shouldn't your insurance cover repeat miscarriage diagnostics?

Also, did you see the below thread? I don't think I was the only one who finally found success after adding lovenox (and in my case, also high EPA fish oil and I corrected a vitamin D deficiency prior).

May this next one be your golden ticket.


 
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(Login Kacee56)

You might test for Natural Killer Cells. This has to be done at specialty lab.

January 8 2011, 1:03 PM 

I believe there only three in the US, maybe more, now. I used Millenova and has everything shipped to Chicago. It has since changed names. I did all of the test and they all came back normal. However, I kept M/Cing. We decided to treat me as though I had immune issues. I did Lovenox, Folgard 2.2 and low term Prednisone.

You might also want to get Dh checked for Sperm DNA Integrity Test. If he has this issue, it will not prevent your from getting PG, but can cause M/C. My Dh did have this issue and we were able to turn it around with an antioxidant protocol. We did this test before we ever cycled, so it was not a factor in my M/C's.

I am sorry you are going through this. I completely understand the financial impact. We were completely self-pay and spent more than $160,000. We now have three children.

 
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Renata
(Login doglvr)

Re: NK cells (genetic DD and DE kids ment)

January 8 2011, 1:31 PM 

On the flip side, I tested off the charts high for NK cells and told I'd never be able to conceive on my own, and with IVF would need IVIG before and during pregnancy. Also told I would need Lovenox for some blood clotting issue (but later a high risk OB said that test result was related to blood clotting in MY body, and would not cross the placenta, and he was right). Well, the month before my cycle I conceived naturally and the RE couldn't explain that one. He literally said, "You shouldn't have been able to conceive at all". Well, that conception is now 4 years old. With my DE pregnancy I needed nothing at all. So what I was told were serious immune issues didn't even exist. I know that many women do have problems that need treatment, but I think it's not always clear.

 
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Orchid
(Login arive)

who told you that? Did you take anything?

January 9 2011, 1:10 AM 

I am curious because I found a number of things from medical journals saying there's not good evidence NK cells attack embryos or are the reason for miscarriages.

But then a few that says they are.

Did you take anything? Like prednisone?

As far as I can tell for immunity there is (1) steroids (2) Ivig (3) that lipid thing that costs less than ivig... (Other things for clotting.)

So if you take prednisone then maybe you do cover some bases...but I guess I don't know about NK cells.

One interesting thing is that many people have normal pregnancies and test positive for these things--very few of them are total death knell for fertility ....at least as far as I can tell. So it is weird they said you'd never be able to have a baby when that is true--it is definitely true for NK cells.


 
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Anonymous
(no login)

similar

January 9 2011, 2:48 PM 

tested slightly high for NK cells, but RE was adamant that there is no proof that high NKs have any relationship to miscarriage. I had treatment anyway (IVIg) without success. Dropped it for my successful cycle.

It's a crapshoot.

 
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Anonymous
(no login)

not sure it has to be done at a specialty lab...

January 8 2011, 4:07 PM 

I just had "Natural Killer Cell Surface Ag (antigen)" test run through LabCorp. No special lab needed. Just regular blood draw and results were back in 2 days.

 
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(no login)

Not sure if it is the same exact test. nt

January 8 2011, 5:54 PM 

nt

 
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Anonymous
(no login)

this is the test I had done at LabCorp

January 8 2011, 8:50 PM 


 
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zane
(Login sane10)

2 miscarriages here too w DE

January 8 2011, 4:17 PM 

very early though like 5 wks. Tested pos for one mutation of MTHFR, too. Was then put on Lovenox for a FET and transferred 3 embies, one finally took and now have a 3wk old boy. We did 5 DE transfers total and then success. We don't know if Lovenox helped but thats the cycle that worked. Could have just been bad embryos and really bad luck....
I would try Lovenox on your next cycle definitely, and best of luck. Our first donor did not work, 2nd donor only FET worked, so sometimes it takes more cycles for some of us. Persistence pays I've noticed!!!!

zane

 
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macphee
(no login)

i was in same boat (mc x 2)

January 8 2011, 5:32 PM 

I think the embryo quality wasn't good but RE's disagree. I went forward w/ two more transfers and got chemical and bfn. I did have a vascular consult recently who said it was my choice to try lovenox w/ a new donor cycle. HE said there are likely clotting disorders that haven't been discovered and Lovenox could help in that case.

If you think your embryos are good and donor has good history, I would do more testing. I wasted more months with 2 more FET transfers. MC's waste a tremendous amount of time as you wait for hcg to go down to 0 -- never mind the heartache.

It's possible insurance would cover testing. After my insurance co denied ART, I still went for consults and testing. They require preapproval for ivf, de and FET's but not other services.

IMO I think you should leave no stone unturned as long as finances permit.

 
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macphee
(no login)

i was in same boat (mc x 2)

January 8 2011, 5:32 PM 

I think the embryo quality wasn't good but RE's disagree. I went forward w/ two more transfers and got chemical and bfn. I did have a vascular consult recently who said it was my choice to try lovenox w/ a new donor cycle. HE said there are likely clotting disorders that haven't been discovered and Lovenox could help in that case.

If you think your embryos are good and donor has good history, I would do more testing. I wasted more months with 2 more FET transfers. MC's waste a tremendous amount of time as you wait for hcg to go down to 0 -- never mind the heartache.

It's possible insurance would cover testing. After my insurance co denied ART, I still went for consults and testing. They require preapproval for ivf, de and FET's but not other services.

IMO I think you should leave no stone unturned as long as finances permit.

 
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(no login)

Recurrent PG. loss panel

January 8 2011, 5:54 PM 


 
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(no login)

this takes you right to the site

January 8 2011, 5:56 PM 


 
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(Login arive)

I wish I knew the answer

January 8 2011, 6:34 PM 

I think there is so little understood.

But in this case, you have a good reason to see the repro immunologist. I have two without heartbeat but with my old eggs. So I don't think I have as much evidence. (I did get some tests.)

The thing is that my doctor said 2 was to be expected...My gyno said it wasn't even unusual to have 2, at any age. It is such a tough issue because miscarriages are very common, unexplained ones are common and it may almost be 'normal' as much as we hate to hear that.

But it might be worth some tests.

Another options Daisy gave me was to give me the list of tests and have my gyno do that. Then insurance may cover it if he does them.

I agree 100% with your sentiment!!! I feel exactly the way you do. Why do the sakes have to be so high???

It puts you in a terrible bind if you are struggling to pay for fertility in the 1st place.

I'm so very, very sorry for your loss.

 
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Daisy
(Login loochieuk)

Diagnosis of MTHFR is a red flag for miscarriage. I agree

January 9 2011, 12:48 PM 

that you should take Lovenox starting as soon as you start any BCPs and well before transfer. For MTHFR you also need extra folic acid and vitamin Bs. Either make up the following yourself from OTC vits. or ask doctor to prescribe something like Folgard 2.2 or Metanx. Basically you need 5mg folic acid, 50mg B6 and 1mg B12 daily starting at least 2 months before cycling.

It is a rather old fashioned and very conservative approach to only mediate on high homocysteine, so I think it is right that you are adding Lovenox and extra vits. You may well not need aspirin as well though and I would discuss the benefits of this and when to take it as it is a powerful medication.

Best of luck,
Daisy
xx

 
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Anonymous
(no login)

not all MTHFR is a red flag for miscarriage

January 9 2011, 12:57 PM 


 
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Anonymous
(no login)

Correct -

January 9 2011, 2:35 PM 

for a single mutation of MTHFR with normal homocysteine levels, even Beer Center would not give Lovenox. Something like half the population has some copy of MTHFR, by itself it is not a red flag for miscarriage.

They told me they look for 3 single mutations of possible clotting markers before giving Lovenox (or double mutations). I had the same MTHFR result as the original poster + one other single mutation of PAI-1 = they said no Lovenox, just baby aspirin, just not enough reason for a powerful drug.

I personally took Lovenox anyway as a personal decision at my own risk BUT I also don't think I really needed it. I would never advise someone to take Lovenox and baby aspirin at the same time, too much risk of bleeding.


 
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Daisy
(Login loochieuk)

Thank you anonymous. I didn't actually advise aspirin and Lovenox at the same time.

January 9 2011, 4:13 PM 

Agree that 2 copies of the C gene appears to be considered higher risk for m/c issues, but that using Lovenox after 2 miscarriages may be of benefit regardless.

Just to point out that in the case if APS for example, Lovenox AND aspirin would be a standard protocol as aspirin has a different but essential action on platelets that is particularly essential in the treatment of APS. So despite your worries about bleeding (which is NOT necessarily across the board with aspirin and lovenox by the way), this could be one exception don't you think??

Bah humbug!!

Daisy
x

 
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(Login Kacee56)

I actually took baby aspirin along with the Lovenox. nt

January 9 2011, 4:34 PM 

nt

 
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ruby46
(Login ruby46)

chiming in on MTHFR + Lovenox

January 10 2011, 3:15 PM 

I am homozygous, two copies of the dreaded C gene... never took Lovenox, only baby aspirin. Both RE (from THE top clinic in US) and OB said you don't need Lovenox (and in fact it would be dangerous to take it) as your homocysteine levels were never that high. And, I had a history of m/c prior to achieving success with DE.

It really irks me to see non-medical people here (and elsewhere) telling newcomers to get themselves on Lovenox. This is what a doctor -- and only a doctor -- should prescribe on a case by case basis.

I am living proof - and I know of quite a few other women with a similar story - the Lovenox is not necessary. It may work for some, but it is not a drug that should be taken lightly. It is not 'just' a blood thinner. Even on baby aspirin, I had very serious bleeding during my C-section. I probably would have gotten into some real trouble had I been on Lovenox. I know women who go on it in desperation (which I do understand), but they don't seem to realize that it can be very dangerous to take Lovenox. And the docs who prescribe it like candy ought to have their licenses taken away from them.

They simply have not done enough research/testing to really understand MTHFR's impact on conception/pregnancy. Newcomers, please do your research before you decide to take Lovenox.

 
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Anonymous
(no login)

LOVENOX is a serious drug

January 10 2011, 7:38 PM 

"LOVENOX® alters the bloods ability to clot. Excessive bleeding (hemorrhage), leading to death, has occurred with LOVENOX®. Bleeding can occur at any site with LOVENOX® use. *The use of aspirin and other NSAIDs may enhance the risk of excessive bleeding.* Be sure to tell all your doctors and dentist about all of the medications you are taking, including those you are taking without a prescription, such as aspirin or other NSAIDs. Also be sure to tell your doctor or dentist you are taking LOVENOX® before any surgery is scheduled and before any new drug is taken.

All patients should be carefully monitored by their doctor while taking LOVENOX®. Your doctor is likely to obtain blood tests that measure your blood count and check for signs of hidden bleeding while you are on LOVENOX®."

http://www.lovenox.com/consumer/default.aspx


 
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Jennifer
(no login)

You ladies are AMAZING....thank you....

January 11 2011, 12:15 AM 

I am continually astounded about the amount of info I gain from this group.
Thanks to everyone who responded...I am going to talk to my RE about the bleeding risks with Lovenox. I also want to ask him about Folgard, as that seems to be beneficial as well. I am also going to the Reproductive Immunologist (Dr Stephenson, in Chicago, supposedly world renowned) and see what she thinks is a good plan I assume she will test for those dreaded NK cells. I really hope to God I don't have a problem with those.

I will keep everyone posted. Additionally, I am gearing up to get another donor if this cycle fails. We will try one more time before moving to adoption. Although by that time we will probably be old and poor......truly not how I ever saw myself and my family. But I guess we can't control "the plan" can we? I will just do the best I can to make this work, exhausting all possibilities.

Thanks again ladies, it's been a long road for me and you have all been there each step of the way!

xoxo-
jennifer


 
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