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  • "pheobe" started this thread

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Reg: Mar 18th 2010

Children: Little one on the way....so excited long awaited!

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Wednesday, May 25th 2011, 11:26pm

FET with Clexane, am I being fobbed off?!

Well an interesting afternoon - abit upsetting as my head is all over the place!

Had a nightmare with Bupa trying to get them to agree to Immunology tests - they are having none of it.....grrrrrrrr - platinum cover, they just have no idea what immunology is and telling them over and over again makes no difference. Anyway it may be an omen.

Had our review today at Bourn with Maz Khan - what a lovely guy. He goes in to so much detail, was with him for an hour! Turns out 'like no one has said before' that my AMH levels are quite low 11.7 - everyone else has said this is good so hey! Either way he said I don't respond accordingly and pleased with both cycle responses. He said hubby has low motility, yet his sperm is performing to Day 5 blasto's so again he is not concerned there. So he suggested possible implantation issues.

His remedy for this was that a study and stats proved that Clexane and Asprin have proved to reduce any clotting which causes they think implantation issues and as they liken it to reasons behind miscarriages and they reckon 70% success rate with people who have had miscarriages . The side effects are associsted to think blood and bone thining - but rectifys after stopped taking drug - so nothing too harmful and have to have a calcium rich diet - good i love cheese and milk!!!

I tried to go down the the immunology route but he said what is the point, they will only want to give steriods or clexane - i think what he was trying to say was we should try and treat a possible issue and he really pushed (in a nice way) to have a FET - I think because we have three embies. Anyway after many questions, he put my mind at rest about age and how they wouldn't need to do assisted hatching as they assess the egg shell before implantation and consider it if there appears to be an issue.

I figured if FET and next fresh cycle doesn't work then we will do immunology - hopefully it won't come to that

I am going to have a Thrombilia blood test to see if there are any clotting issues....prior to FET.

We are on hols in July so he suggests just after will be the best time.

So that is the story so far....... feel abit down today yet I should be excited
Me34 DH40
MF LC/Poor MOT
Sept 2010/Apr11 - 2 x icsi -BFN
FET Sep11- 3 No Thaw
Dr Gorgy Jun12 :BFP:
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Thursday, May 26th 2011, 8:04am

Haven't got much to add but sounds like this Dr knows what he is talking about. Im on celaxane and asprin as have blood disorder and it's fine (you do get lovely bruises though!) Took similar all through last pregnacy with no problems.
Good luck xxx
PCOS + poor mobility = ISCI April 11

Age 40 so odds against me! :8o:

xxxxx

:BFP: 24th April!!

Baby Lily arrived 16th Dec 2011


  • "pheobe" started this thread

Posts: 498

Reg: Mar 18th 2010

Children: Little one on the way....so excited long awaited!

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Thursday, May 26th 2011, 8:07am

Thank you, just think poss they are clutching at straws as I have I no obvious problem but perhaps implantation issues??
Me34 DH40
MF LC/Poor MOT
Sept 2010/Apr11 - 2 x icsi -BFN
FET Sep11- 3 No Thaw
Dr Gorgy Jun12 :BFP:
bab22 Evan born 25/01/13 perfect baby7

ruthie

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Thursday, May 26th 2011, 8:27am

It depends what you want to do. If you go down the immune route, you will almost certainly be on clexane and aspirin. Most immunies are. BUT, if you have the Chicago tests and they find problems, you'd end up on a lot of other drugs too. There are no right answers, no one can tell you for sure whether or not you have an immune problem but I think his approach is a bit half hearted.

I think docs should either accept that there isn't clinical evidence like trial data for immune treatments, but be happy to support them, or say hand on heart,"I don't believe in immune issues, you can't have treatment."

He seems to be sitting on the fence quite a lot. Actually the only evidence for aspirin and clexane and miscarriage prevention is in 2 very specific situations.it is known to help for women with a diagnosed clotting problem, and it's known to reduce the risk of second tri losses in those who have already suffered a second tri loss. Neither of these is currently applicable to you.

I'm not saying I don't think you should have them, merely that I do think he's fobbing you off. If you've got immune issues, you would prob need a lot more drugs, if you haven't you don't need anything. The chance of you being a patient who can be treated with clexane and aspirin alone seems quite small.
Hope that makes sense.

  • "pheobe" started this thread

Posts: 498

Reg: Mar 18th 2010

Children: Little one on the way....so excited long awaited!

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Friday, May 27th 2011, 10:03pm

Thanks Ruthie. Think I may see how I get on with first lot of bloods thru the GP.....it's hard to know what to do, I got the impression they wouldn't work with immunology meeds if needed. I feel on one hand to see how it goes with FET as we could have been just unlucky and then perhaps see about bloods before fresh cycle :( so confusing!
Me34 DH40
MF LC/Poor MOT
Sept 2010/Apr11 - 2 x icsi -BFN
FET Sep11- 3 No Thaw
Dr Gorgy Jun12 :BFP:
bab22 Evan born 25/01/13 perfect baby7

Scooby2

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Saturday, May 28th 2011, 10:23am

Hi Phoebe,

You do need to give the clinic a fair crack at it but after 3 transfers i would (I'm guessing nrerxt FET woudl be 3?) be tempted to get the testing done before another fresh cycle. I've had 8 transfers all good embies etc and FET, fresh cycles and used clexane, steroids, you name it we've tried it but, we haven't had the Chicago tests.

I know a few ladies on here will advise get the test done and see where you go from there. It's about £1000 for the tests and at least you know one way of the other before you embark again on costly IVF that may not work if there is an underlying issue.

We have a bit of a decision as the next round of IVF if it needs all the immune meds could end up being about £12k with ARGC so not something that we can do quickly! but we agree that just trying another standard £3-4K IVF round at a standard clinic is just like throwing money away as we've been down this approach so many times. So, for £1k we'll find out if there is some underlying issue and we can get some specialist treatment. it allows us to be at least informed.

I've always felt that with every transfer as long as we are trying something different then we've got a chance. Another option might be get the test done at £1K and use the output of that to tailor your meds for your FET.

Clinics are a bit sceptical about immunology and yes the treatment ( clexane, steroids etc) might be a similar treatment but may not be right for you and there might be a specific that is necessary. Ther is a growing number of ladies on here that are evidence that tailored immunology treatment is working. Maybe you aren't quite there in terms of attempts but something to add to the mix for your decisions.

Good luck and if you end up on Clexane, don't rub your tummy after the injection! It's nippy but rubbing causes the ugly bruises!

Scooby2 x

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Saturday, May 28th 2011, 11:53am

Hi I think you are being fobbed Off. I had 3 transfers with a clinic that did not believe in immunology and then changed clinic. Chicago tests done and proper protocol and I now have my baby.

Please don't waste more time and money on a clinic that won't treat you fully.
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Saturday, May 28th 2011, 8:29pm

Hi Phoebe

It is very difficult to know what is best to do. After two ICSI's it is quite possible that it hasn't worked not because there is something else wrong like immunology issues or implantation issues but just down to luck and % chances of it working. I think that it is good that your clinic are trying something else. Have you tried both short and long protocol? I had 9 tx before going for immunology tests. 3 fresh ICSI and 6 FETs. Each time something different was tried and I did have two BFPs which ended with early losses. I took clexane, steroids, extra progesterone, asprin etc.. I have just recently had the immunolgy tests which cost £1900 and they have found quite a lot of immunology issues.

Do I wish I had gone earlier for immunology tests? Well now that I know that I have immunolgy issues, the answer is yes and it is frustrating that because clinics don't believe in the immunology protocols that they don't suggest this as a possible option. At the time though I felt happy that the clinic was always trying different things. I do have an auto immune disease, so chances are I would have immune issues but I really didn't know that and the time and didn't think that immune issues was relevant to me. I thought that it was only relevant if you had lots of miscarraiges.

I think that you have basically got to go with how you are feeling. Maybe it's good to give it another go having an FET taking the clexane and asprin. It is a lot of money the immunology tests but it is worth it even if to rule issues out.

Good luck xx
Beanie5
Me 38 [zx076] DH 43
(ICSI x 4, FET x 6 - 2 early losses)
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Sunday, May 29th 2011, 6:40am

Hi

I just wanted to say that I had basic clotting tests done by my GP and my first clinic and neither showed up any problems - it wasn't until I had a more detailed screening as part of the Chicago tests that I found out that I actually have 2 genetic issues that both affect clotting!! When I got pregnant I had to stay on heparin until 6 weeks after I gave birth.
TTC for 7 years (MFI and Immune problems)
6 ICSI's so far all BFN
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Sunday, May 29th 2011, 6:58am

Hi pheobe,

I have been a Bourn patient and their official line is that they do not believe immune therapy works as there is not enough scientific evidence, that is why your doctor was sitting on the fence. I am sure he is not allowed to say anything else. They are however prepared to give clexane, aspirin ans steroids to some people. Some people with immune issues will only be prescribed steroids and clexane, as your doctor says. It all depends on what they find. I had mine done and they found quite a lot, but I already suspected it after the second loss that I had more problems than just age as Bourn said.

I went with them 3 times (well 5 if you count the cancelled cycles) and then I changed clinic. I would go with the FEt & clexane and then get the immune tests done before a new fresh cycle. You have only had 2 goes and no losses or chemical pregnancies, and on average people need at least 3 fresh goes before it is successful. Your failures could be due to other issues, maybe your DH sperm quality does not produce good embryos.

Give it a try and xfingers your FET will work!

  • "pheobe" started this thread

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Reg: Mar 18th 2010

Children: Little one on the way....so excited long awaited!

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Tuesday, May 31st 2011, 10:08pm

Ahh bless you thanks lovely ladies. As always I appreciate your feedback. Well the progress is I could just go for FET without getting at least all the level one tests done so off hubby trot to the docs today and we have lOADS of tests to do ;) no questions asked!

So going to get these done early next week then see what the outcome is. Do you think it is worth paying to see dr gorgy to decipher them....not sure any of the other docs know what is right and wrong??

Thinking then unless anything major develops will go with FET and clexane if that doesn't work then have level two done before try 3 fresh cycle!

Another question, the doc said clexane thins bones but only whilst you take it, i said I am a veggie nut not a vegan and he seemed to think that's ok, if eat Lots of cheese and milk.....do I need to worry about this?

If immune issues are found does that mean something bad for us in the future personally or is it just related to pregnancy issues?

God I am a worrier and it's not getting any easier no matter how much I try to rationalise everything!

Xx
Me34 DH40
MF LC/Poor MOT
Sept 2010/Apr11 - 2 x icsi -BFN
FET Sep11- 3 No Thaw
Dr Gorgy Jun12 :BFP:
bab22 Evan born 25/01/13 perfect baby7

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Wednesday, June 1st 2011, 8:05am

I've had level 1 tests and they showed nothing wrong, but the I had loads wrong with level 2. So personally I don't think they are worth it, unless you already have thyroid problems.
The immune tests they do are only to do with reproduction, it doesn't mean anything bad will happen to you.

As I said you may not have any as you only had 2 tries and no m/c. It might just have been bad luck, as luck (well chance) is one of the factors. Reproductive immunology is a new field and frankly it is unproven by proper clinical trials so a lot of doctors are against people having this tx as there is no scientific evidence that it woks, hence it is not available on the nhs and I am not sure private health insurance companies will refund the costs. There a re a few people here who have been diagnosed with immunological problems but then have gone and conceived without the immune therapy. Check Amazing Grace.
You don't need to worry about the clexane. Just up your milk and take a good pregnancy supplement.
Try and make the most of your FET and then worry about it later.
:xxx:

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Wednesday, June 1st 2011, 8:39am

I wouldn't bother paying Dr G to look at the level 1s. The whole point of those that they're picking up things that are proven to affect fertility, so if anything is found on them your normal doctors can sort it out.

It's unlikely to have implications for your future health, as you don't have any symptoms. For example my TNF levels (part of the level 2 tests) have been sky high, consistent with the levels found in patients with rheumatoid arthritis, but I don't have RA and whatever a blood test says, I still don't have it, so I don't worry!

Hope the bloods go ok.

Xxxx

  • "pheobe" started this thread

Posts: 498

Reg: Mar 18th 2010

Children: Little one on the way....so excited long awaited!

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Wednesday, June 1st 2011, 5:57pm

Thank you ladies!

Wow Ruthie just seen your signature, congratulations honey will go say this in the pink pages. I pray for you and I am keeping everything crossed you deserve this x x x
Me34 DH40
MF LC/Poor MOT
Sept 2010/Apr11 - 2 x icsi -BFN
FET Sep11- 3 No Thaw
Dr Gorgy Jun12 :BFP:
bab22 Evan born 25/01/13 perfect baby7

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