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Discussion Starter · #1 ·
Hi ladies,

I would love some opinions from knowledgeable people. I am 38. I have just found myself - remarkably - naturally pregnant after 4 1/2 years of trying. I have had 2 prior pregnancies, with treatment, which both ended in miscarriage. The first was a Clomid pregnancy which was a chemical (lost at 5 weeks). The second was an IVF pregnancy from my only IVF cycle, and was a missed miscarriage at 8 weeks (had stopped growing around 7ish weeks). I had genetic testing done on the "products of conception" which came back inconclusive as it was a normal female karyotype but there was contamination from my own cells.

I have a couple of immune issues. I am at a conservative clinic. I had immune testing done at Millenova Lab in Chicago after the chemical pregnancy, against my clinic's advice, in case there was an immune problem that could be treated head on. The tests came back homozygous for MTHFR (A variant) and my killer cells are slightly raised. I haven't had the TNF/DQ alpha match tests but have had everything else, I think.

These are my NK results:-

CD3 (Pan T cell) - in range at 67.3 %
CD4 (T-helper) 57.2%
CD8 (T-cytotoxic/suppr) 15.2%
CD19 (B cells) in range at 10.5%
CD16+/CD56+ 16.1% on first test December 2009; 13.5% on repeat test February 2010
CD16-/CD56+ - in range at 4.7%

NKa/K562 Killing

T:E (1:50) - 10.1% (normal range less than 10%)

Suppression with IVIG and intralipids goes down to 5.2 - 6.2% killing.

I'm trying to establish whether the killer cells and/or the MTHFR need treatment. Current cinic thinks killer cell blood tests are bunkum. Refused to comment on uterine biopsy for killer cells. Referred to July 2010 paper from American College of Obstetrics and Gynae which says that MTHFR is a weak prognostic factor for miscarriage and should not even be tested, let alone treated. Dr advised that he could not in good conscience put me on injectible blood thinners as I might "have a car accident and bleed to death". Sigh.

After IVF miscarriage this summer, I sought second opinions from Sher Institute in New York and NYU (I live in the States but am English so prefer Fertility Friends to its American equivalents!). Both clinics agreed that I did not need any treatment for the MTHFR. NYU does not agree with killer cell theory. Sher, as you will all know, does, and said I would need intralipids starting before embryo transfer.

Roll on December - naturally pregnant, not on any drugs at all apart from progesterone pessaries, and freaking out about what to do. I e-mailled the Dr I saw at Sher NY, advising him of the situation - he reiterated that I did not need blood thinners, and that intralipids "would not be helpful at this stage". (I am 5 weeks 4 days - say gestational sac and yolk sac this morning).

Totally confused, I e-mailled Dr Sher directly on the SIRM message board, asking him if/how he would treat me. He responded intralipids immediately and every 4 weeks until 24 weeks, and Clexane.

I have an appointment at Sher New Jersey tomorrow morning to discuss implementing Dr Sher's recommendations - but just don't know what to do. I am honestly sick of feeling like the responsibility is on the patient to, in effect, solve their own case, and the fact that it seems that if you shop around long enough, you can find a Dr with every opinion in the range and then justify doing what feels right to you.....

I don't want to take unecessary drugs. I am afraid of being on blood thinners for almost a year. Conversely, I really want to hold onto this pregnancy and am conscious that, at my age, every pregnancy I have a chance at is precious and may be the last.

Can anyone weigh in on the NKa in particular? It is only 0.1% over the cut off! I asked Dr Sher about this and he replied that "anything over 10% is significant."

Is there anyone else out there who is homozygous for MTHFR and has had success after being treated with blood thinners, having previously miscarried? (I have the A variant, which I believe is less serious than the C variant).

My clinic attributes my previous losses to poor egg quality.

Sorry this turned out so long, but as you all know, these matters get complicated!

I also want to mention that the last time I was pregnant, I came out in an angry, itch rash/big patch of eczema on the front of my neck. I had this again this time, around the time of conception. In fact, this is how I realised I might be pregnant, as these are the only 2 times I've had this. Has anyone with immune issues had a similar reaction?

Thank you for any opinions or advice.

Angela

PS For those interested, the only things I changed prior to getting pregnant naturally were, I had a hysteroscopy the cycle prior to conceiving. Also, on the advice of Sher New York, I have been taking melatonin and inositol for egg quality - I had been on these supplements for about 3 months before conceiving.
 

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well... those NK tests seem to me to suggest your NKs are higher than normal at least some of the time... and the fact that your eczema flairs up in early pg suggests that you may have some sort of immune reaction to pregnancy (maybe DQa related?).  I don't know when those test results were from compared to when you have been pg.  Sometimes, if your NKs are volatile, they flare when you get pg, and then take a while to go back down.

I am pretty sure Beer centre and Dr G would definitely want to treat your MTHFR **** with clexane/lovenox/fragmin & 5mg folic acid.  It really is a very routine treatment that many of us have had successfully, and is routinely prescribed in pregnancy for women whose health is at risk e.g., due to obesity, diabetes, previous history of blood clots etc.  As to MTHFR being a 'weak prognostic factor for m/c' - the way I see it is that, even if on its own, it is a weak factor, most of us have multiple issues that add up together, with each one contributing to reduce the chance of getting/staying pg - so, to me, treating everything you can makes perfect sense because what we are aiming to do is to chip away at anything that reduces our personal odds of having a baby.

Personally, I think if I was in your shoes I would think about increasing the number of pessaries you are taking - or at least discuss it.  progesterone has an anti-inflammatory effect which helps to calm the immunes - and ladies with auto-immune issues may have more CD19+5+ B cell activity which can be anti-progesterone.  I think I probably would want a shot of intralipids now, just in case.  Its an extremely row risk product and isn't that expensive compared to other treatments.  I probably would also want 40mg daily clexane or equivalent, and 5mg folic acid.  Whether its worth taking dexamethasone or prednisolone now, I'm not sure - but Dr S normally gives dex with intralipids and clex - and stops steroids at about 10-12 weeks, although he seems to think it helps more with implantation rather than keeping a lid on NKs after implantation but other docs disagree.    If the next scan looks good, I'd want to continue with extra progesterone, monthly intralipids and 40mg clexane until 12 weeks and then think again, and decide whether to continue intralipids and clex until at least 22 weeks. 

It is very hard to decide when you get many opinions from different docs - have a look in my faq under F - where I talk about this.  The only other thing I can suggest is trying to imagine how you would feel at in 15 weeks-ish time if you had these extra meds and your pg was going well but you had no idea if you'd gone through all that expense etc unnecessarily vs if  you decided to go without these meds and the pg hadn't gone well, but you had no idea whether they would have made any difference.    The problem is that if the pg goes well with the meds you will never know if the meds made a difference and if you take the meds but the pg doesn't go well, you couldn't be sure that there wasn't an immune problem that had already caused a problem before you started the meds.

I hope this helps, but as you already know, there is no easy answer to your dilemma.

good luck with whatever you decide to do.

A x

 

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Discussion Starter · #3 ·
Thank you Agate - I was hoping you would reply :)

I went to Sher NJ this morning (prior to reading your reply). The Dr prescribed me intralipids and I had my first dose this afternoon. I just have to cross my fingers that it isn't too late..... I am having another dose in 2 weeks to, in effect, double up since I am late in getting started. Then, if the pregnancy is continuing, it will be once every 4 weeks until 24 weeks. They also drew blood from me and my husband today to have the DQ alpha match test. The Dr seemed to think that if there is no DQ alpha match, just today's dose and the next dose might be enough - if DQ alpha is positive, we will carry on until 24 weeks.

I wrestled with the injectible blood thinner question and figured I would be open either way to what the Dr said. So far, my own clinic (3 Drs), Sher NY and NYU all said don't do it (indeed would not prescribe it); Dr Sher on his message board said do it; Sher NJ today said don't..... So on a majority vote basis, I am just doing baby aspirin. Fingers crossed......... I find it slightly puzzling that all the Sher drs do not sing from the same hymn sheet, but they have told me that they don't always agree with each other!

I agree with your thought process. If this pregnancy fails and I end up doing another cycle of treatment, I will surely insist on adding blood thinners into the mix.....so why not do them now? I could frankly have been persuaded either way, but yet again the Dr I saw today appeared to be talking alot of sense so I followed his (and the majority of other) recommendations. Hope I have made the right decision.

I have been on 5mg folic acid daily since about March.

The new concern of the day (isn't there always one?!) is that yesterday, I went in for my first ultrasound at 5w 4d and everything was measuring on course. They took my hcg and progesterone - hcg at 8100 and more than doubling (which is more reassuring than the last pregnancy when it didn't rise properly from the start). However progesterone had dropped from 25 last week to 17. I was worried about the drop; my clinic says they are not worried as anything over 15 is what they consider a decent number, that the blood levels fluctuate, and that I am on pessaries which do not show up readily in the bloodstream. Still not that reassured. The Sher Dr I saw today prescribed me Prometrium pills 3 x day in addition to the pessary that I am to take at night. So now I am mixing drugs from 2 clinics.......my current clinic would disown me if I confessed to seeing a Immunologist!

Any opinions on the progesterone situation? Sick with anxiety.....not helping that I do not feel pregnant at all. Having said that, felt really sick with both my miscarried pregnancies, so perhaps not feeling sick is a good sign......

Angela
 

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angela:  it sounds like the progesterone situation is probably ok - my take on it is - if in doubt, take extra prog - which is what you are doing. 

hope you have an easy pg!

A x
 

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Angela - firstly congratulations on your pg and hoping that you have an easy and happy nine months. I am glad that you got everything sorted with your consultant yesterday and hope you are now feeling more ^reiki^ .

Currently I am clutching at everything and anything that I believe may give me that longed for pg whilst inbetween treatment. I was interested to read the two supplements that you were taking in particular the melatonin. Was this prescribed to you because looking on wikipedia it states under fertility some resources warn women trying to conceive not to take a melatonin supplement.[67] One study reported that three mg of melatonin taken in the evening raised prolactin levels in six out of seven women.[68] Melatonin also lowers FSH levels. It is believed that these hormonal changes could in some women impair fertility There is also a large section under Immune System when reading about melatonin on wikipedia which from my understanding would have an advserse effect.

Interesting and confusing ^idiot^ .

Best of luck

h2h xx
 

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Discussion Starter · #6 ·
Sigh. To be honest I've got enough to worry about at the moment without something else... It wasn't "prescribed" to me because it's an over-the-counter item. It was, however, recommended to me by the Medical Director of the Sher Institute in NY - that's why I took it. I am not normally the type to take something or have a procedure without fully researching it, but I trusted the guy (and indeed if I need to cycle in future it will be with him) so I took his recommendation. He said that there are recent studies about both melatonin and inositol being good for egg quality. During my ivf cycle over the summer, I was told that my egg quality was poor. I'm 38. That's why he made the recommendation. His advice was that the recent studies were encouraging, that the supplements may not help me, but that they would not harm me. Inositol is apparently a naturally occurring sugar that has been found to be lacking in the eggs of women with poor egg quality. I just figured that it was worth a shot - certainly I am far less concerned about the effects of these supplements on my health than I am about possible long-term effects of the high dose ivf drugs I have taken. I am fairly conservative about what I take (hence not doing ivf sooner, and struggling with whether to take extra drugs such as blood thinners and intralipids). I am an ex medical negligence lawyer and this has made me very wiling to question almost everything recommended to me by the medical profession. My husband takes melatonin when he flies to Asia on business. I was just happier to take it than I was other things - for example, Chinese herbs have been prescribed to me by my acupuncturist but are still sitting on top of my fridge untouched as I just don't feel comfortable taking them! I guess everyone just has to make their own decision - and I know it gets hard.

In terms of impairing fertility, all I can say is that I got pregnant naturally for the first time since taking it.. In the longer term, I don't know. I took it for almost 3 months, and stopped when I found out I was pregnant. Was it the melatonin/inositol that did the trick? Who knows.....my money would be on the hysteroscopy that I had done the month prior to conceiving, but I will never know.

You could try searching for the recent studies if you want to know more. Alternatively, have you looked at the SIRM message board? You can post questions directly to Drs held in pretty high regard, and they are amazingly responsive. You could ask Dr Tortoriello (the Dr I saw in NY) directly about your concerns and ask him to refer you to the studies.

I can see you've been through a lot too. Best of luck to you xx

 
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