Fertility Friends Support Forum banner
1 - 20 of 20 Posts

·
Registered
Joined
·
2,654 Posts
Discussion Starter · #1 ·
Hello there  :)

Me again.  You might be able to tell that I am on a bit of a mission  ;D

We have done quite a few cycles... 5 Fresh IVF Cycles (1 being a srrogacy cycle) and 1 FET (so 6 in total)... but through all of this I have never been advised to have the AMH test done.  I think I mentioned it to my clinic and they at the time told me that this is not necessary since I am producing plenty of eggs (I have PCOS and my egg numbers have varied from 17 to 26)...  I had always had a good low FSH and other levels have always been fine... (apart from those damn immunes)

Now, what I thought was that the AMH test tells you your ovarian reserve - so in other words, tells you how many eggs you have left in your ovaries.

But what else does it tell you?  Does it give an indication of the QUALITY of your eggs??? 

Also does anyone know of another test called Inhibin B?  Any info on this would be also greatly appreciated...

tweets xx

 

·
Registered
Joined
·
959 Posts
hi tweetie

i know what its like when you are on a mission...
AMH does give you an indicaton of the reserve of your eggs. It doesnt tell you the quality. After 6 cycles i would hae thought taht would have been a good indicator. As you say you produce lots of eggs so i dont really see the need for the test - in my opinion. Its going to tell you what you already know...that you have alot of eggs

sorry i dont know about the other test..
 

·
Premium Member
Joined
·
15,864 Posts
I THINK inhibin b is only used in combination with amh and fsh as a sort of time to menopause prediction test.  I don't THINK amh or inhibin b will tell you any more info than a recent ivf response would?
 

·
Registered
Joined
·
73 Posts
Hi tweetie,

I am in a similar situation to you. I have had six IVF cycles (fresh). I did get pregnant three times, one chemcial preg and two miscarriages at seven weeks.

I have been diagnosed with immune issues too, high CD56 and also high TNF alpha. I have taken Humira but it didnt reduce the levels levels levels so I feel like I wasted money on that for no benefit.

I have questioned my egg quality throughout this process and like you I am on a mission to try to get some answers. Is it an issue or is it an egg quality issue, I can't seem to get a straight answer and I am so frustrated. I feel like I can't take the enxt step because I don't know what the problem is.

Keep asking the questions as they are helping people like me. I have also considered surrogacy but I want to use our embryos and if its an egg quality problem, surrogacy won't solve it!

Anyway, hopefull someone can help us with this one.

In any of your cycles have you had a BFP?






 

·
Registered
Joined
·
12,048 Posts
Tweets I had also not had an AMH being and ARGCer and they don't use them, but in fact I had it at the Lister recently and it came back 0.7 !! so v low which therefore has put be in a natural/mild IVF route instead of back to ARGC ( who will not do natural IVF for me). I am also using surrogacy.

L x
 

·
Registered
Joined
·
959 Posts
have you ladies looked into being tested for clamydia, mycoplasma etc with your menstrual blood. I tested + for mycploasma after my last BFN and have just finised a course of anti bitotics...apparently this can lead to impplantation faliure?
 

·
Registered
Joined
·
2,654 Posts
Discussion Starter · #7 ·
Wow ladies!!! Thanks for getting back to my post.  All opinions are very welcome.  I believe that you can only make your mind up by weighing up the pros and cons.

Needjustone - Yeah thats what I thought too but I thought I would ask incase anyone else had been told anything different by their clinic.  I have considered this test... I just don't know.  All the costs add up. I suppose I could just go ahead and do everything... but when such costs are involved - not the antibiotics, but more so the tests (don't the tests come to approx £400??)  .... just not sure... I hope it does work fr you.  How long did you take the antibiotics for?  Did your DH have to take them too???

Agate - scary to be able to know how long an individual has left to go to the menapause.  I suppose it could prove an important bit of information though!!! Providing it can be relied upon.  However, I am sure that if anyone had this info, it would not stop them from wanting to try... and I am sure there are ladies out there that get results that point to a negative direction, that still beat the odds and get pregnant...

Sunnythoughts - We are in a similar situation aren't we.  I also tried Humira, once before my 2nd IVF (2 injections) where it had no affect.  The next time was before my 3rd IVF (ARGC) and this time I had 4 injections.  My TNFs went up after the 1st 2 then they went down after the 2nd 2 injections... but it has never been below 30  :(  and had the IVIG too and still no pg.  So it is a matter of - do we do it again or dont we.  Apparently Dr Gorgy gives it for longer however, i am just not keen on being on Humira for so long.  I never ever got pg with IVF.  I got pg once before any tx had started but it was a blighted ovum and then a 2nd time after the 2nd failed IVF (which the clinic put down to the recent Humira and IVIG).

Dr Gorgy believes that TNF levels can damage your eggs, and that you need to take Humira for a few months, keep levels low for a few months and then do IVF.  But what I don't understand is that, at what stage do the TNF levels actually start to damage eggs??? Aren't we born with all our eggs, so are they all damaged from the TNF levels.  Orrr do they only get damaged by the TNF levels when they are being stimulated and are growing???

I mean, I know ladies that only took Humira and got PG - how comes they did not need to take it for months and months in advance???

Out of interest, Sunnythoughts - did you have tests done such as Blood Karyotype test, or did you get your DH to have the Sperm DNA Fragmentation tests???  We had all these done so have eliminated it being a Chromosome problem or a sperm problem.

JJ1 - yes ARGC don't really go by that test - probably because people with low amh still do get pg and have babies... Thats great that you are going down the surrogacy route.  can you please explain the Natural IVF cycle to me that you are having done at the Lister... I wonder if this is something we should look into...

PS - it is hard isn't it... I feel like I am constantly trying to climb up a glass wall, and keep sliding down.  Today i found out that a friend is going to have her 3rd baby.. I am so thrilled for her but can't help but feel totally left behind in the game.  I know it is not a competition or anything, but I just feel like I am in a 'stalemate' position... its hard when there is just not any progress when you try so hard

Thanks soooooooooooo much for your messages.  It helps me a lot and I hope it will help others too.  ^hugme^  ^hugme^

tweets xx
 

·
Registered
Joined
·
73 Posts
It is a comfort to know that you are not alone isn’t it. I like your glass door analogy. I feel like I am stuck in a pit of treacle, then I see a rope, grab it, thinking it’s the way out, then  the rope breaks and I am stuck again, back in the pit of worry, fear, frustration, puzzlement, time ticking!!!!. I continuously try to problem solve in a logical way analysing all the potential problems and brainstorming solutions to the ‘possible’ problems. All my friends are onto their 2nd kids and I am not even off first base, it’s just so frustrating, all of them conceiving within 3 months, can you imagine – I can’t! I feel like I am doing absolutely everything and just getting nowhere.

I have decided that I am going to use Intralipids next time. Posts on here have shown that intralipids can also reduce TNF so going to give that a go as I don’t want to pay for more Humira at £800. Trying a combo of Prednislone and Intralipids seems to work for other ladies, maybe keeping it simple would be worth a go. Not sure.

I have also wondered at what stage the TNF acts on the eggs. My consultant said that eggs are ‘recruited’ three months in advance of them being ovulated. This would tie in with what Dr G is saying. Some ladies use Dexamethasone (a steroid) from Day 21 of their previous cycle to improve egg quality and egg quantity (not that you have a problem with the latter). Also DHEA is mentioned to improve egg quality.

Mine and DH’s chromosomes are OK. Havn’t done the Sperm DNA testing, not sure what value that would add as we have ICSI anyway, just to maximise chances, not for a MF reason.

Have your consultants given you any indication of what the issue could be? Surrogacy seems drastic to me, but again I would do it, if I thought it would solve the problem (but don’t know what I am trying to solve)!

Keep posting will be good to hear how you get on.
 

·
Premium Member
Joined
·
15,864 Posts
Tweetiepie said:
All the costs add up. I suppose I could just go ahead and do everything... but when such costs are involved - not the antibiotics, but more so the tests (don't the tests come to approx £400??) .... just not sure... I hope it does work fr you. How long did you take the antibiotics for? Did your DH have to take them too???

Dr Gorgy believes that TNF levels can damage your eggs, and that you need to take Humira for a few months, keep levels low for a few months and then do IVF. But what I don't understand is that, at what stage do the TNF levels actually start to damage eggs??? Aren't we born with all our eggs, so are they all damaged from the TNF levels. Orrr do they only get damaged by the TNF levels when they are being stimulated and are growing???

Out of interest, Sunnythoughts - did you have tests done such as Blood Karyotype test, or did you get your DH to have the Sperm DNA Fragmentation tests??? We had all these done so have eliminated it being a Chromosome problem or a sperm problem.

can you please explain the Natural IVF cycle to me that you are having done at the Lister... I wonder if this is something we should look into...
tweets xx
if you sort the samples out yourself and send direct to locus medicus - each bug is 90euros to test for.

the different antibiotic regimes for different bugs are in the faq

until they mature into antral follicles and then into mature follicles in a given cycle the eggs are in an arrested state - the theory is that they will be more vulnerable during the time that they are gearing up to be cycled - so although they may all have suffered some damage the ones that are nearing maturation whilst still in a high tnfa environment are thought to be the most heavily damaged - according to dr b's theories anyway.

some docs think that with poor response/poor ovarian reserve the best strategy is to go for high doses to try and maximise the number of eggs available - others favour mild ivf and say that you should use low doses or even no stimms drugs at all and aim for just small numbers of eggs in the hope that they are excellent quality.

blood karyotyping only tells you about any large scale permanent genetic anomalis you have - it doesn't tell you about genetic errors that a particular egg or sperm may have - the only way to check that is to use PGS - where the individual eggs/embryos are tested to see if they are euploid (genetically ok) before they are put back.

icsi cannot guarantee to select genetically ok sperm - sperm can look normal but still be aneuploid or have fragmented dna - but it is less likely if count, motility and morphology parameters are normal

hope this helps
 

·
Registered
Joined
·
959 Posts
i set mine off myself as agate said. It is extra money and DR G told me about it in June and i didnt do it. Not everyone believes that mycoplasma can be the cause of BFN but you know what in the grand scheme of things these tests are not that expensive and if you are + then the treatment is very cheap. i paid £58 for me and DH - yes he has to take them as well

I would recommend you get all 3 tests done: clamydia, mycoplasma and ureaplasma

good luck xx
 

·
Registered
Joined
·
52 Posts
Tweetiepie,
Me again, snowing and nowhere to go, so quite good to catch up on everyone's news.
Re your question about the AMH test, I wouldn't recommend it. I see from your signature you suffer from PCOS, you will naturally have a high AMH level in that case, but it wont necessarily give you an idea of what you are really looking for, ie how many years left wth your reserve.  Looks you are reacting well to stimulation and making lots of follicles, so like I said on my other post, if you are going to spent any money, I would advise you to do it on the C test and check that that isn't causing any problems to the quality of your eggs.  If you have high TNF this might be caused by untreated C. So many ladies on here didn't expect to have C at all and once cleared seemed to go on to have a BFP, there must be some truth in it!
Like you, we have been trying to conceive for nearly 9yrs now and all our friends now have their families and you just feel so left out, so I totally understand how you feel when yet another friend tells you about being pregnant. It's very hard and cruel for anyone to have to go through what we are going through and no one that hasn't gone through this really understands how hard it is. Keep believing in yourself. I really hope for you you get there soon. Best of luck!
 

·
Registered
Joined
·
2,654 Posts
Discussion Starter · #12 ·
Sunny - I feel exactly the same way about Humira... as it didnt really have a dramatic affect on my TNFs.  We have always been told that it is immunes.  BUt when we did the surrogacy and it failed it made us think... then again no IVF has a 100% success rate does it... just that I found the last cycle very hard having to go into A&E twice and got ohss, so thats what put me off the fresh cycles... I am kind of hoping to do IUI with all the immunes rather than IVF... At least with IUI you can try a few times in a short space of time???  And no mad number of eggs...  We did FISH and DNMA Fragmentation test on the sperm, not because of any male Factor problems as Dhs swimmers are good.  However, I wanted to kind of be 100% sure that there is def not a problem there - since it is easier to test sperm than it is to test eggs... Also, if you have Bupa - they would cover the costs as Investigations... we went to Dr J Ramsay - he is a urologist.

Agate - Thanks for all of that info - you are a star!!!  I had a bit of a lighbulb moment earlier when making my cereal... lol.  But, do you think IVM, where they remove immature eggs from your ovaries and mature them in a petri dish, would help ladies that have eggs that could be potentially damaged by the TNFs??  Or maybe the 3 month rule applies where they are already damaged by that time???  I suppose the best test is the PGD test... then again, that would tell you about those embies... if you only get 2 blasts at the end then maybe that is giving you your answer... that only 2 are normal, and that, apart from that it may be immunes or eggs or a combination of immunes and embies...

Needjustone - did Dr G accept you doing the test yourself???  As in did he not mind giving you the prescription for the antibiotics?  As at the ARGC they only like for you to have the tests done via them, otherwise they do not like to interpret the results for you... (I remember this being the case a couple of years ago, but I am not sure what the deal is now to be fair)...

Mickey -  thanks again ... yes I guess it is not that much in the great scheme of things.  I will look at how to have the tests done independently. Good luck to you too

PS - so where can I find the directions of how to get the Hidden C, Mycoplasma and Ureaplasma tests done??? I know you have to send the mentrual blood off, but do you also have to send the Sperm abroad too (lol, it all sounds rather yuckie  :p  ;D  )





 

·
Registered
Joined
·
52 Posts
Tweetiepie,

The tests are very straightforward, you just send a sample on d1 or d2 of your menstrual bleeding. See how to do it on Agates FAQ. The address of Locus is also on there. Best way of sending is with Fedex. It cost me about 45 pounds. But some ladies send it in the normal post. It last for quite some time, so there isn't the urgency like with some of the other tests. Dr G will prescribe you the AB's even if you have done the test independently. You might have to pay him a consultation fee though.
 

·
Premium Member
Joined
·
15,864 Posts
tweetie:i suppose ivm might help but so far it is only really viable for pco ladies - you need a big population of antrals to do it on - and so far, the success rates aren't great.

also bear in mind that infections and immune problems can be related - the ongoing infection may be the cause of high nka and tnfa - and they may drop once its gone - that is what serum are saying and it seems to be true anecdotally from ladies on ff who have retested their immunes after clearing chlamydia.  i'm not saying that all immune issues are caused/exacerbated by undiagnosed infections but it seems that they sometimes can be.
 

·
Registered
Joined
·
959 Posts
yes i did the tests independantly and i went to Dr G for the PX, I paid £120 then the costs of the drugs. Go to asda, mine cost £58 for me and dh

I can tell you waht you need but you wont be able to get a px

Check this thread..it gives info on how you can get the AB without a px, if i wuld have know i would have done it this way..
 

·
Registered
Joined
·
2,654 Posts
Discussion Starter · #16 ·
Mickey - Thanks for your message.  My AF is due about 5 days before Christmas now so it might be awkward to do the test only because the lab may be on holiday or something - I dont really want to risk it really, whcih is a shame cause I would have liked to have got it done and dusted.  £45 is not too bad for a Fedex Charge.  I take it the Hidden C test cost 90 Euros and am I right to think that testing for Ureaplasma and Mycoplasma cost an additional 90 Euros each??

That would make it a total of 270E (which is approx £226 in sterling) + approx £45 for the fedex. So it would come to a total of £271 approx

If done via Dr Gorgy, it would cost £400 if I am correct.

Meaning I would save about .... £130

Not bad hey... Maybe I should just go for it

Needjustone - what did the £120 cover exactly? 

Agate - do you know anything about this thing to do with the Herpes Virus??  I used to get terrible outbreaks on my nose, but no longer do.  I have a feeling that my immunes have gone up so high that it just does not happen anymore.  How would I get around that??? Since it is a virus, it is not curable, it lays dormant .... I read something on the Locus site that they use antiviral meds to deal with this... would they still do this if you do not have any coldsores??
 

·
Premium Member
Joined
·
15,864 Posts
tweetie -i am not sure but i think antivirals like zovirax don't rid your body of the herpes virus - but they can shorten the length of attacks - diet/lifestyle can also make you more susceptible to attacks e.g., too much arginine compared to lysine, not enough calcium, not enough vit b12, too much stress - so maybe your lifestyle has changed?

£120 i think is dr g's standard consult fee - face to face or by phone
 

·
Registered
Joined
·
2,654 Posts
Discussion Starter · #18 ·
Agate - thanks again.  Well, I do have loads of calcium as I dont care and eat eggs everyday as well as cheese.  I have been taking the B12 on and off.  I do think that my TNFs being in their 60s helped though... but unfortunately stopped me getting pg  :(  I reckon the stress factor is de to not working for quite a few years  ::)  the things we do to get preggers ey

I must say though you have a medical head.  I mean I have at times been asked what i studies etc, in consultations, but I think you go above and beyond what read about and can understand... So impressive!  So, what do you do for a living  - I am very curious  :)
 

·
Premium Member
Joined
·
15,864 Posts
I could tell you, but then I'd have to kill you! :)

cytokines in the 60s!  yowzers!
 

·
Registered
Joined
·
2,654 Posts
Discussion Starter · #20 ·
::)  lucky me hey... damn TNFs  ^bigbad^
 
1 - 20 of 20 Posts
Top