After feeling low and fed up after my 5th loss I soon found my get up and go again to be proactive about what I was going to do to solve this. As I said in my last post financially last year was a real struggle and after a lot of work on our house in 2019 our savings were drained and so going back to the original London clinic is just far out of reach at the moment.
I did approach the clinic to ask if things could be done more remotely to try cut down some of the cost, as you are required to have fortnightly scans at a hefty £275 a go plus whatever consult or treatment that is needed at that point, it soon amounts to big money. Don’t get me wrong I will be forever grateful for that doctor and truly believe even more so now that I would not have had my son without consulting him.
I must make that very clear that I still believe he is the best doctor in the field and that his knowledge is completely invaluable, I would love to say it’s priceless but that’s my only issue that it’s not and I’ve come to realise even more that it’s so out of reach for many women & couples and that’s the part I struggle with. Yes you get impeccable care and treatment and so you should for the price tag but what if you can’t afford it and you have hit the end of the road with the nhs?
Any woman that messaged me having read my blog and wanting my advice of what they should do next especially if they think they may have immune issues, yes I hands down would still absolutely recommend going to this clinic. I don’t think you will find testing that is as thorough and also the treatment options aren’t limited and there isn’t a one drug fits all theme. Especially if age is not on your side or if you have low egg reserve then yes I absolutely think you need to go and get the whole hog done and not waste any time going around the houses as I’ve seen so many people do that to try save money but have often resulted in losing a lot of time and money and then ended up going down that route as a lost resort in the end anyway. So yes if you are reading this and I have advised you to go there I 100% stand by that advice and think you will be in the right hands.
We have to remember most importantly here that I have been down this awful road once before and did do all of the testing to get to the bottom of my issues and I did get my answers and a treatment plan that did work with a bit of tweaking after a 4th loss. For anyone that hasn’t read three years worth of my blog I’ll just go over my diagnosis for you.. when I had full immunology and rpl testing my results showed high natural killer cells (cd69) that during testing responded well to steroids with intralipids. I also have mthfr gene mutation and I used to have a slightly raised thyroid function too.
My original treatment plan consisted of, progesterone 400mg from a positive test, 25mg steroids from ovulation and until 12 weeks and then weaned off gradually dropping 5mg every 3 days, 75mg baby aspirin, 25mg thyroxine due to slightly raised tsh. I went on to have a further loss under this plan which was most likely to be chromosomal as it was a blighted ovum, but nevertheless the doctor added in an extra drug hydroxychloroquine 400mg daily, I was required to be on this 6 weeks before conception however I conceived 8 days later and so even though I was on it until 16 weeks pregnant I have no idea if it was a contributing factor to my success.
As I have stayed very proactive in the rpl community I am very clued up on current practice and changes that have occurred over the last 2/3 years one main one being that it is far easier to get progesterone now after the Tommy’s Prism trial results and that is a great development and I’m glad women aren’t having to buy it illegally in Turkey and the US having run ins with customs and meltdowns with doctors like I did.
It is now proven that for women with recurrent miscarriage that have spotting/bleeding progesterone can help to maintain a pregnancy, I know not all doctors will agree and prescribe but there is a hand out you can take with you to a doctor and well you have far more chance now then I did in 2017 of getting your hands on it! Another progesterone development is that most rpl doctors are now prescribing a higher dose of 800mg (2 pessaries) a day and also from ovulation too.
My plan of action was to find a way of replicating my original treatment plan in a diy style so that I could avoid the costs of trips to London and expensive scans and consults where possible. I have known about a doctor for around 18 months now who is also based in London and is working with couples on immunology treatment empirically. I have actually recommended her to a few women who wanted to have a private consult with a doctor without it costing the earth and having to have all of the extensive treatment to get any help.
The only thing to bear in mind here though is when you are trying out things just in case they work it is very experimental, you don’t actually know if it will work and you don’t really know if you need the treatment however that said if you are at the end of the line with the nhs and have time on your side it is absolutely an option if you mentally could cope with potentially further losses until you get it right.
I booked a telephone consultation with the doctor which was a breath of fresh air not having to travel, I sent over all of my medical history, my test results from the original clinic and also my treatment plan that I had in my 5th pregnancy. When the doctor called me I have to say I think she was the nicest stranger I have ever had a 45 minute chat with in my life, she wasn’t patronising, she was just wonderful!
She had clearly read through everything I sent over as she knew all of my history as we talked through it. I explained my reasons for not wanting to go back to the original clinic those being the money, the travel & the repeat testing costs. We also talked about my most recent miscarriage that wasn’t on treatment. One of the first things she said was what happened with the last loss is very typical nk cell behaviour and she absolutely does think it’s related to that and my other losses (as do I). She explained something to me that I was never told before and that’s what I liked about her the amount of detail and explanation that she went to.
She told me that the raised nk cells that I have (cd69) are not linked with implantation failure or attacking of the embryo before a positive test unlike (cd19) of which mine are within normal range from my original results. So the attacking of the nk cells is taking place after implantation and the positive pregnancy test and not before, she also said this leads her to think I don’t have a progesterone issue either, again this would make sense as I was on progesterone for both my 4th & 5th losses.
Next she said that looking at my results she would be inclined to say that I need the whole hog and everything I was on last time. However last year most consultants stopped prescribing steroids due to Covid and the way they drastically wipe out your immune system, some doctors will now start to use them again possibly in smaller doses in 2021 but are advising patients on them to shield where possible.
I always said during my pregnancy with my son that I would never do the steroids again as I had such a rough time on them with heart palpitations and high blood pressure and I still very much feel that way, if it was the very last resort I of course would do it but I personally would like to try a different combination first. I told the doctor I would like to give the hydroxychloroquine a go with the intralipids & progesterone and to cut out the steroids.
She asked me how I would feel about just doing a lower dose of steroids at 10mg instead of the 25mg and I said I would consider it down the line but not right now. We talked about the hydroxy and I already knew it was not a drug she regularly prescribed or works with because I’m aware my original doctor is one of the only doctors in the uk using this anti malaria drug to treat recurrent miscarriage. She was very honest that she doesn’t use it but she agrees that because I have been on it before with no adverse reaction and because it was written in my treatment plan from the previous doctor she would be willing to do it for me – yippee!!
The next thing to discuss was the intralipid infusions, these are something I’ve always not been too sure whether I ‘believe in them’ mostly because they are the most expensive part of the treatment and so I’ve often wondered whether they are just a money maker for the big clinics, I always said that next time I would try without them, however now that I’ve also decided I don’t want to try with steroids right now I think also cutting out intralipids from the plan is probably too risky and leaving me with less chance of success.
However the new doctor made me feel like it is worth it and she discussed how the intralipid works on your body and why she uses it so much in her ivf patients and that there is research that it does help to lower immune reaction in the body, because I already trust the fact that she’s definitely not a cash cow because she’s so willing to treat remotely I feel more assured that the intralipid is in fact needed.
I asked the doctor if I was able to somehow find a clinic up North that would be willing to administer the intralipid infusions for me would she be willing to prescribe them for me to have them closer to home, straight away she said not a problem she doesn’t want me to have to make unnecessary trips to London and again because she knows I’ve had it previously without adverse reaction she would be more than happy to do that. Wow I am literally blown away with how helpful this doctor is, this is all new to me as everything normally has to be a battle.
We ended the consult agreeing that she will post out the prescriptions for me for clexane and Hydroxy, I will do some research into intralipid options up north and report back to her about that. Overall I’m feeling positive that I will be on some treatment next time, it won’t be the exact treatment I had with Ted with me choosing not to do the steroids but I think with the risk of Covid this is the best decision for now, If I have another loss then I will just jump to doing everything the same as I did with Ted.
I’ve emailed several ivf clinics across Yorkshire, Lancashire and Nottinghamshire and found that most clinics won’t treat you if you are not their patient, which is not ideal. However I have found a clinic in Warrington that will give intralipids if you meet certain criteria, you have to have had them before (tick) you have to have a doctor willing to prescribe them (tick), so this is a real option for me and only 2 hour ish journey compared to the London trek.
I have also come across another company called the fertility pharmacy based in Nottinghamshire who are at home nurses and pharmacists that dispense and can treat you in the comfort of your own home WHATTTT 😱 now this would be pure amazing compared to the 12 hour days getting them in London and travelling feeling god damn awful! I’m in discussion with both the above clinic and this company so will now go back to the doctor and discuss with her too!
As I said in my last blog this is not something we can afford to do right now but we have decided that time and family is more precious and so we will be putting all treatment on to an interest free credit card and will worry about it later, after all I’m now 34 and don’t have the best egg reserve.
From reading this you can probably tell I still have so much fight left in me, I will not leave a stone unturned in my fertility battles and the reason for that is I want it so bad, my biggest piece of advice to any woman in this situation is you absolutely have to be your own advocate and you have to be proactive and willing to go to all lengths.
I do get so many women that contact me and feel they are at the end of the road or that it will never happen for them and then when I ask them what are they doing to make it happen quite often it’s not a lot, you HAVE to do this for yourself it won’t just come to you, it won’t just happen when the time is right, you need to find answers and you have to fight back. I am on your side, I will be on your team but you have to want to fight.
I will finish by saying something I said probably a couple of years ago now in one of my early blogs, as much as we like to believe what medical professionals tell us, it is not always right and if the person who you are asking is the wrong person then your not going to get anywhere, for example a general practitioners knowledge is generally very basic when it comes to hormones & fertility issues, if your gp tells you everything is fine that does not mean that it is, you have to dig deeper and you have to research for yourself.
I will start this year with a new doctor and slightly different protocol, hoping it will work, but if it doesn’t I will tweak it and get up and try again,
Whatever it is that you are hoping and fighting for in 2021 I hope that you are successful,
Keep chasing rainbows,
You know where I am,
Crazy Fertility Queen 👸 xxx
1 thought on “What’s the plan Batman?”
So helpful! I’m seeing Amanda tozer next week. I think it’s the first time I haven’t felt crazy reading this everyone thinks I’m crazy keep on testing!!! But I need to rule everything out! 😢