Assisted Conception (and all the bits that go with it) volume 9

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A new snug for us AC ladies

Josie - your consultants sounds harsh... yes the success rates of ivf means a first time success isn't guaranteed, so realism and stats may help, but yoru dr sounds like they have done the job too long and lost passion for it!! however, it may not be that consultant who does your Egg collection etc (mine wasn't when nhs funded, they work as a team on a rota where I went) and you may find better staff. Also, if you are NHS funded and they cancel the cycle that could be because you didn't respond to the drugs very well and if they cancel the cycle they are allowed to change your protocol and you get another go free on the NHS which is fantastic!! So if you don't respond and they suggest cancelling the cycle is it worth asking them if they would change your protocol and drug regime (there are various ways of doing it - my clinic said they would increase the stimulation drugs to start with the 2nd time so get more eggs!) to help a 2nd go if needed.

SBC - welcome, I remember you from CB thread. I had immune treatment after testing, which is where we found our answer. I was under Dr Nduwke, who is now London based - he was so happy for us when we got pregnant!! He also told us to get as many Immune tests for level 1 from our gp... so we typed out the massive list (to make it easy for gp) and he agreed to fund all, although 2 in the end couldn't be done. We then got print outs of all results to use for our treatment etc. Paid for level 2 tests, despite clinic saying try 3 cycles first we thought 2k was cheaper than another 2 cycles (and am 35 weeks pregnant now). If you NHS funded you may be able to take that NHS funding to more than one hospital if you didn't want to stay where you are now - eg go to the Lister etc. Easy to phone the other clinics and ask if they take your PCT's funding. That is what we did, took our NHS funding to a private clinic!

Hope all goes well on your maternity leave Lissy.

Keizah to you have the list did you see him at care?

Bugsy yes i did see him at Care, but he has moved now to London where he is based at the Zita West Clinic, but it means he sees you from beginning to end of your treatment (which never happened at Care), however he has longish waiting lists as he is so popular. The level 2 tests go to Chicago so do take some time to come back. Frustratingly I can't just send the handy Excel spreadsheet but will try to send you it in a long list - don't worry they don't do that many blood tests, but I have included everything in great detail:

1. Full Blood Count: WBCs RBCs HB Haematocrit MCV MCH MCHC Platelet count Neutrophil count Lymphocyte count Monocyte count Eosinophil count Basophil count

2)Fasting glucose - Serum fasting glucose level

3. Liver Functio Tests: Serum total bilirubin level Alk Phos ALT/SGPT serum level Serum gamma GT level Serum total protein Serum albumin Serum globulin

4)Urea and Electrolytes:
Serum sodium
Serum potassium
Serum urea level
Serum creatinine
GFR calculated abbreviated MDRD

5. Thyroid Function Tests (both free T4 and TSH):
   Serum TSH Level
   Serum free T4 level
   Serum free triiodothyronine level

6. Thrombophilia Screen:
   Anticardiolipin antibody IgG
   Anticardiolipin antibody IgM
   Anti thrombin 111
   Factor V Leiden
   Factor 11 Prothrombin gene
   Prothrombin Time
   International normalized ratio (INR)
   APTT (ratio of 0.9)
   Fibrinogen
   PAIP Polymorphism
   Activated Protein C Resistance
   Protein C
   Protein S
   Lupus Anticoagulant
   Methylene tetrahydrofolate reductase gene mutation (MTHFR)

7. Autoimmune antibodies:
   Anti-nuclear antibodies
   Thyroid peroxidase antibody level
   Anti-mitochondrial antibodies
   Anti smooth muscle autoantibod
   Anti liver kidney micro ab lev

8. Karyotype - this is the only test that BOTH you and DH/DP needs in level one tests.

I also had my prolactin and Vitamin D tests done which Gp did. Gp did all but 2 parts of the Thrombophilia screen for me. The Karyotype is the main expense of level 1 tests. It was vital to get print outs of each test results with as what the labs or Gp (ie the NHS) say is ok for fertility the Consultants that do Reproductive Immunology don't necessarily agree - for eg thyroid level for pregnancy should be below 2 (well they just changed it to below 2.5) whereas NHS says below 5 is ok.

Level 2 tests (often known as Chigaco tests) - there were 2 packages you could have, one with less tests and so cheaper and one with all of them (we did all of them, didn't need to in the end but it was for peace of mind, and at the cost of a consultants appointment was worth it. Saying that Dr Nduwke charged when we saw him no extra cost to go through the results - not sure what he does now, but all his prices are on the Zita West website or you could phone and ask. ARGC and Lister do Immunes also in London, as does Dr Gorgy (some people report him harder to understand and he is well known for charging you for EVERY phonecall and if you don't ask for something on prescription when with him he will charge you again etc etc). Depends what you are wanting - speed, locality etc etc.

Level 2 tests:
NK Assay
TH1:TH2
Intracellular cytokine ratio
HLADQ alpha for you
HLADQ alpha for dh/dp

For me I found I was just a bit too high on thyroid, had 3 thrombophilia factors (and as one is recognised by NHS the NHS paid for my injections which was helpful!) and had raised NK cells and inbalance on TH1:TH2 (last two were level 2 tests) so was prescribed: clexane injections, levothyroxine, prednisilone, 5mg folic acid (as coeliac) and in total had 3 intralipid IV's as well as a higher dose of utrogestron pessaries, and from 8 weeks pregnant have had a daily aspirin at 75mg. Had to start some drugs before IVF cycle - but that was enough for me to have a natural bfp, then Dr George Nduwke (known as George!) prescribed me the rest to maintain it. Total cost of consultation, tests, all medication and the admin fee to Care for getting a natural bfp (latter admin fee was £300ish) was cost of half a cyce of IVF (including drugs).

For us it was the answer - not necessarily for others, but I couldn't cope havign repeated failed cycles (only got 4 eggs, only 1 to transfer, none to freeze) without doing these tests. Really recommend people buying and reading the Dr Beer book (about £10) as it made real sense to me.

Sorry for essay - but thougth a few people might like to know and I have real insomnia right now!!!

Oh - some of level 1 tests are what NHS carries out when people had 3 miscarriages and therefore qualify for further NHS investigation. George explained that for some people Immune issues explains lack of natural conception and for others immune issues are why they miscarry. I think there are several good places to go for immune testing and treatments but many of them are based in London. Notts Care, where George was based say that he passed on his expertise to them, however my own personal experience when having a review with the main consultant who now claims to be their immune consultant told us 2 things which we (and George) disagreed on: (1) due to a condition I had it wasn't safe to have intralipids and I would have to have the more expensive IVIG which she didn't think I could have either (er, actually if my condition deteriorates I will be on IVIG for life and can have intralipids!!) and (2) It was unlikely I would have immune issues and she recommended 2 more privately funded cycles before having the tests. So I am slightly biased I am afraid. When saw George, first thing he said was because I had hayfever, asthma, coeliac plus this other condition is was highly probable i had immune issues for pregnancy and he was right. So what I have learnt is that some clinics say they treat immune issues but some offer a standard treat all package whereas others have real specialists in their fields (ARGC being another one - am trying not to be biased!!) and tailer the package to the person and test results. I think in Mancheste care Mr Patel is highly recommended for immune patients if anyone nearer there than london.

Thanks keziah we went to care as good clinic quite nearby. Now they want to do level 1 and 2 tests as have had 3 mc since ds. So who is it that has taken over from George. Think we will get results then see ask on here maybe cons at Manchester. Interestingly neonatal pathologist NHS suggested immune testing so some believe in it. Sods law George left .

Am I right in thinking you started at care and then followed George

I was told it was Maha taken over from George (and it was immediately after, no idea if they have anyone else since) - but if you get the tests done at Care notts, where George was based, they are your results and you are entitled to have a copy of each result - so can then take them anywhere else if you wanted a 2nd opinion of them, or treatment elsewhere. And they were very good at doing the tests.

Thankfully didn't have to follow George as I was 8wks pregnant when he left! It is a great loss and so frustrating to have so many good immune doctors in London area if not there.

Great the NHS person recommended them too .... after 3mc the NHS seem to take more of an interest.

bugsy mojangled and others - I have found this thread really helpful in helping me to understand everything re immunes. She is not a doctor or a nurse, just a patient who has gone through it all and shares her knowledge. www.fertilityfriends.co.uk/forum/index.php?topic=242395.0

Thanks keziah for sharing your knowledge too. Very thorough!

I finally spoke to the clinic today - so, to confirm all other levels ok, but CD56 (26.5) and CD19+5 (24) are raised. Should be below 12 and 10. I fear that if my levels stay above recommended levels then IVIG and/or steroids would be called for. The plan is to confirm whether short or long protocol next week and then start accordingly either towards the of next cycle or beginning of one after that, with repeat of the raised NKs to re-confirm status once we make a start with stimms. I'm going to try low GI diet for next month to see whether that will help.

I have to admit that I've felt utter dispair for the last couple of days. Many a tear has been shed and when I heard that they would recommend IVIG I'm not quite sure what my final decision will be. We'll go ahead with the IVF as planned (provided I still have a job next week - we're going through reorganisation...) but I need to give myself more time to understand and come to terms with everything that is involved with the immune drugs.

How are you all? pocket how are you coping? italian I hope everything is ok with you and family. lissy hope you're enjoying your maternity leave. teds you must be showing by now? josie I hope your experience with your clinic improves with time. lucy thanks, I do find Dr Beer a bit hard read at times, but I'm getting there. sunny have you met with the other clinic yet? Hi to everyone I haven't mentioned and welcome to all the newbies!

Scrummy glad you got your results. Would they consider intralipids rather than IVIG - which many clinics use instead of IVIG as (a) cheaper, (b) little or no side effects with intralipids due to what they are? Might be a middle ground? I found steroids had minimum/no side effects and would definitely take them again (they work, they are cheap, people use them for bad asthma all the time etc etc), which I had for raised CD19+5. Hope worting out your protocol goes ok.

Hi gals hope everyone is doing okay.

bugsy how are you my dear. Sending you a big 'I know what you're going through' hug.

scrummy that is a great link on immunes. Wow she is a clever lady. I'm still a bit lost on it all - I was on 20mg prednisolone per day but I'm not sure if that is in the same ballpark. Any thoughts gratefully received.

My op is tomorrow. Am dreading it - been really teary today. Can't wait for his to be over.

Chocolate boobs to everyone

pocket I'm sure it will go fine tomorrow, but I fully understand how you feel. Will be thinking of you tomorrow.

And yes, she is clearly very clever and it seems she has unfortunately had to learn a lot during her journey. I can't advice you on your dose I fear as still trying to understand it all myself. I hope the others can help

And keziah I will have that discussion with them re which med - thanks for the suggestion

Just popping in quickly, off to see the ivf nurse for my first appt tomorrow, wish me luck! Very scared (and a bit snappy if I'm honest) today but not as bad as I expected I would be

Pocket I hope everything goes ok tomorrow, I'll be thinking of you too

Good luck today josiexxx

Good luck Josie x

bugsy and Josie good luck today and hello to everyone else

Consultant has told me to give it one more go with a different dose to see if I respond before I think about donor eggs. Will start in next couple of months

Hope you are all well and also hope to see some good news on here soon it's about time!

Pocket- Hope everything goes smoothly for you. Take it easy and get lots of rest...

pocket thinking of you today and hope all has gone okay xx.

Sorry could not see thread!!!
Pocket hope yesterday was not too bad

Thanks for all your kind words and wishes. I'm all done, it wasn't as bad as i'd expected and am resting as advised - I feel so relieved that its all over. I have an appointment with gynie consultant in 3/4 weeks to check up post op, and thereafter I'm guessing I can get back on the ttc bus.

I've just been thinking how brave and determined we all are. Despite all the set back and hurdles, we keep on going - look at how we get straight back up and keep ttc when we've been given bad news by a consultant, BFN, had a mc, erpc, low egg reserve news etc etc etc. Blimey we are a blooming strong bunch arent we!

Lissy hope you've got your feet up and are resting!!

Scrummy sorry to hear you're facing immunes and work stress. When will you know about the work reorganisation? Hope you get some good news on both very soon.

Love to everyone

xxx

Glad to hear it wasn't too bad Pocket. Make sure you look after yourself

My appt was ok but I struggled to keep it together, and when the dr went out to get my prescription I did well up a bit but managed to pull myself round. They should have couches not two separate chairs, some couples like physical contact when being told you're starting ivf. Anyway, our starting date is 19th Feb (a week on Sunday) and I'm counting the days. Thursday is our appt with the nurse to learn how to do the injections. I was hoping they'd give me the needles so I could get used to looking at them but I won't get them till Thursday. I've got my prescription though so I'm trying to look at the bottles regularly so they don't freak me out when the time comes to start injecting. Had another blood test to check my kidney function (I knew I wouldn't get out unscathed). I've been very very angry and snappy recently but I'm trying not to hold back too much as I need to let it out, and people know why I'm snappy so they should cut me some slack. Feeling slightly at my pg friend who has been complaining about her situation and 'constant worry about birth' which she's never mentioned to me before and I feel like screaming at her 'I'm starting IVF for f*s sake!' but I won't.

Hope you are all well x

pocket really glad to hear it went well and wasn't as bad as expected. I hope you get to take it easy next month and enjoy yourself. I've had no news about work, but expect to hear something today or Monday at the latest. Thanks for enquiring. And you're right, we truly are amazing women!

josie things are really progressing for you. You might want to have a look on You Tube how to give the injections, just to get used to the routine. That way you may feel a bit more relaxed (and more informed to ask questions) when you meet the nurse. Try not to let your friend get to you. We all have our paths to travel and we all have our battles to win. And people will only tell you what they want to tell you, so you never quite know what is happening in people's lives. Just focus on your journey for now - one step at a time.

weller really glad to hear your news! will be cheering you on!

AF is making her way here, so I'm glad to see that my cycle is fully back to normal now after Clomid and Cyclogest. Obviously not glad about AF but I've come to accept that. Will be heading for my bloods on day 2. I'm feeling much more relaxed About the immunes too (I think my hormones have been playing havoc with my mind recently) which is good.

I hope you all have a great weekend!

Hello (pokes head in nervously and waves). Have been lurking for a little while but think this is where I belong now if you lovely ladies will have me. We see our consultant on Tuesday and were due to start IUI but just found out that dh's SA results are worse again, so looks like that's no longer an option. Assume it will now be ivf for us which still need to get my head around. It's really the medication that worries me though and we are with create so we can have no or low med option which is fantastic and does put my mind at rest even if success rates are slightly lower. Just counting down days now till appointment - used to be a time when valentines day was full of romance - and in fact I asked dh out on our first date on valentines day 7 years ago - now here we are going to first ivf appointment. Very romantic! That's enough complaining for now though as I know I have a lot to be grateful for - happy Friday everyone

Pocket I'm really glad it wasn't too bad. That's it, all over now my dear and now, just onwards and upwards from here.

Scrummy glad your cycle is behaving itself and good luck with your next stage. I had to have IVIg again yesterday. It's a bit of a drag but I should only have maybe 1 more left. I don't know what your concerns are about IVIg, but if I can help at all please just ask away (or PM me if you'd rather). I'm still not 100% comfortable with the whole blood product thing, but having researched a little around how it's screened and produced I feel extremely reassured. I'm also reassured by the 100s of women at ARGC who have it every month; there's a conveyer belt of people all waiting to go downstairs to be hooked up. And how expensive it is is a whole other thing (but that's because of how much it goes through to make it safe). Anyway, I hope you resolve what treatment you get with ARGC and feel happy and confident about what will be happening.

Welcome MiniH I hope we can be lots of help and support to you on your journey.

AFM, I had an early (16 week) anomaly scan on Wednesday and got the all clear. I can't tell you how relieved I am. I have told DS (he is v chuffed) and will slowly start to tell other people.

Have a good (if chilly) weekend all x

Pocket- I'm so glad to hear that things went well. Get rest, let DH wait on you hand and foot, and now onwards and upwards!

Scrummy- I hope you continue to feel better about having immunes treatment. I think it's worth it just to think about ARGC's high success rates, and the fact that so many women who couldn't get pregnant or carry a baby to term are having children with ARGC's attention to detail and their immune treatments.

Josie and MiniH- I don't know how to put this without sounding condescending, but I'll give it a shot. I never knew that four years ago I would meet and marry a man in a wheelchair, and I never thought that the only way I would be able to get pregnant was having IVF/ICSI. It's the only way I've known to get pregnant, but as I'm imminently about to give birth, it doesn't matter to me either way. It's certainly not an easy process, just as ttc for as long as you have hasn't been an easy process. But it's so worth it in the end, to hold that longed for baby. What did I experience? Lots of mood swings with the nasal sprays and shots, so make sure to alert your DP's. Forewarned if forearmed, I think. Let them know not to take it personally. The stimulation shots are really not terrible, but then again, I'm not too bothered by needles. Get some arnica cream for the bruising, it really helps. Drink loads and loads of water. Try and get as much rest as you can. Stay as optimistic as possible. Each clinic is different in their approach, obviously. Being at ARGC has spoiled me, as they were so intense and so thorough, but I also learned not to be afraid to ask questions...it's your right to know, and we're certainly not doctors!

weller- Yay, that's excellent news! When will you get started again?

lucy- Glad to hear scan went well! Breathe a huge sigh of relief...

Italian- How are you, love?

Keziah- How are you feeling? Getting closer and closer...

Teds- How about you? How are the little bubs treating you?

AFM, last scan on Monday was great, although the abdominal circumference measured a bit high on the normal range. I was told that this was totally normal for women with gestational diabetes. It just means she has a little chunk on her belly. But the midwife reassured me that you want to have a baby with a beer belly, so there you go. I'm going in for a sweep and stretch on Tuesday morning, and if that doesn't result in labor, I'm still a go for an induction on February 20. Still can't wrap my head around it! Upstairs neighbors are at it again with all the obnoxious noise, so even if I do manage to get a little sleep, I'm woken up by the banging. Thankfully we have a family friend who is a lawyer, and who is helping us out with this, as well as other neighbors who will write a letter confirming all the noise. Not what I need when I'm this close to labor, I can tell you that! Other than that, just trying to rest and take it easy...

Have a great weekend everyone! Waves and hugs and chocolate boobs to everyone I missed...