We finally had our phone consultation with the immune specialist doctor which we had waited six weeks for to discuss our blood test results. The GerMann downloaded a recording app on his smartphone beforehand so we could record the conversation in case there is anything we might miss. I was also worried that I wouldn't understand all the medical terms in German.
The doctor was nice and explained things well. The good news is that I don't have any indicators for an autoimmune disease, just the high NK cells by themselves.
I will have four different new meds to take as part of my treatment. The first is Thyroxine for my thyroid. I was surprised at this as my throiyd values were all within range. My TSH value was 2.30 (the range given is 0,34 - 2.50). However the doctor said that she would like to reduce that value and that 1 would be more optimal for pregnancy. I should be able to get a prescription for it with my general doctor and then she suggests getting the values tested again in four weeks.
The next thing is the intralipid infusion which I had been expecting due to the elevated NK cells. She suggests getting the first one between day 5-10 of the cycle before IVF, then between day 22-28 and finally after the egg retrieval before the transfer. If I get a positive pregnancy test then I would have to keep up the intralipid infusion roughly every two weeks. Possibly until the second trimester but I think I would be given another blood test to check on the NK cell levels.
Another drug she recommend is called Predisolone which is a steroid. I would start taking that after the transfer but in a very low dose which would then be gradually reduced once I get pregnant. The side effects from that are weight gain and insomnia. And the final extra medicine is called Granocyte. This is because I am lacking a few "KIR" genes which can lead to a higher risk of miscarriage and problems with the placenta development apparently and this I would take in injection form starting after the transfer. According to the website: Various studies (Würfel 2010, Scarpellini and Sbracia 2009) have shown that the pregnancy rate increases significantly and that the success rate of pregnancies in patients suffering from recurrent miscarriage shows a similar increase with treatments incorporating granocyte starting from the implantation phase.
I asked about whether it would be ok to fly to Ireland for a week around Christmas and she told me that she used to advise people not to fly at all but she has had loads of patients travel abroad for treatment and it hasn't affected their
results so she thinks there is no problem with us going to Ireland, a short flight, for a week after the transfer. So that was good to hear! We will have to miss my cousin's wedding in early January which is disappointing but we
will be with my family for Christmas itself and that should also help the two week wait pass quickly! We would fly back to Germany in time for the blood test result and then if I get a positive test I'd continue with the meds and treatment.
The doctor also mentioned that our fertility clinic doctor, Dr. Direct, had written to her saying that he wouldn't administer the intralipids at his clinic. This confused us as he had told us at our consultation a few weeks ago that I would be able to get it done there and that he would support the treatment. So now I'm wondering whether he had written her the letter before our chat with him and changed his mind or whether he decided after talking to us that he doesn't want to administer the intralipid at his practice for some reason!
Apparently the intralipid medicine itself is difficult to procure in Germany. You either need to find an international pharmacy that will order it for you or you contact a pharmacy abroad such as in Austria yourself. The immune doctor also mentioned that medicine is cheaper in France and we'll save money if we buy some of the meds there. We need to wait until she sends us out the prescriptions and treatment plan before we can buy the meds though. She said she would send it in about two weeks. In order to go ahead with IVF in December, I would need to get the first intralipid infusion around mid November so I just hope I'll be able to get the meds in time and find a doctor willing to administer it.
So there you have it! I feel positive having a plan and happy that I should be able to get started soon. I hope things will work out timing wise, that we'll be able to get the meds required and that I can start the intralipid infusion in a few weeks. I am a little anxious about potential side effects and how I will respond to everything. However, I'm a member of a German facebook group and a lot of the women who followed the treatment plan suggested by this immune doctor had success which is promising. Let's get this show on the road!
Monday, October 24, 2016
Thursday, October 20, 2016
Ask any couple going through infertility treatments and they will be able to tell you all about the many ways that it interferes with their lives. Whether it's dealing with the hormones and side effects, managing all the appointments, experiencing the emotional rollercoaster, giving up alcohol/caffeine/whatever, having to miss out on things to save money or not being able to plan much in advance, it becomes really difficult to juggle your life! I've a good friend who regrets how much her and her husband's lives were put on hold during all the time they were going through treatment. They barely went on any holidays together, certainly not flying anywhere so she didn't see her family who live abroad for years. I have always made an effort to try to still live my life as much as I can while going through all this. We postponed our second IVF cycle for instance so we could enjoy Christmas last year without the stress of it all and then later we postponed again so I could go on a family holiday and then for a wedding in Ireland at Easter. It was really nice at the time to take the break from it all and feel like myself again. Not to mention enjoying wine since I'd cut alcohol completely in the months leading up to and during IVF.
It hasn't been easy juggling it all though and I find it can be stressful trying to find a balance. Having to fit appointments around my job means sometimes having to get up crazy early followed by long waits at the doctor and then still having an eight plus hour day in the office. It meant not being able to take off as much time as I might have liked after my first IVF egg collection due to the stress of a work deadline which ended up being the same week! We have had holidays we would have liked to go on but didn't since we knew we would be going through treatment and needed to save money instead. We've had to cancel social events with friends on several occasions too. For instance a dinner and wine tasting that you had to buy tickets in advance for when I thought I might be pregnant by then. There was also a German festival event that was taking place during the IVF two week wait when according to my doctor I should avoid crowds to not risk picking up an infection so we stayed at home instead.
Other bloggers have commented that going through infertility feels like living in limbo land and I can relate to that! I don't belong with single friends who are out partying at the weekends because when you are trying to get pregnant you are supposed to quit alcohol and live super healthy. But I don't fit in with friends who are mothers either and when they all chat about their kids nonstop and plan play dates, I feel left out. Friends who are childfree by choice can be fun to hang out with, though it's still rare to find couples who don't want kids, and they generally can't relate to the lengths you are prepared to put yourself through to try to build a family. Other friends going through infertility are great as they totally get it. If they get pregnant though, of course you are delighted for them but it can leave you feeling left behind once again.
It's so difficult trying to plan anything. I mentioned that we have lots of things coming up over the next year such as weddings of family members and good friends. I would love to attend as much as possible but I'm nervous to book any flights until we know when we can begin treatment for the natural killer cells, how long it will take, and when we will be able to start IVF again. I'd love to go to Ireland over Christmas time but if I do manage to get an IVF transfer done by then, would it be crazy to fly in potentially early pregnancy? One friend said recently that me getting pregnant is the most important thing and I shouldn't think about any flights or trips. Another friend also told me if I were to fly and then had a miscarriage I would regret it! So are my priorities all wrong? Am I crazy to be trying to find some way to go ahead with IVF in November/December and still fly to Dublin at Christmas? If I were to get pregnant and I thought that it would be at risk then of course I would give up a holiday in Ireland. But I'm just wondering whether it would be possible to have both? Another option might be postponing treatment several more months but then I worry about doing that since the older I get the less likely IVF is to work!
So should I continue trying to find a way to still live, travel, enjoy my life around treatments, or is it now time to focus 100% on making having a baby our number one goal? At this stage we're only a few months off from having been trying for three whole years. It's a long time! I suppose all we can do is wait for the phone call with the doctor and then we'll be better able to decide whether we would be able to do the treatment and still fit in a trip to Ireland at Christmas. According to what I've read online the intralipid infusion therapy against natural killer cells would start the month before you do IVF and involves an IV infusion for about two hours. It should be done every two weeks up until the 12th or 24th pregnancy week. I'm already wondering how I would be able to juggle the extra doctor's appointments with my job. Finding a balance between fertility treatment and my life isn't going to be so easy the next few weeks and months but I'm leaning towards doing the treatment for high NK cells in case it's the answer, giving IVF round three our best shot as much we we can and everything else will just have to take second place.
Monday, October 10, 2016
Thought I'd join a what's new with you in September blog link up and share what's been going on with me recently.
What's new with you?
- We are living in our new house about two months now and we love it! There is still lots to do, we have quite a lot of boxes to unpack and some more furniture to buy but it's not urgent and we are getting there. Hopefully by Christmas everything will be done. Though from talking to other house owners, it sounds like the work is never truly finished, there are always new projects and improvements to be done! We had some friends over for our first dinner party in the new place a few weeks ago and it went really well. We served Irish stew with mushroom risotto and walnut and banana cake for dessert.
- We joined car sharing last month. Basically you pay a deposit and monthly fee then you can rent a car from one of the stations near you and just pay for it by hour. The GerMann has been the one driving but I tried last weekend. It was quite difficult actually! Since we don't have a car (the public transport is so good you don't need one here), I've only ever driven when I'm back in Ireland a few times a year at most. Not to mention I'd never driven on the right hand side before, which felt strange! Also I kept reaching out my left hand to change the gears and hitting the side door as you change gears on your right hand side, not left like in Irish cars. Hopefully it will get easier with practice because I felt like a learner driver all over again!
- We are still waiting on our telephone consultation with the immune specialist doctor to explain our blood test results and treatment plan for NK cells.
We did have an appointment with our fertility clinic doctor. He said he isn't able to interpret our results though, we need to wait to talk to the other doctor but he did say he would support us doing the treatment. For instance I could get the intralipid infusions at my local clinic and not have to travel. He did mention that if you get the infusion too quickly there is a risk of a stroke! He commented that he wouldn't want to read about that happening to a patient at his clinic. Hubby said to me afterwards that it sounded like he is more worried about avoiding bad press than actually caring about my health! Hearing about the stroke risk has made me very nervous, there is certainly a limit to what risks I am prepared to take in order to have a baby. I am praying that any serious risks are minor!
The "good" news is that since our first IVF ended in an early miscarriage, my health insurance might pay towards a fourth attempt and not just three. It's good to have that backup plan. I feel like four rounds of IVF is my limit physically and emotionally. I just really hope it works by then!
- Our next book club book will probably be "The light between oceans" by M. L. Stedman. From what I understand the book deals with infertility with the couple going through several miscarriages, so I can imagine reading it could be very sad and feel too real. But I've heard it's very well written. And I would like to see the film adaptation afterwards with Michael Fassbender.
- I went shopping yesterday. Normally the shops are closed Sundays in Germany but every so often they have a special Sunday shopping day. I couldn't decide on anything so in the end I bought myself some new pyjamas. I already have plenty but they looked so compfy and I bought cosy slipper boots too in matching burgundy which is my favourite colour at the moment.
- Some friends from Ireland will be visiting in a few weeks. Now we have the house and space, more people are coming over which we are delighted about. A few weeks ago my Dad and his partner visited and we had a fun time. We took them to the wine festival in Heilbronn which they loved! Schwarzriesling Rose was our favourite. Though Muskateller is a very nice white. We got pretty tipsy trying all the wines! I love showing people around where we live and having friends and family from home is always nice.
What's new with you?
Sunday, October 2, 2016
The first time I heard the term "natural killer cells" in relation to miscarriages and failed IVF cycles, I thought it sounded awful. As if certain women have these toxic cells in their bodies destroying any potential babies! However, I have since learned that everyone has natural killer cells and they are generally a good thing. They help your body fight off infections and diseases (including cancer) and indicate a strong immune system. The theory, which is quite new in the infertility industry, is that some women (I read somewhere it's around 10-15%) have elevated levels which could then interfere with pregnancies. Initially when an embryo arrives into the womb, it will appear as a something foreign since it will have different DNA, and her body will need to decide that this is something good and should be protected and not fought off. It is a complex process so I guess it's easy to imagine that something might go wrong along the way.
While researching NK cells (which has left me more confused than ever to be honest!) I came across a blog saying that if you have elevated levels then you should figure out why, and not just take medicine to reduce them. That makes sense but I don't think it's so easy. I went to a gastrologist recently to discuss some occasionaly digestive issues I've been having and am now getting tested for celiac, just to rule out any other food intolerances. I hope I don't have any more as living with lactose intolerance is already difficult enough! I'm not sure what else I could be tested for. The gastrologist I went to was actually really uncaring and abrupt. He agreed to do some testing but when I tried to show him the blood tests results, he basically just told me to discuss them with my gyno. I had mentioned my miscarriage following IVF to him to explain why we had done the further blood testing and he looked like he couldn't care less. He certainly didn't show any sympathy. Clearly he doesn't believe that stomach issues may have any connection with infertility. I felt quite upset actually after the encounter. On my way home I was sad thinking about those three IVF potential babies that were transferred into me during the first and second round and what could have been...
These days a lot of people have food allergies and intolerances. It's probably due to the western diet, too many processed foods, plus we eat too much dairy in general. A cow's milk is designed for calves not humans. I still eat dairy with lactase enzyme tablets. Completely cutting it out is just too difficult since I love yoghurts and cheese but I have been trying to reduce the amount. I tried osteopathy two years ago when I was attempting natural fertility options (such as acupuncture) and the lady told me that she has had several women who couldn't get pregnant who she advised to quit dairy for three months and they then fell pregnant shortly after! She had the theory that a lot of people probably have undiagnosed food intolerances that they don't know about but could be causing stomach inflammation. It could be the case that your body then says, oh something is wrong, and the natural killer cells get elevated. One of the women on an IVF forum I frequent was able to substantially reduce her elevated NK cells naturally when she followed the so-called AIP diet (Autoimmune Protocol) which is an even stricter version of the paleo diet. It is great to hear there may be some other ways to treat the NK cells, and I also read something about omega3 helping (I'm taking supplements now), but I don't think I would be able to follow such a restrictive diet for that long!
During my research I came across a website saying how great natural killer cells are, that they fight off cancer and some tips on how to elevate them which seemed ironic since I am trying to do the opposite! In general I rarely get the flu and don't come down with many colds so maybe I do have a strong immune system. The treatment for elevated NK cells can leave you more prone to infections so it's important to be aware of that. I came across IVIG & Intralipid Therapy in IVF: Interpreting Natural Killer Cell Activity for Diagnosis and Treatment which mentions the importance of testing for NK cells in relation to fertility and wishes more reproductive doctors would take it seriously.
However then I also found Fertility Fraud: Natural Killer (NK) Cell Testing which says there are too many false positives and no need for the unnecessary treatments. Another negative article: Natural killer (NK) cells – fertility fraud? which suggests the idea of the human uterus attacking an embroyo it is designed to nurture is "preposterous". And from another post on the same site:
Anxious IVF patients are soft targets for hard marketers. In consulting rooms and online, they’re told their bodies may be sabotaging their pregnancies because their embryos are perceived as infections. This ‘NK’ scare may be completely unfounded. Natural killer cells: you have to hand it to the person who coined that phrase. It’s a mortifying description for vulnerable IVF patients willing to try anything to improve their chances. The truth is, intralipids might help. Might. Not will
The next article I read, Reproductive Immunology – What is the truth about Natural Killer cells? sums it up such;
Studies looking into these cells have produced conflicting results, but the majority of leading scientists in this area dispute that Natural Killer cells are a problem in fertility treatment and pregnancy. Given the potential side effects accompanying Natural Killer cell treatments, there does not seem to be enough justification for undergoing this testing and treatment.
Reading all those of course makes me wonder if the tests and treatments could just be a complete waste of money, unjustified and potentially put my health or that of my future unborn baby at risk. Going through IVF, I am already prepared to take certain risks with my own health but I definitely would not want to negatively affect any children! Then again I also read lots of sites which were on the other side of the controversy, for instance: Miscarriages can be Prevented, and this study which concludes:
The results of present study demonstrated that the level of NK cells as a risk factor is associated with pregnancy loss in women with IVF failure.
There was also this interesting article: Natural Killer Cells & Fertility:Cutting Through the Controversy which summarizes;
Studies are beginning to surface that demonstrate IntraLipid therapy does in fact improve the odds of pregnancy for those with recurrent implantation failure. In fact, well-reputed journals (Human Reproduction (2016) 31 (1): 217–218; “The absence of evidence is not the evidence of absence” and (2015) 30 (7): 1526-1531 “Enough! Stop the arguments and get on with the science of natural killer cell testing”) are publishing articles outlining both the pro’s and con’s of testing natural killer cells. Unfortunately, many people opposed to the testing only cite the publication that argues against it. That being said, not everyone requires testing for natural killer cell activation – it should be reserved for certain patients that have already demonstrated an implantation issue. And treatment of these individuals, should their test be positive, has been successful in thousands of anecdotal cases.
I asked around a bit. Two doctor friends think that having high natural killer cells does not cause fertility issues and the numbers can just be raised due to other factors such as stress and to be wary of any "treatment". I heard from someone else who has a doctor friend in Hannover that specializes in fertility that she has had eight patients helped by the NK treatment, even a few of them who got pregnant naturally after failed IVF! I've also read loads of stories on forums from women who had several miscarriages and then got the treatment which worked for them. It doesn't work for everyone though, I know that. Hearing the positive stories makes me hopeful and I think it could be worth trying in our case. That said, I do feel somewhat uncomfortable about it and will definitely be asking my doctor a lot about the risks and side effects.
Would you pursue the natural killer cell treatment if you were me?