I’ve not wrote a new blog for quite some time but I’m still very much active and supporting many women through their journeys, I figured that I should probably do this, as the title says if only I knew back then all of the knowledge I have now and my priority is to share everything I know to try and help as many women as I can that are stuck on this winding road or rollercoaster whatever you want to call it… I’ve never liked rides and this is one that I certainly wouldn’t be buying a ticket for!
I know lots of you like to read my blog from the very beginning and it does have so much knowledge and things that will help packed in it… but if your not like me and don’t want to trawl through the whole thing picking it apart I thought a blog that breaks down my views & knowledge of rpl in a current & up to date manner may be helpful to some of you. It’s probably going to get pretty long so I’d go make yourself a cuppa and prepare to jump into this rabbit hole… my encyclopaedia of recurrent miscarriage, a complete brain dump in the hope that what I know up to now may just help someone get closer to their rainbow.
So I’m going to start from the point you realise you have a problem… your more than 2 losses in and don’t know where to turn next and go from the basic stuff into the real nitty gritty of what could be going on, I don’t like to scare the living daylights out of people but actually feel like having this all down in one place may be useful for lots of you. I’ve also never named doctors and clinics in previous blog entries but I feel it’s only going to be useful if I do so and so I will do otherwise it will be like a cryptic encyclopaedic review of fertility in the uk.. and beyond.
If you have had 2 miscarriages and are over the age of 35 and basically classed as a geriatric want to be mother by the nhs then you can ask to be referred to your local nhs recurrent miscarriage clinic, check your local ccg and the nice guidelines but if your over 35 they should refer you so please don’t let them fob your off with the whole you need to have had 3 losses. If your a spring chicken as they would say and you have more time on your side then unfortunately yes you will have to lose 3 babies and go through the turmoil 3 times before you can be referred.
If your most recent loss has been managed in your local epau then they will most likely refer you directly.. if this isn’t the case then you will need to set up battle with your gp for a referral. These waiting lists can vary all over the country and locally I know can be the best part of a year. It is really important that you look into who it is you are being referred to and whether your local hospital actually has a specialty recurrent miscarriage consultant or team, If they don’t then you most likely will just be referred to a gynaecologist… this is going to be a waste of yours and their time in most cases, the knowledge just isn’t the same.
It may be helpful to know that you can choose to be referred to any hospital, you do not have to be referred to your local hospital therefore you can ask to have your rpl referral made to a specialist that you have researched at another hospital and to be added to their waiting list, I know many women that have chosen to be referred to a London doctor that specialises in rpl rather than waste time waiting to see a local gynae. Your gp may seem extra confused at you suggesting something soooo crazy but you just have to stand your ground, tell them what you want from them and what they need to do… sometimes you need to spoon the food into their mouths even… but just don’t give up until you get your own way.
Ok so your now on a waiting list and classed as a recurrent miscarriage patient, maybe you are wondering what they are going to test you for… the most common rpl panel that the nhs will run is basic blood clotting panel, thyroid panel and if your lucky a more comprehensive blood clotting panel called thrombophillia. You may also get a 3d scan of your womb to look for any obvious structural issues that could be causing your losses. In the last 5 years i couldn’t even tell you how many women I have helped but I could tell you that it is very very very rare that this nhs rpl panel will give you an answer for your losses. Yes some women are found to have a clotting issue and if that’s your problem then great… however it’s not common to find that’s the issue.
I think a lot of women pin a whole lot of hope on this nhs blood panel and are then very disappointed when 9 times out of 10 it comes back all normal and you are told to just keep trying it’s just bad luck. For me personally I would not stop trying for a baby whilst on this very long waiting list, you are wasting time especially if time is not on your side and you are pretty unlikely to get an answer after all of the waiting too.
What can you do in the mean time? Well as most nhs doctors think aspirin is the answer.. they usually advise 75mg baby aspirin daily at night, although the guidelines are now 150mg a day. You can buy this over the counter at boots or many other stores.. I took it pretty much for two years straight every day… the concept is if you have a mild clotting issue that aspirin would suffice and solve your issue, it’s pretty harmless so they just suggest it to everyone. Aspirin works best if taken at night so take it before bed!
Make sure that you are on a good pregnancy supplement, I highly recommend the zita west range of supplements they are I would say pretty average price wise… not aldi level.. not M&S more of a mid ground sainsburys price bracket. They have everything you need and more to supplement your body in preparation for conception and they are folate based. If you want to purchase please always contact me for my link as zita donates 20% back to my charity from any purchases that come from my recommendation of them. They are easy on the stomach and formulated by one of our highest regarded ivf doctors in the uk. I could talk forever about supplements and egg health etc so I’ll leave that for another blog post..
Next go to your gp and present them with the Tommys prism trial advice about the use of progesterone in recurrent miscarriage women with spotting or bleeding in early pregnancy. You can print this out off their website if anyone needs it I can send you it just contact me. If you go and you say your miscarriages didn’t start with spotting or bleeding then they won’t prescribe you it… this can be prescribed from the gp the document says so, they will probably fob you off and say you need to be under consultant care, this is not the case, put your foot down… or lay on the floor and kick and scream until they listen to you.
There are some blood tests that your gp is able to run.. again this may be a huge shock to them that you are requesting something of your own accord… they may need to sit down because a woman is standing up for herself.. just give them a moment to regain consciousness and then continue to press for these tests…
These are what they can do –
Full blood count
You may as well have these done whilst waiting for your consultant app as they will give you some sort of indication as to whether basic blood clotting or thyroid problems is your issue. I cannot tell you the amount of women that have no idea that thyroid function is a cause for miscarriage and the amount of gps that also don’t tell women this too, it’s more likely an issue than blood clotting is.
Something to consider when having your thyroid function (tsh) checked is that the nhs reference ranges are for Joe bloggs and not for women who are pregnant. Your tsh should be 2.5 or UNDER before starting to try for a baby. The nhs would say that a tsh of 3.8 is normal IT IS NOT. Thyroid function can also rise very very quickly in early pregnancy so if yours is already too high pre conception and then shoots up, it could likely be causing miscarriages.
Other quick things you can easily check and think about are, celiac disease are you celiac or have an intolerance to gluten? This can cause an immune response in your body lots of women go for a gluten free diet if they think that they do have an intolerance or are celiac. Are you b12 deficient? If so then this could also mean that your body doesn’t absorb folate (I have this it’s called mthfr gene mutation) they will never ever look into that on the nhs for you… however you need to not take folic acid and to make sure that you are taking natural folate as this is much easier for your body to break down and absorb. Your supermarket pregnancy supplements won’t have folate in they will be folic so you need to invest in better supplements. Definitely get your vitamin D checked, low vitamin d can be a cause for loss and you may need an injectable to supplement it if super low, if only slightly deficient or borderline you could correct this your self with 5000iu oral supplement vitd3 daily. Do you know your blood type? Check that you aren’t resus negative as this can also cause loss and you may need treatment from conception to help maintain a pregnancy.
Another test that only some couples are now offered on the nhs is parental karyotyping, this is no longer funded as part of standard rpl testing and hasn’t been since 2017. If you have had recurrent losses that are over 3 losses and have had to have or opted for surgical removal at this point they will send the baby away for genetic testing to check for a chromosome abnormality as the reason the pregnancy didn’t progress. You will notice here I feel very strongly about saying they remove and test THE BABY… I will never forget the time a nurse said to me that they would send my product of conception off for testing… what the hell kind of language even is that! Or even worse.. the tissue.. I’ve had a baby referred to as tissue before too.
If you was to have had more than one baby test as abnormal and come back with a trisomy issue they will then consider doing the parental karyotyping test. This test will check both you and your partner to see if either of you carry any genetic issues like a balanced translocation that could potentially be passed to all of your pregnancies and be the reason for your losses. The reason this test is not given to everyone any more is because it is very expensive and it’s is VERY rarely the issue. . If this test does come back with an issue then you would be referred to a genetic counsellor that can advise you about options for ivf with genetic testing. I remember when i researched it back in 2017 it was something like a 1 in a million chance that it was my issue.. although I was still convinced knowing my luck it would be! However it wasn’t and both mine and my husbands karyotyping came back as normal. I will add that the nhs won’t do this test if you already have any children as that makes it even more unlikely to be your issue. This is something that you can consider paying for privately I’ll come back to it later.
So with regard to the standard nhs testing that is as far as it goes really… blood clotting & thyroid panel, possibly a scan… if all fine… your normal there’s no reason for your losses and I remember once getting told ‘it’s like rolling a dice you just have to keep on rolling’ I do not think so! I do not believe that recurrent loss is down to bad luck at all… yes there are bad embryos and miscarriage is very common… but I personally think that recurrent loss always has some sort of underlying reason. I do understand that they have to say these things because nhs professionals won’t recommend anything that is not offered by the nhs or clinically approved by the nhs, but it terrifies me that so many women just get told there’s nothing wrong and I know for a fact that many feel that they have to give up at this point.
The nhs don’t test progesterone in pregnancy, unless you are having problems conceiving they don’t test progesterone full stop in most cases, a lot of women often have a luteal phase defect that is affecting implantation and causing biochemical pregnancies or very early losses. Sometimes you have to really put your foot down to demand progesterone, if you are successful you will usually be prescribed it from a positive pregnancy test, if that is the case and it is someone other than your gp that has agreed to this it is very important that you follow this up and make sure it is written on your Gp records that they prescribe it the moment you find out you are pregnant, progesterone is CRUTIAL in those early days and having to wait around several days to sort the prescription could mean it is too late.. if you can get a prescription so you have one at the ready that is ideal. If you have spotting between ovulation and the start of your period this is a sign your progesterone could be too low to achieve a pregnancy and you may need it from ovulation, again not something many nhs doctors will agree too but if you advocate and argue your case you may get lucky.
So to summarise, if your nhs testing is ‘normal’ then aspirin and progesterone with a good fertility supplement would be your way forward if you do want to try again without any further investigation at that point.
Before I go any further I will once again acknowledge that I am fully aware that private health care is not an option for everyone and that I don’t just think it’s an easy option, I know for lots of people it is not affordable and must highlight that the reason I do all of this work that I do is to always try find other ways or options for women and to pass on all of the knowledge I have in the hope that it could be something small that has been overlooked and means someone that has given up could actually find their answer.
If private investigation and treatment isn’t an option for you then reading any further may not be helpful or useful although I do think you can never equip yourself with enough knowledge when you are faced with recurrent loss. Even if it is out of reach right now you never know what the future holds and so reading on and knowing about other causes and broadening what you know may help in some way in the future.
When starting decide what to do next it can be very overwhelming not knowing where to turn and which doctor or clinic to use. One thing a lot of women tend to do is jump straight into ringing their local spire and booking in with a consultant there, just go careful with this as often it will just be a gynaecologist with an interest in miscarriage and often not a recurrent miscarriage specialist, so make sure you do your research about who it is you want to see at your local spire. One useful thing you can achieve with doing this though is you can often jump the nhs list by paying for a consult at the spire and that consultant fast tracking you to your nhs blood panel, I’ve found that’s about as useful as going to the spire gets… again only own experience and thoughts.
If you have ruled out clotting & thyroid issues with the nhs panel then the next thing that comes up is immunology and pregnancy, now this is not spoke about very widely within the nhs because it’s not something they will treat, there hasn’t been any big enough clinical trials and research to warrant this ever been considered as a cause for treatment on the nhs. Now I can tell you that immune issues especially killer cells are A LOT of womens issue and more importantly it is the answer for many many women that I have spoken to over the years and that I have read about. It’s controversial because the research is so new but if anyone tries to tell you (especially a medical professional) that it is nonsense, please don’t listen to them, if it was nonsense then why do so many women have success with immunology treatment? The answer is.. because it is real, it is an issue!
If you know my back story or have read the rest of my blog you will know that immunology was my answer, I was found to have a high number of nk cell count, the specific cell was cd69 and these cells attack the fetus after implantation. There are also other kinds of nk cell issues such as activation level nk cells which isn’t necessarily the amount you have but it’s how aggressive they become in pregnancy that causes an issue.
Back in 2017 there was only really two options with immune issues that I could find and they were to go to dr quenby in Coventry for an nk cell biopsy or to go to Mr Shehata in London who is a leading specialist in immunology. Now if you have read previous blogs you will know I did a lot of reading and research into the nk cell biopsy option, this is sometime recommend by nhs doctors because it was part of tommys research and so they can recommend it. I know lots of women that went and had this done was told they didn’t have an immunology issue or were given just steroids as treatment and still continued to lose babies and then needed to go on to see other private specialists to have further layering of immune treatment to have success.
Tommys are always doing lots of trials and new research which is great because if any one is ever going to make ground breaking research that will make the nhs run clinical trials and make change then it will be them, however that said I do feel like there has been several things trialled over the years and they seem to just tail off and not really go anywhere. First of all it was the biopsy nk cells test but the last I heard was that they don’t do it any more due to a machine been broken?! Next I read a lot about the sitagliptin trial which is a diabetes drug that they were using to help make the stem cells in the uterus more picky as a way of treating hyper fertility, I watched a couple of conferences on how the outcomes of the research weren’t showing a huge improvement compared to the people who had the dummy drug, I think that has now also come to an end with no new major developments. I believe the current research is into the infections of the uterus and relationship to miscarriage which I go on to talk a bit more about later. when these trials don’t really lead to any great results then the nhs doctors use that to say to women well there isn’t really any research to back it up so we aren’t treating nk cells… yet as I have said a thousand times an immune protocol is the answer for probably tens of thousands of women if not more!
As I have repeatedly said in many of my blogs about ‘the king’ yes he is Mr Shehata, I think he is a fantastic doctor, I do not believe that I would have had success if I hadn’t gone to him for my testing and found my issue. The clinic however is very high end price bracket and is not a cheap option, I know prices have risen over the last 5 year too. Choosing to go there is a real commitment as you have to be prepared to travel to London very regularly for lots of scans and there is no flexibility within that as far as I’m aware it is his way or the high way… we spent £7700 at the clinic in 2017/2018 and I know women that have spent upwards of 10k. So if you were to ask me would I recommend the clinic.. if money & travel is no object to you and you have endless amounts, then yes I think you will get answers there. However that said I now do know that the treatment protocols there are not everyone’s answer and they are not flexible on listening to your thoughts or the opinions of other doctors/specialists so if you want any flexibility within your treatment I would say this is not the way to go.
In my more recent blogs I talked about the route I went down 2nd time around and that was with Amanda Tozer, I cannot speak highly enough of her as a doctor for many reasons, she’s just bloody wonderful for many reasons! However as far as I’m aware she is currently not taking on new recurrent miscarriage patients so unless you are already on her books I don’t think you would have any joy in getting in to see her. I am though going to tell you what I like about her as she may reopen her books at some point! I like the fact she listens to you and is willing to take on board your own research and opinion on what your issue may be. She’s happy to treat empirically without thousands of pounds worth of testing, but she will do the tests if you want them. She often always has another next thing for you to try or consider. If you are needing ivf or assisted conception then this could be a way to get on her books as she will then see you and treat the rpl alongside, so a possible loop hole for you if you are struggling to conceive. Ivf is not cheap at the aria clinic though so please bear that in mind!
Women that know they have or suspect they have an immune issue mainly want to try three things; steroids, hydroxychloroquine & intralipids in the first instance. Mr Shehata & Amanda Tozer are two doctors that I know of that use all 3 of those treatments. I also now know that Dr Gorgy at the fertility academy also uses these treatments again very high end and more costly in the long term than Mr Shehata, so out pricing probably the majority of the population, I will talk more about him and what he offers later one when we get to that stage.
A newer option that I don’t know very much about at all and I have no personal experience of is a clinic called nova fertility. There are offering recurrent miscarriage consultation and prescribing steroids, progesterone and blood thinners so this is an option if you really want to try out steroids and don’t have the option to go to any of the above financially or was wanting to go to Amanda but can’t get in with her. I’m not sure on cost but from what I have read it is an initial consultant fee and then private drive prescriptions so pretty low key private care, may be a good option for some people, if you do go there please update me on your experience I would really like to know more about them and what it is they are offering.
I know hundreds of women that have found some combination of the above drugs (pred, hydroxy & intralipid) to be their answer and to have their rainbow baby on a protocol using all or some of those drugs, however it is not the answer for everyone. If you are one of the people it’s not worked for a few things to consider are; firstly a lot of women try it once, have another loss and say it didn’t work PLEASE always remember that no drug protocol will save a pregnancy that has a chromosomal issue! There is a a chance every month that you will hit a ‘bad embryo’ and no kind or amount of treatment would have worked on that pregnancy. That’s why I would always say you need to give a new protocol at least two chances really unless you are doing it with a tested embryo in ivf you never know if you are hitting a good one with the protocol at the same time.
Next I would be thinking about scarring of the uterus, if you have sadly had lots of losses and a lot of surgeries then it could be the case that you are left with scarring that may result in ashermans syndrome affecting your ability to carry a pregnancy and or to conceive too, you also may have an underlying septum that could be causing losses/infertility too. Again this is one of the things that most nhs doctors will say is not a cause for loss or infertility, however from knowing lots of women that it has been an issue for I would say it’s something that needs to be investigated further privately if you think it could be an issue for you. This has never been an issue for me but I know good friends that would recommend seeing doctor Adrian Lower to have this investigated throughly.
Let’s have a round up of where we are at now, nhs testing done, progesterone & aspirin not worked, immune protocol tried and failed (pred, hydroxy, intralipid). Have possibly investigated scarring and uterus environment for anything anatomical that may be affecting your journey.
Something else that has become much more talked about in recent years is possible infections in the womb that could be causing problems, now this was also a thing back in 2017 as I did look into it for myself and had a test done but it has become more widely covered and discussed I think because tommys have been researching it. I did the test for infection with serum in Greece and back then it was the only place you could do it with, if your eating your tea you may want to stop reading now until you have finished or I may put you off the rest of your meal! The serum test involves sending off a sample of your period blood to be tested for infection; back in the day I just had to send via Royal Mail but I think they have specific couriers etc now and I’m not sure if the rules changed on just popping your period in the post…. Quite funny when you put it like that! My test came back normal showing no infections, the most common ones looked for are endometrisis (not endometriosis) and chlamydia but there are many others! The treatment is very high strength courses of antibiotics (doxy usually).
Again this is something that really you could just skip the testing and ask your consultant to give you the course of treatment to cover all bases… I know that Amanda Tozer will treat these infections empirically if you ask her to and are under her. You can still do the test with serum in Greece it is on their website they also offer a range of other testing with very reasonable pricing so if you want to save some money and fancy a Greek holiday then go for it! I know that cherish in Sutton Coldfield also offer quite a range of testing so you could enquire there and they also offer intralipids too and are one of the only places north of London that will administer intralipid and also for a very reasonable price!
For lots of women after ruling out all of the above plus infection they start to consider ivig as an answer if the other immunes have failed them several times. Now Ivig is a blood product and is very very expensive, mr Shehata uses ivig in his results listing as a successful treatment suggestion in 99% of cases yet as far as I’m aware it’s not something his clinic offers… fathom me that! Oh I know the answer it’s ivig… but I don’t offer it! Just to give an idea of the kind of money we are talking at this point ivig is usually in the region of £2000 plus a time and intralipid is £350/£400 so it is a HUGE jump in price, but as many of you will know we often consider remortgaging and all kinds of things when the desperation kicks in and you will literally do anything to get your baby.
Ivig is a last resort for most women I’ve ever spoken to and I only know 3 people personally that have chosen/been able to go down that route. Now I know that the ARGC clinic offer ivig both with and without fertility treatment, they have very high success rates and a great reputation but the price tag is not for the faint hearted, it is crazy money but they will monitor your pregnancy daily/weekly very very closely, again it does kind of become a full time job though and you would definitely need to be near by or to consider staying in a long term air bnb for sure!
Dr Gorgy at the fertility academy London is also another doctor that does use ivig, I mentioned him earlier, this is another clinic that offers a lot of extra more in depth testing than any other in the uk. He specialises in all of the immune side of things and offers more in-depth immune testing and treatment then any other clinic, he is also the only doctor that does lad testing and lit treatment in the uk which is something worth looking into after you she ruled out all of the other stuff and had several failed attempts on immune protocols. Lit treatment is where they inject white blood cells from the prospective father into the mother to prepare the mothers immune system for pregnancy, it’s more complicated than that but that’s a basic analogy of what it is.
He is also offering some more recent and new testing/treatments called X/Y restricted alleles which is an issue that occurs for women suffering recurrent miscarriage after having a first born son. Emma/Alice tests and endometrial biopsies are among some of the tests that are becoming talked about more and more current than anything available 5 years ago. Which does just show that things are changing and developing slowly over time, yet it only seems that’s the case in private clinics and not so much within the nhs.
You can do a lot of this more expensive testing and treatment abroad and save quite a lot of money but then it is weighing up the pros and cons of having to fit in all of the travelling alongside work commitments etc, Serum in Greece offer a lot of immunology and also they do the lit & lad stuff too for a fraction of the cost over here.
So there we go, a total brain dump of everything I can possibly think of.. at the moment anyway! As things are constantly changing with research and what clinics are out there to help, it’s important to me that I stay up to date with the most current and best practice to be able to pass on my knowledge to you ladies that are on this journey. I will continue to build on what I know and to share it with you. I have lots that I would like to say about ivf clinics but that’s too much for this blog so I will endeavour to write an ivf focussed entry soon,
If you are struggling to conceive I really recommend my birds and the bees blog as I know it has taught so many women so much that they had no idea about, however I would love to update that to and as I now have an affiliation with Ovu sense I will cover that and more in a let’s get busy blog soon!
For now I will leave you with all of the above to get your head around and please reach out if you have any questions my inbox is always open… most importantly …. Keep on chasing rainbows!
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