TNF ALPHA

17 Replies
samy - November 1

hi everybody...u all know my story abt two recurrent premature deliveries in 1 and half yr around 6th mnth in which i lost my twin boys nd second time daughter......now my doctor is checking me for all aspects ...to rule out the reason for these preterm deliveries. all the test for blood clotting disorder and karotyping came out to be normal...though my ob said no other test is left after this...but the genetics and immunology doc she referred me to for karortyping said to get another test done called TNF ALPHA......which has now come out to be +ve...though my own OB is not satisfied with the report...since at first the genetics and immunology doc said it is normal and later she said it was by mistake she wrote 58.4 instead of 584.4.....now i m, confused and my OB also says she thinks my test should have been normal. now genetic doc says at certain point of time mother's bodies develop anti bodies and those become so active that they destroy the preganncy...sending into preterm . the treatment for the same is that they will take blood of husband and separate leukocytes from it and insert into my body thru skin...it is an expensive ,painful and tedious treatment...had anyone heard abt such and wat do u guys think...wat should i do? my ob says this treatment is not reqd.....she will put me on herapin and certain other medicines and injections which will make my immune system strong and will help in sustaining next pregnancy.......plz share ur views, experiences and knowledge........WAITING!

 

stefkay - November 2

samy, this sounds very much like some things I am going through. My dr. is a specialist in recurrent miscarriage and explained some of this to me. He didnt mention the Alpha test (although I've read about it) but we discussed Natural Killer cells. This treatment you are talking about is IVIG and it is VERY experimental and there are no reports or studies that show it actually works. There are also no standard guidelines for the treatment process (how much, when, etc.) It is very expensive and involved (going to hosptial for treatments that are like chemotherapy treatments). If this is the case you don't really want to up your immune system, as that is what is working over time to attack the baby. I wish I knew more about it now, but next time I talk to my doctor and if we get to that point of the testing again I'll let you know what he says. You may want to check out the Alan Beer's Center for Reproductive Immunology and Genetics (repro-med.net)...but, most OB's don't have the knowledge or experience to deal with these sorts of things so I'd talk to the Immunologist about this more and maybe get referred to a dr. that is willing to help you if the immunology doc can't take you on as a full time patient. Good luck to you! Oh, another thing, I'm surprised that they think this is the problem when you are having second trimester losses, because from what I understand this usually happens early on in the first trimester (that is when I usually lose mine), so it may not be the issue, but again, I have no idea...

 

samy - November 2

hi stefkay u r rite...wat all i know abt it says in this anti bodies r developed and they behave like natural killer cell which kills the fetus and it is mostly happens in first trimester but can also be possible in 2nd trimester though the percentage is less......and acc. to my info its the white blood cells which become more active and termed as natural killer cells. also if it happens in one pregnancy the antibodies will be more stronger and in quant_ty also more in comparison to first ...hence more active for killing the fetus and so is the reason for recurrent miscarriages and at certain point they become so active that it gets impossible to carry...this actually increase with every next miscarriage......so correct it as early as possible.... ...but in my case my gynaec says she will give me certain medicines regarding immune that will help me...now i m planning to consult another gyanec for her advice...be in touch...do let me know wat ur doc....thanks for replying. yeah it is a tedious and experimental and expensive also...needs to be started at least 3-4 mnths prior to conception. tell me how amny losses u had earlier? i belive u r carrying at present?

 

stefkay - November 2

Hi samy! Please do keep me posted on what your gynae says! I don't find many women with this issue on this forum for sure. Yes, normally with this you will start miscarrying earlier and earlier ad the cells fight off harder each time. I have had 6 losses and the last ones were very early (before 5 weeks). Right now I am pregnant agian with high hcg so far but a second draw on monday will show if it is going up. I started having a bit of spotting yesterday before I saw the specialist so I'm not tooo optimistic, but will hope for the best. What did your doctor tell you she would put you on for immune system? I was told we may have to try a steroid or something like that, but my dr. is very wary of the IVIG therapy right now.

 

samy - November 7

hi stef, consulted an ob who is a specialist in recurrent miscarriages and abortions....she has put me on clomid this cycle coz i think of my pcos. will monitor me regularly for few days...asked me to get few tests to check tuberculosis in uterus...also IL-4 which is also similar to tnf-alpha which will reflect my state of antibodies....she also doubts that i might need a hysteryscopy if everything is otherwise normal.....so will get the tests done once i m thru with my af's and will c_m to know abt 20 days later ...will visit my doc again on 15th of this mnth...so will let u know wat she says...in the meanwhile keep me updated. anyways hows is everything at ur side? wat ur doc says...wat abt spotting ...i hope everything is fine!

 

stefkay - November 7

Hi samy! Thank so much for the update :) I will keep you posted as well. Things are ok here but a bit scary. Still having light spotting here and there but my beta hcg numbers are really good (954 at 16dpo and then 6,728 4 days later which was this past Monday). I am just going to leave it at that until I have my first u/s next Wednesday (in 1 week). I pray everything looks ok but we'll know a bit more then. I'm just releived the numbers went up for now. You know I almost forgot that my dr. explained to me that progesterone is a natural immunosuppressant and in many ways helps keep those nk cells, antibodies, whatever (I can't remember exactly how he said it) under control somewhat and basically helps to suppress the immune system. I was looking through all the stuff I have here over the past year of research and basically found that there are TONS of things to test for, of course, but basically there is a very short list of things used to treat all of the problems. If I can remember correctly they are 1) baby aspirin, folic and B vits 2) heparin 3) progesterone 4) steroids 5) antibiotics (if an infection is the problem, but this hasn't been shown to be significant in studies) and then possibly IVIG and not many places do this treatment. It is kind of rea__suring in a way that there isn't a huge list of treatments that you have to work through to hopefully find something that works, lol! Good luck to you and I'll watch for your posts!

 

samy - November 10

thanks for ur concern and advice! good luck to u . i m sure ur first ultrasound will be fine. enjoy this period ...its one of the best time in womens life. take good care of urself...surely keep u update.

 

samy - November 30

hi ...hope stef u r doing wondrful....well i went to a specialist in recurrent as i have i told u ...but there is sumthing on my mind thats troubling me...i have been told by two other doc that had my tnf alpha Been so high i would have aborted in first trimester...so waiting for the cross check report..but this specialist wants to do a doppler and hysteroscopy on me....doppler is fine but hysteroscopy ...m confused.....she says there r chance that i might have a septum in uterus...even though my HSG is normal...my gynac who did my case last time said it is not possible......but specialist says they will take a part of endometrium and test it y u r not able to carry full term ...but my gynaec is not in favour. and m confused wat to do.....lit treatment is painful and expensive if the antibodies r not there...lets c wat the cross check report says. but hysteroscopy is making confuse....do i really need it? SUGGESTIONS R WELCOME....tell me abt u stef...wat ur doc is saying ...how is everything at ur side.....?

 

stefkay - November 30

Hi samy! Sorry, your post kind of confused me...so you've been to 2 doctors who said your tnf alpha was high and that that was the problem, but you just went to a specialist in recurrent loss who says you may have a uterine septum and wants to look inside the uterus? That sounds reasonable...that is what my specialist wanted to do with me too, but I got pregnant before he could do it. What is funny is that in ALL the testing I ever had, I NEVER had anyone just look at the structure of my uterus. I'm still worried about it because we didn't get to look yet, but I can't do anything now about it anyways. Why does the specialist want to take a sample of the endometrium? I didn't understand that. Also what is "lit treatment" and who is suggesting you do it? I would probably go with whatever the specialist in loss says over your regular OB. I've found that regular OBs don't know squat about miscarriages really. At least recurrent miscarriages I mean. As for me, I'm doing well so far and I'm praying every day it stays that way. I've had 2 good ultrasounds so far. The first measured 2 days further than I thought I was and showed the baby to be 6w3d with a heartrate of 120 and then the second measured one day ahead and showed baby to be 8w3d with a heartrate of 175! I sooooo hope it keeps up. I'm starting to think that if I had an issue with NK (natural killer) cells, then the baby would not have even made it this far. I have no clue what my problem has been, but I am starting to think it may have been a combination of things. Maybe the progesterone is helping? I'm also doing Lovenox shots (blood thinner) but I didn't start those until almost 8 weeks and it is merely a precaution as the specialist doesn't really think I NEED them. The only other thing he suggested is putting me on a steroid to suppress immune function if he ever suspects I have something attacking the baby (nk cells, etc.) but for now he won't do that because it is risky and the baby is doing fine. If I miscarry this one, I'm sure he will look further into those possibilities. So, basically I haven't been able to find out any more about what happened in the past because I am pregnant now. If this one goes to term and all is well, the specialist said he is still going to look inside my uterus after the baby is born. He said that women with uterine septums can have a healthy pregnancy once in a while and then miscarry other times because sometimes the baby will implant in a good part of the uterus and other times it will try to implant on the septum, which will cause it to miscarry. Your losses were in the 2nd tri though I thought and that wouldn't make sense for a septum? Not sure though, that could be possible though....

 

samy - December 1

hi stef...good to hear abt u ......just relax....m sure everything will go right this time for u....i will pray for the same......now i will tell u in detail my story....i have actually consulted 5 docs..........3 dealing in recurrent and 1 regular ob and 1 high risk ob(my gynaec actually in the second trimester.)...... now i got my tnf alpha checked again ...it is normal...the lab person said that...but still needs to be confirmed frm the doc...... today i went to a new doc who's specialist in recurrent...she says ...in my case tnf alpha doesnt seems to be a possibility...had it been i would not have carried so far.........secondly i delivered both the times around similar gestation period.....19 weeks with twins and 24 with single fetus....so she says this is more a case of incompetent cervix as she can see........4 docs said no to hysterscopy as my hsg is normal.....so "no septum"...but that specialist to whom i went at first wants to do my hystro...but 4 docs denied it.....this second specialist to whom i showed today said that wat my actual gynac has suggested the course of action for me in next pregnancy is absolutely right....cerclage being the most imp.......with be bed rest and progesterones, heparin, immunoglobin, asa...and few more medicines....ya i also got the Doppler done today a swell as per my first specialist ...she wanted to check the vascular blood flow to the uterus ...which is also perfect....................so i m think not go to the first specialist after Monday...as m not really satisfied with her course of action...wen 4 docs say one thing and she is on the opp sid........lets c ....my pcod condition is also better ....i m think over it now and will decide which doc to follow....i feel i should follow my gynaec...though the second specialist is awesome but she extremely far away from my home...in case of emergency it will become really difficult to approach so lets c....doc have give me a green signal for BD....now its time to decide....take care..stay in touch !

 

stefkay - December 1

Hi samy! Wow, sounds like you have gotten some GREAT info! That was much less confusing. Ok, after reading all of that what I feel in my gut is that I agree that it is not the tnf alpha...I felt that in the beginning because those losses tend to be early and get earlier with each miscarriage until you don't even get pregnant anymore. As for the hysteroscopy--if you had a clear and good HSG (i didn't know you had one of those) then you are most likely fine in there too! I always thought it was IC incompetent cervix, for the most part due to the time frame, etc. You just need someone who will do the cerclage early and watch you CLOSELY. Some doctors just are overloaded and don't spend any time with high risk patients. That's why I love the dr. I'm seeing. He is 3 hours away so I can't run there if I need to really fast, but he sees me every 2 weeks and said I can call anytime about ANYTHING! very rea__suring. The rest of the treatment sounds good. Are they doing the heparin just as a precaution or do you have a clotting disorder too? I am on lovenox which is safer than heparin, so I'd ask about doing that instead if you can. My dr. preferred it to heparin by far. AND you only have to do the shot once a day because it is longer lasting. Heparin, you must do 2 times a day. Do you know what the other medicines are you'll be taking? Is the immunoglobin the same as IVIG? Did all of your doctors suggest you do the immunoglobin or just one? I'm very interested in that as none of mine have ever suggested it. Thanks for sharing your experience with me. It has helped a lot! I wish you the best and know you will carry a baby to term soon! I promise you :) I've read so many books and stories of women who it seemed had given up hope and they all ended up having a baby!

 

samy - December 2

hi stef......yeah....even i m now sure this is IC. 3 docs suggested heparin only for precaution (wen they were not sure abt my tnf alpha) but now the second report has come lets c wat they say...but i think just to be on safer side they may put me on heparin. and m not sure abt IVIG ...will check that out frm my doc....and let u know...wat exactly is IVIG? 3 docs have suggested me immunoglobin, there course of action is same.......that i have told u ....and my hsg is sound and clear....which says ...there cannot be septum.... my 4th doc also i think will say the same as she also suggested i need more of hormones...there is a injection named "SUSTAIN" which helps to carry the pregnancy.......with the cerclage in my case. this first specialist that i m seeing is good but m not satisfied......she is insisting on hysteroscopy which i dnt think is required......will go to her tomorrow and let u know the latest then...c ya...take care...thanks for ur wishes.

 

stefkay - December 2

Sounds like a plan...I'm not sure how to explain IVIG...I think Dr. Beer's website explains it the best I've found. I just was asking you if it was the same as immunoglobin...I didn't know exactly what that was (I've heard of it, but that is it)....so I wondered if they were the same thing? I'd definitely do the shots and hormones. I've never heard of "SUSTAIN" though? I know that if you have a cerclage you should look into some shots that I read another girl with IC will be doing--I think they are called P17 or something like that? Her screen name is Shopping for Two and she posts on the First Trimester forum. You may want to post to her because I think she will be having a cerclage soon and I know she said she is having some other shots. Good good luck to you!!!

 

samy - December 3

hi ...i went to this first specialist today...she is insisting in hysteroscopy and also wants to take a part of the endometrium and test it to find out the reason....but 3 docs said it is not required...so i m dropping it a sof now...will soon go to my first gynaec and start the other treatment that i have told u...and yeah shopping for two is a good frnd of mine...i will talk to her surely...she is also sumwhere around 9 weeks...she also had a similar case like mine ...i just wish good luck for her and u as well.....take care!

 

stefkay - December 3

Thank you samy! Keep updating me and you are in my prayers...I so hope that you have MUCH success soon!!!! You've been through a lot and I think you are on the right path to having the baby you've dreamed of :)

 

ShoppingForTwo - December 3

Geez Samy you have been through A LOT since I've last read this thread!! I have been sooo busy and sooo tired lately, I did email you though. IVIG? Is that what your doc is thinking of doing? I will check out that website so I can understand what it is, k. When's your next appointment?

 

samy - December 6

i went to my doc who has put me on basic medicines like folic for 6 weeks and said then i can start trying again...the rest treatment they will do wen i will conceive...of course cerclage will be surely there and immunogloblin injections wat they r planning to give with low dose of heparin just for precautions.....catch u later but tell me augustine and stef wat is ur doc doing this time?

 

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